Some Days

Some days sure are better then others.  I got diagnosed in August of 2008 and the type is multiple electron transport chain enzyme deficiencies (complex 1,2,and 3).  I have tried the cocktail and have not benefitted from it all that much which I knew might happen.  I try to take each day in stride and appreciate the good days.  Sometimes the hardest part of having a mitochondria disorder is the people who don't know much if anything about it so as a result don't really understand what's going on when medically things go awry.  All they can then come up with is oh stress management or something like that (say following a severe respiratory infection that aggravates breathing issues).  It was recenlty recommended that I have a bi pap machine for home use for times when things are severe as that had been found to be helpful at the hospital.  I have asthma along with having a respiratory chain component (related to mito) so sometimes it takes a little teasing out to figure out what's exasperated.  Anyway I guess now paperwork is in motion for the bi pap for home use and well wee if insurance covers it.  I do try to take one day at a time and appreciate the good days and have a positive outlook but sometimes between a lack of understanding of others and having one part or another fire off it can be challenging.