Raising Awareness

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

I wimped out. Here I thought I was finally feeling comfortable enough in my arthritis skin that I could discuss it with almost anybody, but when I stared straight into the face of a perfect opportunity to "share my story." I totally wimped out.

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.

What Happened During the Lame Duck Session

A note from the Arthritis Foundation:

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.

Resolve to get involved next year!!

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.

Below is a portion of an email from Chief Public Policy Officer at the Arthritis Foundation National Office in Washington DC, Amy Melnick. The email was written in response to Larry and Juanita Stuart’s story that was highlighted on Barak Obama’s 30-minute primetime special:

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

During president-elect Barak Obama’s 30 minute special that ran the week before the election on multiple national TV networks, he highlighted the struggle that Larry and Juanita Stuart of Ohio face on a daily basis: Juanita has rheumatoid arthritis and their mounting health care bills have forced Larry out of retirement that he had worked so hard to earn.

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.

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

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.

Hello loyal readers and new friends! I greet you with great news from the Arthritis Foundation:

The unbelievable and miraculous has occurred – we have just gotten word that the US House of Representatives has scheduled a vote expected tomorrow, Thursday on the House floor on HR 1283, the Arthritis Prevention, Control and Cure Act. Thanks to all of you for your hard work these past 5 years, but your work is not yet done. We need to make sure that if a recorded vote is requested and taken on this bill that 2/3 of the Members of the US House of Representatives vote YES. Being a co-sponsor of the arthritis bill does not guarantee a Member of Congress will vote YES when it reaches the floor, nor does a non-co-sponsor indicate he or she will vote against it. For those of you with Members of Congress who have not co-sponsored but have indicated they would vote yes when it reaches the House floor, now is their chance to support the bill.

PLEASE CALL YOUR REPRESENTATIVE ON THURSDAY MORNING OR AS SOON AS POSSIBLE AND ASK THEM TO VOTE YES ON HR 1283, the Arthritis Act. Offices will be open from 8:30 am- 6:00 PM EST. We need all of you to please call the Capitol switchboard at (202-225-3121) or call your Member directly and ask him/her to VOTE YES tomorrow on the Arthritis bill, HR 1283.

This is truly exciting news and we will keep you informed as the day progresses.

This link will prompt you for your zip code so you can easily determine who your representative is. You’ll also receive contact info for your rep. I’ll be calling first thing in the morning! Who’s with me?! Let’s DO this!

For more information on the Arthritis Prevention, Control and Cure Act, click here.

Happy Thursday all! This is a fun, short video about chutzpah, the Canadian health care system, and a hip replacement. Enjoy.

Here’s the link in case the embedded player doesn’t work for you.