Tuesday, September 22, 2009

My Journey - Part I

Fibromyalgia is one of those dreaded “incurables”, the one’s the doctors will tell you they cannot get rid of but will happily manage your symptoms for the rest of your life with pills… to make you more comfortable.

Unfortunately, I have never met anyone who was truly made “more comfortable” with this method of treatment. Nor have I met anyone who could stop with one drug. Most drugs, in short order, will require further drugs to help with the symptoms brought on, or “made noticeable” by the first drug.

Drugs are changed out regularly for new pharmaceuticals that are always reported to be “doing wonders!” There were the Guafenison years, the Amitryptaline years… there is always something that is “so promising!” Until it manifests it’s own problems and is quickly forgotten by all except those doctors who have little experience with FM. They are promoted, then discredited, then years later become the rage again. Not because they truly do anything, but because the thought of enduring a life of pain and disability with no big promising hope on the horizon is too huge a burden to carry.

Many of us suffer a growing list of symptoms for years, questions unanswered, having no idea what is wrong with us. When we “finally receive an answer” we are happy know. This is something that we can work with… if we know what we’re dealing with.

The trouble is, the doctors *don’t know what they’re dealing with. Fibromyalgia, Chronic Fatigue, these are names given to a recognizable set of otherwise inexplicable symptoms… a label for a grab-bag of misery now afflicting an estimated 10,000,000 Americans and growing.

16 years ago, when I was first diagnosed with FM, it was not something that anyone had heard of. I struggled with it silently, unable to explain or convince anyone of it’s real existence… of the reality of the pain and exhaustion in such a young body. Now, there are promising advertisements, billboards, talk-shows, books and drugs especially created for what seems to be a growing epidemic.

But why? Where did it come from? Why is it growing and why are there no answers in the medical field?

In the summer of 2007, with a new baby girl and young son to care for, I finally reached the point where I was unable to walk unassisted, care for myself, or really bare the waking moments at all. After 16 years of trying everything my doctors suggested I feared that I might start screaming and not be able to stop.

I saw my doctor a last time. Unable to take any further prescriptions with a new nursing baby, he told me point blank, “I don’t have anything further to offer you.” Maybe you should try acupuncture.

That was it. I went home and cried. I cried for the pain, for my kids, for the utter inability to imagine a future.

I cried until there were no more tears and no more beliefs. I cried until there were no more fears and no more hopes. I cried until there was nothing but silence left inside of me.

Then I sat. Quietly. Each day my husband carried me from the bed to the large arm chair in the picture window and I watched the world with silence inside of me. That summer it rained every day. Poured, hour after hour, and the streets flooded like rivers. It rained for months and it seemed to be for me. It rained and I began to live again.

My first step was acupuncture. It was the only thing that I understood in the mysterious Eastern medicine front. I was already eating an entirely organic diet, so I believed, food could not be the cause here.

I nearly cried again when I had spoken to several acupuncturists and found that sessions were around $75 each, and though I could go as often as I could afford, if I wanted healing at a noticeable rate I needed to go at least twice a week.

HOW we could afford $150 a week in addition to the food costs was a question that I didn’t even want to grapple with, but my husband put it to me this way: If someone said to you, “give up your life as you know it and you’ll be rewarded with a new body.”

Would you?

I didn’t really know. I couldn’t really conceive of what a life with a healthy body would be like. Giving up the life I had built around it seemed terrifying. Yet, spending the rest of it, unchanged seemed an impossibility.

I realized then that if I could have a chance at a real life… a life of physical freedom, a life where I could do anything for my kids, where I woke up refreshed and able to do what I liked, a life where anything was possible to me the way it seemed to be to everyone else… I was willing to do anything. I realized that I would rather dump every cent that we had into healing and live in a box on the corner than to continue life this way.

Then I realized something else. I realized that I believed in the possibility of being healed… of being cured…. of not having to endure a life of “treating” and “managing”. Some part of me knew that I was not damaged beyond repair, some part of me knew that everything could be different. I believed that that part of me was right and I gave her full reign. Our lives became about healing. We were driven by nothing but a belief in a better life, for us all.

And so the research began. I chased down every single lead and suggestion. I believed in each of them equally and embraced them fully. I tried everything from acupuncture and herbs to faith healing, and I waited to see what happened. Each lead opened up to more until I could see a whole world of options. As I tested and tasted I began to get a better understanding that some things were simply better suited to me than others. Though chinese herbs may be the key to some, energy work may be the key for others.

The more I tried, the more I learned. The more I learned the more I began to see a larger picture, a deeper truth. As I began to hit what felt like dead ends with therapies that were working in leaps and bounds, I began to understand that there seemed to be more than one body to heal. This was something that I could work with. Shortly after I had a dream that I would be healed within the year. I saw and felt my new life and it seemed so real. Had I known in that moment the reality of that dream, I think I may have burst.

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