2007-06-20 - 11:27 a.m.
After 18 months of no serious MS treatment, I just started on a new drug called Tysabri. I was off treatment so long because I used to be on a chemotherapy drug and I found out that was making me infertile. So I went off it for a year (a medically debatable idea) to bank sperm so I can have kids. Which I did at the start of the year. Unfortunately, I didn’t realize that getting insurance approval for the new drug recommended by my doctor here would be such a lengthy process and apparently should have been started like a year ago. What, were the insurance people like “Yeah, that’ll help, but we don’t want to pay for it…”?
But the appeals finally went through (I have no idea why it was finally successful now) and I had my first infusion yesterday. Taking it is so much easier than the chemotherapy drug I used to take (Cytoxan). The whole procedure takes less than two hours, as opposed to the entire day it did before. They only give you 50 cc’s of saline fluid afterwards just to clear your IV line, as opposed to the three liters I used to get before to flush the poison from my kidneys and bladder. Most importantly I felt just fine immediately after, as opposed to feeling sick and miserable (having been poisoned) for days afterwards before.
I even met a very nice guy there. He’s a big fan of Tysabri; it seems to have reduced his level of disability. He used to walk with a cane, now he can run (!). I’d be happy with just stopping progression, but it never hurts to hope. He was also about my age and quite intelligent. I was actually kind of proud to be in his company, which is unusual given that I don’t normally like people I randomly sit near in an infusion room. Indeed, I sometimes say that I hate other people with MS. Of course Nya pointed out that when I encountered them before, I was maybe not charmed because I was sitting there getting chemotherapy poison dripped into me…
I’m also very excited because I just started getting home visits from someone paid by the state! She’s a nurse, but I don’t really need her to do hardcore nursing stuff. Mostly, she cleans and helps organize our home. She makes sandwiches and does laundry. Small tasks all, but they make a world of difference to me. She’s becoming an indispensable part of my life. To keep this benefit, I have to jump through some hoops with Social Security, who are being a pain about my dotting i’s and crossing t’s. Whatever, I’m sure they’re used to people with faked “disabilities” trying to squeeze the system. I should go to their office in person in my wheelchair to show no, I really do have MS!
Finally, there seems to have been a breakthrough with my insurance on getting me a new power wheelchair. I’ve been working with the Scooter Store (because I see their ads on TV, same as you) on getting it and we got stymied because my insurance wanted me to get an in-home evaluation by an independent physical therapist. It’s frustratingly hard to find a PT who does house calls, but we may have finally gotten one. A new chair will certainly be better tan my current one, which is ancient, decrepit, and was bought on Craigslist for $200.
I think if that comes through, I may give myself a point upgrade to Geoff 9.1…
© 2007 Geoff Gladstone
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