Fighting the Worst Disease You've Probably Never Heard Of

I've never been so relieved to hear two words in my life...Cushing's Syndrome. What's that you ask? It is one of the most horrible diseases in the world and I am one of the rare few who has it. We finally figured out what is really wrong with me and I will be forever grateful to my endocrinologist and surgeon for caring so much about me to dig into my situation. Here is my story for anyone who thinks they may be suffering from this too. It steals your body, your life,your mind, and your self esteem.

I believe this all started last summer of 2010 when I noticed I had gained 10 lbs out of nowhere. I thought it was pretty odd considering I hadn't changed my eating habits or exercise routine. A month later we found out we were pregnant and were so excited!! This turned out to be the worst coincidence of my entire life. I never felt right from the start of the pregnancy. I was insanely hungry and gained 25 lbs the first trimester...not normal. I was extra lethargic and could hardly move some days. Ryan spent most of his time entertaining himself because I was so fatigued.

I noticed that by Christmas I had gained over 30 lbs and was swelling up like a balloon all over my entire body. This was not normal pregnancy swelling, but my OB assured me things were fine. At this time my blood pressure was still OK. I was getting to the point where I could not lay flat, turn my head, or sleep (I hadn't slept since I got pregnant) because of all the fluid. My heart started racing out of my chest. I thought I was having anxiety attacks. I was miserable. My belly was geting bigger and bigger, I thought just due to pregnancy, but it looked odd and I had huge purple stretch marks all over it and on my arms and thighs. They didn't look like regular pregnancy stretch marks, but no one ever mentioned their oddity. I also was developing a hump on the back of my neck and my legs were so weak I couldn't hardly lift them, much less squat and get back up.

By January I was really sick. I almost passed out in Walgreens the morning of Jan. 6 so I called my OB who sent me to the hospital. I was admitted with low potassium levels. My heart was still racing out of my chest and my BP was 167/111 when I was in triage. I was so scared. I spent a week in the hospital with every high risk OB/GYN and Internal Medicine doctors calling me a mystery case and telling me there was nothing wrong with me. I was even told there may be something wrong with my kidneys. I was tested for preeclampsia which was negative, pumped full of potassium and sent home. Mind you, I was still not sleeping, having panic attacks, swollen up bigger than Shamu the killer whale, full of weird marks, weak as all get out, and miserable....but there was nothing wrong with me. No one was ever able to tell me why I was losing potassium in the first place.

Six weeks later things things took a horrible turn. I was still not sleeping AT ALL and was almost completely psychotic. I had been seeing a counselor since I got out of the hospital in Jan. because everyone, including me, thought I was going crazy. I had visited my parents on President's Day weekend and like to have not made it home alive. I stopped at a convenience store to use the restroom and by the time I got back there, I was so short of breath that I was afraid I wasn't gong to make it back to my car. I did make it, picked Ryan up at my sister's house, and somehow made it home. The next 2 days I was so panick-stricken that I had to have Mike stay home to take care of Ryan. I couldn't. Wednesday, February 23 we went to Centracare because I had developed a nasty cough which I thought was bronchitis. I could barely get into the car the panic was so bad. My oxygen level was 81% so they rushed me to the hospital by ambulance. My chest x-ray was completely white and my lungs were completely full of fluid. I was in congestive heart failure and on 100% oxygen. I was in Cardiac ICU for 2 days and then transferred to a regular room. I was on oxygen and being weaned off of it for another week. I made a good recovery from the heart failure. They ordered a CT scan where they found the adrenal tumor, but never addressed it or referred me to an endocrinologist. This entire time, Patrick was on 24 hour monitor and was doing just great. I was put on all kinds of meds to controlmy heart, blood pressure, etc. I was sent home on March 4 breathing on my own and on over 20 pills a day. I was officially diagnosed with Peripartum Cardiomyopathy.

I spent the next week and a half going to every doctor under the sun. It was quite stressfull and busy. Then, another huge blow that changed my life forever. On March 14 I went to my high risk OB appt. and ultrasound. We were devastated to learn that Patrick's heart had stopped. I have never felt so awful in my entire life. I was induced that evening and Patrick was stillborn on March 15, 2011. He was 3 lbs. and 16 inches. He looked exactly like Ryan! After his birth, my cardiologist changed all my meds to the stronger ones. I left the hospital after a few days and we had the funeral on March 23.

The months after Patrick's birth have been rough. I have never felt like myself and thought it was just part of the recovery process. I never got my energy back and my belly has not gone away. I enrolled in a cardiac rehab exercise program, but haven't lost any weight. I have been eating healthy and everything. My symptoms really started to get worse around late October. I really started to notice the extreme fatigue setting in, the swelling, my hair thinning and becoming dry & brittle, my nails breaking, and I still have this giant belly with huge purple stretch marks. My eyes are blurry and my skin is so thin that I bruise when you touch me and bleed easily. I still have a hump between my shoulders and my muscles and bones just ache constantly. I can barely walk sometimes because my knees are so weak. My cardiologist recommended that I see an endocrinologist because I told him I still felt awful and am still not sleeping well.

I made an appt. and was blessed to get into a brand new endocrinologist. She took one look at me and said she thought I had Cushing's Syndrome. I had never heard of it before. She had me to 2 medical tests and they came back very positive for the syndrome. I was thrilled to finally have an answer to my problems. I am scheduled for a right adrenalectomy tomorrow morning and am so excited. I have never been so excited for surgery in my life. It will be a long road to recovery with my body having to withdraw from all of this excess cortisol. I am ready for whatever comes my way. I am so ready to be myself again. This has been the worst year of my life and I pray no one has to suffer like we have.