4 months post-op BLA (bilateral adrenalectomy) upate

It should be considered a good sign that I went so long without posting!  I am 4 months post-BLA this past weekend.  Adjusting to life with Addisons while weaning down to my therapuetic steroid dose continue to be a roller coaster ride.  I can say that I most certainly feel different, and that I believe my Cushing's remission is closer with every steroid wean I succesfully endure.  I say 'succesfully' as recent prior attempt did land me into AI (adrenal insufficiency) and resulted in three days down recovering from just that.  I took the wean much slower this time, two weeks to be exact.  And though I still feel every ache and pain that a wean brings, I do think I made it through this time.  And hopefully just 1-2 more weans to go. 

With that said, last week I discovered the misshapen, lopsided belly I have been noting for several weeks and then finally bulged...is indeed an incisional hernia.  Sigh.  I see a surgeon this week to find out how this will be dealt with.  And I find myself learning, much sooner than I had hoped, the protocol for surgery for steroid dependent patients.  And what questions to ask a potential surgeon to make sure he/she is competent to care for a steroid dependent paitent.  Sigh

I wanted to share with you all some videos of members of my Cushings community.  These brave individuals met with a drug company last fall and allowed their stories/interviews to be filmed.  If you have time to watch any or all of the, you will have a better understanding of the difficulties living with Cushings brings.  Thanks for watching.  Please comment your thoughts on them...I'd love to hear from you!

Short video interviews with a Cushie