Those of you who know me or have read my book or heard me sing this song know I am NOT fan of prednisone, but I do acknowledge that it has saved my life 3 times now. Maybe 4, if you count this week. Because,
holy
canoli you guys, I got the WORST rash from taking this new medication for mood regulation (I have severe insomnia- was staying up til 7 or 8am tossing and turning).
Here's some "disease porno" of the rash for you:
I think it was Shakespeare who said "the cure is worse than the malady." This hot red rash covered my whole body, and I've been so exhausted all week.
Sunday/ Monday: Before the rash showed up, I thought i was getting the flu. Tired, confused, sore throat, feverish. Wandered around town for a half hour in 27-degree weather in a sketchy neighborhood at night after misplacing my car Monday night. I had gone to acting class even though I didn't feel up to it. I didn't want to miss it because it was the night we were getting paired up with our scene partners and getting our long-term project handed out. And again, those of you who know me, you know I won't skip something I've committed to just because I don't feel good. I did a gig after having a stroke, for God's sake. I took extra vitamin C and some Umcka, a homeopathic cure I always take when I feel like I'm coming down with something. Works great.
Tuesday: I noticed the rash on my leg. I was very tired, but I dragged my sorry butt to an event I had didn't want to miss- Ron Culberson, President of the National Speakers Association doing a great talk on humor. It was a 15-minute drive but I had to get a ride- didn't trust myself to drive. I felt like i was going to fall over in my plate of 2-star chicken marsala. I recorded the thing on my iphone so I could hear what I missed later. People kept asking if I was OK. I got home and went right to bed. I had to have my husband literally push me up the stairs. I mumbled questions into the pillow about "steven's johnsons syndrome" and he googled stuff on the ipod. We called the doctor and discontinued the rash-inducing drug. Insomnia was certainly not going to be an issue tonight anyway.
I wanted to go to sleep... "I'm so exhausted- if i go to sleep will i die?" I felt like i had zero life force. We debated going to the ER. I didn't even have the energy for that. And if I
go to the ER will I have to wait all night just for a shot of
prednisone, when i could just sleep now, wait til morning and go to urgent care for
cheaper and get the same thing? Or am I being cheap? or irresponsible? We concluded from google that because I had no blisters, I did not have Steven's Johnsons syndrome. So I went to sleep. And I lived.
Wednesday: I woke up the next morning (OK, well, 2pm) and against any sane person's better judgment, I drove to Westfield and taught
guitar for 3 1/2 hours. I wore a baseball hat to work because I was too tired to wash my hair. The shop owner looked at me when I was done teaching and said "Are you OK?" I made it home OK but was exhausted and not
interested in food.
The rash was getting much worse.... head to toe. I've had this before from 2 or 3 different antibiotics and also from systemic poison ivy. Untreated, it is hell
and lasts over a month with me, with itching burning and total
exhaustion. I've long believed it was the month-long living in severe allergic reaction to an antibiotic, untreated, that went on for a month, that changed my health forever. I was never quite the same after that. With my autoimmune diseases (currently dormant), it's
just asking for them to be triggered. Stresses and traumas are great triggers for things like lupus and fibromyalgia. So, although I generally prefer to treat things with natural means, there is a time and a place for medication and this was clearly once of those times and places.
What really tipped Joe off that I was being affected cognitively was me watching - and enjoying- 3 consecutive episodes of that Rick Savage TV show where he goes around with a metal detector looking for artifacts. Yeah I lost some IQ this week. Hopefully temporarily.
Thursday: Joe took me to Medemerge (great little urgent care place run by doctors in Green Brook, NJ). I held onto his arm going in. I had no balance or strength. I was at that "Do whatever you gotta do" point. "Want to see my whole body? Fine. Need 20 vials of blood? No problem. Shot in the butt? I'll drop my drawers." Y'know, I wish I could get my blood drawn from my butt. It hurts
much less than the arm. Got Rx filled at Pharmacy. Took a benadryl before bed.
Friday: still a zombie. Stayed in bed til 3pm. Didn't sleep that well. Didn't do much, didn't eat much. Took my 6 prednisone pills, though. Sometime in the evening I cracked a really funny sarcastic joke and Joe and I both said "she's back!"
Saturday: Slept great. I have energy today. Kinda racing thoughts, like a little prednisone mania, but I'll take it. I've had ZERO energy all week until now, even with caffeine- nothing. So even if it's fake, I'm enjoying it. Walked around the bloack with dog and hubby and took pictures of the snow, read the mail. answered some emails, practiced tap dancing for a half hour, worked on a little music, and i'm writing this blog. And so far (the evening is still young) I haven't watched Rick Savage wander around with a metal detector for 90 minutes.
This is day 2 of a 6-day
pack of prednisone (day 3 if you count the butt booster shot). And I don't take back everything bad I said about prednisone, but I am grateful it exists.We can see each other on rare occasions, you and me, prednisone. I respect you. I appreciate you. We just can't move in together, OK?
Carla Ulbrich
The Singing Patient: Author, Humorous Songwriter and Entertainer
