i think the writing blog needs to merge with the scleroded blog. Because my life now is all about getting on with managing this household, disabled schmisabled. So I don’t go to work, but we still have to eat. About keeping things clean, don’t ask.

So I'm not spending a lot of time writing, and my interlinear artscroll siddurim are taking the central place writing projects used to hold.

But I I still want to do something with stuff I've already written. Basically I have one short story that is finished, that I want to start giving away, especially since I realized recently that the characters were based on people in my family, sorta kinda. Maybe I’ll post it on my panix webspace & give people a link. Or maybe on my writing blog itself: lindatalisman.blogspot.com

Then there’s my novel, THAT AND A TOKEN. I’ve had some ideas for it I want to work on, and I suppose I really don’t need to decide right now what to do with it, other than keep giving revisions to the readers I already have.

But the main thing is, there’s work to do, even if it’s only notes about what I plan to do in the future.

I described the old infusion center on 17th street in some detail, so I should mention the really nice luxurious one on 38th street.

Instead of a crowded room full of baby blue recliners, every patient gets their own little room with an extra chair, which I hope my husband will use on Thursday. Really nice.

I was just using this blog to remember certain dates.

I started with Beth Israel neurology in 9/2010. Switched to NYU MS Center at the beginning of 2011. I was awarded SSDI in November of 2011.

My first Tysabri infusion was June 13, 2011.

I began taking Ampyra once a day on 11/19/12, & twice on Thanksgiving, 11/22.

The first thing I noticed about it was how it evens out my energy, so that it doesn't fluctuate so wildly. I can stay awake during the day, and can sleep at night. There are other good effects, but they come & go. Especially since at the end of November we both got the flu, so that messed everything up. So I am very hopeful about the Ampyra.

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.

My trip to the Medicaid office

To deal with any government office, the phone doesn't help you. You have to go there. "Going there," wherever it is, is a lot harder than it used to be. This seems especially bitter when you wouldn't need to go there if you weren't disabled.

I went to the Chinatown Medicaid office on Chrystie Street. By obsessing over Hopstop, plus google & yahoo & mta maps I was unable to determine exactly how many blocks it was. Did I ever worry about such things before? No. I never even had the patience to wait for buses before. I just walked. Fast.

That was another life.

M14 from 6th Street to Essex & Grand. Grand Street to Chrystie Street. Chrystie Street to #115.

The sun was very bright, but not terribly hot. As I was leaving the bus stop on Essex & Grand one of my shoe buckles came loose. With the help of my cane I limped back to the stop so I could lean against the shelter to fix it, awkwardly fumbling the  strap into the buckle. Onward.

Step by step, I got there. Getting there, wherever it is, takes such effort that by the time you get there you either forget why you went or the reason, no matter how important, seems beside the point in comparison.

The gentleman at the front desk said my application was denied on June 1 because my husband's income, $400 a week for a family of three, is too high. I told him I was never notified of this decision. He gave me a printout of the instructions on how to request a fair hearing, highlighting the phone number. "Can you tell from this system that the reason I'm not working is I'm disabled? I have multiple sclerosis and have high medical bills?" He gave me a ticket to wait my turn to see someone else.

I waited probably over an hour, but all they could tell me was go back to the place where I applied (12 W. 14th St. At least it's easy to get to.)

Now I realize the instructions on how to request a fair hearing are not the same as the notification you get in the mail, which has some number pertaining to your case which you use when requesting the hearing.

The highlighted phone number is always busy.

I  think the most important thing is to get them to send me that notification. I'd like to ask the advice of my former employer, who is an attorney who deals with NY Medicaid all the time.

The trip was exhausting, with very little to show for it.

Yay! I am receiving treatment!

Now, on to Medicaid hassle.

preparing for 1st Tysabri infusion today

Practicing with iPod has moved up on my list of things to do.

I have never been able to get any kind of headphones to fit properly or provide decent sound. It's not loud enough. I adjusted the volume using the wheel, I adjusted the headphones so that they're snugger, yet it just doesn't do it for me. I suppose my head's too small. Somehow nothing seems to compare to listening to vinyl records on the stereo we got from Blue Chip Stamps when I was eleven...