Taking Care of Your Corner of the World

A little something from the "good news" department. 

This is Ares. 

Earlier this month, my friend's dog (Ares) got spooked by some fireworks and broke out of the gate. He was missing for about 2 days. Turns out he was hit by a car, then someone dropped him (severely injured) at the animal shelter.

Once the family was reunited with Ares, they brought him to the emergency vet, who quoted a really high price for the necessary surgery (leg amputation). The family was looking at having to put Ares down (they have 2 boys in college, and thousands of dollars in vet bills was just not something they could manage).

I saw their post about Ares on facebook, and how saddened they were about the prospect of euthanizing their dog. And I thought- this isn't necessary! A number of their friends had already offered to chip in a hundred dollars.  So I set up an indiegogo campaign. One of those sites where you have a project (frequently, it's a band wanting to make a new CD), and you set a monetary goal, put your story up on the site, then spread the link around via social media and email and ask people to contribute to your cause.

Meanwhile, friends helped the family find a more affordable vet who would take installment payments.

Then, sure enough, everyone pitched in and raised all the money in just 3 days! All I did was set it up and post it on facebook and twitter, and send emails to some mutual friends. It was a group effort. But with everyone doing just a little (and a few people doing more than a little!), we saved a dog's life.

I learned a long time ago that I can't save the world. But that doesn't mean I should throw up my hands and do nothing. I can take care of my little corner of the world. And if we all take care of our little corner of the world, what a wonderful world it will be. Think globally, act locally. If you can make a difference, do! Believe me, Ares' family definitely are the kind of people who make huge positive differences in their corner of the world.

What we have domesticated, we must be responsible for. We made these animals dependent on us, so we must care for them. And they give far back more in return, if we let them. Pets can be such a comfort, so smart, so funny, so loving- a link to nature and an example of how to live in the moment and relax.

I donate to big groups like ASPCA, but I really feel I make a tangible difference when I bring a bunch of old blankets or a pile of newspapers to the local animal shelter. I also donate to local no-kill shelters, like the Happy Cat Sanctuary and Goathouse refuge, where you know the animals are rescued and loved, and little or no money goes to advertising (fundraising) or administration- and you can visit!

It feels so good to know you made a difference in someone's life. It really is better to give than receive.

We love you Ares! You brought out the better side in all of us.

Carla
www.thesingingpatient.com

Ask me anything! Live chat 5/20/14 3pm Eastern

Wanna be part of an autoimmune-focused internet chat with me? I'm going to be in the chat room this Tuesday, May 20, 3-4pm Eastern time (USA).

My chat is freestyle- no interviewer asking me questions. That was my choice.
I plan to chat about using humor as a way to gain some control, be happier and be healthier emotionally. BUT... we can talk about anything autoimmune that you like. A number of people are doing "A day in the life," so if you want to know about a day in my life, that's open for discussion. Really anything is, but let's try to stick to things that are somewhat related to humor, healing, or illness topics. Because if you get me started on The Big Bang Theory (The TV show, not the actual theory) or Looney Tunes, we'll eat up the whole hour on either of those.

What do you wanna talk about? Think about it, write it down or send yourself an email so you'll remember, and bring it to the chat room this Tuesday! There is a small fee to attend. If you wait until after the conference, I believe you can view all the content for free (but you can't interact or ask questions, because it'll all be recordings).

Official Blurb:
World Autoimmune Arthritis Day 2014 is here- and is designed in a high tech, virtual convention site specifically so all nonprofits, supporters, and patients around the world, regardless of location or physical capability can join. The live portion, which is 47 hours (or May 20th in every time zone around the world), is filled with interactive chats, forums, and a feature A Day in the Life of an Autoimmune Arthritis Patient series. The Day in the Life helps patients understand how to better manage their disease and invites supporters to "walk in our shoes" for a day in the way of challenges.

The fee to attend the LIVE portion of WAAD14, which provides access for the entire 47 hours, is $5 USD prior to the event and $7 at the door. This event is planned, designed, and run by the International Foundation for Autoimmune Arthritis, a 501c3 charity headquartered in the US. REGISTER HERE: http://tinyurl.com/kslttnc

Hobbies, Vocations, and Pursuit of Mastery

"How long will it take me to be good?"

A lot of people ask me that when they sit down for their first guitar lesson.

I've been teaching for 20 years, and here's my answer (and this applies to learning anything, not just guitar): it depends. On you. I can't plop guitar-playing ability on your head. You can't buy the ability to do something. I will guide you, show you the way, but you must do your part.

So, tell me this:

• What do you mean by "good?" (able to strum a few chords and sing along? Able to play the lead guitar part of the Freebird solo note for note? Concert classical guitarist? Able to play with your teeth, while the guitar is on fire and you're holding it behind your head? What are your goals?)
• How much do you already know? (Did you play another instrument, or do you already know some guitar chords?)
• How motivated are you? Are you able to put time into this outside of lessons? How much time? what other priorities might you have that you might have to balance with your pursuit of learning to play guitar? (If you're a teenage dude who wants to learn guitar to get girls, you're probably very motivated and have lots of time to practice. If you're a married middle-aged guy, your motivation is probably to have a nice distraction from your stress- not as motivating as the biological drive to "get chicks"- and you probably have lots of things interfering with your practice time).
• What kind of practice habits do you have? Will you be just playing guitar during that time, or also watching tv? Will you focus on learning new skills and not just playing the stuff you've already mastered?

The 10,000 hours theory
People can learn an incredible amount of information and develop a great deal of skill in a short amount of (calendar) time, if they are able to devote themselves to it, and give it full focus. I've taught a few very focused 18-20 year old guys more guitar in one schoolyear than I learned in my first 10 years of playing (of course, I was 8 when I started. Some concepts my brain was not ready for yet. And, though I practiced quite regularly, I was not playing guitar to attract the opposite sex).

The best-selling book "Outliers" (Malcolm Gladwell) touts the rule of "10,000 hours." Meaning it took 10,000 hours of study and practice a specific task in order to master it. One example: The Beatles, who performed live in Hamburg, Germany over 1,200 times from 1960 to 1964, amassing more than 10,000 hours of playing time (meeting the 10,000-Hour Rule). Beatles' biographer Philip Norman says, (By the time they returned from Hamburg) "'they sounded like no one else. It was the making of them."

There's even an improv collective in NYC that has a program called "10,000 hours" where you can sign up for improv jams and hone your skills, getting closer to that 10000 hours needed for mastery.

Let's do the math.
If you were able to work 10 hours a day, 365 days a year on your new skill (not impossible, but you would have to be pretty obsessed and have some viable means of financial support), that would be 3650 hours/ year. Meaning it would take about 3 years of total immersion in a task to reach complete mastery. Most people can't put in those kinds of hours, unless their job IS also the skill they are working on.

I recently heard someone say at the PIT (People's Improv Theater) that "Somewhere around the 10-year mark of doing improv, it all suddenly starts to click." 10 YEARS?! If we do the reverse math, that's 1000 hours a year, or 20 hours a week (with 2 weeks off!), and we're back at 10,000 hours. Theory seems valid.

Is mastery necessary?

Now, I want to bring up one other thing. Is it necessary to master everything you do? Well, of course not. I don't believe it possible - or necessary- to achieve complete mastery in everything you do. Am I a great housekeeper? No. But my home is also comfortable and fairly clean. Am I a great cook? No, not even a good one. I'm not even that good at dressing myself. Sometimes I'm just not stylish. But I don't really care about those things. I put enough thought into them so that I'm functional, but I reserve my energy and brain space for other things.

And sometimes the pursuit (or imposition of the pursuit of) mastery sucks all the fun out of a previously enjoyable pasttime.

At times, I have sabotaged myself by being a "Jack of All trades, master of none." Meaning, I was pursuing mastery in too many things at once. One of my college professors told me I was like "a race horse going in 5 directions at once." That is another trap that can sabotage success, and one I've fallen into numerous times: lack of focus.

Am I a Master of Anything?

I have put a lot of hours into songwriting, but have I mastered it? Well, no. I've written songs I'm proud of, and that have done well for me, but I know I still have things to learn.

Have I mastered guitar playing? No, but I'm good enough to accompany myself, play a few fancy instrumentals and teach beginner and intermediate players in most styles.

Have I mastered teaching? Well, I'm pretty good, if I do say so myself. I believe people get their money's worth from their time with me, and I get a lot of customers (students) from word of mouth (recommended by other students of mine). (BTW, I'm pretty sure I've put in 10,000 hours teaching).

Performing? The hours I've spent on stage and in workshops, and on live radio have transformed me from frightened mouse who apologizes for each song before playing it (or signs up for an open mic then runs away), to mostly confident and fairly funny performer who pretty consistently gets great reviews (and is often paid quite nicely). (BTW, I've probably put in 10,000 hours performing, though not in as short a time as the Beatles). I'd say I've reached and then reset my goals in the performing area more than once (in other words, achieved what I thought was success, then set the bar higher). There's always more to learn, and I keep learning.

Forget the 10,000 hours theory

FYI, you can't wait until you have already mastered something to start doing it. Doing it is how you master it (or, rather, "get good"). As one book title (sitting on my shelf) says "Ya Gotta Be Bad Before Ya Can Be Good." (Which reminds me, thank you old high school and college friends, for praising me and supporting me while I wrote all those depressing songs! I think you actually genuinely believed in me- thank you!).

So, whatever it is you wish to do, just do it. Find someone who knows how to teach, and knows the skill you want to learn (just because someone can DO something... don't assume they can also teach it. Ask around for a good teacher. Oh the stories I could go into here on music teachers from hell!).

Don't worry about how silly you might look, or "what if I make a mistake?" You will make mistakes. That's how we learn. Just figure out what made YOU want to pursue your passion, and what success means to you. And it doesn't need to take 10,000 hours to reach your goal. Mastery is not always the goal. Sometimes competency is the goal. It's OK to have a hobby. You can do something just for enjoyment.

If success to you is being able to strum and sing folk tunes, and you learn to do that in 6 months, GREAT! Now you have a skill and a pleasant social one at that. If you then decide you want to go further with the guitar, great. Or if you then decide to learn folk dancing, super. Or if you then decide "I'm just gonna sit on my porch and play these folk tunes after dinner every night," awesome. You define the passion, the motivation, and what success looks like.

I'd love to wrap this post up with something well-written and profound, but... that's about all I have to say on this for now. Please feel free to chime in with comments.

Carla
www.thesingingpatient.com
 

Posting questions in health forums, sorting through answers

There are a number of health forums (kinda like what we once called "chat rooms") on the internet now, where you can post a question and others (usually patients) chime in with what has worked/ not worked for them. There are forums for almost any specific disease you can think of, and often more than one.

When you post a question to such a forum, you're going to get a lot of answers, and you can be almost 100% certain they will conflict (at least in the lupus forum people stay on topic. There's no one turning every conversation into "Obama this" "right-wingers that." Geez, lupus patients are fighting brain fog and they can stay on topic in a forum! Are you listening, Yahoo News trolls? Oh wait now I'm off-topic. Ironic).

Here's an example of what you might get.

This question came from a lupus online forum:

"I'm writing for advice on neuropathy treatments.
I have just tried 10 k lazer treatments for the neuropathy in my feet and it made zero difference.
I can't stand up longer than 10 mins at a time and am adjusting to walking with a cane now.
If anyone can share something that has helped please let me know."

It was met with several responses:

1) neurontin didn't help me but lyrica does, though i still get break-through pain.

2) I have a friend who had neuropathy and falling and was helped by Cymbalta

3) I was on neurontin but was struggling with bad headaches so my neurologist switched me to amitriptyline. I also have IVIG treatments, they seem to work for me.

Here's my response:

I actually was helped by neurontin. but we're all different. And it wasn't generic at the time. I imagine it is by now, as that was 2002 when I took it. My feet used to burn like mad and keep me up all night, every night. They would finally stop burning about 6am, then the ^&%$ leafblowers and lawnmowers would start up at 7am (living in South Florida at that time).

People who haven't been there can't quite grasp how torturous it can feel. Which is why I was so grateful that the neurontin worked- I could finally SLEEP! (Once the leafblowers left, anyway- I've since learned to appreciate a bedside white noise machine).

I did read the warnings on neurontin, and I knew it wasn't a long-term solution. I wanted to be drug-free, even though the drugs were helping. So i kept looking for solutions, and I was helped a great deal by 2 things: Chinese acupuncture and chelation therapy. I was doing several things at once so I can't say which helped most, but those were the 2 things (besides doctor appointments and trips to walgreens) that I did the most.

Nowadays, I stay healthy by avoiding the foods I'm allergic to, and getting enough rest and exercise.
I am now on zero lupus drugs. and have zero neuropathy since 2002

I found it very helpful to keep track of my symptoms and pain levels, and what treatments/ changes I was making in a journal. I could measure my progress, and tell which things help and which don't, because it sometimes takes a while for things to make a difference. Like acupuncture or diet change- it can take days or even a weeks before you notice a shift.

You can create a journal with something as simple as a spiral notebook, a Word document, an app like Symple, or this customizable "Symptom Tracker" that I created (it's free):  http://thesingingpatient.com/free_offer/

-------

Ultimately, it's you who lives with any decision about your health care. So, the way I handle sorting through responses I get from forums is this: whatever pops out to me amongst the responses as feeling like a good thing to try, I give it a fair shot. I try stuff. Keep what works, toss what doesn't. And I keep track of my symptoms and what changes I am making, so I can connect the changes with the results.

My best wishes for great health for each and every one of you-

Carla

Carla Ulbrich

The Singing Patient

Humor, song and hope for people  who need it most- patients and healthcare workers

www.thesingingpatient.com

Sisyphus VI: Pax Be With You

Sisyphus VI opens with a friendly sparring session with Orion. Sisyphus is in good form and enjoys the session.

Shortly after, a match is set up with Pax, who has been crushing everyone in her path.

Sisyphus' first strategy was to rope-a-dope Pax. Estimating that Pax was only going to have a 4-8 inch reach, Sisyphus went out at 2:45am to shovel away the first 2 inches (only took about 6 minutes), then went to bed. She thought she had outsmarted Pax, only, upon awaking, to be greeted with a foot of wet, heavy snow. She clearly underestimated her opponent.

Picnic, anyone? (From the set of Sisyphus VI)

Putting on her gear, her husband shouts,"Don't do it! You are NOT shoveling this!" "I'm just going to assess the situation," Sisyphus said. As she shut the kitchen door, she grabbed her shovel. Never tell Sisyphus NOT to do something.

Here, the plot becomes kind of a "Rocky VI meets Pay it Forward." Someone (we don't know who) had shoveled the end of her driveway- the part that would normally be impassable by car without shoveling first. So she, in turn, shovels her and her neighbor's shared walkway, which she had planned to skip this time.

As she shovels the center of the driveway, she realizes she's running out of places to put the snow. The pile in the yard is as tall as she is. If she just dumps it into the street, the plow will pile it at the end of the driveway when it comes through. But there's nowhere else to put it.

The shoveling scene is as long as the one in Maximus- a full hour. And you hear her inner monologue, as she's wondering whether she still had the eye of the tiger. The fun has left the fight. Maybe the season has been too long. Maybe there have been too many fights too close together. Maybe it's time to retire... A moment of contemplation, as she stands there holding the shovel upright, thinking about quitting mid-fight. But then a voice inside says "Never give up. I may rest for a moment, but I will not be defeated! I will not quit!" And although she may not feel like she has the eye of the tiger, she goes the distance. She finishes the fight. And knowing that, she can hold her head high.

The match ends in a tie.

Back in the locker room, Sisyphus hears that Pax wants a rematch. Immediately. As in 12 hours later. Are we really not taking ANY time between sequels now? Geez, talk about milking a franchise.

Sisyphus has new strategies lined up already: You know how they say "When God closes a door, another one opens? Or maybe He closes a door and opens a window? Well, now that my yard is 'closed' for snow dumping, I'll open a manhole cover and dump it down there." Well, that's creative. Wonder if it's legal. And also, next time she plans to wear an ipod, playing- you guessed it- Eye of the Tiger. Already cued up. This might be worth watching. I almost hope Pax shows for the rematch.

What did we learn? I guess you can climb a mountain or fight the fight and succeed, as long as you persist, even if you don't feel like a champion single every moment.

Did any of you see Sisyphus VI, or anything starring Pax?
What did you get out of it?

Carla Ulbrich

The Singing Patient

Humor, song and hope for people who need it most- patients and healthcare workers

www.thesingingpatient.com