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My Life with Multiple Sclerosis!

Life with Multiple Sclerosis

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2009 August 18 : I'm starting a FOUNDATION!!!

Well, it just came to me the other night... I sit around one day, riding my motorcycle, wondering when the shoe will drop and I'll never ride again. How long will that be? Etc... Well, it might have already come and gone...

Anyhow I thought, you know, I used to be such an active person. Goals, dreams, etc. Now I'm going to be a zombie... Though obviously this is exadurated right now due to the Solu-Medrol effects and my eyes literally keeping me sitting on my butt doing nothing... But the fact does exist. People end up becoming zombies from MS and other diseases. Not all, but...

Then I started thinking about the Michael J. Fox Foundation and I wish there was one for MS. I want stem cells. I'm trying to get into a study myself for MS Stem Cells and the funding got pulled... So CRAP! What do you do... I was thinking about Mr. Fox's Foundation and why there isn't one for MS. But then yet, instead of just making one for MS, why not make one for ALL stem cell potential benefit people who can't move very well or possibly at all in the future. Parkinson'x, MS, and more.

So, well, I just made saveazombie.org. I paid for it for the next 5 years. Odds are I probably just tossed my money away but, I have the tech skills to setup a forum and website and what not. If I can find someone who knows how to make a foundation work and get it off the ground, we might be able to get some of these studies going and for more than just MS.

So... I might have just tossed a bunch of money down the drain, but hey, if somehow this helps one person with something, it was all worth it... Anyone know how to get actual funding for a foundation and get something off the ground so we might actually be able to help people who need it? Otherwise, there might be more people like me who DREAM of stem cell therapy only to realize they're instead likely looking at a power-chair instead.

If you have even the weirdest, wildest idea, contact me on the main website 'email me' link or email chris at this domain (doesn't get much simpler than that).
Posted by: SirGCal Comment

2009 August 17 : OMG... Save me!

I woke up this morning... Monday, second day off the new Solu-Medrol...

MY EARS!!! NO!!! MY PRECIOUS FU@#ING EARS! I sound like I'm underwater in a hurricane. I hear electronic buzzing from everything. I had good ears before but this HAS to be a failure. Sitting in my office, I can hear power supplies, the routers, printers, even the alarm clock (electric), just that little high-pitched hum electronics make that even dogs don't hear. THIS is so freaky! AND I can find the items.

It seems to be subsiding some. Perhaps I shouldn't do my inversion table first thing in the morning... But it makes the back feel so much better... :-/

I thought of a new slogan too. The "Save a Zombie Foundation" for advanced treatment in Stem Cell research for all of these similar diseases. Now If I just had Michael J. Fox's money to get it started... LOL... I tell ya, to be sick and on a quest, it sure helps to have coin in your pocket. But how does a dork, lowly soon to be forcefully put on social security software guy go about it? I'm so clueless...
Posted by: SirGCal Comment

2009 August 15 : More Solu-Medrol = FUBAR eyes again..

Well, it happened again, after the third day, eyes went wacko... Can't sleep. I can pee just fine now though... Go figure. But my eyes are all wacked up again. Right eye again, double/blurry vision, can't focus, etc. It's also making my stomach a real twister... Today's the last treatment thank god. Tastes like crap.

Legs and feet still numbish. I've been working on my inversion table and that seems to help some. Still not confident enough to get on the bike though. Dizzy, bla bla... Yuck... DAMN THE EYES!

Other weird thing, is my TEETH are numb... Does that make much sense? And I did find out that if you do the Solu-Medrol in say a small slushy/smoothy, then chase it with another, then wash it down with like a dozen oreos, the taste isn't quite so bad. Oreos taste like crap with it but, for some reason, it kills the aftertaste of the drug (and my wasteline)... But there ya go.
Posted by: SirGCal Comment

2009 August 12 : More MS...

Legs and feet are still numb... This sucks... Today also they went into an uncontrollable shaking fit, enough my neighbors came over to my aid ready to call the ambulance. The shaking seems to be getting worse. Thankfully they are little fits (so far) and not constant. when that time comes (I pray never), I'm... well, screwed... Speaking of which; I thought I was doing better while writting this when the leg just went out of control jumping all around. Now this action makes me nervious for the bike... I already know my days on it are numbered baring a miracle but... I thought I'd have a few years... Maybe not...

I spent another two hours in MRIs to try to find the 'just another MS problem' item showing a new mark on the spine. We looked at the neck and at the middle back down to the belly button. I'm not sure if it's good or bad but we didn't find what we expected to. SO... Back on the Steroids... You guessed it Solu-Medrol. F@#$%ing sh#!...

But this time no IV. A powder... But after the first two days (and the bill) I'm not sure this is the better route. First off, the IV was free (to me). The powder cost me $150 out of pocket. So if I ever have to do it again, probably IV... Heaven forbid... But the powder taste like crap coated with worse crap and a sprinkle of coal and death thrown in.
Read More Posted by: SirGCal Comment