The vampire queen
My question, is sort of a two part question. I'm gonna backstory before I ask so maybe some people can relate to either lol
First, I have had photosensitivity since my early teens (I'm 27) over the years it has slowly progressed in its seriousness. So much so that friends & family lovingly (ha) refer to me as the vampire queen. I love the sun, but the sun most certainly doesn't love me. My fairness (I'm a Casper white "day walker" lol) doesn't help any. I do a lot of fishing on the lake, gardening, sports with my son, etc so the sun & I have had to come to terms. However well this arrangement has worked in the past, within the last two months, our agreement has been nullified. Normally I'm ok so long as I wear my hats, nuclear proof suntan lotion & long clothing. But...and it's a biggin...that isn't the case now. When it first started my doctor had thought I'd gotten bit by some funky spider. It started as an ulcer like sore & then my face blew up two days later. And when I say "blew up" I mean like a blimp. The swelling was so profuse & painful my face began to sag as if I'd suffered a stroke. I couldn't open my mouth to eat (it was on my lower cheek) & after a clear mersa test, my dr put me on two weeks iv vanco. I thought I was good, until a couple weeks later I got another sore. The rest haven't swelled like the first (I was in er, i really think it got infected there) but they have been painful & horrid looking. About my 5 or 6 one I started noticing they all lied below the shade of my ball cap (where the sun hits). Then at my son's baseball game, I took extra precaution. But as the game progressed I kept complaining to my husband that it felt like the sun was legitimately cooking me. An hour after the game (out of the sun) I was beyond lobster, and much to my alarm after using the restroom, I was even "burnt" through my jeans & long-sleeved shirt. I then took my mom out for early Mother's Day shopping, as time progressed my pain grew. My mom kept commenting about how red I was getting (I'd swapped to a tank top because it hurt too bad). By the time we'd finished shopping my mom grabbed me & startlingly pointed out those same blisters now covering my arms/shoulders/hands. By the time I got home I was in misery. Not from the familiar burn, but bone breaking joint pain. It was horrible. I went to bed after taking my pain medicine for my back (from my spine surgery, that I've hardly had to touch). But soon after going to bed I woke up to excruciating pain. Much to my alarm-my fingers, wrists, elbows were enormously swollen. To be completely honest, my hands looked like they belonged to the stay puff marshmallow man. I couldn't even bend my fingers, the pain was so intense I felt like I was going to croak. My husband wanted to take me to the hospital but I felt ridiculous going in for sun burn. I took another dose of my prescription pain pills (I normally have ever had to take one the few times I've had to, but can take two) and popped some naproxen even though I'm not suppose to because of being on blood thinners. I sat painfully in the tub for about two hours-the hot water burned the burn, but it eased the joint pain-what I couldn't bear. Eventually it eased up enough to sleep, but didn't really subside until the next day. The day following I began to get more lesions on my face & even my ears. Everything that was covered in red was covered in sores. Since then, I've sworn off the sun until evening but despite my hope, that isn't good enough either : ( long durations are still causing the joint pain & the sores. My first thought would be a sensitivity due to medication, but my drs have taken me off of everything except the blood thinners & my seizure medication-neither causing light sensitivity (I even called the pharmacy to double check).
So my first question is-has anyone experienced sudden light sensitivity?
And is there anything else that I can be doing?
I can't stand living like a nocturnal hermit, any advice is more than welcomed!