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Elizabeth's Story

How do you start to explain something as crazy as this. I suppose there is a logical place to start such as the beginning . But, when you don't know exactly how to pinpoint that beginning it is very hard. Why would this be hard you may think. Well, with this disease you have so many other diseases that it mimics that it makes it hard to get a solid diagnosis. Add to the fact that most doctors are unfamiliar cyclical Cushings or, if they do know anything about it, the docotrs summarily dismiss you as being someone who is just flabby, fat, depressed, and if you are a woman within a certain age range, menopausal and it makes for a tough time indeed.

The symptoms that began to plague me most was the extreme fatigue with episodes of not being able to sleep. You would think that if a person was so exhausted they felt as if they would keel over at any moment they would and should be able to sleep with no problems, right? Well, not so, at least for me. I just assumed that this was just another part of my quirky makeup. After all, for most of my life I seemed to function better at night than I did in the morning. I was also a mother and everyone knows that mothers are notorious for feeling tired and staying up to get things done after everyone else sleeps.

Gradually I began to notice other changes. I started to gain weight. A lot of weight. I, along with most of my immediate family, were thin. I weighed in at a whopping 98 pounds when I married. As a matter of fact I was so thin that a lot of people thought I was ill. I wasn't . I ate pretty much anything I wanted and was extremely active. I rarely sat still. Even after four children I was thin. The most I weighed was 115-120. I thought that was huge after being so skinny for so long. Oh, to see anything near that today.

Because of some problems I was having I underwent a hysterectomy at the age of 26 or so. I still had one ovary so I thought everything would be okay. The year of my surgery I gained around 30 pounds. Even at that I was not what most people would think of as fat. I was told I finally looked healthy. The fatigue began to plague me off and on. I just assumed it was due to the surgery and the adjustment my body was making. I maintained my weight around 145-160 over the next few years.

Jump ahead to 1996-1997. That was an extremely tough time for me and my family. In one year I faced the death of my mother and my oldest sister, not to mention a myriad of other very personal problems. I began to have bouts of my heart feeling as if it were racing and skipping beats so much and for so long I felt as if I couldn't breathe at times. I thought it was all due to stress. I didn't go to the doctor. I started to pull away from everyone and everything. I couldn't sleep even though that was all I wanted to do. I had episodes where I would "crash" and would be so tired my speech would even slur like someone who was drunk. The only thing that helped when this happened was to just sleep, and sleep, and sleep some more. Again, I chalked it all up to stress.

I put on a few pounds here and there until I was ashamed to look at myself let alone letting anyone else see me. My hair began to fall out. I started getting very large, unexplained brusies. I also began to have to deal with hair growing in places it shoudln't like on my face . Still, I thought it was all due to stress.

During Christmas of '96 I experienced excrutiating pain in my chest and back along with cold, clammy sweat. I finally asked my husband to take me to the ER and was hospitalized with what they thought was a heart attack. I was 39. After all the tests were done I was told that I needed to exercise and watch what I ate in order to lose a little weight. My cholesterol had started to creep up. I just needed to relax and not be so stressed. Okay, sounded reasonable. I tried to do what I was told only to feel so exhausted that I just didn't have the energy to exercise. Shoot, I barely had enought energy to comb my hair let alone exercise. The weight kept piling on and I berated myself for letting myself get to this point. If you look at my gallery you will see exactly how much I changed within a year and half. There is a picutre of me in the beginning that I tried to place after the picture of me on the blue sweater that says 1997 I believe. That picture was taken only a year and a half apart. I felt like such a loser. I was slowly falling apart. I began to go to other doctors to try to get an answer. No luck.

Another jump in time to the year of 2004. I was going up stairs to go to bed when all of a sudden I had the worst headache I had ever experienced in my life. I was not a headache person anyway and to have this hit so hard that I was crying was scary for me. I immediately thought of my sister who shortly before her death had experienced something similar. I was terrified. I drove myself to the hospital since it was just up the street from my house. The ER personell at first were very kind and understanding. A CT scan was ordered and I was told they would be in shortly to give me the results. While lying on the gurney I hear the radio crackle to life stating there was a multiple car accident and they should clear the ER in order to receive the patients. I could hear the nurse speak with the doctor about the patients who were in the ER and I heard them discuss me. They said that if anything showed up on the scan they could always call me back so send me home with meds. The diagnosis: muscle tension due to stress! Again, I trusted the medical professionals and went on my way with a a perscription for pain meds even thought I knew there was something else wrong.

By the next day I couldn't move my head. This lasted for three weeks until I finally broke down and went to my husbands doctor. After an MRI he found that I had a disc that ruptured in my neck. There was no reason for this to happen it just did. In spite of the fact that I felt tired almost all the time and had bouts of insomnia along with problems with my memory I continued to think it was just because I was stressed at work and was getting older.

About that same time I had a muscle to just snap in my right calf. Old age catching up with me I thought. Move on, get over it. Then one morning I get up to go to work and become extremely dizzy. I thought I just got up too fast and proceeded to get ready for work. I was plagued with this symptom all day until finally I stumbled into the wall. I went to the office and called the doctor. He advised me to come in immediately. I assumed I probably had an inner ear infection and wasn't too worried. Everyone at work commented on how red my face was and diagnosed me with high blood pressure. I pooh poohed this as I had never had a problem with my blood pressure. When I got to the doctor's office I was shocked that it was so high it was in what the doctor called " stroke range". He knew that my blood pressure had always ran very low and hospitalized me until they could stabilize me. That began a downward spiral into the bottomless pit of medical professionals who have a mindset of one way to see things. I was placed blood pressure meds and had them switched so many times that I couldn't begin to tell you what I have tried. None of them seemed to control my blood pressure or I had such a bad reaction to them that I couldn't tolerate them.

I kept telling the doctor about my unusual symptoms. Each time he would patiently listen and then tell me I just need to watch what I ate, exercise, and by the way let me give you a prescritption for anti-depressants. I wasn't depressed at that point and refused to get the script filled. Month after month I would have the same symptoms and every time the doctor would explain them away. I knew something was wrong but no one would listen. Then I started to have episodes where I would be so hungry I couldn't seem to eat enough. I would eat everything in sight. This would be followed by bouts of being so nauseated and achy that I did little else but sleep and go to the bathroom. Food had power at all over me. Even when I didn't eat I still seemed to pack on a few pounds here and there. I decided that all I needed to do was be disciplined and follow a strict diet and exerise program. My husband and I agreed to do it together. This was in 2005 I believe. We started on New Years day. He cut out pop and lunch cakes. Me, I cut myself down to 1200-1800 calories per day. The reason the spread was so large was because I knew that there would be days when I would not eat hardly anything and other days I would be ravenous. I figured this way I could manage. I wrote down everthing I ate, walked over 2miles everyday. My husband just did his regular work. No exercise outside of his job. At the end of six weeks he had lost a total of 30 pounds, me, I lost a overwhelming 1 1/2 pounds. Yep, you read that right. A measley 1 1/2 pounds. I was so disgusted. I prayed that God would point me in the right direction

Somewhere during all this my daughter brought me a Reader's Digest book that had an article about a woman who had most of the same symptoms I had experienced. She too had visited many doctors only to be misdiagnosed. As I was reading the article I became excited. I knew God was trying to give me my answer. I began to read on and found that after about ten years and a multitued of doctors the woman was finally diagnosed with Cushings. I began to do my research. During this research I found this site. I couldn't believe the amount of information.

I decided to visit my doctor again and try to convince him to test me. No luck there. I decided that I would find another doctor who would listen. I made an appointment with a female doctor, printed my little Cushings brochure, gathered my before and after pictures and made my way to what I was sure would be successful visit . After all, who could argue with the documentation I had. Oops, I forgot. I had crossed a line that many doctors don't want their patients to cross. I had entered the realm of knowledge reserved for doctors only. Who was I? Only the person to whom it was happening too. How dare I look for answers anywhere but in their office. They were the professional and they had all the answers. I was just reading too much on the internet and I was just a hypochondriac who was looking for a way to explain away the fact that I had let myself get in this shape. This wasn't said to me directly but believe me it was implied. At this point I was so furious I couldn't think straight. Heck, I was having a problem thinking straight anyway, add to the fact that I hadn't slept in over 36 hours and you can see that I probably looked and acted like someone whose head was about to start spinning. I was so mad that I was ready to cry and that is when you need to "step away from the vehicle" because I am about to lop your head off your shoulders. I decided that I would only return to her to get the tests I needed and the results and that would be it. That was in the early part of 2007 I think. Now, we are to the part that I like, sort of.

I finally decided, after talking to others on the boards, that I would go to see Dr. Ted Friedman in L.A. While visiting the boards I made a good freind named Gracie. We communicated with each other and decided that we would go together to L.A. and see this doctor who broke some unwritten law about listening to patients. We met up at LAX and had the time of our lives with each other along with her cousin and a friend of mine. To make this very long bio short I will say it was worth it. Dr. F found a 3mm pituatary tumor and as of now I am on the merry-go-round that we call testing. Just like a carousel horse I have my highs and lows. I still get frustrated that I am not moving as fast as I want but I know that sooner or later I am going to catch the gold ring and be moved to surgery. and hopefully, prayerfully, be cured of this crazy, crazy, disease.