A New Year

So my last post was in June of 2011. Here's a bit of an update of what's happened since then.

It turned out we are not eligible for Medicaid, though I still haven't received a written notice of that decision by mail.


I was approved for disability in September of 2011, & have started receiving monthly SSDI deposits. I will not be eligible for Medicare until 24 months have gone by, September of 2013.


Dr. Howard recommended Tysabri as my Disease Modifying Drug (DMD). I tested negative for the antibody to the JC virus which means I am considered low risk for Tysabri's scary side effect (PML). This is really great because other than that Tysabri is terrific compared with other DMD's, collectively known as the CRABS. (Copaxone, Rebif, Avonex, and Betaseron.) Whoever made up the acronym found a great way to express how patients feel about these treatments, which require frequent injections, often self-administered, and almost always make almost everyone miserably sick for most of the time.

Tysabri means going once a month to an infusion center where nurses check your vitals & hook you up to an IV drip. The infusion takes about an hour.

The infusion center on E. 17th St. is usually quite crowded. Patients sit in reclining chairs which are pretty comfortable, except I've come to accept that I am just too small to easily work the footrest. Plus an hour is a long time for an MS patient to spend without a bathroom break. It's also a long time for anyone to stay in one position. But I've realized this is not a big deal. It's a treatment for a serious incurable diseae, not a day at the beach. Once the infusion is finished I may need to get out of that chair in a hurry to go to the bathroom, so in the future I will forego niceties like opening the footrest or sitting cross legged like I do at home. It's not my home, and it's not like I have to stay there 3 weeks, or even overnight. It's just an hour.

But didn't I used to be scared of IV's?

Yes I did, but I seem to have gotten over it, by the following steps:

The 2 MRI's I had at Beth Israel were W/WO contrast, which means at some point they hook you up to an IV which injects dye into your bloodstream. For the first one I had 2 mg of Atavan which pretty much put me to sleep. I remember dreaming I was Snow White in her glass coffin, which seemed cozy instead of scary, and my husband more or less had to carry me home on the bus. I also imagined they  gave me an injection rather than started an IV. That kind of implies I'd gotten over my fear of injections at that point. Maybe I thought differently while considering Copaxone, the first DMD Dr. Howard considered, which requires a daily self-administered injection. I'm not sure.

For my 2nd MRI I told the dr. that 2 mg was too much, so he cut it down to 1. I was alert enough to realize it was an IV, not an injection, and by this time neither seemed so scary anymore.

Step 2 was this summer when I stopped putting off dental care. Having blacked out after an injection of Novocaine when I was around 7 is what got my injection phobia started in the first place. It turns out Novocaine has improved a lot. The needle is tiny, it only hurts a bit, and the effects do not come on with a sudden rush of numbness, which is what used to freak me out resulting in blacking out. So a monthly IV infusion is not scary anymore.

In December I had my 6th monthly infusion. So far I don't seem to have any side effects, which are mostly immune suppressant stuff like having trouble fighting infections. My immune system has always worked pretty well when it isn't attacking my nervous system, and it continues to do so, Tysabri or no Tysabri.

Update completed.