For a few months now there has been a question as to whether or not my Humira dosage is adequate to keep Behcet’s at bay. I’ve had minor symptoms within 8-10 days of my dose, meaning I’m beginning to flare before I reach day 14, which is my dosing schedule (every two weeks.) My rheumatologist and I had discussed increasing to weekly dosing, but she was concerned because, at that time, my liver function tests were showing some decreased function. Having had a liver that functioned better than average for years, it was scary to find out it was functioning worse than the average liver.
The last six weeks have been hectic, really the last two months. My doctors and I were convinced that the mold had a lot to do with my not feeling well, and to an extent we were correct, I have noticed I’m feeling a lot better when it comes to a lot of things, now that I’ve moved away from that hovel…but I’m still having symptoms. I can eat, but only when I’m at home in case my stomach rebels. My appetite is purely dependent on physical activity. If I do not exert myself, I won’t be hungry, which has meant I’m not gaining weight, and still occasionally find myself losing it. Why? Say I go a few days without over-exerting myself until I get an appetite, I may not be hungry enough to eat the calories needed to maintain weight. I then lose weight. Later I’ll have a few exertion days, and eat, but only enough to account for the calories burned, and sometimes not even enough to account for those calories, meaning I either maintain, or again, lose weight.
Today was the worst, well last night into today. (The 7th into the 8th since I’m writing this after midnight I’ll clarify.) I crashed at “the guy’s” place, and I knew I shouldn’t have stayed over. I needed to grab a medication from him, and when he asked if I could stay I agreed mostly because I knew I wasn’t going to see him for a week or so, and also because I sleep better when I’m curled up next to him. Only this time, I didn’t. I was nauseas, and dizzy, and I knew that I was going to be too anxious to sleep well because I was afraid I might throw up while I was at his place, or have diarrhea, either option being horrific. I also knew he was going to wake me up in the morning because he had to get packed and on the road for a business trip. (I remember thinking, “Why can’t I just sleep in and lock up with the spare key from the front desk like I did the last time?” but I would never actually ask him something like that.)
Worst decision ever.
I woke up because he woke me up, and it was like I was on two worlds most demonic tilt-a-whirl. I know he was trying to tell me he was just trying to wake me up, not that I needed to immediately get up, but my mind couldn’t process it that way. I was in fight or flight mode immediately. I was afraid getting dressed would make me throw up, so I literally threw a sports bra on over my tank top, and a t-shirt over that. The t-shirt I put on inside out and backwards. I needed help with my pants and socks. My right hand failed to function completely. I was struggling, not listening to anything he was saying. I fell several times, and he begged me to take the elevator. I agreed but wanted to take the stairs because I was still afraid I’d throw up. Once outside the fresh air helped a little, but I was still violently dizzy. I was more pale than I’d ever been. I had to stop several times, and almost called 911.
I spent 10:00ish-2:3ish sleeping on my bathroom floor.
I have some sores on my legs, so I know I’m flaring, but my balance issue is freaking me out. I had several seizures last Sunday, one of which was a pretty severe 2 minute long episode. I haven’t been 100% since then, with my right side feeling weak.
Time will tell. I feel like garbage right now 😦 Weak, tired, can’t fall asleep, sore, nauseas, headache, and major vertigo.