rheumatoid arthritis

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.

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.

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!

I’ve had RA for 11 years, yet I still need to be reminded to be good to my body and not overdo it. Two weeks after the Juvenile Arthritis Conference, feeling more committed to taking better care of myself, I went down to San Diego for the annual monstrosity that is Comic-Con. For those of you who have never been, the convention is a gigantic world where comic books, movies, TV, collectibles (and more) collide to create a sensory overload. Trust me. It’s a whole lot of fun, but it means a lot of walking and standing. These lessons may seem obvious, but when you mix Rheumatoid Arthritis with stubbornness… well, you guys understand.

The Lessons:

• Take regular sitting breaks to rest the feet.
• Don’t forget to take your medicine even if you get back to the hotel room late and just want to crash. Your body worked overtime today and the meds will help you achieve a better tomorrow.
• It’s okay to wear light colored sneakers (instead of your cute, but uncomfortable open toed heels) with dark jeans and a dressy black top because comfort sometimes must win over style.
• When your sweet boyfriend suggests taking a taxi back to the hotel, rather than walking a mile, don’t say, “I think I’ll be okay to walk.” The appropriate response is, “Thanks for looking out for me; that’s a great idea.”

How do you manage a long day of standing and walking? Leave your suggestions in the comments.

I stumbled across this fun li’l web tool (aka time-suck) the other day and tried it out by making a cloud with all the words that came to mind when I spent a few minutes thinking about how I manage my disease. Here’s my result.  I also used this tool to create a simple header for my blog until I get the snazzier one uploaded.

Create your own and post a link to it in the comments!

Wordle [via Lifehacker]