Monday, September 20, 2010

Where Did She Go? Name That Cootie!

I know it's been a long time since my last post. I've been full of Good Intentions, which somehow didn't translate to Action in the last few months. The problems with pain include never really knowing when you're going to be able to do simple tasks such as writing an email, or even folding a napkin. Just spent months trying to figure out when my hands would co-operate. Sometimes I thought I was close, but didn't quite get past the first paragraph.

Pain has a tendency to lead to depression. You feel so beaten down that the body is not going to change its habit of spasm, ache, sharp ache, exhaustion. It becomes a cycle of "will it ever end?". If you're like me then you feel humiliated for not being able to walk to a mailbox, or even get to the bathroom because your legs won't approve of the motion. The last few months led me on a new adventure in the game that has become my body- Name That Cootie!
Every few months I get migraines. They usually come with my menstrual cycle, and tend to last about 4 hours. I know they will be coming because my right eye will suddenly look very sleepy, the lid will droop, and I may at times see the classical glowing aura that is well known in the world of migraines.

Doctors have discounted this as merely a "woman thing", and only one has ever taken them seriously enough to give me a prescription, Sumatriptan, which helps nip the head spirals in the proverbial bud. My body decided to add a new trick to the repertoire and I started feeling the eye droops, and then my right cheek would feel absolutely nothing. No pins and needles of numbness, nor would there be any muscle response if I smiled or did any other facial expression. The headaches didn't follow so something new was happening.

Once or twice a year, I get a thing called Cyclical Vomiting Syndrome, (CVS), which started around the same time I got my first gall bladder attack about 7 years ago. This also seems to be a precursor to any migraine pain, and often rides along with the sharp ache behind my eyes and ears. I get up, my stomach feels as if I am on a Coney Island Carney ride, and if I make it to the restroom in time, I redecorate the toilet in early American ick. It's a charming way to woo my husband back to our honey moon days. As a child, up until my early 20's, I had IBS, and it ran pretty much the same way as this. No matter what I eat, drink, or think about, the bathroom must be nearby. The bouts may last a few hours, or a few days.

After visiting the doctor for an annual check up, as required by the insurance companies who wonder why they don't have enough co-pays coming up on their accounting, I got to chat with her about the face drooping. She sent me to a neurologist. The gentlemen, Dr. Gregory Baker, is certainly one of the very rare people who listened to my symptoms and history, without adding his own "Oh that's part of getting older" to the statements. I was poked, sent to radiologists, and given blood exams. It turns out the droopy eye and all of the facial issues is part of yet one more auto-immune disorder, called Myasthenia Gravis.

Dr. Baker warned me that the cure isn't so much a cure but a treatment. There isn't a cure for auto-immune issues. Ehlers-Danlos, Hashimotos, Myasthenia Gravis- I sound like I should be some sort of hospital side-show participant. Add constant ethmoidal sinus infections, and now jaw pain, and you start to wonder if there isn't just one disorder that checklists all of my issues.

During all of this, I've stepped back from doing Stand-Up comedy. The pain makes it difficult to drive to clubs, but the emotional drain of having to handle making other people happy can be a bit overwhelming. In place, I have actively worked on my comic book art, hoping this outlet allows my humor and creativity to escape, as the comedy had in the past. I don't get timed, I set my deadlines, and the best part is getting feedback I can delete if I dislike it. Deleting people in clubs means possibly no audience whatsoever. Doesn't quite work right. It would be a much better gift around holidays to harness that power, wouldn't it? That's not to say I'm not still writing comedy. There's still shows I'll be doing, relating to music, comedy, and stand-up. I just don't know where or when, as of yet.

But, since I'm drawing and writing more than I have in the past years since teaching at a University, or even whilst in the film industry, my right hand and fingers are starting to fight more against me. That's part of the reason my blogging has slacked off. There are weeks of feeling as if my hands are baseball mitts, or they have razors hidden within the knuckles. My wedding ring gets so tight on my finger it ends up being placed nearby, just so I can feel my hand again. Then, the real fun of having the sinus attacks get so bad I was put back on steroids really destroyed me.

I have often commented on the evil torture of medicine known as Prednisone. It causes me to gain not just a few pounds but tens of pounds, (stones if you are from the UK). Inflammation is supposed to reduce with the steroid, but the weight gain just created more joint pain which in turn, added to the inflammation. It doesn't make sense to me, either. It's a cheap option for doctors to give us when our lungs or sinuses are misbehaving. (A full 30 day supply runs about $5, no insurance required.) I was placed on this lovely pill for only one week, and it's now been three months of feeling as if I can't use my right leg or left foot. Some overweight people think I'm "medium sized", but for someone who was small for nearly 20 years, being a medium is definitely a drastic change for the worse. I can't fathom what it's doing to my joints, but I'm sure that the bones are rubbing together twice as badly as they had in the past.

Myasthenia Gravis, Hashimotos, Ehlers-Danlos, and chronic sinus issues- compiled with the vomit attacks makes for a pretty unhappy gimpy rat trainer. But, anyone who meets me will tell you, complaining about it all of the time is nothing less than boring, and since it doesn't change the situation, I don't do it often, if ever. Rather than pout and sing out "poor me" songs, I just focus on ideas for the comics. That is also why I hadn't written a blog in so long. Talking about the medical issues isn't always healthy for me when I can't get through a day because of pain. Talking about it makes it real. Reality isn't always a happy place, and keeping my body out of my mind is one of the few ways I can cope with having all of these problems.

But, the blog is called My Doctor Is Killing Me. It's for all of use who have spent hours, days, months, years and even decades banging our heads trying to get to a state of "Okay". It doesn't have to be a state of health- just a state of feeling that something is under control somehow. So many doctors are spending time with me, letting me educate them in my disorders, that it seems like I will never find the doctor who takes time to look at the big picture, the pain/weight diaries, the medication history, and even the illnesses of my past in such a way so s/he discovers what can be done to stop ALL of it, or at least ease the situation. Being handed yet one more pain killer or one more steroid just seems to be the merry-go-round of medicine I've been dealt.

In the last few weeks, I've begun reaching out to specialists via email. Some are gerontologists, others are pediatricians, some are endo's, whilst others are internal medicine experts. I'm writing to them to see if the years of illness aren't just all part of one major diagnosis. Perhaps I will hear from one who says, "HEY! Gimpy Rat Training Girl- this is a case of Gimpyrattraining Girl Syndrome! I know just the cure!" like they do on the Health Chanel shows. No geneticist has responded up to this point. If I keep trying maybe I'll find someone who can tell me what test I really should have, or what treatment is better than dosing with opiates. I'm tired of pain meds. I'm tired from pain meds. And, I'd love to have a regular bathroom day- not one wondering if there will be a chocolate syrup run, or a hopeful for a frog-sized-fart one.

I can't have had perimenopause from the time I was 11. I can't have just randomly gained 80 lbs because I had an extra piece of french toast on Sundays. I can't have constipation for weeks on end after taking the same medications for years that leave me with the opposite problems on alternating weeks. I can't be on the correct dosages of Synthroid if my hair still falls out, nails still crack, and body temperature is still 96 to 97 tops. If I have Ehlers-Danlos, why do I have symptoms of joints that seem to mirror MS or Lupus? Why can't anyone tie all of this together as one package with a pretty purple ribbon, and find a magic pill to make me at least LOOK like I did back when I was walking up right. I can't fathom why my doctors don't look at patterns, big pictures, and complete history before coming up with "oh you have a sinus infection" (again, for the 13 time since May). What walks up stairs alone or in pairs and makes a slinkity sound? Why is "Islands in the Stream" in my head now? There are some important questions to ponder.

In the meantime, I'm back at writing and will continue to update with reasons and questions that seek the answers to why My Doctor is Killing Me. It's not just about me, it's about all of us who have wondered if managed care, health insurance companies, and our own doctors aren't hearing us or getting the big picture of our health histories. We want to not just know why, we want to know what can we do to make our lives better. We may be reduced to an unhealthy body for the rest of our lives, but we shouldn't have to feel as if this was an inconvenience to those whom we pay to care for us. We need to have our doctors work at our symptoms and our overall picture of health. We need to be heard. We need to be heard. And, we need to be heard completely.