Progress Update: Bad Idea - How Heat is BAD for MS

Note: Please excuse any spelling or grammar errors... 
My cognitive functions are not performing at 100% today...

So today I pushed the limits of my heat tolerance... My dad was doing some cleaning on the side of the house where I had left two large particleboard sheets that I bought as backdrops for my photography as they were meant to look like brick. They got left out in the rain which basically melted the particleboard which is pretty much just really thick cardboard. The boards became warped so I figured I would just toss them out... They were no longer any good.

So I began folding the boards in half over and over splitting them into smaller and smaller pieces. No big deal, nice and easy. Sure it was about 82 degrees out but it didn't feel that bad because we were in the shade and there was a nice little breeze. After I finished tossing everything in the trash can I stood there outside for a minute looking at all the cleaning we had done. Then I realized I felt kind of weird... Dizzy... Almost like I was blacking out... So I went inside to grab a glass of water and cool off.

At this point it seamed as though the closer I got to that ice, cold, glass of water, the dizzier I got. I drank some cold water, grabbed an ice pack, layed down on the floor, and through the ice pack on my chest. I felt like I was about to pass out. I almost felt high like I had just popped a bunch of Vicodin. AC on, fan on, and ice pack. Took a while but finally I felt like I wasn't going to pass out. All better now?

Nope.

Looks like I screwed myself over for at least the day if not longer... My balance and coordination are horrible. My blind spot is really bad... Can barely see half my keyboard... Left side of my body is really weak and the fine motor control in my left hand is worse then usual. I still feel a little dizzy and of course all this is making me really clumsy: as you can see... Another broken glass... I feel like crap.

I'll be taking a cold bath soon, maybe that will help, all I know is that it was very stupid of me to mess with the heat when I'm already not in the best of health... The problem is, after a while, you get comfortable with your disability and forget that your not feeling 100%... You begin pushing the limits because without knowing it, you have become content with your 70% being your 100%... At least maybe in my case...

I need to be way more carefull... I could have hurt myself pretty bad today... Stupid, stupid, stupid.

Be careful out there in the heat!

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Q&A : Occupational Therapy Student Questions

A student from Saint Louis University recently emailed me asking if I would participate in a kind of Q&A and I of course said yes! She is going to school to become an occupational therapist, an important roll in the health care industry for many patients including people with Multiple Sclerosis. An occupational therapist works with patients to help them learn how to resume their daily activities or "occupations" with their disability allowing that patient to hopefully maintain a sense of independence . For example, and occupational therapist might help me learn how to compensate for my loss of fine motor control by teaching me various exercises that pertain to my particular daily activities and my particular disability.

Here is what she had to ask:

Q: Are you currently in school? If not, were you before receiving your diagnosis? 

A: I am in fact currently in school. I had just finished a semester before my original onset and was able to take a class this semester as my symptoms had been improving. At the moment my symptoms are getting worse which would make full time school a bit tricky so I can't guarantee I'll be in school next semester.

Q: Could you describe your main occupations (daily activities)? Of those, which would you say are most meaningful to you?

A: Besides the daily functions of taking care of myself I do a lot of writing. This is my main hobby whether it be blogging or working on my novel. Sometimes I am unable to to type as a result of minor motor control loss so I compensate by using voice recognition software. When I can't see what I am writing I simply make the fonts larger!

Q: In which occupations has MS affected you the most? (and why?)

A: MS effects every activity imaginable in some way shape or form. The little things are the worse such as buttoning your shirt or pants... Even simply grabbing a glass of water has to be done with care to avoid a mess... This is the case for me and many others who experience a lack of fine motor control in one or both hands. Luckily I only seem to lack the fine motor control in my left hand and I am right handed so I have done a lot of adjusting in things like typing. I can probably type just as fast now as I could before my MS as I have learned to mostly use my right hand and maybe use one or two fingers with my left hand as more of a “supporting tool”.

Q: In your blog you’ve mentioned that the weather in Southern California is not cooperative with MS; can you expand on your experiences with this a little more?

Also, are there any other aspects of your physical environment that you think affect your ability to do certain things? 

A: Environmental issues: California... California is definitely not the place for someone who has MS and wishes to be happy... We experience extreme weather fluctuations of hot and cold. It might be 90 degrees out one day and two days later it's hailing... The heat is not an MS patient's friend especially for me as I am hyper sensitive to even the slightest warmth. 75 degrees is pushing it for me... When I go outside in temperature over 75 degrees I quickly loose my vision and become very clumsy. After long expose to heat I become extremely fatigue even depressed at times.

The only other environmental factor that gets in my way sometimes would be any kind of step. Sometimes my depth perception is really bad so I have to avoid stairs as I feel like I am extremely likely to misstep and take a decent fall... Curbs and cracks in the sidewalk can be a nuisance as well but this is not always an issue for me, only sometimes when things are really flaring up. This can also be an issue when dealing with drop foot as your foot catches every little thing sticking more then an inch off the ground... This requires some conscious adjusting of my own gate to get around.

Q: I noticed that you have a link to your photography site on your blog; what a great hobby/job, how did you get involved with it? Did your MS diagnosis affect your photography at all? (Did you have to adapt anything, take less jobs, etc.?) 

A:  I had always had an interest in photography but after my diagnosis and “recovery” from my first exacerbation I decided to just give it a go for multiple reasons. One I wanted to experience all that I could, not waste any of my time as a functioning individual and end up disabled again wishing I had just gave what ever it was a go. Secondly I was noticing memory issues... I wanted to be able to record all my memories and look back on them. Thirdly I have always wanted to work for myself and I though if I could get my career as a photographer off the ground that would work great for my MS because I could work my butt of when I am in good health and rest when I am ill and not worry about loosing my job or trying to get time off, etc. Of course that's in a perfect world haha...

Q: I know that you’ve had some disagreements with your doctors about filling prescriptions too quickly or just to do it; do any of the prescriptions (current or past ones) have side effects so negative that they just don’t seem worth it to take sometimes?

A: My first Neurologist felt that I reacted very well to steroids and in comparison to other people that is true. I experience very little if any side effects when on Predinisone. Within a 6 month period of time I had already went through two solu-medrol steroid treatments (IV for about 1 to 2 hours for 5 days). The first treatment helped a lot, second did barely anything, and the third I stopped halfway through because I was experience horrible “roid rage” and mood swings... I just couldn't handle the stress of being stressed and felt that it was making my symptoms worse so I stopped the treatment on my own as my doctor failed to respond to any of my messages.

Q: Would you consider yourself to have a “hidden disability”? Have you had any experiences where strangers judged you or treated you poorly because they did not know about your disability? For example, a friend of mine with a “hidden disability” frequently gets bad looks and sometimes even a nasty note on her car windshield after using a handicapped parking spot. Any experiences like that?

A: So far I have not experienced being treated poorly as a result of my disability. Though I do a good job at hiding it I am very open about it and have no problem explaining anything to anyone about any of my disabilities “invisible” or not. But yes, at least half my symptoms are “invisible” in that you would not know I was experiencing any issues unless I told you.

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Happy Easter 2011 - MS IS BS

Happy Easter! I don't know about your part of town but here in So-Cal it's nice and gloomy! Even getting a bit of rain on and off! This for most people would mean a crappy Easter but not for me! This is my favorite kind of weather! Perfect Temperature for MS, not dry and nasty, and I love the smell of rain hitting the asphalt more then anything! I'm serious! I love it!

Anyways, I honestly don't have much to talk about today, I want to point out a few more things about my last doctors visit but I will save that for my next posting so for now I just wanted to wish a happy holidays to anyone out there celebrating today!

Take it easy!

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My Thoughts: Doctors, Are They All the Same?

So I saw my new neurologist today... At first I felt like I liked him much better then my previous but after a while it was obvious that he wasn't much different... He was not as quick to throw medication at me, in fact, he didn't prescribe me anything, he just recommended that I taper off my Prednisone after I suggested it... At first it seemed like he might know a little more about MS then my previous neurologist but he to was quick to shoot down the idea of any alternative medicines... Not that I was asking for anything, I just wanted to see if he was more open and he sure wasn't...

He basically told me that all patients with RRMS experience what I am experience as fast as my frequent relapses. He told me that eventually everyone just starts getting worse and worse so I asked him at what point I would be considered to have Secondary Progressive MS... He paused... He explained the difference as being basically what he explained RRMS to be... So I just dropped it... So we ended that conversation on the note that I wouldn't be getting better, I should get off the prednisone because there is no evidence that steroids help MS, and that I should just look for a job that is not too strenuous. I told him I didn't feel like I could safely work right now because of my weakness and balance and he finally gave in allowing me two months disability... Then we will see where "we" are at... Well... Considering not much has changed in the last 8 months I am pretty sure we won't be anywhere different if all we are doing is taking me OFF medication... Genius...

So are all doctors the same or what? Why is it so hard to find a doctor that actually cares about their patients and that wants to help??? I'm sorry but I can't accept that answer... I can't accept someone telling me that I won't get better, that this is permanent. My ego alone is forcing me to prove him wrong and I will. Eventually I'll find my own means of healing, all doctors seam to be doing is giving me steroids and disease modifying medication before sending me out on my way. So screw it, I might as well take my health completely into my own hands and use them just as a check up system and means of getting the medications and tests I need when I need them. You can't tell me that all the alternative medicines out there are useless when so many people claim to see such good results. Patients can't get help in America because doctors are either blatantly supporting pharmaceutical companies or just to prideful to let go of their bias and open their minds to new ideas of treatment. They find their way, get comfortable, and stick with it no matter what. It pisses me off... If I ever become a doctor some day, I'll be sure not to follow in their foot steps.


I need a doctor House!

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My Thoughts: Single Again

Once again I am single. Can I blame this one on MS? No, not really. MS no doubtingly didn't help but I can't blame this breakup on MS alone. Truth is my Ex and I just weren't a good match for lack of better terms... We had our issues, we worked through as much as we could, but in the end, if it's not meant to be it's not meant to be... And... I don't think it was meant to be. I won't get into the details because that's between my Ex and I, no one else.

I just want to say that much like before when I was first diagnosed with MS I am going to take this time to worry about me. To focus on my health and my life so that I can get things going strong, build a foundation. I never fully got the chance to learn how to deal with MS on my own as I always kind of had someone "with me" during the learning process so I was actually learning how to deal with MS as a couple rather then as an individual. Now I will focus on me being an individual again so that I can clearly work on my life and my life alone... I think this is the best thing for me right now...

Either way, I wish it didn't have to be this way but not everyone finds that perfect someone in time to work through all the troubles of life with right away... I wish we could have been stronger and been there for each other but our lives were pulling us in two different directions, we just weren't compatible anymore. Part of me wants to be mad, be a jerk, and hold things against her but I am not... I won't... She has a good heart and will do great things in life, she deserves better then that, we both deserve better, we just aren't the right ones for each other and so, I hold nothing against her.

To anyone out there having a hard time with their relationship all I can say is this:
You have to do what's best for YOU. PERIOD. It may not be easy but you HAVE to make that decision otherwise you are just hurting yourself. You HAVE to do what's best for YOU.

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Progress Update: This MS BS is Getting Old

As I have mentioned many times before, everyone has their up's and down's and as positive as I struggle to be I inevitably experience some down times... Right now is one of those times... I have been trying my best to stay positive but it seems as though life is kicking me while I'm down. My MS symptoms have been getting worse... My eft leg is really weak and has very little coordination in it. It also feels like I need to stretch it all the time but no matter how much I stretch it that tedious feeling won't go away. It's not painfull it's just unpleasent.

My vision has been pretty bad lately, it will come and go throughout the day but for the most part it has been pretty blurry and my blind spot has been rather present... The tingling in my left hand has also got worse and so has it's fine motor controll... Depth perception is a little funky and I am noticing a little lhermites sign today... My legs got really tingling after I went for a walk but right now they seem ok... I just feel a little tingling in my elbows when I tilt my heda down, hopefully that won't come back full blast...

Oh yeah, as a result of my left leg being weak I have to lock my knee a bit to walk better: something my body has already made a habit of doing when my leg is like this. So after a decent amount of walking (or usually by the end of the day) my knee hurts really bad from walking on it wrong... The other night was really bad... I can't stand it.

Also been fighting fatigue and really bad brain fog... Will forget what I'm doing, what I was talking about, won't be able to think of certain words and I can't remember where the heck I put my referral to Loma Linda! Although I probably would have forgot that one either way... I just hate how I can't think clearly...

Now on top of that I am loosing my mind because I wanted to have a car and job by now but I am no closer to that then I was two months ago... At least I don't feel like it... I have no money, bills are coming up, and disability cut me off... Basically... I'm SCREWED. I'm hoping I can pull some stuff together at the last minute but I hate living like this! I want a job with consistent pay, I want to be able to afford things, and I want to start saving money! I don't want to SURVIVE, I want to LIVE.

What makes it all worse is I feel like no one in my life (with a couple of exceptions) really understands how frustrating this MS BS is... How debilitating all the little things are when they all add up. It's just overwhelming! All I want is some simple understanding but I can't even get that... Sure I might look great but that doesn't mean I FEEL great or FUNCTION great... So now I feel like crap for "sitting on my butt all day" when I feel like I don't have much else choice... I HATE BEING CALLED LAZY! When I try to push myself to be active I start feeling everything get worse... I just want to see my new doctor so I can get some advice... I especially want to see the MS specialit at Loma Linda because I need to know how to get my life going, I can't function like this... Maybe I need different medications? I don't know... I just want this all to change...

Why can't life throw a little good my way? 
Not a lot, just a tiny, tiny, bit.... Just enough to help...  Ugh...

I have to go... I am getting even more frustrated trying to type... Can't hit the right keys... Getting tired of having to re-write every other word. Hopefully I'll be in a more positive mood in the next day or so, just trying to keep it chill for now. Had to vent, thanks for reading!

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Progress Update: PILLS! Back on Prednisone

Yup... Just when I thought I was going to be done with the Prednisone for a while I'm right back on it... Obviously I tapered off too quick and started experiencing withdrawal symptoms along with a flare up of MS symptoms... Got some more Prednisone and immediately took 40mg after getting home from the pharmacy. Two hours later I felt a bit of energy and a lessening of aches and pain. By the next day My aches and pain were gone, head ache was gone, vision was better, no nausea, and full of energy...

Wow... Talk about addictions and dependencies... So looks like I will be on this medictaion for a long, long time... That might even be a bit of an understatement...

Anyways, my MS symptoms haven't cleared up yet but that will more then likely take a while. Still don't have the best control of my left leg or hand and my leg is still a little weak... Tingling in my left hand is not as bad but still there. Vision did clear up a lot once I took the Prednisone but really that's about it... Just got to be patient as always. I'll keep you posted!

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Progress Update: Time to Slow it Down...

Well... So much for getting a job, making the money, and leaving my symptoms behind. At this point I would consider myself to be having a full out exacerbation not just a minor flareup. My left leg is really weak, loosing it's fine motor control, and coordination causing poor gate. It's probably hard to notice right now unless your looking for it because my body is compensating for it just like my first exacerbation my locking my knee in place so I can still walk on it. Last time this led to really bad knee pain but it hasn't been acting up long enough to lead to that yet.

Examples of loss of coordination and strength: I can tap my right foot up and down fast enough to play drums in a metal band but my left foot can hardly tap fast enough to step on a spider... If I can maintain my balance I can go from a standing position to a squatting position then back to a standing position with my right leg but with my left I collapse about halfway down...

Balance is pretty poor...I am noticing myself lean around a lot again sometimes almost tripping... Especially in the morning when I just wake up...

The fine motor control and coordination is also disappearing from my left hand again... Typing isn't so easy at the moment but it's not quite time to bust out the voice recognition software just yet... Getting there though... A good example of my poor coordination is the burn mark above... I was loading something into the oven and got a little too close to the rack adding another scar to my collection... I'm also noticing the strength in my left arm coming and going along with some tingling in my hand and fingers.

Vision is up and down... Sometimes it's hard to see about 10 feet away other times I see just fine. This morning I couldn't read the back of a pill bottle but at the moment I can read it just fine.

Horrible fatigue which crosses me over to my next issue:

Today I woke up feeling horrible... Body aches... Joint pain... Nausea... Headache... And really bad fatigue... After trying to get up and ready I realized it wasn't all going away with a cold shower like it usually does... I then sat down on my bed and 2 hours later I found myself waking up again... Knocked out just like that... I then suspected this had something to do with my Prednisone taper... I have come off a high dosage really fast after being on it for almost a year... I looked up the withdrawal symptoms for Prednisone and here is what I got:

• joint pain
• muscle pain
• fatigue
• headache
• fever
• low blood pressure
• nausea and vomiting

Pretty much explained that one... No need for further investigation here... Luckily I already called in a refill for my prednisone on Friday so it should be ready tomorrow... I also got an appointment with some random doctor tomorrow to talk to him about how I should handle my steroid regiment. I just need some kind of medical input while I wait to see my new neurologist and the specialist...  Based on my own research and experiance I am guessing I'll have to jump back up to around 40mg (give or take) and then start tapering down at about 5mg a week... We shall see.

I just want the withdrawal symptoms to go away ASAP as they are causing me more pain then the actual MS itself... Pft... Prescription medication safe? Hahaha... Right...

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Progress Update: Falling Apart Again

Sorry to all my readers out there for not writing in a while... I have been kind of busy... I have also been playing the denial card as far as my health goes... This week I have been noticing a few symptoms flaring up and getting worse day by day but I have kept finding excuses for why they were acting up for THAT particular day however, I can no longer play that card... It is now clear that my symptoms are flaring up despite the fact that I thought I was already experiencing an exacerbation! Now it's just getting worse.

This could be a result of stress and some heat here and there but the most logical explanation would be my decreasing of Prednisone. I have been on steroids since just before August of 2010 and since then I have also had 3 separate IV treatments of Solu-Medrol so I have had a lot of steroids in my system for a long time now... I have been tapering down for the last few weeks pretty quickly but this week I dropped pretty low pretty quick. I'm thinking that might have something to do with my sudden increase of symptoms.

So first I started noticing my sensitivity to the cold on the right side of my body was getting worse... Then I noticed I wasn't feeling heat in the right side of my body the same as I feel it on the left side so I would say that could be called "partial" or "light" numbness... Then I started noticing some weakness in my left leg and a little balance issues. Today I awoke to notice my balance was horrible and my left hand has a little pins a needles in it... My left leg is really weak and I can't control my foot too well. When I compare it to my right foot you can see the difference like night and day... My right foot has no problem tapping up and down really fast but my left foot can barely move up and down at probably less then 1/4 the speed of my right. This of course is effecting my gate but not enough that I can't compensate for it yet... Frustrating regardless...

So today I am in a horrible mood... I wanted to get off disability and find a job, start earning some money and start moving forward but once again my life is being put on hold... I can't seem to catch a decent brake and I don't know how I ever will! I don't know how I am supposed to find and hold a job with health like this! I suppose my best bet is to try and go to school and get some kind of job in the medical field as my chances there are probably much better then everywhere else... I am just really impatient right now... I want to move forward in life... I'm sick of sitting around doing nothing... I want to be productive and I want to see reward for what I do with my time... I'm sick of being broke... I want to be able to out out for dinner or breakfast every once in a while, do things I enjoy, and not have to worry about the bills. I don't want to be rich I just want to be comfortable...

Well... Hopefully the pharmacy will refill my Prednisone... If they do I'll be upping my dosage again until I can see my new neurologist on the 21st... See what he says... I'll keep everyone posted!

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