Thanks for asking. I've been still not able to deal with the sunlight and very nauseaus and tired. I'm trying desperately to lose weight and I've lost a few pounds because I simply cannot eat, that is not normal for me and when I do eat it goes right through me undigested. I was on a good anti-nausea medicine call zolfran (ondansetron) and it was helping some, but my insurance will only pay for twelve pills every 26 days which doesn't make sense to me. My ultrasound was unremarkable except for my liver, which didn't help matters, so I am no closer to finding out why this is happening. I requested some enzymes to help me digest my food, but my PCP wouldn't give them to me without some kind of diagnosis for this, so I see the gi guy and he will probably tell me that it's my liver getting worse and just take my money. I guess it could be the plaquenil, but with my risk for liver cancer and the possible prevention of cancer with plaquenil, I won't stop taking it. It does help. I'm really red and itchy but kidneys and liver normal they say. I've been too tired to pick up the tests myself to see what they really say. If the liver is elevated, they just tell me its normal because they can't do anything about
it. I think that's crappy because it makes me feel like an insane person when I'm sick like this. I guess an anti nausea drug is something I will have to add to my arsenal of pills and I really don't mind that. My repigmentation is going nowhere a little is coming back, but too little to make treatment worthwhile. I feel like depigmentation is not a good idea either, but I'm not sure. I would like to be all one color, but it will increase my sun sensitivity. And I found my little white chihuahua pup dead yesterday by the side of the road, she'd been missing for three days and we had been calling and searching everywhere and I was frantic. We found her because my bf saw a group of buzzards by the side of the road and by the time we got to her there wasn't much left but a skull and some paws, but it was her. I am very sad about
that, I didn't expect that I was so attached to her, she was always the one getting into trouble, kind of disobedient, but the house was really empty without her. My other dogs are sad as well.
On a better note, I'm trying to finish the last chapter of the first half of my third novel, not that it will ever be good enough to be published, but I don't care. Maybe someday I will bind them and give them to relatives as presents, I don't know. I'm sorry if I sound down, actually I'm doing surprisingly well, besides the nausea and gi stuff and have managed to swim a little every day and that is helping me. My son's MRI was declined by medicaid, so the docs are fighting to get it done. He is in a lot of pain but he's on toradol and that has been helping. He can only take it for five days and when that time is up I don't know what we will do. I tried to get the doc to test his ANA, but she wouldn't but she is testing his thyroid which is good. I'm so worried about
him. His heart is a nerve problem, his epilepsy is a nerve problem and now he's having neuropathy, sometimes very severe, you would think they might figure out that he may have something else wrong. He has my red face, though not as bad, and my dry bumpy skin. I do hope they manage to get the MRI, maybe he will have some arthritis and get to see a rheumy who can run the right tests, I also have a good pain mgmt doc that would run the proper tests for demyelinating diseases and ai diseases as well. My PCP only seems to test the same old stuff. She's good for calling in things and pain, but only sticks to her little section, fair enough.
I hope everyone here has been well. I'm running out of nausea medicine today and will have to go back on phenergen, which seems to make things worse, but it will have to do or some compazine maybe. I need the antihistamine part of the antinausea medicine as well, because it helps with the itching. I'm down to meat and green vegetables/ sometimes carrots, with a little low carb ice cream at night so I'm trying the gluten free. Nothing seems to be working.
Sorry this is so long, I need to cheer up. I hope things go well with your rheumy and glad you seem to be doing well.