Matt's Multiple Sclerosis

Been in Hospital but OK!

2012-02-15T12:05:00.000-08:00

HEY EVERYONE! SO SORRY I DISAPPEARED! CAN HARDLY TYPE SO HAVE TO KEEP IT SHORT, DETAILS TO COME. BEEN IN HOSPITAL AND REHAB WITH WORST RELAPSE EVER BUT DO NOT WORRY, I AM OK. WILL POST BETTER MESSAGE SOON AND WILL TRY TO RESPOND TO MY MANY MESSAGES ASAP!

SORRY FOR THE SCARE AND THANK YOU ALL FOR YOUR CONCERN! I WILL BE BACK SOON! :^b

-MATT

Symptom Log - Feeling Drunk

2012-02-03T13:23:00.000-08:00

The last few days have been interesting but of course not in a good way. Have had several moments where I feel drunk out of nowhere then after a while it clears up. Have been dealing with really bad restless leg syndrome again and last night it even migrated to my arms which was really weird. Falling asleep has not been fun even with the help of medication... Have had a really bad pain in the back of my neck/head and ear area on the right side only. I can not tell if it is MS related or not. No bumps or anything to indicate a bug bite so I don't know. Also have been waking up with headaches lately so today I took a bunch of Ibuprofen and a Percocet and now I feel really sleepy but the pain is gone for now. I think that covers the main major changes.

Symptom Log: 2/3/2012

Can not feel heat very well on skin
EXTREMELY sensitive to cold touching skin it burns.
Tender skin on back of neck/head, very painful, hurts inside ear as well
Occasional ringing in the left ear
Balance, bumping into walls
Clumsy
Occasional spasms in fingers (mostly mornings)
Pain in fingers and top of hands
Pain in forearms and elbows
Cognitive fog is the same
Vertigo when I move my head too quickly (Not too bad today)
Drunk sensation
Lhermite's Sign (Feel it in my lower right ribs)
Minor depression (Situational)
Horrible Restless Leg Syndrome
Waking up with headaches
Vision is a tad fuzzy
Blind spot has been up and down in severity

Current Medications/Supplements

Gabapentin (600mg)
Norco (As Needed)
Oxycodone (As Needed)
Citalopram
Lecithin
Vitamin C
Vitamin B-12 (Ran Out)
Calcium (Ran Out)
Vitamin D (Ran Out)

MS Friends - Meet Jessica Duley!

2012-02-02T10:06:00.000-08:00

Today I would like to introduce to you Jessica Duley from the UK! Jessica is yet another MS warrior who runs a VLOG on youtube which you can find by CLICKING HERE! For this edition of MS Friends I will be playing one of her videos which is personally one of my favorite Multiple Sclerosis videos on the internet! It was shot well, the story is told well, it communicates how she feels about living with Multiple Sclerosis, and it simply demonstrates some excellent directing skills which as a secret movie critic I find to be very awesome! I love it! So watch it and share it!

Progress - January 2012

2012-02-01T17:18:00.000-08:00

Still Learning My Ever
Changing Limits...
Friday, January 27, 2012

Speaking at Loma Linda University!
Monday, January 23, 2012

Thank You! On My Way To Success!
Thursday, January 19, 2012

Booking A Photo Job! A Wedding???
Tuesday, January 17, 2012

Roid Rage X 100! Loosing My Cool!
Monday, January 16, 2012

Steroids Make Matt Angry!
Sunday, January 15, 2012

I Love Forest Falls!
Thursday, January 12, 2012

New Doctor at Loma Linda!
Tuesday, January 10, 2012

Overcoming MS With My Zen Zone
Monday, January 9, 2012

Let's Do This 2012!

Monday, January 2, 2012

BACK

Multiple Sclerosis Symptom – Cognitive Fog Pt. 2

2012-02-01T12:25:00.000-08:00

Well everyone seemed to really appreciate my last article on cognitive fog or "Cog-fog" as we call it so here is the long awaited "Part 2"! There was much discussion in the comments section of that last article and many people brought up some good points that I wanted to bring up here because I knew that there was no way I could have covered it all in that last article because first of all it would have been too long and second of all my cog-fog does not always allow me to remember every little detail and as many people with MS know, it's the little things that can have some of the largest impacts! So let's get started shall we?

"My mum said, well, I get all of those things sometimes. I said, yes but I'm only 46 and you're over 70, and I get them often, not sometimes."

I am sure we have all been there, I know I have... Something happens and you just have to tell someone to express your frustration like when I first mistook my razor for my toothbrush. The response I got was "Well don't worry, I have done that too, it happens to all of us". As mentioned in the quote above, yes it does, but the thing is, it happens to me all the time, not just every once in a great while... It's hard because you don't always know if they are just saying that to try to make you feel better or because they don't actually understand... I wouldn't mind if I knew it was just because they wanted to make me feel better but when I think it might be due to a lack of true understanding it get's frustrating because you feel stuck in that "no one understands" boat, "I must be crazy!".

"I forget phone numbers, names, even of people I've known a long time."

Memory loss is extremely frustrating and comes in many shapes and sizes... Sometimes it's just some short term memory and sometimes it's things that you would think of as a long term memory kind of thing. Names? Phone numbers? I have such a hard time with names it's not even funny... I could have spent a whole semester with you in school and after all that still not be able to remember your name. Sometimes I blank out on people's names who I have known all my life like and uncle or a friend I grew up with. Sometimes I even sit there and think "Ryan, no that can't be it, Ryan doesn't even sound like a name or a word, it just sounds weird".

And maybe because I am constantly in a state of forgetting something I start to feel like I am always forgetting something or maybe that is just part of the symptom. Something always feels off, like something has been forgotten, something is wrong. Kind of like when you leave the house and wonder "Did I remember to turn of the iron?" except that feeling will pop up out of nowhere when you are simply sitting down watching TV and you have had nothing going on all day.

"If we were covering something in school that I had learned a few years prior, I'd be fine. Once we started covering new material, I was lost. Normally, if I just read something I'm fine, I get it. This time, I would read a piece of text, turn to jot down a note about it, and by the time I had grabbed my pen I had completely forgotten what I had read. Every time I went to write a test, it was like I hadn't heard of any of the content before, no matter how many times I studied. Each study session, it was like learning the same material from scratch over and over again"

Not only is loosing memory an issue but sometimes adding to your memory is an issue! Learning new things when battle Multiple Sclerosis can be extremely difficult because as mentioned above, as soon as you take it in it is gone! Whether you are reading the directions on the back of a box of rice or studding for school, as soon as you take the information in it disappears and you find yourself constantly looking back at your source of information trying to figure out why you can't get it to stick!

My dad called me yesterday and asked me to take out 4 chicken breasts from the freezer to let them start defrosting. I hung up and walked over to the freezer and removed the bag of chicken breast. By time I had opened it up I had to call him back and ask "Did you want me to take out 5 or 8?" "No... Just 4...". It's so frustrating!

Let me tell you what I think is going on in this situation. Your brain is supposed to take in all the information around you and that information gets sent to a special "room" we will call it. Then your brain proceeds to pick out the stuff it thinks is important and tosses the rest aside because there is no point in dedicating it to memory. Well for some of us, it's like our brain just toss out everything even though some of it is actually important so unless we consciously make an effort to manually dedicate it to memory it will just disappear! It's hard because it's like breaking a habit, we lived most our lives with a properly functioning brain that would have held on to how many chicken breasts we were just told to remove from the freezer but now I have to make a conscious effort to remember every little detail like that and sometimes we forget to make that conscious effort because we are acting on an old habit of having a brain that functioned properly so all the information we take in from the world around us just enter that room and immediately leaves through the back door because "the sorter" is off on a really long lunch break.

"I am completely chronologically impaired, can't even remember what I did yesterday, to figure that out I would have to sit down and really investigate myself"

"When was the last time you experienced this symptom" asked the doctor.
"I don't recall..." I replied.
"Well when do you think, just try to guess about how long it has been."
"Um... 2 weeks? No wait... 2 months? I really don't know..."

Time has lost all meaning to me as I can no longer keep track of it. I can't tell if it has been a day or a month since an event occurred. If I didn't write down when something happened on a calendar or here on my blog then it is gone, it is no longer accessible from my memory. It could have happened yesterday and I won't be able to recall it or I may think it has been 3 days since we went to the park when it was just yesterday... I have not seen my Mom's side of the family in about two years but it feels like just yesterday that we were all getting together for Christmas Eve... This cognitive issue is a strange one and really messes with me which is why I am trying my best to keep on top of my calendar and my symptom logs because then I can literally print my artificial memory out.Sticky notes are an everyday thing for me as well...

Sometimes I Can't Help But Wonder...

Will my inability to create that one necessary brain synapse to recall an event or recognize a person or object eventually grow into a problem as sever as Alzheimer's disease? According to the MS society, Alzheimer's disease presents a different type of memory loss so maybe not but I have also read out there that some people believe there is a link... I don't know enough about it yet to know for sure but what I do know is that I want to exercise my brain all that I can so I don't continue to get worse because if it's this bad when I am just 21 how bad will it be when I am 30? 40? 50? 60? Maybe I just have not found the right treatment for my symptoms yet and maybe there is something out there that will help my cognitive dysfunction but either way, I think it is important to treat our brains like muscles, they need exercise or else they will experience brain atrophy and that won't help any of this for sure! Plus, who wants a tiny shriveled up brain? That's just unattractive... Take care!

Symptom Log - Off the Prednisone, Up the Gabapentin

2012-01-31T18:16:00.000-08:00

Today i am officially off my Prednisone Taper but as mentioned in the title I am upping my Gabapentin intake back up. It seems that the pain issues in my hands and sometimes arms is back to stay but for how long I don't know. It typically strikes in the evening even if I don't necessarily feel tired. Stress also can induce this pain but U have more evening in my life than I do stressful events so that is my primary focus when it comes to the cause.

The last couples of days have brought with them sensations of warmth on the left of my back and sometimes in my left leg. This is exactly what I was feeling after my supposed sciatica just before my diagnosis in August of 2010... So now I have to wonder if that was actually the onset of my disease? Doesn't matter for now, so here is a list of my current symptoms and medications.

Symptom Log: 1/31/2012

Minor numbness/Pin and Needles in left hand (either not as bad or I am getting used to it.)
Warm sensation in left of back and left leg. (feels like a heat back in being applied)
Tender skin on back of neck/head
Occasional ringing in the left ear
Still somewhat clumsy
Occasional spasms in fingers (mostly mornings)
Pain in fingers and top of hands
Pain in forearms and elbows
Cognitive fog is the same
Vertigo when I move my head too quickly (Not too bad today)
Drunk sensation
Lhermites Sign (Feel it in my lower right ribs)
Minor depression (Situational)
Skin sensitive to cold (Always had this, always forget to mention it, but has felt worse lately)

Current Medications/Supplements

Gabapentin (600mg)
Norco (As Needed)
Oxycodone (As Needed_
Citalopram
Lecithin
Vitamin C
Vitamin B-12
Calcium (Ran Out)
Vitamin D (Ran Out)

Don't Be Shy, Meet Others With Multiple Sclerosis!

2012-01-30T09:51:00.000-08:00

A lot of people with Multiple Sclerosis are somewhat shy about it, they want to hide it. Now in some cases that is OK and some people would even say that it is the right thing to do in certain cases but when it comes to your individual life you should not be shy! It is amazing what talking to others with MS can do for you! I would not be doing as well as I am today if it was not for the many other MS friends I have made online.

That is the beauty of the internet, you can have an entirely separate life that no one else knows about but you! Sure that opens doors for all sorts of creeps but that is a totally different conversation that we are not going to get into haha... Anyways, my point is this, you want to keep your MS a secret? That is fine but you can do that while still being open about it! Join an online support group! I run one myself on Facebook, it's a private group called MS IS BS. Since it's private, no one can see that you are part of it and no one can see what you post in it except for other member of the group who all have MS!

I strongly recommend you try something like this out. My group is full of friendly, caring, informative people from all over the worlds, both men and woman of all different ages with all sorts of different MS experiences! Lots of people say that it is almost therapeutic to talk with others who have MS, it helps you realize that you are not alone and it helps you vent because these people truly understand exactly what you are going through! Family and friends can be as empathetic as possible but they still don't truly get that one little thing you are trying to explain, they don't truly understand why you are just ready to brake down do they? Other people with Multiple Sclerosis get it and once you see that it will feel so releiving!

I know it's scary and it's hard, you have kept this to yourself for so long but trust me when I say, it may be awkward at first but after you start talking about it you will soon find that you can't stop talking about it! Letting it all out will make you feel better and can change your attitude which can effect your health in positive ways! And remember, if you join a group like mine, it's private! No one can see what you are saying but other people in the group with MS! After you say what you have to say you just sign off and now no one knows about your MS. It will become a place to turn to when you need to escape your life of secrecy! Of course I would hope that after a while you would build up the courage to let people in your personal life know about your MS but not everyone wants that and I respect that but you should still be able to talk to someone about it and who better to talk to than someone else with MS who won't judge you or get scared off!

So if your interested in giving it a try, click HERE to visit my page about my group where it will direct you how to join. You can always leave if you don't like it but you do need a Facebook account! I hope to hear from you soon so that I can add you to a group of friends who will share a family like sense of community with you!

Progress - Still Learning My Ever Changing Limits...

2012-01-27T13:52:00.000-08:00

Well I had mentioned in the group the other day how I missed bowling and everyone said I should go so today I did. My friend took me down for the purpose of hanging out and having some fun so I appreciate that however, I kind of had an emotional moment. Today I realized that trying to bowl is now pushing my limits... I have bowled several times since I was diagnosed and sure I may not have been as good as I used to be but I was still OK at it and I didn't feel like I was pushing myself too far. This time I sucked at it compared to how I used to bowl and after just 2 games I was exhausted and in pain. My fingers, my forearms, my elbows, and my shoulders. Even my legs got a few shooting pains here and there. I took a Norco a while ago but it's not doing anything.

At first I was worried about my balance but it actually was not an issue at all but what was an issue was my strength and coordination. The ball felt so heavy! Even when I switched to an 11 pound house ball (which I remember using in the past to see how fast I could launch the ball down the lane just for the heck of it) I felt like I was lifting weights and needed a spotter! Towards the end of my last game it was getting to the point where my wrist was just collapsing at random under the weight... I was so frustrated especially because we were right next to a lane full of older guys who knew what they were doing and it sucks because I know that in my prime I could have beat them all but now I could barely hit 100, it was embarrassing...

So I started feeling depressed... I can no longer do something that I used to be really good at. I don't have the fine motor skills to spin the ball just right to make it do what I wanted it to do. But as I was thinking about "poor me" I saw a guy roll by in a wheel chair, his legs were crippled, but he was still doing his thing and I have to realize that though I may not be as good as I used to be I could still go bowling. I can stand and throw a ball and get a score that most "non-bowlers" would be happy to get so I should be glad that I can even do that. It's just frustrating when you can't do something you used to be able to do all the time, your watching yourself mess up when in your head your thinking "but I used to be able to do this no problem".

I am sure if I practiced at it enough I could get better and once I get on some kind of treatment maybe my limit won't be so sensitive. Who knows? I just had one of those moment you know? But now that I have really thought about it I am ready to take in a deep breath and resume my day and take care of business. I just hope this pain clears up a bit, might have to take a cold bath or something, not fun, but some people feel that it helps, I do, it has helped me in the past. UGH forgot to mention, my right arm has been tremoring this whole time as well, not fun! I'll be OK though, I'll be just fine, no room for complaining!

MS Friends - Meet Kane!

2012-01-26T10:12:00.000-08:00

I would now like to introduce my good friend Kane from New Zealand who is also battling Multiple Sclerosis. He runs a VLOG on Youtube which you can find by clicking HERE. For this edition of MS friends I will be playing one of his first videos from youtube where he will introduce himself and talk a bit about his MS. Be sure to check out his latest video by visiting Kane's Youtube Chanel because as you may now, MS can change on a daily basis! So please give a warm welcome to Kane!

I Spoke At Loma Linda University Pt. 1

2012-01-25T18:37:00.000-08:00

It went well! I was holding off to do this post to see if I could get a quick clip but I couldn't so sorry for the wait. Anyways, I will do a Pt. 2 to this posting once I do get a hold of that video clip so for now let me just tell you how it went.

Everyone there was really nice and helped get everything ready from the projector to the microphone to making sure I had water and not to mention food! There were lots of students once they opened the doors, full house! My mother made a quick last minute introduction to me, since this was her school, and then it was my turn to get up and tell my story!

Now I only had 15 minutes which made things difficult because there was so much I wanted to say to these students but so little time to cram it all in there! I tried my best though, I tried to not only share my story and the kind of struggles I have to endure but how having a doctor with no bedside manors really sucked as these were all students that would one day be working in a hospital with people like me. They were physical therapy and occupational therapy students and I wanted to hopefully have some kind of impact, small or large, on their career, maybe I could plant that little seed known as "compassion" that would grow into a full out tree once they made it into their career. Tree... Hmmm... Does compassion grow on a tree or a bush? Perhaps a vine?

Doesn't matter, point is, they seemed to be interested. I am told people typically don't stay past 12:30 the time they are allowed to get up an leave even if a speaker is going over like I was. Not one person got up to leave. People had questions, people came up and talked to me one on one afterwards, it felt good, I was glad to see that people actually cared out there, complete strangers! I was so distracted by this that I forgot to give out my blog URL! How dumb is that! I am up here talking about my blog and how I am trying to use it to help the MS community and I forget to mention the URL! Oh well, next time.

I was asked if I would be interested in other speaking opportunities and I of course said yes. I would love to continue to speak out for MS, for those of us who can't speak out for themselves. I am not afraid to use my voice and if I can make a difference in the way doctors and patients of all walks of life interact than that would be great! So hopefully they will find more speaking opportunities for me! We shall see!

I hope I can get a video clip for you guys soon! Maybe next time I will docent my speaking experience a little better for you! Keep an eye out, thanks for reading!

Progress - Speaking at Loma Linda University Tomorrow!

2012-01-23T16:29:00.000-08:00

You know, I was going to get into this whole venting session and explain how my day sucked yesterday and why it was such a horrible experience but I am glad I decided to wait a day, it was one of those "in the moment" kind of things. Now I am cooled down a bit and realized that yes I had a bad day but it was part of my personal life which does not always belong on here. I had some symptoms flair up because of it all and I was in a bit of pain last night but I have been trying to relax today and it is clearing up ok so there will be no "Bad Day Pt. 2" posting.

I did have the worst insomnia last night though! I would wake up wide awake every 2 or 3 hours and even got up and ate a couple of times because I have had a crazy appetite lately which is odd considering I am almost off the steroids which usually causes me to eat like crazy. Guess that side effect was a tad late this time! I eventually took another Clonazepam after just a couple hours earlier I had taken 2 Norcos and 1 Clonazepam. It helped me fall back asleep but I still continued to wake up every couple of hours. It sucked!

Either way it was a good wake up call (this bad situation I was in) because it reminded me where I stand in life and how I need to be careful with my health and make sure that I take care of myself first so that I can be there for others second or else I will not be able to be there for anyone at all! I wish things were different but this is how they are, this is the hand I was dealt, so I have to make the best of it and see what I can get out of this hand. We live in a one round game and I don't plan on loosing it...

Anyways, been obsessing over the two lenses I am selling on Ebay, the auctions end in just a few hours! I am so close to my $250 goal, I REALLY hope that I can make like $20 more so I can buy that lens tonight! I really, really, really want to start building my portfolio up while I wait for those two jobs to come around so that I can be back on top of my game! I don't like being called lazy by some smug CEO. I'll save that for when the time is right. It will be interesting to see how I get the keywords of my future article to place among Google, sorry Mr. CEO of a company that may be known as METRA, maybe, you picked the wrong guy with the wrong disease to make an enemy out of. Do your research before you talk crap on a disease!

Haha ANYways, tomorrow is the "big day". I have not made much mention of this because I wanted to wait to make sure I had all the details correct but tomorrow, January 24th of 2012, I will be guest speaking at the Loma Linda University in the OT and PT department. I will simply be talking about my story and experience with Multiple Sclerosis so hopefully I can help inspire some students in a positive manor!

Disclaimer: I am not affiliated with the Loma Linda University and my future spoken opinions are that of myself and not of the Loma Linda University.

I had originally wanted to video tape this so I could throw it up here on the web but my camera is just NOT working so I will just have to tell you how it goes, sorry! Maybe this will open the door for suture speaking events and if so I will be sure to try to cover it better! That's it for now, take care!

Symptom Log - Bad Day Pt. 1

2012-01-22T18:22:00.000-08:00

I had a bad day. Well last night was bad then I woke up in a crappy mood which helped ruin my day. UGH! Well I don't want to talk about it right now, point is, bad day = stress and stress = symptoms. Some of these have actually been popping up a bit in the last few days but today made them much stronger and noticeable. Just what I need before school and several photo jobs.

Symptom Log: 1/22/2012

Minor numbness/Pin and Needles in left hand
Random sensations of warmth in right hand.
Random pricking pain on face and neck
Occasional ringing in the left ear
Impaired fine motor skills
Occasional spasms in fingers (mostly mornings)
Pain in fingers and top of hands
Minor drop foot in both feet.
Vision is a tad more fuzzy then usual, using glasses to drive again.
Cognitive fog is the same
Vertigo when I move my head too quickly (Not too bad today)
Difficulty Sleeping (vivid dreams and waking up early)

UPDATE: 2:30am

Lhermites Sign (Feel it in my lower right ribs)
Insomnia (even with 2 Noros and a Clonazepam)
Slight itching
Minor pain in elbow (left)

Current Medications/Supplements

Prednisone 40mg
Gabapentin (300mg)
Citalopram
Lecithin
Vitamin C
Potassium
Vitamin B-12
Calcium (Ran Out)
Vitamin D (Ran Out)

How to Make and Use a Button Aid

2012-01-20T17:25:00.000-08:00

Many of us MS Patients have fine motor skill issues with our hands and fingers making daily tasks a little more difficult than they should be. One task in particular that used to drive me nuts when my fingers grew limp was buttoning my clothing! I eventually learned this little trick after I no longer needed it but I wanted to go ahead and share it with everyone since it can really reduce a lot of stress! I am going to show you how to make and use a buttoning aid using common household objects so that you can avoid spending $10.00-$20.00 for one like below or that you can have something to use while you wait for your actual button aid in the mail! Click on the picture below to be redirected to the website for purchase or scroll down towards the bottom where I will provide a few more links to some others that I have found online!

How To Use A Buttoning Aid

UPDATE: Remade tip so that it forms a
loop rather than a hook because the
hook had a tendency to snag!
See the creation process
bellow the following method!

Step 1

Insert the tip of you buttoning aid through the whole of your shirt

where the button must pass through.

Step 2

Hook the button with the loop of your buttoning aid.

Step 3

Begin to pull the buttoning aid back through the whole.
The loop at the end should allow you to simply pull your tool
straight through unlike using a hook!

Step 4

Pop the button through the whole by pulling your

buttoning aid all the way through.

Step 5

Some clothing is a little tighter then other but your button

should pop through the other end!

Step 6

That's it! Enjoy your buttoned up shirt as much as you

can enjoy a buttoned up shirt!

Pretty cool huh? Well now let's look at how to make one at home if you feel like doing so or making a loved one do it for you! It's easy and takes just a minute or two!

How To Make A Buttoning Aid
(Updated for Loop instead of Hook)

Materials Needed:

Plastic spoon, large paperclip, tape.

Step 1

Begin unfolding your paperclip into a straight line.

Step 2
Bend inhald forming a loop at one end large enough to maybe fit your
index finger into, It needs to be able to fit over a button.

Step 3

Place your paperclip along the handle of your spoon.

You don't want the paper clip's hook to stick out past the handle of the spoon

too much or else it will loose it's durability and bend when you are trying to button

your shirt. I recommend using the thickest paperclip you can find and maybe place the

hook a little closer to the spoon's edge than shown in the below image!

Step 4

Tightly tape your paperclip to your spoon, you can use any kind of tape

here but I recommend electrical tape (gaffer tape) if you have it as it will grip

in your hands better. Duct tape would probably work just as well!

That's it! Your done!

This is good if you are just going through some kind of flair up and want something to help you right at this moment and don't have time to order an actual buttoning aid online. You can find them for decent prices, I have seen one for $5.00 USD but I am not sure how much shipping is or how long it will last. Do a Google search for "Button Aid" or check out a few of the links below! Hope this helps! If you can't buy one you should at least be able to scrap up some of the above materials to make one yourself, better than nothing!

Dual Ended Button Aid on Amazon.com. CLICK HERE

Button and Zipper Aids on ArthritisSupplies.Com CLICK HERE

Maddak Button Aid CLICK HERE

Colonial Medical Assisted Devices Button Aid - CHEAP CLICK HERE

Progress - Thank You! On My Way To Success!

2012-01-19T10:43:00.000-08:00

It says it in the title, it says it in the picture, but still, it's not enough! THANK YOU! Thank you all who have purchased your MS IS BS T-shirts and to all who have made donations in the past few days! As you know I am working on selling a couple of my other camera lenses (figured out how to spell that word by the way haha) so that I can save up and try to get the ONE lens that I do need to pull off this wedding job I have booked. PLUS, I just booked another job for February doing family portraits at a family reunion involving some members who are visiting the states from England! Now I REALLY need to get this lens because I don't have a wide angle anymore! I am so nervous about getting a lens in time but thanks to all of you out there I am just that much closer to my goal! Every penny helps!

I will be buying my lens on Ebay because brand new it would cost me about $500 USD without taxes. On Ebay I can get it for about $250 USD. So far between my Ebay auctions, T-shirt sales, and donations I am at about $180 which means I only need to come up with about $70 before I know I can get my lens for sure! I think I can do that in a couple of weeks! Without you guys though, I would not be able to make this happen so THANK YOU!

I do have ONE LAST MS IS BS T-SHIRT LEFT! It is a large and you can buy it by clicking HERE or by visiting the "MS IS BS" tab up top and scrolling down! Hurry! That sucker will be gone by today I bet! Just $10! Send me a picture of you wearing your MS IS BS T-shirt and I will add you to the MS IS BS family portrait! Haha!

UPDATE: THEY ARE ALL GONE! SORRY FOR THOSE WHO STILL WANT ONE AND THANK YOU TO ALL WHO BOUGHT ONE! I WILL MAKE MORE WHEN I CAN AFFORD THEM AND CONTINUE TO LET THE GROUP SUPPORT GROW WITHOUT PROFIT IN MIND!

Anyways I am feeling pretty good today, I am motivated to start working again if this photography thing goes well. If I could get to the point where I could at least pay my own bills again I would be so happy! If I can make more than that then I will put a small amount into a free spending budget, a large amount into savings, and the rest I will invest into making this blog a better place for MS'ers and helping them with the little things in life that can turn into BIG things since they have done so much for me! I can't wait! It's so close I can taste it! Cherry? Wait no strawberry... No it's cherry....

So I know almost none of that has to do with my MS symptoms but they have not changed much at all. I stopped taking my Gabapentin to see what would happen and so far I do notice some slight discomfort in my fingers where the pain used to be but we will see. Still tapering off the steroids and I did go for a short walk yesterday but got tired pretty quick. I was a tad stressed yesterday so I bet that had something to do with it. Today should be a good day though, we shall see, KNOCK ON WOOD!

Haha so anyways, once again, I just want to say

~~~ THANK YOU ALL! ~~~

THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!

THANK YOU! THANK YOU!

THANK YOU!

Fight MS Memory Loss With Your Phone!

2012-01-18T22:01:00.000-08:00

Well I have been meaning to write this article for a while now but guess what? I keep forgetting! Lol well now I am writing it so that's all that matters, I think, unless I forgot about some other important factor related to this endeavor. Man! Cognitive fog and memory loss are so frustrating! Well aside from all my sticky notes and calendar marking I have found one invaluable tool to fight the memory loss associated with Multiple Sclerosis, my phone! How can you use your phone to help your memory? Well Let me explain!

First of all I just want to point out that I am on an Android phone but I am sure just about any phone should come with this extremely high tech, futuristic, application so you should be fine either way. Now please be careful, this tool may give you some technology shock if you are over the age of 12! Remember, we are in the future! OK, so, what I want you to look for on your phone is called an “Alarm Clock”.

That's right, the alarm clock feature on my phone is what helps be battle one of my worst mental MS symptoms! I am going to show you how I use the Android alarm clock in particular to remember to take care of those "one things" throughout the day! If you don't have an android phone experiment with the alarm feature on what ever you do have and see how it is similar because like any rocket ship out there on Earth, they are all pretty much the same!

Step 1: Find Your Alarm Clock App!

I have a shortcut to mine on my desktop but if it's not there for you than you can find it in your application menue!

Step 2: Open Your Alarm!

I hope I'm not moving to fast for you! Once you click your alarm icon you should see a similar screen to this one. Click the time of the first alarm, it may or may not be checked already but that doesnt matter right now.

Step 3: Set Up The Basics

You should now see the details for this alarm and you will want to make sure that the box next to “Turn on alarm” is checked.

Now click on “Alarm Name” and a box should pop up. I use this to type in a brief description of my alarm or in other words, what I need to remember! Let's say I want to remember to take my medication, at this point then, I would type in something like “Take You Medication!”.

Step 4: Adjust Settings

After you hit “OK” you will return to your alarm's menu. Now just select which features you would like to turn on such as “Vibrate” which will cause your phone to vibrate when the alarm goes of in addition to playing what ever ringtone you should choose!

You can also choose which days the alarm will repeat so if you want it to go off every day you can choose to check the little box next to every day of the week or maybe you just want it to go off on Mondays or maybe Mondays and Thursdays? What ever you want!

Now click “Done" and you will be taken back to your alarm clock home. Here you can add more alarms! Maybe you need 2 or 3 or 7! Just add em' up!

Step 5: Remember

Now your just walking around the house going about your daily routine of forgetting something unbelievably important when all of a sudden BUZZ BUZZ BUZZ! You whip your phone out of your pocket an see this:

Oh yeah! It's time to take my medication! Slide the bar across your screen as indicated to turn off your alarm or tap it elsewhere to set it to snooze. At this point you should go do what ever it is you were trying to remember to do!

Using The “Timer” Feature

You may have noticed while checing out your alarm's awesome home page that on the very top there are two tabs that read “Alarm" and “Timer”. Let's click the “Timer" tab and see what that is all about”.

Oh it's a countdown timer! This could be useful! Let's say you just threw a load of laundry in the wash and you don't want to forget to switch it over into the dryer when it's done! Well that is when you use the simple timer feature!

Step 1: Set The Amount of Time

Easy, adjust the dial to how ever many minutes or hours you want to pass before your alarm goes off.

Step 2: Hit “Start”

I know we live in a world where we are required to include step by step directions on the back of a Pop Tart box but umm... No... Not going to do it.

Step 3: Remember

BUZZ BUZZ BUZZ! Simple huh? Now go switch the laundry or water the cat or what ever it is you have to do!

Progress - Booking A Photo Job! A Wedding???

2012-01-17T14:23:00.000-08:00

Yes, that's right, looks like I am in the process of booking another wedding! I have not been working on pushing my photography services do to my health but someone stumbled upon some of my work (like the photo above which will redirect you to my portfolio) who knew someone that was looking for a wedding photographer. They refereed them to me and they liked my work as well so they want to book the date! Just negotiating the prices and just finished setting up the plans and pricing for their "Save the Date" photo shoot. I will also be handling the creation of the actual save the date cards so that should be fun. Cutting them a great deal because I really could use the portfolio work plus I want to help them out as much as I can and right now I could use something to do with all my free time!

The save the date photo session will be done towards the end of February so they can have them mailed out by March and the actual wedding is more towards the end of the year. Oh, and if all is still set up with the last wedding I did, I will be shooting their larger ceremony in June so that is possibly 2 weddings this year! Good start for not actively putting myself out there! Need to rebuild my website, fix the domain name issue, and get new business cards. Oh, and a new lens....

The lens... Working on that as we speak. You see here is the problem. I have one camera and several lens but when your at a wedding and you need to snap different types of pictures within a matter of seconds you don't have time to sit down and swap lens' especially when you are watching over 300 people! I have a wide angle lens and a zoom lens. When I am using one I can't use the feature of the other so I need something that can zoom out wide and then zoom in at a decent distance. I found the exact lens that is perfect for me but NEW it cost about $500. OUCH! Not bad on camera lens standards but for me that is a little more than a small fortune! On Ebay however I can get it for about $250, $200 if I am lucky! So I am going that route as I know how to find good products on Ebay for great deals.

I listed my zoom lens and wide angle lens on Ebay last night since I won't need them if I can get this new lens because the new lens will be like both those lens' combined! I am at about $120 so far towards my $200 goal! I have $10 in the bank so I need to raise about $70 by mid February so I can get this lens or else I am super screwed because I will only have my portrait lens! But I am pretty sure I will find a way to come up with that $70 by then so I am excited! I really want to do a good job with this couple so that I can get more referrals because that's how you make it in the wedding business, referrals!

So that is my good news! Hoping the bids go up on my lens' and maybe I can find a couple of other things around the house to sell? Wish me luck!

Symptom Log - Prednisone Taper

2012-01-17T10:29:00.000-08:00

OK just realized this morning as I was refiling my Mon-Sun pill organizer that I ran out of Prednisone quick! So I am going to taper down pretty fast so that I don't just stop at 60mg or something. Kind of happy though because I was looking for an excuse to get of this crap as it's not doing me any more help and it's causing my mood swings to go nuts! I hate roid rage!

Anyways, in this posting I want to write down my taper plan so I have it on record somewhere so this is more for me. I Wouldn't recommend trying this because you could react horribly but I myself have learned what I can handle but please don't try doing something like this without a doctors care because you can really mess yourself up! I have done this before and I don't even do an oral taper after IV steroids so I know this looks crazy haha!

This Week's Taper Plan

Mon 16 - 80mg
Tues 17 - 60mg
Wed 18 - 60mg
Thur 19 - 60mg
Fri 20 - 40mg
Sat 21 - 40mg
Sun 22 - 40mg

Symptom Log: 1/17/2012

Numbness/Pin and Needles in left hand
Weakness in left hand/arm
Irritability/Roid-rage
Mood Swings
Impaired fine motor skills
Occasional spasms in fingers (Not as bad lately)
Pain in fingers (Not as bad lately)
Minor drop foot in right foot
Vision is no different than usual.
Cognitive fog is the same
Vertigo when I move my head too quickly (Not too bad today)

Current Medications/Supplements

Prednisone (See Taper Chart Above)
Gabapentin (300mg)
Citalopram
Lecithin
Vitamin C
Potassium
Vitamin B-12
Calcium (Ran Out)
Vitamin D (Ran Out)

Progress - Roid Rage x 100! Loosing My Cool!

2012-01-16T21:34:00.000-08:00

OK, I mentioned the other day that the steroids were making me a very unhappy person and today it is even worse! Man I am so irritable! I am still catching myself say things I don't mean but never in time to prevent it. Much quicker than I was able to many months ago though, in fact, I didn't even recognize most my issue back at that time. Now I can recognize it and control it OK but it is eating me up inside! I just want to yell at someone but I have to stay calm! ARG!

My stress levels are going up because of all this roid rage so I have to be careful or else it will just set me back like the last couple of times I have been on Prednisone. Steroids can bee a good thing for Multiple Sclerosis or a bad thing if they stress you out or make you sick. I wish I could just live in an isolation chamber for a month while on them so I wouldn't have to see or talk to anyone but myself so I wouldn't snap at anyone or hurt their feelings OR anger them! That would be nice....

For now I am just thankful for my noise canceling headphones because they allow me to escape a little bit by drowning the world out around me when I am experiencing sensory overload! Going to take lots of sleepy meds tonight and listen to some classical music while I try to fall asleep. Got to do this right, it's an art I swear!

Oh by the way, I keep forgetting to write this down but since it just happened I'll mention it now. Been experiencing some drop foot randomly throughout the day! Might trip 2 or 3 times over the coarse of a day and this has been happening for a few days now. Right side. Settle but always alarming.... Well that's it for now, need to try to wind down for the night!

OH OH OH, ONE MORE THING. Looks like I have had a bit of a tiny breakthrough with my photography! So I'll talk about that tomorrow to keep you on edge haha! Goodnight!

What Will Living With Multiple Sclerosis Be Like?

2012-01-15T21:30:00.000-08:00

This is a very difficult question to deal with because it varies from person to person. So let's start with what the textbooks say, "most MS Patients live a very long and fulfilling life". Are there exceptions? Of course, there is an exception to every single rule out there so forget about that! Will life get tough? Probably! Will there be suffering? Maybe, maybe not. The disease may hit you hard or it may be in and out of your life. For the most part when it comes to the people I know, they have all lost a little of something and do have restrictions that they have to respect but almost all have them have gained something more to their life than before and the rest are in the process of gaining that same thing as we speak.

I hate MS, I hate it with a passion, but part of me is glad I have experienced it because it has changed me in so many positive ways! I would not be as good of a person today if it was not for Multiple Sclerosis, I would not have met all the awesome, wonderful people from all over the world and from all different walks of life, nor would I have had the opportunity to try to help them all! At first it made me morbidly depressed and bitter towards life and even humanity itself but now I am finally starting to find a happiness that was absent even before my diagnosis!

When I was first diagnosed with Multiple Sclerosis I thought my life was over, I thought I would be bound to a wheelchair for the rest of my life and not be able to do any of the things I had once wanted to do in life. Ironically, Multiple Sclerosis did just the opposite for me! I have done so much more with my life since I was diagnosed with MS because once I got my health in control I realized that I needed to make the most of my time here on Earth and not just waste away in my bedroom! I am living a more active and healthy life now that I have MS than before I was diagnosed! Sure I have certain limitations but I make up for those limits by doing more where I was still strong!

Right after my diagnosis which left me in a wheelchair I worked hard to recover and within months I was out hiking again in the mountains! I have gone motorcycle riding in the desert since I was diagnosed. I took a train from Southern California to San Francisco, I picked up photography and have even shot weddings, and I started working on a novel! I started avidly building this blog and my online support group for MS Patients! I started going to school! I still hang out with friends and even drink here and there on special occasions! MS didn't slow me down, it sped me up and at what cost? A little numbness and vision loss? I can deal with that.

Sure I can't always function like this but I try to consider it like taking a brake from life and as long as I make the most of my time when I am well then I don't always feel that bad about it! I mean, I would like to go back to work and what not but when it comes to me personally, well, right now I am having a hard time with that as I relapse fairly often but recover fairly quickly so it's constantly an on and off thing for me. I could probably blame this on the fact that I have not found the right treatment for me so once I do I'll probably enjoy much longer periods of remission! Others might relapse once really bad for a long time every great once in a while and others might have other varied relapse and remission patterns if they have Relapsing Remitting MS of course. It all depends on the individual!

So yes, Multiple Sclerosis can be unbelievably difficult to deal with at times but once you can truly accept it and learn to control it, life doesn't seem so bad. I have my ups and downs physically, mentally, and emotionally, but I just fight through it, stay strong, and work hard to stay healthy afterwards and be as positive as possible! I don't mean to sugar coat any of this or belittle anyone's suffering because some MS Patients definitely have it worse than others but it's true what they say, most MS Patients live a long and fulfilling life. I have done so much in the last year and a half and I have barely scratched the surface of what I now plan on making of myself and doing for the world. People will remember me, I can assure you, because thanks to MS I now understand life just a little bit better!

Progress - Steroids Make Matt Angry! Roid Rage!

2012-01-15T10:11:00.000-08:00

Let's do a progress update shall we? If I had to some up the last few days with one word it would be "irritable"... I have done a pretty good job maintaining my irritability for the last couple of months while I have been on Prednisone but it seems now that my roid rage is starting to kick in. Maybe it's because this is the first time I have taken 100mg of oral Prednisone but that is not all that much more than the 80mg I usually take. Either way I have been grumpy and I don't like it!

For a while I felt rather care free but now I am slipping back into that "everything annoys me" kind of mood which is kind of depressing because I honestly felt happy for a while and now I am right on the edge of slipping back into my miserable state of being. People, noises, websites, the weather, everything! It's all starting to drive me nuts again! I'm maintaining my balance though and I plan on falling back into a fluffy chair of happiness rather then falling forward over a cliff leading in to a pit of misery. I want to taper off this stuff already but if I go too quickly it will only make things worse! It's just hard sticking with it because the Prednisone is hardly doing anything to clear up my symptoms although, there is no telling if things would be worse for me had I not taken them. My facial numbness cleared up a little bit but not all the way, that's about it....

So just trying to stay calm and not let things get to me, got to maintain my control, and also maintain what ever space I need, something I was not all that good at in the past. Slow, slow, slow, that's the way to go. Trying to focus my attention on building up my blog and making it a more useful tool for my readers which has been keeping me rather busy. I did some updating on my "Basic Knowledge" page which is starting to look better, has all but one article up, and has been revised with some more current writing, so check that out, those articles could use some comments and activity to encourage more new comers to read and learn! Help me help them!

Aside from my almost obsessive blogging I have been doing in the last few days I am also trying to get my photography back on track but to be honest I have not had has much interest in that as I have had with my writing for what ever reason. I had a photo-shoot today but looks like the rainy weather will be putting that on hold. I did add my gallery of photos from my Forest Falls trip the other day, check that out by clicking HERE. Leave comments please, it will make me happy! I could use that right now!

I'll leave it at that but I do want to mention that yesterday was my Dad's birthday, 42! I have young parents I know! We went out to dinner, Italian, came home and watched Jon Stewart and Colbert, did cake, and then chilled! I think he enjoyed himself so just wanted to make my Happy Birthday announcement because if it was not for all the hard work he puts into supporting our family I would not be as healthy or stable as I am today! I'll leave it at that! Make sure to check out my revised "Basic Knowledge" page and my photo gallery of my Forest Falls day trip from the other day, leave me comments and cheer me up! THANKS!

(Matt's Mom and Dad 1-14-2012)

How Do You Treat Multiple Sclerosis (MS)?

2012-01-14T12:27:00.000-08:00

As you probably already know there is not currently a cure for Multiple Sclerosis so what can you do to treat it? Surely you can not live this way for the rest of your life? Well there is some good news, there are plenty of methods to treating this horrible disease many of which some people claim basically to have cured them of MS. Wether or not their chosen treatment actually did cure them of Multiple Sclerosis, it has certainly treated them in such a way that they have got their lives back and there is no reason you can not do the same!

Now as a patient our goal is to eliminate MS but from a medical perspective, since there is no known cure at the moment, the goal is to manage the disease. You and I may not agree with this mentality but this is how the system works so we shall have to play along until we figure out what works best for us personally. So what kind of options are available to us? Let's start with the basic long term treatments, I will simply list them for now and will soon create a more detailed article that souly describes these medications. For now we are just exploring your options!

The Disease Modifying Treatments (Long Term)

Avonex (interferon beta)
Once a week; intramuscular (into the muscle) injection

Betaseron (interferon beta)
Every other day; subcutaneous (under the skin) injection

Extavia (interferon beta)
Every other day; subcutaneous (under the skin) injection

Rebif (interferon beta)
Three times a week; subcutaneous (under the skin) injection

Copaxone (glatiramer acetate)
Every day; subcutaneous (under the skin) injection;

Gilenya (fingolimod)
Every day; capsule taken orally.

Novantrone (mitoxantrone)
Four times a year by IV infusion in a medical center. Lifetime cumulative dose limit of approximately 8–12 doses over 2–3 years

Tysabri (natalizumab)
Every four weeks by IV infusion in a registered infusion center

After choosing a medication that seems best fit for you, your going to try to stick with it as long as possible to see how it effects you. You might have to try a few different treatments till you find what you like! Remember, these are long term treatments designed to reduce the number of flair ups or exacerbations you have in a year so they are not meant to make your symptoms go away rather, they are meant to prevent them from ever popping up.

Short Term Treatment

When you do have a flair up of symptoms you will use a short term treatment to try to clear it up. This involves some sort of steroid to treat inflammation. They really only use two forms of treatment when it comes to this;

Prednisone (Oral steroid)
Solu-Medrol (High dose of IV steroid)

Alternative Treatments

Stem Cell Treatments
CCSVI – Liberation Treatment – Surgical procedure
Low Dose Naltrexone (LDN) – Oral Medication

Other Treatment Methods

Many patients claim that they have discovered their own means of successfully managing their disease without or alongside the use of the above treatments. Wether they don't need them because their treatment is really working or because their disease is reaching a state of remission on their own we will never know but some of the things listed below can't hurt to try alongside your above treatments either way! Just make sure you are going over any plans to make major health changes with your doctor!

Diet – There are many different diets that claim to help MS by reducing inflammation by either taking harmful things out of your diet or adding beneficial items to it or both!

Supplements – Many people believe that adding the right vitamins to your diet can greatly effect the course of your disease.

Exercise and Meditation – Some people claim that through living a healthy lifestyle alone (well usually this is paired with diet” that they have gained control over their MS.

There are other treatments and remedies such as acupuncture that people use to treat specific symptoms such as pain or spasticity but we will save that for another time! For now I leave with this list of treatments so that you can be assured that there is in fact something you can do to control your MS if not basically eliminate it!

Is There a Cure For Multiple Sclerosis (MS)?

2012-01-14T10:27:00.000-08:00

I would be willing to bet that at least 90 percent of anyone who was diagnosed with Multiple Sclerosis while owning a computer with access to the internet conducted a search that went something like this:

“Is there a cure for Multiple Sclerosis/MS?”

The results to that internet search were in fact disappointing unless this is being read in the future because the simple answer to that question as of now is “No, there is no known cure to Multiple Sclerosis”.

There are many people who believe they have found a cure or some way to keep the disease in remission but there is no scientifically proven or accepted way to cure MS as there is currently not even an agreement among the medical field as to what even causes the disease. There are many different theories as to what the cause may be but no one can agree on one single idea and no single theory is totally concrete if you ask me anyways. I mean don't get me wrong, they all have strong evidence and numbers to support them but they all seem to have a little trouble standing alone.

Though it may take some time to figure out the cause and the related cure there are many different treatments available to help control Multiple Sclerosis and if you really do your research you may find a diet or some other homeopathic remedy to concurring MS yourself! It seems that something different works for everyone which can only make one further wonder what the cause of MS is?

More than likely we are looking at a multifactorial disease at work here which would explain why so many different people claim that so many different things cured them of their MS. Though we may not have an official cure for Multiple Sclerosis at the moment many people believe we will see it very soon as research continues to advance in the world of MS so do not loose hope! We are almost there!

Multiple Sclerosis Symptom – Cognitive Fog Pt. 1

2012-01-13T18:17:00.000-08:00

Today I wanted to take the time to describe a symptom that almost all Multiple Sclerosis Patients seems to have experienced at least once in their lifetime if not all the time, cognitive fog or “cog-fog” for short as we call it. This is an extremely frustrating symptom especially because most people just don't know how to describe it or express how difficult it makes getting through the day. I'll try to convert this symptom and the frustration associated wit it into simple words so that maybe you can relate, share this with someone you have been trying to explain this to, or identify an issue you sort of knew was there but really never knew what it was!

So What is Cognitive Fog?

Well a more technical term for the symptom would be “cognitive dysfunction” which is describing your inability to properly allow your brains cognition to run smoothly. Cognition is the process of thinking, planning, problem solving, focusing, recognizing people or objects, even language!

So cognitive dysfunction, or cog-fog, can effect you in many different ways, it's a very general term and may not even cover some of what you yourself are experiencing! Here are some of the more common issues people with MS have with cog-fog:

Short term memory impairment
Speech impairment (finding the right word
Problems recognizing objects
Difficulty learning
Just feeling slow in general

Now again, this is a very broad symptom and can effect so many different areas of your brain it would be impossible to list all the possible effects because you can take each of those impairments listed above and brake them down into smaller more detailed impairments that can also be further broken down and/or branched out into other symptoms because each individual experiences each impairment a bit differently. Some people might have a hard time with names and be fine at remembering terms while others have the opposite problem. Some people might spend a minute staring at a toothbrush while their brain tries to identify the object and others may have never experienced that in their life but instead spend their time staring at a simple word that they simply can not remember the definition of.

What Kind of Cog-fog Does Matt Experience?

Since there are so many weird things I have heard of people experiencing and it would be nearly impossible for me to list them all (not just because of logistics but because I myself have memory issues) I will take the time to try to explain a bit of what I experience because more than likely, if you have MS, you have experienced something similar. In the comments below you can share your personal cognitive functions and I will create a Part 2 to this article going over some of the stuff I left out!

Memory

My memory is horrible but in a very odd way. I have not studied this function of the brain in depth but I do know that memory is not believed to be stored in any one particular part of the brain in full, some bits of memory are spread out in weird places. So maybe this is why certain aspects of my memory are poor and others are great? It's not just as simple as short term and long term although my short term memory is much more effected than anything else.

Let's look at some examples to better explain what I mean. Short term; I may leave my room to complete a task elsewhere and ten feet down the hallway I will forget where I am going and why I am going where ever it is I am going. If you give me a list of verbal directions I will most likely forget each step immediately. In fact, if you tell me anything at all and I am not making a conscious effort to remember what it is you are telling me I will probably forget it. I can be on the phone and talking about a single subject with a friend for half an hour, then the cat jumps up on my desk and knocks something over. I express my frustration and now I don't remember what we were talking about for the last half an hour.

It's not that the information is not being stored, it's that my brain is having trouble creating the right synapse to access that information because all it takes is one tiny thing to remind me where I was heading with my train of thought and then it all rushes back in. Without that reminder my brain can not find it's way back down the right path of information to find that one single fact that it is looking for which is why I believe my long term memory is so much better. Those paths have been traveled so many times that my brain literally (for lack of better terms) has memorized them, etched them in stone, made them muscle memory. I may hear a song for the first time in years and I will be able to remember the lyrics without the slightest impairment. I can remember my way around town or my old school that I have not visited in over 8 years. It is burned into my brain.

Speech and Communication

This one is one of the most frustrating to me personally because I have always prided myself in speaking properly with a natural flow and I have always taken even greater pride in how I write as I view writing as very personal and artistic (not that I express that form of writing here on this blog haha).

It started with my inability to find the right words. I knew what I wanted to say but it's like part of my vocabulary had disappeared. I even knew the definitions of the words I wanted to use but I just couldn’t remember the words themselves! This makes holding a conversation very difficult, I mean, how could it not be when you can't think of a word as simple as “because” or “identified”. Take a look at the “word clouds” below and maybe this will help you visualize the frustration.

Let's say that the sentence I want to say is “When I was at the store, the cashier told me that my credit card balance had exceeded the allowed limit”.

So above you can see the vocabulary used to spell this sentence out. With cog-fog it's a little like trying to speak this sentence with part of your vocabulary missing. So now try to express that same sentence using only the words in this second cloud below and other words to try to substitute for the missing ones.

Tough and frustrating isn't it? And even if you did solve this issue with ease remember, you had to stop and think about it which makes you pause in the middle of a conversation plus, most the time half the words you are trying to find as a substitute for your missing vocabulary are missing from your vocabulary as well so not only can you not remember the word you are looking for but you can't remember the next best word to describe that word! ARG!

Written Communication

Now as a writer I experience a lot of weird things here and there that most people may not ever notice but because I encounter them so often they have become a huge issue for me. When you speak you can hear your mistakes s you make them but when you write you are only thinking about what you want to say and have no way to confirm if you said it properly until you look back and read what you wrote. My days of writing a final draft essay from start to finish without the use of a rough draft are far gone.

Right now one of my biggest issues when it comes to written communication is that I leave out all the suffixes to words even when I am consciously thinking about trying to not make that mistake. So if I thought I wrote “flooded” I would read back my sentence and notice that I wrote “flood”. All the “ed's”, “er's”, “s'”, everything, they are all missing so when I am done writing an article I have to go back and add them all in at the end.

My second issue is that I replace similar words with each other. A common example is when I want to write something like “An elephant is in the room” I will replace “an” with “and” so it reads “And elephant is in the room”. “Or” with “to”, “miss” with “mix”, even “cat” with “car”. So when I am going back over my writings adding suffixes to empty words I also have to replace all the mistaken words like “conscious” with “cautious” you know? I also make many weird grammar mistakes that I never used to make as far as using the wrong words goes but I can't think of any examples at the moment but trust me, I have said some weird things and those of you who are my friend on Facebook probably notice this all the time as I spend less time proofreading while in the middle of a chat.

Recognizing Objects and Routines

This is not a constant issue for me but this happens every once in a while and leaves me standing there thinking “wow, really?”. So sometimes for a split moment in time my brain will not recognize basic, everyday, objects or I will mix them up. For example, countless times I have entered the bathroom with the intention of brushing my teeth but rather then grabbing my toothbrush I will grab a shaving razor and begin applying toothpaste before realizing “wait a minute, this is not right...”

Not sure what to categorize this with but it feels like a recognition issue so this is where I am listing it. There are also times where I will just forget the simple order of life. I will put the milk in the pantry rather then the refrigerator and the cereal box in the refrigerator instead of the pantry. I have even taken the trash from the kitchen to my bedroom before once again realizing “this is not right, it goes outside!”.

And More To Come As Always!

So that is a bit of what I have to deal with on a regular basis but since I have memory issues I guarantee you I left something out! Consider this the tip of the iceberg! So does the term “cognitive fog” make sense now? Dealing with all these tiny issues in real time slows you down and makes you feel slow up in the head. It feels as though you are walking through a room full of fog, your slow and disoriented and things just feel off somehow. Sometimes you can laugh about it and sometimes that one little thing happens that just sets you off the edge and makes you want to collapse into tears because you can no longer control who you are inside your body, the one place you thought you were safe from Multiple Sclerosis, your mind.

If your experiencing cognitive issues the best thing you can do is try to stimulate your brain so that it continues to create new pathways. Play games that are based on puzzles, do word searches, crossword puzzles, read, write, download challenging games on your phone or iPod, anything that makes you think. Your brain is a muscle and needs to be exercised just the same! Sure there are medicatio0ns that can help with certain aspects but just like there are pills to help you gain weight you should try to do some of the work manually on your own, just works better that way.

I would very much like to write a “Part 2” to this article because I know I am leaving a lot out and I know that you all will have lots to share. Please share your experiences with cog-fog below in the comments whether it is a symptom, a funny story, or a frustrating story. I am also interested in hearing about any medications you might be taking to help with these issues or any medications you have heard of that sound like they may help. If you don't want me to mention your name when I quote you in my next article just post as “anonymous” or simply state that you would like me to leave your name out.

I look forward to your responses! I hope that all is well out there!

Progress - I Love Forest Falls

2012-01-12T19:36:00.000-08:00

Yesterday I took a day trip up to Forest Falls, my favorite place in the world. It is so peaceful, so healing! I spent some time taking pictures by the river and then we went and ate at a small Mexican food restaurant in town. After that we went back down to the river and I started collecting rocks for my nature assortment, or, "Zen Zone" back at home (See photo bellow)

I always feel really healthy up there, maybe it's just a rush of endorphins from the joy or possibly the magic healing pours of the mountain air and water, I have no idea but I love it. I stopped by Gilmore Real-estate again and asked about their two bedroom homes for rent as I would love to move up there when I establish some reliable income one day. The woman gave me some listings and I drove by one to just look and dream and it was just awesome... If I was splitting rent with someone it would be pretty darn cheap and Forest Falls is just 15 minutes up the highway from town so it would be a great place for me to live. Get away from everyone and write in peace went I need it or drive right down the hill back to society when I feel secluded.

Anyways, upon getting home my legs did hurt pretty bad haha... They felt kind of jello-ie, maybe because I was climbing around on rocks and crouching down in weird positions to snap pictures. Either way, I had fun, it felt good, and I am happy with my nature assortment now that I have brought a piece of Forest Falls home with me! I'll add more to it over time, one step at a time!

Exercise Your Brain! Fight MS With Your Smart Phone!

2012-01-10T12:58:00.000-08:00

These days a lot of us have smart phones so of course I have to look at this device and wonder "how can this amazing technology that is becoming cheaper and cheaper and more widely used be applied to Multiple Sclerosis?" Now I have lots of ways that my phone helps me fight MS and lots of ways I think it can eventually be used to help in other areas of fighting and managing Multiple Sclerosis but for now let's start with some fun!

A good percentage of MS patients deal with cognitive issues or "cog-fog" as we call it. This can be anything from memory loss to impaired problem solving skills and anywhere in between! So like any other weakening muscle it's important to "work it out" in order to strengthen it! Now no one likes working out but the great thing about working your brain out is you can have lots of fun doing it and not even know you are exercising!

So how can your smart phone help you battle MS? Simple! Download games! I'm not talking about Angry Birds, I'm talking about games that require a little more thinking. First let me present you with a list of some of my favorite brain games I play on my phone and then I'll provide you with a description of each one and an explanation of how I think it can help stimulate your brain unlike some first person shooter on Xbox!

Hanging With Friends
Words With Friends
Word Search
Unblock Me
Chess
Tetris
Robo Defence
Finger Dance

Odd list yeah? Well let me explain because I do beleive that each of these games can help battle your MS in some way shape or form. Some may be better than others but just like exercising with weights you need your heavy, strenuous, stuff and then you need your cool down time. These games should provide both without you even knowing it!

Hanging with Friends

This game is lots of fun, it is basically hangman! You choose an opponent (who can be random or a friend from Facebook) and you make up a word with the provided letters. Your opponent then tries to guess the word with a set amount of tries. In each game your character starts off with 5 balloons, every time you fail to guess a word correctly a balloon pops and your character who is hanging from these balloons sinks closer to a pit of lava! First person to loose all their balloons loses the game but of course you have the option to rematch! Oh yeah, you can also chat with your opponent during the game! Watch the trash talking haha!

To make things more personal and fun each letter you use when creating a word for your opponent to guess is worth a different amount of points. After you create a word the points are added up and set aside. Once you build up 200 points you get 20 coins. Save your coins to customize your character or your balloons! You can also use coins to use certain lifelines in case winning each game is more important to you than looking all fancy and what not!

Lot's of fun, lots of competition, especially when you KNOW your opponent! All the while this game is making your brain think, "What kind of words can I make by putting these letters together? What words can I make using the most high value letters? I wonder what word THEY created? Should I guess this letter? No... Well let's see, after E maybe there is an R or a D". See? Your using your brain but your more focused on outsmarting your opponent and popping their balloons!

Words With Friends

This game is made by the same people who made Hanging With Friends, in fact, it came out first. Don't like the guessing part of Hanging With Friends but like creating words? Well then this is your game because it's just Scrabble! You have a set amount of letter in each round and each letter is worth a certain amount of points. You have to build a word using the letters off of a word that already exists on the board! Once all your letters are gone who ever has the most points built up wins the game! Ready for a rematch? You can play random opponents or a friend from Facebook! You can also chat with them during the game just like Hanging With Friends!

Word Search

Now I hate words searches, I have always sucked at them, even in middle school I remember sucking! I just can't see the words in the mess of letters, I don't know what it is. However, lots of people enjoy word searches and if you are looking to work your brain out this is a good one because they say that doing puzzles like word searches can even help prevent Alzheimer disease! Anyways, I am not sure if there is any kind of multiplayer version out there but there are plenty of single player word searches available for free if you prefer to play a peaceful game alone. I am using an android phone so if you have one as well and are looking for a word search game simply go to your market and click the search icon, then type in "word search" and a list should pop up in order of popularity.

Unblock Me

Now this game really pushes the problem solving aspect of your brain and can get rather addicting because it's one of those "I'm going mad because I am one step away from winning" kind of games. Unblock Me is a simple puzzle game in which you have a board full of blocks. One block is a different color than the rest and this block needs to be slid across the board to the exit. The only problem is there are a bunch of block in the way! You need to strategically slide the blocks in order to clear a path to the exit. Each round gets harder and harder, There are many versions of this game but again, just go for the most popular, that is usually the best!

Chess

Chess is a no-brainer as far as looking for a game that makes you think. As far as thinking goes, Chess is an all-brainer. I am still looking for a version in which I can play friends say on Facebook but I have yet to find one. So for now, I'll settle for an artificial opponent. Some people don't like chess or don't know how to play. There are apps that will teach you how to play chess that are available on the Android Market for free but if you simply don't like the game than try Checkers, it's much more simple but still your using your brain and with these games they're trying to make you think a few steps ahead which is really good for a lot of the types of Cog-Fog we MS patients have to deal with!

Tetris

OK, now I am moving into the more "cool down", fun, kind of games. Tetris is one of my favorite games ever and it makes you think! It's a timed puzzle and because of that "running out of time" element it makes you think a tad differently. A lot of us MS patients feel like our brains are working a tad slower than usual so Tetris is a good way to exercise our ability to try to think quick! If you don't think fast enough then you run out of time and your block doesn't stack right! There are lots of free versions of this game so don't make the mistake of paying for it because the free versions are just as good if not better! I have tried both!

Robo Defense

Now this game is not for everyone, it's called a "tower defence" game and the object of the game is to create a maze of towers (that have different attacking abilities and can be upgraded) and prevent your enemy from making it from one side of the map to the other. Each kill gives you money that you can use to build more towers or upgrade them. Each round get's harder and harder. There are many rounds per level. Each level also get's harder!

This game makes you think even though it sounds like a mindless kind of game. You have to build carefully and create your maze in such a way that it will do the most damage possible to your enemy. Should you build more or upgrade more? This is more of a fun game than anything else but I am putting it on the list because it does require some thinking as far as strategy goes.

There are two versions of this game, the Free version and the paid version with more maps and upgrades. I got so addicted to this game that I bought the paid version just to see what kind of new options there are. Both versions are just as fun so try it if it sounds like you might like it! Takes some time to figure it out but once you do your hooked!

Finger Dance

This game is... Ridiculous... However I realized for some of us, as silly as this game is, it can actually be of great help. Finger dance is just a smart phone version of Dance Dance Revolution, you know, the game where you stand on the pad with the four arrows and dance to some cheesy music?

Now how the heck can this benefit an MS patient? Well besides being silly and cracking a smile, it helps with timing and coordination. You have to tap each arrow just as it passes the marker. The more dead on you are the more points you get.

For me I am having fine motor issues with my hands so to try to tap right on the dot is kind of hard but after playing for a while I started getting it! Timing may be a physical issue but it can also be a mental issue so trying to hit the arrows at the right moment can help in that area of the brain as well! Either way this game is silly and it's just one of those "I need a brake" kind of games that get's old after a while. Still fun!

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So look for these games in your market place, you should be able to find them on both an Android phone or an iPhone. I am not sure about Windows Mobile haha... But try to find the free version of them all, you shouldn't have to pay for any of this even if you have to find a similar version made by someone else. It's all out there and if your going to spend time playing on your phone all day you might as well benefit from it plus when someone bugs you about being on your phone too much you can say "I'm healing my MS!" Have fun!

If you would like to play against me in any of the multiplayer games above than add me to Facebook and when you go to start a new game click "friends from Facebook" and find me!

Progress - New Doctor at Loma Linda!

2012-01-10T10:02:00.000-08:00

(Random Picture I took the other night, didn't really have anything related to this post haha)

OK, so after who knows how long it's been, it's official, I am going to Loma Linda! Now, I know I talked about HOAG for a while but unfortunately with the weird rules of my new insurance I can't go there because I have to live or work within so many miles of what ever doctor I see and Hoag is too far. So I shifted my attention back to the Loma Linda University Medical Center. I set up my PCP there and once I see her I will ask for a referral to the MS specialist they have there. I have heard it's hard to get in with him but his nurse practitioner is pretty well known all around for being really good so I am so hoping that this will turn out to be a positive experience for me.

I did as much research as I could on all the available family doctors at Loma Linda and I chose Dr. Susan Saucedo because she went to UCLA where they are pretty ahead in the research department of medicine, she did her residency at Kaiser and ironically in her profile description she wrote "Dr. Saucedo brings with her a passion for health equity with a particular interest in social determinants of health." Wonder if that interest came before or after spending time at Kaiser haha? Anyways she seems to be really interested in keeping up with the latest in education and since she is young she should be rather open minded rather then set in her ways which is what I need and want. So I look forward to meeting her!

Anyways, just waiting for things to clear in the system with my insurance so I can make an appointment with her. Need to get in ASAP with this flair up and all. Increased my Prednisone up to 100mg (never went past 80mg before) and would have gone up more but don't have anything to protect my stomach. So should be under care of someone for that plus I have had a weird chest congestion issue for a couple of weeks and my mom had brought up walking phenomena so that is something I should be checked for as the Prednisone could have very well made me susceptible to some kind of virus that made it into my lungs. Probably nothing but better safe than sorry right?

Speaking of Prednisone I slept horribly last night. Fell asleep OK but had very active dreams and then woke up wide awake at 4am! I wanted to get up but I knew I needed more rest or else I would pay for it later. Took me an hour to fall back asleep and than I got up at 8am. I kind of look forward to the extra energy, no one likes fatigue, but I am really worried about braking out. Haven't had much of an issue so far but it can get bad for me, I mean, painful all over the chest, back, and of course the face. Don't want to start school that way. Did I mention I got both the classes I wanted for this coming semester? I like this priority registration thing, thank you Disabled Student Services! Haha. After this semester Ill just have to take two anatomy classes, one semester each, then I can apply for the Occupational Therapy Assistant program at Santa Anna, it's a two year program, after that no more being broke! Haha soon, soon, soon.

Anyways, that's it for now. No changes in symptoms really so yeah fingers crossed with the Prednisone. I'll try to write a new article today so keep an eye out!

Progress - Overcoming MS With My Zen Zone

2012-01-09T13:07:00.000-08:00

As indicated with my last few Symptom Logs, I am flaring up a bit and it's getting worse. The numbness on the left side of my head is spreading towards my face and down my neck, across my chest and shoulder only to skip my arm and reappear in my left hand. My left arm does feel a tad weak though... Anyways on top of that I am having issues telling where exactly my left hand is in time and space, well, mostly space. I was trying to clap my hands together above my head and I couldn't do it, they kept missing. If I am looking at them then I can kind of use visual aid to move my hand in the right spot but if I'm not watching where my hand is I miss everything, the light switch, the glass on the counter, my pocket, everything.

This all started yesterday and it put me in a really bad mood. I was frustrated so I grew irritable. Then I made a stop at Walgreens... I used to work at Longs Drugstore and CVS Pharmacy, both drugstores, and walking into Walgreens made me miss working in that kind of little store. I started trying to stack some 12 packs of soda properly and "face" (pull forward) all the 2-litters while my friend was looking through a stack of calendars. My arms felt too weak for the stupid 12 packs and with my depth perception and weird hand location thing I kept missing the slots for the 2 liters. I grew extremely frustrated and then extremely depressed because I could not complete a simple tasks... I want to work so bad.... How the heck am I supposed to work if I can't face a few bottles of soda???

Today I have spent all morning researching doctors and trying to call my insurance to set up a new PCP but apparently everyone at Loma Linda is not accepting new patients even though on their main websites and profiles it says they are. So that kind of frustrated me to. Taking a break from that... I want to see a doctor NOW so I can start a new treatment and get this under control, I want to work so bad! I am so sick of having just $1 in the bank! I need to renew my domain name for my main photography site which I want to rebuild, it's just $10, and I am sitting here trying to come up with a plan to raise just $10. It's pathetic! It's like I'm in high school again! I hate asking for money, I want to be able to pay for tiny little things like that on my own!

Ugh... Well, just got to be patient. "All good things to those who wait". In the meantime I am working on introducing a little bit of Zen into my life. I have a bookshelf under my window and it's rather wide, or long I guess would be the proper form of measurement. Anyways, I am setting up a little fountain, some plants, candles, rocks from Forest Falls (The most peaceful place I have ever been and where I want to move for a while, it's up in the mountains near Big Bear), and soon I'll add a few more things that I feel bring peace and positive energy into my life so I can have a place to take care of and enjoy when I am stressing out. I do love it, it feels good, just these few simple things. I eventually want a fish and more plants, it will be lovely! Do YOU have some kind of Zen spot in your home?

Anyways, I'll leave it at that! Take care!

Syptom Log - Can't Tell Where My Hand Is

2012-01-09T12:40:00.000-08:00

Let's do a quick update as my hand is making typing even more difficult than usual! Numbess spread down to my hand. Forearm feels a tad weak. Numbness on back and side of head spread a little more towards my left cheek. Numbness on neck spread down a bit towards my chest, it's not as strong there but there is a lack on sensation. Oh yeah a bit on my left shoulder as well. Stress levels are up, depression is kicking in.

Symptom Log: 1/9/2012

Numbness on left side of head partial face (left)
Numbness in left hand.
Slight numbness on chest and shoulder (left)
Difficult determining where left hand is in space.
Irritability/depression
Impaired fine motor skills
Occasional spasms in fingers
Pain in fingers (right)
Gate is not the best but not bad at all.
Vision is no different than usual.
Cognitive fog is the same
Vertigo when I move my head too quickly (Not too bad today)

Current Medications/Supplements

Prednisone (100mg)
Gabapentin (600mg)
Citalopram
Lecithin
Vitamin C
Potassium
Vitamin B-12
Calcium

Symptom Log - Woke Up With Numb Head

2012-01-07T20:47:00.000-08:00

Woke up this morning an my head was numb... The back left of my neck, the back left of my head and my left ear. As the night is coming to an end it is slowly spreading down towards my cheek... I can feel that I am touching my skin but it is a very faint sensation as if a dentitst decided to shoot me up with novicane all over my neck, head, and the left side of my face. Also been experiencing a little more pain than usual today most in my right hand's fingertips. One finger in particular has a sever almost itching sensation that comes and goes but mostly just the "I just smashed my finger with a hammer" sensation. My left sciatic nerve is bothering me a bit as well. That's all that's new, vision and everything else is no different than usual.

Symptom Log: 1/7/2012

Numbness on left side of head partial face (left)
Impaired fine motor skills
Occasional spasms in fingers
Pain in fingers (right)
Occasional itching in one finger (right middle)
Gate is not the best but not bad at all.
Sciatic pain (left leg)
Vision is no different than usual.
Cognitive fog is the same
Vertigo when I move my head too quickly (Not too bad today)
Impaired taste

Current Medications/Supplements

Prednisone (20mg)
Gabapentin (600mg)
Citalopram
Lecithin
Vitamin C
Potassium
Vitamin B-12
Calcium

Staying Postive With Multiple Sclerosis (MS)

2012-01-06T14:38:00.000-08:00

Stay positive. Stay Positive. Everyone tells you to stay positive, They tell you the "what" but not the "how". It's frustrating, I know, because I have always struggled to stay positive myself despite the fact that everyone around me is saying "just be positive". "Just be". It's that simple huh? I know what it's like because I have been there and I will more than likely return there after some time. I'm not going to try to make you believe that everything is just dandy for me and that I am always a warm, fuzzy, bundle of joy inside sporting a huge smile where ever I go, I mean, I try to be like that as often as possible, but let's face it, MS sucks, it makes life hard, so it's just not realistic to think that someone could avoid ever having their down moments with this dreadful disease. I'm writing this article to tell you that it's OK to be sad, frustrated, and angry but the key is to get it out of your system and get back to trying to stay positive as long as you can so that you can enjoy your life!

The "What" and the "How"

So as mentioned above everyone tells you the "what" but no one ever really tells you the "how" now do they? Well if you ask me the reason for that is simple. The "what" is universal, we should all try to be positive, but the "how" is unique to the individual. We will all have a different way of finding positivity in our life so what all these self help articles out there should really be explaining is how to find your "how". Most people tell you the same thing, "There is always someone out there who has it worse than you" or "You need to try to appreciate what you do have". Though this may be true it doesn't make you feel any better does it? Well that's because these statement can't be truly appreciated until after you have reached a state of positivity. They help you stay positive not get positive.

How to find your "How"

Again, everyone is different, we all grew up differently, we all developed different personalities and attitudes, we have all gone through different hardships in life, and Multiple Sclerosis has effected all of us differently so it would be foolish to believe that the same recipe would work for us all when it comes to reaching a state of positivity. Most of what people will tell you will have some truth to it but what most people don't realize is that everything needs to be custom fitted to your situation.

What you need to do is identify what you are most pessimistic about and then try to think of why. Write it all down if it helps. Make a list of things that make you sad or angry and then try to come up with the "why" for each of those things. You may not be able to come up with an answer right away but that is good because they key is to get you thinking about it. Now it's time to try to find your "how". You may have wrote down;

"I am miserable because I feel cooped up. Why? Because I never get out of the house anymore."

So like a simple math equation what would the "how" be to this as in "how can I make this better?". Go outside! Now it's just a matter of figuring out how to make your "how" possible! When your feeling down this can be hard because you are more than likely not feeling motivated but if you have it all written down and you know what you need to do then it's just a matter of getting over that first bump in the road that's keeping you from getting the process going. Use your list as a "to-do" list and even if your not feeling up for it mentally make yourself just do it like it's a task. Once you get yourself out there you will probably start feeling glad that you went for it! You just have to take that first step no matter what, just do it!

Example 1: Go Outside!

Now we are going to take the above example and mix it with the "exercise answer" that everyone always gives you. People always tell you to exercise because "When you exercise endorphins are released and they make you feel better". This is true to an extent. First of all the effects of exercise are not immediate, you don't usually feel the effects of all the endorphins until the next day! So exercise has to be a long term and consistent means of feeling better. Secondly most of us hate exercising, I do, I hate it with a passion! So if you are like me, how is exercising supposed to make you feel more positive if you are doing something you hate? It doesn't work! You have to do something you enjoy doing.

So perhaps walking is something you might enjoy? That is what I do! I don't like to exercise because all I am thinking about while I exercise is how I hate exercising but walking in itself is exercising especially if you have MS! The thing is, when I'm walking, I'm not thinking about walking. I use it as a time to think about my life and clear my mind or to simply look at the trees, the birds, the clouds, everything! It let's me get away if even just for just for 15 minutes! Do this everyday and I'm pretty sure you won't feel as bad especially if your problem is that you feel cooped up! Which leads me to my next point, a lot of us are too disabled to walk! I know I can walk right now but that is not always the case! So hop in your wheelchair or your scooter and get out anyways! You don't need to rely on the endorphins from exercising to feel better because if you can just get out and get away from your negativity at home, you will feel a million times better then a few extra hormones will make you! Walk alone or with a walking buddy! Maybe a little of both! Just remember to use that time to clear your mind or think about positive things. It may be tough at first but after a couple of walks you'll find that it can be very much like a therapy for you and pretty soon you will crave your walking time!

Stay Busy

I think another issue with staying positive is most of us have a lot of free time on our hands which causes us to start to think. With all the complications and limitation you may have do to MS you more then likely will start thinking about negative factors not positive. So stay busy to keep your mind from going in that direction! What do you enjoy doing? What would you like to learn how to do? Do you like to read? Do arts and crafts? Write? Find a hobby no matter how simple or stupid it may seem at the time. At one point, I spent my time making an "amusement park" out of toilet paper rolls and cardboard boxes buried under pet bedding in a large plastic bin for my hamster. I know it sounds stupid but it kept me busy and I got into it to the point where I was constantly looking around at everyday objects wondering how I could use it in my 5 star hamster amusement park. Silly, silly, silly, but guess what? It kept my mind away from negativity!

Now I spend most my time writing whether it is working on this blog, my photo blog, or my novel! I also practice photography on a regular basis which is something a lot of people enjoy! You don't need some fancy camera, just use an old point and shoot or even a cell phone camera to start a collection of flower pictures, bugs, birds, lamp posts, anything! Once you start your collection your mind will start thinking about what you can do to better it and before you know it your not thinking about how life sucks anymore! Your thinking about where you can find the next interesting flower around the block! Find a hobby, no matter how silly it may seem, find one and get into it!

Stay Positive

It will take some time to figure out your "how" but once you find it everything will just sort of click. It's hard to explain, it's like when you find it you will start to see life through a different lens that changes the colors of everything around you! Once you find your way to this point your new goal is to stay positive. Remember all those things that people were constantly telling you that might have even ticked you off at one point?

"You need to appreciate what you do have in life"
"There is always someone else out there who has it worse than you"

Well now is the time to start thinking about that. I have lost my ability to walk several times and was even stuck in a wheel chair at one point. I can assure you that I was extremely pessimistic during these times because I wanted to walk and use my legs but I couldn't. Now I can and now I can appreciate something as simple as walking down the street to the park. I could have lost that for ever but I got it back so now I will appreciate that while I can for as long as I can because I know what it's like to loose it and at the same time I now realize that there is someone else out there who wants that same thing but can't have it. They can't walk or maybe they don't even have legs at all... So yes, I am lucky, because there is always someone else out there who has it worse than we do which is why we must learn to appreciate everything that we do have and can do no matter how simple it may be; the roof we live under, the family we have, the clothing on our backs, our ability to dress ourselves, speak, write, what ever it is that you can do, there is someone out there who can't.

And yes, the other side of that coin is that there is always someone out there who has it better than you do, who has more than you do, but thinking that way is what leads to negativity, thinking about what you don't have. The thing is, no matter how much you do have there will always be someone else out there who has more even if you are a billionaire! So that kind of thinking really isn't important, you need to let go of that in order for things to just click for you, because it's true what they say, you don't know what you have until you loose it. MS can cause you to loose a lot, so find a way to enjoy everything you do have because it could be gone just like that which is why it's good to try to appreciate all the little things that you do have because those little things are what become huge things once you loose them.

Go back to that list you created about all the things that you feel are the source of your negativity. Now flip it over and start a new list, on this one, think about everything you do have or can do, all the little things even if it's just the ability to button your shirt! This list should be long and maybe even take up several pages of paper! Now whenever you feel yourself slipping back into a state of negativity look at this list. Read it thoroughly and remember, it's OK to get upset, just get it out of your system and then get back to staying positive!

How to Get Tested For Multiple Sclerosis (MS)

2012-01-05T15:03:00.000-08:00

There are only a few reasons you are looking at this article... Most likely you or someone you love is experiencing some odd symptoms whether they are settle or severe, whether they have been persisting for years or weeks. What could it be? You want to know so bad... You need to know. After doing some research you were led to think that maybe what you have is Multiple Sclerosis or MS as it's called for short. So what is the next step? I'll explain what you need to do but more importantly is why you need to do this.

Most people experience a long diagnosis process when it comes to Multiple Sclerosis. This can be because they are avoiding the tests do to their fear of the answer they may receive or because of a doctor who is simply dragging their feat... Either way I can tell you this, you want an answer as soon as possible because the answer is not going to effect your symptoms, only the treatment you can receive will be effected. If you are afraid of the answer think of it like this, the sooner you get an answer, the sooner you can identify the source of your problem and pursue a treatment. If you put it off you symptoms may do permanent damage or cause you more pain for a longer period of time at the least. Maybe you don't even have MS, maybe once you get your answer it will lead to ending your symptoms all together!

Is your doctor dragging his or her feet? Well then demand that you get these test done, it's your health and you have a right to get tested if for nothing else but the process of elimination in your diagnostic journey. It doesn't matter what the doctor thinks because a test is like an answer key, it will give you the confirmation you need, all a doctor can provide you without a test is an opinion. I know this is hard to believe but doctors are people and make mistakes just the same as anyone else and sometimes they can get a little stubborn with their answer especially when you start demanding to be tested for something they don't think you have. When this happens just stick to your guns and demand that test!

Anyways there are two tests you need to get done to confirm a Multiple Sclerosis diagnosis. An MRI and a Spinal Tap (Lumbar Puncture). Don't let this scare you! It's nothing, really, you'll be just fine! When your done you get to say you were inside an awesome machine, talk crap about how most TV shows about health have it all wrong, and then brag about how you had a spinal tap! It's fun!

MRI

This is what you need to do first, get an MRI of your brain. An MRI can get you an official diagnosis if it looks convincing enough but some doctors may give you a "Probable Multiple Sclerosis" diagnosis. This only means your doctor is being thorough and probably wants you to get a Spinal Tap to confirm. If not push it because even though your MRI may look like MS it could end up being something different that your doctor mistook for MS, it happens! Your MRI might also not show much at all! If this is the case then you want a spinal MRI next, spinal lesions are not as typical (I am avoiding the word common) but lots of people have them so you should push for that if your MRI of your brain looks somewhat normal despite the fact that your doctor is convinced you have MS.

Spinal Tap (Lumbar Puncture)

This is what most people fear. With an MRI you may have some claustrophobia issues to deal with at the worst which they can give you medication to relax for. With a Spinal Tap (Lumbar Puncture or LP for short) you have a large needle involved which they poke into your back to retrieve spinal fluid from your spinal column. This freaks people out and there are rumors that it is the most painful procedure in the entire universe!!!! It's not... It's really no big deal at all. It just takes a few minutes and the local anesthetics are the only pokes you really feel. After that you lean over and they poke you, drain some fluid out for a few seconds and... And that's it. Easy.

Now here is some important information to keep in mind regarding your spinal tap. A positive for MS is a positive, this means you have Multiple Sclerosis for sure. A negative on the other hand is inconclusive. You could have MS but at the time of the test there was no Myelin protein floating around in your spinal fluid to get you a positive. So "they" say to do your spinal tap when you are experiencing a lot of symptoms because you have more of a chance of finding the Myelin protein in your fluids that broke away from your nerves causing your symptoms in the first place. Some people have to have several spinal taps over a period of time before they get a positive test result but in my case I got it on the first try, yay...

Secondly, some people experiencing a headache after the procedure because when you remove spinal fluid you reduce the pressure in your skull around your brain. The fluids replenish pretty quickly in most cases so your headache should go away just fine on it's own if you get it at all. If it last for a few days with a good kick to it then you might want to go back in for what's called a "blood patch" when they inject some of your blood into your spine to balance the pressure back out. You can do this or just ride it out like me!

Anyways, I just want to say this, do not be afraid of a diagnosis. You are battling something that is causing you symptoms right now, isn't it better to know what it is that you are battling? You have to fight this enemy either way so you might as well get a good look at his face and have a better idea of what weapon is best to beat him! Don't put it off any longer, go get these test done! At the least you are just crossing one more thing off the list!

Skype Interview (VIDEO) - How Youtube is Used by MS Patients

2012-01-03T17:51:00.000-08:00

This is actually an old interview that I did back in May of 2011 with Karen, a graduate student at the Catholic University of Leuven (Leuven, Belgium) who is working on a masters degree in social and cultural anthropology. I think I had posted this video collection somewhere on this blog at one point but the link is now gone so I though I would make it into a post that way I could add it to my Q&A page under "Support". So if you have not seen this interview check it out! It's kind of long so don't feel bad if you can't make it all the way through, I need to make a condensed version haha!

Part 1/4

Part 2/4

Part 3/4

Part 4/4

Symptom Log - Intro to My Progress Section

2012-01-03T11:17:00.000-08:00

OK so for a while I had "Progress Updates" on my blog but I stopped them (as far as the label goes) because it was too hard to separate the general stuff from the technical stuff and it was just getting to disorganized. Now as you can see if you click on the "Progress" tab up top it drops down and lead you to "Symptom Log" and "How I Am Doing". My "Symptom Logs" will be purely technical so if you want to see how my health is doing click that! It is also going to be my personal method of keeping track of my health since my memory is so poor especially when it comes to passing time! "How I Am Doing" is an obvious section, that will be more casual, and I'll mention more of everything that is going on in my life and how I'm feeling! So we will see how this works out!

Symptom Log: 1/3/2012

Impaired fine motor skills
Occasional spasms in fingers
Gate is not the best but not bad at all.
Vision is up and down (blind spot) but no different than usual.
Cognative fog is the same
Fatigue is creeping back as I tape off the Prednisone
Sleeping patterns are horrible.
Occupational, random, pains but not bad at all.
Vertigo when I move my head too quickly

Current Medications/Supplements

Prednisone (20mg)
Gabapentin (600mg)
Citalopram
Lecithin
Vitamin C
Vitamin D
Potassium
Vitamin B-12
Calcium

Let's Do This 2012!

2012-01-02T11:40:00.000-08:00

The other day I shared with you some of my New Years Resolutions for the year of 2012 and I realize now that it may have sounded like my health was just another item among the list but really everything (well mostly) can be linked to the goal of kicking Multiple Sclerosis in the butt this year!

Get a new car!
Take control of my health with the help of my new insurance/doctors!
Get into shape, no more being underweight!
Obtain some sort of income if not a job!
Finish writing my novel!
Resume writing meaningful content here on my MS blog!
Create and maintain my list of movies to watch and buy (sound stupid but I'm serious, I have been talking about this for years!)

This will help me regain the sense of independence that MS has taken from me!
This will help me feel in control again!
This will help me feel good about my body unlike MS!
This will add to my independence along with a sense of accomplishment!
This will simply make me feel good about how I spend my time even when I'm out of order!
This will help me feel a sense of purpose!
This really has nothing to do with my MS haha...

Anyways, I had actually got an early start on my exercises routine about a week before the year started, needed to warm up! I walked 3.18 miles (5.11 kilometers) the other day! It was nice! But for the last couple of days I have been slacking as I have not been feeling 100%. I don't feel like I'm getting sick but I have had some kind of chest congestion and I tried going for a walk the other day with it and I just didn't feel so great afterwords. It was horrible last night and this morning and that along with the fact that I didn't sleep well last night made me skip out on exercise today, not a good start!

I did wake up ready to get some stuff done however, I found out what I have to do to take care of my priority registration for classes next semester, got my new health insurance card (so happy about that), and was planning on trying to set myself up with a doctor at Hoag and Loma Linda but today is kind of considered a holiday so I couldn't get a hold of anyone, so tomorrow. I guess I'll spend today working on this blog and my new photography blog!

I have so much writing I want to do! Such a great vision for both my blogs but especially this one! I know what I want it to be but it is going to take some time because I got really lazy with it all in the last 4 to 6 months or so but now I am going to stay focused and make this a place for people to learn and connect! I want it all done now but it is going to take time so as always in life, I got to be patient. Seriously though, if you have anything you would like to see here at MattsMS.Com please leave me a message in the comments below! I'm also going to be asking for people's stories to add to my support section to help inspire others so if you would like your MS story to be published here on this blog please email it to me at mattalleng@yahoo.com. All I ask is that you watch your profanity! Lol thanks!

Another thing I need to do is get my Youtube videos going again, only problem is, I am having some camera issues and my Windows computer (which I use to edit my videos) took a dump so I need to reinstall the OS and figure out if my camera is still good to go. So for those of you who watch me on youtube, sorry, it's going to be a while!

Oh! I almost forgot, I wanted to share that on New Years Eave I drank a bit for once to see how my MS would react. Now I don't drink much, I don't like how most alcohols taste and I don't like what they do to people but I made an exception for this one ocaation. It was lame. I drank 3 large glasses of wine and a couple shots of rum and after that had all settled in I honestly couldn't tell if I was buzzed or if my symptoms were just flaring up. I felt like myself, I was not acting funny, my state of mind did not appear to be altered at all, my problem solving skills were just as sharp as usual, and I didn't feel all warm and fuzzy... I just felt like my vision was blurring a bit and my balance was out of whack... That's how I feel everyday... If that is what getting buzzed feels like then MS ruined it for me because all it did was remind me that I am sick instead of helping me forget about it haha... How does drinking effect you I wonder?

Anyways, time for me to go for now! My fingers are still acting up and typing is annoying because my fingers are spazzing and hitting more then one key at a time, ARG! Hope everyone had a great New Years and please be patient with me as I turn this blog around, I have some great things in mind, and don't forget to submit your MS stories to me by emailing me at mattalleng@yahoo.com Thanks!

Happy New Years 2012!

2012-01-01T01:35:00.000-08:00

Happy New Years everyone! Time for a fresh start! Many people come up with some cheesy new years resolution list but never follow through with it, I know, because I do it every year myself. But this year I have a good feeling about the new digit we have to remember to write down at the end of the date, this year I am ready for some real change! Let's do this!

Have you ever played chess or some other strategy based game where you can see a few steps ahead and realize that something is about to play out in your favor? That's how I'm feeling about life right now. I can't tell you why, I just feel it, this is going to be good. I see a new car in my near future, maybe a few months (since the person who owes me $2,000 finally got busted with the bench warrant I had served so now I get to see her in court on the 17th of February 2 years later haha!), some income, some better health, some happiness! Things look like they are falling into place so hopefully I didn't kust jinx it! So let's look at my New Years Resolution List:

Get a new car!
Take control of my health with the help of my new insurance/doctors!
Get into shape, no more being underweight!
Obtain some sort of income if not a job!
Finish writing my novel!
Resume writing meaningful content here on my MS blog!
Create and maintain my list of movies to watch and buy (sound stupid but I'm serious, I have been talking about this for years!)

I really want to make this all happen, I don't think it is to out there, as long as I remain dedicated I think I can seriously pull it all off. People typically don't fallow through with any of their resolutions not because they have unrealistic expectations, but because they resist the change that is necessary to break their old habits and start anew. I don't have too much of a problem with that and since I want change so bad I will stubbornly insure that I complete my endeavors!

I hope that you all have some positive changes to look forward to and I hope that you all can acheive your 2012 goals! Expect some new content on this blog, I have refreshed it's look and feel and I will try to make it more of a useful tool and source of knowledge for everyone!

Happy New Years!

Merry Christmas!

2011-12-25T10:48:00.000-08:00

Too all my friends

all over the world!

Happy Holiday 2011! Let's Help Those With Less!

2011-12-23T14:19:00.000-08:00

I
t's the end of 2012 and a lot of us are celebrating Christmas or some other holiday but what ever it is doesn't really matter to me! It's time to come together and give! Those of us with MS often hear or say "there is always someone else out there who has it worst then you". This is true but don't get me wrong, having MS is still hard, but since it's that time of the year we should all really be thankful for what we do have and try to give all we can or provide what ever kind of help we can to those who are less fortunate then us! We can't change the entire world, but we can do what ever we can to improve it. Everything makes a difference!

Today I went through all my clothes and put a bunch of older shirts that don't fit or I don't wear into a big plastic bad. I then took that bag down the street to the church where two Salvation Army donation bins rests. Someone out there will be glad to get that clothing, someone out there will appreciate the jacket I gave away, it all helps! My life philosophy is a bit like this: Life is like a pond of water, everyone is floating among it. We all cause tiny ripples in this water that spread out and effect different floaters differently. I want to create the largest ripple possible and help everyone in this world that I can and maybe helping them will cause them to help someone else! I don't want to be famous in life but I do want to have made a difference in the world even if who ever's life I do end up changing doesn't realize that it was me or that I even exist!

Anyways, this simple act of donating took me about 15 minutes and it might end up helping a homeless man stay warm for the winter, isn't that worth the minimal effort? I'm sure there is something you can give up to better another life, something that just sits there waiting to be used. You keep it in your closet because maybe one day you will use it even though you haven't touched it in months! Give it away because there is someone out there with less then you who would love to have it and who will use it every day! Spread your help and joy everywhere you can even if it's just a little! I encourage you to donate something in the next couple of days, you don't have to have a lot, it doesn't have to be brand new, just find something that someone could use that you can part with!

Well, on a separate note, I will be taking the next couples days off from writing for the holidays! Ill still be online so those of you on Facebook will still be able t stay in touch. After the holidays I'll be back! Expect a new look and feel for this blog! I'll be working on that for the new years! I have a lot I want to do and if you have any suggestions feel free to let me know! This blog is for the people so I would love to know what you think! Ill try to incorporate all that I can in my new design!

I hope you all have a happy holidays and Ill talk to you all soon!

Snow Treatment for MS - I Love the Cold!

2011-12-21T20:03:00.000-08:00

Well, it's that time of the year so today I took a day trip up to Big Bear with my friend Cyndi! It was so nice up there! It wasn't too cold but there was still tuns of fresh snow everywhere! The air was clean, no breeze, and it was dead silent, pure peace, and for someone like me who is sensitive to the heat, paradise. I felt so good up there I wish I could have stayed in that location and time for ever! I think the snow is my favorite form of MS treatment there is!

I'm not kidding, I felt wonderful up there! I felt... HEALTHY. I had energy, I was not in pain, I felt strong, I just felt great! I felt like I could breath and be myself! I don't know if it was the trees, the clean air, the cold weather, or a little bit of it all! Mountain Magic! I love it! Of course as soon as I came back down to reality my symptoms all settled back in so there must be something to it besides the elevation difference! I know that one day when I can afford it, the mountains will be my home because up there I feel healthy and that makes me happy. I can't wait for it!

By the way, sorry I have not been writing too often, I am focusing a lot of my attention on my new photography blog. I have not officially launched it yet but you can find it by visiting

mattagphoto.com

So if you have a digital SLR or know anyone who does that would like to learn a little bit more about how to use it or simply be creatively inspired tell them to check it out and like it on Facebook! Thanks!

My Snowman!

My MS Symptoms Are So Sensitive!

2011-12-17T10:37:00.000-08:00

It's really frustrating right now because everything is so sensitive. I see some improvement and then something causes me to back track. Unfortunately my motor skills are suffering the most right now and I hate that because at least with pins and needles or numbness you can still function OK but when your hands go out it's hard to take care of business! When your legs grow weak it's hard to hide the fact that your ill! Of course I can't help thinking about my desire to have money again, a job, to attack school full blast, etc so these back tracks are extra frustrating because not only am I taking a step away from good health but I am taking a step away from my goals in life and then the stress from that causes my health to take another step back and so the vicious circle begins.

The Prednisone is helping but not immensely... As I mentioned above, my hands are suffering the most. The coordination in my fingers is rather lacking and sometimes they tremor but mostly they feel stiff and slow. I have learned to type decently with them like this, in fact, I am starting to forget what it was like to type smoothly and brake free at all which is good for my sanity but probably bad for other things...

Playing piano is not so much fun either, it feels so technical now instead of feeling like a feeling. I can't time the notes properly anymore and I can't just think about the sound I want to produce and produce it. I really hope this get's better because I am starting to worry that it might not and I will be overcome with regret if I loose the function in my hands because I had so much artistic potential that I never fully used.

I am starting to think about more aggressive Multiple Sclerosis treatments... Would it be a good idea to at least try Tysabri for a year to buy me some more time? So that I could have a year to work my butt off, save money, finish as much school as possible, etc? Because I just don't know how I am ever going to move forward at this rate because it's been over a year and I am in no better position now then I was to begin with except that I have more knowledge. If I could use a year to start setting up my life it might not be as hard to finish setting up my life and get me to the point where I have a decent job that I can use to get me disability when I need it. Who knows... I am eager to see some new doctors and see what they think and how they think they should treat me because I am desperate for some change.

Prednisone is Helping, MS and Genetics?

2011-12-16T13:42:00.000-08:00

Well first of all I just wanted to mention that the Prednisone seems to be helping a bit. My walking is much better but my hands are still not back to normal. I can type and do most things as usual but they just feel somewhat stiff and certain motions are hard to do; sometimes my strength slips away... I don't even want to say I hope they get better because that would imply that part of me fears they won't and I can't afford that, I need my hands! I am at 80mg of Prednisone right now and I am about to kick it down to 60mg come Monday. I have also been taking the Gabapentin consistently which seems to be helping a little with the pain although I have been feeling it in my fingers all day today which could be a result of me once again thinking about my lacking financial life. Stress is bad. Perhaps the Prednisone has been helping with the pain as well? Who Knows.

On an unrelated note, I was looking into MS and genetics the other day. Of course this is a rather split theory but many patients believe that Multiple Sclerosis is genetic and then you have other people (professional and unprofessional) who believe that it isn't. When doing a quick Google search I stumbled across this article on About.Com that was talking about the very subject and the facts just kind of irritate me. Here is a paragraph from the website:

"If no immediate members of your family have MS, then your chances of having MS are 1 in 750. If you have a parent or sibling with MS, your risk increases to 1 in 100. If you have an identical twin with MS, your risk is 1 in 4. It is interesting that identical twins do not always both have MS, even though they share 100% of genetic information. This fact is why researchers have concluded that MS is not simply a genetic disease."

So the closer you are to someone with MS the more likely you are to have MS BUT it's not do to genetics because not all twins BOTH have MS. Now I can see how that can be an interesting fact BUT how can you deny that there is some kind of connection here? Perhaps both twins DO have a gene that can cause MS but both twins did not encounter some kind of external trigger there for both twins do not present Multiple Sclerosis? It seems so irresponsible to claim that Multiple Sclerosis is not genetic, I mean, I'm not saying it is I'm just saying it's a complex disease that is probably caused my multiple factors so a small detail like this should not be enough to warrant a definitive answer to the question "Is MS genetic?". It is most likely more complex then yes or no, black and white.

Anyways, I still have to do more research on this subject, I was just curious because I was thinking about whether or not I wanted kids one day. If I didn't have MS the answer would be an easy yes but since I do have MS it is hard... I don't know that I want to risk passing this misery down to another human being let alone my own child. It's scary, I know I would be able to give my child strength to fight MS and what not but is it really fair? Is it selfish to want a child of my own blood at the expense of possibly handing him/her a life of suffering? Or is it selfish to not have a child in fear of this disease and rob that potential life of all the appreciation and joys that they can still find outside of MS? Such a complex decision, not that I am ready for kids at the moment anyways, but it just crossed my mind I suppose.

I Finally Have What I need to Kick MS in the Butt

2011-12-12T11:56:00.000-08:00

Well for now at least, you see, I have had three flare ups in the last 4 weeks or so. I had one steroid treatment (IV) which cleared most of it up until I got a really bad cold which brought it all back and more. I started getting better and then fell apart again! I was not going in to the doctors at this point for what ever reason (probably because there is nothing they could do but give me Prednisone so hmmm... I dug out an old bottle of Prednisone, logged on to KP.org, and requested a refill even though I was all out of refills. Sure enough, they are so careless that a doctor I have not seen in almost a year refilled a new order of Prednisone! I picked it up today and will be starting a taper from about 80mg which should help clear everything that's left all up! Yay!

In the last few weeks I have been dealing with a lot... I could barely walk and when I started feeling better I had to use a cane... My coordination was off causing my legs to shoot all over the place, I couldn't maintain any kind of steady gate. I was dizzy and had all sorts of shooting pain along with numbness or occasional pins and needles. My vision was a bit blurry and I lost my fine motor control especially in my hands. Everything was difficult, even eating which caused me to drop food off my fork which often landed somewhere on me... I was fatigued and even nauseated at some times. Everything was annoying me, I was in a horrible mood, and my sensitivity to noise further enhancing my irritability. I'm sure I am leaving out heaps of symptoms like my loss of taste. These thing have become so natural to me that something as sever as loosing my sense of taste was able to slip my mind like nothing ever happened. Cognitive issues are just a part of life now so I forget to mention them! I can't think, find the right words, and I even slur my speach sometimes! All this I forgot until just now! That's what happens when I don't blog daily but like I said, its just normal to me now...

Anyways I have slowly been recovering but when I say slowly I mean slowly. I can walk OK without a cane now and my pain is subsiding a bit maybe because of the Gabapentin? Can't be sure. I don't feel as numb in my right shoulder area nor do I feel any kind of burning sensation around there. My fine motor skills are still lacking but I can type OK. Sometimes my hands spasm and I click the wrong key or a bunch of keys at once but I can control it OK... It feels unpleasant though... My cognitive issues are still poor but not as horrible as they can get, this I can somewhat control as well but it's also very unpleasant. I think my taste has returned but every now and then I take a bite into something that doesnt quite taste right so certain things may still allude my taste buds.

Since the things that remain are rather faint in severity, I am really hoping that the Prednisone will help clear them up. I have a good amount of it and since I respond so well to them I think if I take around 80mg for a week and slowly taper down it will help a lot. I didn't like taking Prednisone for such long periods of time but I also don't like these flare ups and the possible damage they could be causing to my nerves. I really don't want permanent damage... Hopefully once my new insurance kicks in I won't have to play doctor anymore. We shall see.

The Type Of MS Pain I Am Feeling

2011-12-08T21:44:00.000-08:00

Well I thought I should take the time to explain the pain I have been going through since this is a rather new symptom that seems to be sticking around.

I have always had random sharp shooting pain here and there but by random I mean like once every month or two. Now I am getting them multiple times every single day. Imagine a sciatica in your arm, shoulder, back, temple. I can litterally tell where my nerves are as a result of the pain! Sometimes its settle, ignorable, and sometimes it makes me stop in my tracks waiting for it to pass. I think about when Montel Williams described his pain as someone stabbing a hot poker into his heel and moving it around only I imagine an object sharper, skinnier, and electrified rather then heated. My torturer stabs it deep into the center of a random limb, shoves it in all the way, and then pulls it out all in an instance.

What is completely new is the random sensations of being poked or stabbed with a needle. This can happen anywhere from my leg to my throat and once I even felt it on my eyelid! It's sharp and sudden and makes me jump just like when I would get a shot as a child with my eyes closed shut. Only difference is this pain catches me by utter surprise! Sometimes it's not that bad though, instead of a needle it merely feels like a ballpoint pen and I'm not being sarcastic here, I still jump but it's more out of shock then pain.

Another more consistant pain is in my fingers and sometimes spreads up my hands and even my arms. This pain feels as though someone has smacked the top of my fingers with a hammer and trust me, I know what that feels like. This is more of a radiating pain and sucks more then the last two because it lasts for a while before taking a break plus it come back over and over throughout the day. Sometimes it spreads across my hands and arms and when it does it kind of feels like when you smack your palms or bare feet on the cement,,, Maybe you don't know how that feels but its not pleasent.

Ever had joint pain? Sure you have! Ever had super joint pain? Maybe. Well that's what I got. Mostly in my elbows and knees but what's weird is it will come out of nowhere unlike achy arthritus. I'll be fine one moment and then out of nowhere my knee is killing me! I'll stretch it, crack it, and nothing. Then it goes away... This is some pretty strong pain too and lasts a while as well. Hurts worse in my elbows, usually my left.

Lastly, I finally know the difference between pins and needles and the burning sensation that people sometimes talk about. For weeks now my right arm, shoulder, and back have felt like they were burnt! And not lightly, I mean pot of hot water or really bad, skin peeling, sun burn, burnt! I almost thought I actually burnt myself but my skin was not red or anything! Now part of it is going numb so I know for sure that this is just the MS acting up but this one has been extremely annoying because any time my shirt rubs against my skin I can feel it!

I started taking Gabapentin the other day as I am running out of Norco's and Percocet and I figure I can't take them all day everyday and since this pain has been around for a few weeks I guess it's time to take a long term medication for it. Of course it will take a few weeks to kick in but I'm already feeling the sedative effects... Been so tired and strangely not as stressed... Not sure if the stress part is related or not but either way I'm fine with it!

I Have Lost My Way but I want to Find It Again

2011-12-05T14:30:00.000-08:00

When I first started this blog I wanted to spread positivity and help people connect. Some would say I have done that. I have brought almost 270 MS'er together in my Facebook support group alone and have received numerous emails from people who found my Youtube videos helpful despite the fact that I think they could be done so much better. I had a message and that message helped many but now I am finding that I am lost. I no longer have a clue as to what I believe in. I am loosing faith in people, I have become a morbidly pessimistic person, and I don't like it. Worst of all, I don't know what to do.

I feel as though my life is consuming me and MS is helping it out. I have been struggling in a pit of quicksand for the last few years and I feel as though I have lost all the strength I had to pull myself out. The sand is at my shoulders, my neck, my chin, and now I'm struggling to keep my lips above the surface. How can I help others when I can no longer help myself? I empathize with that picture of the crying clown; his job is to make people happy despite the fact that he is filled with sorrow. Sorrow that sometimes makeup, the strongest persona, can not hide.

"It will get better, it will get better". I hear it all the time but what no one can tell me is how. Certainly not by sitting around and waiting but I can't get a job, I can't get disability, I can't get any kind of help out of this sand pit. Without some kind of yank or push, how am I supposed to free an arm to pull myself all the way out? I am stuck and out of ideas and there is no one out there to walk me though this, tell me how I should approach my situation. I am typically a good problem solver but this one has me stumped and the daily stress that I endure only further clouds my thoughts and ability to figure this out. I feel suffocated by it all, I'm so frustrated!

I think this is the source of my pessimism which I try so hard to hide. Nothing seems to work out for me while I watch everyone around me get the world handed to them. I think I blame myself for the position I am in. Maybe had I not quit my job at CVS I would still have a truck, a job, income, friends, everything. I could go on disability when I am ill but when I am well I could go back to work rather then sit around bored and useless all day. But it's pointless to fantasize of such things, the past is the past, but deep down inside, I can't help but wonder how things would be different.

I have dreams, I have plans, but I am not sure how to move towards them. I have lost all my motivation... Having little to no options does that sometimes. You feel like every which way you go ends in a dead end. It's frustrating and eventually you just want to drop to your knees, cry, and give up because nobody understands 100% of what you are feeling. They can relate but no one can no just what I went through because they are not me with my various tolerance levels, they did not go through the exact career choices as me, did not have the same relationship and friendship issues as me, maybe similar, but not exactly the same. Just as MS effects everyone differently so does life. As hopeless as I can get however, I still know that logically speaking is a waste of time. Emotions and logical speaking never agree but they help keep each other in check. I know the logical answers to all that I am talking about (except how to actually get out of this mess) but what I am sharing with you now is the emotional side to my situation because the emotional side is growing so rich with power that it is overthrowing my reasoning capabilities making me depressed and pessimistic.

I have relapse 3 times this month. Today I have resumed my daily pills and have also added Gabapentin into the mix because the pain seems to be a new symptom that will be staying around. I am not sure Gabapentin will help much but I figured I would give it a try. I need to get serious about my eating and exercising, I say eating instead of dieting because I am noticing that I am not eating as much anymore do to depression and stress. I need to take my life back. I am not sure how but I need to start doing something to at least be healthy and ready to move on to the next step. I am working on a new photography blog. I think I have mentioned it in the past but I never really did anyything with it. I started working on it the other day again so that I could have something to work on that has nothing to do with health and work. I needed a hobbyy and right now this is what I can do.

Visit my new photo blog by following the link below:

http://mattallengphotoblog.blogspot.com/

Be sure to click the "join this site button" to make me happy even if you are not going to follow it, It won't send you email alerts or anything no worries, just nice to see some kind of following.

I'll write about how I am doing tomorrow.

Thanks,

I Am Having a Rough Time

2011-12-03T14:21:00.000-08:00

Well, I know I have not been on top of the updates lately, with the way things have been I should be posting everyday. I just... I am having a rough time. I know there is always, ALWAYS, someone out there who is in a worse situation then I am but that doesn't make my situation hurt any less. I can only compare the pain that I feel to the pain that I have felt. I am so stressed out right now, I have been stressed for a while but I can't handle it anymore and I just don't know what to do. It's not just because of the MS, it's just life in general. What I am most frustrated about is that I can't get a job, I can't afford a car, I can't go to school next semester, I can't move forward. My life is wasting away here in this bedroom. I am loosing my mind. I don't know what to do.

All I want is the chance to work for what I want. I am not asking to win the lottery or anything like that, I am asking for a part time job. I am asking for the opportunity to work for the ability to put money aside, pay my own bills, buy a car, get coffee once a week or go out with a friend. I had it so good before I quit my job at CVS. Sure our store was falling apart after CVS took over (we were actually Longs Drugstore at first but then the evil corporate monster known as CVS took over) but man I wish I could go back in time and tell myself to just suck it up. Since I can't do that I just wish I could find a new job because I can't stand this anymore... I don't know how to relieve and avoid the things that stress me out. I want so desperately to just move into a small house up in the mountain and spend some time alone and letting nature help heal me.

I need to figure something out. I have been saying that for a while now and just keep hitting dead end after dead end which is frustrating because I know I should be able to figure this out, fix this. But now more than ever I need to come up with a solution because it's effecting my health. I am having flareups on a weekly basis because my stress levels are just overloading. Things that shouldn't be stressing me out are causing me to loose it because when your constantly at 100% stress capacity then those tiny things do a lot more damage.

I wish I could write more but I just don't have it in me right now. Maybe later Ill be able to organize my thoughts better.

Guest Blogger Melanie Bowen - Eating The Right Way: Improve

2011-12-01T14:57:00.000-08:00

Eating the right way for life can dramatically reduce your chances of getting terminal illnesses like cancer and heart disease. Even life-changing cancer like mesothelioma can send one down a better path for healing if a patient’s body is strong enough to fight off short-term sickness and extensive cell damage. Nutrition helps us to regain and rejuvenate our bodies—eat the right way and start your journey on the path to wellness and health.

If you're a person that's already suffered from a terminal illness issuance from a doctor, you can still do a lot to improve your health by eating a nutritional diet from the moment of diagnosis and prognosis. The intelligent use of fruit smoothies, green drinks, and food-based supplements can give you a better chance of getting that much needed energy that's used to help fight off the illness while the treatment is knocking you out. The treatment can take a heavier toll on you than anything else. The radiation and chemotherapy of getting a terminal cancer can make you feel completely knocked out. The benefit of good nutrition is that it will give you energy to counterbalance the energy that is being taken away from the treatment. You won't get so drained with the right diet.

Your life expectancy can be improved if you can give the medicine a longer chance to keep working, and you will be able to try out new medicines and do new things like alternative therapies the more time you have. If your energy goes up a lot, then you will have a much better chance of feeling active, alert, and positive during the troublesome, harsh, and scary transition to health from sickness.

You can start by juicing a lot of different vegetables and fruits each day. The National Cancer Institute suggests 5-7 servings of fruits and vegetables are supposed to be eaten each day. The only way to do that easily is to juice them. You can put a lot of strawberries in them, and you can add sugar too. The point is that you're getting the fruits and vegetables you need to get better health. Food-based supplements are also a good component. You have to add those into the mix, and you have to make sure that you're getting plenty of them in order to compensate for all the nutrients that you're not getting because today's fruits and vegetables are so bad for you.

You can also get more energy from taking food-form green vitamins that are composed of several plants are specially grown hydroponically and contain all the necessary nutrients to support life. A lot of good companies make them now, and you should not take vitamins that are not food-based. The safest kind of supplements to take is food-form because they're so bioavailable. Regain you sense of control and start healing.

__________________________

Melanie Bowen is an awareness advocate for natural health and holistic therapies for cancer patients. You will often find her highlighting the great benefits of different nutritional, emotional, and physical treatments on those with illness in her efforts to increase attentiveness and responsiveness on like topics" You can find her blog by visiting http://www.mesothelioma.com/blog/ or you can find her on facebook by vising http://www.facebook.com/MesotheliomaCancer. Enjoy! -Matt

Another Bad Day Wouldn't You Agree Multiple Sclerosis?

2011-11-28T18:23:00.000-08:00

The Answer is "yes", MS does seem to agree that today was a bad day. Waking up early after hardly any sleep, stuck in traffic, everything going wrong, it was one of those "catch every red light" kind of days and the stress was building... I reacted pretty quickly to the stress, well, my MS did is what I mean. My vision started getting worse which is not good when you have a bunch of out of town driving to do. I started experiencing pain and heat flashes, at least I think that's what they were. I would be cold one second then hot the next and every time I felt like I was overheating I had a poking, scratching, burning sensation rush over my skin. My balance feels off, well, pretty much everything feels off. I'm just exhausted and I need some decent rest... I need to dumb some of this stress that has been building for the last few months. Sucks, I don't know what to do, before I was diagnosed with "being single" my significant other and I could leave town for the weekend, go to Disneyland, etc, and that helped a lot but now it seems like no matter what I do I can't leave my stress behind, it just follows me. You would think as good as I am at forgetting thing that wouldn't be an issue but life is not without a sense of irony is it?

Anyways, so what was I doing out and about today? Well I finally made it to the doctors appointment Social Security made me... The doctor was nice and she worked with someone who has MS so not sure if that is going to help my case or not. I had to go to the Sheriff's department in downtown Riverside to turn in some bench warrant information regarding a small claims case I won over a year and a half ago but of course these jerks won't pay up the $2,000 they owe me so bench warrant time. Thing is the paperwork said to bring everything back to the court, the lady I talked to on the pone said to bring it back to the court, and of course, the Sheriff's Department said to bring it back to the court... The only people who said to take it elsewhere, was the court... And that was after standing in line for an two hours. So glad I woke up all early to make it to the Sheriff's department and stand in a crowded hot room full of angry people, I'm talking a 10x10 room full of maybe 20 people or so. And most of them were unhappy...

I also had to turn in my Dial-A-Ride info to Kaiser and get a doctor's note for all the class I missed. Guess what? Kaiser dropped me, again! So I couldn't even do that! I hate them so much and I mean that with all the meaning that the word "hate" has to offer! So that was a waste of time, gas, and money! Not sure what I'm going to do about my class... Ugh. So finally I started my drive back home and I stooped by the court just to see if I could maybe try talking to them again. I knew this would probably not happen because they have like five clerks and about a hundred people to handle at any given moment. I usually have to get up super early and show up an hour before they open to avoid most of the line but there are usualyy about 10 other people with the same idea as me. Sure enough the line was out the building, down the hall, and heading down the stairs. That's a good half an hour before I even make it inside! So I gave into defeat and went home. Maybe tomorrow morning I can get it in.

So as you can see I had a bit of a stressful day and on top of the small flair of symptoms like itching and pain, I have a headache now... Yay.

Worst Multiple Sclerosis Symtom Ever!

2011-11-27T00:03:00.000-08:00

The holidays are here and that means any time you go out and about you are sure to see some cute little couple holding hands and keeping close together to keep warm. So for us singles out there that means one thing: loneliness. Yeah, yeah, I know, I complain about it a lot but I can't help it. As a result of my loneliness I signed up for Zoosk, that online dating site, well, it was kind of an accident. Let's just say you should always be sure that your credit card information is not saved anywhere online because all it takes is one click! Anyways, Zoosk sucks. It's a joke. It's a waste of time. 95% of the people signed up don't actually have a subscription so you can't talk to anyone! This makes the loneliness even more frustrating! You find someone really interesting and you can't even talk to them. I would never, ever, ever recommend Zoosk to any of my friends!

But, I was browsing around and I finally got a reply last night... She seemed like a pretty cool girl, we had a lot of similar interests and hobbies so that was cool. We started talking via email and then I made a mistake. I forgot to delete my signature before I clicked send... My signature contains a link to my MS blog... This blog... So of course I had to explain that it was unintentional and that "I had an autoimmune disease but it's no big deal" (lie). She sent me back a short reply and after that she stopped responding. So I have a new symptom to add to the Multiple Sclerosis symptoms list,

"MS may cause you to become and/or stay single."

Of course, I want nothing to do with someone who would turn their back on me like that because of my MS but I have to say, it sucks just the same. Feels just like regular old rejection to me... MS has shown me the true colors that so many people have hidden within them and I can't help but wonder if I appreciate this or not... I was so much happier before this... Ignorance is bliss right? My EX couldn't handle my MS at first but then we got back together and tried to "work things out". Now I have to wonder, was that because she truly cared about me or was it because she couldn't stand to be alone and was just avoiding her own pain? I think this suspicion is confirmed by the fact that as soon as I stopped talking to her she started seeing someone else... I can't seem to find anyone new myself because keeping this MS BS a secret is tough and I can see a girls interest poof away the moment they learn something is wrong with me.

I know that I will eventually find someone truly special because of this, someone who truly, truly, loves me for me. But it's so hard... I don't even want to go outside right now because it hurts to see all these couples enjoying their lives together... It hurts to know that nobody want to hold my hand... I think I enjoyed life much more before I started seeing people this way. Thanks MS, I'm going to be single for a long time I think.

Doing OK For The Holidays

2011-11-23T11:31:00.000-08:00

Tomorrow is thanksgiving for those of us who celebrate it and I was kind of worried I would still be in really bad shape. But I am happy to inform that I am doing better! I still am about 80% but well enough to get around and not be miserable, yay! I feel like I am over my cold but the sniffles still linger of course which brings about the annoying coughs as well... I won't complain though, after what I just went through I am happy to be where I am now. Best part is I can type at a decent pace again! The laptop keys still frustrate me but I have an external keyboard with a huge amount of feedback in the keys so all is well. I started working on my novel again last night and despite some extremely frustrating formatting issues I would say it felt pretty good. I really want to finish this sucker and start working on one of the new projects I am thinking up.

Finally went back to class yesterday, I guess I didn't miss much. Just need to pick up a doctors note to excuse my absences for the last two weeks or how ever long it was that I was absent. I can drive again as well, forgot to mention that. So I'll be heading out to my buddies house in Pomona this evening, to stay the night. Then tomorrow Ill head from there about 20 minutes down the freeway to my grandparents house where everyone is meeting for thanksgiving. If all goes according to plan I should be able to avoid most the traffic since it will be horrendous on account of the predicted rainfall for tomorrow. Kind of working on my own holiday traditions now anyways and I want to be able to spend it or some of it with the one friend I got.

Oh yeah, be sure to check out this new blog; Why is Life So Hard? It is ran by a girl who was just diagnosed with MS a few months ago. Her name is Sandra, she is 15 years old... Please show her your support!

Well anyways I hope everyone has a happy holiday! Ill be back soon! And I may have my first guest blogger so we will see how that goes! Take care!

The Steroids Worked, That is For Sure...

2011-11-19T22:32:00.000-08:00

Well I have not been blogging for a couple of days and that is for good reason... I got so sick! Granted it was just a cold but it hit me hard and that is probably because the steroids wiped out my immune system. So here's a bit of irony for you, I was having a flareup so I had the steroids to help clear my symptoms, as a result, my immune system was compromised and I got sick. Getting sick stressed my body out causing my symptoms to flare up again... So now I am worse than when I began! Great! Just my luck! I wasted all this time and missed all this class for nothing! This has been a horrible week for me...

So just when my symptoms were clearing up they all flared back up thanks to my cold. In fact, I have more symptoms than I started with and they are more severe than the first ones. My balance is horrible, my coordination is horrible, my legs move funny, my hands and arms move funny, my fingers move funny, my vision is a tad fuzzy, my taste went back out, my depth perception is off, my speech started slurring, my cognitive strength plummeted, and to top it all off I had some pain to deal with... My arms felt like when you slam your palm against the concrete... I also had very sharp shooting pains in my legs and the tips of my fingers. All this from a cold! Last night was the worst but today is not so bad as far as the pain goes. My speech is still slurring and I'm still not all there in the head but I'm not as lost as I was last night, trying to find words or concepts to express myself properly. I hate that so much, More than anything... Except the hug, that was pretty bad.

Anyways I also had some financial troubles with the bank which made my week pretty bad as well. I have this thing called "keep the change" with Bank of America. If I buy something for say $5.75 they round up to the next dollar and put the difference in a separate account, in this case they would put $.25 away. Every once in a while they make a deposit from that account to your savings. I have had this for a while so I have racked up quite a bit of cash, so, when I received a $50 payment I thought, "perfect timing!" and when I received a second $50 payment I thought "even better!" But a few days later after I spent the money I found out that I was wrong. it was not even better. Turns out the second payment was a mistake on their end, go figure, so they took $50 back... except... I already spent the money so there was no $50 to take back... so I had a negative balance... about negative $40, or, "not $40". So now I had less than "no money" as Louis CK puts it... "I don't even have nothing I WISH I had that much!" So... I called up the bank and after being transferred three times and waiting on hold for over an hour I was basically told that there was nothing they could do about it, that it was my fault, that they couldn't just credit the money that they gave me to spend on accident because there is no money to be given, where would it come from? I told them that I was a tad concerned that a multibillion dollar company did not know how to handle a simple $50 transaction and keep track of that small of an amount of money, I mean, if they are making that small of a mistake what's going on with the bigger numbers? She gave me some attitude so I returned it before hanging up on her. At this point I had a bit of an emotional breakdown, not because of the money, I am always broke so I could care less. I was upset becuase it seems as though every time I feel like I have made a step forward life send me two steps backwards. I just can't catch a brake can I?

Luckily I'm catching back up. I had some money in my PayPal account, I received about $25 from an eBay settlement thing in the mail (I guess they were sued for charging too much money on final value fees a few months back and since I used to sell things on eBay I got a little bit of that back) and between those two things I'll be able to get my account balance back up to about a dollar once everything gets deposited. Yay... I am going to cancel my accounts with them though, Bank of America treated me horribly, they messed up, they didn't accept responsibility for their mistake, and their representatives were rude to me. I know it's not like it will make any difference to the company, I don't exactly bring them a lot of business, but I am still a customer and now I am the customer they lost. Off to another corrupt bank!

Hmmm... I thought something else happened this week that made me want to give up on life but I can't remember at the moment what that was which I guess is a good thing. I have been tripping a lot though, that kind of sucks. Almost fell pretty good several times this week... I am seriously going to break a bone soon... Funny, I wouldn't have thought I could do a somersault over my swivel chair before I had MS, but it's pretty easy now even though I didn't mean to do it... Anyways... Just glad my cold is finally not breaking me the way it was all week. Hopefully these symptoms will clear up soon, I mean, as fun as this voice recognition software is (not) I sure would like my fingers to gain some control so that I can type and play that piano again,,, And not have to try to say the word "them" 50 different ways to convince my computer that I am not trying to say "him". THEM. THEM? THEM!

Done With Steroid Treatment - Medical Record is Up!

2011-11-11T23:56:00.000-08:00

Well this is going to be way short! I am done with my IV steroid treatment and I will not be doing any kind of oral taper. I don't think I need it, I have a little Prednisone left that I could take if I wanted to just get rid of it but I don't think it is worth it haha so I should be fine without any kind of taper. Feeling the effects of the steroids starting to kick in so I think by Tuesday I will be ready to go back to class so yeah looking forward to that! Also getting my taste back which is always nice to have! Have not noticed too much change in my hands yet but I mean it takes time for all this stuff to kick in so we will see as the days go by how it all kicks in. I am pretty sure it will all clear up pretty quickly!

Anyways, I got all my medical record up! Well not ALL of them but pretty much all I have done since my diagnosis is up except my vision! I forgot about that till now but I am actually going to have to rescan all that into the computer before I can get that up. But for now I got all my MRI's up except my spinal MRI but that's because they never sent me the results... Yeah... Anyways, I'll have that up when ever I get that in along with my vision stuff because it's always interesting to see how blind I was/am. I have lots of blood tests up and all that good stuff so check it out! You might find it interesting or useful so make what ever you can out of it! You can access my "chart" by clicking "My Medical Record" on the top of my blog or by clicking HERE!

Fighting the MS Flair - IV Steroid 2/3 is Done

2011-11-11T00:00:00.000-08:00

OK two days of steroids are done! Just one more day to go, I hope this whole 3 day gig is enough because usually I do 5 but for what ever reason this stupid neuro likes to go with 3 days not the typical 5 but what ever, better than nothing! i have had a smooth but odd experience this time around though... Usually the metallic taste is much stronger on my tongue from the Solu-Medrol but I could hardly taste it... Not complaining. What's really weird though is usually my veins are really easy to get but for what ever reason both days they have had trouble finding them... Today I was poked on top of my forearm! I have been poked in a lot of weird spots but never there... Must not have been drinking enough water or something...

I also had the worst time trying to sleep last night! I mean it has never been that bad! I know the steroids keep you wired and all but I didn't even start feeling tired till about 4 in the morning! That was after taking 2 Norcos, 10mg of Melatonin, and a Clonazepam! What the heck! I hope I don't have to deal with a part II tonight because I was loosing my mind! I mean on one hand it was kind of nice to not be tired for once but I was sooooooo bored! So we will see how tonight goes!

As far as feeling any better it is still too soon to tell... I mean... I guess I am technically walking better than before but I still can't get around too well... My hands still are lacking much fine motor control but I am able to type very slowly with my hands again as long as I am using an external keyboard... The laptop keys are just too flat! Also' I keep mixing up the apostrophe and comma keys, no matter how hard I focus I keep mixing them up and it's really frustrating so I don't know what's up with that. Stupid cognitive issues! My taste is improving though, that's always good. Before I was just tasting a little on the left side of my tongue but now its spreading (where I can taste) but not all the way yet so if I accidentally chew on the right side of my mouth it still tastes a tad weird.

Ugh, well trying to stay positive! Been lonely as previously noted but trying to focus on getting my volunteering going and setting up some plans with some friends. Not sure what all I can do but I'm just trying to take in a deep breath and take it one step at at a time... All I can do right?

Steroid Treatment Tomorrow

2011-11-08T21:21:00.000-08:00

Well I finally called the infusion center and set up an appointment; 3 days of Solu-medrol, 1,000mg a day, 1 hour a day. Yay steroids! I am actually looking forward to it for a couple reasons. The first and obvious reason is I want to get better! Since I am seeing some improvement with just the oral Prednisone I have been taking the the IV steroids should clear this all up in no time. Secondly I just want to get out of the house even if that means going to Kaiser to get my arm stabbed with an IV! Sad I know, I am so bored that I am looking forward to going to the hospital... Maybe I just want to be around people? It has been a lonely couple of days... Haha...

Speaking of loneliness... I am lonely. More so now that I figured out that my ex is seeing someone new... I mean... Good for her but... Its hard for me... Its funny how one minute all I could think of was the bad times and now all I can think about is the good times... Interesting... Especially since it was I who ultimately broke it off... We are weird, human beings, I mean it shouldn't be effecting me the way it is but.. It is... I had such a hard time sleeping last night because all I could think about was her... I hate this... Its extra hard because I don't have much of a life, much of anything to keep me occupied so all I do all day is think.

So that leads me to the next thing I took care of today: I applied for Dial a Ride. No not for a job, although that would be kind of ironic, but to be able to use their services. If I can get approved for that then I can use it to get down the street and volunteer at the hospital! Maybe not the funnest thing ever but I need something to do with my life so I am not sitting around doing nothing all day. Volunteering will help my life feel more fulfilling, give me something to wake up for, give me something to talk about, give me a place to meet new people' possibility;y network a bit, and it will help out with my resume! So it's a win-win all around I just need to get the transportation aspect knocked out.

Hopefully I can get this going so that I can start rebuilding some kind of life again and maybe the money will follow but for now I just want something to do so that I am not wasting so much time and so that I can meet new people and not come off as a looser haha... If I had something to do I probably wouldn't feel so lonely either, time would not go by so slow. We shall see, but I am going to leave it at that, I typed this all out using my fingers! It took me so long and involved so much correcting but I did it and now my hands hurt!

"What was and what could have been only leads to the present"

Thought I Was Doing Better But Not So Sure

2011-11-07T18:13:00.000-08:00

Maybe I was just trying to make myself believe that I was doing better today and maybe I started to actually believe it but I'm not so sure... The other day I noticed that I had also lost my sense of taste. Fun. My vision has been crossing a bit as well but so far I've been able to control it. My inability to walk seems to be more of a result of the lack of ordination in my legs than the result of poor balance though my balance is still not that great. I am also noticing some coordination issue with my arms and of course my fingers... So I'm pretty useless right now and I have been going crazy for the last few days as a result of boredom. In fact, I finished reading two novels already! I've been doing nothing but sleeping, reading, and listening to music.

Though everything is frustrating walking is the worst or should I say, trying to walk. I tried doing laundry today and that was no fun... I was getting around the house a little bit easier but it is still very difficult. Nonetheless I tried going out for lunch just a bit ago, maybe dinner I don't know, and it went okay but it was still kind of embarrassing. I am using a cane at the moment and I totally almost fell when getting into the car. I also can't walk very smoothly, my legs either dart in front of me to quickly or can't keep up with each other making my gate rather funky. Walking feels ridiculous but I wanted to get out and I did despite the fact that it was kind of embarrassing since the only person that has seen like this outside of my family would be my ex-girlfriend...

I'm going to leave it at that for today, writing is very difficult right now even with this voice recognition software. Thanks for reading!

Another Flare Up

2011-11-02T16:00:00.000-07:00

Well I cannot deny it now, I am having a flair up. Not the worst I have had but it certainly sucks. First of all, I did not wake up until about noon today... I do hate that I've been sleeping in later and later lately but I do have to admit I have not been feeling as crappy when I wake up. Luckily I do not have too much of a life going on right now so I can afford to just let things happen as they happen but I did miss class yesterday and I don't see myself going tomorrow... How would this work if I had a job? If I had more than just one class? I have been falling further and further away from the positive light I once was illuminated by and now dealing with this flareup is simply killing what little hope I had stored up before. I can't take this anymore.

My balance is so bad today that I can barely walk around the house again. It looks like I'm back to bumping into walls and moving at the pace of a snail on a hot summer day lost from all shade. What makes it worse is the vertigo that comes with it... I just can't seem to see straight. I don't know how to describe it properly in words but it is almost as if when I turn my head the world around me takes a few extra seconds to catch up with my line of sight. Once again simple tasks like making lunch or putting on my pants is not only difficult but dangerous. Every move I make no matter how simple it is has to be strategically calculated in order to avoid falling over. I tried digging out a crutch and a cane from the garage to see if that would help me get around better but I am finding that it is making things worse. By using a cane I find myself assuming that I have something to lean on when I am losing my balance but apparently, a cane is just an extension of your arm, and if you're strength and motor skills are impaired well, so is the strength and motor skill of your cane.

Some of you know that I have been rather depressed lately but I have done my best to hide it as nobody wants to be around someone who is constantly down. What people consistently have been unable to realize is that multiple sclerosis is not the source of my depression. I have always had depression issues since my early teen years... I have been on medication for a while and for the most part it has helped me a lot. But now I find that it is not doing much good for me and I assume that is because the conditions of my life do not allow for feeling great even with the help of a happy pill. Antidepressants only bring your chemical imbalances back into what is considered normal balance. Assuming that the medication I am taking has brought me back into a normal balance I could conclude that I am actually depressed for all the right reasons. It is situational.

I want so desperately to have a quote unquote normal life... I want a job, I want to be more active in school, I want a better social life, and I want a healthy relationship, a companion... I miss having that... But I have none of that and I can't see how I will anytime soon. With my health as up-and-down as it is getting back on track in life is only that much more difficult. It would be hard enough without the burden of this disease but with it things seem near impossible despite the fact that I know they are not. But knowing that is not enough. I feel as though I am stuck at a dead end in a large maze that I've been searching through for days looking for an exit only to find myself right back at this same dead-end. I am stuck.

So what am I to do? That is the question of all questions. No one has the answer but me and so it's up to me to find that answer within myself but searching is a skill to be learned. I can break people apart, I can read their actions, their words, and figure them out like a simple puzzle but I cannot do that to myself. Psychologically speaking some would say that no one can but I would argue that we should be able to read ourselves to some degree and be able to learn from what we have read. What clouds my ability to do so? I don't know but I'm tired of all this, it's only been a year and a half, not even, and I am feeling rather broken down. I just want some kind of break in life, something that will allow me to catch up, but apparently that is too much to ask for and so I will no longer ask for it.

Having Some Kind of Flare Up - Loss of Balance and Fatigue

2011-11-01T13:42:00.000-07:00

I don't know what happened but I have been falling apart in the last few days... It all started after I stayed out a bit lateer than usual the other night. It's not like I was doing anything crazy, I went to dinner with some friends and then we hung out for awhile sitting on the couch talking. I got home just a couple hours later than I have been going to bed lately. So what the heck? Maybe it's just a coincidence or maybe not... I don't know but either way the fact of the matter is, I have not been feeling well.

I first started noticing that I was having a much more difficult time waking up than usual and throughout the day my fatigue was dragging me around much more than it usually does. Then I started noticing my balance was a little out of whack. Over the next couple of days it was all getting worse. I was falling back asleep throughout the day and several times I almost fell because of my balance and clumsy legs. Yesterday I had some vertigo manifest out of all this. My head felt like a gyroscope was spinning out of control deep down inside and tilting it either way made me want to fall over... Once again I am finding myself using my hands to guide myself down the hallways and around each corner. The walls serve as an occasional brace for when I stumble or lean too far. I am finding myself dropping back into my bed as I try to stand up from it as if a rope was tied to my chest and someone was pulling it every time I tried to stand.

I pretty much slept all day yesterday and at one point even slept for about 5 hours straight. I thought I would be up all night because of this but no, I woke up around 5pm and was already having a hard time keeping my eyes open around 9pm. I can't remember the last time I felt so tired! I finally got up off the couch around 11pm after dosing in an out of the 6 hour Ghost Hunters Live Halloween special and didn't wake up til about 11am. Today I don't feel any different. Just as tired and my balance is just as bad. I feel really clumsy which is making typing very difficult,,, My vision isn't helping too well either as the blind spot to my left is pretty vivid right now as well...

What the heck!

Well I'll leave it at that for now, I feel dizzy and my hands are not working right so Ill update later. Thanks for reading! (and sorry for any spelling or grammar errors, it's just one of those days.)

Been Noticing More Twitching Lately - NEW Blog

2011-10-28T19:05:00.000-07:00

Well the title pretty much nails it, I have been noting a lot more twitching lately. It's completely random, feels like I am being poked with something causing certain muscles to flex and jump. I have been noticing it in my neck, my cheek, my chest, my fingers, and my leg. That's all just off the top of my head of course, I'm sure I have felt it in other places here and there but it's just as annoying no matter where it is because of the jumping. I'm sure if it happened while I was around someone they would be like "what the heck" if they noticed it. Other than that I have not noticed much else new, I mean, my vision has been a tad more fuzzy than usual but I think I mentioned that before... Having the hardest time waking up which may or may not be due to the intense depression I have been fighting lately...

Anyways, today I decided to start a new blog: http://www.mattallengphotoblog.blogspot.com

I had started this a while ago but didn't like where it was going so I deleted it but I think I know how I'm going to set this up now so I remade it. So for those of you who enjoy my photography be sure to check it out and follow it to make me happy! You can also click "Like" in the Facebook box on the right hand side of the screen, that will make me happy too haha! Ill be posting my various pictures there and talking about some of my "adventures" associated with them. If I talk about the same event here on this blog I'll probably post some links for everyone to see "more pictures" than the single one I usually add on top of each post here. If you have any questions let me know, thanks!

My Current MS Cocktail of Supplements

2011-10-22T11:48:00.000-07:00

I was sorting out my meds for the week when I realized I have not gone over what I am currently taking for a while. The answer is simple: not much... I have been off copaxone for a few months as I wanted to see if I would feel any different. I know it's a long term preventative medication but at one point while I was on it I had two major flare ups separated by just a few weeks right before I stopped taking it. Since I have stopped I have had no flare ups so we will see how that maintains. I have also stopped taking almost all pharmaceuticals with the exception of my anti depressant Celexa (Citalopram) and occasionally Clonazepam (Klonopin) as needed. Everything else I take are all supplements.

Now I have heard convincing arguments both for and against the use of supplements but I have not researched it enough to have my own opinion but I have yet to come across a personal reason why I should stop taking any of them so for now I'll continue my current "regimen". As you can see above, I am not taking too much... Here is my daily intake:

Celexa - 20mg
Fish Oil/Omega 3 - 1,000mg/300mg
Lecithin - 400mg
Vitamin D - 4,000 I.U.
Vitamin C - 500mg
Calcium - 600mg
B-12 - 1,000mcg

And that's it! Is this a good regimen? Not so sure anymore. Is it it a complete regimen? Definitely not! I eventually need to rebuild my cocktail and fine tune it all together but for now this is what I have and this is what I'm taking. I definitely need something new for memory function but I ran out of that a while back... Expensive haha... Hopefully I can get everything together before I relapse again and I REALLY hope that I can work my way back onto the LDN so I can start taking it long term... I'm just nervous that I'll have another reaction to it since I have such a high dose. We shall see. Anyways, that's it for now, take care!

Thankyou MS for Reminding Me That My Fine Motor Skills Suck.

2011-10-19T16:36:00.000-07:00

A couple things I want to talk about today but first let me explain the above picture. So on my last post I mentioned I had an issue with my last job interview that left me rather unhappy. Apparently the computer scheduled an interview for me when it was not supposed to or at least that's what the lady told me. So I showed up ready to go and there was no one there (apparently) to interview me. I was told that the managers would be going through applications to choose candidates this week for a seasonal position and I should hear back from them soon. I have a friend who works for Sears (which is where I had the interview) and he told me that the interview process does not work that way, that the computer chooses the interviews to schedule and then the managers choose from that group. So I got ripped off if you ask me. Why? Not sure, but I probably won't disclose my MS on my next application. Anyways, I missed another interview due to my phone that decided to tell me I missed a call and had a new voice mail about 3 days after it was actually left. Thanks AT&T! So I have not been in a good mood. I have 90 cents in the bank and I am tired of not moving anywhere in life. So I decided to re-apply to become a contributor on a stock photography website and I finally got in with them with this image. So hopefully once the upload process is done I can start making a few bucks here and there shooting some stock images.

Moving on, yesterday Multiple Sclerosis decided I needed a reminder that my hands don't work teh way they used to. I took my Dad's Mustang down to my friends house to change the oil (I don't have jack stands). Our friend Daniella was over because we were all going to go on a "night hike" up in Forest Falls after my friends girlfriend got home. So I am under the car and I already drained the oil into a pan, I could tell my fingers were a little shaky taking out the bolt but so far so good. When it came to removing the oil filter (a round cylinder a bit bigger then your fist full of oil) disaster struck. I lost my grip of the object and dropped it into the tub of hot oil. SPLASH! All over my face, shirt, and arms and RIGHT IN THE EYE! Awesome... So after I wiped everything off I finished the job and proceeded to further wash out my eye of old oil... Thanks MS, now I'm going to get eye cancer...

Of course I played it off like a stupid accident at first because I had not yet told my friend Daniella about my MS but later on I decided to just tell her what was up. Luckily it didn't scare her off haha! We finally went on our little night hike in Forest Falls, didn't get eaten by bears, and then stared up at the stars for a while. Man I want to live up there like right now! Sure would be nice to have a job or at least a real interview!

A Few Symptoms I always Forget to Mention

2011-10-14T16:31:00.000-07:00

I was sitting down the other day, bored, and I experienced something that happens to me every once in a while. I realized that I had never mentioned it here on my blog before or at least not that I remember so I wrote it down on a sticky not before I forgot. Then that symptom reminded me of something else and then something else again! So I just wanted to throw this all out there in case anyone else has ever experienced this before as I always forget to mention it to my doctors and I am not sure if it is MS related or not. Might be good to figure this stuff out though!

First let's start with the weird one... At random I will get a really sharp pain in my temple. Usually on the right side but sometimes on the left. It feels like something the thickness of a pencil is being driven into my head and it lasts for a few seconds before going away. This happens sometimes a couple times a month or just once every few months. I never really kept track of it because it's so quick I just tend to forget about it. I have had this a few years before I was diagnosed with MS by the way.

Secondly I get something similar in my back but much worse. This is also at random, no rhyme, no reason. I can be sitting down watching TV or outside on a hike and all of a sudden an extremely sharp pain shoots down my back just under my shoulder blade. What's horrible about this is that it makes it extremely painful to take in a breath... I'm talking drop to the floor painful. So when this happens I have to take the shortest, tiniest, breaths possible because the deeper I breath the more intense the pain. I sometimes wonder if this has to do with my diaphragm pushing against a nerve or something but I'm not sure. This also doesn't happen too often and has happened to me for years before I was diagnosed with MS so I always forget to bring it up. When it does happen it can last anywhere from a few seconds to a bit over a minute.

This last one is definitely MS related but its so settle I always forget about it but it's worth a mention just so I don't forget that I have experienced this. But every once in a while I'll experience some involuntary twitching. This happens in my hands, my arms, legs, and sometimes chest. It literally feels like I am getting poked with an electric stick. Where ever it hits I jump/twitch. This doesn't happen often so it doesn't bug me too much yet but I'm just hoping it doesn't become an issue...

OH YEAH... My job interview got postponed... I'm a bit angry and by a bit I mean I am REALLY angry but there is more too it I just don't care to bring it up right now. Ill explain later. Take care all!

Going Back To Work With Multiple Sclerosis? Hopefully!

2011-10-10T21:11:00.000-07:00

Well, I may have mentioned before but tomorrow I have a job interview! I am really excited as I have been out of work way to long now... More exciting then possibly having a steady income again, being able to support myself, and officially start my life over from scratch is the fact that if I do get this job I will finally have a sense of actual responsibility in this world again. Sure, it's nothing serious, a retail job is a retail job, but when it comes to living with something like MS that can take your ability to work away, that daily routine job suddenly seems like a huge source of a sense of accomplishment along with some self-worth that may not have been noticed before the onset of MS in such a "grunt" job as some would call it. Will returning to work after over a year of disability preceded by another of unemployment be difficult? You bet. DO I look forward to it? No doubtingly.

Though I can't lie... I am very nervous of working with my symptoms... I am in no better shape now than I was during certain points of my "disability benefit days"... My hands are still weak, my fine motor skills are still pretty shot, my vision still comes and goes, I still fight fatigue, and my balance is still not the greatest... Only difference is not I don't care. Now I just want to work. I am so sick of collecting welfare and hoping that a check will possibly come in the mail. I want to work. I want to work. I want to work. I want to earn my own money and earn my own life. I don't want to live stuck in the house, I am too young for that, I just can't do it without going insane!

Maybe working will help my healing process, maybe moving around, working my brain a bit, being social, and seeing that check at the end of the week will be enough to help keep my spirits up and health in check. Who knows? What I do know that if I can keep this possible job I'll be saving the bulk of what I make but for a new car and possible future relapses but I will still definitely have some money put aside for myself and my relaxing trips up to Forest Falls because that is definitely a source of healing for me! Regardless I think it will just feel good to pick my bills back up and not have to make my parents cover me anymore... Hopefully Ill make enough sooner or later to start "returning the favor" or in other words, pick up some of the slack around here.

I am of course getting a bit ahead of myself, this could just be a seasonal gig that might come and go but since I know maybe 3 or 4 people who work at Sears I am hoping that if I do really well and get good with the managers that I will be able to keep the job or transfer to another store. Fingers crossed! Just wish me luck everyone! Ill post again soon!

Cognitive Issues!

2011-10-06T19:18:00.000-07:00

Major Writers Block - Been keeping the MS on the Down Low???

2011-09-26T12:03:00.000-07:00

UGH! I have had the worst writers block for like this past for ever! The problem with writers block is the less you write the harder it is to write anything longer then a paragraph. The longer you go without writing the harder it is to resume writing! So by not writing I am making it harder and harder on myself to actually write! I think you get the idea, simple concept haha! Anyways, sorry... I used to be so good about writing every day! I don't know what happened! I know part of it was not feeling good and then being tired, and then school, and then I have been going out lately, and even though that all ultimately made me feel better I think it pulled me away from writing long enough that it made it really hard to get back into the motion of it all. Got to start of light again, just like exercising!

So lately I have been going out a bit more as I have mentioned a few times and been trying to meet some new people. Since I have been getting out more I swear I am feeling so much better again! I mean I don't feel all super amazing but I feel way better than I have in months! Now I have to be careful here because I want to say that I only am experiencing a few symptoms that are hardly even noticeable BUT I don't know if that is completely the case or if I am just getting used to my symptoms more and more every day to the point where I feel "normal" now even though 6 months ago I would have said I feel like crap... Hard to tell...

Either way, the only physical symptoms I am really noticing is my sensitivity to cold objects on the right side of my body (which has never gone away since the start), my balance is probably a little out of whack still, and I still notice some fine motor issues in my left hand here and there. Oh, and depending on the temperature or how much strenuous activity I do, I get a little Lhermites Sign here and there. But none of this really even bugs me anymore, so physically the only thing bothering me is that stupid planters wart in my foot that refuses to die! That's not even MS related! So I guess that's all good. Still have all the cognitive issues though, that hasn't got much better and my sleeping patterns are still all super crazy... I kept waking up all through the night last night.. Then I woke up wide awake around 5:30 and stretched out in bed for about half an hour. Then next thing I knew I woke up at 9:30. So between 6am and 9:30 was my best, most consistent sleep I had all night...I feel a little achy today thanks to that but it's not the end of the world.

By now your probably wondering what I meant in my title about "keeping the MS on the down low"... Well those of you who know me know that I am not in any way shape or form ashamed or embarrassed by my MS (why should I be?) and have always been open to share my experience with anyone. Lately though now that I am going back to school and trying to meet new people I have been keeping it to myself. Again, I am not trying to hide it, but, I am trying to introduce myself to people as "Matt the Photographer" not "Matt the MS Patient" as to better manage my first impression with people. I want to make friends who like me for who I am as an individual not because they feel bad for me or anything like that. Once I get to know people more closely Ill eventually tell them but for now I am keeping it on the down low to see how it all goes haha.

Before I go I'll explain the top video. We all went out to the desert the other night to try and see the falling satellite (UARS) and though I did not capture it with my camera we did see a piece of it burn across the sky and it was pretty cool! The video is just a collection of images compiled together to basically create a stop motion video of the clouds and stars moving across the sky. Just experimenting so I didn't have my shutter release button or my laptop to be more consistent with the timing. I was just walking back and forward from our fire to my camera hitting the button here and there which is why the video is not smooth like it should be haha so next time Ill get a more professional shot but I still thought it was cool. That's what I did the other day. Take care all!

Feeling Better but No Appetite, Attitude Power!

2011-09-23T14:04:00.000-07:00

Well I don't know what did the trick but I have been taking my vitamins, taking my happy pills, getting out more with some friends, moving around more, etc, etc and now I am feeling much better. I have been sleeping a BIT better, I am not waking up all achy, I have not been as depressed, and I don't feel as fatigued. I still feel kind of irritable but not as bad... So I am trying to keep this phase going as long as possible so I can focus more energy on getting my wedding photography off the ground because I am ready to start supporting myself again! SO SICK of being broke!

So once again, I am going to mention one of my prime beliefs in fighting MS. Attitude. Getting out and being social has made me feel better on the inside and as a result I believe I am doing better on the outside. I feel more pumped up to get up in the morning (well I still sleep in a bit haha) and feel more energetic during the day, almost restless, because I want to get out and do something! I love the outdoors so having been able to get out into the mountains and what not lately has really helped me release some stress. All this is molding my attitude from a lump of pessimistic clay into a sculpture of optimism once more.

Now this is creating a bit of a paradox again though so I am trying to be careful... You see now I am motivated to get out and do more but I have no money! So now I am getting frustrated that I have no income, no job, and no car of my own! So now I am working harder to try to get that ball rolling but it is something that will take some time and right now it's hard to be patient...I hate being the one guy in the group that can't always even pay for his own dinner... It's lame...

A few days ago I was able to scrounge up just enough for dinner but now I have like $1 in my bank account haha and the other day I was able to pay for dinner because I left the casino with a couple of extra bucks. No, no, I didn't risk my own money, I got $10 on the slots for signing up for Morongo's Club Card thing. But now once again I am flat broke and I hate it. I wish I had just enough to chip in for gas to go somewhere or something like that!

You know what no, no, no... I want more than that. I know I can work hard enough and I know I deserve to have enough money put aside that if I want to go out for dinner I can spend the whole $10 without worry. If I want to go up to big Bear or visit my friend out in Pomona I can throw the $20 into the gas tank without having to rearrange my entire month's funding plan. I feel like I deserve just a bit of that and I am tired of waiting to get to that point! I need to figure this all out and soon! So I apologize for not writing as much but I have been so focused on trying to figure out my financial situation and how I can start making some REAL money as a photographer...

Oh yeah, about the picture above... I had a soda for the first time in almost a year... It was not as good as I remember it being... When you stop drinking it for a while it just looses it's appeal when you try it again. Anyways it was a one time thing. I like not drinking soda and that's how I am going to keep it!

Got outside today! So far HEAT has not effected me...

2011-09-19T19:58:00.000-07:00

Well got outside today that's for sure! Took a drive up an old access road to Idylwild with my friend Phill in his old Jeep. It was about 90 degrees Fahrenheit at the bottom of the mountain and not too much cooler at the top (technically speaking) but it felt like day and night. Between the wind and the Forrest trees it was nice and cool up there! Surprisingly despite the heat I am not blind! Well not yet...

I kind of feel like the heat does not effect me as poorly if I am out having fun, being adventurous, and getting outdoors. Oh and by outdoors I am talking about a little bit further and higher than my front doorstep. Maybe it's the fresh air, the elevation, the feeling that I have left all my stress behind? I don't know... I just love it and yeah, yeah, yeah, I know some people think that high elevation is bad for MS but there are so many theories out there it's not even funny... Going outside will give you MS, staying inside will give you MS, this will, and that will. What ever... I think it's best to just do what makes you feel good and at this point I am ready to move up to the mountains. Get some nature in my life, some seasons, some SNOW! Maybe even a sense of community? Haha who knows!

First I need a new truck... Well that's it for now, so tired! Thanks for reading!

Help Me Get Rid Of All These Shirts!

2011-09-18T17:46:00.000-07:00

Haha so, at first it seemed like lots of people were interested in a simple MS IS BS T-Shirt but I did not get the response I was expecting, AT ALL. SO, I cut the price in half and now I am just trying to make SOME of my money back because there are much more important things I need to pay off haha, being broke is not fun :(

Anyways, you can find them on the store tab up top or by clicking my picture on this posting to your right!

I will ship anywhere and do what ever I can to get you the lowest rate possible' if your are ordering multiple shirts please email me first because I may be able to ship for cheaper then what the calculator is going to tell you.

Thanks all! Look forward to seeing your pix of you in your new MS IS BS T-shirt haha!

-- mattalleng@yahoo.com --

Sorry, I have been a bit of a ghost lately...

2011-09-16T13:13:00.000-07:00

I have not been feeling well lately...
I wanted to blog today but I just can't get myself to write...

so here is a quick video for now.

Foot Issue not MS Related After All!

2011-09-04T14:37:00.000-07:00

So I finally got into the doctors yesterday, the bump on my foot was just killing me! Since I had nothing better to do I figured I would finally knock it out of the way. Went to urgent care and was in and out pretty quick or maybe it just seamed that way because I dedicated my entire day yesterday to finishing a novel I have slowly been reading for the last two months. Spent hours and hours trying to finish it and I did. Anyways the doctor came in, she looked at my foot, and instantly was like "this is a planter wart". Haha wow, I can't believe I didn't recognize what it was! I had warts on my hands growing up in hi school and I had them bad so I should have known!

She busted out the good ol' liquid nitrogen and for a while my foot felt like there was nothing there. Today of course the pain is back but I just bought some duct tape which is supposed to help kill the wart by robbing it of oxygen. So now it makes sense why cutting off that bump twice on my own didnt do anything. With a planter wart the root grows deep into your foot rather then producing a large bump above the skin. You can remove the bump but the bulk of the wart is actually under the surface of your foot causing more pain than most warts. So like a weed in your yard you have to kill the root or else it will just keep growing back. If this is anything like the warts I had in hi school the one burst of liquid nitrogen will not be enough. I had gone in several times and had constantly been using over the counter products before they finally decided they had to burn them all off which was extremely painful as they were all mostly on the joints of my fingers so the healing process was not so fun!

So in order to avoid reliving my past experience with warts I'm going to be as aggressive as I can with this one so that I can avoid having to go back in and spend more money. I'll be using the acid, the freezing kits, and the duct tape along with a razor blade to get me closer to the root again haha. Good thing I have lots of pain killers left over! I need this thing gone so I can start going on walks in the morning! I'm really hoping I can get rid of this sucker ASAP and for as cheap as possible hah!

Hope you and your feet are not Squeamish!

2011-08-31T11:53:00.000-07:00

So before I get to the good stuff let me apologize for my lack of blogging... Again... There just has been nothing to talk about! I want to get back to writing some more "educational" stuff but the 105 degree weather here in SoCal has just been draining me... I have been so fatigued lately and just sleeping all day... Anyways, the good stuff. About a month ago (or around that long ago) when I had my really bad relapse I guess my foot went a little numb without me realizing it. During that time I guess I stepped on something that decided to stick around. I didn't realize this till after my exacerbation had cleared up and I started feeling a sharp pain in my foot. When I checked it out I had a very distinct bump on my foot like there was something under my skin. I thought I had somehow stepped on a small rock or something because it was about the size of a small pebbel and even though I had not been outside it just felt like that was what was under my skin since the bump was so firm. This is one of the many reasons I don't like walking around barefooted...

So at first I paid little attention to this as it only hurt when I walked on it and since I am rarely out and about and mostly spending my time in bed or sitting on a chair I usually just forgot about it. Plus I figured my body would absorb or push out what ever it was that was stuck in my foot, no big deal. But over the weeks the pain just got worse and worse so finally I decided I was going to cut it out myself. I didn't want to go to the doctor and pay money to have him refer me to someone else to cut it out and charge me more cash when it looked like what ever it was wasn't that deep. I have cut out pretty thick, deep splinters of wood and metal many times before and this, this thing was way closer to the surface then the other things I have dealt with in the past. Plus I used to have these special razor blades for a box cutter that I used to use when I sold motorcycle parts and they were so sharp that I had on several occasions accidentally cut a ruler in half when trying to cut in a straight line. Unfortunately I could not find them... So I got a regular razor blade, extras sharp tweezers, gauze, a band aid, and plenty of alcohol to disinfect everything.

As I cut into my food removing layers at a time (since the blade was not sharp enough to cut straight down into the thick callus of my heel) I was expecting to eventually feel my razor blade rub against something hard but... I didn't... I had removed the entire bump and even created a small "crater" and there was nothing there... I could now see that instead of a dark object under my skin there was a light, yellow, discolored spot... I tried cutting into it but the the razor was not sharp enough to slice through the delicate part of this unprotected skin. I now was under the impression that there was nothing under my more delicate, sensitive, skin... But one thing was clear: no rock... More than likely I had stepped on something sharp and since I was on high amounts of immune system suppressing steroids it had probably grown infected especially since I never noticed I had punctured my foot so I never cleaned and disinfected it.

So I wrapped it up and figured maybe since I had cut off the bump and exposed the sensitive part of my skin that maybe my body would clear up the infection while it repaired the area. My foot sure did hurt a lot less when walking around now! But a couple of weeks later things were back the way they were. Big bump and lots of pain. It was getting unbearable actually... I just so happened to have bumped into my case of razors that I was talking about earlier so I decided "OK, one more time" as I really didn't want to spend the money. Got everything ready and opened the case of razors.... Empty... What the heck.... I was in so much pain I decided "screw it, this has to end". So I got the crappy razor back out and cut away again. This time when the bump was flat and I could see the yellow spot on my foot I began cutting into it using a "sawing" motion since the tip was not very thin or quite sharp enough to puncture well. It worked, I got deeper and deeper expecting some kind of nasty puss to spew but instead it was just blood...

What the heck again! This made no sense! So again I wrapped it up and since have been applying an antibiotic cream and taping a folded square of gauze to keep it covered and cushioned which helps the pain a bit when walking but once again its becoming unbearable. If I take a couple Norcos the pain actually goes away but since I have not taken Norcos for a while it makes me a tad loopy or just flat out tired. So now I have to make an appointment to get this taken care of because it's been going on for far too long and I need to figure out what the heck this mystery bump is and get it removed so I can walk like a "normal person" again.

So yeah, this has been an interesting experience, can't believe I keep forgetting to talk about it but like I said, when your sitting down all day these things slip your mind especially with the cog fog I have been living with... So even though I have done stuff like this many times before with much success, I think in this situation, i should have just gone in as soon as I could have after the first attempt... Now I'm in a crappy position because my mom is back in school full time and my dad is always working so I don't have many opportunities to get int the doctors. Ill have to schedule something for Tuesday or Thursday since that's when I have class and a vehicle. Please, if you find yourself in this position, don't try any of the above at home, just got to the doctor haha!

The Best things in the End are the Hardest in the Beginning

2011-08-21T13:44:00.000-07:00

This post really doesn't have to do with MS but is more of just me journaling, stating my state of mind I suppose. It probably won't make any sense and that's a good thing because I don't really want it to, I just want to speak into the world and know that the words are not bouncing off the wall 2 feet from my face but instead working their way into society, into life, to be free and observed by any whom should choose to take interest in them. Im just in one of those moods you know? I just need to write, write so I can feel like I got what ever it is I'm talking about off my chest for my own personal satisfaction.

My mind has traveled a great distance in the last few weeks from the everlasting stalemate it had been jammed in for the longest time. I could attribute this partially to a change in my medication but I would probably be lying if I said it was all thanks to my new happy pills. It's been a while sine I have tasted the sweet nectar of life I have grown to know as success, self gratification, but I finally got a sip of it the other week after photographing my first wedding. I was nervous at first and rather stressed as I seem to have some self confidence issues but once the bride was happy I finally allowed myself to believe what everyone had been telling me: that my photos were great.

Anyways that's besides the point, the point is, I have felt a lot better about myself lately than usual, well, at least in the last few weeks I have. I had a spike of positivity, a brake from depression, and it of course felt good. I felt like I could finally see the world as clear as I should be able to see it regarding my sense of judgement. I couldn’t and didn't trust myself before to be thinking rationally in any aspect of my life making it difficult to have any confidence in the decisions I was trying to make. Now that high is starting to wear off and I am trying to do what I can to not loose it, to set up some new boundaries in my life, some new guidelines while Im still thinking somewhat rationally so that I can work my way to being a better, happier, more successful person.

But all true dilemmas in life are nothing short of a paradox waiting to collapse our fragile universe before our very eyes and I am no exception to that cruel little rule. In order to feel successful one must be successful and in order to be successful one must feel successful for a depressive, self pitied, looser will be just that... A depressive, self pitied looser who never accomplishes anything do to his or her self fulfilling sense of failure. So in order to actually accomplish anything one must break the cycle, knowing what to do is not the problem it's knowing how to do it.

We often seek advice or direction from someone else in life but most of the time the reality is, we already know the answers to our questions and we have already decided upon which endeavors in life to pursue. We really just don't know how to travel the path to reach that end point, that goal, or maybe we do know how but don't want to accept the answer and are hoping to find something more appealing in the words of a friend or who ever it is we sought advice from. I think that's a major part of becoming self-aware in life: learning that it's not always about making a decision but understanding why we will make that decision.

So I sat down and started creating a list of goals and things I wanted to do in my life that I thought would bring me a feeling of self accomplishment and success. With this list I will create some kind of map that I can follow over time for “a goal without a plan is just a dream”.

Now I should mention that I have been living with many insecurities about myself for some time now that have greatly effected my ability to maintain a relationship. I thought for the longest time that I was insecure about something in my partner when now I am realizing that I have always been insecure about something in me... It's a shame that I am just now barely seeing this but what can I say, I am 21 years old... Becoming self aware is not an easy accomplishment nor is it one that I have succeeded in yet, but I'm trying to work on it. Anyways I do have a point here I just am having trouble reaching it...

When confronted with these insecurities I always thought I knew the answer to solving my dilemma but I am starting to understand what I mentioned earlier: I was simply looking for the easiest path to what I wanted and taking the path of least resistance is not always a strong foundation for success, it's more of a “sweep the problem under the rug” kind of solution, a Band Aid which is why my idea for solving my insecurity issue would have never worked...

So now once again I am trying to make a personal choice in life, I'm trying not to rush it, I'm trying to be patient and go with the flow, but I'm trying to do whats right in a timely fashion and it's difficult. I want to face my insecurities and conquer them properly, I want to be the best person I can be which means taking a path that is more difficult but may ultimately lead to a much greater sense of personal satisfaction and self-growth. When I spoke to a friend about this today she gave me a little bit of advice that I feel I will grow to covet and pass along over time.

“The best things in the end are the hardest in the beginning”

I may not know exactly what I want in life but I still have a pretty good idea of it. I know what kind of person I am and what kind of person I need to be and if you believe in a higher power what kind of person I am meant to be. What ever destination I choose among my many options in life I know that my path will not be an easy, smooth, ride downhill and that's fine. I most certainly will not know exactly how to travel this path and will of course make many more mistakes and that too is fine. I will do what I have to do to build myself into the kind of person I want to be: physically, mentally, and emotionally. If I can accomplish a feeling of self accomplishment I feel that it will make the rest of my life run much easier and make things like a relationship and career much more obtainable and satisfying.

I don't know if I tied any of that together, I don't know if I ran all over the place with everything but like I said, it was more of a philosophical journaling experience for me but for those of you who actually decided to read it all the way through, hope you enjoyed. I could write on and on but I feel I have said all that I need to say.

Steroids Worked Fast! I Can See Again!

2011-08-19T11:03:00.000-07:00

Well that was in fact the fastest I have ever responded to a steroid treatment and it was only 3 days on the IV! Granted I did start taking 80mg of Prednisone a few days beforehand which probably helped too but even still, my symptoms cleared up in less than 2 weeks and noticeably! No more double vision for me! Things are still a little blurry but my glasses fix that no problem so glad for that, will be doing some portraits later on this evening for some friends, it will be nice to be able to take some pictures and work on them without being blind!

So not much else has been new, I have been really tired lately and oversleeping sure doesn't help with that... Even with 3 alarms I find myself crawling right back into bed and knocking back out... I really hate this yucky, groggy, feeling that I get all day from oversleeping, I need to start working out. Need to figure out what the heck I am going to do about my diet and than try to start putting some weight back on and building my strength and endurance back up. That should help with my energy levels... But I have lost almost 15 pounds in the last couple weeks... Not good... I hate being skinny!

I also need to figure out what I am going to do about my treatment options. I need to demand a new neurologist again and maybe even try to get a referral to Loma Linda or something like that once more but I need something new and I need to be under someone's care because right now I really am not... My PCP moved and my last Neuro is a quack and I refuse to see or even talk to him again. That reminds me, got to write that formal complaint haha... Anyways I am also wondering what to do about my LDN. I am fearful that maybe the high dosage I have been taking has been contributing to my last few relapses... Its so hard to tell... So I think Ill do a little more research and talking around on that one before I start it back up because with school starting in a week or two I can't afford to go out again, litteraly, I just don't have the money.

Speaking of money, I started the Social Security Disability process yesterday. They had some kind of form on their website to work with a third party law firm that only deals with Disability cases so I filled that out and they called me within half an hour. Damn! They definitely don't work FOR the government. Haha the guy was really cool and honest, he told me about how the government WANTS to find a way to deny you (duh) and that there are 5 separate departments working to make that happen and was also honest about how hard it is to get SSDI so I don't know if I have much faith in this working out but I have nothing to loose since they only charge you fees if you win a claim. Good for me I suppose in that they now have a vested interest in me getting disability now haha!

Anyways, we will see how that goes... I really don't want to be on disability but I don't feel like I have too many other options when I have been relapsing like once a month! I need to get this under control so I can work because I am so sick of being stuck at home accomplishing nothing with my life! One step at a time I suppose, just getting really impatient! It's been over 1 year and I don't feel like I am in much better of a place as I was to begin with... I want to feel successful, I want money, I want to be able to go do things, and all that fun stuff!

Steroids Helping Vision: Horrible Infusion Day

2011-08-15T20:11:00.000-07:00

Oh my, what a day... Going to keep this one short because I am EXHAUSTED! So let's start with the good news first. The Prednisone I have been taking seems to have been helping my eyes. Today I have got to the point where I only get double vision if I look to my right. Everywhere else doesn't really double but it's still very blurry and sometimes doubles for a second if I move my eyes or head to quickly. Did just figure out that wearing my glasses with both lens exposed (was taping one for a while) lets me see so much more clearer than I have been able to see so wish I figured that out earlier today. Didn't realize how much of my impairment was just fuzziness!

So yay for steroids but boo at the same time because I wanted to stay away from them but today I had my first of three infusions...Three 1,000mg doses of Solu-Medrol to top off my oral steroid intake should clear up my vision but I have to say... My vision doubles so bad when I look to my right that I worry it's not going to go away... Everywhere else in my vision has healed a great deal but when it comes to looking to my right NOTHING has changed.... Kind of worried... But at this point I can get around and I COULD take pictures if I needed to. I have a small job on Friday for some friends and at first I was worried I might not be able to do it but I know by Friday I'll be just fine to get back behind the camera. Even if the right side of my vision doesn't recover I should still be OK.Let's see what a good nights rest does while the steroids really soak in haha. Fingers crossed!

But oh yeah, back to my horrible infusion experience... So the new infusion center I go to is really nice, everything is new, clean, shiny, and every chair has it's own personal TV, love it! BUT.... But.... The one nurse I keep getting.... Man.... She is nice but.... I don't know if she should be doing IV's for people.... Every single time I get her she messes my IV up and has to stick me twice or dig the needle around under my skin trying to get the vein... No one has ever, EVER complained about my veins, just her, in fact, everyone always compliments my veins and "how nice they are" from a nurses perspective of course haha... So Today she sticks me in my right forearm, can't get the vein so she digs around a bit. Good thing I have a high pain tolerance because it feels just like it sounds... Like someone is scraping a needle around under your skin bumping into things they shouldn't be bumping into... Gives up on that one and grabs a new IV and this time goes for my inner elbow, now this vein is impossible to miss... It looks as thick as a pencil! I honestly do believe I could put my own IV in right there because it's just the perfect vein. So in goes the needle! Got it! That was easy!

Nope.

Started pumping in the steroids and about 5 minutes later my arm was on fire, I mean horrible, horrible, burning all up my arm. I get the nurse's attention and she check it out. "Uh-Oh, it's infiltrating". Great so the IV was not actually in the giant, thick, bulging, vein on my arm. Nope, that's 7cc's of Solu-medrol just subcutaneously floating around my arm, awesome! So finally she calls over who I shall call "The Elder Nurse". Now she's not old or anything but she always comes and fixes the mistakes in one try and in half the time. She breezes through it so I call her the Elder Nurse as she seems to be the best at the job haha. Now part of me feels bad because I get the feeling that all the other nurses knows that my nurse isn't the best at what she does but than the part of me in pain remind myself that I am in fact ion pain because of her... So mixed feelings on that one.

Anyways, point of the story is, I got stuck 3 times today, had a needle dig around under my skin a bit, and experienced something that felt close to dipping my arm in gasoline and lighting it on fire for a few minutes. I only have three days of IV treatments this week! It was supposed to be an easy, kickback, quick, week but nope, today made up for the two days I am skipping and than some.

Haha thanks for reading...

OH YEAH! I ALMOST FORGOT! I was denied Disability today...
Yay... Matt = Screwed.

Double Vision and Vertigo: 6th Nerve Palsy?

2011-08-13T20:38:00.000-07:00

FYI: Expect lots of spelling and grammar errors in this post, I can't see what I'm writing!

Just can't catch a brake can I? Just got over a pretty bad exacerbation and already something new is trying to bring me down! This one was kind of my fault I am assuming though... You see, I had a last minute wedding job present itself last Sunday and despite the heat I just HAD to take this opportunity because it could have potentially lead to many more well paying jobs! This could be the brake I needed! Did OK all day at the wedding, felt unusually fine I might say...

The next day is when I started noticing something was off. My vision was a little tweaked, it was very settle though, almost felt like vertigo so I assumed that's all it was. By the end of the day my vision was getting much more blurry but that always happens when I'm in the heat only this time there was a delayed effect for some reason... The next day I woke up and immediately knew this was something different... Something new... My vision was totally doubled and everything was spinning, I could barely stumble out of bed and stand it was so bad.

Of course Mr. Neurologist was not in the office for the week and I guess his colleagues down the hall are not allowed to see other patients without a referral so the appointment center told me to go to urgent care. Surprise! You've been dropped from your insurance! Well this was not a complete surprise as we had received a letter in the mail and already contacted AT&T who said it was a mistake and that I am still covered but apparently Kaiser didn't get the memo... But that is an entirely different situation that we will skip for now...So still they took me in after filling out some paperwork saying that we would pay for all the expense should I not actually end up being covered.

At this point a few nurses did some basic vision tests... I mean basic. Stand at the tape, cover one eye, and read the top line. With my left eye I could see the top line and that's it as my vision was spinning to much and was far too blurry to read anything smaller. Right eye I couldn't read anything. Both eyes open I couldn't even tell where the stupid box on the wall was. Everything was so doubled that I saw two boxes on the wall touching corner to corner. Pointless test because the numbers were inaccurate of my issue. What ever.

They finally get me in with the doctor who just kept telling me he didn't deal with MS patients so he didn't really know what to tell me... Umm.... Really? You can't ask a colleague for some advice or something? Kaiser is all about their awesome technology and they don't even know how to use a phone? Don't have the technology or money to keep their doctors on some kind of special, online network that would allow doctors to instantaneously share information and send messages to each other bettering the abiliy to properly treat a patient? I know that sounds kind of far out but they should seriously invent something like that someday, bet it would change the world.

Be right back, have to check something on Facebook relaly quick...

OK so where was I? Oh yeah, ranting! So Just going to tell me I'm out of luck till I can see a neurologist? No advice what so ever? Nothing?? What a shock... Thank you doctor for your minimal contribution to my day.

Now mind, I came in to Kaiser that day because I myself believed I already had a diagnosis and solution but thought I should get a “professional” opinion before acting. I believe I am experiencing what's called 6th Nerve Palsy which is where the nerve that controls the muscle that keeps both eyes properly aligned (laterally) is damaged. The muscle grows weak and allows one eye to drift slightly to the left or right sometimes enough that it is even visibly noticeable but not always. This slight misalignment causes the double vision so if you cover one eye it goes away which is the case for me as of now. If it was a sever case of optic neuritis it would more than likely be consistent wether one eye is closed or not which is not the case. As always I am not a doctor so I can not confirm that information for sur emuch like... My doctor...

Anyways, he ended up asking me “Well what do YOU think it is?” and “What do YOU usually do during a flare?” before telling me “OK, well, you should do that then.” Awesome, hope I don't kill myself! Should have told him “Well since this is let the patient diagnosis and treat himself day I usually just shoot up a bunch of heroin! Heroin makes me feel great! What do you think of that doc?”

God seriously? So I wasted all that time to go back home and do what I was already planning on doing in the first place based on on my ZERO years of medical schooling experiance. My pre-Kaiser plan was to take about 80mg of Prednisone for about a week and wear an eye patch in the meantime to help with the double vision. His advice? 60Mg of Prednisone for 5 days and that's it. I don't think he even knew what 6th Nerve Palsy even was... So I have been taking 80mg of Prednisone since anything less is just like candy to me at this point and wearing this lame eye patch sometimes switching off to my glasses with some frosted tape over one lens so that I can eliminate the double vision while still letting my eye get some light so it doesn’t totally just shut down or something stupid. I got my next IV steroid treatment set up for Monday, Tuesday, and Wednesday, so other than that there is nothing I can do but wait. If the problem persists I can try to get some prism lens for my glasses but oh yeah, AT&T dropped my dental and vision coverage! So fingers crossed on the good ol' steroids...

After I get through this mess it's going to be time to start looking into a drastically new treatment. I have little faith in the disease modifying medications but I still have to try them before I can shun them off because at this point I'm going to have to try everything I can... I can't live a life where every month I am out for 2 weeks. How will I work? How will I go to school? Something has to change and I'm not sure what yet...

By the way, VERY hard to sort through hundreds of wedding pictures and edit the keepers when you are pretty much blind just in case you were wondering haha! So I want to thank my good friend Nicola who is a photographer over in Ireland with MS who helped me out a lot with this wedding situation. THANKS!

Happy Belated Birthday Multiple Sclerosis

2011-08-06T15:44:00.000-07:00

I wanted to post this yesterday but I was not feeling so well and slept most the day away. Exactly one year ago YESTERDAY, I started experiencing my first MS symptoms, a numbness in my right foot that rapidly spread up the right side of my body as a slight paralyses made its way up my left side. Over the next couple weeks my symptoms exploded into a variety of everything from blindness to loss of taste, even hiccups for days on end! I was in a wheel chair and could barely stay awake do to my sever fatigue. Of course this is a very general description of what I went through but you can read the full story in detail by clicking HERE.

I dreamt of this day for a long time. I imagined myself being in great shape standing on top of the world having conquered MS but unfortunately that is not the case. My hands are numb, my balance sucks, I'm still haunted by fatigue, my vision is still fuzzy, I still experience itching attacks, I feel week, I have lost lots of weight, I'm just not in the best of shape PERIOD. Of course, most of you now that I even just got over an exacerbation... That's 2 in one year. Not what I was hoping for. How is it that after all the pills and needles my doctors gave me to put into my body I am in hardly any better position than I was before? I saved every single pill bottle that was prescribed to me over the course of this year. Look at them all! All that medication was ingested into my body in just one year. That doesn’t include all the supplements or the medication that I have still not finished off. Insane...

"Most people in this country expect to be cured by a pill and have a cure that is almost instantaneous. With the low fat diet, the person actually has to work and has to cure themselves." - Dr. Swank

Now I am not submitting an opinion about diet with this quote, I am submitting to you the fact that I really don't think the answer to curing one's health is in a pill, I think it's up to US to cure ourselves or to at least increase the quality of our lives. After my first exacerbation I started pushing myself to go on hikes and be social, be active, travel, and I felt GREAT! In the last few months (or longer, I'm not sure) I have been anti-social, been locked up in the house, I have not been moving, and I feel like CRAP! Now is that a result of taking different medications? Only difference there is that now I'm taking more! Diet? I was eating anything and everything back then! Now I am a little more cautious about what I eat and still I feel worse. So I think a lot of it has to do with attitude. Back than my attitude was great, now it's terrible... I have had a very negative outlook on life... I have been thinking about that concept a lot lately and I really do believe that once I start school and start being active again that I'll start feeling better. I'm not saying that it takes being social and active to feel better I am saying that if you are happy and positive that it will open the door to letting you better your health where if your negative and depressed it firmly keeps that door shut. Maybe I'm crazy but in about two months we will find out!

(POST MS DIAGNOSIS: Balancing on 2 wheels!)

Just like the possibility that MS is caused by multiple factors I believe that the treatment of MS is multifactorial as well. I am hoping that in a few months my LDN will kick in along with my anti-depressants, my diet will be better, my mood will be more positive, I'll physically be more active, I'll have new friends, I will have found things to do that I enjoy doing with other people, and most importantly, I will have a feeling of self accomplishment. I imagine that fighting Multiple Sclerosis will be much easier with all these changed factors so I really can't wait.

Oh yeah, one more thing, I don't know if I have any faith in Copaxone or any other disease modifying medications for MS anymore but I'll probably keep taking the Copaxone alongside my LDN but I do know one thing is for sure, I want to cut the prescription medications way down for this new year. I'm 21 years old and in one year I have gone through more pill bottles than most people my age go through in a decade, that' can't be healthy... Well, time to start the new year by doing a load of laundry so thanks for reading!

(POST MS DIAGNOSIS: One of the largest free standing rocks in either California, or the US, or something crazy like that. Some guy actually built a house under it. I need to refresh my history because I can't remember any of the numbers but it was a fun trip.)

(POST MS DIAGNOSIS: Climb out onto a log, you can't see it, but I was about 15 feet above a waterfall that dropped another 10 feet or so. Couldn't do that now!)

(POST MS DIAGNOSIS: Just enjoying my regained strength.)

Fine Motor Skills and Antidepressants

2011-08-03T14:47:00.000-07:00

Well first things first. Above is a video I posted demonstrating the progress of my hands from my last exacerbation. I had mentioned that they were really stiff and numb as if I had held them in a tub of ice water for half an hour but now they are clearly doing much better. In this case on the piano, it's still really hard for me to not hit multiple notes at once or to hit the RIGHT notes at all. Timing is tricky and I can't play as fast or smooth as I ounce did but I sure could fool you into thinking I could play a little haha. Same applies to typing: I make lots of mistakes by hitting two keys at ounce or the wrong one all together but nonetheless, much better.

Secondly, I decided to start taking the new antidepressant that was given to me again: Citalopram. So hopefully in the next few weeks it will start kicking in along with my LDN. Around that time I should be starting school (at the end of this month) so I'm hoping by next month my life will start turning around. Got all my medication organized, threw away the old stuff, been consistent with my shots, getting good sleep, keeping my stress levels relatively low, and will soon work exercise into the picture.

I also went out and took some pictures for the first time in a while, I learned a new technique that I practiced yesterday and was please with the results. Check out the slideshow below. So doing that made me feel pretty good last night! So just got to keep up the good vibe! Take care everyone!

Still Slacking on the Blog but Trying to Keep it Positive!

2011-08-02T14:40:00.000-07:00

I know, I know, I have STILL been slacking on my blog! What's wrong with me?!?!? Well I'll tell you. Depression is a horrible, horrible thing isn't it? You can't think straight, you become irrational, the stupidest things make you want to brake down and cry yourself into a state of deadly dehydration, it makes you want to sleep all day, you can't function or work as well as you should, you loose sense of your priorities, and the world looses all of it's color. Although that last one could be a vision issue, might want to check that out.

Anyways yes, I have clearly been morbidly depressed for the last few weeks. I realize that this could be do to the fact that I have not been on any antidepressants for some time, something I have been on for years to help keep me stable... I'm not sure yet if I should start back up on my old stuff or start taking the new stuff again even though I originally thought that it could have been the source of my itching. I now know that it's not because I have not taken it for weeks but I am still having these itching attacks but because they started around the time I started taking that new medication it play's mind tricks on me... But the itching is definitely a symptom because it gets worse or pops up when it's hot or I'm stressed... Just spent about an hour in the kitchen around the hot stove and now I'm starting to itch... Horrible, horrible, horrible symptom....

Aside from my depression I am physically doing better. My hands are the only thing that really stand out to me as still not fully recovering to my "baseline" but they are well enough that I can type again so that makes life a little less stressful. Of course I still have many other symptoms I am dealing with but like I said... I am simply getting back to my baseline which was not 100% to begin with. Since I felt my exacerbation was definitely over, I decided last night to start taking my LDN again. For anyone wondering I am taking 4.5mg. After I finish writing this quick blog I am going to decide what to do about my antidepressants, organize aaaaallllllllll my pills for the week, and get back on my "healthy" routine. I have already been on top of my Copaxone since this last exacerbation so now I just got to add the pills back into the picture. On top of all that I am looking into some dietary changes again, specifically the McDougall Plan. I recommend you check out his website and watch his video on MS by clicking HERE. It's about an hour long and starts off kind of rough but gets really interesting pretty quick! He is basically continuing Dr. Swank's work in the world of dieting and disease treatment (in this case Multiple Sclerosis).

I have an appointment with a therapist soon and will also be getting my spinal MRI finally! School starts back up at the end of this month so I really am hoping that things will start turning around in my personal life so I can better deal with my health. This Friday marks my "One Year Anniversary" with MS and I am trying by best not to slip back into the pit of depression as I feel I am starting to reach the edge of getting out of this hole but it's been one year.... ONE WHOLE YEAR and I feel as though I have not moved forward in the least bit... Still no car, still no job, nothing and that depresses me... So I'm trying not to think about it, trying not to think about it, purple buckets, purple buckets, purple buckets!

Haha well, that's it for now. I'm going to try to share a little bit more about what I have been studying in the world of MS while I try to turn my life around this month so I will try my best to get back on top of my blog.

If you haven’t already, please follow my blog by clicking "JOIN THIS SITE" on the right side column, it makes me REALLY happy haha and it takes like 10 seconds especially if you already have a yahoo, google, or Twitter account. Thanks!!!!!!!!!!!

ALSO! Let me know what you think about the new look... I was bored and decided to switch it up a bit but I don't know if I really like it, kind of looks less professional but maybe it's just me so be HONEST! Haha, THANKS!!

Exacerbation 2.0 - MS Hug, Hiccups, and More

2011-07-27T14:24:00.000-07:00

Wow, this might have been the longest break I have taken from blogging so far! Where have I been? Sick! I now know the difference first hand between simple flareups or pseudo-exacerbations and acute exacerbations or as I call it: catastrophic failure! Okay that might be a little dramatic but that sure is how it felt! This time around was different than my initial exacerbation that brought about my diagnosis but it was still pretty debilitating which is why I disappeared from my blog and Facebook but now I'm feeling a little bit better and so it's time to catch up!

So here's the problem, about a year ago when I was stuck in bed experiencing all these new wacky symptoms I had a digital voice recorder at hand to keep track of my progress as it happened. Doing this allowed me to keep track of the exact date and time I experienced something simply by pushing a button and mumbling into the microphone. This time around I did not do that because at first I did not think I was experiencing a quote unquote exacerbation but then overnight it became clear that I was... But I felt so sick that I never thought to bust out the tape recorder again. I obviously don't have the greatest memory so I'm afraid most the juicy details have been lost but here is basically what happened.

I woke up one morning with an all too familiar sensation along the right side my body: Pins and needles and/or numbness... No easing up on me this time... Just attacked me full-blown out of nowhere from my foot, along my leg, up my side, and into my shoulder. It was also in both hands and creeping up my right forearm.

“No, no, no! Why is this happening??? Okay hold on, maybe it's nothing, maybe I just got a little stressed out and a little too hot.”

The next day: The numbness was not gone, in fact, it was spreading across to my left side a bit, mostly in my abdominal area. I was also noticing a growing weakness in my legs... The intensity of my numbness was growing in my hands... Still I tried to play it cool and even knocked out a photo job I had about half an hour away although, by time I got there I felt completely drained so I popped my head in the bar, snapped a few pictures of people watching the Women's World Cup, and I was gone. After submitting my photos I pretty much just laid around for the rest of the day trying to rest.

Day three: This is where I knew for a fact that I was having an exacerbation... The denial card was no longer playable... My legs were getting so weak that I could hardly stand and the numbness was not getting any better. My vision was starting to go again, the fatigue was horrific, I was even battling my crazy hiccups again, and I was experiencing something new:

The MS hug.

It started in my chest making it rather uncomfortable to breathe. I had heard about this symptom before but never experienced it and as the so-called hug made its way into my abdominal muscles I began to understand why many people found the given name of this symptom to be rather cruel. I don't know who coined the phrase but they either never experienced it them self or never experienced an actual hug from someone that was not secretly trying to kill them. This has been one of the worst symptoms I have ever experienced!

My stomach was so tight that I could not eat! Just one cracker made me want to throw up! I was constantly nauseous and it hurt to bend or twist into any position besides the upright sitting position. Sleeping was even difficult as I could not lay on my stomach for obvious reasons, I could not lay on my side as it hurt equally, and I could not lay flat on my back because my stomach could not stretch out that flat so I had to try to lay on my back will with my legs propped up as high as I could keep them so that I was as close to a sitting position as I could be only on my back. It was very uncomfortable!

At this point of course I was not “sleeping” in my own bed because a while ago I had bought a loft bed to try to give myself a little bit more room in the 10x10 bedroom I shared with my brother and I was now too weak to climb into it. So at first I slept on the couch and then when we realized this was going to last a while we brought in my full size mattress from my previous bed which is way more comfortable than anything else I have to sleep on. So that helped quite a bit but sleeping was still a task in it's own even with all my medication.

So now that I knew that I was having an exacerbation I was calling everyone I could to get some kind of help or advice. My LDN doctor told me to stop taking my LDN until my exacerbation had come to an end and my neurologist wanted me to come in to make sure this MS hug was not some kind of cardiovascular failure...

“Ummm... Yeeeeah... How about you just set up my IV steroid treatment like you were supposed to do several weeks ago instead of trying to steal another co-pay from me?”

Well I got in contact with the infusion center and set everything up on my own. We decided it might be a good idea to simply stop by my neurologist's office just to see what he had to say. At this point I was determined to get my plasmapheresis treatment. Pain killers killers did nothing nor did the muscle relaxers I got from a friend of mine. I wanted relief! I had done much research on the procedure and based on my experience with steroids in the past it seemed like it would be of great help to me in particular. Now previously this Neurologist had told me that plasmapheresis would not affect the overall progression of the disease and I was already well aware of that but at the time I did not see it necessary to argue the point because I did not entirely need it at the time. Now that I was relapsing I was ready to fight for it because I did not want things to get worse than they already were.

I had my list of what I wanted and a copy of a report from the American Academy of Neurology regarding the use of plasmapheresis.

“Plasmapheresis is established as effective and should be offered in severe acute inflammatory demyelinating polyneuropathy (AIDP)/Guillain-Barré syndrome (GBS) and in the short-term management of chronic inflammatory demyelinating polyneuropathy (Class I studies, Level A).”

http://www.neurology.org/content/76/3/294.abstract

Long story short he told me that plasmapheresis was too dangerous to use in a situation like mine especially because he thought it was completely useless. He told me he didn't care that I had “some papers from the Internet” because he had experience and plasmapheresis would be of no use to me. I told him that I did not pull this information off of Wikipedia, this was a report from a relatively reliable source of information (the American Academy of Neurology). He then flat-out challenged me to show him a patient whose neurologist actually used plasmapheresis along with a steroid treatment as a casual means of treatment for an exacerbation. I told him I would and that I would also send member services a formal complaint. I can't remember exactly what he said next but he had also told me I was not experiencing an exacerbation so I had completely had it with this joke and his condescending attitude. I stood up, told him he was wasting my time, and I left the room.

Luckily my mom stayed behind as I made my way up to the infusion center because it seems that after I left he had a slight change of attitude. All of a sudden the spinal MRI that I wanted that until that moment was previously completely unnecessary to him was now a good idea. The extra two days of IV steroids was also not such a bad idea anymore. Disability? Well that was out of the question! Not anymore! Three months! Why so generous Dr.? The only thing he didn't completely cave in on was the plasmapheresis, for that he gave me a referral to a doctor in LA for a second opinion. Pft! I'm not going to waste my time. A Kaiser doctor is a Kaiser doctor and something's telling me the reason they are so reluctant to set me up with plasmapheresis is that plasmapheresis cost about $2000 where Solu-Medrol cost about $50 and someone might get in troooouble for using something so anti-profitable!

I mean, you can't tell me they are concerned about my health and possible side effects when they are so willing to throw around all these prescription medications and addictive narcotics at me. Let's look at the last medication this very neurologists prescribed me versus plasmapheresis.

Gabapentin side effects

Get emergency medical help if you have any of these signs of an allergic reaction to gabapentin: hives; fever; swollen glands; painful sores in or around your eyes or mouth; difficulty breathing; swelling of your face, lips, tongue, or throat.

Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, anxiety, depression, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.

Call your doctor at once if you have a serious side effect such as:

increased seizures;
fever, chills, body aches, flu symptoms;
swelling of your ankles or feet;
confusion;
rapid back and forth movement of your eyes;
easy bruising.

Some side effects are more likely in children taking gabapentin. Contact your doctor if the child taking this medication has any of the following side effects:

changes in behavior;
memory problems;
trouble concentrating; or
acting restless, hostile, or aggressive.

Less serious gabapentin side effects may include:

dizziness, drowsiness, weakness, tired feeling;
nausea, diarrhea, constipation;
blurred vision;
headache;
breast swelling;
dry mouth; or
loss of balance or coordination.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Plasmapheresis

The most common problem is a drop in blood pressure, which can be experienced as faintness, dizziness, blurred vision, coldness, sweating or abdominal cramps. A drop in blood pressure is remedied by lowering the patient's head, raising the legs and giving intravenous fluid.

Bleeding can occasionally occur because of the medications used to keep the blood from clotting during the procedure. Some of these medications can cause other adverse reactions, which begin with tingling around the mouth or in the limbs, muscle cramps or a metallic taste in the mouth. If allowed to progress, these reactions can lead to an irregular heartbeat or seizures.

An allergic reaction to the solutions used to replace the plasma or to the sterilizing agents used for the tubing can be a true emergency. This type of reaction usually begins with itching, wheezing or a rash. The plasma exchange must be stopped and the person treated with intravenous medications.

Excessive suppression of the immune system can temporarily occur with plasmapheresis, since the procedure isn't selective about which antibodies it removes. In time, the body can replenish its supply of needed antibodies, but some physicians give these intravenously after each plasmapheresis treatment. Outpatients may have to take special precautions against infection.

Now yes, a lot of people are on Gabapentin and have no issues but that is my point. Just because it's possible does not mean it's likely and the very few side effects of the plasmapheresis procedure are all pretty much, in my opinion, are related to human error with the exception of a few things but anything that works is going to have its risks and side effects. The only difference between this procedure and most prescription medications is that you can't tell if the medication is bad for you until you have a bad reaction to it and you can't tell if plasmapheresis is bad for you unless a doctor messes up. So unless you have a really bad doctor who doesn't know what they're doing you probably have more of a chance of reacting poorly to a prescription medication then you do having a bad experience with this simple procedure. But who knows, I could be completely wrong, I'm basing all of this off of information from the Internet and other people's experience.

So before I move on from this rant I just want to say, if you have had any experience with plasmapheresis please let me know and if your doctor has in fact used it along with steroids for the treatment of an exacerbation I would love to get an e-mail from you with your doctor's info so that I can send it to my neurologist and let him know that yes, doctors do in fact use this procedure for treating an acute exacerbation.

mattalleng@yahoo.com

Moving on: So I finished my steroids, had a bit of an episode of low body temperature (a steady 95 degrees for about 3 days), and have been battling nausea from the MS hug on and off. I'm feeling a little bit better today but still don't have all my energy back or full control of my hands. The pins and needles are not as bad nor is the grip of the MS hug but my balance is still pretty screwed up and my strength is still pretty low. So I have got a little bit better but still nowhere near my so called 100%.

Oh yeah, one more thing, my family decided to try to compromise a little bit to help with my health. If you ask me though it's not entirely a small compromise... My brother agreed to move out of the bedroom so that I can have a room to myself to allow me to relax and sleep when I need it for as long as I need it. To allow me to have some space to myself to hopefully reduce my stress and aggravation. He's sleeping on the couch bed we have and set up a space for himself in the garage like I have previously done for so many years. I have to admit I still have not gotten used to having my own room, it feels kind of wrong, I feel somewhat selfish... I'm going to do my best to make good use of this time and space though especially for school.

Well that's the basics of what has been going on. I know I kind of rushed through it all but I couldn't possibly include all the details of my absence, not even all the ones that I remember. I'll try to get back on track with the blogging and let everyone know how I'm doing. If anyone has any questions just post them below and I'll definitely answer them. Thanks for reading!

If You Have Nothing Nice to Say, Don't Say Anything At All

2011-07-15T14:11:00.000-07:00

Hey everyone, just wanted to say sorry for my lack of blogging. I'm taking the advice of the above words. Right now I simply have nothing positive to say so I need to take some more time off while I figure my life out. Once my mood improves I'll continue to blog but right now I just can't.

-Matt Allen G

Why is Matt So Depressed?

2011-07-08T12:09:00.001-07:00

I was thinking this morning amongst the depths of my depression, I have never really explained why in full I am actually depressed so often. I always mention in my Facebook MS group that "I'm depressed today" and I'll maybe offer a minimum explanation as to why but never the full story. So I wanted to take the time to try to explain why I am so depressed and why it's such a constant issue for me. I hope this will help people better understand where I'm coming from and why I have such a hard time getting through the days of life with and without the Multiple Sclerosis factor.

Since my early teens I have always had major issues with depression... It seems as though I have never had a proper balance of dopamine in my brain as motivation has also always been a major factor contributing to my depression. I have always found it hard to commit to my endeavors leading to a decreased amount of personal success in my life. I eventually hit a very dark point in my life and my depression was getting extremely out of hand so I finally decided to seek the help of medication. At first I had really good luck with my antidepressants plus I felt rather successful in life at the time. I had a good job and was making decent money for someone my age, I had my own truck, I paid my own bills, I had lots of friends, I was constantly going out, life was just great. Pretty soon I started dating a coworker whom I quickly fell deeply in love with. Our relationship was off to a great start.

Life was Good.

Then Life was not so good.

Some might say that all good things must come to an end but that could be open to interpretation and is without a doubt a victim of opinion. Regardless, it was definitely the case for me. I foolishly quit my job to pursue a business opportunity because the company I was working for had been purchased by a larger company and they treated everyone horribly. On a regular basis employees were going home in tears, fights broke out, hours were cut, it was horrible. Many of us left because we couldn't handle the emotional stress any longer. Soon after my business failed, my truck kept braking down, I had to sell it, my relationship was falling apart, my group of friends all went their seperate ways, and finally, life was not good.

I bought a new car and I thought things were turning around especially because it looked like my relationship was improving. Come to find out the car was a lemon and now I was in court trying to get my money back. The defendant never showed up once, I won the case but learned very quickly that it meant nothing because so long as the defendant avoided court I would never see a dime. What ever, it would all work out in the end right?

Fast-forward about a month. I'm standing in a hotel shower getting ready for a day at Disneyland and my foot is numb. It wasn't long after my diagnosis that my relationship collapsed. MS was a struggle but I overcame my first exacerbation amazingly in my opinion at least. I was building a stronger relationship with my high-school buddy and his girlfriend. Watch the videos on youtube, we embarked on many little adventures and I felt like I was on top of the world, nothing could stop me, I had beat MS. Eventually I was back in my relationship trying to work things out. Things were OK at first and I felt content with my life. I had lost my friendship with my buddy and his girlfriend for various reasons but at least I had my girlfriend... Well... Things of course got complicated and our relationship finally came to an end...

Now I have no job, no car, my health has been declining, I have no friends, no people to interact with, no one to call my companion, no one to hold me when I'm down, no one... On top of that I'm stuck in my cramped up, depressing, little, room that I share with my brother which is just an entirely different source of depression in it's own. No income but plenty of bills... No more feeling of accomplishment, nothing... I have lost everything or so it feels. Luckily I still have my best friend Rodney but we live 40 minutes apart so we are mostly limited to talking on the phone.

So you see, MS contributes to my depression the least... LIFE is what contributes to my depression above all else. I appreciate all my friend online in the small MS community I have helped* create, I would be in a much darker place without them all, and I appreciate the few friends I do have even though we don't get to hang out much, but still I feel alone... My loneliness is crippling, I just want a companion to help me be strong again, to push me to succeed, even if it's just a really good friend.

This is why I am depressed.

I CAN HAS LOW DOSE NALTREXONE!

2011-07-07T14:33:00.000-07:00

I probably don't have to say it but I'll say it anyways: my appointment went really well today! I don't even know where to start! Doctor was great, office was great, everything was great! And as the title says,

"I CAN HAS LDN!"

Woot Woot! That's right, I now have a prescription for Low Dose Naltrexone! Best of all I finally found a doctor who's interest is in the patient! Finally found someone who is not simply following the general, textbook, procedure of treating a disease! Today was a good day and hopefully will be a day to remember in my battle against Multiple Sclerosis!

So what I want to talk about is the extreme difference in treatment I received from this out of network doctor compared to my treatment from Kaiser doctor's. From the moment I entered the office and approached the front desk I felt that everything was different. The receptionist remembered my name from the other day and she even had a smile on her face. I felt like I was being treated like a person, an individual, rather then just the "next member in line". There was no hopeless wait in some depressing, dimly lit, waiting room. Service was quick and courteous!

The Dr. saw me almost immediately and was also very polite. I felt like he was definitely trying to get to know Matt the 21 year old male not Patient X with MS presenting Symptoms XYZ. He was also very observant much like "Dr, House"! I was at a loss for words when he said to me:

"You play guitar don't you?"

"Um... Yes? How did you know?"

"Well when you mentioned you had a loss of fine motor control in your left hand you wiggled your fingers like this" he said as he wiggled his fingers in the upright position, "when most patients wiggle their fingers like this," he finished as he wiggled his fingers in the downright position.

"Well," I chuckled "I haven't played in a while but yes, yes I did play."

He also pointed out that I road motorcycles by my choice of clothing and that I had a dog thanks to the few hairs that stuck to my black T-shirt. This is my kind of doctor! But then it got better! This may not seem like much to some people but he started a new conversation with

"So what do you know about LDN?"

What??? I thought doctors wanted to feel like any knowledge a patient has obtained was from them and them alone! I cautiously explained what I knew about LDN expecting some kind of trap but he was actually satisfied... Didn't argue any facts, didn't inform me of anything I left out, nope, just told me I knew what I was talking about and that I had realistic expectations before he proceeded to ask if I had any questions. No Kaiser doctor that I have ever come across has acted in such a way! There was no ego, none! I was seriously, seriously, at a loss for words! I had never had this kind of interaction with a doctor before!

What's that? You need to see me in 6 months to see how I'm doing? Sign me up! I pay more money for all my useless co-pays at Kaiser for unnecessary appointments and useless medication then I paid for this one visit out of pocket! What's that? I can CALL YOU if I have any questions or concerns?? Your kidding right?? No? Wow! Well Merry Christmas to you too!

I don't know what else to say, I'm more then happy with this turn of events! I really hope that this medication helps me because this doctor is awesome! I'll start taking my LDN on Monday as the pharmacy didn't have the 3 months supply ready today so I'll be picking it up on Monday.

YAY! I CAN HAS LDN!!!!

Looks Like I'm Allergic to my new Anti-Depressant

2011-07-05T18:37:00.000-07:00

For the last few days I have been dealing with really itchy palms, it's horrible... Obviously itching them doesn't help but Benadryl does, one problem, it knocks me out! But what other choice do I have when I am taring my skin apart itching my hands? In fact, last night I even felt it on the top of my feet! So I did some research and pinned it on my citalopram which can cause itching. Emailed my doctor who actually replied! He told me to stop taking it, wait a week, and email him back... A week? Why do doctors think I have all the time in the world?? My depression was already debilitating and it's only getting worse especially when dealing with something as stupid as sever itching! It's the little things that tend to push people over the edge... I NEED to be on something...

Right now I feel like a wreck, I feel miserable... I can't even pinpoint each symptom, each ache and pain, it feels like they are all just mixing together into one crappy feeling... On top of this I am extremely fatigued and trying to find a job while racing against the clock to pay the bills... I feel worse now then I did before but I can't get disability help because I LOOK better right now so I MUST be better. So between the stress of my health and the stress of getting a job to pay the bills, I am growing even more depressed... I just want to lay down and die right now because it's so hard!

I hate doing this alone... I know I complain about this a lot but the loneliness I feel everyday hurts so bad, literally, I can feel it in my chest... I want a companion so bad... Someone I can go out to eat with, go on walks with, drive around town with, someone to hug, to hold, to hold me... I'm so jealous of every young couple I see while I'm out and about... It's not fair... I just try not to think about it but sometimes it's hard when everywhere you go you have some kind of special memory. Every time I hear that one song or walk down that one isle at that one store... Everything reminds me of my past, part of me wants it back but... But the past is gone, the past can never be again, never.

Right now I'm thinking it would be good to volunteer at the community hospital to get me out of the house, involved with other people, and to feel like I am accomplishing something in my life. It's just hard to fight through the depression. I have always had depression and always had to struggle but this is definitely the worst it's been in a long time... I hate where I'm at in life, I hate it. I wish I could just wind the clock forward a bit to a different struggle of some sort.

-sigh-

Just got to keep on keepin' on.

Monkeys in Oregon With MS?

2011-07-03T20:10:00.000-07:00

Someone posted an interesting article in my Facebook MS Group today talking about monkeys and MS. Now I was of course naturally drawn to this article because guys just simply like monkeys, what can I say, they're awesome! But of course a monkey with MS is a whole separate story... I wouldn't go as far as to say it was shocking to hear of such a thing but maybe surprising would be the right word. Interesting at the least.

So there have been reports of monkeys in Oregon experiencing paralysis of the limbs since the mid 80's. At the time they had no idea what was going on so they put the poor little monkeys to sleep. There have been a total of 56 monkeys with this mysterious disease and over the course of each year there are usually about 4 monkeys out of 300 who develop the described symptoms. They now know that this disease is the "monkey equivalent" of Multiple Sclerosis, in fact, they have even shown signs of relapses and remissions! MRI scans show scattered lesions and most intriguing of all, they believe that their disease is triggered by a virus. Which virus you ask? Well samples taken from the spinal cords of several monkeys revealed traces of a Herpes related virus... Now they didn't mention which one in this article but I'm going to go ahead and guess Epstein Barr... Monkeys who showed no sign of the disease did not have this virus.

Now the reason I find this so intriguing is that there has always been a theory out there that MS is caused by a virus: the Epstein Barr Virus in particular, which is of course a member of the Herpes family. "But what about environmental factors, CCSVI, this, or that?" you may ask? Well this was the center of our conversation in my Facebook MS group and I think the conclusion was rather plausible... You see I have always believed that MS is genetic... It's almost certain that my Grandmother had MS. The Epstein Barr virus has always interested me as well because I had a really bad case of mono, my mom had mono, my aunt had it TWICE, and then she was later diagnosed with Lymphoma. Sure the CDC reported that 95% of adults between the ages of 35 and 40 have been infect by the Epstein Barr virus and obviously we don't all get MS but here is the thing. In theory, the virus is not the cause of Multiple Sclerosis , it is the trigger.

Everyone has caner cells in their body however it takes a trigger to set them loose. Is it really hard to believe that maybe some of us have a genetic defect or "MS gene" that like cancer needs an external trigger such as the Epstein Barr virus to activate the disease? Well what about the narrowing of veins in the neck as explained in the CCSVI theory? That could simply be another side effect of the disease, another symptom, inflammation! Treating CCSVI relieves your symptoms but is it truly treating the underlying cause? Well, we don't know which is why I am simply speculating. There are so many theories out there and so many supposed treatments or cures as some people would dare to say. There is no doubting that the various treatments have helped many people all over the world so either we all have different forms of MS caused by different things or they are all connected some how. Logically speaking I would guess that more then likely all these theories are related but no one has figured out how to connect them yet.

I think it's going to take one really open minded individual to figure this one out but hopefully this discovery will help find that answer as well. All I ask is that you all keep an open mind be a closed mind has already made it's decision...

CLICK HERE to visit the article I am referring to.

Progress Update: Retiring Progress Update

2011-07-03T16:12:00.000-07:00

First of all I just wanted to point out that I will be writing multiple postings today, I have a couple things I want to write about but I am trying to keep everything organized. So for this posting lets talk about the obvious: My progress! I'm sure that's exactly why you dedicated yourself to reading this posting in particular! Haha...

So I have not been taking my minocycline at all and what do you know, my nausea is finally gone! My joints are still kind of achy but my skin is no longer tender to the touch and my muscles don't feel as achy. I think my joints are still hurting a bit because I have been oversleeping and I tend to sleep on my sides weird plus I have not done any kind of exercising or stretching in a long, long, time. Although... I don't know how to explain the pain in my heels... Either way, I feel a lot better so that's good.

Current symptoms:

Poor Balance
Poor depth perception
Minor weakness in left side of body
Fatigue
Poor vision (on and off)
Inability to properly control left leg
Occasional tremors in left leg
Loss of fine motor control in left hand
Tingling in finger tips
Impaired cognitive abilities
Insomnia / Restless Leg Syndrome
Sensitivity to cold on right side of body
Joint Aches
Depression (more then usual)

Oh yeah! Almost forgot! For those of you who read the other day I had a problem injecting in my stomach with my autoject. After talking to some people it sounds like I might have injected into scar tissue or a dense spot. That day my medication had bubbled up and left a big red bump. That bump is still there! It itches and it's really firm as if there was something solid under my skin. It's kind of gross but mostly anoying because it itches! Not sure what the deal is there but I doubt it's anything serious...

OK, OK, now I'll address the elephant in the room... Haha well actually, it's not that big of a deal. I am simply retiring my posting title headings, mainly the "Progress Update" term, because to say progress update implies that I am making some kind of progress good or bad and since my actual progress is pretty much at a halt I feel like the term "Progress Update" looses it's meaning. I would rather use it for periods of true exacerbation when I know for a fact that I'm having an actual, full blown, relapse. Again, nothing exciting, Ill continue writing like I do but I will just be throwing regular blog titles up rather then labeling the titles themselves. Everything will still be organized under their proper pages and I may just "tag" each posting so that you can type in "progress update" in my search bar and skim through all my postings there. Ill be experimenting so just bare with me. If you have any suggestions just leave a comment!

Progress Update: Autoject Was Acting Weird Today

2011-06-30T15:40:00.000-07:00

This morning I had an odd experience with my autoject. Has this ever happened to you? My daily injection routine started out like any other day, heated the injection site for 5 minutes and sterilized with alcohol. Then I inserted my needle into the autoject, adjusted the depth, removed the cap, pressed the button, felt the slight prick of the needle and then.... And then not much happened... Usually at this point I can hear the click, click, click, of the autoject administering my medication but today it was more like "click.............click.............click". I am used to everything going as planned when it comes to my injections, I have never had an issue before, so when something was going different I didn't exactly realize something was going wrong, I just knew something was slightly different. I looked down at the Autojects window and still no red indicator... Was the spring broken?

It sounded like it was getting slower and slower so I decided to just pull the needle out. Oops. Guess the spring was not broken. The autoject squeezed the plunger down full force squirting medication everywhere... Although this was not funny at the time it's rather hilarious in retrospect haha... So not sure what happened but I didn't get my full dose today obviously and the injection site is now a nice little red bump which is unusual for me as well... Was this a mechanical issue or did I somehow inject into a really "dense" area of my stomach allowing no easy path for the medication to flow? I have no idea... Guess I will have to wait and see tomorrow!

On a side note I didn't take my minocycline last night or this morning and though I am not completely cured of my nausea it certainly feels much better today... I really don't want to take it tonight because I have just been miserable the last few days and of course don't want to do anything to prolong this feeling of nausea... But we will see... I just want to feel better so that I can start looking for a job as I am out of money and the bills are still coming... I feel really screwd at this point but that is another story. Since I'm not apparently going to get any better but I'm also not disabled I just got to suck it up and go with the flow... For now...

Progress Update: Wow, I think I got It

2011-06-29T17:26:00.000-07:00

This is going to be a rather short posting in comparison to yesterday (haha) but yeah, I think I figured out why I have been feeling nauseous and achy lately. I thought that I had checked all my medication for possible side effects similar to mine but it was brought to my attention by my mom that I had forgot one medication. Minocycline: the medication they prescribed me to help get my acne in control now that I am off the oral steroids. Made sense, it is the only new medication I started taking recently so I hit the internet in search of an answer which came after just one click to drugs.com.

"Diarrhea; dizziness; drowsiness; indigestion; lightheadedness; loss of appetite; nausea; sore mouth, throat, or tongue; vomiting."

Check, check, and check. I have been experiencing pretty much all of this except maybe one or two things. Then I looked on to the more serious side effects.

"Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); bloody stools; blurred vision; change in the amount of urine produced; fever, chills, or sore throat; hearing problems; joint pain; muscle pain or weakness; rectal or genital irritation; red, swollen, blistered, or peeling skin; ringing in the ears; seizures; severe or persistent headache; severe skin reaction to the sun; severe, watery diarrhea; stomach cramps or pain; swollen glands; symptoms of pancreatitis (eg, severe stomach or back pain with or without nausea or vomiting); trouble swallowing; unusual bruising or bleeding; unusual tiredness or weakness; vaginal irritation or discharge; white patches in the mouth; yellowing of the skin or eyes."

Wow. I think this is the culprit for pretty much everything I have been experiencing in the last two weeks or so. I think my doctor had even told me that some people's stomach's don't handle this well but I didn't make the connection until now. You would think that with all my presenting symptoms someone would have thought to check the medications I was on before adding narcotics and "neuropathic pain pills" to the mix. Guess not but for now I'm going to cut my intake in half. Go from 2 pills a day to just 1 a day and we will see how that effects me over the next 3 days ro so. If I see some improvement then maybe I'll cut this medication all together unless 1 pill sits well with me. We shall see! Just hope this is it!