August 2009 letter
Meaningful words dealing with the health care issues we are facing in the USA
I joined the world of "Fibromyalgia" two weeks ago, with a diagnosis from a Manitoba Rheumatologist (I grew up on a farm, so, to me, a rheuminate was a bovine or "cow" - this medical specialty was a new one to me!). He ruled out other forms of arthritis, told me there was no cure, advised me to stay active, and told me to contact the arthritis society. There are not programs in my area. Sigh. Getting child care to drive in to Winnipeg (our nearest city) is not easy, and there is no financial assistance to pay for the activity programs or the child care.
So, after 5 years of being told "the reasons for this pain is all in your head" - "there is no reason for you to be reporting such pain", NOW it is confirmed that there is a reason, but no cure - only management. Try explain that one to a 5 & 7 year old. Momma cannot run, jump, or ride a bike. Some days, walking is difficult. But then the pain goes away, or "shifts", and I can move again. Very strange. But I am too young and still too "healthy" to qualify for any assistance. Luckily, my very good and astute laywer was able to get my long term disability when it became clear I could no longer perform my job duties. But it is a constant battle with insurance companies. I told a recent panel on women's health that it is too much work to be sick in this province!
That was another thing that drew me to your work, Nancy. I recognized the struggle. You gave voice to so much that I was trying to explain to others, and it was amazing to read my experience and my understanding in your words.
And if I didn't already tell you this part, I was able to use your poems to talk with my Grandmother in her last months when her mind was fading and she was losing her verbal abilities. I watched the medical system dealing with her in her last two years, and it gave me the strength to stand up and say "pay attention to me!" (You are standing on Holy Ground!) when I started having the same trouble she did. They were never able to manage her pain. She had been a strong and resiliant woman, defender of family and country, and she would have to spend her final years in bed in pain? They siad it was just because she was old. At my age, they are content to call it mental illness. My sister (two years younger than I) and I started having similar symptoms about the same time. When we did a thourough medical family history, we were shocked! and much more demanding of our doctors. Will is bring us any better result? We will see.
Back to Grandma. I took a few of your simple, illustrated poems, and used them to talk to her. And we discussed how hard it was to be living like this, and how hard it was to understand God in all this. And then I would take a hymn book, and she would sing along with me. I was glad to be able to be that close to her. We had shared many times together, and I was glad to be able to connect with her in those last few months. I still miss her presence and her wisdom so much.
I'm glad I got to know your work. I will send an order soon,
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