I told my husband, "Just like most people with meds for depression, etc., I take my dosage, feel stronger, and suddenly, I think I can magically reduce the dosage. It never works. TEN YEARS of trying and it doesn't work."
Somehow, connecting with other people who have this disease has been beyond-enlightening. I can't run for the door quite as easily. Their own descriptions of personal episodes with Addison's disease sure sound as if I am in the room with them. It is TOO FAMILIAR. It is a health mirror. Meeting "my own kind" sure has been a big dose of reality.
I guess the doctors and their extensive testing from long ago are still correct: I have Addison's.
Hi Lana--thank for posting on Annie's blog...Addison's is a big deal to get used to, isn't it? And, I'm totally shooting in the dark with Annie, because she can't TELL me how she feels. It can be very frustrating. I give her 7.5 mg. HC around 6 AM, 7.5 at noon, and 5 mg. at 6 PM. I also give her .1 mg. of Florinef in the morning. This is along with her truckload of seizure meds. She's a little pharmaceutical puzzle.
ReplyDeleteI figure if she's smiling, then I must be close to right on the doses. Doctors had originally had her on a much lower dose, but after trial and error (nausea/vomiting/lethargy) I think we're getting there. For Annie, I think the seizure meds somehow screw up the way she metabolizes the HC, so that's why she's on a pretty generous dose, for a 7 year old, 45 lb. waif.
Anyway--thanks for following us, and thanks for getting in touch with us. We need each other!!
I meant what I said on your blog...you and your daughter are beautiful. Your determination is incredible.
ReplyDeleteHaving Addison's...I can say that it is so difficult to figure out our own body and the daily changing needs with our meds. I find it remarkable that you are so in-tune with your child to even know as much as you do about Addison's Disease. Of course, your situation is also complicated, yet you continue to do the research and you keep fighting to help her as best you can. You, my dear, are a true warrior. You do a better job of tackling Addison's than most of us can do for ourselves!
Sometimes, our miracles are simply in the smile of someone we love. And, your mother's love for her child is precious beyond words.
Keep sharing...you provide such indepth information and truth; I am blessed to know you. I agree, we do need each other; being touched by Addison's Disease is only a start...God has his reasons for connecting each of us.