Coping

Juliana Sadock Savino used to be a professional musician, but was forced into early retirement after a hand injury. Around the same time she was diagnosed with Fibromyalgia.

Juliana’s story is a beautiful illustration of how to cope with pizazz. She found a regular activity that lifts her mood, while also giving her a bit of a musical fix that has been missing since she had to basically give up playing the double bass. That is inspiring to me.

“There is the fun that comes with feeling free to make a complete fool of myself, one of the consolation prizes of middle-age,” she told me. “I dance for myself and for the fun of being in class. My doc says I am the only tap-dancing fibromyalgia patient he knows of. Do my feet hurt? Sometimes. But as Sammy Davis says in ‘Tap,’ I want to die with my taps on. Actually I’m living with them on.”

Watch the short video that tells Juliana’s story of coping with chronic pain by tap dancing — even while in line at the grocery store!

I also highly recommend checking out Matt Harding’s YouTube video, titled "Dancing" (which is mentioned in the NY Times blog post) if you have not already seen it. It’s simple, beautiful and powerful.

Being the variety junkie that I am, I have a few different activities that help me cope with my rheumatoid arthritis: physical activities (biking, swimming), blogging here, playing my clarinet on occasion. Next year, I am hoping to take up outrigger canoeing … if my body can handle it. Really anything that I can get excited about helps me cope, from watching "The Office" to listing to a great new song on the radio.

Do you have a regular activity that helps you cope with pain? Tell me about it in the comments.

Hey gang, apologies for my sporadic posting lately. It seems that after I came down with a virus in September that I have not been good about getting myself back on a regular posting schedule. I think it’s a combination of simply being quite busy and also feeling spent at the end of the day. I come home from working eight hours and just want to veg, but then, of course, feel bad about just vegging because there are twenty other things I “should” be doing. It’s not like someone is standing over me, wagging their finger saying, “Sheryl, you should be cleaning your kitchen.” It’s always my voice that just can’t seem to give myself a break. Argh, I think I will be working on managing (and talking back to) that voice for the rest of my life. I digress…

The good news is, I’m back in action and committed to resuming my regular postings. Please feel free to join the discussion and comment. I’d love to hear from you!

Over at the Ouch! section of the BBC website, Andre Jordan creates weekly disabled-themed doodles. I find them kind of fun and wanted to share them with you. This one in particular is a good way to kick off Invisible Illness Awareness Week: 

Doodles by Andrew Jordan

Over the weekend, I stumbled across a great story about a young man named Joshua Sandoval who had been diagnosed with an invisible disease in grade school and while he was vigilant about managing his illness, he did not want to talk about it with anyone. Around the 10-year anniversary of his diagnosis, he decided to mark it by getting a tattoo that signified two important aspects of who he is: a writer and a diabetic.

As someone who suffers from Rheumatoid Arthritis, there are a few noteworthy items in his story that I absolutely related to.

Keeping the illness private for a period of time. Check. Having to get used to stabbing myself with a needle. Check. Feeling abnormal. Check.

Joshua’s tattoo is a really amazing way of expressing something that for many years, went unspoken. It’s bold, artistic, and will likely prompt questions from friends and curious onlookers. He is basically inviting strangers to ask him about his diabetes, which is a great way to raise awareness.

For now, this blog is sort of my version of Joshua’s symbolic tattoo. The blog gets me thinking and talking about my arthritis on a more frequent basis. And every time I sit down to write a post, I make progress towards acceptance.

Have you used creative methods to inform your friends and family of your chronic disease? Tells us about it in the comments.

Read Joshua Sandoval’s story here

I have trouble sitting down to relax because my endless to-do list is always tugging on my sleeve. I think this is partially due to my genes. I also believe that the Fatigue Factor contributes greatly to my obsession with getting stuff done. See, I have a hard time accepting fatigue as part of my Rheumatoid Arthritis [this will likely be dissected in an upcoming post]. Accept it or not, I experience fatigue on a fairly regular basis. Instead of coping like someone who has had arthritis for 11 years, I am often stubborn and pretend like the word “fatigue” does not exist. This is not a good idea.

One of the keys to getting things done is locating that delicate balance between figuring out what must get done today and what can be done tomorrow. It’s best for an arthritis warrior to asses their to-do list on a regular basis so that it remains manageable.

A simple little web app called Now Do This makes creating and executing a to-do list a whole lot easier. Here’s what I like about it:

• You can’t look ahead at other tasks, thus preventing an opportunity to be overwhelmed by your list.
• This tool is not meant to hold your entire to-do list for the year. But it is a lovely place to house a few important tasks that must get done in a relatively short amount of time.
• Multi-tasking is not an option. Focus on one task at a time, then move to the next item. Besides, multi-tasking never works as well as I’d like it to.

When you complete the list, the words “all done” appear.

Guaranteed to make you feel accomplished whether you walked a 5K or remembered to buy kitty litter.

How do you manage your to-do list? Share your stories and tips in the comments!

Now Do This [via Zen Habits]

I could think of a few other choice words besides “bothered.”

Having a chronic disease not only has a way of zapping your energy, but it can also deliver a mighty blow to your optimism as well — especially when you are first diagnosed and trying to sort out all the new information:

I have WHAT? I need to give myself a SHOT to feel better? I CAN’T play softball anymore? I need HELP opening the salsa jar now? I don’t have TIME to be slowed down by this disease! Bah!

Thomas Edison was an optimistic fellow and has some great tips that one can apply to managing their disease or to life in general. The folks over at Life Dev have the complete post, but I’ll offer up my favorite tip to get you started:

1) There is no such thing as a failure- there are only unexpected outcomes which will provide valuable guidance for future work

Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time. -Thomas Edison

Edison believed that most people gave up to soon and walked away from success, accepting failure. He viewed negative events as temporary setbacks on his inevitable path to success. To live like Edison, coach yourself to not take setbacks personally, and instead think of them as temporary glitches on your way to success.

When I am having a bad day, I think of that line from the movie Galaxy Quest: “Never give up; never surrender!” That helps keep me on the right track, mentally.

On days when your body isn’t cooperating and you just feel like crawling back in bed, but you can’t because you have responsibilities to attend to … how do you stay positive? Leave your tips in the comments.

Read Life Dev’s full post on living optimistically here.

If you live with an arthritis-related chronic disease, it is imperative that you know about The Spoon Theory.  Imperative, I say! It might just be the best tool out there for helping your loved ones understand your disease a little bit better.

Blogger, website founder, and Lupus & Fibro warrior Christine Donato came up with the most excellent description (on the fly, no less!) about how the lifestyle of someone with a chronic disease is different from a person who is healthy. Hence, the Spoon Theory was born!

Essentially, the theory explains that someone with a chronic disease has a limited amount of “spoons” to get them through each day, therefore he/she has to budget them wisely so that he/she does not run out before the day is over. For instance getting up, making breakfast, showering and getting dressed would require at least four spoons.

Excerpt from the Spoon Theory:

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war.

Christine’s theory is a great way explain to friends and family alike why you sometimes have to cancel plans, or why you need to rest in between activities, or why sometimes you don’t have the benefit of a “second wind.”

Have you come up with creative ways to give your loved ones insight into your disease? Share your story in the comments!

The Spoon Theory (PDF) [via ButYouDontLooksSick.com]

A company called Warm Whiskers was giving away what looked like a cute little stuffed dog to all the kids in attendance. Upon closer inspection, I learned these furry friends actually doubled as heat wraps! Some of their animal-shaped products include, neck wraps, body wraps, body pillows, slippers, pocket critters, and eye pillows. What a great idea for relieving tension The little pup at the top of this page is my favorite!

Most of the critters can be heated or frozen, and are filled with buckwheat, flaxseed, and sometimes lavender.

Warm Whiskers

A recent podcast of NPR’s Speaking of Faith struck a chord with me. It features an interview with physician and author, Dr. Rachel Naomi Remen, who has lived with Crohn’s disease since she was 15 years old. I found the discussion in the podcast to be immensely inspiring, plus it gave me hope. How refreshing it was to learn how Dr. Remen’s experience with battling Crohn’s has actually shaped her as a doctor.

She developed a course called “The Healer’s Art,” which is now taught at universities around the U.S. Students learn that healing and curing are two different types of relationships, while being reminded “of their power to make a difference through their human response and connection to their patients.” Read the rest of this entry »