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Alicia's Story

I first started feeling like something was wrong with me about my Junior year in college in 2000. I started gaining quite a bit of weight, 40lbs in 6 months, and I was tired a lot. I also was getting a lot of infections, strep throat, mono, etc.

Around the end of my Junior year, probably one of the worst things that could have happened during my 8 years of illness happened, I had severe psychiatric symptoms at school, including psychosis, and was put on a “students in crisis” plan and sent home for a little while. Being diagnosed as a “psych patient” would delay my diagnosis for years, most doctors just considered me "crazy."

Prior to this time I had weighed approximately 125lbs, was a competitive swimmer, played intramural softball and water-polo, worked as an athletic trainer, attended a private college, and was preparing to go to medical school. I was living life in the fast lane, and it all came to a screeching halt, life would never be the same again.

During my Senior year I decided that it was not a good time to pursue medical school with everything going on, so I applied to Graduate School back home in Arizona. I moved back to Phoenix near my parents and went to school at night pursuing my Masters in Social Work, while working with Autistic children in the school system during the day.

During this time I ballooned up to the heaviest I had ever been 180lbs, and took constant criticism from my family about what I was eating and how much I was exercising. I got so tired of hearing “do you really need a second helping” , even though I wasn't eating any more than I used to eat when I was an athlete, that I hardly went to family dinners any more. I was still getting sick a lot. I caught every cold and flu, especially since I worked in the schools. I also struggled during this time with severe psychiatric symptoms, probably the worst ever in my life.

I saw multiple doctors during this time, sometimes due to changing insurances, and sometimes because doctors didn’t believe me or wouldn’t order tests. I was told many times that “nothing was wrong” with me, even though I knew that there was something seriously wrong with my body.

I then finished my Masters and went to work for Phoenix Children’s Hospital as a medical Social Worker. I loved my job and worked there for about 4 years, but it was long hours, and I was on my feet all day, which I paid for every night! The job was stressful, and emotional, but it was still a great fit for me.

Over time I eventually decided that it was time for me to reapply to medical schools, because working in the Children’s Hospital had reminded me of my love of medicine. I was accepted into the class of 2009 at the University of Arizona College of Medicine. At that time I was my heaviest weight ever, 205lbs, I could hardly do any of the activities I used to do. Sports were definitely out of the question, walking down the street was even difficult. I started out doing ok at school. But fairly quickly it was evident that I was not performing at the level I was used to. I couldn’t quite figure out why. I just thought I couldn’t “cut it” in Medical School, I would later learn that my failing memory and cognititive skills were to blame.

I was seeing the Campus Health doctor quite frequently, for respiratory problems, for infections, and finally I brought up my list of symptoms. She sent me to a Rheumatologist, they did a complete work up for lupus and everything was negative, so my doctor pretty much dismissed my symptoms. During my second year of school I had meningitis, and pneumonia twice during the same year, and was suffering from debilitating migraines.

At this time I had done some research on my own and had some things I had learned from school, and I had kind of come to the conclusion for the first time, that I might have Cushing’s. I asked my doctor about this, and she told me that I “didn’t look Cushing’s.” At this time I weighed about 235lbs, had a red, round face, had lost a lot of my hair, and had a laundry list of other symptoms. After weeks of asking, she finally did order one 8:00am serum cortisol test. It came back normal, so she told me I didn’t have Cushing’s.

At that time, I made the very difficult decision to take a medical leave of absence from school. This gave me two years to return to school if I decided to, because they would hold a spot for me. However, finances got really tight paying for medical bills, because once the end of the term was over I no longer had insurance through the school. So I decided to go back to work.

I actually got a job with the College of Medicine on a grant project with the Family and Community Medicine program as a Social Worker for a clinic for adults with disabilities, which is where I am currently working. Since the job is with the College of Medicine I made an incredibly difficult decision to completely withdraw from medical school. Which means if I ever want to go back to medical school I have to start all over.

Well, I got new insurance with the new job, and since it is a state job it is really good insurance, so I got to try out a whole new set of doctors. The first one I went to came highly recommended, but one of the first things he asked me was not about my symptoms, but if he could call me “FAT.” Then after listening to my symptoms and to my thoughts about Cushing’s he then proceeded to tell me that all I really needed was a “good psychiatrist.” I went home and cried and needless to say, I did not go back to him.

Prior to that time I had found the Cushing’s Help-Support Boards, and I was steered towards making an appointment with Dr. F. I also found a new PCP at the clinic where I work that was amazing. I went to L.A. to meet Dr. F in the middle of January, and while I don’t have any of the test results back, I was so thankful for the opportunity. I felt so validated, and welcome there. Dr. F told me that he was almost 100% sure that I had Cushing’s just based on my report of my symptoms, my medical records, and my exam.

I am still waiting for my MRI and lab results back from my trip, but now I am actually looking forward to the future with hope instead of dread. Even though I now weigh 250lbs, can barely walk, am fatigued all of the time, my cognitive abilities have severely declined, and my vision is poor, at least I am still able to work, and my psychiatric symptoms are pretty much stable and under control.

I am hoping that by this time next year I will be on the path towards recovery!

Alicia was the subject of two Live Interviews in the Cushings Help Voice Chat / Podcast series February 7 and June 26, 2008. Archives are available.

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