Wednesday, February 11, 2015

Positive Addiction

I don't know exactly how to say how happy I am when I'm completely engrossed in music, whether it's writing, recording, rehearsing, performing, editing, attending a great concert. A day spent doing what you love is a day well-spent. And "a day well-spent brings happy sleep." -Leonardo DaVinci

I've  played music from the time I found the pots and pans. I got a xylophone for my first birthday (thank you, Uncle Rod!). I had recorders, a drum, an accordion, a JCPennrey guitar, all before first grade. I've always been drawn to music.

Once I started taking guitar lessons (had to wait til I was 8), I was very committed to practicing. I walked to my lessons, rain or shine, and practiced every day, I started school band as soon as I was old enough, and changed instruments every year, because I practiced so much I got bored.

When my parents bought a piano (I think they got it for my little sister), I added in piano lessons (my guitar teacher only taught beginners, so those lessons were over). At one point, I was juggling practicing 5 instruments (tuba, clarinet, flute, piano, guitar). It wasn't stressful, because I loved practicing. I rigged my double-cassette deck to make quartet recordings with myself. I lost all track of time.

I'd be playing the flute for hours, and my Dad would come downstairs at 2am: "what the is wrong with you! it's 2am! people are trying to sleep!" Oh.

But at some point he mentioned that he had read a book about "positive addiction," and he thought that was what music was for me.

Maybe. There are a number of ways to describe the phenomenon of someone being completely wrapped up in what they're doing: a passion, being in the zone, positive addiction, mental illness...?

Being happy is an important part of being healthy. After all, health is not just about physical health. According to the WHO (World Health Organization),"Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity." (Even the government has a holistic view of health!)

What do you love to do that makes you lose all track of time?
Are you making enough time in your life for it?

The Singing Patient  

Wednesday, February 4, 2015

The Hero's Journey

Last night, we went to see "the imitation game."

Loved it. It's my favorite kind of movie: true story, insurmountable task, complicated main character. The hero's journey. Very well done. 

I never get tired of reading or watching "hero's journey" stories. The triumph of the human spirit. The same thing that rivets me to the Olympic Games. Doing the impossible. (if you are unfamiliar with the term "hero's journey," here are some other examples: Rocky, Star Wars, karate kid, Shawshank redemption, Lorenzo's oil). (please feel free to add a comment mentioning a hero's journey story that is a favorite of yours).

For 22 years now, I've been attempting the impossible – to completely overcome a nasty autoimmune disease. A "chronic, incurable" illness. Of course, like running a four-minute mile, a thing will remain impossible until someone does it. Then, it either inspires others to do the same, or that person is written off as an idiot, a lunatic, a charlatan, a heretic, a liar...

What often happens with people who are able to overcome "incurable" diseases is they are dismissed by "authorities" with a remark along the lines of, "well they must've never had that disease in the first place. They must've been misdiagnosed."

In my 22 years of attempting the impossible, I haven't completely accomplished my goal, but I've had periods of really good health, getting free of all prescription medications. Already, that was "impossible," according to my doctors. 

I'm proud of this- and pleased to have basically done the equivalent of getting about halfway up Mount Everest - but I still don't have quite the quality of life that I want. And I will never give up until I do.

In fact I wear a necklace (which I never take off) that says "never never never give up."

I continue my quest for optimal health, and I no longer care what anyone thinks about my tactics. I don't believe that anything is impossible. In fact I take the word "impossible" as a challenge, like a glove to the face challenging me to a duel. 

This is my approach, and I do not expect everyone else to take the same approach. There's nothing wrong with learning ways to cope with an illness as opposed to fighting it. I choose to fight. By fight, I do not mean deny or "white knuckle" and suffer- I mean I  actively look for solutions. 

I was recently blocked from a lupus Facebook group. I can only think that it was because I was posting a bout alternative medicine and other solutions to lupus. I certainly didn't post anything offensive or attack anyone.

I am completely okay with having been kicked out of that group. It was a lot like the in person support groups from 20 years ago. Very problem-focused.

I joined forces with another person who was kicked out of that group for the same reasons, and we started a new page: cure for lupus. Typically, any page that mentions a "cure" for an illness is focused on raising money so that big Pharma can invent some kind of miracle drug for us. 

We are not waiting on a miracle drug. I don't believe there will ever be one for lupus. Our "cures" are natural and are about diet and alternative medicine- or anything that will restore balance and harmony in the body.

I'm just happy that after 22 years, I have found a fellow traveler with whom to climb "Mount Everest."

The Singing Patient  

Sunday, December 14, 2014

I think my gums are infected

Day 80:
Staying up too late again this week. Sleeping super late post-surgery threw off schedule.
Got up, taught a couple lessons then went to a music party where I was regaled with a new and improved version of my parody of "little brown jug"-hilarious! Several new verses.

Then halfway through the party my mouth really started hurting. Tried 1/2 Percocet- not enough. So had the other half. And weirdly I got sleepy. Usually Percocet revs me up.

Put a call in to the dentist. Will see what he wants to do and when... Meanwhile I'm literally sucking on an onion hoping it'll kill some cooties.

So for all you kids in elementary school yes my face hurts and I'm already sucking an onion. No room for a rotten egg.

Going to bed! This too shall get resolved. I've survived much worse.

The Singing Patient  

Friday, December 12, 2014

Still as twisted as I was in 8th grade

Day 79:
I think I can sum up my day (today) on the plan in one sentence:
When it hurts to chew, it's easy to not overeat.

At least I have superfood shakes and high-quality vitamins. Wouldn't it be ironic if I got my teeth fixed only to have them fall out from malnutrition? Don't worry- ain't gonna happen. My twisted sense of will remain twisted, twisted though. After all the challenges over the years, I'm still as twisted as I was in 8th grade.

Meanwhile I actually look forward to being able to sneeze and spit. Neither are allowed, lest I blow out my stitches. So... That'll be my celebration when the dentist gives me the go-ahead: slurping, spitting, sneezing! Where's a nice restaurant Joe and I can go to for this?

The Singing Patient  

Thursday, December 11, 2014

Day 78: 3 pounds slimmer!

Day 78:

3 pounds slimmer!
Total so far: 9.5 slimmer.
6 lbs to goal weight!
Of course the real goal is HEALTH!

I've been skinny, I've been fat, and I've been healthy and skinny, sick and skinny, sick and fat, getting by and fat (my definition of fat = 25 pounds over my ideal weight. Which I think does put me in the "mildly obese" category. but let's forget numbers for now...).

My purpose, which must not be forgotten (most especially by me), in starting this new phase of my Health Quest, was to get truly healthy. To be free of chronic pain, to have energy and to be able to focus mentally on work and go do fun things socially.

My mouth is healing (it was really itchy last night), It's still kinda of unpleasant to eat. But eat I must. I have a light teaching/ gigging schedule this week, which allows me to pace myself so I can heal properly this time. I really don't want to have anyone cut these gums open a 3rd time.
Slept in the bed in a "pile" with Joe and Easy last night (and my blackout curtains and white noise machine). LUXURY!

Following up with dentist on Tuesday. Hoping for a good report. Then I guess we'll talk about when we're going to work on the right side of my mouth. Oy... I CAN DO THIS!

(But first, a breather...)
Cheers my lovelies-

The Singing Patient