Tuesday, August 14, 2007

MS and no medication = working without a net

I was sort of melancholy as I finished up today's tests... I am now done with that phase, I've passed them all and will start the trial next Monday. My date with "Randomization" is Aug. 20th at 8:30 a.m. I wish they wouldn't call it that. It sounds like they are going to turn me into a zombie from Dawn of the Dead or something. Like I'm going to randomly start walking around like Frankenstein after I get a dose of drugs.

I asked about my current meds and when to stop them. I have been on (and off) Copaxone for the past 8 years. I'm sort of going to miss stabbing myself daily with a needle. Yeah, right. I especially like the dance I have to do with Medicaid and Walgreens every month in order to get the medication approved and have Walgreens fill the Rx. I have Medically Needy with a Share of Cost. My share of cost is only $50. I was just FIFTY DOLLARS shy of being able to get full Medicaid. It was some case workers idea of a cruel joke. I have to show that I have spent the money on the medication in order for them to approve the medication, but they won't reimburse for money spent. Between the nice pharmacist as Walgreens and I, we came up with a solution. He prints out a cash receipt for the $2100.00 of medicine, then deletes the transaction from his computer. I take the receipt to HRS and turn it in for "tracking". They say "oh, you paid $2100.00 for medicine, so that more than covers the $50 we require you to spend. You can now have your medicine." Then I go back to Walgreens, they run the medicine through again and I get it. Medicaid only gets billed once.

Anyway, I asked the lady in charge of orchestrating all my testing when I should quit my meds. I told her I'd been off them for a week already because Medicaid was giving me a hard time and I had run out. I just got a call from Walgreens today saying it finally went through. She said "Don't do any MS meds before Monday." I tell her I have a month's supply waiting for me to pick up; what should I do with it? She says to keep it in the fridge and if I have trouble during the trial and have to get out, I'll have my meds waiting for me.

Why is it that everyone's so hell bent on considering that I may get out of this trial? Do they know something I don't? Do I exude "quitter" mentality? I just don't think it's the best thing for my attitude going into this thing to have every other sentence end with the clause "in case you drop out." So then we start talking about the possible side effects of the medications I may or may not be getting on Monday, since that would seem to be the deciding factor in whether or not I stay in or get out.

She says when I show up Monday, I will get the pill (probably no drum roll or anything exciting involved). Then I will get the shot. Now, I've been stabbing myself, like I said, for 8 years now, so I'm no stranger to needles. It's just that those needles have been itty bitty small, under the skin needles. This needle is going under the skin, alright, but it's also going deep into my muscle so it's much longer. Kind of like a spear (the way I'm envisioning it, anyhow).

I know I will eventually get used to this needle, too, but it's like starting all over again. I remember the very first time I ever injected myself. It was in the top of the right thigh. I had to sit there squeezing a pinch of fat with one hand while I made practice motions over and over again in a swing of the needle hand toward the thigh. It seemed like I'd never work up the courage. All the while I'm replaying the instructions of the nurse who had come to my home the previous day to give me a lesson in shots. He said "in nursing school we practiced with an orange, stabbing the needle into it. It'll be just like that." So I'm figuring even though I didn't have the dimpled orange-peely skin, perhaps my body is thicker than I had imagined and I will have to give it some real "umph" to get the needle in there.

When the moment came and I got the courage to actually pierce my skin with the needle, it went in like I was made of butter, not orange peel. I buried that needle to the hilt so quickly it shocked me and my first reaction upon seeing it was to get that thing the heck out of me! I yanked it back out purely by reaction only and ended up having to stab myself all over again.

So I'm back to that level of anxiety with a brand new med that I've not heard the best opinions of. Avonex is an interferon and can have some nasty side effects like muscle cramps, fever, chills and general flu-like symptoms. I'm not looking forward to any of that.

On the other hand, if I get the Fingolimod (which I'm really hoping for) then I still have to stab myself with the huge needle anyway. The fear of the needle isn't going to be something I can skate around. D-Day is coming and I'm going to have to get used to pushing that honking big horse needle into my leg regardless of whether the syringe contains Avonex or sugar water. At least it's only once a week. Once I have gotten over the shock and repulsion of having to do it the first time it will be time to do it again, only I will have the added advantage of forgetting any pointers I have learned because it's been a whole week since I did it last.

My new fear du jour is that I will relapse while I am off medications. I'm working without a net here. I didn't realize that this particular fear had used my mouth to exit my head and find my trial coordinator's ear. She said it was all in my head. She said they'd done so many tests on me and none of them showed any signs of impending relapse. Whew!

I'll probably take a break and pretend that, for the next six days, I don't have MS at all. I'm laying on the beach listening to the surf -- if only in my mind. I have a feeling the next 6 days are going to go by way too fast.

1 comment:

Lorraine said...

Don't forget to stop and pick up Dad on your way down the beach! He'll be the best help ever! ILYWAMH