In high school, my psoriasis covered me from head to toe. Due to my age there wasn’t many treatment options for me to chose from outside of light-therapy, topicals, and occlusion. Occlusion required me to stay in the children’s hospital overnight, 3 weeks at a time. The steps were as followed:
A hospital stay for occlusion
Step 1: Around 6am a nurse would come get me and take me upstairs to dermatology. I would first do light therapy. This is where I stood in a UVB light box for a prescribed amount of time. It usually started off from secs and increased over time.
Step 2: From there I was slathered down in a tar cream, place in a set of pajamas, the pajamas were then soaked down in water, and I was placed in a plastic suit, similar to the ones you see people exercising in.
Step 3: I set in this suit for 8 hours each day excluding weekends.
Since I had to go through this process 5 days out the week, my insurance paid for me to stay in the children’s hospital. This stay really gave me a different perspective on life because there were so many kids who were on the brink of life. I had my own struggles, but there were children way worse off than me, including a friend I met while there, her name was Amanda and she was my hospital next door neighbor.
You’ve got a friend in me
Amanda had had a kidney transplant and the doctors needed to monitor her to ensure her body wouldn’t reject it. Her family lived far away so she rarely had visitors and was usually by herself. A nurse on our floor introduced us and Amanda and I became inseparable.
One night we were in her room and started watching a movie called “Dirty Dancing.” We came across a scene were people doing a lot of grinding, dry humping, and gyrating. Amanda looked at me in astonishment and asked, “What the heck is this?” We started to giggle so hard. Her reaction was hilarious.
We also exchanged stories about our health challenges. Amanda shared a picture with me of how she looked prior to the kidney failure. At that present time her face was swollen and her body looked bloated, but that wasn’t the case prior to her kidney issues where she was a 100 pounds lighter, but due to her health condition, her body retained a lot of water weight.
One of my Aunts who worked in the hospital would come to visit me and she eventually became close to Amanda as well. We would all go to lunch together. Amanda even made my Aunt a purple bracelet which represented friendship. Well, my treatment time ended, and Amanda was scheduled to go home soon. We parted ways but promised to keep in touch.
A life lost too early
Months later I received a phone call from my Aunt who revealed Amanda’s body had rejected the kidney and she had passed away. I was devastated, especially because although I thought about her, I didn’t keep in touch like I had promised. I never had the opportunity to share with Amanda how she influenced my life while in the hospital. I sent her parents a card giving them my condolences, and informing them how much of an influence Amanda had on my life.
It amazes me how her and I both had to deal with health conditions at such a young age, and although they were both different, we shared so many of the same struggles when it came to self-esteem, struggles at school, and challenges with finding a permanent solution to our health conditions. I wish Amanda could have stuck around to enjoy life a little bit longer.