Quote:
Originally Posted by alice md
jana,
you ask-why have I not been in crisis?
how do you define crisis?
the way you describe it, sounds like you have signficant respiratory muscle weakness and have learned to pace yourself accordingly.
no respiratory test is entirely accurate and right for everybody, and in order to do a proper respiratory evaluation you need multiple tests.
the counting test is a very rough estimate, and obviously a tall man, would be different then a small frail woman. just like other respiratory tests. it is meant for people that are not sure about what is going on, not as a substitue for proper respiratory evaluation.
I believe that if a newly diagnosed patient, who did not get used to the "MG pace" yet, would have the degree of respiratory muscle weakness that you have he/ she would not feel fine.
it sounds like you have very limited respiratory reserves, that you have learned to use wisely. which I think is great.
alice
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, Alice. See, I think that YOU and MOSHE are RIGHT ON TARGET with this pamphlet thingy. I DO think that I have significant respiratory weakness AND, thank you
, I believe that you are RIGHT -- I HAVE somehow figured out HOW to "manage" to cope or use my reserves wisely. But, I suspect that I am NOT the only one DOING this -- and somehow this may be OUR "downfall" -- this may be what keeps some docs from taking us seriously.
If I (or you or Joanmarie) is literally one step away from a breathing crisis, yet am somehow able to walk for a mile or two (or see patients or go to the store). I mean, I can almost "understand" the doctor's point of view. One minute FINE -- the next SECOND -- "dying".............it MUST seem kind of odd IF you aren't IN our bodies.
It is like we are walking on a tightrope -- perfectly balanced.......just as long as there is no wind -- no one yells from the crowd below -- no feathers drop from birds overhead and add weight to one side......
I'm 5' 8" tall -- "ain't" nothing FRAGILE 'bout me -- hehehehehe.
I define crisis as being in the hospital for breathing difficulties -- and needing assistance with a ventilator, Bipap, or Cpap.