Books, Rheumatoid Arthritis

Book #38: The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed

I've been a reader since before I can remember, and whenever I have a concern, a challenge or a new situation, I turn to books. After my diagnosis with Rheumatoid Arthritis, I turned to Amazon and began looking through titles. Because there has been so much progress in the medications in recent years, I only considered books published fairly recently. The first one I read was reviewed here. Written by a doctor with some assistance, it intends to empower patients by enhancing their knowledge, but it's full of depressing patient stories.

The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed, by M.E.A. McNeil, carries another subtitle attached to its series–"A Patient-Expert Walks You Through Everything You Need to Learn and Do." The difference here is in that "patient-expert" involvement. M.E.A. McNeil is probably my new hero. First diagnosed before the new medications became available, she lived one of those nightmare stories (bedridden, wheelchair-bound), but responded well to the new treatments and has a more active life now. When she tells you to balance rest and exercise, you believe it, because she is speaking from inside the condition, not looking down on it from on high or from so far outside that it's a concept rather than a reality. She is a scholar, an author, a mom and a wife, a person who knows what it feels like to clean the house or to wonder if you'll be able to do your life's work the way you had hoped.

In some ways it's like What to Expect, a series I loved back in the day when I was having babies because it was so matter-of-fact, even about awful possibilities. McNeil's writing encourages while being realistic. I found it very helpful. Here's the quote I found most helpful, so much so that it's in the sidebar :

"Useful metaphors for RA are those that don't hold us at fault."

Yes. I'm reading Sontag at the moment, but I'm still not ready to give up on metaphors completely. As I said in a comment on a recent post, I'm still working on finding mine. I can't make sense of this, or find a reason for it, but I can try to find a way to live with it that helps me do as well as possible under the circumstances. McNeil is helping. I can see this is a book to which I will refer, often.

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7 thoughts on “Book #38: The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed”

  1. Thank you for writing about RA. My #2 daughter has this and has been put on methotrexate, really against her will. She is a bilingual kindergarten teacher, and lives with a chronically infected sinus system. Not sure she can make it with a suppressed immune system. Children sneeze and cough all over her all day. I pass your information on to her. Maybe we can all help each other. I’ll also pray for your disease to go away. After all, this is the best thing we can do.
    weaverwoman

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  2. One of your many talents, Songbird, is your ability to take us through how you live life. Please know that though your RA may not go away, your sharing how you live through, around, and with it teaches all of us important lessons. Thank you for that.

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  3. “Useful metaphors for RA are those that don’t hold us at fault.”
    Amen to that!
    So many chronic conditions seem to come with an unspoken, presumption of fault on the part of the sufferer. “You must be too stressed. You need more exercise, more sleep, less work, more work, whatever….”
    I think all that blame the victim stuff is about fear. If those of us who live with chronic illness are doing something “wrong” – even metaphorically – then that means everyone else is okay and off the chronic radar.
    Thank you for writing about this. I can’t put my own situation into any meaningful form these days, so this is really helpful.
    Praying for you as always…

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  4. Thanks, Sue, and of course I am praying for you, too.
    Katharine, that’s the upside of being naturally (and at times overly) transparent!
    And Mary Jane, I cannot imagine being on this drug and working in a kindergarten setting. I hope they can find something else for your daughter. It seems we have to “prove” that methotrexate isn’t enough in order to gain access to the newer drugs; on the other hand, my Rheumatologist says over 50% of his patients do beautifully on methotrexate alone, so it’s good when it’s the right med for the person.

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