A Dark Place
After 3 months of being hopeful, reality came crashing down in January. I ended back in RUH emergency (basically my second home at this point) as the Remicade infusion treatments were no longer working. I was exhausted. The abdominal pain was back in full force which led to many sleepless nights. I was losing my hair in massive chunks due to the treatment and stress. The physicians decided to try the Remicade infusions more frequently in hopes that would keep the Colitis flares at bay.
For reference most people with Colitis can stay in remission with minor medication and keeping diet and stress in check. I am a very rare case that these drugs and treatments did not work. -My mom always said I was special!
Arms Full of Scars
I was anemic again but not low enough for another blood transfusion. I was discharged after 4 days, back on prednisone and went to the infusion clinic for another dose of Remicade. Being anemic it was extremely difficult for nurses to start the IV. It took them 9 painful tries to finally hit a vein and I came very close to passing out. My arms have permanent IV scars, but they remind me of how far I’ve come.
Downward Spiral
The prednisone calmed the flare again, but after the 8 weeks were up I spiraled into another flare. This was the worst yet. I had zero energy. I was back sleeping 1-2 hours at a time and would crawl up the stairs in the morning. The pain was excruciating. I was severely anemic and pale; I hid it well. Every morning I would paint my face with foundation and bronzer to make myself look alive. I would go to school and fake a smile. I’d pretend nothing was wrong, pretend to care about assignments, pretend to be happy. This disease is invisible.
Now, the end of February, I would lock myself in my room and just lay in the dark and wish the pain away. Over a year of pain, treatments, disappointment, exhaustion, weight gain, weight loss, anemia, no answers, no solutions. Why wasn’t anything working? What was my next option? Was there another option? How much longer could I live like this? Dark thoughts entered my mind and it scared me.
All I wanted to do was sleep, but I couldn’t. Too much pain, dashing to the bathroom, frustration. If my Mom hadn’t forced me out of bed and back to RUH on February 27th, I would have died within that week.
Dance with Death
Back at the hospital I was put in a private room that used to be a broom closet -at least I was alone. They gave me 4 injections of Humira, 2 in the leg and 2 in the stomach. These were extremely painful. After that, not much was done. No tests, scans, scopes, nothing. My mom finally ran into a resident ( I’ll call her Dr. “Angel” because that’s what she is) in the hallway. We had dealt with her on a previous stay and Mom pleaded for her help. She immediately agreed and ordered some blood work. By this time I had a fever and was having a hard time staying conscious. They came back and took my blood again, which seemed strange as they were taking a lot and I knew I didn’t have excess to give. Dr. “Angel” came back but this time she wasn’t alone. I was septic. They wanted to operate that night, but I was too anemic. They scheduled the operation for the morning and I spent the night under close observation, receiving multiple blood transfusions so I would survive the surgery. My mom slept on a cot beside me. One chapter was ending but another tough journey was about to start.
Part III coming soon.