Saturday, November 29, 2014

Day 65: a setback

Day 65: a setback. Persistent shoulder pain. I haven't missed you, O unwelcome companion. Took Advil - not enough. Took another, plus shoulder rubs. Not enough. So I broke out the big guns and had half a Percocet. That did it.
Weird thing is Percocet does not get me drowsy or high. It reduces/ eliminates pain and suddenly I feel like tackling chores. I put the "perk" in Percocet! So I plowed through a stack of mail, cleaned some clutter and put stuff away.
I ate fine, except I had a leftover cupcake...
Tomorrow is another day - and I hope the pain disappears as inexplicably as it returned.

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

Friday, November 28, 2014

Thanksgiving!

Day 64: thanksgiving.
A lovely day of feasting with extended family.

My plan was to have just one (gluten free dairy free) cupcake. Joe was a prince- went down to tulu's bakery in the village when he was in NYC tues and got a dozen cupcakes. This is where he gets my birthday cake every year.

Sugar is not on the plan but I figured one cupcake on thanksgiving would be ok.
I had lots of veggies: broccoli, sweet potatoes, marinated artichokes and cauliflower. Some cornbread, a little mashed potato, bit of turkey. A reasonable meal, ESP. Considering the huge amount of tasty food before us. And just water- had no soda.

A bit later I had my delicious cupcake, as a game of Italian/English scrabble started up at the other end of the table. We sat and talked with joes brother and our nephew and niece. And I sat there so long in front of those cupcakes I caved and had a 2nd one. Tsk tsk!

So... This means... No big deal, that's what. I'm back on the plan tomorrow, that's what it means.
One dietary indiscretion does not mean utter failure, unless I repeat that indiscretion and give up. So- back in the saddle. And I won't sit at the dessert table so long I'm the future. Or at least move the tempting desserts out from directly under my nose. Onward!

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

Thursday, November 27, 2014

Well rested?

Day 63: woke up feeling rested! Woah! So this is what it's like to not be pulled in a hundred directions for a couple days. Nice!
Icky out. Never left the house. Some songwriting and too much facebooking, but did very well on the plan today. Let's see how I handle the thanksgiving dessert table!

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

Wednesday, November 26, 2014

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

Lupus and General Health chat Tues. 12/2 5:30pmEastern

Tuesday, December 2nd
5:30 pm to 6:30 pm Eastern time 
Hospital for Special Surgery and S.L.E. Lupus Foundation present:
Lupus & General Health Chat
Hosted on the HSS Facebook page:
Attendees will be able to ask lupus-related questions and get answers from a panel of experts, which includes rheumatologists, dermatologists, and social workers.