It's All In My Head

I just wasted a lot of time over on Wordpress trying to set up a new blog. I wanted a space of my own to write about fibromyalgia called "It's All in My Head". After trying to get the name I wanted, and didn't, after trying to decide on a layout and a picture and and and...stressing about it I'm back here. And why not? This is where our people are. This is where Mike and I took our journey through cancer. This is where YOU supported us and YOU are part of WE. We did it together and that's how we got through cancer. We invited you into our lives and you came. You stayed through thick and thin. What I have is fibromyalgia. That means WE have fibromyalgia and this is where I belong to talk about it.

Almost everyone I've talked to has someone in their life who has this condition. I've had it since Halloween  of 1999. Trick or Treat baby! Back then a significant riding accident injured almost my entire spine and turned on my pain. Over the years other physical and emotional injuries as well as surgeries and stress have aligned to ramp my central nervous system into high alert and fibromyalgia.

As with most "fibro" patients it took a long time to get a diagnosis. My primary doc knew there was something wrong she just didn't know what. After many visits with different providers a local doc was able to say it was fibromyalgia. That was in 2004.  It was a huge relief to finally have a name and acknowledgement for my pain. Still, I know that I didn't totally buy into the diagnosis until this past week at Mayo Clinic's Fibromyalgia program. Why? That's a good question. I'm not really sure? Perhaps it was still the underlying or maybe I should say undermining collective conscious belief that fibromyalgia is a garbage can diagnois for "we don't know what is wrong with you." Maybe it was because before January I only had a couple of flares a year and the pain was so minimal in between that I disregarded it. I used to say it was no big deal. I had fibro but only a couple of times a year before that. Or it could be and probably was that I just didn't want to accept it as the chronic condition it was.

In January of this year I began to exercise to get into shape for what was shaping up to be an active summer. In my third week of exercise a flare, which has lasted for 10 months, was triggered. Along with the chronic pain came a host of other symptoms: fatigue, difficulty with sleep, moodiness, anxiety, headaches, stiffness, tingling in my face, legs and hands, heightened sensitivity to noises, bright lights, touch and odors, dizziness and my favorite and most amusing symptom - the loss of my brain or fibro fog. Concentration was difficult. I'd see words I wanted to say skate on by and not be able to retrieve them. I'd forget what I was saying in mid sentence. I couldn't organize a thought if I only had one.

I understood the pain was fibro and went to my primary doc for help. I just wanted something for the pain. Something to knock it down for a few days so I could regroup and then go on. No pain meds were forthcoming. We tried several meds for the fibro - gabapentin, neurontin and finally the newest fibro approved drug Lyrica. The flare continued and in a desperate move I asked to be referred to Mayo.

So, there was a lot of info from the Mayo trip. I came home with hope and a sense of possibility. I'm ready to walk this walk and share my fibromyalgia with you. (oh stop! it's not contagious and you know what I mean) What I'm saying is this will be a lot like the cancer part of this blog - good, bad and ugly because this is part of my/our life and to isolate it off onto another blog is to isolate myself. I can't do that because I need the support I've found here at Whiskey Jack Flats. Don't worry though, the blog won't all be about the fibro! Who wants to hear about that all the time.  Mike has access to this blog and lately I've been doing a little channeling of my hero Erma Bombeck which I hope will show up here. We have a life to live for crying out loud.

As for "It's All In My Head", well mostly it is and you can just think on that one for a while. It will become clear later!

Peace Boyz and Gurlz!,
Karen