Even though many people tell me otherwise, I’ve never considered myself a writer. Having studied architecture and worked in multiple design disciplines, I’ve always thought of myself as a designer. I prefer drawing instruments over the keyboard, even though–as my RA progresses–my handwriting is becoming increasingly less familiar, and I continue to work my hands as best I can to preserve their already-lowered levels of precision and dexterity.
For me, a writer is someone like Lene Andersen. Fellow director of Show Us Your Hands! and well-known blogger, Lene loves to write–so much so, that I often tease her about her ability to massage words like few people can, to keep a sentence or paragraph in mind for days on end because it’s not “just right,” and to have an understanding of grammar that is almost encyclopedic. (Standing firmly in the “no Oxford comma” camp, I can already see her getting ready to mark up the sentence prior to this one!)
As Lene and I became friends over the past couple of years, I often heard make references to “the book.” Just by knowing Lene’s personality and with seeing how much work she was putting into this project, I had no doubt that the results were going to impress. It was with such eager anticipation that I welcomed the release of her book, “Your Life With Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects, and Pain” earlier this year.
Even though I was in a world of pain when this book hit my Kindle account, and was getting ready to relocate to New York City for a few months to try to get my own RA under control, I immediately sat down to read Lene’s book…and I’m glad I did, because within some of the first few pages, I encountered her trademark sense of humor that has made me chuckle on more than one occasion.
When I was growing up, the treatments used to control rheumatoid arthritis were limited to steroids and injections of gold salts — yes, that gold — injected in my rear and no, my arse didn’t suddenly increase in value after the shots. By the time we entered the new millennium, a number of other medications had been added to the list and a quantum lean in RA treatment was underway.
I read words that spoke of where I knew I wanted to be, even though at that time it felt like I was worlds away from ever reaching such a place…and when I now look back and realize how far I’ve come in managing my RA over the past half year, I can only smile at the thought of how much this book has helped me during this recent journey to wellness.
Once you’ve come out of a flare and gotten your life back, you can go through your days with the awareness that a relapse is possible at any moment. I call it “living under the shoe.” RA is an unpredictable disease, and when you’ve shared your life with it for a while, waiting for the other shoe to drop becomes part of you. A superstition develops, a reluctance to say the word “remission” for fear that it will jinx you and bring the RA back with a vengeance. Many of us will verbally turn ourselves into pretzels rather than say the R-word. Instead, we say that our RA is “managed,” “under control” or suppressed” and knock wood every time we talk about it.
As much as I continue to learn that slowing down is a big part of my coping well with this chronic illness, I also know that slowing down is one of the most difficult things in the world to do, even when I see the benefits that doing so delivers. Lene addresses this issue in a way that is not only right on point, but that also speaks to just how complex something as “simple” as slowing down is for those of us who live with rheumatoid arthritis.
…it’s essential to learn to pay attention not to the tasks of the day, but instead to your body’s opinion of them. We are so used to being in constant motion that the idea of doing only what is good for our bodies is something we plan to do when we retire. Backing off and doing less, either because you can’t physically do what’s required or because you choose to slow down, can feel like giving up or being lazy. Sometimes those around you also notice and join in what can only be described as a judgment party. Not only is the voice in your head berating you for slowing down, but sometimes the people in your life start questioning you, too.
One of the best parts of reading this book was coming across powerful words of wisdom, nestled into paragraphs here and there…words that deserve to be printed out in large bold text on a single page of paper, and taped above a desk or next to a mirror.
Learning to pace yourself takes time. It means putting your own needs first, something we often instinctively label as “selfish” and therefore undesirable. It isn’t.
And then there are parts that make me wonder: why didn’t I ever think of that before? Take, for example, the use of “Mandatory Rest Period” instead of “nap.” Absolutely brilliant.
With [a] nap, I have the energy I need to get through my day and, most of the time, pain that is easier to manage. To shut people up who remarked on how lovely it must be to be able to nap — thereby inferring that I have nothing better to do — and to emphasize the necessity of the rest, I changed the language I used. I stopped using the word “nap” and instead now call it my Mandatory Rest Period.
“Your Life with Rheumatoid Arthritis” isn’t just full of helpful hints, advice, and tips that would have significantly shortened my RA learning curve had I know them in the days, weeks, and months following my diagnosis. (Even having lived with this disease for almost a decade, I still felt like I was ahead of the curve when I finished reading this book.)
“Your Life with Rheumatoid Arthritis” is also full of understanding, and of truth.
Learning the tricks to manage your RA pain comes with time. You can help the process along by staying committed to living your life as fully as possible. When you put your life first, it creates an expectation within you that achieving manageable pain is possible. This helps you pursue solutions from a position of empowerment. And best of all, it means you’re out there, living your life regardless of the pain.
Most importantly, “Your Life with Rheumatoid Arthritis” is full of hope.
Hope. Emily Dickinson called it “the thing with feathers,” and it is what allows you to spread your wings and fly. Nourish the hope within you, look forward, never back, and every day, practice seeing the beauty and joy in life. It is all around you.
Thank you Lene, for writing such an encouraging and helpful book. I am honored to call you my friend.
Until September 30, 2013, 50% of royalties from every single copy of “Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain” will go to Show Us Your Hands!, a nonprofit charity organization that serves to unite and inspire people who live with inflammatory arthritis.
“Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain” e-book edition is available at all Amazon sites, Nook, Kobo and iBooks. If you don’t have a Kindle, you can download the free Kindle app from Amazon. The paperback is available on Amazon and CreateSpace.
For more information, please visit www.yourlifewithra.com.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!