Last Minute Halloween Costume

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Boo!Ever thought of going to a Halloween shindig as “arthritis?” With a suit that was recently developed by Loughborough University, now you can. The suit is more of an eye-opener for the person wearing it, though. People who encounter someone dressed up as “arthritis,” wearing a mostly black, with white and red “accents” jumpsuit might think you are a skydiver or a motorcross racer.

The concept behind this funny-looking suit is that it gives others insight into what life is like as an osteoarthritis patient. Whoever is wearing the suit will find it hard to bend down to pick things up, open jars or climb stairs, among other things.

What a great idea. These suits should be featured at all arthritis events (walks, conferences, support group meetings) so friends and family members can walk in our shoes for a few minutes. Doctors could even try it for a day to better understand what their patients are going through.

Now, if only someone could invent a super suit that reversed the effects of arthritis! I’m waiting for that day. And that suit better be pretty stylish.

But this got me thinking, if you did go to a Halloween party as “arthritis” what would that look like? Leave your ideas in the comments!

Happy Halloween! Have a spooktacular day.

The suit aiming to replicate arthritis

Fibromyalgia Patient Finds A Path To Better Health Via Dancing

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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.

Tales Of An Arthritis Blogger

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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!

Great Gadgets: Musings On A New Device

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I’ve had rheumatoid arthritis for 11 years. I’ve been taking medication twice a day now for about that length of time, yet sometimes I simply forget to take it. I’m a bit embarrassed to admit this because it seems sort of ridiculous to me, but I’m sure I’m not the only one. Well, I hope I’m not the only one!

According to a New York Times article I was reading over the weekend, “busy people can forget to take their medications.” Good. I’m not the only one. 😉 A Silicon Valley company (Zume Life) is testing a new device called Zuri that will help you remember to take your meds, while also keeping track of symptoms, diet, exercise, and other health information. All of this data can then be uploaded to a website. The geek in me thinks this is pretty nifty.

The Zuri will not be cheap, though. It will retail at around $200 and the monthly fee for web services will run about $40 to $50 a month. Whoa! Basically, it’s like having another cell phone. Perhaps other companies will begin to develop similar devices and, eventually, we’ll have a variety of devices to choose from, at various prices, to suit our needs.

I really like the concept, but I don’t think this is something I’d buy. Busy people do not need another device to carry around that costs as much as their cell phone. The article mentions an iPhone application that is currently in the works by the same company. Now, this is more appealing… especially since I’m looking for more reasons to justify plunking down the money for an iPhone.

I can definitely see the benefits of the Zuri, and I think it could be especially useful for caregivers. This article has inspired me to do a little web surfing to see what is out there that might help me capture my day-to-day health information. Once I find some other options, I will report back.

I am intrigued, though, and I think a device like this could really improve self-care. Kudos to Zume Life for developing something innovative!

NY Times Article on Zuri

Zume Life

Sjögren’s Is Second-Most Common Autoimmune Disease

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The New York Times recently ran a piece discussing chameleon-like qualities of Sjögren’s syndrome. I learned a lot from this article and wanted to highlight it here to raise awareness.

Sjögren’s symptoms often suggest a variety of other diseases, and doctor’s simply miss it. But things are changing.

No longer listed in the National Organization for Rare Disorders registry, Sjögren’s is now considered the second-most common autoimmune disease, right behind rheumatoid arthritis. On average, though, it takes six years to obtain a diagnosis. In that time, vital organs can be damaged. That right there is reason enough to highlight this tricky disease. I encourage you to read the full article here to learn more.

Six Tips For Managing Your Osteoarthritis

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Hello fellow arthritis friends! I have been under the weather lately and have been quite remiss in following my schedule of regular postings. I came down with a virus about two weeks ago, which kept me off my regular dose of Enbrel, which in turn cause a bit of a flare. Ah, the fun of having a weakened immune system! But I am feeling better and am back in action.

Here is a USA Today article to get you started with. This piece offers some basic solutions on managing osteoarthritis.

"Most people accept osteoarthritis as a part of aging and have this misperception that there’s nothing you can do," says Patience White, chief public health officer for the Arthritis Foundation and a rheumatologist in Washington, D.C. "There is no quick fix, but there are things you can do."

The six tips are as follows:

  1. Watch your weight.
  2. Keep moving.
  3. Treat your pain.
  4. Try a supplement.
  5. See a physical therapist.
  6. Don’t rule out surgery.

I’m adding a seventh tip: Know your disease. Learn all you can about your disease and the recommended treatments. Ask your doctor questions. Get second opinions. Talk to other people who have Osteoarthritis. It’s trite, but true: knowledge is power.

If you have a tip, please share it in the comments.