Gilenya: The Pill Of Things To Come
Will and I spent most of last night in a smoky club in Charlotte called The Milestone not being able to hear Young Widows because the place was tiny with awful acoustics and the bands had huge equipment. The mold is all that keeps the place from going up in flames everytime someone puts out a cigarette on the floor. The audience there seemed like great people who all seemed to know each other. I truly wish more great shows would come to Greenville or that we had a similar scene of seemingly good people who just love music. Also, apparently since seeing Blonde Redhead a few months ago at Variety Playhouse in Atlanta, they have come out with extra big PBR (this appears to be a requirement).
Getting to bed at about 4:30 am was probably a mistake. Although it was really great getting to see our friends Jon & Britty and they introduced us to Vietnamese food for the very first time.
This was probably not the best way to spend the evening before my first dose of Gilenya. I spent the whole day in the neurologist’s office hooked up to heart monitors and trying to stay awake. I finally finished a book I’ve been meaning to read by Wendy Rose and got a few other things done as well. For the most part, it went alright.
Unfortunately, I didn’t think to remove my dark nail polish before this so they had to send someone out to buy nail polish remover before I could begin. There is nothing like the shock on a man’s face when he realizes that nail polish remover actually removes nail polish. The doctor went over my starter kit with me just to see what was in it. I will never understand why pharmaceutical companies waste so much money and marketing on useless things like pens people will never use, tote bags they don’t want, etc etc. And then there was maybe one valid bit of literature with it. Mostly there were packets of word puzzles (the words of course were things like lesions, myelin, etc), how to do exercises like lifting your toes, etc… Obviously we all need instructions on toe-lifting.
Two weeks worth of medication were also included. Gilenya has strange packaging. You pinch one side of the box and pull on the other. When I received my first month supply from Curascript the boxes did not work right at all. It was a wrestling match. These, however, worked perfectly. I was ready for a fight but the thing just opened correctly and I took my first dose.
Having had little sleep caused a problem. When we came home last night all smoky clothes went into the washer before we showered and went to bed. So today I stole Will’s jacket. After they hooked up all the wires and left me in a sleep study room so they could watch me with cameras, I covered up with Will’s jacket and started reading poetry. So, obviously, pretty soon the tech came in and woke me up shaking me and just stuck a blanket over me. He said, however that my heart rate was within the normal range.
So I tried to stay awake, I really did. But now here I have Will’s jacket to prop up on, music on my iPhone, a blanket, and poetry on 3.5 hours sleep. So at some later point he woke me up again. Heart rate is too low – time to take a walk. I’m not sure he knew why I was there. He seemed suspicious that the medication was making me favor my left side, and make sharp turns clumsily. Also, he really needed a cigarette. After I explained that I was there taking MS medication and had muscle weakness and knotted muscles on my right side I think he got it. Not much I could do about all of that. Adding Valium to the mix today seemed like a bad idea so I had avoided that.
Back to bed, determined to stay awake, I did fairly well. They brought me a Firehouse Subs sandwich which was the first time I’ve had anything from there. I had the Italian. It was awesome – especially once I got someone to bring me a napkin. Then the heart rate went down too low again. I finished my Wendy Rose book walking in place (although I preferred Bone Dance to Now Poof She Is Gone) and read about half of the The Bell Jar. Which is about time, because Sylvia Plath’s Ariel has always just been one of my favorite things. I even gave a copy to my 12 year old niece recently. I’m assuming either the genetic link will make her love it, or the fact that she’s 12 and it’s Sylvia Plath poetry will make her hate it. Who knows.
Eventually my heart rate rose enough again and I was able to sit back down. The rest of my first dose went without incident. According to the literature, I’m allowed to continue taking it if I can keep my heart rate above 55. The lowest I got without exercise was 58, but it stayed at that for about 20 to 30 minutes even with exercise. Over the next month my body should adapt. In the meantime I’m mostly just cold and sleepy.
The first dose should be the most difficult and tomorrow will probably be about the same, maybe a little better. I’m not too worried. Now I just have to keep a check on my vision and liver enzymes.
Milk Thistle - Don't worry - I take it in pill form.
Maybe it’s silly, but for hundreds of years many people have used Milk Thistle to protect and heal their livers. I’m adding that in with my medication. It can’t hurt, surely.
I learned today that my neurologist favors socialized healthcare (smart man) and that he likes Atlas Shrugged (the book, not the movie – don’t get me started about this – Ayn Rand could create some inspiring heroes, but she is seriously screwed up and what is with all the rape in her books). I also asked him how many MS patients he had (about 30) and if any had ever asked him about medical marijuana (no, but now 1 had). He saw it as a medicine that will be difficult to really peg by the FDA to regulate as medication, was aware that THC wasn’t the useful component for treatment (even though it is available in legal pill form), and doubted that South Carolina will legalize it anytime soon.
I spent hours recently emailing everyone in the legislature about this. I received exactly two coherent replies
- 1. From Chandra Dillard, whom I’ve met. She’s responsible for a great deal of what’s great about the West End of downtown Greenville. She spoke with us at a neighborhood meeting once a few years ago. She confessed that she needed to educate herself more on the matter. I confess, I really liked her a lot when I met her and have always voted for her since.
- 2. From Senator Jim DeMint. It was even rational. He pointed out that regardless of what the states do, it’s still a federally regulated substance. But he said he would keep my opinion in mind if legislation ever came up regarding it.
All other replies were badly spelled and grammatically incorrect versions of “This ain’t my job.” Maybe they were just high when writing it. It inspired Will and I to come up with a better field sobriety test than walking in a straight line, etc. Try to get someone to do some division, multiplication, or add more than 3 numbers together. It will be both hilarious and less work. Most of our replies from government officials have always come back as if a D student in the 3rd grade wrote it. Nothing against 3rd grade D students, it just seems odd that they our politicians would use them for replying to consitutents’ letters.
Think South Carolina should make an effort to legalize “compassionate care” (aka medicinal cannabis) for patients who need it? Then go have fun harassing our government. Good luck navigating those crappy websites.
So, for now, I’m definitely on Gilenya, although future results might change that. Pollen and hope are in the air 
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