Friday, September 26, 2014

RA 101

Okay. I think that if I'm going to share my stories with you, it's only fair that I offer you some perspective on what these stories are about.

One of the first things that I learned about Rheumatoid Arthritis is that most people don't actually know what it is. There are misconceptions, even within the medical community, and confusion with other forms of arthritis and even with other diseases. So, to get us started off, I offer a basic primer on Rheumatoid Arthritis (RA).

RA is a chronic, systemic auto-immune disease. What this fancy phrase means, basically, is that the immune system goes haywire and starts attacking healthy body tissues as if they were disease agents like bacteria or viruses. This happens most frequently in the fluids that serve as cushions between the bones in our joints, but can happen to other tissues in our bodies, including our heart, lungs, eyes, and digestive organs. It is not just a few achey joints, it is a disease of the whole body. And once your immune system goes awry, it never goes back. The primary result of this malfunction of the immune system is inflammation, typified by swelling, heat, and pain in the affected area. Or areas. RA very rarely hits just one spot, but rather goes after multiple joints and organs.

Other body functions are affected, too. Most people with RA have malformed red blood cells, or far to few of them, leading to anemia. This, along with the chronic pain and the fact that your body is basically expending all its energy fighting the invasion of an enemy that doesn't exist, leads to chronic fatigue. The swelling of the joints also means that our body movements are thrown way out of whack. leading to all sorts of muscle aches and pains. Some RA sufferers also have other illnesses that piggyback with the RA, such as fibromyalgia, chronic tendinitis, Crohn's disease, or Sjogren's syndrome (the inflammation of salivary glands and tear ducts), which compound the pain and fatigue.

This is a lifelong disease. There is no cure.

It is estimated that between .5% and 1% of the population have this disease, making it relatively rare, but RA can attack anyone, at any time. The usual age of diagnosis is between 20 and 50, but children (including my own daughter) can have it and I recently met a woman who was first diagnosed at 72. This disease strikes predominantly women, but men get it, too. There is no known cause, though there have been recent studies that suggest a combination of genetic and environmental factors as the trigger. The symptoms of RA vary from person to person, and from day to day in each individual. There are days that I feel pretty good, then I wake up the next morning unable to bend my fingers without crying.

This is the biggest problem with having RA-the unpredictability of the thing. No one knows who will get it, when they will get it, which of the symptoms they will have, or when and where those symptoms will strike. This unpredictability makes treatment more or less and experimental process. There is no cure, but there are treatments that can reduce the symptoms and slow the progress of the disease and mitigate the damage done. Sadly, though, there is no way of knowing which treatments will work for who until the treatment is given. And all of the treatments come with problems of their own. All of the know treatments for RA focus on suppressing the immune system, which opens a whole other can of worms. Then we add in the side-effects that come with strong medicine, from dry skin to nausea to death.

In other words, this ain't no picnic.

For me, RA has shown up as inflammation in 57 of the 60 joints counted for assessment. (My elbows and my left knee were inflammation free and have stayed that way for almost a year.) I have inflammatory tendinitis in my shoulders, hips, wrists, and ankles. I am battling costochondritis, the inflammation of the cartilage in my rib cage. I also have Sjogren's, which means my eyes are constantly dry and red and my mouth is so dry that my lips stick to my teeth.

So, now you know what I'm facing. I lived for 50 years with relatively few major health issues, then, WHAMMO! This thing hit me like a freight train. I had a life I liked, making things and teaching others to make things. Travelling and gardening and eating good food. Good friends, wonderful family. A good life. A life I do not want to give up. As I said in my last post, I am weaving the ends of that life into a new cloth, building a different life on the foundations of that old one.

The first step, in every journey, is acceptance.

For more information about RA, you can go to:

Thursday, September 25, 2014

New Stories

It's been a while again.

I know I haven't been the most consistent or prolific blogger, but, even for me, four months is a long time. It's not that I haven't had plenty of adventures, or that I don't have long, rambling stories to tell. In fact, I've had a wonderful summer, filled with travel and gardening and family and friends. I even sat down to write several times, but I stopped.


You see, when I started this blog, I wanted to write about my journey as a fibre artist. To show off finished objects. To share my travels and adventures at fibre events. To teach and inform. This was, to me, a place for fibre and art and ideas. I know I strayed a bit here and there, but my focus always returned to my true love, the fibre stories.

Over the past year, my stories started to change. They were no longer stories of fibre and spinning and making things. As I tried to write this past year, so many of the stories changed into stories of pain, of frustration, or of anger. There was no longer spinning to share, or finished objects to show.

So, I stopped telling stories. I stopped sending out proposals to magazines, I stopped working on the book, I neglected this blog. I had no story to tell. Not anymore.

But this past month I have realized that I do have stories. Just not the ones I am used to telling. New stories. Scary stories. Stories of despair and hope and redemption. Stories of recovery and reclamation. Stories of set-backs and defeats. Stories far more interesting and revealing than those simple stories about making yarn and knitting sweaters.

I had put my stories in a box. They were safe stories. Stories about things outside of me. It's time now to set my stories free. There will be stories of spinning and pain and knitting and adaptation and growth and learning.

I am slowly weaving the threads of my old life through those of my new one. This is no longer just a blog about my journey as a fibre artist. This is a blog about my journey as a fibre artist with Rheumatoid Arthritis.

This is a blog about me, as I learn to bring my two worlds together. That old world of fibre and teaching and travel and my new world of disease and doctors. Each world has its stories, and I am the place where those stories intersect.