Okay, so while I would never intentionally welcome back increased levels of pain and disability on the path to Flareville (an interesting bit of trivia: a city with this name, derived from Flehwroken, actually exists in the country of Liberia), I figure that I might as well make the most of it, especially since their eventual return are somewhat inevitable.
And this is what I thought to myself late last night, as a shroud of pain once again wrapped itself tightly around my body. Over the past year, I’ve learned a very important lesson which I continue to put into practice: when the pain and disability seem to be taking over my mind and my body, I must use such a moment as an opportunity. This might seem odd to some people, I know…an opportunity, you ask? But for me, at least, each occurrence of painful symptoms, each flare, is indeed an opportunity. Not only is it a chance to get to know my body even better, but–and even more importantly–it’s a time to try to figure out which coping skills are helping me, and which coping skills aren’t. I then make it a point to strengthen the former, and eliminate the latter.
And after two months during which my symptoms and pain levels were quite low, instead of feeling anxious or scared about what was happening, I instead found myself taking lots and lots of mental notes. And yes, I did notice Fear lurking there in a shadowy corner, just waiting to be fed, hoping to take charge of the situation…but last night I recognized its presence, and then told it to get used to staying in the corner. I was no longer going to feed its ego, as I’ve so often done in the past.
What I focused on, instead, were the immediate feelings of isolation that I was experiencing. Like those movies where the physical space between two places is visually stretched apart, quite often that’s what if feels like when I’m experiencing some of the worst pain of rheumatoid arthritis; I’m on one end of this silly-putty universe, and the rest of the world is on the other end. And then, as it became more and more difficult to even connect with my own thoughts, as the pain greedily continued to demand all of my attention, I finally began to realize where these feelings of isolation came from. Yes, I was feeling disconnected from the rest of the world, but the underlying truth was that I was feeling disconnected from myself.
And just like that, I had my reward. All I had to do was stay connected with my thoughts, and stay connected with myself. I could not let fear, anxiety, or isolation take over. I recognized, and knew, what was going on in my body. I was calm, and I was at peace. And eventually, I drifted off to sleep.
And this latest lesson on staying connected, which went from “easier said than done”–before it was learned, to “oh, that was easy”–after it was learned, might have eventually happened somewhere down the road, but it would certainly not have taken place last night, had I not decided not approach the arrival of this latest flare with a sense of opportunity.
Over the past couple of months, as I announced each new flare-free week on Facebook and Twitter, I started to wonder what feelings of defeat I might experience, when this streak finally came to an end. Well, this happened last night…and I’m happy to share that I don’t feel the least bit defeated. In fact, I feel stronger, and more prepared, than ever before. Sure, I’d love to continue to not be in a flare…but learning to cope even better while I’m in the midst of a flare…well, this is a wonderful consolation prize that I’ll never turn down!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy
A little over a week ago, I posted a request for people to send me photos of their hands, in order to put together an inflammatory arthritis community collage. Originally I thought that I would receive around a hundred photos, or maybe even two hundred photos, if the response was really strong. In the end, I ended up receiving more than five hundred photos!
And what amazed me the most was not just the number of photos that people were sending in, but the personal messages that they attached to their submissions. I quickly realized that this wasn’t just a ‘simple’ collage project, but was in fact–for many people–much more.
Two main themes emerged. The first was the sense of community that people felt, as a result of contributing to this project. One of the goals of this collage was for it to become a symbol of the wonderfully supportive autoimmune arthritis community that continues to grow around the world, and in this regard these expectations were easily met.
The second theme that emerged really, really moved me. Yes, the inspiration for this project came from a previous blog post that I wrote about being proud of my arthritis hands…but I wasn’t prepared for all of the personal stories, related to this topic, that I received. Many people told me that they have been ashamed of their hands for the entire time that they’ve been living with autoimmune arthritis (and for some people, this has been for almost their entire lives,) and that for the first time ever, as a result of intentionally taking and sharing a photo of their hands, they no longer felt the need to hide their hands. These words, and the accompanying photos, moved me to tears. Not tears of sadness, but tears of pure emotion. Tears of happiness.
I know that this project will mean many different things to many different people. To some people, like Cecilia, “this project represents a form of healing, represented by an acceptance of my damaged body joints, in this case, my hands.” To other people, these images might be a bitter pill to swallow, as they might force us to confront certain fears that are inherent in the toll that these diseases take on our hands; hands which are simultaneously private and public parts of our personal selves.
It’s been a pleasure to work on this project over the past week, and I’d like to thank each and every person who contributed photos and who helped make this collage a great success. So now, I’m happy to finally be able to share the results of ‘Show Us Your Hands!’:
A new website, which will be completely dedicated to this new project. The home page contains a digital collage, which will continue to grown in the future as even more people submit their photos. Every time this collage is loaded, the photos are displayed in a new random order. You can scroll up and down, and see all of the images as a whole. Or, you can click on any individual image, and look at each photo more closely.
A commemorative poster, which proudly displays the first 483 hand photos which were submitted to this community collage project. All of the net proceeds from the sale of this poster go towards the hosting costs and operating expenses associated with current and future projects of ‘Show Us Your Hands!’, an international awareness movement which serves to unite and inspire the inflammatory arthritis community.
A link to this new website is included below. While you’re there, please don’t forget to sign the guestbook…I’d love to hear everyone’s thoughts and reactions to this community awareness project. Thanks again for all your help!
“True RA Christmas Facts: Did you know that gingerbread men are really just stick figures on prednisone?” —RA Guy
Around ten years ago, I started the tradition of baking gingerbread men in the days leading up to Christmas. Not only do I love anything that includes the flavors of ginger, cinnamon, and clove mixed together, but I also really like the thin lines of royal icing that add just an extra little touch of sweetness to the cookies.
As my rheumatoid arthritis continued to progress over the past few years, however, the first thing that I removed from my holiday to-do list was the baking of these cookies. Sure, I missed them (and store bought versions will never be able to replace the homemade kind,) but I just felt too tired all the time. And the last thing I wanted to do was stand on my feet, and use my hands any more than absolutely necessary.
Over this past year, though, even as I’ve slowed down drastically, I’ve actually found ways to do even more than I’m used to doing. For me, the secret comes down to breaking up ‘large’ tasks into numerous ‘smaller’ tasks, to be completed over a period of days or weeks. (Seemingly so simple, but such a hard lesson to actually learn.)
And by following this new-found secret, this year I once again find myself making gingerbread men. Instead of doing it all in one day, as I previously did, I’m now spreading this activity out over three days. Today I made the dough. (Two batches are currently chilling in the refrigerator!) Tomorrow, I’m going to bake the cookies. And on Friday, I’m going to frost them…just in time for Christmas Eve.
Every time I make gingerbread cookies, I’m taken back to first grade. Having just read the story of the gingerbread man, we went to the kitchen/activity room in the elementary school in order to mix up a batch of cookie dough. Each one of us cut out a cookie, decorated it with raisins, and placed it on the cooking sheet. As soon as everything was in the oven, we went back to the classroom to wait the few minutes that were required for the cookies to bake.
Any good educator or parent probably should know what happened next. When we returned to the kitchen and peeked into the ovens, all of the cookies were gone! Where did they go, our teacher asked. A person who just “happened” to be walking by the door stuck his head into the room, and told us that he had just seen a bunch of gingerbread men running down the hallway a few minutes earlier.
Instead of questioning the reality of such a thing, all of our imaginations took over. We were so excited, and really believed that the cookies had run away. I still remember thinking that if we had only gotten there a couple of minutes earlier, we would have been able to see them running with our own eyes. After searching around the school for our cookies, we finally found them in a safely collected in a box in the principal’s office.
Rheumatoid arthritis used to bring so much negativity into my life, and often seemed to rob me of the activities that I enjoyed the most. As I look back at those moments of pure happiness when I was a little kid, envisioning the gingerbread men running away, I’m reminded of the important role that imagination continues to play in my life.
I no longer imagine a life without pain, as I once used to. (I just don’t find such thoughts to be helpful anymore.) But I do envision myself doing all of the (abandoned) activities that once bought so much joy into my life. I may not always be able to do these things exactly how I used to…but with a little adaptation here and there, I’m discovering that I can actually do much more than I previously thought was possible, without pushing my body past its limits.
All it takes…is a little imagination.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
December 23, 2011: Three days later, and five dozen gingerbread men are done!
Shed Your Worries and Focus on What’s Most Important
Dating can be an intense experience under the best of circumstances. If you have physical limitations from a medical condition, such as arthritis, you may be apprehensive about the dating process, but relationships and dating are part of life. With the right perspective and approach, dating can enhance your life.