20091125

getting infused

im @ hospital getting my next tysabri infusion. Everything is going well, except one of the nurses with whom I most often deal is a packers fan : (
And I just realized i'm probably one of the few tysabri patients, if not the only one, who does live updates during the infusion.
And the hardest part, providing updates w/ one hand!


20091124

Already

When I got my last infusion, like always, I felt that my infusion was a long time away. But here it is scheduled for tomorrow : ( FML : (
Figures I'd get the disease which is only treatable via injections. FMLx2

20091122

Early thanksgiving

@ the hospital this year getting my infusion. My date to go, if strictly followed, would've been thanksgiving day, but who wants to spend thanksgiving getting infused? Not to mention that the infusion clinic isn't open on that day. Who wants to go see the walking dead on a happy day you are supposed to spend with you family.

The walking dead to which I am referring is cancer patients that go to the infusion center to receive their chemotherapy. but I'd rather deal with nurses somewhat skilled at giving IVs - most of the people going to the clinic have 'mediports' (no thanks, I'll deal with a needlestick every 28 days). I hear the lady at my doctor's infusion site is absolutely terrible at starting IVs, and knowing how I am with needles, that would be absolute terror every 28 days.

None-the-less, I'm expecting a typical infusion without trouble or issue.


teh suxor

20091116

So all is quiet on my MS front

Nothing exciting to post, and I suppose that is a good thing. The MS fairy has never brought me a good gift.
Never-the-less, I'm doing extremely well. And that is the most important part.
What neurological deficits I do possess are minimal and barely show. I don't think anyone would know something is wrong with me just by looking at me.

I'm only suffering from numbness in my left cheek and hand which I had acquired from that first nasty attack I had. Its a good thing I had just seen a nuerologist - due to my wife's using me as a test subject in a new MRI unit they had at her hospital - as I was put on a oral steroids (prednisone). Oral steroids aren't anything when compared to solu-medrol (aka methylprednisolone). That stuff taught me what hunger really is. After constant eating and feeling so full I felt like I was going to puke and still feeling hungry and getting so bloated I felt like I was having a period. That is when I realize how serious this disease can be. Without a doubt this was the worst episode from which I suffered.

The second diagnosed attack that I had - that lead to me being put on Avonex (Interferon Beta-1a) and then Tysabri (Natalizumab) - was a bought of optic neuritis. Man, was that terrible! I thankfully didn't have any vision loss, but I couldn't successfully track a single object with both of my eyes at the same time (aka I was crossed-eyed). I had to wear a pirate-patch during that episode. Man was that humiliating.

My first attack I didn't even realize was MS, as I hadn't yet had the MRI that revealed my condition. I thought it was just an ear infection as it had only lasted a week, but I clearly remember thinking to myself in passing, 'what if this is something more serious?' But that thought passed quicker than the symptoms. I had to reschedule an interview I had for a new job downtown, which I had landed and eventually quit two months later, as it seemed to be a lot more difficult than all the other jobs I had in my life, In retrospect I really think that was an attack.

So thats the story of my MS life, which I had to post the details as I have started a new TK blog.
I've already put a replacement server up @ home, but I think I'll leave this site on google's servers as they are much better equipped to handle traffic.

A good example...

of how idiotic people can be with the use of their words. I ran across an article slamming blockbuster , when I read David's synopsis from which the following is taken, '...someone in a cinema with what seemed to be a low resolution web cam and Multiple Sclerosis.'

Even though I don't believe in hell, I hope you rot in the seventh level of it for such a stupid statement you dumb cunt! I have MS, and I assure you I'm just as capable of holding a camera still as a person who doesn't have MS, probably more so as fatigu is a primary symptom, not spasticity. I suffer from a debilitating chronic disease which through no fault of my own I've been diagnosed. Let the jokes and criticism fly, you insensitive clod! (thanks to the millions of /. forum posters for that awesome statement)

Fuck you David, fuck you very much! I hope you are soon found to have MS, or something worse, so that someone can make an insensitive comment about your condition. FOAD!!!

FYI:
With today's treatments MS isn't what it used to be. One can avoid disease progression with such treatments, and therefore people with MS are capable of holding a camera still. A more appropriate choice would be Parkinson's Disease (aka Michael J Fox's disease), just in case you wanted to insult more of your readers. I wish a terrible AIDS death upon you aussie cunt!

BTW, those are terrible movies with the exception of HaK:EFGB. So I guess that makes you a cunt with bad taste. Fuck you you fucking fuck! Its called a movie theater!