Out Of Joint

RA Guy Adventures of RA Guy 11 Comments

outofjointOut of Joint: A Private and Public Story of Arthritis
by Mary Felstiner

More info from Amazon.com

“A startling, poignant depiction of the progression of arthritis and of the person who is afflicted. Written from the heart with great lucidity and power, this book will alter forever the way you think about chronic illness.”

–Irvin Yalom, MD, author of The Schopenhauer Cure: A Novel

A few years ago – when I still had no clue what rheumatoid arthritis was – I woke up one day (it was around this time of the year, actually) with an enormous amount of pain throughout my entire body. Wow this is some whopper of a flu bug that I have! Never having experienced so much bodily pain in my entire lifetime (I was in my early 30’s) I assumed that the only thing that could explain so much pain was the flu – and a really bad flu, at that.

As each day went by things got progressively worse. I was confused that my continued bed rest was not helping my body heal; in fact it seemed like the more bed rest I got the more things hurt. About a week later, I remember saying at the dinner table: “Something is seriously wrong with me – nothing is supposed to hurt this much”.

As luck would have it, I was scheduled to take off for a six-week trip in just a couple of days. With no time to see a doctor, I turned to Google (of course). This was not the first time I had experienced pain – just a few months before I was on-again off-again with my knees, and had already purchased both a cane and a set of crutches. What was new this time around was the feeling that the pain seemed to be in every joint in my body.

I had been Googling “arthritis” for quite a while. But do you want to know something funny? Every time I passed the part about osteoarthritis and got to the part about rheumatoid arthritis, I would just stop and move on to the next page. Like clockwork. (I had a few months earlier read a paragraph on rheumatoid arthritis –  but it just seemed so complicated – immune system disorder? That can’t possibly be what I have.)

A day or two before I set off on my travels, for some reason I still don’t fully understand, I ended up on a rheumatoid arthritis symptoms page and decided to actually give it a read. Symetrical pain in the joints. Check. Swelling. Check. Fatigue. Check. Morning stiffness. Check. And the list just went on and on… (I still remember the moment with so much clarity,) when I first told another person “I think what I might have is rheumatoid arthritis”.

Fast forward a few weeks into the future, and I am in The Green Apple – my favorite used book store in San Francisco. I can and have spent many countless hours going through the large bookstore section by section. While browsing the disease book section, I came across a copy of Mary Felstiner’s “Out of Joint: A Private and Public Story of Arthritis”. As I flipped through the book and read the covers, I once again thought (and I still remember the moment with so much detail as I stood in the bookstore): this is so eerily similar to what I seem to be going through. Into my shopping basket it went.

I started reading the book soon after, before I returned home from my trip (which also means before I had a chance to schedule my first appointment with a rheumatologist). I think I read it in a day or two; it was a book that I could not put down. When I finished, there was only one thought in my mind.

This is what I have?

Notice the question mark – doubt. There is no way I could possibly have this thing called rheumatoid arthritis. It just seems so scary and severe.

Of course, just a few weeks later, I was diagnosed with rheumatoid arthritis.

After I received my diagnosis, my mind was reeling for quite a while. On one hand, I was happy that we finally knew what was wrong. Maybe now there was some hope that we could fix what was wrong. On the other hand, every time I read more information about rheumatoid arthritis, I felt more overwhelmed and just cried and cried. Chronic? No cure? What does that mean to my future?

During this post-diagnosis period, I remember feeling that I needed something, anything, to ground me. One day I saw “Out of Joint” on my bookshelf, and decided that I would read it again – this time from the perspective of someone who knows that he has rheumatoid arthritis.

The second read was probably even more difficult that the first read.

This is what I have!

Notice the exclamation point – shock. Even though I did still did not want to believe it, little by little the realization and acceptance of my diagnosis of rheumatoid arthritis began to seep in. (This denial/acceptance cycle would eventually repeat itself many times in the coming years…as soon as a bad flare passed, I wanted so much to believe that my rheumatoid arthritis was gone, that I would actually believe it. Until it returned and knocked my house of cards over once again…)

I have returned to this book many times during my first few years of living with rheumatoid arthritis. Before the blogs, it was one of the few personal stories I could find of an individual living with RA. Now, when I read the book either start to end or section by section, I return the book to my bookshelf with a little more peace of mind, and with only one thought.

This is what I have.


Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 11

  1. Millicent

    You are a master writer! This is an astounding post. Acceptance enables progress, wherever that progress may lead.

  2. Kim H.

    Thanks for this entry.

    It was jarring in a thoughtful and moving way.

    Perhaps because I have seronegative RA — along with symptoms that are not “classical” (subtle swelling, generally good CRP and ESR levels, etc.), I sometimes find myself alternating among the stages you present (despite the facts that ultrasounds and xrays clearly indicate the presence of disease, that I have made life changes to accommodate my illness, and that Enbrel seems to help a great deal). Emotionally speaking, I often wish I could just “move along” and “get on with it.”

    And yet, there are these two traits — denial and hope — that make it difficult to do that. I’m slowly moving past the denial.

    But hope is more difficult to give up.

    Perhaps because this is so, I find that the quality of my hope is changing — from one that cries out that I do not have this crappy disease to one that urges that while my life and body may not be filled with roses, neither may they be filled completely with stinkweeds. A nice peony will do every now and again.

    Sorry for the rambling. And again, thanks for the entry.

  3. Miss Waxie

    RA Guy, I think your real superpower may just like in your superhuman ability to make really thoughtful, engaging posts on a nearly daily basis.

    I’m impressed as always.

    – Miss Waxie

  4. Cathy

    Wow! We do go through all those steps, don’t we? The question marks, the exclamation marks and finally the period.

  5. Jennifer

    Thank you for another book to read. I love reading and it helps me to get through the night when I am in pain. So I have ordered the book today (even though it did prove to be a bit difficult here in OZ). I should have my copy with within the next 2 weeks.
    Another book you might like is called ‘Another Alice’ by Alice Peterson. She was an up and coming tennis player that was diagnosed was RA. Now she is a spokes person for the UK Arthritis Foundation. An excellent read to the point I cried in parts as I understood what she was going through.
    Keep up the great blog!

  6. Jennifer

    Just another thought. Another great book is ‘Send Yourself Roses’ by Kathleen Turner. It is about her career as an actor but she does talk about having RA.
    A book that was read to me about year prior to me being diagnosed with JRA was ‘Jodie’s Journey’ by Colin Thiele. Now it is a kids book and I was 12 when it was read to me in class but I remember thinking eww that sounds horrible I never want to have that. A year later I was diagnosed with it. I meet the girl about 2 years ago that the book was dedicated to in a support group meeting and she said she written to writer asking him to write a book on RA and he did!

  7. Post
    RA Guy

    Millicent, thank you for the kind comment! (As a designer I’ve always drawn, so this whole writing thing is new for me. I’m liking it.)

    Kim, I agree that we need to not lose hope, but instead add a little realism to our expectations. Great metaphor, thank you.

    Miss Waxie, thank you. I love your comics as well. For readers who haven’t done so, be sure to check out Miss Waxie’s blog at http://acomiclifeindeed.wordpress.com/

    Cathy, coping through punctuation. Sounds so easy that way, no? Cathy’s blog deserves a call out as well – http://www.thelifeandadventuresofcatepoo.blogspot.com/ She presents a beautiful world of motherhood, homeschooling, and holistic and mindful approached to dealing with RA.

    Jennifer, thank you so much for the book suggestions. I have posted them on the front page, and was motivated to start a new “RA & The Arts” page to keep track of these resources. Thanks again!

  8. Robert

    Another great read is “Living with Arthritis” by world-renowned Doctor Christiaan Barnard, the famous heart transplant surgeon, who suffered from RA since his youth. There are some great tips and home remedies in there from the famous prof which I’m sure you’ll find invaluable.

    Definitely worth the read.

  9. melindawinner

    I also suffer from RA, osteoarthritis, RSD, fibro and now DDD. It gets tiring to say the least. I also have accepted my disease. I found your story very moving, it touched my heart . Keep up the good work! I hear from many woman on my arthritis site but only a handful of men. I am very glad to hear it from a male perspective.

  10. khewitt

    Im actually about three-quarters of the way thru this book. Its amazing that I sit there reading and in some parts I’m like….”Hey thats me!” I will admit it was a little rough getting into but I read it every night when I get home from work just to see “what happens next.” I would recommend this book to anyone with RA or their spouses/partners. It really does capture what is going on in our bodies and gives a possible glimpse into things that may come. Thanks for the recommendation RA GuY!

  11. Agatha Roach

    Excellent blog! We do go through the acceptance and denial many times as the disease does its work on us, day by day and year by year. But some how, some way, we are survivors and we keep going! God bless us, each and every one!

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