CHRONICLES OF FIBROMYALGIA

It's All Just Somatic Symptom Disorder

2013-05-16T15:38:00.000-07:00

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

2013-05-10T16:21:00.000-07:00

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

2013-04-28T15:38:00.000-07:00

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!

2013-04-24T15:29:00.000-07:00

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

2013-04-15T17:40:00.000-07:00

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

Opening Up To The World

2013-04-03T19:47:00.000-07:00

Late last year my husband and I were watching Saturday Night Live and a skit came on about the Fiscal Cliff. Well...I didn't know what that was, hadn't ever heard the term. Part of my way to deal with my myriad health issues has been to eliminate sources of stress not critical to my survival. The news can sure be a source of stress! Nevertheless the look he gave me was similar to the one I give when a person under 25 asks me who The Beatles are. Dumbfounded disbelief. I felt ignorant and out of it and not at all connected to my fellow man. So the following day I turned the news on, determined to become aware of a world outside my own. A few days later the tragedy at Sandy Hook Elementary School happened. Then it seemed there was another random public shooting every other day. It got to the point where I was scared to turn on the TV in the morning for fear of what had been unleashed while I slept. I remembered through rivers of tears pouring down my face why I didn't want to be a part of this cold, terrible, heartbreaking world. There was just too much pain. Senseless, pointless pain.

I stuck with it, though. And eventually there came a day when a person didn't converge on a public place of innocents with open fire. Amazingly enough there came a day I could watch the news without breaking down in a puddle of tears, too. Slowly I became reacquainted with the comings and goings of the world at large. Before I got sick I used to rant and rave at any newscaster who didn't share my opinion. Perhaps hardship has grown my compassion because I found myself listening to opposing viewpoints thoughtfully, and even learning a thing or two. As my knowledge of the world we live in expanded my sensitivity toughened up a bit. I mean if ever there was an exercise in not freaking out over things I can't control, watching the news was it!

So what did all this exposure to epic amounts of violence and controversy do for me? Slapped me around a little, reminded me of what is so terrible in the world, illuminated the irrelevance of my own existence? Sure. But it also propelled me forward. Being connected to something bigger than myself helped me think about more than myself. Examine my spot on the planet, how I fit in and what I can do to make the most of my life, regardless of hardship or disability. As odd as it may sound taking up with the daily news stuck my toe in. Signing up for the writing workshop a month later dunked me up to my jodhpurs. And finding out a piece I wrote in that workshop won in a writing competition a few weeks back, well I am now submerged up to my head. One small step toward joining the outside world turned into one giant leap forward in the progress of my life.

Thanks for joining,

Leah

I Think I Can, I Think I Can

2013-03-27T12:29:00.000-07:00

The other day I walked into my kitchen full of dirty dishes and saw a roach. To say the elephant is afraid of the mouse here is a drastic understatement. In quick action I grabbed my fly swatter and tried to convince myself I had the guts to whack it, but it was hiding. I quaked inside. I looked at the clock to see how long before my husband would be home from work. Hours. I jumped up and down and squealed like a little girl and felt a million roaches scattering across my body. Then I got a grip and dug out the Raid under the sink the roach was hanging out in, certain it crawled into my hair while I was doing so. So there I waited, quaking inside with a fly swatter in one hand and can of Raid in the other. Who says urban living ain't grand!

Needless to say the elephant won this round. So I set out to clean up the massive mess of overturned dishes soaked in Raid strewn about the counter. Sadly I lamented the days of leaving my dishes for later had finally come to a close. I washed and Lysol'd and swept and even cleaned the burner pans on the stove. No crumb was getting by me, least I see another creepy crawly and know there was something I could have done to prevent it! Then I moved on do do something else, but kept seeing insects scurrying around my house out of the corner of my eye. I became convinced they were emerging from every drain and between every wall crevice. Soon they were going to overtake my living space! So I had to do it again. I told myself, quite loudly in fact, that there were no insects in my house. There never were going to be insects in my house. I didn't see them and they weren't there. In fact they didn't factor into my life at all and were completely irrelevant to my existence. Flipping my brain to positive thinking was hard but I kept repeating it and sure enough eventually stopped tripping out like an adolescent waiting for the phone to ring.

With startling clarity I remembered another time when my thoughts had to precipitate something actually happening. In fact I don't think it would have happened any other way. When I was living in San Francisco I could barely make it down three flights of stairs to take my dog out. I was disabled and broken and confused and scared and angry. Nobody knew how to help me and my life was quickly slipping away. The harder I tried to overcome it the sicker I got. Everyone had suggestions and plenty of criticism, but absolutely nothing of value to contribute to my situation. They just didn't understand, hell I didn't understand! But the line in the sand was before me. I either had to lie down and fade away or come up for air swinging. So I picked up a mantra and with more hurt and pain than I knew one person could even feel, repeated it over and over again every hour of every day for weeks and months until I was ready to figure out how to make it come true. I will get better. Today I may not be who I was before I got sick. But the woman who could hardly make it back up those three flights of stairs and had to stop on every landing to gather her strength, she just ran a mile this morning. Well most of one.

Thanks for joining,

Leah

The Fibromyalgia Blood Test

2013-03-20T19:16:00.001-07:00

It hit the business wire a few weeks back a blood test which detects Fibromyalgia has been developed, registered with the FDA and is currently being sold. Holy shazam a-lam-a-ding-dong...WHAT! With rapt attention I poured over the clinical abstract and scientific research to get a grasp on what on earth had been unearthed. As it stands Fibromyalgia is a diagnosis of exclusion based on a collection of symptoms reported by the patient. There is no conclusive test to either confirm diagnosis or rule it out. Fibromyalgia symptoms vary drastically from patient to patient, people respond individually to different treatment methods and modern medicine is still searching for the cause and mechanism of all this mayhem. Well The University of Illinois College of Medicine at Chicago, in conjunction with a biomedical company EpicGenetics, says they have figured it out. "In the past, FM was claimed to be a rheumatic, neurologic or psychiatric disease despite the fact that there were no objective links to any of those pathways. Our findings uncovered evidence that FM is instead an immunologic disorder." BMC Clinical Pathology.

So what exactly is Fibromyalgia, according to this groundbreaking discovery? I desperately want to know what the hell caused my entire world to implode so I did a significant amount of research to figure out what this study revealed. In the simplest terms, protein molecules produced by white blood cells (cytokines) in Fibromyalgia patients suffer from a dysregulation disorder. They are supposed to send messages via an inflammation response to alert the body when something is wrong so the body can fix itself. Just one component of the immune system at work. But in Fibromyalgia patients these protein molecules are depressed. This immune development disruption makes Fibromyalgia patients more vulnerable to stress. And the perfect storm is set into motion...

Now let me clarify the word stress here. This isn't stress as in, "Oh my God I am so stressed out!" It is stress like when a doctor tells a patient to come in for a "stress test." They are strapped with electrodes, hooked up to machines and made to run a marathon on a treadmill to measure the effect of stress on their body. Okay maybe not a marathon but you get my drift. A fundamental building block of physics discovered in 1660 called Hooke's Law explains stress as the distribution of external force on a material, resulting in strain. It wasn't until the 1920's stress became associated with psychological or biological mental strain. So let's dispel the confusion of the chicken or the egg. A person with Fibromyalgia has immune patterns already present that cause stress to wreak havoc on their nervous system. Yes, the "Oh my God I am so stressed out!" kind is a valid contributor, but so are a million other sources of external force on cells and molecules and peptides and lymphokines and whatever else exists inside a human body to make it a human body. Like I said, a perfect storm.

Clearly I am more impressed by the actual mechanism discovered unique to Fibromyalgia patients than any test which can tell me if I do or don't have it. Scanning the posts of my fellow bloggers tells me I am not alone in this skepticism. See cytokines have been a working theory of research for decades and are known offenders in a slew of other ailments. What this study gives us is the first way to actually measure a difference between Fibromyalgia patients and healthy or healthy/depressed controls. It's a big win, the first breadcrumb of a clue conclusively showing a scientific difference in Fibro patients. But like many things in life, conclusive proof opens up far more questions than provides answers. Is this immune dysregulation true for all people diagnosed with Fibromyalgia? All 12.3 million of us in the USA alone? How well does it differentiate between Fibromyalgia and RA, Lupus or a gazillion other immune disorders and chronic pain conditions? Is there enough information available to wrap it up with a bow and stock it on blood pathologists shelves? Perhaps time, and significantly more research on a greater population of patients, will tell.

Thanks for joining,

Leah

Resources:

-National Institute of Health

-BMC Clinical Pathology

-FM/a Test

-Yahoo Finance Press Release

*Blog author has not been contacted or compensated by any of the linked resources and makes a claim neither for or against the FM/a Test.

Say What?

2013-03-15T18:20:00.000-07:00

The other night I was watching my favorite freak show Oddities with one eye and doing five different things with the other. Then I heard something that made me pay attention. Seems there was an actual scientific study done on the effect of swearing loudly and sensory pain perception. It made me giggle, but I wanted to know more so looked into it. Seems to be yes, swearing does indeed increase a person's pain threshold, according to a study done at Keele University School of Psychology*. What's even funnier is they discovered this information while attempting to prove the opposite. That swearing contributes to the intensity of pain and emotional distress.

Now this is not new news, in fact this information is a few years old. I found myself a bit irritated I was just learning I could control my pain with the F word. That knowledge would have been very valuable over the last few years. But I know it now so I set out to understand why. Scientific controls and hypothesis and double-blind aside I used nothing more than intuition and common sense. Could it be related to endorphins? The rush a person feels when doing something they shouldn't? An evolutionary gift from our forefathers allowing us to feel good for a moment, but not too long, lest we get lazy and eaten by a saber tooth tiger?

Then I remembered the day fondly when taking calculated risks wasn't that big of a deal. If I drank too much the night before I could sleep it off with Advil the next day. If I ate three pieces of birthday cake my stomach ache would dilute in a liter of water within a few hours. For goodness sake I was a smoker in my youth! But simple negligence in the past is a massive disruption to any sort of order in my present. I already have so many freakin' problems there is no way in hell I could handle any I actually choose to inflict on myself. Ahhh, the joy of aging, the joy of illness. But I do have to say this experience did leave me better off. I decided to test my own hypothesis. So I went out and had a few beers, and as I screamed expletives over the noisy bar I had more fun than I'd had in a while. And I remembered the joy of not always being prudent. And really didn't feel much pain at all.

Thanks for joining,

Leah

*Keele University School of Psychology

Open Wide

2013-02-28T18:28:00.000-07:00

After I got that horrible flu that was going around I was left with a lingering cough and the distinct feeling I'd been punched on the right side of my jaw. The cough slowly lessened but jaw pain only got worse over time. I spent a few weeks in blissful denial hoping it would just go away until my ability to chew became noticeably compromised. Sigh. So I called my dentist and made an appointment. I'd experienced this joy before and hoped and prayed I didn't need another root canal and crown, which are quite painful and outrageously expensive even with insurance. But of course that's what it was. So with trepidation in my heart I went to the endodontist to get fixed up.

I've heard many a Fibro patient complain about the pain a visit to the dentist can cause. Somehow I had managed to evade that experience first hand, until this root canal that is. But sitting in that chair tipped back with my mouth propped open and head hinged back for an hour and a half quickly had me skidding teeth first down agony alley. First my jaw, which suffers from TMJ, clenched up. Next the muscles and ligaments surrounding the base of my skull and neck went into an inflamed spasm so severe I thought they were gonna snap. And then trauma set in. The tiny whisps of smoke and smell of my sizzling flesh as he cauterized my tooth canal sent me over the edge.

With trembling hands I left the office and went to my car where I promptly burst into tears. It doesn't take much to evoke my hair-trigger post traumatic response surrounding all things medical. As I sat and sobbed I took my mental journey back through every traumatizing pancreatitis hospitalization and the scariest two days of my life, those 48 hours when I'd had my strokes but they didn't know why my head felt like a sledgehammer struck it yet. I felt alone and small and buckets of fear. I remembered the high I felt when my doctor told me I was going to live. I dragged myself through nearly two years of painstaking and exhaustive recovery as I fought for the umpteenth time to get my life back. Then I looked up and dried my tears, noticing that the sun was shining and I was still here to enjoy it. So I said a quick prayer of thank you for the gift of my life and drove myself home.

Thanks for joining,

Leah

Let's Go Waste Some Time

2013-02-25T13:27:00.000-07:00

I feel an excessive need to achieve. Still after all this time chronically ill my type-A drive hasn't gotten lost. Buried under a pile of laundry? Oh yeah. Fluffed up into dust bunnies the size of Weepuls rolling across my hard flooring? You betcha. Masked for years at a time behind medications, intentionally stifled and just plain ignored? Yes, yes and yes. But it always comes back to propel me to the next destination in my life. At some point along the way I had to accept this is just me. Will I spend the rest of my days driving myself nuts because I cannot meet my own expectations? Probably. But I figure banging my head against the proverbial wall of change is worse. Because at this point I am who I am. I've tried to change and this is what I am left with.

This weekend my husband asked me if I wanted to go to the coffee shop. He wanted to stroll through Spanish style architecture and interior design photographs on the computer. "It's a totally useless waste of time but it's fun," he said to try and entice me into playing, Let's pretend design our dream house, a game we both enjoy. His phrasing struck me like a slap. "This is what is wrong with our world," I shot back. "We view fun, mindless and relaxing activities as frivolous when in fact they are some of the most important things we can do."

Yet one more casualty of adulthood, being for the sake of being. Because just chilling out and relaxing in the moment on a mindless activity doesn't put dinner on the table or pay the rent. It doesn't help the kids with their homework, find a doctor who knows how to treat Fibromyalgia or approve a person who can't work for disability. It doesn't result in promotions, raises, clean houses or folded laundry. Something I had nothing but time for as a youth doesn't even register on my priority list as a grown woman with a life to accomplish. But not taking moments of relaxation and enjoyment makes me grouchy and take life far too seriously, and ultimately hinders my progress far more than a few wasted hours of fun. So what did we do? Grabbed the computer and dogs, jumped in the car and went to that coffee shop. It was a nice day out but the glare on the screen was terrible so we really didn't look at all that many pictures. But we sat in the sun and sipped our frothy beverages and talked about a million different things, and nothing at all.

Thanks for joining,

Leah

It's Just Harder

2013-02-20T00:39:00.000-07:00

Sometimes I get so entrenched in life with chronic illness I forget everyone doesn't suffer from some terrible malady or another. Don't get me wrong, I know we all have our problems, issues and drama in life. But not everyone is sick. As I listened to a friend plead despair the other day over how darn hard this is, how unfair it is, how it hurts so bad to not be understood on both a physical and emotional level, I could only nod my head in agreement and offer my shoulder. Life is just harder when chronically ill, it just is.

I find I have to get up each day and pray to God my chemicals aren't off and I'm not in pain. Which is actually quite funny considering I suffer from a central nervous system pain syndrome. Needless to say my chemicals are usually a little off, and I'm frequently in pain. But the show will go on without me, if I fade into the wallpaper and give up my fight, so I muster up my strength and try to join in every so often. I find myself bargaining my way through many setbacks and disappointments but I'm not quite sure if it's Fibro or me I am negotiating with, or what good it will even do? And quite frequently it seems if I don't rise from the ashes, adjust my expectations and decide the only person who is going to change the situation is me, I get taken down.

Is this fair? That my illnesses elicited a chain reaction of devastation in my life and I am the one who has to suck it up and work 50 times harder than the next person to simply survive? I don't think so. I also don't think fair much matters after kindergarten, for it seems to be a state of affairs not often experienced in the grown-up world. Once I got over expecting fairness I started accepting my life. That acceptance led to resistance, which I'll admit got pretty hairy at times, but ultimately led to change. A very painful metamorphosis critical to the forward progress of my life.

Thanks for joining,
Leah

But I Get Up Again

2013-02-08T18:29:00.000-07:00

This morning I am jogging down the street with Yorkie & Porkie. A bit perturbed the gardener across the way was pointing his leaf blower in my direction? Yeah, I was. Most individuals stop and wait for you to go by or point it somewhere else at least. So I am running and thinking about how rude that was and how the debris flying in my direction will irritate my senses. And that's when it happened. Suddenly my body is not in my control. The sidewalk looms closer with each instant and before I know it I am on my face on the ground with a thud!

Now somehow I managed to realize it was happening in enough time to relax my body and let my hands and knees take the brunt of the fall. I mean I'm only 5'5", it's not that far down. Hopefully my subconscious action spared my back and shoulders an exacerbated state of pain. But a second after I hit the ground I look over and Yorkie is in the street! And it's a busy street! Luckily it was clear at the moment. But the sheer surprise of the fall and resulting clumsy negligence with my dog's life scared me silly. So Yorkie got scolded and kissed, then I got up and looked at the tiny pebbles embedded in my palms. My pants weren't ripped so I assumed the damage to my knees wasn't all that bad. I don't even think about the gardeners who must be laughing themselves silly at me. We start to walk home and I cry like a little girl the whole way. Porkie is so sensitive, and totally freaked out already, straining with all her might to get away from her emotional and unpredictable mother. Between sobs I can't help but repeat over and over, "What's next?" Because I was certain my life was nothing but a ball of calamity (I still haven't told you about what happened on Wednesday) waiting to unravel.

Well I realized, as I am wailing to the world and inviting every bad thing to come and happen to me, that I was doing just that. And if I expected my life to be nothing but a turnstile of mishaps I really couldn't ever leave the house again. I mean it's a cold, hard, unpredictable world out there, right? But the thought of sitting in that misery, certain doomsday is on my doorstep waiting for me to step outside, well that could really be the end of me. Because the truth is I don't have any control and I've hurt so much already I just don't think I can take anymore. So there I was about ready to have a full blown anxiety attack and turn into an agoraphobic forever. But instead of defining my life with fear I decided in that instant to turn that frown upside down and expect good things to happen. I didn't see any other choice than to fearlessly go out into the world and, obviously paying better attention to what I am doing, live my life. So I started chanting, "Good things happen to me!" over and over. And for good measure threw in, "Good and healthy things happen to me. Where is my next good or healthy thing?" Expecting good not bad. I mean really, as I lay in painful misery for the next three or so days, what have I got to lose?

Thanks for joining,

Leah

God Bless The Farmer

2013-02-04T16:14:00.000-07:00

The tears came easy. As powerful still images and the commanding voice of Paul Harvey gave us a two minute foray into the life of the American farmer I froze. The ethic of hard work, endless toil and a never ending relentlessness to keep going no matter the hardship is mine. Nebraska and Illinois, that's where my grandparent's farms were. That's where my parents learned what their parents taught them and they in turn taught me. You just keep going. Life isn't glamorous, spectacular or exotic. Fancy cars, big houses and expensive vacations don't matter. There is God, family and soil. That is what matters. That is all that matters. There is doing what is right, fair and just. Sticking around to deal with the problems one inadvertently creates. Seeing it through, no matter how tough or sticky or ugly or sad. And quite simply doing what one is supposed to do. That matters.

That ethic has both harmed me and helped me, equally so. When I got sick I didn't have the time to be sick. I didn't have the luxury. So I pushed myself forward like I'd always done when faced with hardship. It's just what you do. I had bills to pay and a life to live. A husband whose life went down in flames if mine did. A boss who wouldn't keep paying me if I wasn't working. A family who didn't understand the choices I was making along the way. Fibro does this strange up and down thing, so for a few days I would be okay. Then suddenly I couldn't get out of bed, but nobody knew why. Once I was able to return to my duties I ignored the mounting problem separating me from my life because I had no clue how to tackle it. But soon enough I was knocked on my ass again. We did this, my work ethic, illness and I, for the better part of a year before there simply stopped being the days I could get out of bed and live my life. I wanted to die. My work ethic had not served me well.

But the benefit of my genealogy wasn't all bad. Because there eventually came a day when my mind accepted what my body was experiencing and I set out to figure out how to get better. Would I have gotten here without the evolutionary advantage of my ancestors fighting for their own survival every step of the way? If those before me weren't someone who plowed deep and straight and not cut corners? What if my mama wasn't a little girl who had to tromp through the January snow to the outhouse to pee in the middle of the night? Or if my daddy took off when the going got tough like so many daddys do? As I watched the Super Bowl commercial in awe, a powerful homage to those so seldom touted, I sent a prayer to heaven. Thanking God for my life, and those countless souls which came before me that made me who I am today.

Thanks for joining,

Leah

The Lost Joy Of Living

2013-02-01T19:07:00.000-07:00

I signed up for a screenwriting workshop and attended my second session today. Once a week for three hours I get to intellectualize and hypothesize with a round table of folks I have absolutely nothing in common with. They don't know me from Adam, and I know sorry little about them, seeing as I have a hard time remembering details like people's names. But we are bonded by the common desire to animate a story we wish to tell. It's wonderful. Having to be somewhere, establishing an identity beyond wife and blogger, using my brain creatively.

But as I am driving there with the bright warm Arizona sun shining over my head and Eminem blaring from my speakers the feeling of how excellent, how marvelous, how truly wonderful being alive and out in the world, actually is. See I wouldn't exactly call myself a shut in, but when I had the strokes in 2010 and left my job I effectively severed my anchor with the outside world. In the two years of insane recovery I have been through, blogging, The Crusade and The Fun House have been my saving grace. My link to a world beyond me. Unfortunately without physical tethers to the outside world it is easy to lose relevance and a sense of placement in society. Many a day I've lamented how bad it sucks that this is where my life is at. My identity sits vacant.

Hope is critical through every stage of this journey. Tiny little baby steps of hope gain momentum along the way. When I was disabled and couldn't leave the house for more than an hour I bargained with myself. I figured I was functioning at about 10% of my healthy capability and vowed I would not stop fighting for my health until I got to 70%. To my relentless type A personality anything less was unacceptable. I laugh now, eight years later, having endured so many triumphs and even more set backs. So little is actually in my control. But each day I will insist that just because I got sick again and again and again I am no less deserving than the next person. It's my sunshine, my music, my life to live too. And I am going to live it the best way I can.

Thanks for joining,

Leah

Lean On You

2013-01-25T19:24:00.000-07:00

For some time now I have been silent. Haven't had much of anything to say in this blog. Nothing inspired, anyway. I feel like I have said it all. Again and again and again. The same thing over and over until I am sick of hearing myself whine. One day up, the next day barely getting out of bed. Hoping for another up day, not knowing how long I will wait. Maybe if I try this or do that or wear magnets on all twenty fingers and toes I can participate with those I know and love in this brutal, viscous, hungry game called life. I got sucked into a pathetic reality show, Secrets Of A Trophy Wife, and stared mesmerized at Kim Kardashian look alikes pumped full of silicone and collagen and botox driving around in Bentleys. It was better than a bad car accident, I just couldn't look away. But for three days after I couldn't do anything but compare myself to them, and the $115 million reasons that separate them from me. I felt like a loser, pathetic, sorry. "But you got sick!" my angel said. "Doesn't matter," the devil spat from my other shoulder. "It's no excuse."

And then I read my friend's blog. Mid way through the sob overtook me. Fat tears rolled down my cheeks as the cleansing and healing experience of knowing someone else lives the same whack ass reality I do quenched my emotional pain. And I got it, why I write this blog. I remembered why it's important to the scope of my life. I remembered that even at my healthiest I shunned Orange County trophy wives with a vengeance. I never wanted to fit in, be one of the crowd, like everyone else. I never wanted to do what I was supposed to do. I just wanted to be me. So why on earth do I care about that now? With a shudder I realized it's because I can't. Even if I wanted to, I can't. And that sucks. Having options taken away from you, even if they are options you never even wanted in the first place.

I have no more grace or dignity with these viruses and conditions sucking the life out of my bones. I have nothing to give and I’m losing the drive to stick it out. I’m angry. I feel the losses every day. Fibromyalgia mocks me. I don’t recognize myself in my behaviors anymore. I’m sullen and sarcastic, morose and private, believing again that I do not deserve to be loved. I've said too many unkind things, exhibited too many harsh tantrums. I've become a shadow. I covet, I yearn, I grieve. I even hate sometimes. How can I be lovable? Girl Interrupted ~ Sleeping Beauty Awake

Thank you my sister for writing my heart. For reminding me why ripping mine open all over the world wide web wasn't such a bad idea after all. And renewing in me the purpose of it all. Survival.

Thanks for joining,

Leah

Fight And Flight

2013-01-15T00:09:00.000-07:00

I've spent a lot of time reflecting on my Fibromyalgia journey lately. Obtaining a managed level of symptoms is no easy task, but I was actually doing well enough for long enough to gain some of that precious perspective called hindsight. The separation between super sick me and moderately managed me was large enough to gaze with startling clarity through the thickly webbed stills of history and see all it took to get me here. Each choice I made on a journey I didn't believe had choices when I was living it. The tremendous dose of a horrible reality I nursed on daily as I navigated my way through endless attempts to overcome this beast of burden. And the soaring joy I couldn't contain as my pain became managed and life became livable again.

What jumps out the loudest is how many layers there are. Because for each triumph there was a thorn ripping my side apart. For every excruciating flare a day when the torture finally ended. Every heartache a win and achievement a price. But the biggest question I keep asking myself, reverberating around my cranial cavity day after day, is how do you accept and fight against something at the same time? We were designed with a flight or fight reflex. Fight or flight, not and, right? But had I abandoned either objective I don't believe I would've been successful in my venture. One simply cannot accept the hell of unmanaged Fibromyalgia as life forever, not if we want to get any better. Conversely one cannot even begin to address the underlying environmental and lifestyle breakdown exacerbating this illness if we don't stop fighting and accept it, and then learn how to live with it.

Good vs. evil, yin vs. yang, success vs. failure. Time and culture are ripe with philosophies striving to balance oppositional forces. We chronic illness patients are not unique to this struggle. In fact it seems to be a theme richly intertwined with the human plight. I finally realized the way to not let the totality of my objective obliterate me was to utilize time. There is a time to lie down, and a time to rise up. A time to take a deep breath, and a time to let out a loud yell. Often these aren't choices but boil down to the necessity of survival. Breaking time into tiny capsules, even though I was often only able to deal with one at a time, gave me a holding place for the rest of my burden. I couldn't carry everything at once, and when I finally stopped expecting myself to, realized I'd gotten much further than I ever thought I could.

There is a time for everything, and a season for every activity under the heavens. 

A time to be born and a time to die... 

a time to weep and a time to laugh, 

a time to mourn and a time to dance, 

a time to search and a time to give up... 

a time to tear and a time to mend... 

a time to love and a time to hate, 

a time for war and a time for peace.

~Ecclesiastes 3:1,2,4,6,7,8

Thanks for joining,

Leah

You Know My Pain

2013-01-06T02:16:00.000-07:00

Two things happened recently that made me take pause. Or more to the point, my reaction made me take pause. First was a good friend who got the flu. She was at work and feeling very ill. With disbelief in her voice she explained how terrible she felt, and horribly irritated she was to not leave work early and head home to bed. It was New Years Eve and she'd already used all her vacation time for the year so she had to tough it out for a few more hours. I commiserated with sympathy, I really did. Boy do I know that well, pushing through a day of work with the flu. Except mine didn't go away in a few days or weeks like everyone else's does. Nearly eight years later I still have it, and a whole slew of other problems too. I know I am more than a little bitter about it. So while I cushioned her venting with appropriately placed interjections of, "That sucks!" and "I am so sorry!" my mind got downright nasty.

Because it took everything I had not to scream at the top of my lungs, "That is what I have felt like for eight years, but worse, far worse! Could you imagine eight years? Eight years? Do you think you would survive it? Do you?" Then I had to get a grip. This is a supportive and dear person in my life who doesn't challenge my illness, it's validity, any of it. She takes me at my word and loves me anyway, and had clearly done nothing wrong to deserve this outburst. As I settled down a blanket of maturity came over me. I felt satisfaction in knowing my friend doesn't know the hell of my illnesses first hand. I wouldn't wish it on anybody. But I also felt proud, because I've survived something insurmountable and damn it, I'm just strong at this point. There is no reason to "prove" my misery to anybody because I ain't seeking approval. C'est la vie, it is what it is, my life I own it. Ramming my truth down her throat wouldn't do anybody any good. So I kept my mouth shut.

My dear husband, however, wasn't quite so lucky. He hurt his knee carrying some stuff down the stairs. It got him bad and for six to eight days he bitched and moaned about it continuously and was a total grouch. After a few days I asked him if I could be honest. "Sure," he gulped, and gave me a suspicious look. "I am so sorry you got hurt. I am. But I have to tell you, your constant complaining made me realize it was really bothering you, you were really in pain. And you know what I thought?" I could all but see the look of reluctant engagement on his face. "I feel bad, I do," I said. "Get on with it," he said back. "Well it sucks you are in pain, but is a good reminder to you when I am doing nothing but kvetching and moaning this is the kind of misery I am in. And it is hard to be nice or do anything but focus on it." And I do have to say he took it quite well, he really did.

Thanks for joining,
Leah

Reflection Of Progress

2012-12-27T16:48:00.000-07:00

When I started this blog I had just been through living hell. Four pancreas attacks were behind me. CFS/ME had been pinned down as a very real virus that infected my central nervous system and severely eroded the integrated systems of my body. While not "gone" (viruses don't leave) that too was treated and managed and I had resumed a quality of life previously unattainable. Meaning I could work part time and somewhat function as a contributing member of society. Fibromyalgia was not behind me, per say, but I had jumped off the merry-go-round of intense pharmaceuticals and their life altering side effects and found a better way to manage it. Everything I'd been forced to learn through my years of illness started making sense. I experienced the awesome power of the human body's ability to heal itself through the fruits of holistic principles. No, I hadn't abandoned modern medicine, but instead utilized its slim offerings in conjunction with myriad other ways to get back to livin'.

I sat down at my computer one spring day in 2010 and, having never even read one, started a blog. Figured I knew a thing or two about how to survive this monster called Fibromyalgia and thought it would be an excellent way to practice and improve upon my writing skills. I'd set my sights on starting my graduate degree in English Literature and knew I needed the practice. So I wrote. It was like a journal. Sure it was technically published on the world wide web, but if nobody knew about it how on earth were they to find it? I certainly didn't have the guts to actually tell anyone about it. However I believed the worst was behind me and it is from that point of view I focused my perspective, as a survivor. But how does one know the worst is behind them when they haven't lived the future? Because by the time summer was nearing its end I'd gone and had two strokes, severely life threatening ones I barely survived by the hair on my chinie chin chin. And that's when life went real bad.

The first six months on high dose steroids were easy, in retrospect. I got those guts I didn't previously possess and shouted my blog from the rooftops. I became enraptured with the cause, devastated by each personal story I heard of how horrifically detrimental Fibromyalgia can be to a life. Sweeping urgency consumed me. I had to do something about this and I had to do it now! The state of affairs was in shambles, patients were terribly mistreated, a clear and absolute voice on how we were going to change things didn't seem to exist. Feverishly I blogged and started an awareness campaign and Facebook page and became full of frenzied certainty I was going to be the one to turn this very big problem on its head. And then I got off steroids and discovered I was actually a hot mess of the worst proportions. I'd gained 40 lbs. Fibromyalgia pain consumed me like when it had previously disabled me. My cognitive abilities were screwed up. I possessed absolutely no stress response and would melt into a puddle of jello if someone so much as gave me a dirty look. I couldn't problem solve or think quick in a fast situation. I couldn't even do two things at the same time, like walking and talking, for crying out loud. Like I said, it was bad.

So bad, in fact, I will assign the last two years as the worst of my life. More than a few times I didn't think I was going to survive. But through the grace of God I did. One step at a time, one day at a time, one challenge at a time. All the while I tried hard to stay true to those holistic principles which helped me reclaim health once before. It was with great challenge I attempted to maintain my voice as a Fibromyalgia survivor when my own personal walls were caving in around me. Sometimes I could and sometimes I couldn't. But if there is one certainty in life it is that time moves forward, and slowly I found my footing again. I started jogging and dropping weight. I stopped reacting to every bit of strife with epic meltdowns. I remembered how to roll stuff off my back, not freak out about what I couldn't control and put my energy into things which yielded goodness. I didn't so much wake up one day and everything was better. No, not at all. But I did pause one day not too long ago and look back to see a lot had improved. So I kept going. I reduced some medications, started keeping up the house a bit more and began counting on myself again. I took a creative writing class and got some great feedback on the novel I am penning. Checking my messages and answering the phone were no longer fear gripping activities. I wasn't burdened with the sheer weight of my own existence anymore, I was actually living my life. Not the life I lived before all these health problems took over, but one where I discovered there still is a lot to smile about.

This blog has ridden every wave of my journey with me. High and low, ecstasy and agony, good and bad, laughter and heartache, it is all here. Raw and imperfect, as I myself so certainly am. I'm not the superwoman who started The Fibromyalgia Crusade. My lofty ambitions have fallen very short. But in redefining life so it works for me I've had to reassess my commitment and discovered nothing has changed. My heart still beats to see a world where Fibromyalgia patients are not blamed for their illness, treated like it is an optional condition they are too weak to push through. My efforts still very strongly promote this cause, but are far more conservative and reflect what this one woman show can actually do. I am honored to have shared my experiences with those who have searched for ways to cope and found me. Without this blog, without you readers, without the anchor of responsibility as not the, but a voice of this illness, I don't believe I would be standing where I am today.

Thanks for joining,

Leah

Sleep, Where Are You?

2012-12-21T12:55:00.000-07:00

Here I lay, trying to sleep. I've counted all the sheep in the pasture, backwards from 100, an entire rosary and mentally landscaped the backyard of my dreams. It's very pretty, with fountains and rose gardens and organic vegetable patches, and lots of green grass for the pups to get their jollies on. But alas, my brain just won't shut down. I almost dozed off once, but I didn't. I even pretended my husband's snoring was ocean waves crashing into the shore. I attempted to meditate and it made my brain hurt, trying to think of nothing. I came out to the sofa, theorizing I was putting too much pressure on myself and needed a change of venue. Nope, no sleep. The longer this goes on the more hyper I get. The more frustrated and uptight and bent out of shape. Which does sorry little to help me sleep.

No, by the time six hours had past I was worked into quite a tizzy. I saw tomorrow flash before my eyes. Headache, bitchy, exhausted, miserable. Then I started in on the victim dance, not wanting to have a headache or be bitchy, exhausted and miserable. I've got quite a bit to do tomorrow! Which is today, but doesn't feel like it, because I've been awake for so freakin' long. The victim dance conjures the bitterness dragon, because shortly after that I got all mad at my life in general. The way my under eye bags look packed for a month in Europe after a night like this. The terrible memory of how quickly these ramped up central nervous system induced nights of insomnia would take me down when I was working. And then I stopped and got a grip.

I will survive tonight. Chances are, as soon as that globe of fire we here in Arizona call the sun peaks it's early tentacles into the night sky I will be out like a light. Or if not today, I will this evening. All the important stuff that must get done most likely will, or it won't, and that too I will survive. If I stopped crying in victimized frustration it would help minimize that under eye puffiness I think makes me look so old. And if I remember I am not a victim, but a victor who faced a frustrating setback in a way that could use improvement, it would make it easier to not be so hard on me. I tell myself these things and think I'm calming down, relaxing my tense muscles and wigged out mentality. Oh me oh my, could it be? I think I just might be getting drowsy...

Thanks for joining,
Leah

I Want Their Life

2012-12-13T10:27:00.000-07:00

My husband and I were sitting outside the coffee shop with our puppies last weekend when a man came strolling by with his three children. He was a pleasant looking fellow I guesstimated to be about 50-something. The children looked six and under, with one in a stroller. I thought to myself how nice this picture of healthy and normal Americana looked. I imagined mom was at home resting and her dutiful husband had taken the children off her hands for the morning so she could have some much needed "me" time. Boy was I ever wrong! Mama walked out of the coffee shop a few seconds later and when she joined up with them I was quite surprised, to say the least. She was young and hot! Looked younger than me with a phenomenal body, muscles rippling under skin-tight yoga gear with a caboose that would not quit. I looked at my husband and said "Boy, I sure didn't expect that one!" He agreed and diplomatically commented she looked like she took good care of herself. When I pointed out her perfectly round derriere he reminded me she worked hard for her figure. I sipped my coffee and wondered off into dreamland for a few moments as The Cleavers piled into their Porsche Cayenne. It was easy to surmise the charmed and privileged life this perfect looking family must have. I ain't gonna lie, I coveted. It looked so normal, so picturesque, so enviable.

Now I know I was presuming a lot, and it's silly to think they don't have plenty of their own issues. I mean how many episodes of Real Housewives does Bravo have to make to tell us nice things don't make happy people? But the irony of appearances was not lost on me. Isn't this a topic I am always bitching about, how frustrating silent illness is? That because Fibro doesn't exhibit external signs and symptoms the patients have to fight extra hard to be taken seriously? People assume a normal looking individual is healthy, and it's not unreasonable for them to do so. But there I was, I'd just gone and done the same thing I frequently get all hot and bothered about. I assumed because their life looked charmed, it was charmed. The judged had become the judger.

I am still marching toward that bubble gum life. One of rainbows and unicorns and happily ever after. I don't want any more pain or to struggle and have issues and grief. I want them all to just go away, to have never existed! That is the girl in me. The woman in me knows that with the anguish would also go the knowledge in my head, the compassion in my heart and the drive and determination in my soul. There is something that comes from struggling in life, a depth of spirit that manifests itself deep within the soul and breeds a strength of character, a sense of self, a cause of purpose. So I must strike a balance. Strive for health and freedom from illness but also remember how far I've come. Keep my perspective so the bad days don't take me down any further than they have to, and work toward the good days to far outweigh them. So while I may look at that family and assume life is peachy keen and easy for them, there is no guarantee someone is not looking at me with my outrageously adorable puppies and devilishly handsome husband and assuming the exact same thing about my life.

Thanks for joining,

Leah

Not A "One Size Fits All" Holiday

2012-12-07T20:19:00.000-07:00

The season of giving is upon us. But it can be hard to give when one doesn't have enough of their own. Be it time, money, health or energy, a deficit is a deficit. It's quite a controversial practice to keep doling out more than one is taking in. Defies logic, even. Yet many people will tout the benefits of giving over receiving. Feelings of serendipity bloom in me when I am able to give freely and without concern for reciprocity. But for so many years I couldn't even get myself up and to work every day without catastrophic weekend meltdowns. If money hadn't been an issue, time and health were surely standing firmly in my way. I miss the joy of giving, of not stressing over my own survival, of engaging in the give and take of life's relationships. All things I am working so hard to get back from this nasty illness.

I remember the years of CFS/ME when setting the table and opening a bottle of wine was the sum of all I could do. How to communicate that to healthy people, that I'm not just sitting here staring into space slack jawed for fun? It's because a battle was being waged between my body and mind inside me? Quite frankly I couldn't believe my reality. I know I wouldn't be able to comprehend it if I hadn't experienced it first hand. Like many things in life I don't know if a person truly can.

What Fibromyalgia has forced me to do is step out of the madness of frantic shopping and frenzied wrapping. Of blowing credit card limits to get that oh so perfect gift for every person on my list. I haven't sent cards in years because quite frankly, I really didn't have anything positive to say. I was sick and my life was coming apart. And I couldn't afford the postage. No, for the last five years I had to sidestep the usual holiday beehive because I was in a huge deficit. What's funny is I discovered by refocusing my efforts there is still plenty to enjoy. Spending time with family and the excited snap in the December air. Whipped up egg nog and the soft glow of a twinkling tree. The little children at church acting out the Christmas story. Chanting, "You'll shoot your eye out!" along with the TV like we have every year since 1983. I've come to realize giving doesn't have to be nearly as exhaustive. There aren't as many people on my list, I don't get as many cards in the mail and there aren't as many gifts under my tree. But that was the life I got sick in. This one is much smaller, and suits me far better.

Thanks for joining,

Leah

Your Child Is Schizophrenic

2012-12-04T15:23:00.000-07:00

A neurological disorder of unknown origin, known today as Autism Spectrum Disorder, was at one time classified as Childhood Schizophrenia. This was during the early days of framing the condition in our modern medical system and all sorts of rumors abound. We now know it is not caused from a frigid mother or bad parenting. It's pretty common knowledge a person on the spectrum does indeed have feelings and is able to form relationships with other people, as unique as those relationships can often be. And undoubtedly some autistic people can't speak, while some can and not all are savant, but some are. While modern medicine hasn't unlocked the puzzle of what makes autism occur, tremendous advancements have been made in treatment options and public awareness. Lots of folks recognize the colorful ribbon with a million little puzzle pieces unique to the spectrum, even those with no direct relationship to the condition. All this progress serves to insure autism is no longer recognized as a mental illness but instead the complicated neurodevelopmental disorder it actually is.

My little brother is autistic and I watched my parents struggle through quite a fight to raise their son. Their battle was not only in managing an angry and confused little boy with overly sensitive sensory abnormalities and disconnections, but in fighting the world at large to understand and accept who their child was, what was wrong with him and where he fit into society. I am thrilled he has grown into quite a self-sufficient young man who now lives in his own apartment, holds down a part-time job and is on a relentless quest to find the love of his life. He is successfully independent today because of the heart and soul my parents poured into him, pushing and fighting for his progress every step of the way. I was at the coffee shop the other day when a family came in. Their young son was a bit wild and making a distinct moaning/yawning sound I recognized right off the bat. The barista leaned over the counter and asked the parents if their child was autistic, for he too had an autistic son, and they started a lively conversation sharing their experiences. Wow has awareness come a long way from the dirty looks and angry stares my family used to get back in the early '90's!

As a Fibromyalgia patient I can't help but draw some parallels here. I often find myself in a similar double dual. Fighting to squeeze the best life I can out of myself while railing against the ignorance, misnomers and lack of public awareness this illness is entrenched in. Searching to find my niche in society where I can be productive, successful and happy. It's a challenge, but like my parents before me I believe the fight for public awareness and acceptance of this illness is my responsibility, for it is my reality. I cannot wait around for science to figure out what causes it or medicine to discover a way to cure it. It's taking too long! Hell, they are still searching for a test to definitively prove we even have it. Autism is still waiting for these advancements as well, but out of sheer necessity the community has banded together and their voice has been heard, recognized and respected. By joining efforts we are following the trail blazed by those before us. Folks who have fought tooth and nail to bring awareness to something evading definition, an illness as confusing to the patients who have it as those who don't. We are not alone in this charge, and are getting there slowly but surely, inch by inch. Each person's effort to raise awareness, better their life or improve their circumstances, that is what is going to turn Fibromyalgia into a "They used to think it was..." illnesses too.

Thanks for joining,

Leah

Dear Fibromyalgia,

2012-11-26T18:46:00.000-07:00

Oh you nasty little bugger. You've changed my life in so many ways since we met in 2005. In fact, very few relationships have impacted me as quickly and completely as the one I have with you. While I've been certain you were going to take me down more times than I can count, somehow I find myself sitting here today stronger than you. Much stronger. I've changed in a lot of other ways too. Patience, compassion and courage have taken on new meaning in my life. Empathy and acceptance as well. Gratitude for things great and small replaces oodles of entitled expectation. Usually. And my understanding of this world, how it works and the place I fit into it has been revolutionized beyond my wildest imagination.

But it has taken me so much to get here. Insurmountable challenges I never though I would overcome. Grief, despair and heartache so grand I didn't believe there was anything else in this world I would ever feel. Except for the pain. Oh that pain. I try to describe you, but the words I can find are like taking a piece of broken glass and telling someone to see the brilliance of a cut diamond. Pathetically inadequate.

People used to tell me I was creative, but the creativity you forced me to create, well it's astounding! How to see good in bad, happy in sad, satisfaction in want and satiation in neglect. The art of taking a challenge and turning it into an opportunity to do better. Realizing there is no longer a heartbeat in yesterday, and it still has yet to find tomorrow. There is only one place life exists, the beating pulse of today. Because learning how to accept you is how I recovered much of what you've cost me. For all that you have taken, there is so much more that I've gained.

Thanks for joining,

Leah

A New Leaf

2012-11-19T14:08:00.000-07:00

Ever since I admitted some hard core truths to myself and set about to stop living with guilt boulders burdening both shoulders I have been feeling loads better. It's amazing how many things there are to get stressed about in life. It's even more amazing to realize I don't have to feel responsible for fixing every single one of them. It's not like I could anyway, but the expectation was sending me, via a very expensive one way ticket, on a slow boat to crazy. This paradigm shift has been huge, and not just for me but my entire household. I am present. I am productive. I am happy. And I've been physically feeling pretty darn good too. This means things are getting done. Instead of sitting around feeling awful because my life is my life I am actually living my life. The more I do this the more my previous years of misery start to make sense. It's positively astounding how many little things I was unwittingly allowing to disturb my progress to health.

Sadly my latest lilac run once again came to an end. I woke up Friday morning crying. So sore, I felt like I'd slept on a pillow of rocks, if you could even call it sleep. There was a burning coal of fire sitting on top of my right shoulder. Nerve pain zipped up and down my right side and the mass of my cells felt too big to fit in my skin. Every inch ached and throbbed. Initially I got mad, then I calmed down and realized I had an opportunity to change some patterns here, the way I react to a flare. Using my three questions that got me to lilac in the first place I assessed the situation. 1) Do I deserve this pain? No, I didn't do anything to warrant such punishment. So I set my immediate goal to work towards feeling better. 2) Is there anything I can do about it? Yes, I can work towards feeling better by taking care of myself. In the past I would flog myself for about a day for getting the flare in the first place, only serving to exacerbate it, which really makes absolutely no sense at all. This time I was determined to be different. Because number three is the kicker. 3) Can I calmly and rationally set about trying to feel better, from something I didn't inflict purposefully and maliciously on myself, by taking care of myself without feeling guilty? And that, my friends, was the million dollar question.

Somehow I was actually able to pull it off. I guess you can teach an old dog new tricks after all! But the next best came on Saturday. My husband and I are driving to Costco and I feel awful. He starts to set about all the ways he knows how to try and "fix" me. I know this illness is as frustrating for him as it is for me but didn't realize we have our own pattern of how we deal with a flare as a couple. But on Saturday I saw it, clear as Christmas on December 25th. So I took his hand in mine and said, "Lookit, I am sick. You can't change that right now and I can't either. But we can stop the madness we have been existing in. I feel like crap, I just do. If I get bitchy tell me and I will reign it in, but it is what it is. This is life. So let's break the cycle of me feeling guilty and you trying to fix it. It's wasted energy. Let's just go to Costco!" And the best thing of all, what I am so excited to report, is we actually did.

Thanks for joining,

Leah