If you could help someone else through the shock and dread of an unexpected rheumatoid arthritis diagnosis and its aftermath, you’d try, wouldn’t you? I know I would. I only have to remember my own bewilderment 27 years ago when my doctor said “You have rheumatoid arthritis.” Looking back, I’d have given anything to talk to someone who had experience with this disease beyond a brief rheumatology course in medical school.
Well, offering help for RA newbies is exactly what Lene Andersen has done with her book, “Your Life With Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain.”
Except she’s done far more than “try.” The book Andersen wrote isn’t just for newcomers to the unpredictable world of rheumatoid arthritis. It’s an eye-opener for us old hands, too. And no surprise, really. Andersen shares a literal lifetime of first-hand experience on coping with RA. She knows of which she writes.
“Your Life With RA” is an amazingly thorough primer on this nefarious autoimmune disease. It doesn’t just skim the treetops of the subject, it gets down into the weeds, answering with frank directness the questions most of us who have this disease wish we’d asked back when we were first diagnosed. Like “What is RA?”
She explains, briefly, that RA is an autoimmune disease that causes inflammation in the joints. Right. I remember my poor doctor, a young Army internist, telling me that, and how I accepted it without question. Well, I was stunned speechless. Only very elderly people had arthritis! It wasn’t until much later that the obvious question came to me. What does “autoimmune” mean?
Andersen answers this question directly, too.
“When you have an autoimmune disease, it means that your immune system gets confused and attacks your body. Instead of protecting you, your immune system undermines your health.”
And she goes on to explain about how RA attacks the synovial tissues that surround the joints—and similar tissues that line certain organs—and other eye-opening details.
How I wish I’d had this book back in 1987. And how fortunate for the more recently diagnosed that “Your Life with RA” is available now! Looking RA up on the Internet isn’t hard by itself, but it can be hard to separate the carefully researched, credible information from the vast jungle of flashy webpages that shout their uninformed opinions and myths and hawk folk remedies and miracle cures for RA.
Andersen’s “Your Life with RA” is that credible, well-researched source of information.
She explains, with humor and in detail, about the various types of medications used to treat the disease, the side effects you should be aware of from mood swings to high blood pressure to weight-gain, and ways she’s found to help you cope should you find yourself facing any of them. She also covers the very rare but far more serious side effects that some RA meds cause in what she calls “the scary chapter.” It’s good information—and foretold is forewarned.
Finally, Andersen talks about the 300-pound gorilla in the room: pain.
For most of us, inexplicable pain is the first indication that something is going wrong. Mine was a couple of incredibly painful fingers that prevented me from hand-writing notes during a conference I attended in Frankfurt, Germany. I had no idea what I’d done to them. The next day they were just fine. A few weeks later, excruciating pain in my right foot pretty much ruined a getaway weekend with my husband. Silly goose, I chided myself, you know better than to go sightseeing on foot in new shoes! But the shoes hadn’t hurt my feet at all when I’d tried them on.
When the mystery pain temporarily disabled a shoulder (making getting ready for work more than a little difficult), then a knee, and then settled into both feet for the duration, I’d run out of possible explanations—and excuses. I finally went to the doctor. And he had a diagnosis of RA for me less than a week later.
Andersen addresses RA pain with a section in her book she calls the “Pain Management Toolbox.” In these pages she discusses the physical pain that we all have to deal with and offers a number of ways to cope with it, from taking painkillers to ice packs to meditation. She notes, as well, that pain can be more than physical:
“One of the most important tools [for coping with pain] is your attitude … The experience of pain can be paralyzing and can fill you with fear. Putting pain in perspective is the beginning to finding your way out of that fear. Coming to understand that pain isn’t the worst thing that can happen—not living your life is—will help you more than you can imagine. Remember that, even if you have a lot of pain. Find some part of the day that belongs to you alone, that represents your life. It will help you fight back.”
So will Andersen’s book. It’s not the end, either. She’s busy writing Volume 2 of “Your Life with Rheumatoid Arthritis” right now.
“Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain” is available as an e-book for Amazon Kindle, Kobo Readers, Barnes & Noble Nook, and Apple iBooks .
You can purchase the paperback from Createspace, Amazon, and Barnes and Noble.
Finally, you can learn more about Lene Andersen by reading my January interview with her here. And don’t forget to check out Andersen’s award-winning blog, The Seated View.
Excellent! A book for children with juvenile rheumatoid arthritis would be great too! When I was diagnosed I was nine…. you can imagine the questions I had!
Have reblogged this. Like you, I wish I’d had a book like this back at the beginning. Will go and buy it now.
I have it on my Kindle, I’ve read it and love it! It will remain my reference book as I’ve referred back to it many times. I’ve even highlighted parts to discuss with my Rheumy. Since my Kindle accompanies me to my infusions, I can easily pull up my talking points without having to remember to bring a list. I was diagnosed with a mystery autoimmune disorder back in 2005 but RA wasn’t the diagnosis until 2011. So, RA and it’s management, is relatively new to me. This book definitely helps fill in some blanks.
Thanks for this wonderful, in-depth review, Wren. I just added this book to my Kindle library. It’s true that so many questions surround you in the beginning, you don’t know what to think to ask. And you do try to rationalize away your symptoms. I find now that I blame every little twinge on RA!
My mother had contracted rheumatic disease since childhood, now he was already 60 years old
sorry to see her pain when it comes
Really a nice review of the book, Wren. My aunt is a patient of rheumatoid arthritis and this book might prove effective in managing pain.
I agree Michelle; a really great review of this book!
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