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Hi! My name is Donna and I am writing to you from Dallas, Texas. I am recovering from Cushing’s. I suffered with the symptoms for many years. I know I started showing signs of it in late 1999. I started gaining a little weight, not a lot but enough to show on my 4’11” frame. In September of 2003, my family doctor told me I needed to start watching what I was eating. My blood pressure was a little high and I was a little heavier than I should be. I have always preferred salads and low fat meat. I exercised 4-5 days a week. I have done this my whole life.
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Normal Appearance |
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By 2003 my blood pressure was high, my weight had increased even more and my cholesterol was real high. My family doctor put me on blood pressure medicine and cholesterol medicine. It helped for a while, my cholesterol dropped but my blood pressure stayed the same. I was tired all the time.
In January 2004 my father suffered a stroke and that led to open heart surgery. He had been sick for many years. This was very hard on him and me. He was the only parent I had left, I had lost my mother 5 years earlier. I was starting to get very irritable and I was always angry. I was really starting to swell and it looked like I was pregnant even though my eating habits had never changed. I shrugged it out to stress because my father was still in the hospital and went into congestive heart failure a couple of times. In April 2004 he finally went home. I was starting to get a real red color to my face. I went back to the doctor that summer, I had put on 20 more pounds and my blood pressure was higher so I was put on diet pills and more blood pressure medicine. At this point I knew something was wrong and I told him so. He still said I was eating too much. I was still busy taking care of my father and still working despite felling tired all the time. I was starting to have a really hard time breathing. I went back to the doctor and he told me I really needed to stop eating. I was still not eating heavy and I was exercising and taking diet pills. He prescribed some prednisone to help me breathe and gave me a script for Celexa. He told me I was more than likely depressed and this would cut the craving for food. I was always so thirsty and I could not sleep most of the time. The mood swings were getting worse. I was always tired and sluggish. About this time I was always so hot and was sweating all the time. I had the windows open in 32° weather and still was hot. My periods were starting to go crazy, I would not have a period for a month, and then I would have one for six months. I was starting to feel really bad. Through this whole time my husband, Michael, stayed by my side, I am sure it was very hard for him at times.
2005 did not turn out to be much better, I was avoiding going to the doctor because I knew what he would say to me. “You are too fat and your blood pressure is too high”. I was ashamed of myself, I did not like to go anywhere but I still did go to work. That was the place I could go and be busy. Not think about a thing. When I got home at night I was always so tired but I could not go to sleep before 12:00am, then I would get up at 3:00am, and a couple hours later I could go back to sleep, but by that time it was time to get up and go to work. I did not look well at all, dark circles around my eyes and my face was red and puffy. I was so round now, but my arms and legs were still skinny. In June I lost my father. I was so tired and stressed at that time. After all that stress I went to the doctor in October. I walked in and he shook his head. I was even fatter. I now was thirsty all the time and always had to go to the bathroom, which at night led to less sleep. I started staying home more. I did not feel good, felt tired, fat, and angry. I did not want anyone to see me and I did not want to see anyone. I was so depressed I had lost my father and now was losing control of my life. I thought to myself, “If I am dying I sure wish it would be soon.” I did not want to live this way any more. I was contemplating running into a wall in my car. I was that down.
2006 was ok. I was not under as much stress. I had learned to just deal with it. I somehow managed to avoid the doctor most of the year. Since I had refills on all my meds I did not have to see him. I was home more now and I was watching TV more. I started noticing these commercials for Relacore. The commercials explained that belly fat was caused by stress. Well I looked just like the picture on TV. I was feeling really bad at this point. I was having a real hard time dealing with things and I even needed help getting out of bed. I could not move that well. My husband had to pull me up so I could get up and take a shower. I would take a couple showers a day because I was sweating so much. My hair was never dry. It was an effort to walk to the car and into the building at work.
We are dog lovers. One of my dogs (Sadie) started getting sick, one more thing to do. I took her to the vet and found out she had diabetes and started giving her shots. She was going blind and she was hard for me to take care off. Finally in October 2006, I was tired of living this way all the time. I went back to the doctor. I was having a really bad day and was up to 190 pounds. My blood pressure was high, my pulse was racing, and I felt horrible. He started the same routine about me being too fat. I told him there is something wrong. I have never been so sick in my life. I stripped off my clothes and showed him my arms and legs. He finally agreed with me something was wrong. He ordered some blood work. I asked him if he was testing for Cushing’s and he said yes. I told him that is what I had. He said it is a rare disease and he did not think I had it. I knew at this point I had it because I had been studying up on it and I had most of the symptoms. Five days later in early November the doctor called me and confirmed I had Cushing’s. I was so relieved to know I was really sick and not just crazy. My levels were 5 times what they needed to be and I was sent for a MRI the day after on a Friday. Tuesday I got the results and there was a spot on the MRI. I finally told my father in law first. I thought this may be too much for Michael to handle, knowing his wife had a brain tumor. I finally told him and he was a nervous wreck from then on.
My family doctor directed me to a neurosurgeon, Dr Bruce Mickey, in November. My friend took me to these appointments and I was so glad she went with me. I was real scared and could not handle much more by myself. I was excited to meet the doctor and his team. He wanted me to get another MRI, one with dye this time. The tumor showed up even more than on the other. I met an Endocrinologist, Dr. McPhaul. I wanted to have the surgery and get it over with as soon as possible. I wanted to get better now that I knew what was wrong.
The holidays of 2006 were bad but I got through them. By that time I weighed close to 215 pounds. I could not sit up by myself nor could I bend over to pick up anything without losing my breath. In January I had a 24 hour urinalysis and a petrosal sinus sampling, that was the worst so far, but they confirmed size and location of the tumor.
February 2007 I had my surgery. The surgery went well but when they were taking me off the vent my lungs collapsed and I stayed on a vent for 7 days in ICU. When I finally woke up on Saturday, I asked my husband, "Which dog died?” Sadie had died. I was so close to death myself I knew. I stayed in the hospital for 9 days. When I got to go home I was so not ready to take care of myself and had to depend on my husband. I went back to work too soon and could not work full days and had to go home early for a while. While I am working all the time now, I still have days I can hardly move from the pain in my body, but I keep going. During the summer I started working out again. I feel so much better now. I can go to step classes two days a week, and work out. I am down to 135 pounds. I still have some pain but working out helps.
June 11, 2008, I had another Brain MRI and it came back clean. I am not taking cortisol anymore. I wish this had not happened but it did and I am a stronger person. Recovery is so long and hard. Most days are good but other days are hard with the headaches and pain in my body. Hang on and enjoy everyday, they are real blessings. I know, I made it, and I know you can too.
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