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 

Ahhh...The Family Dinner

Last night was my grandmother's 96th birthday dinner. The belle of the ball twinkled with delight as she sat surrounded by her children, grandchildren, sisters and cousins. Tales of life growing up back on the farm filled the room with laughter and good memories. Of course a few embarrassing stories popped up, as they usually do, but she was a good sport through it all. I had a nice time. However, the same redundant challenges of taking care of myself while interacting with the healthy world at large reared it's ugly head, as it always does. See I can engage in these activity-filled frenzied occasions at this point in my life. For a while it was merely a pipe dream. The sensory overload and activity alone did me in and devastated my world for days, if not weeks. Then of course there are manners. I was raised to pitch in and help out, like every other female in my family, and when I can't I feel simply awful about it. For a long time I avoided these gatherings because I couldn't pull my equal weight. Now I try and help out a little and not feel bad about hanging out with the guys while the women work. And I certainly have a time limit. I've found it's about two hours.

Right on time I feel it start to happen. The dancing pain spreading across my upper back, fog quickly claiming my brain and that unique feeling of fatigue like magnets are sucking me to earth and I cannot move. It's time to go. I start to gather myself in that direction but get sidetracked by birthday cake and a conversation with a cousin I hadn't seen in a long time. So by the time I really start to go an hour later I am well on my way to falling apart. Then bedlam strikes. The table is dispersed sending everyone up and milling around the room talking loudly. Then another family arrives, but they have a dog who isn't dog friendly so stick her in the backyard. Well Yorkie & Porkie go nuts when they see a strange dog outside, compounding the sensory explosion with fervent barking. And more people come, and it's REALLY loud. And I am trying to say goodbye to everyone swarming around each other like bees in a beehive. And then of course I just lost it. 

Now I only have myself to be mad at here. The people who begged me to stay for one more picture, a piece of cake, to finish discussing a topic, they aren't doing anything other than being pushy and not putting my needs first. But it's not their job to put my needs first, it's mine. So as I rant and rave and cry and wail on the way home I realize how furious I am. At me. Why didn't I get up and walk out when I knew I needed to? Why do I think anyone else in the world can possibly grasp that I look just fine, and make quite an effort to act just fine, but am ALWAYS sick. Every single day of my life. Some days are better, some are worse. Some are happy, some are sad. Some are filled with remarkable joy, and others outlandish devastation. It really doesn't matter, I am sick for every single one of them. Even on my good days, when I really feel Fibro releasing me from it's ugly clutches, I still fall painfully shy of what a normal healthy person can do. I can't bang my head against the wall of getting people to understand, though. Because short of hobbling around in dirty rags with a tear stained face and bandages wrapped around my extremities like a mummy, nobody is going to remember I am any different than they are. This is not an easy road to walk. But I have found the times I am cognizant of my limits and respect myself enough to actually get up and leave when I know I need to, well, it works. I am able to straddle both worlds. But only if I am very responsible to the person I am terrible at being responsible toward. Me.

Thanks for joining,

Leah  

I Want To Know!

Lately I've been feeling, dare I say it, improved. Now don't get me wrong, it's not like Fibro is gone or anything, but my good days are better than before and bad days aren't as frequent. This step-up in my quality of life has stimulated a whole new cyclone of thoughts whirling around my head. I wonder how I survived the last eight years. I seek to understand where I found the strength to haul myself through and out the other side. I pray I keep going in this direction. But perhaps the most important question of all is what on earth did I do that actually worked? I know I changed my entire life, worked very hard and refused to give up. Is it as simple as that? Or are there other factors at play here? 

Fibromyalgia is as individual to each patient as the person is themselves. While there are many shared symptoms the severity ranges from bothersome to completely incapacitating. Why? How come some patients suffer from inflammation yet others do not? And why on earth do some get better while others can't leave the house? Science and medicine cannot answer these questions yet. Many frustrated doctors leave patients to figure it out for themselves, which hardly seems fair. I wasn't content to let the concept of fairness supersede my quality of life and attacked this beast like a rabid dog. It worked for me, but that's just me. I think it might do the patient body some good to explore what we do know instead of focusing on what we don't. Fibromyalgia is a syndrome. This means they know the symptoms it causes, but not why it happens. Could it be there are as many different causes as there are stars in the sky? Is it simply the mechanism allowing permanent damage to the central nervous system we share? I have to say after talking with thousands of patients I think so. And not just because I want to prove the person who just told me I got Fibro from eating wheat wrong. Even if that is a mighty big motivator.

My root cause is viral. I've seen enough specialists, received enough treatment and lived with it long enough to recognize this truth. My flares consist of a specific set of symptoms not present when not flaring. All my autoimmune tests come back negative even though my immune system can't seem to get a handle on it. But that's just me. When I first started blogging and networking with fellow patients I thought I knew all the answers. I'd managed to reclaim my life from the hell of unmanaged Fibro and believed strongly in what I'd done. And that it would work for everyone else if they just put forth the effort. Ahhh, the blissfully ignorant position of sitting in right. It didn't take me long to realize I sounded like a sanctimonious ass. For unless a person lived my life, shared my root cause, received the same treatments I did and changed their lifestyle in the exact same way, I couldn't insist what worked for me would work for them. There is simply no way to know this, yet. Is it possible we the patients could advance our cause drastically by getting on the same page, and that is that we don't share a single root cause and therefore experience this illness differently? Once again I have to say I think so.

Thanks for joining,
Leah

The Stigma Of Fibromyalgia

Last week I went to the post office and had yet another enlightening conversation with the clerk helping me. It's a conversation I've had many times with many different people during a variety of activities. In fact, it doesn't seem to differ much at all regardless of who I am talking to. She took one look at my The Fibromyalgia Crusade return address labels and repeated the name slowly. "I'm tired all the time, how do I know if I have Fibromyalgia?" she asked. The way the question was phrased indicated this person had some prior knowledge of at least one facet of Fibro symptoms. I paused for a second to figure out how to best answer this question. "Well," I answered honestly, "when it gets so bad you'd rather die than continue living it's time to go to the doctor." Was that dramatic enough? She gave me a rather perplexed look. "It's extremely painful too. A central nervous system disorder that increases painful sensations in the muscles and ligaments," I added. "So it hurts like when you work out too much?" she asked with an utterly obnoxious smirk. Ahhhh, I thought to myself. Someone in her life has Fibro and she doesn't like it one bit! Doesn't understand it, doesn't believe it...

"Oh no," I answered, unwilling to be painted into a corner on this one. "It's like the flu. A really bad flu. Forever. For years. It never goes away." That reached her. She got a look on her face which was a wonderful combination of shocked horror and blatant discomfort. Our conversation about Fibromyalgia ended there and I quickly paid and left. Well the second we stepped outside the friend I was running errands with got a wigged out look on her face. "You sure handled that a lot better than I would have!" she yelled. "I wanted to reach over and smack her across the face!" I laughed and thanked God for the supportive people in my life. So I explained my diplomatic approach, how getting people to understand and relate it to their lives is far more important than being right or caring how strangers perceive me. And as we talked through this twelve second conversation and the many layers of meaning it held I realized something overwhelmingly profound had happened.

I didn't get upset! I was confronted with a doubter and didn't experience one blip of spiked blood pressure. There was no taking this person's disbelief personally or feeling ashamed I have something so many people don't understand or give credence to. There was me, explaining it, putting real world comparisons to my pain and symptoms. And then ultimately walking away and not giving one rat's woo-ha if she changes her opinion about Fibromyalgia or not. I'd done my part and hopefully made her think about it in a different way. That's all I can do. Encounters like this used to leave me outraged, frustrated, bitter and completely bent out of shape. And wondering why I had no ability to tend to my own life. I've been working very hard on releasing the need for approval and acceptance from people who aren't relevant to my existence. I guess it's working...at least for a twelve second conversation that took place one day last week it is.

Thanks for joining,

Leah