Polyaromatic Languid Epilepsy
Everything continues to come up Milhouse, and with one exception, my skin is looking great. That one exception, though, is because they keep burning me at phototherapy. PLE, they call it, though the specifics of the acronym are currently escaping me. What it means is that I have angry red welts all over my arms and back from too much energy being directed at my skin. Too many Joules. So many Joules.
They'll pass, as they have before. This isn't the first time I've had this reaction, and it probably won't be the last. My nurses and doctor and I have been disagreeing on my light dosage for quite some time. The backstory is that when I first began phototherapy treatments, I cleared up completely over about three months. Completely. My skin was perfect. Then, as they increased the dosage (because that's the normal treatment path), I began to develop new-but-different patches, that tended to persist in the face of increasing exposure. The dose kept being increased and I kept staying the same, or getting worse.
Now, I'm not a doctor, but I do have that degree in biochemistry and a fairly solid grasp of the effects of different kinds of electromagnetic radiation, and what I inferred from this was that my body has a fairly low tolerance for UVA light. This inference was further backed up by my personal history of being two steps removed from albino. I am whiiiiiiiiite. Like, "the car has broken down, Tim, go stand out in the road so we can flash the high beams off of you to flag someone down," white. I always burn, I never tan. I've never been able to tan. The best I can do is some serious freckling, and that only if I've very carefully and gradually increased my exposure to sun over the summer. I always have sunscreen. I've gotten a serious sunburn almost every year of my life.
To me, then, the idea that I would have a very low tolerance for UVA being beamed at me in high concentration seems to follow in a rather straightforward manner. Not so my team of medical professionals. They keep increasing the dose, and we keep running into problems, i.e. - they burn me. This happens most frequently after I've missed a treatment or two, for whatever reason. In this case, because of final exams and xmas holidays, I hadn't been treated in a little over three weeks. When I returned, they resumed treatment at the levels I had been receiving prior to that time off. It did not go well. Two treatments, then PLE. I had a week off to heal, then we tried again. Two treatments, then PLE. I had two weeks off, and this time they did decrease my exposure a little bit, but again, two treatments and PLE.
I go back on Tuesday, probably still won't be receiving treatment, and I see my doc on Friday. I'm going to try to convince him that we will have to significantly reduce my dose until my body acclimatizes again.
They'll pass, as they have before. This isn't the first time I've had this reaction, and it probably won't be the last. My nurses and doctor and I have been disagreeing on my light dosage for quite some time. The backstory is that when I first began phototherapy treatments, I cleared up completely over about three months. Completely. My skin was perfect. Then, as they increased the dosage (because that's the normal treatment path), I began to develop new-but-different patches, that tended to persist in the face of increasing exposure. The dose kept being increased and I kept staying the same, or getting worse.
Now, I'm not a doctor, but I do have that degree in biochemistry and a fairly solid grasp of the effects of different kinds of electromagnetic radiation, and what I inferred from this was that my body has a fairly low tolerance for UVA light. This inference was further backed up by my personal history of being two steps removed from albino. I am whiiiiiiiiite. Like, "the car has broken down, Tim, go stand out in the road so we can flash the high beams off of you to flag someone down," white. I always burn, I never tan. I've never been able to tan. The best I can do is some serious freckling, and that only if I've very carefully and gradually increased my exposure to sun over the summer. I always have sunscreen. I've gotten a serious sunburn almost every year of my life.
To me, then, the idea that I would have a very low tolerance for UVA being beamed at me in high concentration seems to follow in a rather straightforward manner. Not so my team of medical professionals. They keep increasing the dose, and we keep running into problems, i.e. - they burn me. This happens most frequently after I've missed a treatment or two, for whatever reason. In this case, because of final exams and xmas holidays, I hadn't been treated in a little over three weeks. When I returned, they resumed treatment at the levels I had been receiving prior to that time off. It did not go well. Two treatments, then PLE. I had a week off to heal, then we tried again. Two treatments, then PLE. I had two weeks off, and this time they did decrease my exposure a little bit, but again, two treatments and PLE.
I go back on Tuesday, probably still won't be receiving treatment, and I see my doc on Friday. I'm going to try to convince him that we will have to significantly reduce my dose until my body acclimatizes again.
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