The Saga: Part 8 - Something you've never heard of

Of course, the immunosuppressants I was on did their damage. A week before I was scheduled to go to Oregon, I got a couple blisters on my eyelid that looked a little odd. I had been on the lookout for anything unusual because my doctor told me that I might catch something “strange” and told me that I had to live like I had HIV. Luckily, I didn’t often stray far from home so it wasn’t too hard to avoid people. As I was leaving for a week, I decided to go to the dermatologist, Dr. Dotz, before I left just to be safe. He was very alarmed and told me I either had shingles, herpes, eczema or impetigo. I didn’t even know it was possible to get herpes on your eyelid. Although I got a laboratory test done that would come back with results in a week, it was really important to treat shingles and herpes immediately because if they travel into the eye and into the cornea it is possible to go blind. I went to the ophthalmologist (they saw me RIGHT away so I knew it was serious) and they told me my cornea looked fine. My ophthalmologist told me to call right away if a sore appeared on the end of my nose because the nerve in the eye connects to the tip of the nose and that would be a sure sign of shingles. Dr. Dotz told me that he didn’t think I had shingles because it hadn’t dramatically spread, so it was my call if I wanted to take the huge dose of antibiotics used in the first 72 hours shingles symptoms appear to lessen their severity. After 72 hours, there is no point and shingles runs its course to the fullest. I decided not to take the shingles medication because antibiotics are absorbed in the intestine and can make UC much worse, even increasing the likelihood of catching C-diff, a severe bacterial form of Colitis that can be fatal if it is not treated correctly. In addition, it never leaves the body once you get it and can come back if you take serious antibiotics. My friend Ghislaine got it once and from then on every time she took antibiotics for strep throat, which itself is made more likely by taking immunosuppressants. It’s a vicious cycle. C-diff was also included in the almost-lethal mix my dad contracted two years ago, so I’m scared sh*tless. Bathroom humor! Anyway, Dr. Dotz cut the blisters open to take a sample for lab tests and then had me on a regimen of putting on various creams up to 9 times a day to treat my eyelid in case it was actually eczema or impetigo. It was an extremely sharp stinging pain that made me go slightly crazy. At the same time, pain like that simply doesn’t compare to abdominal pain because it doesn’t rip you from the inside out. A week later I got the results back, and I indeed had herpes on my eyelid. When I went back to make sure the coast was clear, Dr. Dotz told me that “we” had “done some good work.” He later told my dad that he had been really worried about me and I had “dodged a bullet.” I was lucky! Clearly, the team of doctors I had in California was truly excellent. I felt like my doctors really cared about me and were invested in the future of my health.

I also suffered from terrible insomnia with prednisone. The second time around (my first 10-week course had been the summer before) I had insomnia but didn’t have the incredibly energy or acne from the first time. Thankfully, my moon face didn’t get too moony either. After two weeks of not sleeping or sleeping one to two hours a night, my mom made me call Dr. Hosseini and tell him I was having a side effect. Sometimes I really needed other people to prompt me to take care of myself. Unfortunately, I couldn’t just stop taking prednisone because, other than the fact that it saved me from an extended one-month hospital stay (Dr. Hosseini threatened me with that when he was trying to get me to do a picc line), it has to be slowly decreased to prevent withdrawal. Sometimes I repeat myself in my blog posts because I doubt many people, other than my biggest fan George, read them all. Thanks George. So Dr. Hosseini wasn’t at all surprised and prescribed me with some Ambien. After a month it didn’t work as well so I had to alternate it with benadryl. Luckily, I had friends studying abroad in many different time zones of the world so someone was almost always on skype or gchat. I also didn’t have any events that I had to be super alert for and I wasn’t functional anyway. A few weeks later, as I decreased prednisone to more manageable levels, I was able to get to sleep all on my own.