Year 3. 2007I file for disability. I'm turned down. I file again. I can't quite figure out how to do life since my body has turned against me. More pain. I feel weak. I annoy my family by whining and feeling sorry for myself. Grocery shopping seems impossible, putting any sort of meal on the table insurmountable. I try countless supplements. I research more and more. Maybe I can find some secret answer being hidden from me.
Year 4. 2008.Turned down for disability again. I feel gutted. I know I don't look different—no casts, no missing limbs--but I feel so very different from the person I was a few years ago. My only recourse is to get a lawyer to represent me, someone who knows the system, someone who can take my side in this. If I can't manage two different appointments or events outside the home in a week, how will I ever work again?
My doctor sends me to a 5 week class for Chronic PainManagement. I attend 4 days per week, some days so exhausted by the end of the class that I have to buy coffee to hopefully stay awake for the drive home. We are an odd mix: woman with migraines, men with back surgeries, another woman with Fibromyalgia, another with a neck injury, etc. etc. We are taught to meditate, to do relaxation exercises, to do gentle stretching, to speak only of positive things. We are told not to get involved in each other's lives, yet we do. The few of us with a sense of humor sustain each other in secret moments. We are corrected like small stupid children as they teach these things. This gets in the way of learning. Yet, I learn things.My husband's dog gets very very sick in the midst of this and dies. We are both devastated. I consider giving up on the class (I only have 1 week left) but those in charge let me take a week off and return to finish.
My pain management doctor tries to kill me with many different heavy opiates. My husband says, "For somebody as stoned as you are, you should be having more fun." I decide to get myself clear of the final one, Fentanyl. The withdrawals are pretty much Satan incarnate.
Year 5. 2009.
The lawyer wins my case. All I have to do is feel humiliated in front of a judge and several others as I listen to them try to invalidate my experience. But I now have disability benefits, a small amount, since I worked part time when I last worked. But it's something, maybe I can use this for my Get-Well money. And clothes, I will surely need some new clothes to get well. And the occasional pedicure.
I am in a full flare of Fibromyalgia total body pain, fatigue, and confused head, when someone decides to fill me in on the “fact” that “if you only ate this way you would be fine.” She also tells me that “at least” I don’t have cancer or diabetes. I look at her and say, “The good thing about Fibromyalgia? You don’t die from it.” She smiles a great big cheerleader’s smile. I continue.” The bad thing about Fibromyalgia? You don’t die from it.” Her face folds in on itself. She quits talking. Finally.
Don't change that dial--i'll be back....