Day 13: Minor Breakthrough?

I felt good today! I mean, actually good.
I woke up rested.
I got a lot done.
I was in a good mood.
I went for a brisk walk!
Who is this person?!
Let's hope there are more days like this to come!

Meanwhile, someone somewhere could find a reason to write a blues song about this, so here it is (after a bit of rambling of course, and my showing you my giant tub of unfinished song ideas):

Carla
http://www.thesingingpatient.com
http://www.facebook.com/carla

Day 10: Tapering Off Drugs Carefully

Day 10! Still on the plan. Still pain-free!
And now, every so carefully, weaning off one of my prescriptions.



Carla

http://www.thesingingpatient.com

Day 9

At times over these last 22 years of dealing with lupus, I've had to choose between my health and my vanity. Even facing death, I've been like " but my hair.. i don't want to lose my hair! And I don't want to gain 50 pounds from the drugs!"

It sounds petty and ridiculous to someone who hasn't been there. But believe me when those are your 2 options- look like hell or die- some of us have to actually ponder the choices before agreeing to looking like poo. Let's see- Death or death warmed over? is that really the best you got?

So that's why all these 22 years I've been looking for those 3rd options in alternative medicine and lifestyle change. And I've had successes. I just tend to forget, after I get off the drugs and get well and get on with my life, to maintain some sort of sustainable regimen (it's regimen, not regime! A regime is a political power- but I digress).

Anyhow I hope this plan continues to keep me pain-free (as it has for 9 straight days!) and is something I can stick with long term. I also deeply hope that it lowers my unacceptably high inflammation and brings my kidneys back to normal.

And here's today's ridiculous song.

Carla
http://www.thesingingpatient.com

Days 8: ADD kinda day, but stayed on the plan

Day 8:

I woke up feeling NOT tired for the first time in a very long time!
Still not in pain, as well!

Had a really long lunch with a new linkedin acquaintance, then sort of scattered my energy in somewhat useless directions. Just very ADD. It's rare to have energy so I'm sad I squandered it.
I didn't even manage to do a vlog, though I had a parody in mind:
A beatles song:
"it's day 8
 and I ate
 just what I'm s'posed to so let's talk of something else besides the things I'm eating..."

If you know the beatles well, you can tell me what the title of the original song is. I can't seem to dredge it from memory.

Memory... I remember when I had a useful memory. Actually, no I don't.
I recently read that congition is impaired when you have lupus (or any active autoimmune disease). My reaction was "uh, DUH, everything's impaired. The body has to use whatever resources is has to keep vital organs running while simultaneously attacking them. It's hard work. Just ask our government about Iraq. Destroy, rebuild, repeat.

One of my favorite things about this plan is that is is kind of a no-brainer. It doesn't matter if I have a crap memory, or ADD, or both. I posted the daily plan on the fridge, and now I just go see what the next snack/ meal/ supplement is and have it.

2 of my 3 meals per day for the first 30 days are shakes. Meaning I just pour some vegan protein powder in my magic bullet blender with water and ice, and that's my meal. No big decision making, no real prep time, and almost no dishes (1 plastic cup- I clean the base right after I finish blending).

I've never been much of a cook, and not even a fan of food. Unless it's junk (chips, candy, soda- none of which are actually food. I call them "anti-foods" because they take more from your body than they give it. So I don't mind not cooking. The 3rd meal could be cooked but for now I'm just making a big salad and putting snoked salmon or something like that on top.

I have to say though, once you wean your taste buds off the overstimulation of too much salt/ sugar/ additives/ artificial sweeteners, simple foods and healthy foods taste better. I'm starting to really enjoy the berry-flavored shakes (made of actual berry powders).

See you next post!

Carla
http://www.thesingingpatient.com

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

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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