Initial Onset of Cushing's Disease

For me, the initial onset was at once very drastic and noticeable, and yet unrecognized.  Over the span of roughly a year:  I gained roughly 60 pounds (which couldn't be lost by diet and exercise), my hair went from thick to thin and wiry, my acne became horrendous (and untreatable, even by the "harder" drugs they made), I went from being a morning person with no real sleep issues to being unable to fall asleep at a reasonable hour and waking often throughout the night, I developed bright red stretch marks all over my body (spanning literally from my elbows to my knees, front and back, from a combination of the weight gained and the hormones thinning my skin so that it literally was "ripping" as the weight was gained), I went from being a happy and cheerful person to being suddenly anxious and depressed (with no reason for it and no medical treatments had any effect, either), and I started bruising easily and getting sick more often.

I was a teenager at that time.  My father had died a couple years before and I had also switched from playing a lot of sports (basketball, softball, even competed in jump rope at a state level) to taking music lessons a few years earlier too.  When the anxiety and depression hit, everyone assumed it was because of my father's death a year or two before.  When the weight gain hit, it was assumed that it was because of the change in habits a few years before also.  I was just fat, lazy, and choosing to be unhappy.  It is something I'm still trying to un-learn because it became a part of who I am.  The un-learning process is made ever harder by others who have no understanding of this disease STILL treating me as if that is the case.  If there is something wrong with my health, it is because I am overweight.  I am overweight because I overeat, don't know how to eat healthily, or didn't exercise.  I am losing muscle mass because I'm lazy.  I can't sleep well at night because I'm not active enough during the day.  And not being able to fall asleep at a reasonable hour at night is because I haven't learned to turn off my thoughts.

None of this could be caused by a disease, a tumor...it must be my fault.   I didn't know any better and accepting that blame internally has led me to develop a skewed and incorrect sense of who I am and of my self-worth.  In some ways I think it is a blessing that I don't know what the "real" me is like --the adult me without this illness.  Because of that, when I do receive my remission/cure, I hope I will only see the benefits and improvements that treatment has brought.  Many look back and see that they won't get back to that healthy "self" they were before, and it is a source of grief.  But on the other hand, I also don't know who I am without this disease.  Some might consider this overly dramatic, but imagine a disease that affects over 70% of your body systems...that directly affects your emotional, physical and mental states.  There is still a "you" in there, but how would you identify that "you" and separate it from your thoughts, emotions, physical body, and actions?  I dare you to give THAT a try!  (And if you happen to find a good answer, let me know!) 

This disease has changed my ability to think, remember and concentrate (literally shrinking my brain).  It has changed my emotional reactions due to the major fluctuations in hormones (even my zen-master friend was unable to control his anger while the steroids raged through his body, but awoke from surgery a different man --a calm man).  It has changed how I relate to others and my ability to form relationships (In too many ways to be able to list here, some internal and some by the way others react to me).  It has changed my physical abilities through bone and muscle wasting, a complete lack of energy, and uncontrollable weight gain...not to mention drastically changed my personal appearance.  It has changed my ability to sleep at night (my cortisol is often too high at night, messing up the circadian or diurnal rhythm, while being normal or even low during the day when I should have more energy to be wide awake).

Can I get my physical body back?  Yes...mostly.  I might have to trade this untreatable disease for a treatable, life-long one.  And while I expect great improvement no matter which surgery method brings a cure for me (another pituitary surgery or bilateral adrenalectomy), there will be some permanent damage that just cannot be undone.

Can I get my emotional self back?  Yes and no.  I can become emotionally healthy for sure, but there will always be a rememberance of the lessons learned by the hardships I have gone through. 

Can I get back my mental self?  I sure hope so!  I know many are again able to concentrate and remember, but I've seen data suggesting that some damage (ie, brain atrophy) is permanent.  But hey!  Thinking clearly and remember things is a major improvement!

I'm trying to be realistic in my expectations.  I know I'll get major improvements some day, and I REALLY look forward to that.  I've missed out on so much, and my children and spouse have missed out on so much.  No matter what form my remission takes, I look forward to truly being able to participate in their lives, to live.