I've been asked twice in two days if I'm being given cortisol to balance out my low days, so I feel the need to explain in case anyone is interested in reading. I've actually had one MD offer to do just that. In the short term I'd love it, honestly. On the days when my pain and muscle weakness are at their worst I wish that was a reasonable option. When I'm physically and emotionally worn out and life feels so hopeless, when I see the long road of recovery ahead and haven't even hit the official diagnosis yet, I can feel desperate.
Of course I wish I could function, wish I could be happier and do all the things I miss so much. But it is like my little secret "back up plan" that I haven't dared to tell anyone about till today, because I know how stupid it is.
My high cortisol days do allow me to function better, but they are by no means normal or healthy and have their own uncomfortable symptoms. It is the high cortisol days that are destroying my body's organs and systems, and left untreated, will ultimately kill me. Taking steroids when my body is producing too much would speed up the decline and increase my odds of permanent organ damage. It is because of the high days that I get the low days, as it is suppressing my pituitary function. To take cortisol would further suppress my pituitary, making a long-term cure nearly impossible to achieve.
If there were no chance for a cure, then maybe trading years of slowly dying for a few good months followed by a speedy decline would be a worthwhile option. I cannot trade my entire future for a few months of mediocre improvement, because that is exactly what I would be doing...and because I hope for so much more.
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