The Dance Card Of My Choosing

Last year a series of unfortunate events rocked my world. Normal stuff everyone deals with like hosting a birthday party, surviving the holidays, falling on my face while running my dogs. But something was different. Did I hit my emotional bottom? Maybe the utter lunacy this illness forces one to live with day in and day out pushed me over my tipping point? Perhaps I healed enough from the strokes my true personality started to rear it's impatient head and didn't like what it saw? I can't say it was one thing. More like a paradigm shift of epic proportions enveloped me. I'd had enough. Stop the bus, I need to get off. I couldn't take one more round of the Fibro cycle. That push-crash-push-crash-push-crash nightmare of unmet expectation and constant disappointment. Waking up every morning either flaring or angry, because I knew by the end of the day the other would have taken over.

That funny thing called clarity smacked me upside the head and I knew I couldn't do one more tango on that dance floor. For the first time in my life I took responsibility for even standing in the ballroom in the first place. Yeah maybe others told me to foxtrot, encouraged me to two-step, got mad if I didn't cha-cha with their equal fervor. But ultimately at the end of the day none of that mattered. What was important? How I neglected me, my heart and soul, as penance for getting sick. Repetitively assaulting myself by believing I wasn't worth more than being...a disappointment. 

So I set out to change. I couldn't wave a wand and make my illnesses disappear, but with lifestyle management I sure could minimize their impact on my quality of life. It's hard to change direction when you think you're stuck on a train track barreling full speed ahead. Like everything else in my life since I got sick my efforts were slow, hard, painful and arduous. The only way I saw the possibility of living a successful life was to stop caring about what everyone else thought/expected/wanted. The few principle relationships in my life became my focus and the rest ceased to be more important to me than me. I don't like being unpopular and my new practice wasn't well received, for a bit. Oddly enough they got over it pretty quick. Which was good, but funny, because the whole point was I wasn't supposed to care anymore. 

Day by day I made choices by considering the outcome first. If it sabotaged me, I didn't do it. I felt terribly selfish initially, fueled by progress's biggest aggressor, guilt. It is now, half a year later, so obvious what I needed to do. How I didn't see it sooner mystifies me. Comparing my output and lifestyle with healthy people, or even expecting them to understand my reality, seems completely ridiculous now. And I've discovered that havoc-inducing guilt is but a silly indulgence. See the point wasn't to hole myself up in a cocoon where I could strike out at the attacks of life like a self-absorbed twit. The purpose of all this was to retreat, improve, and come back out again. Able to engage in this thing called life in ways that don't make me sick. And it really does feel that simple. 

Thanks for joining,

Leah 

It's All Just Somatic Symptom Disorder

My husband and I were watching Downton Abbey when the subject of cancer came up. This inspired a lively discussion about the origins of cancer awareness in society. I said they knew what it was by the mid-1800's. He didn't think the disease was identified or term used before the 1930's. So of course my friend Google swept in to settle the debate. Needless to say I was right, or more right than he was, which is really all that matters. So as I am reading through information on the evolution of cancer knowledge throughout history something made my jaw drop. "Cancer was thought to be caused by trauma until the 1920's."

Wha-wha-wha-WHAT? After I stopped flapping my wings long enough to settle down I realized how wonderful this tidbit of information actually was. Maybe there is hope for us yet, Fibro friends! Less than a hundred years ago evil, rapidly-replicating cells gobbling up the good ones were thought to be trauma-induced. Today they don't know the causes of all cancers, per se, but society generally recognizes it's not a mentally inflicted illness. I felt wonderful justification all my ranting and raving about science not understanding Fibromyalgia YET held truth. 

But a scary line is about to be crossed. The American Psychiatric Association is slated to publish a revised edition of their Diagnostic and Statistical Manual of Mental Disorders (DSM-5) this month. This impending revision has much opposition and created quite a scandal across many disciplines in medicine and the community. Why? Three words: Somatic Symptom Disorder. What gives you this diagnosis? Report one physical symptom you find distressing or disruptive to daily life for at least six months, along with one of the following:

A) Disproportionate, persistent thoughts about the seriousness of symptoms.

B) Persistently high level of anxiety about health or symptoms.

C) Devote excessive time and energy to symptoms or health concerns.

Yea, like I said, scary. Basically if science, in it's limited fallible wisdom, can't tell you what's wrong with you, and you do something as outlandish as obsessively care you are sick, it's a mental disorder. Do I really need to highlight all the problems this will cause? The National Institute of Mental Health even voiced opposition, for about a week. However, in typical big-government fashion they've redacted their concern and now proclaim it's a "complimentary" diagnosis, not "competing." But please don't panic! These diagnostic criteria don't go into effect until late 2014, and we have a great many knowledgeable and important voices shouting from our corner.  

"Mind you, studies by the American Psychiatric Association have already shown that 15% of folks with either cancer or heart disease would be diagnosed with this disorder, and 26% of those with irritable bowel syndrome or fibromyalgia. What’s more, 7% of people who have no active medical diagnosis also could qualify." *Dr. Keith Ablow, Fox News

"Many years ago, the late Thomas Szasz said: 'In the days of the Malleus, if the physician could find no evidence of natural illness, he was expected to find evidence of witchcraft: today, if he cannot diagnose organic illness, he is expected to diagnose mental illness.' DSM 5's loosely defined Somatic Symptom Disorder is Szasz worst fear come true." *Suzie Chapman, Health Advocate

 "The publication of DSM-5 is a sad moment for psychiatry and a risky one for patients. My recommendation for clinicians is simple. Don't use DSM-5 -- there is nothing official about it, nothing especially helpful in it, and all the codes you need for reimbursement are already available for free on the Internet or in DSM-IV." *Dr. Allen Francis, Chair of the DSM-4 Task Force 

And here we sit. Some days I think we are getting closer to legitimacy. Today is not one of those days. The ruling forces of our world will continue to squash the masses into easily controlled categories. It's what they do. It is up to us, more than ever, to be responsible for ourselves. Educate yourself and try new things to help make life more bearable. Exist in your truth and seek out doctors who won't shove a neurological illness into a psychiatric category. Pay attention to the research and developments pertaining to Fibromyalgia, and be aware of the challenges constantly hurled our direction. I believe, with every beat of my heart, one day my great-great grand-niece will scan the microchip of information implanted in her brain and flap her wings at the thought of Fibromyalgia being a psychiatric disorder. It's up to us to make that happen.

Thanks for joining,

Leah 

One More Layer Of Acceptance

I've been extremely irritated to discover lately I've been extremely irritated. Over everything. Not overwhelmingly or anything, I certainly haven't been ending each day puddled into a sobbing heap like I used to. Thank God. But a few weeks ago I was feeling much more positive about life in general. This week I am plagued with disillusionment and self-doubt. Some soul searching led me to discover a fair amount of these feelings relate to being sick with this quasi-disease sickness some people accept, others laugh at, and nobody can agree on. No foolin'.

Mother's Day is Fibromyalgia Awareness Day. The irony seems bitter to me, considering I don't know exactly what illnesses or disability or near death experience I was supposed to squeeze starting my family between. However I am grateful for the opportunity to celebrate with my own mother, least I forget my blessings and drown in self-pity. I've devoted a significant amount of the last two years to writing a fictional novel that will bring big-time awareness to Fibromyalgia. It's an insurmountable task which has brought me much joy, even if some days I wonder if I am wasting my time. But lately I've been wondering if I am out of my mind. And then there is the nagging question I will never have answered but can't seem to stop asking. If the multitude of medical professionals I sought out in the early phase of this illness would have taken me seriously, and not sent me out the door with a patronizing anti-depressant prescription and pat on the head, would I be disabled today? 

And around my head they whirl. My issues. My goals. My sorrows. My anger. Seriously, dude? Am I going to  go through intermittent phases of this crap forever? It was through talking with my friends who have Fibro I made my peace. Yes, I will. Because the human animal is an animal. The will to survive has created an instinct to persevere at all cost. And living with chronic illness is not a natural state. No matter how much I mentally coach myself to focus on what I have and not what I don't, it would actually be unnatural to never experience periods of restlessness or outrage. I am imprisoned and this is outrageous! Ahhh, I feel much better now. It's amazing what finding an outlet can do for those pent up feelings. So in the spirit of moving past my melancholy I made a date with my mom for Sunday. Just a friendly warning, if you see two crazy ladies in The Fibromyalgia Crusade t-shirts downing a carafe of wine and laughing ourselves silly as we trip through memory lane, well, you found us.

Thanks for joining,

Leah