Still hiding in the dark

Still unable to tolerate sun through the windows, have blankets over them.  The sun seems particularly bad this year, as if our atmosphere isn't screening out enough rays or something.  I've been nauseous for days and I'm afraid my liver is really bad, I'm having alot of pain there.  When I went off synthroid for three weeks I gained ten pounds and I'm already overweight, so it put me in my liver danger zone.  I'm struggling to lose it quickly, but nothing is working.  I think the protopic and steroid ointments are making this worse.  I'm starting to repigment, kind of quickly, but losing in new areas. I guess I'm going to have to call the doc and insist they do some liver tests.  I may end up going to the ER if it keeps up.  I'm kind of scared about it.  I'm so tired and nauseaus. 

I made an appt with the hepatologist at that research center again for a checkup. He said yearly, so it's been longer. The thought of driving there in the sun is daunting, but its early in the morning. Maybe it will rain that day, I hope so.

Thanks Leta, it is a little bit strange to adjust to, especially since I was always a big outdoors person. I feel like a vampire. I'll have to check into the Porphyria and get some info, esp. since it has to do with the liver. I'm rereading Sarte's Nausea and I think he must have had it. He talks alot about not liking sunlight and feeling sick from it alot and feeling better in the daytime. He writes stuff like "when the sun is shining, the best thing to do is to go to bed" and "When it is dark, the objects and I will come out of limbo." It's strangely comforting.

Thanks Leta and Emmi. I read the stuff and it sounds like I probably have it. It would make sense. I'm a little scared and am going to ER for pain andnausea in the morning and will see some doc on Monday if I can to get some testing. I think finally, I have some clue about whats wrong. Today I got dark freckled patches on my cheeks near my eyes. Mentally, I'mnot so good. How do you go out during the day? How can you effectively block out the light from your face? Does sunscreen work for this? Are some of the hoodies big enough to cast a good shadow over your face, or do you have to wear some kind of big hat. Id prefer a dark veil or skymask and dark sunglasses, but I'd probably get taken away. Sad isn't it?

I am in the same boat. I say I live in my "bat cave". When I coffee with my friends, I always want to pull down the shades in the coffee shop, and usually wear a hat. Still, I always end up with a red face. It's really the pits.
Nan

Thanks Leta and Nan--
I'm actually doing a little better, perhaps from staying in the dark for a while. I was able to get to the store to get two hats and even was able to spend a few hours outside on Sunday, fishing and swimming in the river. But then my skin got real burnt and I'm back inside for a while. It seems like it comes and goes, like a lupus flare, like you get too much sun and then its awful and you go in the dark and things get better and you are able to tolerate the sun better. The plaq didn't cause a noticeable change when I started taking it, I've been on it for about nine months now, I think. It makes me feel a lot better. I quit taking my soma at night and this seemed to help strangely enough. My liver pain went away and I was able to get out that one day. I'm supposed to get 15 a day in the sun for my vitiligo tx, so I do that. Maybe the soma just overloaded my liver to the point that it made the sun sensitivity more noticeable, I don't know. I just have to get tested when I can afford it.

Thanks Leta, I went to the site last time and I saw the list but didn't think to look up the soma on it. Thanks again for helping me. I looked at some of the stuff, most of my regulars are ok. I will definitely push my rheumie to test me and if he won't, I will beg the hepatologist to. What is really the best definitive test. Bloodwork? or 24 urine? It would be good to know what the best test is so I can get the right test and not just some halfway inconclusive waste of money thing. I also have a hx of hemochromatosis and probably still have high ferritin, they stopped checking it because it was always high. Heaven forbid they treat it. Liver pain. Nausea and hep like feeling, severe fatigue, burning of skin when out in sun, even if the skin is covered sometimes. Loss of pigment and hyperpigmented spots, Addisons like hyperpigmentation, kidney pain, chronic bladder pain, no rash, but some acne like stuff forms around my mouth that is like pimples with no heads that turn into scabs and sometimes scar. Red face and difficultie cooling down and slowing heart rate, dizziness and loss of vision in a way, like I lose color and focus and frequently have to blink and blink and try to get refocused. I haven't got an itchy rash, but the pix of some of the milder skin stuff looks like areas of my vitiligo dotted with hyperpigmentation. Also, these areas get cold and blue sometimes, as if they are dying or breaking down and I have neuropathy in these areas. The liver pain and fatigue was most noticeable and the beginning of my sun problems corresponds with the second month of taking the somas every night, which is when a drug usually builds up in my system. I got wood blinds on sale at home depot for 21.00 a piece, no matter the size, so I got a real good deal and I put them up where I could and they block the light well and look good. I've also had an increase in joint pain bad in big toe and thumbs and neck stiff and almost a fever feeling and headache, but temp is low by one or two degrees--probably due to my thyroid. And, of course, the nausea and some diarrhea/gi pain. I read that it is very common after hepc infection and hemochromatosis, both of which I had, and involves fatty liver and I have severe fatty liver, every cell is as fatty as it can be, and so this would be a no brainer to test for. I guess they expected me to bring up sun sensitivity or thought my skin symptoms looked too mild. Is it important to get tested while the porphyria is flaring? If so, I need to go ASAP because it is getting better.

Thanks leta, calling the doc tomorrow to set up appt and request testing. I hope I didn't wait too long. I feel like the problem is going away, I feel well enough to drive myself to the doc in the bright sun. Just my luck. Oh well, if I am sick, hopefully it will show up in blood and urine. Thank you so much for your help. I do think this is the answer to my bizarre health problems, everything fits.