It's been a year and a half now since I've posted an update to the condition I have. For those of you that haven't read my first blog entry about this, I have a disease called Tietze's Disease. As I said in the last entry, I was diagnosed shortly after Christmas in early 2008, though I developed it many years before. Tietze's disease is a very rare disease. In basics, everyone has an underlying tissue, called the myofascial tissue. Think of it like a giant net around your body. For most, this stretches and moves, however, for Tietze sufferers, the tissue tightens up and doesn't stretch much. It's extremely rare but very commonly misdiagnosed, and sometimes masks tumors, heart attacks, heart dysfunctions, and lung problems.
As I said before: because of this, my rib cage doesn't move much, which limits the oxygen I take in. But I know a lot more about it now then I did before. For example, my skin in general doesn't move as much as normal people's. When you touch the skin on your arm right now, it should have an inch or two of give to move around. Mine skin moves maybe a half an inch. My muscles don't develop as fast as others. It takes me a few months to get strong enough to climb a grade above, when almost all other climbers can train for a few weeks. If you press hard and run your fingers up my shins or forearms, you can feel tight tissue balled up, like small hills. Same along my breast bone. You can't see them, but you can feel it. They've been causing random pains throughout my arms, legs, and chest.
The biggest new symptom, however, is my memory. I forget enormous amounts of information. I can't remember valentines day last year. I can't remember my schedule from last semester, even though it was only two months ago. I can't remember almost all of my junior and sophomore years of high school, including the two year relationship I had with my first boyfriend. Sometimes, I'll even forget what my best friends or family looks like. My memory problem has been a recent issue, that started very slowly just before the summer and spiked the past six months. Of course, this coincided with when I got back from Tahoe and became active on IRC again. Many people have messaged me to talk about old stories, past events, or just say hi, and I've had to tell many of them that I didn't know what they were talking about (and in a few cases, that I didn't even remember who they were). I'm really very sorry for this, and I'm hoping you guys will stay patient with me while I try to get this issue under control or see where it goes. It seems to ebb and flow: just when I think it's getting better, it turns around on me. It's created an entirely new obstacle with school.
These issues are not ones that are thought to be commonly associated with Tietze's. If you read most definitions of the disease, it's mainly thought to only affect a certain part of your ribcage joints. Because of this, I've reached a new thought...
I'm pretty sure I've been misdiagnosed.
When I was diagnosed with Tietze's, it was by a physical therapist in her 60's at Hershey Medical Center. I had been there for fifteen minutes. It seemed like a miracle at the time, but now I wonder if it was just an easy label. She spoke of seeing many people with this problem, but most research says there's only been slightly over a hundred correct diagnoses of the disease in the past fifty years. I'm all set to believe that number is very low, but I can't believe that an extremely rare disease blossomed overnight. Also, I've seen my medical charts. Tietze's isn't listed on it. Even though most doctors in the United States have no idea what Tietze's disease is, I would think it would at least be listed on my medical charts if I was diagnosed. I always have to remind the doctors that I see that I have it. Being misdiagnosed holds a different set of worries for me though: One, do I have something worse? And two, I'm going to have to go through all of those horrid tests again if I want to challenge this. With it taking two years of neverending doctors just to get a Tietze's diagnosis, I'm not thrilled about that idea.
I mentioned in the last entry about this that most people grow out of Tietze's, and a handful don't. It's supposed to be a short duration syndrome, that clears up after six months to a few years. With this going on six years now and only getting worse, I think it's safe to say that I won't be growing out of it. Unfortunately, there's still no treatment, and the research on it is still non-existent. Nevertheless, I still know that it could be worse. I'm alive, I'm functional, and it doesn't prevent me from doing things I love, it only gives me more obstacles to work through. Is it a little intimidating and worrisome? Yeah, it is. But it's pointless to think negatively about it when I can't change it.
I made a major achievement this summer. I climbed a 80 foot, 5.10a route (up there in the hardness level) at 6,000 feet. My house at home is at 200 feet. It was a huge event for me, and I didn't even realize the grade of what I had done until I got home. We had thought the climb was much easier. It was longer and harder than anything I'd ever climbed. So no matter what, nothing's holding me back.
“When you reach the top, keep climbing.”
The Left Seam - 5.10a