Monday, October 26, 2009


Because it is not the FDA approved use of the medicine, I cannot say which doctor I saw today. He/she would like his/her identity protected. I was told this was an exception that was made.

Anyway, the doctor I saw today said that my urine Calcium done last May was low, so I will up my Calcium dose. However, since there may be something else causing this (like EDS-related absorption problems), the doctor finally agreed to prescribe Forteo!!!!! Forteo is a daily injection that you do yourself. It is the only medication proven to regrow bone. I have been prescribed a 6 month course. (The usual is 2 years.) This doctor has agreed that after 4 months of treatment, my bones should be showing improvement. So my DEXA has been pushed back to February 22, 2010.

Is this a good thing? In general, YES. I've been waiting for this medication for so long. And now I have it. Problem: Why did I have to wait so freaking long to get it? Another problem: This means that surgery is at least postponed another couple of months. I can't expect to have surgery before March at this point.

The medication itself seems pretty easy. It's made into a Pen. The medication has to be refrigerated. The pen measure the dose for you. You just insert the needle in an area that has at least 1 inch of fat (which is, evidently, my entire body!), and inject the medicine. The needle is so tiny, you really don't feel it going in! I mean it! I was a little disappointed. You know how much I love needles and blood! (Seriously, I love needles. Not sarcasm.) I took my first dose this afternoon, and fell into a very deep sleep. So I will be taking it at bedtime from now on. Another common side effect is dizziness, but I haven't noticed that. Other symptoms to look out for are muscle cramps and growing pains in the bones. So far, I think it's a great sedative for nighttime. No real complaints as of yet.

I just really wish I could have gotten this prescribed sooner, so I could be scheduling surgery for immediately after the holiday season. At least now, I can be sure that my DEXA test results will definitely improve next time, so I will be approved for surgery in the spring.

My main concern: I was expecting surgery in early January, so I didn't feel so bad stopping work 2 months before then. However, if I have 5 months to wait until surgery, I cannot be completely without income during that time. But how do you tell your piano students that you would like to try teaching for a few more months? I don't want them to think I'm messing around. I just need to make my life as useful as I can.

This doctor finally agreed to prescribe this medication, because my condition is finally pathetic enough to warrant drastic treatment (haha, like this medication is so drastic!) The thing is, my condition has been steadily worsening for a long time now. All information told me that this would happen. Why do the doctors have to WAIT until you hit rock bottom? Why won't they take you seriously until your condition is truly desperate? And why does New York insist on me becoming essentially bedridden before they'll perform surgery? We know I need the surgery. I am prepared for the challenges of recovery. But they're making me wait and wait and wait before they will do it.

Perhaps, I will write to my nurse at The Chiari Institute, and inform her that I have started Forteo. I can also inform her of how desperate my situation is. Maybe there could be some kind of lenience.

For tonight, I have a migraine that is reaching an 8, 8.5, so I will try to go to sleep. Of course, I wish I could exercise so I wouldn't have such a high body fat percentage. I hate being too sick to exercise. It drives me crazy. I'm one of those weirdos that actually enjoys going to the gym. It makes me feel good. (Not during, but after...I do have POTS, after all=exercise intolerance.) But I do miss getting a good workout and being proud to be able to keep my body healthy that way. I burn very few calories laying around all day. But my body doesn't want to allow me to be upright at all. Ahh...approaching a 9 on the pain scale. I guess I'll try to sleep.