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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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