Apparently a good nap is what it takes for me to feel better.
I left work yesterday around 10:00am. I felt AWFUL. For awhile there, things started to get dark, and my hearing was all screwed up. When I got the sweats, I knew it was time to leave.
As soon as I got home, I got my jammies on and crawled straight in to bed and slept until around 2:00pm. I slept less than I thought I would, but I felt pretty good when I woke up.
I woke up because I received a call from my clinical trial coordinator, Barbara. They had a big pow-wow about me yesterday (due to my abnormal pap) and have decided that I won't take the Humira anymore, but that I can still be a part of the study (meaning they won't withdrawal me from it). While I'm sad that I can't finish that part out, I agree with them in that my health is of primary importance. I'm thrilled to still be a part of it, that way I can stay in contact with these wonderful people. AND Barbara has it all worked out to transfer my car to the doctor I wanted at Mayo clinic when I move, which is FANTASTIC!!! I know that, because of this, I'll get the best care possible.
I have a doctor's appointment this afternoon with my neph. I'm going to ask him for a script for my increased metolazone dosage, and I want to talk to him about albumin infusions. I've tried to do a little research, but the info I'm looking for isn't out there, which puts me at a disadvantage because I'm sure that my neph is going to say no. I'm just thinking that, if I can bump up my albumin enough then this swelling will go away for a bit, and then it's like starting from a clean slate. I can see what (if any) foods / activities trigger the swelling and work towards figuring out what works for me. I know he'll say no, but I've got to try. I'm also going to ask him to order a 24-hr urine to do this weekend so I can see where my albumin, creatinine and protein are at. Wish me luck!
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Glad they have found a way that you can participate even though there have been some strangeness around it.
ReplyDeleteAbout your sleeping issues - About two months before my move last year I finally had to break down and take Tylenol PM a couple of times a week. It really made a difference in my energy level - I find that I need lots of sleep and it was just not happening.