Tuesday, December 30, 2008

From a doctor with a chronic disease and Cushing's

This anonymous doctor posted here: http://some-elsie.blogspot.com/

S/he said in part

I think there must be a huge transition point when you realize that chronic relapses and remissions are going to be part of your life - with a lot of struggle and distress beforehand. Also there is the hope things will get better, with just a little more rest, etc. But then you plunge into anger and loss of what was, not knowing what exactly will be.

I continue to work part-time, but I am in a fairly constant state of low grade pain which is incredibly wearing and draining.

I've been on full disability for over 5 years, and it was an awful decision to make, but no real choice due to severity of my symptoms. I have kept my license up, hanging on to the thread of hope that some great biologic will come along and put me back in the game.

It is incredibly challenging to look well and have others expect you to function like a normal person. Most people don't know that my round face is not robustness, but Cushing's secondary to long term steroids.

I know how this doctor feels for sure.  I don't have what he/she has but I know the feeling of not being able to function well.

I'm hanging on to only 2 piano students, who  I usually hope will cancel - or I cancel them - but I'm scared to death of quitting teaching altogether.  What if, by some miracle, I do feel better someday?  In my mind I know that this is so unlikely because I've felt like this for nearly 30 years but somehow, maybe?

My temporary job is cutting into my energy, too.  People just don't understand the need to nap NOW, that I can't do just this little one more thing. 

My husband still doesn't get it, either.  If not now, when?

I don't think at this stage of the game the Cushing's will come back but there are those aftereffects.  The panhypopituitarism, low growth hormone, adrenal insufficiency followed by the removal of one of those low-functioning adrenals.

Whenever there's an ache or pain, I wonder if there's a cancer growing somewhere else, ready to grab my other kidney or worse by moving somewhere else.  Will my parent's colon cancer finally strike?

Growing older is the pits but, as they say, it beats the alternative!