Yesterday I went for my immunology follow-up appointment. As usual, it is time to try and decrease a medication. Last night I took the reduced dose, and this afternoon I have to use epinephrine. I understand the process and that the medications are possibly causing some of my other problems, but it is becoming terrifying to change a dose. Feeling bad is better than being DRT (a rescue squad term for "dead right there"). I really don't want to hear the boys singing "she's going home in a body bag, doo dah, doo dah". My apologies to those who don't appreciate dark humor. Sometimes it is all that gets you through.
Other than changing medicines my appointment was another pep talk. Respect the medicine. It is doing what it is supposed to do.
Maybe I am becoming more cynical, but just one time I would really love to hear just one piece of really good news. One day they will be able to isolate the antibody that triggers my problems. I am selfish and want it to be today. I also realize that I have a very rare disease and the bulk of research money goes toward more common diseases. It may not be during my lifetime that the antibody is isolated.
The Idiopathic Anaphylaxis Support Group has been very helpful. There are other people all over the world that have the same disease and the same feelings that I do. The group shares news of the very latest research, plus all the daily difficulties we experience. Knowing someone understands and feels the same way makes things just a little easier to bear.