I had an amazing nurse practitioner last night at the ER. My visit went surprisingly well. And she was very well informed about CRPS. She even told me, as much as I hurt yesterday, it was going to be much worse today and probably tomorrow to.
However, the ER sent home an information sheet on CRPS about how to avoid flare ups, like I had yesterday and it actually says “avoid accidents.” Well no shit. Dear medical professionals: We do not get CRPS because we are great at avoiding accidents. I talk to a woman constantly that has it – she has been a godsend – she got it from spraining her ankle running through a field. Another woman I love to talk to got it from breaking her wrist when she slipped in her bathroom because the rug she thought she was stepping out on had moved six or seven inches and she missed it by just that much.
I got mine because I was using a wood burner and with the extra pressure I was putting on it, I was learning to do letters, it slipped and went into my thumb, but my ER file from the time I was five is MASSIVE. I have done every stupid thing imaginable. I once stood up on a teeter totter because my young naive ass believed the other person when they said they wouldn’t jump off. Low and behold they jumped off and I broke my wrist when it slammed into the handle bar as I fell. I can’t tell you the number of times I have been asked privately by a nurse if I needed child protective services to visit my house because the ER thought I was being abused.
It was so bad, my mom was embarrassed to take me to the ER. She always did, but she always did it with a grimace and she made me explain what stupid thing I had done to land me there. Halloween 1989 I was trick or treating and walked up to knock on some person’s door to get candy and managed to trip over grass… bad enough that it sprained my ankle. Yep, I sprained my ankle tripping over grass.
I am not graceful. I have never been graceful. I am a disaster wrapped in skin. When I was five, I was sitting on a paint can on our porch and scooted backwards. The pain can fell on my collar bone and chipped it. It hurt, but no big deal. It healed. No problems. When I was 23, I fell under my own car because there was a slight sheen of ice on the asphalt. I grabbed the door to stop my slide and did so much damage to my shoulder they had to surgically repair it. When I went in for my follow up, they made me watch the video because they inexplicably found a bone chip in my shoulder but couldn’t figure out where it came from. Upon inspecting my X Rays, it was the same size and shape as the remodeled chip out of my collar bone. It had just been floating around for 18 years.
When I first started seeing my pain management doctor, he had some questions for me as well. I had done a full body MRI as well as full body X Rays and he found a 6 inch remodeled fracture of my femur and wanted to know how I got it. I have no idea. He says it had to have hurt and it’s usually the result of high impact injury, like being hit by a car or kicked by a horse. I have done neither of those things and I have really dense bones, which makes that large femur fracture even more mysterious. The only thing I can think is when I was 5 – these were the days before carseats and booster seats were mandatory, along with seat belts – I opened the door of the car while my mom was driving through a parking lot and I rolled out. I remember the incident and for some reason I thought she was stopping to let me out at the door. I don’t know why I thought this, it was not something she did… but I did think that. I still remember thinking that. I also remember hitting the curb as I rolled out the car. But she was probably doing ten miles per hour, so is that high impact enough to fracture my femur? I don’t know. I know it hurt then and resulted in us going to the ER instead of grocery shopping. It didn’t cleaning break the femur, just put a long crack in it, essentially… but other than that incident, I can’t think of another that would have made me crack my femur lengthwise… so his guess was as good as mine on that. As for the fact that it probably hurt… It probably did. But I hurt myself so often as a kid, I might not have noticed. I had a lot of days where I limped because I had twisted my knee or sprained an ankle. Hell, I tore up my knees so bad by the time I was 14 that they sorta randomly popped out of socket anytime I turned them the wrong direction. That is painful by the way, but putting it back hurts worse.
So, thanks for the information on CRPS, but if I could avoid accidents, I probably wouldn’t have this disorder. And let’s discuss the very nature of accidents… they are unintentional situations that result in injury. Basically, they are mostly unavoidable by definition. If you intentionally run your car into a tree, that is not an accident. If your dumbass opens the car door and you fall out, that is still an accident, because when you opened the door, you weren’t thinking, oh I might fall out… that never went through my mind when I fell out of the car. I thought, I’ll hit the ground running. I got lucky that my mom didn’t run over me or that I didn’t crack my head open on the curb or the pavement. Okay, I got lost there for a moment. So avoid accidents. Sure. Good tip.
It’s made me think that maybe I do need to write a book about CRPS from a non-medical standpoint and try to erase the whole “avoid accidents” shit that gets handed out to CRPS patients. That is about the most worthless piece of advice I have gotten in the last 6 months. Sometimes, I think doctors and other medical professionals do not understand because they don’t have to experience these things, just learn about them in books and by talking to patients and since every patient is different… The two ladies I talk to the most with confirmed CRPS have different experiences than me. And doctors with different understandings of how this works. Because sadly a doctor can treat a hundred people with CRPS and while there are some definite similarities there are definitely some differences. The nurse that was working my case last night asked if there was anything else he could do for me before I left. I asked him for the cure to stupid days. He smiled and joked that if they found that cure, he’d have to find a different line of work because he likes working the ER and he only sees people on stupid days or fever days. We also discussed the fact that he needed to start a clothing line for people who are not perfectly portioned all the way down. He had to attach some lidocaine patches to me, one in a very intimate spot, the very inside of my thigh near the hip joint, and I apologized profusely because I cannot buy underwear that fits my waist and goes around my swollen right thigh and hip without cutting into the skin really bad.
So, I think while I work on taking my break to find my brain on Lyrica, I’m going to go ahead and work on a nonfiction book about CRPS. I think the world needs one from a layman’s point of view. I have looked and not found any worth reading. For starters, it’s going to need humor and the two I have read were very dry and boring as a result. But let’s be honest, it needs chapters like “So I had a stupid day”