I have a disease called Tietze's Disease. I was diagnosed shortly after Christmas in 2008, though I've had it for a few years now. I am sure that, unless I've told you about it, you've never heard of Tietze's Disease before. It's a very rare disease, where your rib tissue (the costal cartilages) inflame, and prevent movement of the ribs. It's very commonly misdiagnosed, and sometimes masks tumors, heart attacks, heart dysfunctions, and lung problems. I can't really decide if I want to have the disease, or have something else.
Here's a basic run down: Because of my this, my ribs don't move. This means that I can't really exercise at a hard cardio pace. I rock climb, yes, but that doesn't get your heart pumping like running. I used to be a swimmer, and had to stop, because my limbs were getting so weak that I couldn't walk after races. I used to run around a lot, but now I'd be lucky to run a hundred meters. Basically, if my heart starts pumping hard, it needs more oxygen, and because of the limits on my lungs, I can't supply it. Because of that, I get oxygen deprived and eventually pass out. I've never actually ever passed out before, because I always know when to stop. When this first showed up however, I got pretty close a few times.
I've been through every test on the planet for this disease. The pain of it is often said to be the same as having a heart attack... constantly. Because of the tightness of my ribs, the tissue pulled on my spine, and my spine now not only does a small S curve, but it also twists to the left about ten to fifteen degrees. This, of course, gives me extreme, chronic back pain. My stomach has also been pushed around by my tissue, and is located a little closer to the front of me than it should be. The result? I can move the entrance of my stomach around with my hand. Odd? You bet. When I didn't know this, I would sit in weird positions, and suddenly feel sick after a few moments. We thought I had a bunch of different problems. We never knew that my back, my exercise limitations, and my stomach were all from the same thing.
The disease started manifesting around age thirteen. I was always an outrageously active child, and I started realizing that I could do less and less as the months would go on. I attributed it to growing up, and just thought that I was losing some of my energy. The summer of 2005, I was 14, and swimming a 100 meter major race against our top competitor in the league. They were killing us, so they had put me in with the 15 and over swimmers, because they knew I was possibly fast enough to win it. We needed the win. I swam as fast as I could, and at the end of my third lap, I started to feel dizzy. I was in first, so I kept pushing. Suddenly, it hit me like a freight train. I slowed down, my arms went weak, and I started gasping for breath. The pain in my chest was amazing. The girl in second was gaining on me fast, and I pulled the last of my adrenaline to finish the race. I think I finished second, but I don't really remember. I got to the wall, and hung on, gasping for breath. They needed to start the next race, so I used the last of my strength to pull myself out of the pool. I got up, walked three steps, and felt my legs giving out. I tried to get to the fence behind the starting blocks, to catch myself, but I only succeeded in falling between their storage shed and the fence, where no one could see me. I sat there for a good fifteen minutes, mainly because I couldn't move. I wasn't all that concerned, I just thought I had really used myself up in the race. After my heart slowed, and I stopped feeling as dizzy, I tested out walking and found that I could if I moved slow. I made it back to my parents, and told them what happened, mainly for selfish reasons. I didn't want to have to go to practice the next day. My mother immediately made a doctor appointment, and told me I wasn't allowed to swim anymore, unless they were relays and short distances.
After this, the doctors become a blur to me. I remember going to my Pediatrician and having him tell me to start taking an over the counter medicine, a pill, that started with a P. I forget what it was. Needless to say, it didn't work, so I stopped taking it. After that, I was sent to the Asthma doctors. They tested my lung functions, took x-rays, and did breathing tests. Everything came back normal, but they put me on an Albuterol inhaler anyway. After my mother and I found out that I am one of the few people that get high off of Albuterol, they did more tests, which were still normal, and put me on a Zopenex inhaler. That still did nothing. After that, I was sent to the Cardiologist. They thought I had a bad heart. I had EKGs, Stress tests, Ultrasounds... everything you can think of. They were considering putting me on a constant heart monitoring machine, something that I'd have to wear to check if I was having miniature heart attacks during exercise. My Cardiologist told me that before we started me on equipment, he wanted me to see a special physical therapist. I thought he was stupid, but nonetheless agreed. By this time, I was seventeen, and had had a year and a half of constant medical tests. I was apathetic, and mostly willing to do anything. We went to the Physical Therapist in Hershey, Pennsylvania, and she spent 15 minutes with me, and told me I had Tietze's. I was amazed that I finally had an answer, and didn't necessarily believe her at first. After my second visit, I was convinced, mainly because everything that she did worked.
I saw her a few times more, and then stopped, mainly because gas went over four dollars a gallon, and it was over an hour drive. We didn't have the money to keep going. She told me I should grow out of it, and it should stop soon, which I hoped for. It didn't happen. When I started college a year ago, I called Hershey Medical again, since she was on Medical leave for the entire summer. Of course, she was still on limited hours, and they couldn't accommodate my college schedule. I was out of luck.
Since then, I've tried accupuncture, and a general Therapist. While my general Therapist, which I just finished up with last week, was a nice guy, he really had no clue how to treat my disease. So once again, I'll have to hunt down someone who knows the special kind of therapy that is needed for my disease. Hopefully I'll be able to manage it myself, without needing one for a while. That would be nice.
Because of my disease, I sound like rice crispies. I can put my shoulders back, and my spine pops. Sometimes I can reach for a book, and my rib will crack. I swear, I'm the only person that I know that can crack their ribcage. It sounds like little taps. I went to get out of my car this morning, and my back popped three times just lifting up my bag. It makes me laugh that I sound like a cereal.
One of the interesting things that this has given me is a horribly high pain tolerance level. I wake up with scratches and have no idea how they got there. I don't really feel my back pain that much anymore, unless I sleep badly. I get cuts and they don't really hurt. I woke up Monday morning with a big chunk of skin missing from my the knuckle of my pinky, and I have no idea how it got there. For some things, it's nice not to feel that much pain. My back feels like a rock. Giving me a massage is like trying to move the earth. My physical therapist had to use all of his body weight at first, just so I could feel it. For other times, it sucks. I don't necessarily like waking up looking like I've been beaten with forks in my sleep. Sometimes the random scratches get old.
Will I grow out of it? God I hope so. Most cases of Tietze's don't last longer than six months. Mine has lasted four or five years now. I know someone who is going on twenty years with the disease now. I hope that won't be me. Soon, I hope, I'll be normal again. That would be nice. Until then, if I have a heart attack, I'm screwed, since that's what normal is to me. I've realized that a lot of people with diseases play this game, so if you're perfectly health, enjoy it, and we all hate you. When it comes down to it, I can't change what I have, and I'll deal with it fine. I look normal, I think normally, I'm okay. I won't let it limit me. So if you're ever looking for me, it's best to look to the cliffs...
Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it.
- Michael Jordan
Live as if you were to die tomorrow. Learn as if you were to live forever.