Felt pretty good for a few days , even racewalked during a research follow up visit ( more about that later), but now I’m starting to slide back . I don’t know if it’s the steroid taper ( I’m still at 40mg) , or if I’m rebounding, or if I starting exercising too soon, but somethings not quite right.
Today’s test walk was very disappointing. I was so short of breath, I couldn’t racewalk..at all! The best I could do was some regular walking with an occasional sprint thrown in so I that wouldn’t get bored.
My Peak flows are all over the place as well. Today before my walk they were 375, after my walk…240 (almost my red zone). Even when I’m not exerting myself, they’re dipping 100-200 points without rhyme or reason. In addition, my shortness of breath has been near constant, which makes me very irritable and quite bitchy. I havent been able to break through to my green zone in weeks now.
My lung doctors have been expressing their frustration as well. Not so much about the speed of my current recovery , but because I’ve ended up in the hospital 5 times this year and I seem to be getting critically ill now , at the drop of a hat.
They’re now classifying me as a type-1 brittle asthmatic (changed from a type-2) . We’re currently working on a new asthma action plan which includes close monitoring of even the most minor of flare-ups , so they don’t escalate into life- threatening ones. They also want me to stay on steroids ….permanently!
I’ve agreed to stay on a daily maintenance dose of 20mg, but anymore than that is totally out of the question. I might have agreed to more if I was 23 years old, but I’m not…. I’m 53 years old now. I’ve lived a long life with this disease and I’m just too tired to ride the steroid roller coaster anymore. Besides…. a higher maintenance dose would kill me way before the disease does. I ‘ll take my chances without them.
On occasion I receive emails from other asthmatics, commenting on how it is that I’m able maintain such a happy outlook on life with such severe disease. Some have even accused me of being in denial or hiding something. I hope this post dispels those notions. I have bad days just like everyone else, I just don’t let them get the best of me.