A DAY IN THE LIFE OF RA. . . .m
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|Tue, 03-25-2003 - 1:22pm|
I think this is a wonderful idea! Let's start it now, so that it can help people with all of this. I will document my day tomorrow--which should be especially good since I am in a pretty good amount of pain with these weather changes. Everyone is welcome to do the same, so that we can help one another out. I agree with Vicki that it is great to bring your dh to the appointments with you. I will certainly do that when Gabe and I get married. I will post the name and a synapsis of the book Sandra referred to in her post:
In his book Beyond Chaos: One Man’s Journey Alongside His Chronically Ill Wife, Gregg Piburn – a husband, father and “caretaker” – weaves together the vignettes of his life trying to make sense of the 14 years since his wife got fibromyalgia. Here is an excerpt exploring his thoughts on being the well spouse of a woman with chronic illness.
Beyond your marital relationship changing, your relationship with your children changes too. Your kids might not understand why you tire so easily. Children can also think that you are dying or that they did something to cause you to get sick. It is important to talk openly with your children about your disease, how it will change your family and what they can do to help.
As my wife came to the final turn, the Death Valley of the 440-yard dash, two women with slim bodies nipped at her heels. The other women’s slender legs stretched, hit and glided in unison. Sherrie’s legs were more muscular in shape, causing little explosions of cinder dust as they pounded the track.
All three were dead even into the 40-yard straightaway, until Sherrie kicked into a gear I didn’t know she had. The next day the local newspaper ran a photo of my 25-year-old wife crossing the finish line with the anguished expression of a woman in childbirth.
I can’t tell you the exact day the wife of my youth died because her death didn’t come nicely packaged with an obituary or a coffin. Sherrie still lives, but the woman I married, the woman who won races and climbed mountains, doesn’t. Once I mentally put “the healthy Sherrie” to rest and grieved that loss, then and only then, was I able to journey with Sherrie beyond the Death Valley of our marriage and our lives.
So began an essay by Gregg Piburn that Arthritis Today published in 1994. Since then, Piburn has continued to explore his role as the well spouse married to a woman with chronic illness. His wife, Sherrie, was 31 in 1985 when she came down with flu-like symptoms – exhaustion, muscle pain and migraine headaches – in addition to depression. Piburn says, “We expected the symptoms to go away within hours or days. But they did not.”
Five years later, doctors finally determined that Sherrie had fibromyalgia, a musculoskeletal disorder that affects the muscles and muscle/bone connections. Her fibromyalgia symptoms have fluctuated over the years but have never vanished. To complicate matters, she has also undergone two major gynecological surgeries and three spine surgeries, none related to fibromyalgia.
In his book, Piburn has gathered thoughts, feelings and experiences from his life with Sherrie and their three children. Here, from his book, is a collection of essays on the theme of the “caretaker”/partner.
Here's a link to more information on this book:
So dear Holly, I will put in my day in the life of RA for you tomorrow!
Love to you,