My insurance, in it's God-Complex-As-Only-An-Insurance-Company-Can-Have, cut me off from the medication that resolves (medical jargon for "gets rid of") my migraines. Apparently due to cutbacks I am allowed 48 shots of sumatriptan each year now, and I have planned my headaches badly. Bad Debi. Bad, bad Debi. Actually, if you think about it, that's 4 shots a month. That's more than I usually use, so I'm not sure what's up with me this year. But the fact is I have cluster headaches, not normal migraines. That diagnosis has probably gotten lost in my paperwork because the sumatriptan now exists and has worked so well for me. OH, AND NO ONE HAS EVER COUNTED HOW MANY DOSES I'VE USED PER YEAR.
I used to live in fear of my migraines simply because I would be in pain for days on end, unable to move, vomiting up nothing, delirious, and alone. Depending on whether or not I was married at the time, I would get so sick that at some point I would drive my idiot self to the ER and either call a friend or take a Taxi home, or my husband would drop me off on his way to work and pick me up on his way home, or whenever. The only way to treat migraines before the late 1980's was pain meds and anti-nausea drugs. Then came Ergotamines. They helped somewhat, but still left you looking like a mummy and acting stupid as a stone.
I took part in the drug tests for sumatriptan. I know I took the actual drug, because within 20 minutes this wave of relief swept over me like I'd never felt before. It was amazing. Life as I had known it was changed forever. Of course, it took years for it to hit the market, but once it did, life was good. In fact, a doctor once asked me if I had a choice to get rid of my lupus or my migraines which would I choose? Without skipping a beat I responded that I'd gladly keep the lupus. This astounded the doctor, as well as me, considering that the lupus was a deadly disease and migraines were not. But I didn't live in fear of lupus; I did of migraines. And now I am back to that way of life because someone - NOT MY DOCTOR - thinks I've had enough sumatriptan this year. In fact, they are so bent on this position that they are willing to pay a hospital to give me the shot rather than have me give it to myself.
So I must play this game until January 1, 2011, though it's no game. It's my quality of life. I offer up, as an example, today's adventure. A 4-day migraine that I almost got rid of last night, but I just didn't quite get it done. So off to my first ER visit in Florida. All is going well. I'm meditating to ease the pain until the shot comes - which as we all know can be hours - and it was... about two. So a nurse walks in with THREE, count 'em, THREE shots when I only needed one: SUMATRIPTAN. She's got the sumatriptan, a pain injection, and an anti-nausea. I appreciated the thought, but the sumatriptan gets rid of all of those immediately so there's no need for the pain and the anti-nausea shot at all. I'm not sure why they were ordered by the doctor, unless this was his first time treating a migraine. Lucky me.
OK, back to my adventure. The problem started when the anti-nausea medicine the nurse is about to give me was one I am allergic to. OOPS. So I point this out and all of a sudden EVERYTHING CHANGED. The atmosphere in the room went thick. Her attitude went from nurse-like to attorney-ish. I asked her if she checked my chart first; I never got a response to that. She kept interrupting me. OOOOOOOOOO... that is a huge pet peeve of mine. I HATE being interrupted. It's rude, and you can't possibly communicate when someone keeps interrupting you. HUGE PET PEEVE. Thus, she doesn't hear most of what I say, and I'm so out of it from the pain that I can't remember most of what she said. LOL - Although, it wasn't funny at the time. I remember she said something like, "I never came close to your skin with that shot." HUH? Who brought my skin into this? Then, "Well, I don't actually have the shot with me." HUH? Then how could you have come close to my skin anyway? This was the way the conversation, er, lecture went. Then suddenly she says she's going to "waste" these three shots and go talk to the doctor. WHAT? She's got my sumatriptan in her hands and she's going to "WASTE" it? I've been in pain for FOUR DAYS, she's a foot away from me with the one thing that will get me out of pain and she's going to "WASTE" it? And that's exactly what she did. She walked over to the red box where you put used needles, put all the meds into the box and walked out.
I lost it. I didn't stop crying for the next 2 1/2 hours. I don't know why, I just couldn't. I stood at the door to my ER room crying those huge, guttural cries, gasping for breath, asking people to send my nurse in and no one would. The entire staff ignored me. I've actually had dreams like this. Being a frequent patient, when others have complete control over whether you are in pain or out of pain it is a desperately helpless feeling. It's difficult to maintain any dignity at all.
I've been in pain with my lupus for over half my life. OK, life sucks. But if I don't have to be in pain I have vowed not to be. Someone else can play Saviour, I'm going to get out of pain. The technology exists for me to be free of pain on occasion and I will take advantage of that freedom whenever I can. More and more the powers that be (the FDA, the government, I don't know who) has decided that pain meds are dangerous. All the scientific data has proven that pain meds are only a danger to people who are not in pain. The percentage of people in pain that get addicted is actually very low, despite the high profile headlines we see. It is only those who aren't really in pain that get addicted. People in true pain don't want the meds when they don't need them because they would rather live a normal life. Pain meds fuck you up. We don't want to feel fucked up. We want to feel NORMAL; and pain meds make us feel normal when we are in pain.
With sumatriptan for migraines pain meds are not necessary. The sumatriptan actually treats the cause of the pain (inflammation of the blood vessels in the brain) and thus the pain is immediately dissipated. Fun, huh. BUT FIRST YOU HAVE TO GET THE SHOT.
My migraine is still present and accounted for, and I've had the maximum dosage I can have of sumatriptan for the next 24 hours. I'm screwed. I don't know what I'll do tomorrow, but for tonight it's just another night of pain with no way out.
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