Prednisone vs. the killer drug reaction

Thanks to a severe allergic reaction to a medication, this is me for the next 6 days, on prednisone (plus i got a shot in the butt this time!) http://www.youtube.com/watch?v=gYlgtloOztU&feature=share&list=UURC9gl53K4UW7qQVP5bAPjw

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

_____________

www.thesingingpatient.com - performance  info and dates

www.youtube.com/user/carlaulbrich - funny songs
www.twitter.com/singingpatient

www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book

 

Exercise, Pacing yourself, and Richard Simmons

I committed myself last summer to getting serious about regular exercise, and getting stronger. I had to be patient with myself, and let myself take breaks, work incrementally, and listen to my body. And I love how I feel after a great workout.

Unfortunately, when I've been in the middle of a lupus flare, fast-paced, sweaty aerobic workouts were not an option. I missed them a lot. They were a great stress reliever, fun, and of course good for me.

Pushing too hard too fast can lead to worse than sore muscles or injury; it could set off a lupus flare for me, or leave me in fibromyalgia pain for several days.

One other consideration: I also had to pick a workout I like.
I love music. I love to dance.  So one of my "when I'm better" fantasies was to be able to again do the aerobics record (yes, record! an LP!) that I used to do when I was 15. I loved that record. I forget the title of it, but it was Joanie Greggains and it had all kind of great music on it: Hall and Oates, BeeGees, Village People. Not on my top 10 favorite albums of all time, but great music for working out. And way better than that boring drum-synthesizer non-music track on most music videos these days.

Of course, after I had a stroke in 2002, I couldn't even get up and down one stair, never mind do aerobics. So back then I started really small. I got in the pool and kicked around. Then when I could get up and down the one stair to the outdoors by myself, I went for short walks. To the stop sign and back. A few yards further each day, with my cane, never far from the house, just in case I fell. I worked on it a little every day. Eventually I could climb stairs and get around normally, without a cane.

Fast forward about 2 years. I found a copy of that Joanie record on ebay and Joe transferred it to CD for me. But there was no way I could do the workout. I mean I was literally crawling up the stairs on all fours at that time. How was I ever going to be doing jumping jacks, leg lifts, and running in place? I tried it anyway, in a moment of pure wishful thinking/ delusion, but I just could not get through it and I ended up with a big migraine.

So I started out just walking. Brisk a walk as I could do, which for me was one 20 minute mile. I know that's not fast, but that's what I could do. Me and my ipod, with David Lee Roth singing "Just a Gigolo," looping around the neighborhood. After I eliminated dairy from my diet, I had more energy and I threw in short little passages of jogging. Bolstered by my newfound energy, I decided to try the Denise Austin "Fat Burning Blast" 25-minute workout that I used to do (on VHS). Aimed too high again. Needed percocet that night. Back to the walk/ jogs.

Then I remembered Richard Simmons. His videos don't have a lot of jumping around, and that jumping was what always aggravates my system. So I got his Disco video (great tunes!). And at first, I just did one song. Because it takes me time to learn all the moves, and I had no stamina. Then two songs. And after a couple months I could get through the entire workout.

After sweating with Richard all summer, I went back and did the Denise Austin video and now I could handle it just fine! So, I added in a Dancing with the Stars video to the mix. Wow, that was hard. I had to stop the video and catch my breath a few times. But no pain. It took a while, but now I can get through the first 2 dances (that's 30 minutes of swing and jive) without much trouble. So... it was time for the ultimate test: Joanie Greggains! I put on the CD, and Yes! I did it! And I felt fine. It was challenging, but I did not need percocet or any other remedy afterwards.

People whose lupus is not under control have to be even more gentle and more careful. It's important to move. It's important to be wise. It's also important to hope and to try.

And it was patience, persistence, listening to my body, and Richard Simmons and his totally doable workouts with fun songs that made it doable for me. Dare to dream big, but start small and check in with yourself.

Yours in health-
Carla

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer
_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs
www.twitter.com/singingpatient
www.linkedin.com/in/carlaulbrich

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

http://tinyurl.com/348hroc- Carla's book