My CSRF Story.

I finally heard back from the Cushing's Support and Research Foundation on the story wrote for them about me.  They gave me permission to post the story here and asked that I include a link to them which is something I'm happy to do.  I've made a couple of changes to correct mistakes.  It appeared in last year's summer edition of the print magazine:

I've decided to share my story; a story in which CSRF has a part.  I was born April 28, 1956 in Jacksonville, the second child in what would become a family of six.  Mother was always overweight and until adolescence so was I.  Even in adolescence, though, I always had a bit of fat on the middle which no amount of exercise or dieting could get rid of.  I've been told by one of my doctors that this could be considered a sign of problems with my cortisol even at that early date.  Mother, though, had all of the classic signs of Cushing's Syndrome, the truncal obesity, moon shaped face, and even the mental illness which is known to sometimes accompany the syndrome.  Growing up in her household was not an easy early life as dad looked the other way and never sought help for mom, eventually divorcing her and leaving us in her care when he'd had enough.

After I married at 25, I started gaining weight again, quickly becoming morbidly obese.  Although it became more difficult to do many things, including finding work, I didn't worry overmuch other than to wonder why it was so hard for me to lose weight.  The answer started to come when I entered an LPN school.  During the lecture about endocrine disorders the teacher covered Cushing's Syndrome and as I sat listening all the pieces fell in place, for what my mother suffered from.  Armed with this new knowledge I went home to my wife and announced to her that I finally had the answer to mom's problems.  After describing the symptoms of Cushing's syndrome to her my wife said to me, "but Stanley, except for the mental illness that describes you!"  Needless to say, that struck me dumb.  That was in December of 1983.

I would learn pretty quickly just how hard it is to get doctors to consider Cushing's syndrome at all.  Mother and I had a doctor at the time who wasn’t really open to looking at Cushing’s as a potential problem.  In both of our cases our doctor ordered a serum cortisol and then announced to us we didn't have the problem when the cortisol came back arguably within the correct range.  Then he lectured us both on diet and control.  Mother would die in 1997, officially of COPD at 65 years of age.  She never had another doctor who would even go as far as that first one did.  That would be the first of many frustrations when dealing with doctors over the years.

I never forgot Cushing's, but learned to bide my time and pick the right opportunity and doctor to suggest Cushing's to.  The opportunity came in 2000, when the doctor I'd now had for several years after moving to the area invited me to his personal office instead of the examination room to suggest a procedure he wanted me to undergo to treat my morbid obesity, now 425 pounds, having a panniculectomy performed.  A panniculectomy is a procedure in which the pannus, or fatty portion of the belly is surgically sliced off.  I told the doctor I would agree to the surgery if he would agree to first have me tested for something to make sure we weren't wasting time and money.

Dr. Nelson asked me what I wanted to be tested for and why.  So I told him I wanted to be tested for Cushing's Syndrome and why I felt the test was justified.  After listening, the doctor reached over to his shelf and pulled a reference work on Endocrine disorders off the shelf and looked Cushing's up.  After reading the section of Cushing's he looked at me and told me I'd made my case.  When Dr. Nelson ordered a 24hr urinary cortisol I knew I finally had a doctor who was serious about the possibility as well.

Given what I now know about my illness, I'm episodic, I'm thankful that the cortisol and its follow-up test came back positive, though mildly so (250).  The doctor diagnosed me with Cushing's syndrome and arranged for me to see the first endocrinologist I went to see.  That was but the beginning of a very long and frustrating journey which still has me untreated for my underlying condition, Episodic Cushing's Syndrome. 

 

The first endocrinologist was really nice.  After examining me she agreed that my obesity was consistent with an endocrine problem and assured me that "we will get to the bottom of it and get you the help you need."  However, she was in her last weeks before giving birth and passed me on to a colleague for my follow-up.  That colleague, another woman, shut the door in my face to treatment and seized on whatever evidence she could to justify it.  That was also the first, but not last, time I would have a 24 hour urinary cortisol on the low side of normal.  Dr. Neslon made a few calls and told me I'd fallen victim to an interoffice rivalry. Go figure.

Dr. Nelson then sent me to Georgia State Medical college, a much further travel to see a new endocrinologist.  Now I'm going to name endocrinologists because that new endo and the one I now have are folks l like and trust; you'll see why in a minute with the first one.  But another word, when I went this time Dr. Nelson told me not to tolerate any pronouncement that I do not have Cushing's, "You have a diagnosis and you are going in order to find out what will now be done about it.  That is the only reason I'm sending you."

Dr. Sadurska was the next endocrinologist I went to see.  And I took a new 24hr urinary cortisol which was indicative of Cushing's.  Dr. Sadurska did her initial exam and told me that my muscle mass loss wasn't enough in her experience to confirm Cushing's.  She also told me that what I'd told her about the results obtained by the other endocrinologist meant I was suggesting what was known as "Cyclical Cushing's Syndrome," something she'd never seen and didn't believe existed.  However, on the follow-up visit Dr Sadurska came into the examination room and opened the file to look at the tests and stood there staring at the results with her mouth open for a good five minutes.  My 24hr urinary cortisol was <02 (less than two)!  Over the next several visits we would establish a variance in my 24hr cortisol from 0-256, though we weren't able to do enough of them to establish the exact pattern.  Dr. Sadurska was flexible enough to recognize when her opinion was incorrect and adapt!  That is why I would trust her again if she ever came back into the picture and would recommend her to anybody.  She has moved on, though to practice somewhere else.

It was about that time I became involved with the Cushing's Support & Research Foundation.  My stepson married about that a woman about a year or two before who made my weight an issue.  She started complaining that her valuable furniture just wasn't made to accommodate my weight, so I wasn't really considered welcome in her home.  She, and her husband, also convinced my in-laws to stay at their place during their semi-annual visits to the area.  On one particular visit my wife was called and told that if I wanted to see my in-laws, I had to bring my own seating as they had nothing for me to sit on strong enough.  I ended up staying home, for the first time and hurt.  That night I was surfing the net looking for new research on Cushing's and found the Foundation's website.  I wrote a really emotional e-mail to the Foundation, venting my frustration in order to get the whole thing off my chest, sent it, and forgot it.  To my surprise I found an answer to my message in my inbox which would turn out to be life changing.  I'm ashamed I cannot remember the name of the wonderful lady who answered my missive, but I owe her a lot.  The answer was just what I needed, the writer expressed outrage at the way I was being treated and told me that I was not at fault but a victim several times over.  The lady held an important position, vice-president, I think, and over the next several days we exchanged e-mails and she kept up the effort until she was sure I was past that critical time.  She put my name on the mailing list and I've enjoyed the newsletter ever since.  It reminds me I'm not alone and that there are people who care, after all, the only thing those close to me seem to see are the bad parts.

Since then, on the social side, I've become somewhat isolated.  I stood up to my stepson and became the family pariah who is now excluded from all family functions on my wife's side of the family.  I've watched my health generally deteriorate as new problems arise and ravage me.  Since my Cortisol cycles and we can't locate the tumor, surgery and medical treatment is out.  Because I have a huge ventral incisional hernia from a gallbladder removal a bilateral adrenalectomy is contraindicated, so my Cushing's remains untreated.  That means I get the worst of both worlds with the obesity and its secondary problems and the rather nasty spinal degeneration and effects Addison's Disease is famous for.

I've been through a pulmonary embolism, surgery to implant an umbrella in my ascending major vein because of another blood clot in my leg, and other things.  Since then I've developed an autoimmune disorder where the immune system periodically attacks my eyes and may eventually take away my sight.  And I could go on.

The one positive on the health front is that, operating on the theory that I can lose weight when the cortisol is down and minimize the gain when they go back up for a net loss I've managed to bring my weight down to 320 pounds from a peak of 425 pounds.  Still my back problems are making me more sedentary and making it more difficult to lose weight. I recently found out that my baby brother may be a Cushie as well.  Hopefully, he will soon be seeing an endocrinologist.  Right now my main support network is online where I have quite a number of fellow Cushies as friends on Facebook, they out number the rest of my friends.  They even include a cousin by marriage 1500 miles away.  Funny how a thing like this can bring distant family into one's life.  I was pleased to note in the newsletter that one of those friends, Susan Kate Findley, was listed as a new member of CSRF.  I'll never forget that someone from CSRF was there for me at a critically low time and I don't mind doing what I can to be there as well.

For all my story sounds so pessimistic, I'm a fighter and survivor who is determined to live to a good, old age and enjoy whatever I can out my life.  I still pester my endocrinologist from time to time so that he doesn't become complacent and maybe one day we'll be able to do something more positive than just wait.  I've taken up two new hobbies, Flamenco guitar playing and writing fiction, to bring some sunshine into my life.  Like I wrote, I'm a fighter. Still, I’ll never forget CSRF, the folks who were there in the beginning, both for us, and me.

The link to the fine people at CSRF is:

Cushings Support and Research Foundation