My Saturday Evening Post

I'm sitting here, arm still burning from last night's shot, and I'm feeling a little grouchy about it. Yeah, okay more than a little grouchy about it. This isn't what I signed up for when I agreed to this stupid clinical trial. Grumble grumble grumble. Oh sure, I knew there was a chance I would be assigned Copaxone, but I had a two out of three chance at the other, more convenient medicine. TWO out of THREE. Grumble grouse gripe grumble. Smart ass me would say to someone else, “That's why they call it gambling.”

Then I realized (yes, like it was some wondrous epiphany), I can wallow in self-pity, or I can move on. I could be appreciative that there is medicine available to me that has been proven to provide relief in year after year of use. I could be grumpy about having to get a shot daily, or recognize that I made a conscious decision that I want to feel better, through nearly any means necessary. There's no getting around it, it really does suck. Not gonna sugar-coat it; it's extremely unpleasant. But, I like being able to walk. Being able to dress myself, bathe myself.

I had another thought, too. This was the first time I made an actual choice about medicine. The other times, it was a doctor saying “We're going to try this. We're going to do this.” I made the choice to do this. I didn't get randomized for the oral drug. Oh well, suck it up, move on, and get over yourself. You say you want to feel better, then DO something.

I usually refrain from comparing myself to other people, but...as much as I hate this medicine, there is someone out there who can't get this medicine and would be elated to take it off my hands. Feeling better by comparison really isn't my style, but keeping things in perspective is important, I think. Especially right here, right now.

I may never know why I didn't get assigned the oral drug.** Because I believe that everything happens for a reason, I like to think I was being protected from something, rather than being flipped off by the Cosmos. Maybe it's to teach me that I'm stronger than I thought, that I'm bigger than a needle (in the literal and metaphoric sense), to appreciate what I have instead of focusing on what I want, or maybe it's a reason I haven't thought of yet.

I remember back to the last new drug I was going to try, Tysabri. I didn't listen to the Universe warning me that time, because I was so steadfast in my “NO self-injection” stance.

I was scheduled to start Tysabri. An infusion once a month. Administered by a nurse. NO self injection. WOOHOO!! The week before my first dose, Tysabri was pulled from the market. Months later, it gets reintroduced to the market with a black box* warning. I go to the office for my first infusion, there was some issue (I don't remember if it was paperwork, or no nurse available- it was something like that). Whatever the reason, I didn't get the infusion that day. I finally start on the medicine. Pffft, fizzle. I didn't feel any different taking it, and my blood work started to go a little wonky. My doctor discontinued Tysabri for me.

So now I'm reminding myself that you can't always get what you want, but if you try sometimes, you get what you need.

*A black box warning is the strictest warning put in the labeling of prescription drugs or drug products by the Food and Drug Administration (FDA) when there is reasonable evidence of an association of a serious hazard with the drug. Source: Google

**For those of you following along at home, you might remember that I really dislike not knowing or understanding the “WHY”.