The thing I remember most about growing up is being sick all the time. It was usually the topic of conversation with my parents, teachers, grandparents, doctors, etc. No one ever knew what to do. I never made it to a full week of school throughout my entire school years. Usually by Thursday I would be so exhausted I just couldn’t make myself get out of bed. I would spend from Thursday to Sunday recuperating and then be back to school on Monday to start the cycle again. Being sick became my lifestyle and I got used to it. I began to mature at a very early age. I started my period in the 2^nd grade, which was accompanied by pneumonia. My menstruation cycle was irregular at first and then became regular in the 3^rd grade when I was 9 years old. I developed severe acne about this time, which continued, throughout my teenage years. I also had horrible hirtuism that started appearing the same time. Needless to say, I felt like a walking disaster. By the time I was in 5^th grade I reached my final height of 5’9. I felt like an 11-year-old trapped in a 25-year-old woman’s body. I was often treated much older than I was because I looked so much older than my classmates. This added a lot of responsibility and stress to an already stressed out 11-year-old girl. I was never really able to act like a "kid".

Junior High years are awkward for almost all kids, but my feelings of not fitting in became almost overwhelming. I missed more and more school because of illnesses and probably because of depression. My self-image and self-esteem were very low. I started to feel like maybe it was all in my head, maybe nothing was really wrong with me. It was about this time my mom watched a report they did on a news show about non-classical CAH. My brother and I fit every sign. We went into see Dr. Rawlison at Primary Children’s at the University of Utah. As I said earlier, I have two maternal cousins with classic CAH, and he was their endocrinologist. Sure enough, we were both tested and we both were diagnosed with non-classical CAH. I was put on .5mg dexamethasone and 15mg hydrocortisone. I didn’t feel much of a change, except that I had started to gain a lot of weight. I had battled with weight before, but when I was put on the medications it became much more of a significant weight gain. I gained a lot of weight from the ages of 15-18. At the age of 19 I started only eating once a day and took my medication about once a week. I did this for about a year and a half. I lost about 60 lbs. and as soon as I began eating normally again I gained it back plus more. I also was very sick and very weak most of the time.

I was still dealing with many illnesses. When I was 18 I came down with viral meningitis and ended up in the hospital for about a week. If I got a cold, it would take me about 2 weeks to get over it. Nothing seemed like it had changed. I was often taking high stress dosages of my medications (50-100mg hydrocortisone) to battle illnesses. I saw an endocrinologist about 3-4 times a year. My levels were consistently high. Nothing was helping. I was beginning to think it was basically hopeless.

bilateral adrenalectomy and was doing extremely well. I wondered if this could be a possibility for me. We went over my lab work and blood tests for the past couple years. He understood my frustration and he felt that a bilateral adrenalectomy would be a good option for me. I was ready to do anything at this point. I felt like maybe this would be the answer I had been looking for. I made an appointment to consult with the surgeon and we set the date for surgery on September 6, 2002. I had a CAT scan done a couple weeks before the surgery to make sure my adrenal glands were accessible to the surgeon. Everything was going well and I felt very confident about the choice I had made along with my doctor.

The surgery went well without any complications. It took about 6 hours for both adrenal glands to be removed. I remember waking up feeling as if I had been beat in the stomach with a baseball bat. I felt very sore and miserable for about a month. I couldn’t sleep, I had no appetite, and it hurt to even move. I took stress dosages of hydrocortisone for about 3 weeks and then went down to a maintenance dosage of 20mg per day.

Since the surgery I have noticed many changes. The most promising thing for me was that I started my period one month after surgery! I have been having them regularly since. The hirtuism has become less of a problem and I just feel more relaxed. Before the adrenalectomy, I was not a salt waster. I have been getting use to being a salt waster now and dealing with being able to stay hydrated in the hot summers of Utah. I do feel tired a lot more than I used to, but I am hopeful that this will become less of a problem as time goes on. I am still getting used to all the changes my body has made, especially hormonal changes. I feel a lot more emotional that I used to, and cry more at sad movies. I suppose you could say I feel more like a "girl".

I am happy with my decision to have an adrenalectomy. I am not saying that everyone should rush out to their endocrinologist and schedule for surgery. It was an individual decision that I put a lot of thought and prayer into. I also know that nothing will ever "cure" my condition. I basically traded one condition for another, but I was willing to do that. I have learned that doctors will not always have every answer for my condition, so it is up to me to become educated and knowledgeable about my own body and what it needs. I have also learned that for me to be able to overcome my weaknesses I must be in the best spiritual, mental, and physical health I can be in. Without my faith and trust in God, I don’t think I would have been able to make it this far. I am hopeful for a long and happy life. I look forward to someday having children and teaching them the patience and perseverance I have learned from my own experiences. Most of all I have learned that having this condition is a part of my life. It doesn’t have to be my life. I do have a life beyond being sick and I am going to be out there living it!