My doctor and I have been trying to figure out what sort of injury would have started the CRPS in my hands before I was even fifteen. There weren’t a lot of choices, unlike the rest of my body, I haven’t injured my hands a whole lot, falls where I stuck my hands out to catch myself, but I haven’t jammed my fingers a whole lot as a kid and I have only broken my wrists, never my fingers or the bones in my hands. However, we were looking for something that might have caused damage to the nerves and were coming up with nothing.
However, yesterday, I made a phone call to a place in Arkansas that deals with neurological disorders, hoping they could help me. Unfortunately, since I know I’ve had it since I was fifteen, they didn’t think their treatments would work, I went untreated for too long. This is due to a combination of “I didn’t know something like this existed until I was 22” and “a string of false information and tests that didn’t show anything. As I was talking to them about what sort of injury might have triggered it, the woman I talked to asked if I had ever had a second degree burn on my hands.
Um, how about a 3rd degree? Check… Both thumbs…. because I have been convinced my entire life that I should be crafty, like able to make shit crafty, not sly and cunning. So when I was 12, I begged and begged and begged for a woodburner. My parents eventually relented. I had it less than six months before my clumsiness kicked in. I was trying to make a pattern deeper, so I was applying pressure, more than I was supposed to apply, and I knew it, but damn it, I wanted the pattern burned in deeper…. it slipped across the wood and entered my thumb on the left hand. It was very hot and cauterized the wound as it went all the way to bone – woodburners have a pointy tip for fine detail work. The most pain I have ever experienced in my life. By the time I was 15, I was having trouble with pain in my hands… because while I did it to the left thumb, about four weeks later, I did the exact same stupid thing to the right. It wasn’t as deep, but I still have a small scar from it. That’s the scar it left on the left thumb. I burned through nerves, muscle, tissue, the whole nine yards on the left. There was nothing the doctors could do to help it. They didn’t even stitch the wound closed because the cauterizing was so complete, they didn’t want to pull the scab off the interior of my thumb (the muscles in it). And within 3 years of that injury, I was being told I had an arthritic like condition in my hands…. that was more than likely RSD.
Unfortunately, since I went 22 years without treatment for RSD/CRPS, the place I talked to didn’t think they could help me and my insurance won’t pay for it. It would cost me around $80,000 out of pocket for something that they said had a less than 15% chance of helping… because it has started to attack my organs.
At least I understand a little better about the cause. My matching thumb scars are the start of my digestive problems, my eye sight problems, the pain in my hands every winter, now the pain in my hips and lower legs, because having CRPS for so long and having it go untreated causes it to spread and every injury I’ve sustained since then has more potential to become a massive source of pain.
So I can blame losing my ability to eat peppers and losing my ability to drive and the fact that sometimes when I sit down to pee, I have trouble getting up, on the fact that I was intent on learning to be crafty. Which is why we are now fitting our house with handicap handrails in all the bathrooms and we are going to have to spend a whole lot of money on either building me a shower in the utility room or getting me a handicap accessible bathtub, because there are times when I pick my leg up and it just doesn’t come up and I end up kicking the side of the bathtub, which really hurts, just FYI.