Thursday, February 28, 2013

Open Wide

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. 

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Monday, February 25, 2013

Let's Go Waste Some Time

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.

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Tuesday, February 19, 2013

It's Just Harder

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.

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Friday, February 8, 2013

But I Get Up Again

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?

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Monday, February 4, 2013

God Bless The Farmer

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.

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Friday, February 1, 2013

The Lost Joy Of Living

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.

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