Friday, May 25, 2012

My Story.

I haven’t heard back on the biography I wanted to use, so:

My name is Stanley Loper and I’m a 56 year old male living in Brunswick, Georgia USA.  I was born in Jacksonville, Florida and have lived in my Dad’s home state of Michigan as well as Georgia, my mother’s home state.  I’m the second of four children.  And I’m the face of Cushing’s Syndrome.

I was the sickly one from the get go.   Something wasn’t right with my lungs when I was born and several times as a toddler I was found in respiratory arrest, already blue by the time I was found and revived.  I suffered often from chronic lung disease, largely bronchitis and asthma and have been told my parents were told not to expect me to survive childhood.  But I’m a fighter who just doesn’t give up.

I was also overweight as a child, very overweight, the only one of us kids to be so.  Folks like to say I take after Mom’s side of the family more than Dad’s, they don’t know the half of it, but more on that later.

When adolescence came things seemed to get better.  By that time Dad had divorced Mother and sent us all down to Georgia where she grew up.   I gained my height, slimmed up some, though even at my lightest weight I still looked like a stick man who swallowed a cannonball.  I was still, physically weak, but still one tough kid as anybody who ever stood on the other side of a grass field football line learned pretty quickly.  I always played for keeps.

I graduated high school, the only one of us kids to do so.  Put myself through a trade school and went to work supporting my mother and youngest brother until I married a divorced woman with two children in 1981 at age 25.  That is also when my health trouble began again.  My lung problems returned and I started gaining weight, about forty pounds overnight.   That was also when  the economy really bottomed out in the South and I lost my job and   spent the next sixteen  years  hustling up whatever work I could find to support my family in  small town rural Georgia .  Still, I kept gaining weight and nothing would take it off.  I often walked miles to work without losing a pound.

Two years after I married I entered LPN school and it was there that I first heard about a rare disease called Cushing’s Syndrome.  As I sat in class and   listened to the list of symptoms, the distinctive fat concentrated in the body trunk, the “buffalo hump,” and the other symptoms I realized the teacher was describing my mother!  Mother had suffered from those symptoms for as long as I can remember and it was her sickness which broke up her and Dad’s marriage.   Excited, I went home to Debra, my wife, and told her I now knew what mom’s problem was.   Debra asked me to   tell her the symptoms, which I did.  Then Debra floored me when she said, “but Stanley, except for the mental sickness that’s you!”  That was December of 1983.

It didn’t take me long to find out how hard it is to get a diagnosis.  The first doctor I went to ordered a serum cortisol, I already knew from that he wasn’t serious.  Sure enough, when it didn’t come back positive he smirkingly told me I didn’t have Cushing’s and simply needed to have some self control at the table.  He did the same to mother.  As far as I know she never mentioned Cushing’s to a doctor again so long as she lived.   But I’m a fighter.

I learned to bide my time until I could find the right doctor.   But my health deteriorated over the next seventeen years until that time came.  By that time I was disabled by the progress of the Cushing’s.   One day my doctor at the time called me into his private office to suggest I have a radical panniculectomy, a procedure to slice the body fat off surgically, to take off about a hundred pounds.   I agreed to the procedure on the condition that a test be run first for a specific problem I thought I had just to make sure we weren’t wasting the cost of the operation.

After listening to me present my case the doctor agreed and ordered the first real test for Cushing’s, a 24hr urinary cortisol test.  Since we’ve since established my Cushing’s is the rare cyclical Cushing’s I’m lucky the test, and the follow-up test the doctor did for confirmation both came back positive.  He also did some other testing and told me I likely had an ectopic tumor, that is a tumor somewhere other than the pituitary or Adrenal glands driving my Cushing’s Syndrome.  Since Cushing’s is supposed to be treated by endocrinologists, the doctor referred me to one.  She would be the first of five endocrinologists I’ve seen over the next twelve years and I have yet to be treated for Cushing’s syndrome.

First, most have tried to prove the diagnosing doctor wrong.    In the process it was established that I’m cyclical, and that my cycle is extreme.  It swings all the way from Cushing’s Syndrome to Addison’s disease and back again.   So I have many of the symptoms and characteristics of both diseases, such as the tan skin and degenerating back of Addison’s and the morbid obesity, etc. of Cushing’s.  I have yet to see so extreme a cycle described in any medical journal yet.  For years the treatment protocol with cyclical Cushing’s which has no obvious tumor is to leave it untreated until it becomes full-blown, or florid Cushing’s.  So I’ve been in a medical holding pattern while the doctors concentrated on my secondary conditions, such as my diabetes.

Socially Cushing’s has been a nightmare.  Society already stigmatized morbid obesity, so as my weight went up, my social life disappeared.    More and more my weigh was used as an excuse by my “friends” and even family to exclude me. The most common excuse was I was too heavy for their furniture.  Right now I’m banned by my stepson, who married into wealth, from his house on both that, and my low social status grounds.  The excuses currently in use are irrelevant.   This is all too often the experience of those who suffer from Cushing’s.

As this disease has progressed I’ve grown weaker, more sickly as the progressive weakening allows other problems to emerge, or are even caused by the disease.  I almost died from a pulmonary embolism in 2002.  I spent ten days in the hospital that time.  I’ve also been hospitalized again for blood clots and had an umbrella device put in the major vein which leads to the Vena Cava.  I’ve had my gallbladder removed, a bone spur removed, and another surgery to remove a tumor we hoped would be the tumor driving my Cushing’s.   I have a rare form of Rheumatoid Arthritis, whose attacks appear to be linked to my Cushing’s cycle.  In my case it attacks my eyes and is quite painful.

I’m in and out of the ER too often now days. For things like opportunistic infections of my lungs, which don’t need the abuse to begin with.   My back has degenerated to the point that I can no longer walk as well as I used to.  I often use a cane, a TENs unit, and even narcotics at times.  My stomach can no longer handle certain foods and I’m on medicine for that, along with diabetes, problems with gout, and I can go on and on.   About the only bright spot in my health is that my heart is in good shape and my circulation is alright.  We keep a close watch on that.  But even it will only be able to handle so much.

I basically live my life in a room and have friendship through the internet. I mainly leave it to go to one of my doctors, or the emergency room.  It is hard being a zebra.

There you have it, the story of me.  Now, life isn’t all glum however dark what I’ve written may make it seem.  But I’ll examine that in another post on how we Cushies can have meaningful lives with some bright spots in them.

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