20150829

Why?

I certainly hate being lumped in with the cancer patients for my infusion. I don't hate the cancer patients. I feel bad for them. At least they have hope of 'beating' their cancer. Alas, at this time, there is no known cure for MS. Which means I wouldn't have a cure for at least 10+ years. I prefer the medication be on the market for a long time. I'm already enough of a guinea pig with the Tysabri; it's working so very well though.

Anyways, back to being lumped in with the cancer patients.

It kind of sucks. The despair you can feel coming out of some of the infusion rooms. Death lingering in the hallways (but that could just be the whole hospital). On the plus side, the AIC staff probably think, "Oh good, we've got the MS guy who isn't looking bad at all* to treat for the next two-and-a-half hours." All why sitting there knowing I am DX:340. I know that it won't (shouldn't at least) kill me quick as a cancer. For that I am thankful. I am thankful there is a medication to halt/slow MS progression that is working (although in itself can maim/kill me). I am thankful that I have remained Relapse Remitting (RRMS). I am, OTOH, not thankful for: having invisible conditions, decreased mental and physical capacities no matter how slight. Needles, I freaking hate needles - bad disease to have if you hate needles. Dealing with people, I'm one of those just leave-me-alone guys. Having to deal with doctors, nurses, and even other patients just doesn't go along with me. But one endures. That is all I now know. You must proceed forward, no matter the outcome.


*And that's why they call it an invisible disease until you're fadged up. And I think the AIC staff knows better. And you see how all over the place this post was. My new reality.

20150828

I Had Two Month Infusion on Wednesday

This time was kind of miraculous.

I didn't feel the need for the tysabri fix for the two weeks proceeding my infusion. Golden!

And when it was time for my infusion, they got the needle in on one stick. Win!

Then I didn't get the lethargy typically accompanies my tysabri infusion. TOTAL VICTORY!

20150713

Yeah

I'd like to know the etiology of my MS too, but I doubt we'll get that answer in our lifetime; it certainly shouldn't dissuade us from trying.

It's in an article about mitochondria and the role they may play in MS development.

20150620

Oh Yeah

I saw someone post a SK meme that they were on tysabri for 5 years and relapse free.

In typical Murican manner, I am going to one-up you.


(I was on avonex for the year before tysabri, with a 3 month wash out period)

20150601

Murica!

Where the sick are seen as profitable (for the drug companies, at least)

Since introduction, the two MS drugs I've been on have seen their rates skyrocket.

the first drug I used, Avonex, has increased 381% since it's introduction.

The drug which I am now on, Tysabri, has increased by 101.5%.

Damn, it's a good thing I have good insurance...and my wife works at a hospital! Of course, that is how I found my MS.

And if these greedy drug companies weren't so profit driven, this wouldn't be a problem; but in Murica! it's all about how much you can make. And this is why Capitalism will be replaced and Murica! will be ousted as the World Reserve Currency eventually.

My favorite quotes of the article:
"Every time a new drug came onto the market, the price of all the drugs jumped"
"The standard economic principle that more choices will drive down prices doesn't always apply in the topsy-turvy world of drug economics, especially in the United States." (Emphasis mine]

Something is not right here.

20150505

Yesterday

Last night I was going to the bathrooom to take a leak. When I was standing there, I felt like I was going to pass-out; however, I had just started urinating after a very challenging start. Having accomplished starting going, I certainly didn't want to stop. I figured I could complete the stream and then lay down.

NOPE

I regained consciousness after I was sitting on my ass with my back against the wall.

Holy shyte.

Note to self, If I feel the urge to pass out, immediately lay down.

Don't complete the stream, don't think about trying to put it off. LAY THE FSCK DOWN!

Worst part of it all isn't that I passed out, but my ass hurts...really bad. I must've landed on the corner where the tile meets the floor. I'm in pain here, but I didn't want to take any pain management for fear of something being wrong. I won't be able to until tonight after the kids go to bed.

Oh, did I mention what I think caused it? I found a dent in the roof of my 15 day old 2015 Explorer. Gdmfsob! It'll have to go to paintless dent repair, as I don't want it to go to the body shop and get bondo. It's driving me nuts. I hate the person who ruined my new car feeling and caused me so much distress that I end up falling over in the bathroom?

Thank you for ruining the new car. I KNOW WHO DID IT!

20150428

Though I'm not part of the study

I am on extended dosing, and the results are GOOD! There have yet to be any incidents of PML in the extended dosing group!