Thursday, April 16, 2009


Well, I've had a pretty good couple of days (relatively speaking, of course). I still have times of bad nausea that makes me want to do nothing but lie down. It also messes up my appetite. I feel like I have to force-feed myself sometimes...especially for my mid-day meal. I've been really limited in what foods I can handle. However, with the help of Provigil, I have the energy and motivation to go to work and get through my day most of the time. One of these days, though, I'm just going to want a nap.

Today, I went to the dentist (always a challenge), and I finally got bonding done on my two tiny teeth, making them more even. I've been wearing retainers for 3 years preparing for this, so it's pretty exciting. It took a little over an hour, which made my left arm go totally numb and my head practically explode (dental work is really hard on a chiari head, weak neck, and EDS gums). But in the end, I'm really happy with the result. This was a cosmetic, not medical procedure. I feel good about the result, even if some people don't think it was needed.

Also, I'm getting so nervous for my next bone scan. I've talked to a few people for whom the Vitamin D/calcium treatment has not helped at all. It is thought that this may be due to EDS causing absorption issues. One woman is on four times the amount of Vitamin D that I'm taking, and she still has poor bone density and now a broken hip. So I'm just really scared that my bones will not be ready for surgery. I don't know how much longer I can be patient for this surgery.

It's officially seven years since my diagnosis. Of course, my symptoms developed in the years before diagnosis, starting with puberty, and worsening with minor traumas along the way. But seven years ago, I was a senior in high school (2002) and was told that I would need brain surgery. Ever since then, my life went downhill. Nothing has been what I thought it would be. My first surgery was so scary, but it went well. I believe I had complete relief from my headache for about one month after the surgery. That is the only time I can remember feeling so lightweight and free since early childhood. After that, I went off to college, and started getting worse right away. And then I just kept getting worse. I struggled through school, was diagnosed with POTS, and finally went to visit The Chiari Institute. They did my cranio-cervical fusion in 2003, which I never really recovered from. I finished school and started working, but I still needed to spend the majority of my time resting. The vast majority of my time was absolutely miserable, and some of it was completely agonizing. Finally, I went back the to The Chiari Institute in 2008, and they did my tethered cord surgery. It seems that I needed that surgery to prevent a worsening of lower-body symptoms, but it did nothing to improve my overall health. But they did find out that my skull was settling again. So now, I continue to wait, for who knows how long. It would be really ideal to have my fusion revision at the beginning of this summer. That's been my plan since last June. And I've been trying to get treatment for osteopenia since then. However, it took 8 months for me to find any endocrinologist willing to treat me. Once I finally found one, she was not willing to start me on actual medication, only vitamins and supplements. So I have no idea when I can have this next (and hopefully last) surgery.

Until surgery, my condition can only deteriorate. Nothing can get better without further skull extraction. So all I can do is wait and hope, and try to keep living my life. I just don't know how to keep waiting. How can I keep being patient, when I've been waiting for so so long? It just hurts so much to know that life is passing me by, and I'm not really there to enjoy it most of the time. I'm 25 now, and I feel like I've missed out on most of life since high school. Actually, I missed out on a lot during high school too. I missed school a lot, and spent a lot of time seeking treatment for an unknown condition. Now, I'm usually curled up on the couch or in bed...drugged up or completely out of it. I can put on a fake smile when I need to, and pretend that my body is not failing me...pretend that I live a normal life. But nothing about the way I live is normal anymore... More on this later.