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Discouraging

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.

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7 thoughts on “Discouraging

  1. Steve, you are amazing! You scare the crap out of me! You are truly the Unsinkable Steven! Please take care my friend…..

    moon

  2. Hey there, and thanks for stopping by my site. I do a lot of reading about adult asthmatics so I know what’s in store for my daughter, should her asthma get worse/stick around her whole life….if she has to battle severe asthma as an adult, I want her to do it the way you are, by fighting every step of the way.

  3. (((HUGs)))

    Pred sucks, but if it keeps your peak flows more stable over the long run and out of the hospital then it is worth it. I understand about not wanting to go over 20mg a day, the side effects suck. I think you are right on when you say the steroids would kill you quicker. Have you tried using pulmicort respules? If I end up having to go higher on my daily/every other day dose of pred I’m going to ask about trying them instead. Some of the research I’ve seen says good things about it.

    Brittney

  4. Stephen — you are simply my hero and a great motivator — I am dedicating Nagano to you man — will proudly wear your photo on my race shirt — having you with me will surely push me to the ultimate goal — hope that is ikay with you
    Allan

  5. Believe me Stephen — I will be doing it for myself — having you there is extra motivation! And believe me I will need all the help I can get!!

  6. I guess I don’t know how anyone could think you’re in denial. I’ve learned an amazing amount from your trials and tribulations. It’s also made me think about my own lack of motivation sometimes. You’re the real deal … and still see the glass a 1/2 full … at the very least! Keep posting, trucking and going!

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