The Definition of Health, and my quest to settle for nothing less

I think of health as a spectrum.On one end, you're dead. On the other, you're flourishing.

Anyone who's everhad a houseplant or a garden knows the difference between a dead plant and a live one, and also the difference between a plant that is doing OK and one that is flourishing.

The World Health Organization defines "health" as:
"a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."

Let that soak in.
Not merely the absence of disease.
Complete well-being.

When we are diagnosed with a chronic illness, we are told to "accept" our illness and to settle for something far less than the WHO's definition of health. We are told by our doctors that such a dream is now unattainable for us. I have refused to believe this from Day 1. I do not and will not accept it.

I have tried all kinds of alternative medicine over my 21 years since being diagnosed. A lot of it has helped me tremendously, and I've been able to taper off all the lupus and blood pressure drugs, each of the 3 times I've had a flare. And my flares are not minor. They involve kidney failure, congestive heart failure, pleurisy, anemia, and even a stroke. Not mention hair loss, weight loss, fever, exhaustion, neuropathy and chronic pain. (OK I just mentioned those).

Our mainstream doctors are trained to treat us with only 2 tools: prescriptions and surgery. Yes, prescriptions such as prednisone are the reason I am still alive and able to sit here and type about anything at all. 50 years ago, lupus was a death sentence. So I definitely appreciate the existence of life-saving drugs, and I take them when I'm in trouble. I am NOT anti-drug.

However, long-term prescription use is *always* going to have consequences. And sometimes those consequences are very serious. And anyway, drugs can't get you to "flourishing." They can get you to the "not dead" zone, or even the "OK" zone, which is the best we're told top hope for. But being diagnosed in my early 20s, I wanted more than just getting by with "OK" for the next 40-60 years.
(Especially since "OK" seemed to mean, from the folks I saw at support groups back then, being 50-100 pounds overweight from the steroids, and thin to no hair. And in some cases, frequent surgeries to replace bones eaten by the steroids. How was this OK?).

Thus, my search for better answers all this time. I wish I could type up every single thing I've tried in one concise blog post, but we're talking 21 years of experiments on myself. And what works for one person doesn't always work for another.

However, there are 2 basic, sustainable habits I would recommend every lupus patient try:

- Qi Gong (also spelled chi gung). This is a deep-breathing, slow-moving Chinese art much like Tai Chi. Make sure you find a practitioner/ DVD that teaches healing chi gung, not warrior chi gung.

- diet modification (eliminating gluten, dairy, eggs, diet soda, sugar). This can be done on your own, or with a health coach, or setting up a pair or more of you to do it together. Or you can do what I did, and get a system that makes it very easy. Here is the system I've been using for the last 63 days. It's both really nutritious *and* it detoxes your system. It has completely eliminated my need for narcotics and I have slimmed down by 6 pounds with no exercise. I'm really pleased with this.

http://www.isagenix.com/en-US/Isamovie#cat=weightLoss&vid=9jeIL82Of9I

Cheers and good health!

Carla
The Singing Patient
carla@thesingingpatient.com

http://www.thesingingpatient.com

Day 35: complacency, vanity

Day 35 on nutrition plan, and still feeling good!
Already hit one of my goals for this 30 days (going 30 days at a time), which was to slim an inch off my waist. I'm only 5 days into this 30 days...

So rather than set another "inches" goal, because I can't really control where/ when/ how my body decides to reshape itself (the first 30 days, my waist stayed the same, but my fanny shrank), I'm just going to set a goal to stay on the plan, and off sugar and carbonation as well (those aren't on the plan.... but they are my biggest saboteurs!).

I ran out of mental energy today, so instead of writing a song about today's thought, I have a song snippet I wrote a week or so ago about the struggle between choosing between surviving and looking good. Ever notice that cancer patients look fine- until they start getting treatment?! Yeah, same with lupus.

http://youtu.be/f5xUqoeMDIs

Carla Ulbrich
The Singing Patient
http://www.thesingingpatient.com

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

Treatments for Lupus: Prednisone

When I was diagnosed with lupus by a mainstream doctor, and then sent to a specialist (rheumatologist), I was given two choices: take prednisone or get cussed out. I didn't know about the cussing out option until I went for my second appointment and hadn't taken the prednisone. The thing is, I had read about all the side effects of prednisone and to me it sounded worse than lupus.

But here's what I eventually learned (the hard way): if you have systemic lupus erythematosus (a.k.a. SLE, lupus, lupus SLE, systemic lupus, or lupus erythematosus, or even the misspelling "lupis")....where was I? Oh yes, if you have lupus, it's not going to just go away by itself if you just wait it out, like a bad cold or bronchitis. I tried that. I got very very sick, down to 80 pounds. Lost most of my hair, kidneys failing, too weak to get out of a chair, constant pain. I would have died if I hadn't finally decided to get on some medication.

The first thing I did after being diagnosed was go to the library (this was 1993, pre-internet) and look up "lupus" in the encyclopedia. It said that people who were diagnosed with lupus usually died within 5 years of being diagnosed. This was very old information, because it was obviously written before they found out they could control lupus with drugs. I did not know it was old information at the time.

The next year I met a woman who was one of the first people to be given prednisone for lupus. They didn't know what dose to give her, so they started with 250mg. That is not a typo. Seriously. Can you imagine? I go bonkers on 40 mg. She found herself at a dinner party one night and before she realized what she was doing, she pulled the salad serving bowl in front of her and started eating out of it with her hands.

I did eventually go on prednisone. The pattern has been this: I take prednisone for about 9-10 months. And then I've been able to wean off it. Then 4-8 years later, the lupus goes bonkers again and I go back on the prednisone. Repeat.

Now when websites and doctors talk about lupus, they say it goes in cycles of "flares," rather than saying you'll be dead in 5 years. I attribute this change to the use of medications to quiet the disease. And I attribute the cycle of flares to the coming off the drugs and going back on them. Which is why some doctors try to keep patients on a "maintenance" dose of prednisone (or some other drug), in order to prevent future flares.

I rely on prednisone and it works for me but I hate the side effects and it's dangerous to be on it long-term. So I have searched high and low, near and far for other more natural options to build up my health and quiet the disease.

I've done acupuncture, chi gung, bodytalk (energy medicine), chelation therapy, chiropractic, lymphatic massage, regular massage, physical therapy, movement therapy, talk therapy, life coaches, psychiatry, got all my metal dental fillings removed and replaced, became self-employed and pursued my dreams (yes happiness affects your health), cut toxic people from my life, and changed my diet.

Out of everything I tried, the diet change (cutting out gluten, dairy, nutrasweet and MSG) and chi gung actually made all my lab tests straighten out, and I got the first negative ANA test I've ever had since 1993. And they basically cost nothing.

My last lupus flare was in 2006. I went on 5-6 drugs (including prednisone). I was able to wean off most of them within a year, except for the blood pressure drug, which I finally weaned off of just this past month. I feel like I'm in pretty good control of my heath now, because for me the diet makes such a huge difference. I have several big motivators to stay on that diet: not wanting to suffer from lupus, not wanting to suffer from prednisone, and not wanting to limited in what I can do physically.

I don't really care if a doctor cusses me out. That's not a motivator for me. In fact, it makes me that much less likely to "comply."

But now, because I have experienced the consequences of taking and not taking any medication while lupus is chewing up my organs, I am rather open to the idea of pharmaceutical intervention. If I ever have another lupus flare, yes, I will take prednisone (and ask people not to take my picture while I have a moon face). It's cheap, it works for me, and it has saved my life 3 times.

Prednisone was the first effective treatment for systemic lupus. Before that there was no hope. Just start planning your funeral. So, although it makes me batty, and it tastes like Ajax (I've accidentlaly bitten a pill more than once), I'm grateful for this drug. There are other medications out there for lupus now, as well as effective non-drug treatments, and I will talk about them in another post.

Meanwhile, here's a song I wrote about my love/hate relationship with prednisone.



From the CD



Carla
Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.facebook.com/TheSingingPatient
www.youtube.com/user/carlaulbrich - more videos

Prednisone vs. the killer rash Part 2

In the great battle of Prednisone vs. the killer systemic rash, the prednisone has WON! My rash has pretty much disappeared. As has my prednisone. I took the last one yesterday (it was a 6-day pack where you take 6 pills on day 1, then 5 on day 2, then 4 on day 3, etc.).

These last couple days I was getting headaches from prednisone withdrawal. I knew that was what it was because I've been through prednisone withdrawal several times now. Three times I've been on prednisone for 9-12 months to control lupus, which was attacking my kidneys, lungs, heart, you name it. And every time we cut the dose, I'd feel like crap for 3 days. If we cut it a lot, like from 40 to 30 mg in one swoop, I'd feel like I had the flu for a few days- achy, exhausted, sleeping 14 hours a day. So, it's good to just remember "Oh yes, it's just prednisone withdrawal. It's not me getting sick again, or getting something else. This will pass." And yeah I took an Advil yesterday for the headache. I'm not a martyr.

Yesterday I took my last prednisone pill of the 6-day pack and today I did something I *never* do- I took a nap. For an hour. I really didn't want to get up, with my sweet little furry friend curled up by my chest (the dog, not my husband), but we had a valentine's dinner to go to (with the hubby, not the dog), and anyway if you nap too long, you can't sleep at night. Boy those little furry friends can relax you right to sleep.
Here's our dog making sure my hubby gets a nap:

Before the withdrawal, I got to enjoy a couple days of prednisone mania. Some people use the mad amount of energy prednisone can give you to clean the house. I used mine to write 2 ridiculous songs, start 3-4 other songs, and finish and record one other song I've been working on. This is the fun part of prednisone.

The not-fun parts of prednisone, of course, are the withdrawal, and, if you stay on it long-term: hair loss, weight gain, mood swings, osteoporosis, cataracts, diabetes, insomnia (already have that, pass on having even more thanks!), and that lovely moon-shaped face. I can't believe I'm about to do this, but here are before and after pictures of me on and off prednisone.  I actually weigh *less* in the prednisone picture (the middle picture) than in either of the others. I'm about 95 pounds in the prednisone picture, but the drug puffs my face up so much I look like I weigh 500 pounds. I considered putting pictures like this in my book, but my publisher (probably wisely) decided against it.

Carla before prednisone:

during prednisone (obviously, no makeup):

after being off prednisone for a while (also no makeup):

After having my looks altered this drastically once, you can only imagine how desperate I'd have to be to ever go on prednisone again. But I did. Two more times. I resisted every time because of these effects. It always came down to the realization that I would die if I did not take this drug. So, I owe it my life. But I always do everything I can to not be on it long-term, and that's why I'm on a gluten-free dairy-free, no egg, no nutrasweet diet. Those are my food allergies and if I avoid them, my disease stays quiet. And I don't need prednisone. Unless of course something happens like this past week and I have a severe allergic reaction to something else. But that's short-term prednisone, and I can deal with that.

I've said this before, but I feel it bears repeating: if you are on prednisone, do NOT EVER suddenly stop taking it. Prednisone replaces a hormone that controls your vital organs and there is a lag time between when you stop taking it and when your body starts making it again. This is why you MUST taper off the drug slowly, or you will go into crisis and end up very sick or dead. Or worse, on even higher doses of prednisone.

Well wishes to you-
Carla

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

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