I think we’d all like the world to become a more arthritis-friendly place. To that end, I came up with a list of nine things that could set that idea in motion this year.

1. Our own reserved parking spot in front of our Rheumatologist’s office.
2. Prizes hidden in prescription pill bottles. If Cracker Jack could do it with popcorn, why can’t Pfizer do it with Celebrex?
3. Seats on rides at theme parks should have more cushion. Most notably, the Matterhorn at Disneyland.
4. A rewards program for Enbrel patients. Buy 11 months of Enbrel, get one month free. After all, at $350(ish) a month on COBRA, the makers of Enbrel are doing better than most drug lords in Columbia.
5. To be able to earn points for each prescription ordered through the local pharmacy — points that could be used to purchase an Amgen beach towel or an Arthritis Foundation wind breaker.
6. I’d like better food at the Dining Hall at Camp Esperanza , a camp in Big Bear, CA for kids who have arthritis. Plus, I’d like to witness better pranks. Shaving cream is so five years ago and I know the kids can be cleverer.
7. I know all women agree with this, but especially those of you with arthritis — I want more women’s shoes that look cute, are uber-comfy and not frumpy.
8. Don’t you hate it when people give us dirty looks after we park in a handicap space with our placards? I want a special badge that says: “I have arthritis, you bastard, so piss off!”
9. On more serious note, I’d like to see more arthritis awareness raised and hear fewer people saying, “But you don’t look sick.”

Okay, now it is your turn. Add your wish list via the comments!

Here’s to a happy and healthy new year for all!

Be well,

Sheryl

Note: It’s been a few weeks since this incident and since I began writing this post, and I have mellowed out and am not "beating myself up" so much for my perceived failure.

Here are the details of that day a few weeks ago: I was at lunch with three coworkers. One is aware that I have arthritis, but doesn’t really know the particulars beyond that. The four of us began discussing allergy shots, which led to a quick rant on how giving yourself or someone else a shot is icky and inconceivable. I agreed that it is icky, but I also wanted to share with them that when someone is given the option to feel better and it involves giving themselves a shot, you’d be surprised how quickly the squeamish muster the strength to pull the trigger and release the hounds. I am the poster child for this.

I talked myself out of sharing with them that I have arthritis about 10 times in a matter of a minute. I think the reason for this partially hinged on my mental state that day. I wasn’t feeling particularly confident. I was  also worried about their reaction to this information — would they ultimately understand why I was sharing this information with them? Maybe they would wonder why someone who looks physically normal would have to give themselves a shot twice a week? I hate feeling misunderstood. Would they feel sorry for me? I don’t want them to. Arthritis is just part of who I am.

< Loud sigh > Sharing your story and information about your disease is always complicated.

Determining the appropriate amount of information to divulge is a challenge.  Once you decide to open up about arthritis, then you have to decide how much to tell. I personally don’t want to overwhelm people with information about a disease they really can’t see. Often, no matter how much information we offer, people just don’t "get it" the way we wish they did.

Despite that, I believe there are a number of good reasons to make my battle with arthritis public knowledge. It allows people to get to know me better. It propels me to continually strive towards full acceptance of my disease. Discussing my chronic condition will raise awareness about this disease, especially the fact that it affects young adults and children. Maybe that awareness will eventually translate into research dollars or more compassion towards arthritis patients.

We know that when most people think of arthritis, they think of older people with crooked fingers. They don’t know about the fatigue or the chronic pain or all the maintenance medications that I happily consume even though one of them might saddle me with lymphoma some day.

For a long time, only a few of my close friends and some family members knew that I had arthritis. Back when I was diagnosed with arthritis I was a very private person. I wanted to control very carefully what people knew about me. On top of that, I had no idea what this disease meant to me personally.

As I write this post, I realize that I have a lot to be proud of. I am finding my niche in the world as a person living with arthritis. And the bottom line is that I am the most comfortable and confident as I have ever been as a young woman with Rheumatoid Arthritis. It will always  be a struggle to determine who to let in to my arthritis world and how much to tell them. The fact is, no one is truly going to understand the way we wish they would unless they are going through it themselves. In order to cope we need to be connected to people who understand life with a chronic disease. Arthritis warriors "get it" and that’s why we must stick together.

Thanks to all of my arthritis friends out there for their support and insight! You guys are the best.

The New York Times reports:

At its heart is serotonin made by the gut rather than the brain, whose role outside the brain had been a mystery. Ninety-five percent of the body’s serotonin is made by the gut, but gut serotonin cannot enter the brain because it is barred by a membrane, the so-called blood-brain barrier.

Dr. Karsenty reports, though, that gut serotonin can directly control bone formation. It is released into the blood, and the more serotonin that reaches bone, the more bone is lost. Conversely, the less serotonin, the denser and stronger bones become. Dr. Karsenty was even able to prevent menopause-induced osteoporosis in mice by slowing serotonin production.

Osteoporosis researchers were dumbfounded by the report.

Those same experts are quick to caution that while exciting, this research is "basic" — it was done in mice that were "engineered to have human genes." Researchers remain hopeful about the research that could follow that would drastically change the way Osteoporosis is treated.

Bone Finding May Point to Hope for Osteoporosis [via The New York Times]

As the 110th Congress winds down, we wanted to provide an update on the status of the Arthritis Prevention, Control and Cure Act (H.R. 1283). There was no Senate consideration of the bill during the November “lame duck” session. It is possible that Congress will meet again in December given the current economic conditions, so we will continue working to find any opportunity to make headway. At the same time, we are beginning to look ahead to the New Year with a new Congress and a new Administration. Your past efforts at reaching out to your Members of Congress have not gone unnoticed as evidenced by the unanimous House passage of the Arthritis Act in late September. The Arthritis Foundation will be calling upon all its advocates again to continue the momentum and push the Act through both the House and Senate next year.

Resolve to get involved! Click here to find out how to become an advocate.

The links above are not “hot.” Check out last year’s highlights here.

Has anyone attended this event? I would love to read your experiences in the comments. I’m thinking about going to Washington, D.C. this year to let my voice be heard.

The article mentions that this gadget would be useful for auto factory workers and people standing in long lines. I could definitely see this device being really helpful to us arthritis folks. Now, if we could only find a way to get our insurance companies to pay for it! Pricing and commercial product plans are still in the works.

Imagine a bicycle seat connected by mechanical frames to a pair of shoes for an idea of how the new wearable assisted-walking gadget from Honda works.

The experimental device, unveiled Friday, is designed to support bodyweight, reduce stress on the knees and help people get up steps and stay in crouching positions.

Kudos to Honda for thinking creatively! Can’t wait to see how this develops.

Earlier this week, we sent the attached letter to now President-Elect Barack Obama. The Arthritis Foundation will be working with the new Administration, and with the new Congress, on policies and legislation that will expand access to comprehensive health care to include preventive care, self-management programs, surgical interventions, rehabilitation services, and prescription medications for people with arthritis. We must work together, and with other like-minded organizations, at improving the care for people with arthritis. It truly was a watershed moment for people with arthritis to be featured on national television by a candidate running for our nation’s highest office. We plan on using this opportunity with President-Elect Obama and his new Administration to engage in substantive policy and advocacy work on behalf of the 46 million people, including nearly 300,000 children with arthritis.

Do you think it will be possible to find a cure for arthritis in my lifetime? My answer: Yes we can!

Read the letter that the Arthritis Foundation sent to President-Elect Barack Obama

I have empathy for Larry and Juanita Stuart’s struggle, and I also have deep gratitude for their willingness to share their story. Rarely is the topic of any form arthritis brought to light in such a grand scale. I hope that it helps to raise awareness.

If you have trouble viewing the embedded video below, click here .

Forward the video to 7 1/2 minutes to see the segment on rheumatoid arthritis.

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

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.