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Elizabeth's Story

I was tall from the time I was in the 7th grade - 5'7". I was "curvaceous" -- skinny wasn't in style back then. Clothes looked nice on me. But in my freshman year of college I noticed that my A-line dresses were wrinkling a bit at the waist, as they were a bit too long in the bodice. But I was a sorority girl, an honor student, and had found the love of my life, whom I saw at every moment I wasn't in class. Thank heaven for curfew in the dorm, or I would never have gotten any studying done! At the end of the summer following my sophomore year of college, I married my love, and we embarked on our life together.

His seismograph work took us from Texas to North Dakota -- during the winter! I'd never even seen snow before. I stayed home and cooked and baked, and we ate a lot! We both gained weight and soon couldn 't wear any of our old clothes.

The following year his work sent us to California. I worked as a very chubby accounting secretary. Then I began having some really peculiar medical symptoms. My face was growing very round, and I began having lots of back pain. I went to a chiropractor, who popped my bones. I began fighting with my husband over little things, and getting hysterical over small incidents.

Then his work sent him to Alaska, so I went home to stay with my parents. They could see that I was ill, so they took me to a doctor. I was diagnosed with Rheumatoid Arthritis and was given regular cortisone injections. I was also put on a lot of other drugs, muscle toners, and muscle relaxants, tranquilizers, pain pills, etc. I began having seizures. I would feel numbness beginning in one foot, traveling up my leg to my body. I would run for the bed. The numbness took over my entire body, and for a few minutes I felt completely paralyzed. Then I would feel it draining away and soon I would recover. I was having other types of muscle spasms, too. My hand would become uncontrollable. In retrospect, I think I was having some of these symptoms because I was being overdrugged.

My sweet husband became so frightened about my health that he quit his job and came home. We both lived with my parents for a few months. My condition seemed to stabilize, though I was extremely emotional and threw "hissy fits" often. We thought this was due to the stress of living with my parents, so we purchased a mobile home and moved out.

I quit taking the cortisone injections and most of the other drugs and seemed to improve for a while. Then I fell going down the porch steps one day. I was in severe pain and needed to use crutches. Again I tried a chiropractor, who pushed on and popped my bones. I began taking enormous amounts of aspirin for the pain.

My emotional state was a wreck. I couldn't sleep at all and would sit up all night, working on craft projects. I screamed at my husband a lot and treated him badly. He began to distance himself from me. His mother kept telling him that I was crazy, that all my problems were "in my head." Little did she know how right she was. It was a pituitary tumor, but it would be several years before we found that out.

Meanwhile, I had another bad fall. We were having a patio party. I was horsing around and pretended to kick my husband. He caught my foot in mid-air. This threw me off balance and I went down on the concrete. I was in terrible pain. The party grew quiet. My husband just looked at me and said, "Quit pretending you're hurt. Get up." Our friends looked at him like he was crazy and everyone went home. I don't remember how I got up, but I was on crutches again.

The following Christmas we had a party. I was so fat. My face was huge and round. I still have that picture somewhere. I was unrecognizable as the person I had been in college.

Finally my marriage completely disintegrated. My husband began coming home from work, changing clothes, and going out again. He was involved in a lot of activities that didn't include me. He began calling me names like "Dumb-ass." I threw a bag of garbage at him one time. All we did was yell. I filed for divorce.

When I came home and told him what I had done, he said, "Good. If you hadn't done it, I would have." He took all my college pictures out of his wallet and threw them at me. He said, "One of my friends saw this picture and wanted to know who my 'girlfriend' was. I told him that was what you used to look like." He packed up his belongings and moved out that very day.

I missed him dreadfully. I still loved him so much. I didn't have any money and didn't want to tell my parents, who knew we were having "problems," so they stayed away to "give us space." I needed to get a job but my back hurt like hot knives were stabbing me all the time.

Again I tried another chiropractor. This one saved my life -- my eternal thanks to Dr. John Williams in Pearland, Texas. After taking x-rays, he called me into his office. He had 3 sets of x-rays on his lighted board. He said, "This is the x-ray of a normal 24-year-old woman. This next x-ray is of an 80-year-old woman. This third x-ray is yours. Your bones are thinner than those of this 80-year-old woman. Something is washing the calcium out of your bones, and you need to get yourself to a medical doctor, QUICK!"

I went home to my parents and told them what he said. They took me to the Diagnostic Center Hospital in Houston. An endocrinologist named Dr. R. Frederick Gregory diagnosed Cushing's Syndrome. He tried medications to slow the output of cortisone by the adrenal glands, but nothing worked. They attempted to take a cat scan of my brain, but this was a medical test still in its infancy, and results were "inconclusive." The doctor made the decision to remove my adrenal glands. This was 1972, and this was not a common surgery. Even the doctors were not sure of the outcome. They did tell my parents that I would probably have an "abbreviated" lifespan.

The doctor had a great deal of trouble regulating my blood pressure after the surgery. The prednisone and Florinef were adjusted and readjusted, but my blood pressure would fall off too much when I stood up.

Then I developed pulmonary embolisms. I went back to intensive care. I made it through the crisis, only to get another embolism 10 days later. Back to intensive care. Two weeks later I seemed past the crisis and threw yet another embolism. I was so weakened, and my lungs were filling up with blood. My prognosis didn't look good. From my ICU bed I asked my dad if he would call my husband, from whom I had been separated 5 months now. I loved him so much but he hated me. When my dad called him and told him I might die, he replied, "I don't care. I don't love her anymore, and there's no point in my coming to see her and get her hopes up that we might get back together."

A lung specialist was called in. He placed a needle in my lungs right through my back and drained 2 quarts of blood out of my lungs. My condition improved after this and after another week I was able to go back to a regular hospital room. Finally, after 68 days in the hospital, I was released.

That was a rocky year. I talked my husband into making the trailer payments for me so I could stay there. I promised him I was looking for a job. But I couldn't talk to him or see him. He wouldn't have anything to do with me. I'd stay at the trailer a few days and cry, then go home to my parents' house for a few days and go to bed there and cry. I couldn't talk to my husband and tell him about my illness. I so desperately wanted him to understand that I really had been very sick, and that now I could be well again and could be the girl he fell in love with. But he would never give me a chance. I had even lost weight for him. I weighed 98 pounds and had become anorexic! I thought if he could only see me now, really thin, maybe he'd at least like me again. But he never gave me that chance.

My divorce went through without my knowledge. I found out later that my lawyer didn't even show up in court on the day of the hearing. My husband "won" the divorce by default! This had been my one hope, that I could appeal to the judge and tell him how sick I had been and that I was going to be well now, and that we needed to give the marriage a chance. But I never had that opportunity.

Several months later I found an accounting job and got my own apartment. Shortly thereafter, I met my current husband. We married 3 months after we met, and we've been married now for 31 years.

I've proved the doctors wrong. They told my current husband, David, after I was hospitalized the first time for acute adrenal crisis (shock) that I probably wouldn't live another 5 years. Here I am, 32 years later, still going strong! I'm in and out of the hospital every year, but good doctors have always pulled me through.

Oh, I did have another cat scan in 1981. It showed that I had a huge pituitary tumor. But when my adrenal glands were removed, the tumor no longer received the stimulating adrenal hormone, and the tumor atrophied on its own. I was left with an egg-sized "empty sella" -- the place where the pituitary gland had been so enlarged. I have no pituitary function now and have to take replacement hormones for all the processes handled by the pituitary, as well as the adrenals.

I was never able to have children, but I have had a pretty good life. My height leveled off at 5'1" -- 6 inches less than it had been in college. My back is somewhat rounded, but I have been able to remain active, work full-time jobs, hike with my husband, raise show dachshunds, and have a full life. I have some back pain, but it's controllable with OTC medications. All in all, I'm in pretty good shape for the shape I'm in! Thank you, Dr. Williams and Dr. Gregory, for giving me my life.

I never heard from or saw my first husband again. One of my greatest wishes is that he knows how sick I really was, and that I wasn't crazy. But I don't think I will ever know that.

If you want to contact me, please e-mail. I'd love to hear from someone else who has lived through this horrible disease.

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