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Karen's Story

In my early twenties I started to get, what I called, "sores" on my skin. They were similar to acne or boils. They seemed infected to me, like a bacterial infection. I went to many, many skin doctors and did not get any relief. Sometimes they would go away for a few months. I believe this was the beginning of my Cushing's. I was probably cycling back then. Gosh, I reallly, really wish I could have been dignosed back then. But, of course, I did not have a clue, nor did any of my doctors.

The skin condition cause me to have scars on my arm. My face was infected too. But thank God no severe scarring. I tried everything and went to many different types of doctors. I knew, deep in my heart, back then, that something was wrong that needed to be fixed. I was frustrated, to say the least, that nobody really took the extra effort to find out what was causing this problem. I just lived with my "sores".

In my late 20's is when I started to gain weight. I still remember the day I tried to zip up my size 10 jeans and button them and had a hard time. I could not understand why my belly was getting bigger. The weight gain was subtle, but definitely there. I was an athlete and really, really into exercising. My muscles were solid as a rock. I was an extremely strong and relatively fearless person. I had a job working as a Correction Officer in a prison and was doing well. I played softball, went to night school, did karate, volunteered with Big Brother Big Sister. I had lots of friends, I traveled and skiied. I was living a very full life.

I entered a relationship with a handsome, charming man that was fun but eventually became very rocky and dysfuntional. I ended the relationship in my early 30's and he stalked me. It was mind blowingly stressful. The developing Cushing's Disease did not help the situaion.

In time, that all settled down and I was working and single and doing okay. I got promoted to Sergeant in 1999. My brother died the day I reported to my new Bronx, New York Correctional Facility as a brand new supervisor. It was a stressful time. The new job was challenging and exciting, but hard. I started to gain more weight, despite the fact that I worked out every day. I went to a gym and knocked my socks off working out. I also found a nice cemetery in Yonkers and ran hills almost every morning before work. I still gained weight. It was embarassing because I had to wear a uniform and tuck my shirt in and wear a belt. My body was becoming a stranger to me. I thought I was getting older and my metabolisom was slowing down. I would say to myself, constantly, "This sucks!" When I ran the hills my legs would burn. I felt something was wrong as my leg muscles should have been conditioned after all the time I spent doing the hills.

I had not had a date with a man since I broke off the relationship i metioned earlier. I did not feel confident about my body and myself anymore.

I got transferred closer to home in 2001 and remember my very first day at the new prison. They took a "new employee" photo. I had horrific styes all over my eyes. I looked like a monster and they posted the picture by the time clock for everyone to see the new sergeant. I joined a YMCA in the area and worked out hard. I mean, I was jamming hard on the Nordic Track every day. I barely lost a few pounds.

The styes in my eyes got so bad I had to see an eye doctor. Thank goodness I have good health insurance. The doctor would remove the styes and they would return with a vengance. He finally put me on long term, low dose antibiotics and that controled the acne and eye problems quite a bit. If I dared try to stop the medication, I would get boils the size of golf balls on my face.

I eventually transferred home late 2001 to a brand new 1500 bed men's maximum security prison. I had worked minimum security up until this point. This was a very, very exciting and challenging time for me.

I worked very hard. I stopped working out because I started to get sicker. I developed high blood pressure. My body was a complete and utter alien to me. I kept on saying to myself, "This getting old stuff really, really sucks!"

My primary care physician tried many different medications to control my blood pressure with no results. I went to her every month because of this.

I stopped getting my periods in 2002. The GYN. thought it was just from my weight gain. I developed severe heartburn too by this time. everything was blamed on my weight. I was moody and stressed out. Though, I did have a big "buzz" going on and required little sleep. I was tired but kept my home very pristine. I could be cleaning util 1:00 in the morning and jump out of bed a 4:00am to go to work. I supervised young officers at work and busted my butt getting the new prison up and running.

I eventually got so fat and awkward I signed up for disability insurance through my union at work. I was getting clumsy and fell a few times. I figured I was going to hurt myself soon and would not be able to work. My arms burned when I brushed my hair or skimmed through the clothes racks when I shopped. I got out of breathe easily. I started snoring for the first time in my life. My big fat, red moon face and neck would choke me at night. It wa getting harder to stand up from a sitting position. My legs were very weak. It was awful. I felt like a deformed monster. I was embarassed to face people that new me when i was thin and athletic. A friend that was away with the military for a long time was shocked when he saw me. He asked me if i had a thyroid problem. he was very worried about me. I told him "No. no thyroid problem, this weight gain is all my fault".

One day in late 2002 I told my doctor, while seeing her for my blood pressure, that I felt something was wrong. She listened to me. She said, "Ya know, come to think of it, you look like somebody with Cushing's Disease". She asked me to lie on the table. She lifted my shirt and asked about the strech marks on my belly. She wanted to know how long I had them. I said, "I don't know, my stomach is so big I can't really see them." She said, "No wonder we can't get your blood pressure under control!" It's funny now how I remember every single second of that day. It was an unbelievable, blissful moment for me. I could finally blame my sickness on a disease that had a name.

I had some initial blood work that confirmed the likely Cushing's diagnosis. I was sent to an Endocrinologist and continued my testing. I did two of the urine collecting tests and had 8;00am serum cortisol tests. I had my ACTH tested. All tests came back definitle indicative of Cushing's. I had no problem in that area once Cushing's was suspected. I developed severe diabetes virtually overnight at this point. It was November 2002. I had to give myslef insulin shots twice a day. I had to stop working as I was weak and blind from the diabetes.

A week after my diagnosis, my dear, dear father was diagnosed with terminal brain cancer. It was a time in my life that I never thought could be so painful, emotionally and physically. I had severe stretch marks that were like snakes going all the way up my stomach.They were so sore, they just about were bleeding. I had every text book symptom of the disease. I stopped growing hair on my legd. I started getting hair on my face. My hair on my head started falling out. The cortisol was raging through my body. I was very warm and sweating all the time. My skin lost it's elasticity and was flaking off. My disability insurance kicked in and, I was lucky to not have any financial burdens at this time. It was a blessing in an otherwise very seemingly cruel situation.

I had my first Mri on Chrstmas Eve 2002. I was o nervous. They told me not to open my eyes as I might ruin the test. It took everything I had, mentally to get through that 1st clostophobric and deathly important mri. The radiologist was kind enough, and in a holiday spirit enough to tell me that Yes, Virginia, there is a pituitary tumor!" It was one of the happiest moments in my life.

I waited and waited and did more, "just to be sure" testing. i had a brain surgeon and was all set. he was wonderful, but cautious and I had to wait three long, excruciating months before surgery.

Meanwhile I took care of my beloved, angelic father while he was dying. I was dying, but had a cure. His brain tumor grew rapidly. He was dying without a cure in sight. I was gravely sick. My resting heart rate was 130. I could not walk more than three feet without being totally out of breather. I suffered no pain but was so uncompfortable.I would not wish this suffering on my worst enemy. My father was sicker than me and i had to take care of him. He only worried about me, not himself. Oh, how I fight back the tears now as i recall those days. I was finally a real grown up,learning about suffering, death, loss and grieving.

I had my pituitary surgery on 3/3/03. it was successful and really not painful at all. I developed DI while in ICU and stayed for a week. I sufferd great sorness and stiffness for many mnay months afterwards, about a year. I weaned ogff prednisone in about 4 months. ALL my symptoms reversed. I got my periods back. My blood pressure immediately went back to normal. I no longer needed antibiotics for my famous sores. My diabetes went away within a few weeks time. I lost weight, eventually, without even trying. I went back to work three months later and was promoted to Lieutenant within a months' time. My family and co-workers were extemely supportive throughout. I was again blessed in that sense. My beautiful father passed away September 16th, 2003.

Today, I am 40 years old and cured. I am feeling very well. I cannot emphasize enough how sick this disease got me and how much better I am now after surgery. I feel normal again. My body is mine again to take care of. I remeber being in public when I was so deformed and obese. People ignored me. It was a huge learning experince for me. A life altering lesson of strength, courage and faith.

I have to end with this, probably most important message. It is to Mary O. and her dedication, patience, personal strength despite illness, and giving. Without this website i would have been LOST. this is the only place I got answers and complete understanding. Nobody else, try as they might, really understands what we cushies go through. So Mary, from the deepest part of my heart I thank you. I thank God for you.

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