Cushing's disease diagnosis

Today is May 1, 2013....on this date in 2011 I was diagnosed with Cushing's Disease.  Today am I six-months post BLA.  If you told me then this is where I'd be today, I would not have have believed it.

Sadly, though, it is to look back on the past two years and remember the struggles and heartache of searching for diagnosis, treatment, waiting to see if the surgery was successful.  It feels like lost years. 

Thankful, I must be that though living with Cushing's for about 5 years, including the years undiganosed....I am considered one to be 'fast' tracked among the many others in the Cushing's community who live with the disease untreated for as long as 10 years, some even more.  What is wrong in this day and age, that doctors do not listen and trust their patients who tell them their health has changed.  Shameful.   And so Cushie's search out the few doctors who believe the patient's account of their health.  We travel far distances for diagnosis and surgery. 

Two years ago, I awaited the phone call from my doctor on the other side of the country, telling me that my lab data was conclusive and I could pick out my surgeon.  He had a list of 4 that he recommended.  In all the great states of America...there were 4 to choose from.

Surgery is not an immediate relief for Cushing's.  Successful surgery brings cortisol withdrawal which is a long process of weaning the body back to normal levels of steroid.  I am close to that maintenance dose now, not quite there but close.  Weaning takes about 3 weeks and is dreadful. It's hard to fit that into a family's schedule.  And the more I become a Cushing's survivor and no longer Cushing's patient, it becomes even harder mentally to gear of for 3 weeks of feeling rotten.

I'm still balancing my hormones too...ones that I would have never even known I had!  Replacements for aldosterone, and growth hormone are tricky!  Yes, adults need growth hormone too!  It's how our bodies regenerate, heal, build muscle, get good sleep, and balances the body composition of fat and muscle.  I just began replacing this hormone this past Sunday, it will be up to a year before I see the full benefits of doing so.

If you are reading this and think you have Cushing's...do not give up!  I was told by 3 doctors that Cushing's was unlikely.  And here today, two years after that same diagnosis I am healing and recovery and reclaiming my life!  Thank you Jesus!

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