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I was born and raised in a small town in SE Alaska, where my twin boys and my daughter were also born. In 1982 I was 110 lbs. which was my normal weight, but by 1983, I was gaining weight and a dark cloud had settled over my mind. I dieted and exercised, but continued to gain weight. I went to the doctor and he asked about the stress in my life. That was my first encounter with the medical field trying to pass off the first of a long list of symptoms as stress and not believing me when I said I ate the right foods and exercised and still was gaining weight. The doctor also suggested that I talk with a counselor or psychiatrist about the stress in my life...I knew I was living with stress, but deep down I also knew that it was more than that. I experienced what I can only describe as mental outbursts, with no reason and no control. This scared me to death and I sought medical help again...only to be told to read a book on how to control the stress in my life. I had episodes of sheer panic, was afraid to answer the phone, and had a strong desire to hide in the closet and escape from the world around me. I knew this was not normal behavior and tried very hard to focus and act like I knew I was supposed to act. I tried so hard to live and do the things that I needed to do. I was teaching painting classes at the college, painting items to sell wholesale to retail stores, and dealing with the activities of raising young children, Cub Scouts, Brownies, etc...but inside I was physically and emotionally falling apart.
I was put on thyroid medication and I was having a lot of difficulty with my menstrual cycle. The symptoms escalated over the next 8 years: depression, terrible bruising, facial hair, high blood pressure, fatigue, weakness, headaches, confusion, memory loss, and the hardest to endure was the constant weight gain...all classic signs of Cushing's. My family and I were living in a world that didn't make any sense and was very difficult. Over the 8 years, I went to many doctors in Seattle, all to no avail...BP medications, many variations of hormones, but nothing helped. After 6 years, I saw an endocrinologist in Seattle, who was convinced that I had Cushing's, just from looking at me, but after the MRI was normal and my cortisol was just double the norm, he sent me home, recommending an antidepressant. I declined the antidepressant because I felt that if he could identify the cause of my symptoms, I wouldn't need the antidepressant. I was devastated that he didn't want to pursue things further.
When I returned to Alaska, I went back to work at the hospital as a Certified Nurse's Assistant, where I had been working for the last 3 years. I found my job to be very physically and emotionally stimulating, but it was all I could do. I did my job well and just crumbled when I got home. The lack of a diagnosis and treatment slipped me into depression and everything felt so hopeless. I thought about suicide, but because of the love of my dear family and friends, and my faith, I did not. Instead, I sought out alternative medicine, which I did for two more years, but I realized that I just wasn't getting any better. By that time, I was allergic to almost all food and existed on bottled water, rice, and a few fresh vegetables. I got violently ill flying on airplanes, presumably due to the recycled air.
Finally at my wits end, and with threats from my hometown doctor that he was going to physically put me on a plane to Seattle again, once again I went south. My dear Mom went with me on ALL my medical trips and had to endure my constant search and disappointments. She stood by me, organizing everything and made sure all my needs were met. On my birthday in April 1991, when I was close to 200 lbs., I was finally diagnosed. I was so happy to know I wasn't crazy that the thought of surgery at the base of my brain was welcome. I still had a normal MRI, but very high cortisol levels, and a petrosal sinus sampling test confirmed my pituitary tumor.
After surgery, I did not respond to treatment. It took me 3 1/2 years to get back on my feet. I couldn't work, couldn't even clean my house or do much of anything. My boys graduated in May of 1993 and I moved south in August so that I could receive constant medical help. My marriage of 24 years failed and I found myself living alone and away from my family. Slowly, after another sinus surgery, hysterectomy, and a couple of other hospitalizations, I started feeling better, and my weight started coming off. In 1995, I went back to school, to see if my brain still worked. I graduated at the top of my class which was a real boost to my self esteem, but a physical was required for the job I wanted and I could not pass the physical. I went back into nursing and loved it, always did, but in a year I knew my tumor was back. Symptoms that had disappeared began to come back. My adrenals were removed in December of 1996. I am not out of the woods yet, as I still have to adjust to life without adrenals, and still have a tumor in my pituitary.
Despite all the horror that goes with Cushing's, there is a lot to be thankful for. I learned that no matter how bad things got, God always sent someone or something, a circumstance or a phone call into my life to let me know I was not alone. I had anger to work through at various times, but I learned that the anger was going to kill me if the disease didn't, so I made peace with the anger and moved on. I found positive things in my life to focus on. I decided that I did not want to die an unhappy person and that I was going to spend whatever time I had left doing the best I can. I think people who go through diseases like ours have two choices; 1) give up and let it get us, or 2) fight for our lives and don't waste our precious time or energy on negative things. We, better than anyone else, know how precious life is. We have to grieve for our losses, our jobs, our marriages, our hurts, for the years of suffering, and the impact it had on our families, but then we have to realize, we did the best we could with what was happening at the time. We are not to blame for having the disease. We can only make amends and forgive ourselves, and make the most of the time that we have. We may not be able to do what we used to do, we may not be able to do what we would like to do, but we can do those things that we are able to do..it may be different, but life is about change, and we can find new enjoyments and new paths that we may never have taken if not for Cushing's. I have met some really wonderful people that I would never have met. I have learned a lot about myself and have realized that I am a much stronger person than I thought. Even though my body has betrayed me, my spirit has prevailed. We are survivors. |
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