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About Me

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My name is Matt and I am 22 years old living with Multiple Sclerosis in SoCal. Most people fins me via my blog at http://www.mattsms.com and I work to connect people with MS from all over the world of different ages, genders, and walks of life.

Tuesday, January 31, 2012

Symptom Log - Off the Prednisone, Up the Gabapentin

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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)
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Monday, January 30, 2012

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

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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!
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Friday, January 27, 2012

Progress - Still Learning My Ever Changing Limits...

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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".

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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!



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Thursday, January 26, 2012

MS Friends - Meet Kane!

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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!

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Wednesday, January 25, 2012

I Spoke At Loma Linda University Pt. 1

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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!

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Monday, January 23, 2012

Progress - Speaking at Loma Linda University Tomorrow!

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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!
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Sunday, January 22, 2012

Symptom Log - Bad Day Pt. 1

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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)
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    Friday, January 20, 2012

    How to Make and Use a Button Aid

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    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!

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    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.
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    Step 2
    Hook the button with the loop of your buttoning aid.
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    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!
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    Step 4
    Pop the button through the whole by pulling your 
    buttoning aid all the way through.
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    Step 5
    Some clothing is a little tighter then other but your button 
    should pop through the other end!
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    Step 6
    That's it! Enjoy your buttoned up shirt as much as you 
    can enjoy a buttoned up shirt!
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    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.
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    Step 1
    Begin unfolding your paperclip into a straight line.

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    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.
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    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!

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    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!

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    That's it! Your done!

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    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!




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    Thursday, January 19, 2012

    Progress - Thank You! On My Way To Success!

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    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! 
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    Wednesday, January 18, 2012

    Fight MS Memory Loss With Your Phone!

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    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!

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    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.

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    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.

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    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!”.

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    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!

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    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!

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    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:

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    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”.

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    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.

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    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!

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    Tuesday, January 17, 2012

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

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    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!
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    Symptom Log - Prednisone Taper

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    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)
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    Monday, January 16, 2012

    Progress - Roid Rage x 100! Loosing My Cool!

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    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!
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    Sunday, January 15, 2012

    What Will Living With Multiple Sclerosis Be Like?

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    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.



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    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!

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    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!

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    Progress - Steroids Make Matt Angry! Roid Rage!

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    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!

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

    How Do You Treat Multiple Sclerosis (MS)?

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    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!
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