I look in the mirror and I don't even recognize myself. I am experiencing the physical, mental, emotional, spiritual, psychological effects of this wretched disease. I displayed the classic physical manifestations of Cushings; the moon face, hump on the back, acne, weight gain that produced stretch marks all over my body, especially around my core with very skinny arms and legs, frizzy falling hair, emotional highs and lows, and fatigue. My doctor said it was a miracle that I was still able to care for my children as I should not have had the strength or energy to walk across my room. Not only did I not recognize myself, many people, that I interacted with on a regular basis did not recognize me. One day I picked up my daughter from school early. I walked up to the receptionist desk and stated that I was there to pick up my daughter early and gave her name. The receptionist responded by saying that only her mom was authorized to pick her up. I reminded her that "I am her mom." the receptionist looked very shocked. She couldn't hide her discomfort. She asked for identification and other identifiers that would let her know I was Sabrina's mom. I broke the ice and explained to her what I was going through. When I attended church, people I fellowshipped with for years would walk right by me, not recognizing me. I felt like a freak.
From the day of my diagnosis, I basically waited for arrangements to be made to get to National Institutes of Health in Maryland to participate in a Cushings study, and then to Michigan to be treated for Cushings which would also include some research projects. The medical community wanted to learn more about Cushings because many people died, the majority of which were women. They were consistently told that their symptoms were all in their head and they would go home and eventually die from the elevated cortisol.
I met my brother and my mother in Orlando. Can't recall how I got there from South Florida, but I do remember the drive. It was very bouncy, and I felt like Clifford the Big Red Dog. I'm not sure why I felt so BIG. When we arrived at my cousin's house in Orlando, I walked in, and my mom didn't recognize me. She asked, "where's Sabrina?" and my brother said right here in front of you. Her knees buckled and my brother had to catch her from falling. She collapsed, and I ran and hid behind the couch until it was time to leave.
Somewhere between Orlando and Maryland we stayed the night at a hotel. All I remember is that I couldn't sleep. I kept laughing and my mom got really upset with me because I was keeping everyone awake. I don't remember falling asleep, but I recall waking up in the morning when it was time to finish our drive to Maryland. We arrived at National Institutes of Health. I got checked in and set up in my room. The stay was for 30 days. I was on 24/7 surveillance. I recall being on a high floor and I would look at the window and have thoughts of jumping out, but I never thought of hurting myself. I imagined if I jumped, I would be able to fly and land where I chose to land. The thought came and went until we got involved in other things and then I forgot about it.
I don't remember my stay play-by-play, but I will never forget some of the things we did there. Of course, there was the medical aspect of taking trial medications, having imaging and procedures done, and blood drawn, but outside of that, we had to get dressed every day. We were not allowed to stay in our hospital gowns. We did art projects. We were involved in various planned events such as movies, music, etc. The most interesting part was our group meetings. There were about 50 cases of Cushings in the US at the time, and we were all there, gathered at the National Institutes of Health.
And then it was time to go to Michigan. My brother and my mom arrived to pick me up. The nurse was working on my discharge when my morning bloodwork came back showing that I was in adrenal insufficiency, and I was having symptoms on top of the bloodwork being out of range. I believe the excitement of leaving, along with the cortisol suppressing medications I was taking, may have contributed to the shift in my cortisol, not sure. I was given a stress dose of Hydrocortisone by injection and left a few hours later, once it took effect. Next... Read Removal of Adrenal Glands
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