Wednesday, May 22, 2013

So Now What?

So this has been an up and down week so far (as it seems like they all have been since May 1st.)  

The good news is that blood work shows that the overall Cortisol level in my body is WAY down since surgery.  For example blood work from 03-26-2013 shows the level at 28 and then on 04-10-2013 it was around 30.  A normal person's should be between 6-19.  So, this was explaining the Cushing's symptoms etc.  Luckily the blood work from last Thursday showed the AM Cortisol level at 1.  Now this means that hopefully the adrenal tumor was the cause of the problem and it is now gone but it also shows I have basically zero normal adrenal function.  It means my other adrenal gland is still sleeping.  More like hibernation really.  Like a big black bear snoring on the right side of my body.  He's been enjoying his 2-3 year nap and doesn't seem to want to wake up anytime soon.

So in the meantime the Hydrocortisone I'm getting is what is keeping me functioning.   Sort of.  Between the surgery, the lack of adrenals and the medicine my body is a confusing mess.  Everyone is being so great and happy for the surgery recovery but so far it seems the medicine will be the devil of me for the next few months (at least.)  Any home remedies for waking a sleeping adrenal gland? 

I'm not too bad day to day until they start reducing the Hydrocortisone.  Then I start to slowly crash out.  Tired, abdominal pain, chills, nausea and just sort of this overall hazy feeling.  Like I'm not 100% present?  (Are you talkin to me?)  This appears to last 3-5 days but last time it got so bad I had to bump the medicine back up so I'm not exactly sure how long it takes before it evens itself out.  Then I feel better a few days and then it's time to lower the amount of medicine again.  Sort of a vicious circle.

All this is a little technical and TMI for most I am sure but again I wanted people out there who were searching for info on their condition to be able to read my experiences.
So there you have it.  I lowered meds yesterday in the hopes that by the weekend I would be feeling good enough for some Memorial Day company...we shall see!

Stay tuned for hopefully some crafting and cooking blogs coming up soon-all this medical mumbo jumbo is getting old...

1 comment:

  1. Thanks for the update Janet. BIG HUGS! I am sure things will slowly get better.