Thursday, July 31, 2014

Little Girl Lost

I don't know how to pick up the pieces of my life and start over. All I know is I'm crying every day. Feeling hopeless, lost, and so much anger I can't even see straight. There's so much to do I don't know where to start. We're out of toothpaste, for crying out loud, but have I gone to the store to get more? I'm over halfway done writing a book I can't fathom finishing because my head is such a jumble of chaos. Exercising, juicing, pacing, releasing stress and embracing the positive, those all seem like relics from another lifetime, another person's life. I worked so hard to create an existence for myself in Arizona I could be successful at. Now I live in a place where it's too expensive for me to not work, I have a bevy of rekindled personal relationships to disappoint, and everything I try to do makes me feel like a colossal failure.

Boy, I really need to go watch that Transformation documentary on Werner Erhard that changed my life last summer. Clearly I've lost my grip on the mere concept of acceptance and moving forward in life, not looking back and trading the precious present to stew in the cesspool of a hurtful past. This is what happens when I get stuck on the reactive living train. Suddenly life becomes about what happens to me, not about what I make happen. Then it's a real quick slide into the mire of perpetual victimhood. It's pathetic. It's also my default, the mindset I lived with for so many years. Because honestly, when a person gets sick, life becomes about survival and reacting to what happens. It's the most out of control I ever felt in my entire life, and I absolutely hated it. Hate it.

Is there enough strength buried deep inside me to rebuild my destroyed psyche? All I feel is so much yuck, gobbling up my health, my stability, my future, any hope of having a life. But I want my future! I want the future I planned. The one where I get my book published, change the face of Fibromyalgia awareness in this country, and actually do something to improve the world I live in. Right now I feel so far away from that woman, the one who thought she could impact change, that it's like I never even knew her at all.

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Wednesday, July 30, 2014

I'm Back!

Finally, after over a month without internet, I'm sitting on my couch, on my own wifi, connected to the online world. This past month brought more chaos and calamity than I figured would find me for the rest of my life. But the bottom line is today finds me at zero. All the mental and emotional progress I gained over the last year, all that hard work I did to stabilize my existence, all that acceptance I swallowed to come to terms with my reality, well, it's crumbling down around me like the walls of Jericho. 

I'll find my footing. Perhaps there's still a bigger bottom to hit. Not much would surprise me at this point in the game. But simply moving one state over won't do me in. It may challenge me in new ways, shape me into a design I didn't know I wanted to resemble, cuckold me in the head a few more times, but certainly won't spell my demise. In fact, as I sit waiting for the refrigerator repairman to show up for the dozenth time, I'm beginning to think the grand lesson in this colossal, never-ending headache is to learn how to smile in the eye of the storm. I mean, after sitting in the direct path of pelting hail with no shelter in sight, dontcha just gotta start laughing at some point? Even if it's just to mask the rage-induced psychosis.   

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Thursday, July 17, 2014

My Demise

Los Angeles is beating the proverbial crap out of me. I’ve only been here two weeks, but so many darn things keep going wrong I’m sliding right back into survival mode. The one where at any given moment I’m prepared for an anvil to drop from the sky onto my head, semi-truck to careen into me from nowhere, and something as random as two strokes to strike my brain. It’s exhausting, living in a constant state of disaster preparedness. If things don’t start turning around quickly I’m not sure the town I’m from will allow me to continue. Over the years I wondered why I grew-up to be such a cynical, surly, hotheaded broad. Well I’m not wondering anymore! Simply surviving the insane drivers and aggressive, self-absorbed people I encounter at every turn is enough to make a girl want to crawl on her hands and knees back to the sweltering desert I just deserted. Or at the very least revert to my previous state of being known as ‘total bitch’.

I’m damaged goods. There aren’t enough pep-talks inside me to keep going like this. I’ve barely healed from the previous nine years of sickness and random tragedy. I finally got to a place where I could walk around like everything’s fine and dandy, even though it isn’t. I liked pretend land! Because for so many years I was in so much physical pain there was no pretending anything, there was just wanting to die. A bold-faced game of ‘blend into the land of the healthy’ seemed like such progress for me… Now it seems to be my undoing. Of course I’m taking on more than I can handle. It isn’t really an option. I knew when we decided to move I was foregoing safe and comfortable for a life I actually wanted to live. It’s doubtful I would ever have enough insulation around me to not feel the bumps and bruises such a rough transition delivers.

Harsh reality tells me life doesn’t give a shit if I’m sick. Mr. Werner Erhard’s est school of hard knocks tells me simply by being alive I’m entering into a consensual agreement to accept whatever the hell may happen in the future, along with the responsibility to fix whatever it does to my life. And too much experience living tells me things can still get a hell of a lot harder than they are right now. But the bitterness is taking over. I got sick and it ruined my life. Does that mean I'm relegated to wither away living the life that happens to me, not the life I make happen? Am I ever going to rise from perpetual victim-hood and soar among the clouds of my dreams? I didn't ask for this life and I didn't do anything to cause it. Yet still, the charge to fix it is mine, and mine alone.

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Friday, July 11, 2014

Lone Wolf In A Pack

Last week my husband and I put everything we owned into storage pods and left Arizona for good. The experience has been all the crazier because until we sign the lease on our new apartment tomorrow, we've been homeless. Not on the street homeless, but staying with family homeless. Prior to this upheaval I knew I was a reclusive, withdrawn, anti-social brat with little ability or desire to marinade my days away in the company of others. But even I didn't know how much I've come to rely on the ordered bubble of my solitary universe. It's hard, being around people all the time. I'm exhausted, stressed-out, freaked-out, wigged-out and overworked. Not to mention achy, fluish, and riddled with boils. However, despite so much insanity, I'm somehow holding it together. Most of the time.

Moving back to my hometown is intensely challenging my illness-life balance. While I'm thrilled friends and family are vying for a chance to catch up, I'm incredibly overwhelmed with obligation. Which makes me want to bury my head in the sand and run away at the same time. Or at the very least, revert to my former habit of not answering my phone or checking my messages. On the flip side, the voracity of my reluctance to engage socially makes me feel like an ungrateful child content to squander the affection of others. My brain tells me to get over myself and stop viewing people through duty-tinted glasses. I guarantee if the situation were reversed, and nobody from my youth gave a rats woo-ha about my return, I would feel a lot worse.

The extent of the grand challenge ahead of me is becoming clear. My Los Angeles relations have never really known me sick. Listening to someone bitch on the phone about how bad they feel is a far cry from a once-dependable person turning into a complete flake. I try to remind myself of how much better my health actually is, considering where it's been. Sadly that only flusters my inner type-A into reverting to the people-pleaser of my past. Then of course I try to rise to the occasion, and crash and burn into a puddle of my own frustration. Consciously I know there is no going back to my previous life-model. It simply won't allow me the focus, peace or solitude to maintain my health and accomplish my life. But until I get some order back in my universe, until my days are mine again, and I begin to de-stress from this wild ride life is taking me on, this lone wolf is having a very hard time settling into the pack.

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Tuesday, June 17, 2014

And Still I Rise

I moved to Arizona in 2008 a broken, battered shell of a woman. Although I was only 32 years-old, life was hardly done walloping the beat-down of a lifetime into the very essence of my humanity. Returning to work part-time meant I wasn't technically disabled, anymore. Leaving the cold of San Francisco took my daily pain level from a constant and pervasive Amethyst to a moody Mulberry. Relocating from practically the most expensive city in the country ensured everything wasn't going to be so damn hard anymore. Didn't it? Is this the part where I clutch my side and roll on the floor laughing?

With the good came bad, as is life. Phoenix was warm and affordable, and I was in less pain. But then all these other problems rose to the surface. Being sick for four years had sure done a number on my interpersonal relationships! I was on so many medications I felt like a Stepford Wife. The financial chaos my husband and I were sitting in was nothing short of its own tragedy. Slowly but surely we forged ahead, oblivious that the worst was still yet to come.

Like Lyrica served a purpose for a short time in my recovery, Phoenix was what we needed when we moved here. My feelings are so mixed about this place, though, because the worst time of my life also happened here. The most painful, mortifying and horribly ugly phase I never though I would have to endure, happened here. So did healing and a freedom from pain I didn't imagine could ever be mine. It's on the back of this double-headed coin that this phoenix rises from the ashes of ruin, and bodes farewell to the desert state. The woman returning home to Los Angeles in a couple weeks is so much stronger than the girl who left for San Francisco twelve years-ago, with stars shining bright in her hopeful eyes. I'm so much wiser, compassionate, and determined to prevail. I'm also meaner, crazier, and certain that whatever life dishes out, I'll continue to rise.

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Still I Rise

...Did you want to see me broken? 
Bowed head and lowered eyes? 

Shoulders falling down like teardrops. 
Weakened by my soulful cries. 

Does my haughtiness offend you? 
Don't you take it awful hard 
'Cause I laugh like I've got gold mines 
Diggin' in my own back yard. 

You may shoot me with your words, 
You may cut me with your eyes, 
You may kill me with your hatefulness, 

But still, like air, I'll rise...    

~Maya Angelou  

Saturday, June 14, 2014

Finding My Health Part I: The Dirt On The Juice

I'm a bona fide health-nut conspiracy-theorist. Getting sick with something science doesn't understand, and medicine hardly believes in, forced me to look past my medical doctor and his prescription pad. It's been a terrible, horrible, no good, very bad journey I wouldn't wish on my worst enemy. But what I can say is once I stopped looking for a way to get "better" from Fibro, and instead focused on being a healthy human, everything started falling into place.

Juicing literally saved my life. I was so sick with immune-suppressed viral symptoms I was quickly losing my patience for this world. Then I watched a documentary called Fat, Sick & Nearly Dead, which inspired me to give juicing a whirl. So I went to Bed, Bath & Beyond and bought myself a Breville juicer, then loaded up on fresh produce. My flu-ish symptoms responded to a fat dose of vegetable juice almost immediately. In fact, every night when I would drink it, I would feel noticeably better. It wasn't hard to keep at it with such instant results, especially when I would skip and feel like I smacked into the back of a semi-truck at 90 miles an hour.

The other benefits were astounding. My brain quieted down and I started to be able to fall asleep at night! Sleeping and not having the flu every day did wonders for my quality of life. I was able to institute a bit of order and routine, and actually began to count on myself for the first time in many years. Life suddenly seemed like it was worth living again. Then people kept telling me I was losing weight. I'd been exercising for a few years and slowly dropping pounds. Apparently once I started juicing it just fell off. But the biggest shock came when I had my monthly cycle. For years I would pop Vicodin and lay around in agony, feeling like knives were stabbing my gut from the inside out. That first month I didn't hurt nearly as bad. I took Advil and it...actually worked! I proceeded to go about my day and haven't taken a narcotic since. That was nine months ago.

I never stopped eating food, but drinking juice twice a day substantially cut down my hunger, so I don't eat as much as I used to. In and of itself, juicing is a time consuming pain in the ass. Although the inconvenience of shoving produce through a shredder doesn't hold a candle to Fibro. Nevertheless, I juice for three days at a time. While the juice looses nutrition the longer it sits, I still reap wonderful benefits and find it's a commitment I can actually stick to. It doesn't work if you don't drink it!

My breakfast juice is fruit based, which tastes better than the veggie, but many will shy away from because of sugar. I believe in the nutrition of nature and the important synergy of a balanced diet, which includes the fruit group.

Spinach (lots and lots o' spinach, you can't taste it)

My dinner juice is hard-core veggie juice. Instead of trying to mask the green with fruit, I celebrate the earthiness with a splash of Tabasco and Worcestershire. I also add a generous amount of Apple Cider Vinegar (with the Mother). Believe it or not, I now crave the greenish-orange sludge people laugh at me for gulping with glee. It's like taking a bath from the inside out.


While juicing hasn't "cured" my Fibromyalgia, it's doing a wonderful job of allowing my body to correct something severely wrong inside me. In conjunction with a million other random health quirks, I don't live at the mercy of pain and sickness every day. My results weren't achieved by a single effort, or in a rapid fashion. Instead, a life dedicated to seeking wellness, and a willingness to expand my definition of healthy, continuously guide my way.

Thanks for joining,

Tuesday, June 10, 2014

The Sky Is Falling

Not only that, but the world is ending, my existence is purposeless, everything is awful and there is no point in trying to make anything better, because it's always going to get horrible again in the end. It's pretty amazing, how quickly I can go from the top of my game to a blithering puddle of wasted humanity. In a sick way, it would be easier if I had a mental illness to credit said breakdown with. Because for the last 12 hours I've indulged more tears, 'woe is me', and desperation than a person should in a year, or at least a month. That big leap of stupid faith I blogged about a few weeks back is taking a wrecking ball to my life. My conscious mind knows my choice to indulge my fear got me here. The self-loathing and damage inside me won't let me stop.

I tell myself life will work out, because it has up to this point, so why would it stop now. I remind myself what I am facing is a walk down 5th Avenue compared to what I've already prevailed over. None of it snaps me out of the pit of despair, though. Because the bottom line is; THIS is the result of my releasing positivity. If I exist outside the realm of looking on the bright side, I slide straight into the depths of hell. And once I'm here, it takes so much fucking work to get back to where I was, I lose days of my life in the process! Which starts the viscous cycle all over again. The one where I believe the sky is falling, world ending, my existence purposeless...  

Could I possibly be more fragile? Am I ever going to heal enough to get out of my own way and accomplish life? If a positive, albeit scary, leap of faith forward in life does this to me, what on earth would happen if something bad actually happened? Perish the thought. I've got to find a way to get back on the 'anything is possible' train. The one where what I've endured serves to make me strong, not weak. The one where hard work and positive intention net wonderful results. A world that far exceeds the one I live in today, but is the one I plan on inhabiting tomorrow.

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Monday, June 9, 2014

Inspired With Ego

Today I wrote a ridiculously long blog about all the health quirks I employ to feel a whole hell of a lot better than I used to. It got so long and preachy I had to take a step back. But the experience did serve to remind me why I started The Fibromyalgia Crusade in the first place. Hallelujah! I've been in mortal agony over here about my abandoned love-child, and am overjoyed to rediscover her purpose!

Before I had two strokes my Fibro was pretty well managed. After being horribly disabled for a few years, I was working part-time and taking a Spanish class. When I got an A I realized my brain wasn't some fogged out, defunct old organ. It was actually capable of learning new material! I began looking into graduate school, and  I felt like my life might have a future. After I had two strokes I was high on high-dose steroids, to treat the Vasculitis that caused the strokes. I felt fabulous. Although I had to quit my job, drop Spanish 2, regularly spun into roid-rages of epic proportions, and lost my social life entirely, I felt fabulous. I spread the word about this blog for the first time in September 2010. Eventually my mission became to let the world know Fibromyalgia didn't have to ruin a persons life. After all, I was able to fight back once, and win. The Fibromyalgia Crusade was the vehicle through which I planned on delivering this message.

Except...once I got off that drug, my reality got really, really bad. For a really long time. The kind of bad where if one were a cat, most of those nine lives would've been gobbled up. By the grace of God go I. Somehow I've managed to fight back twice, and win. So here I go again. Over the next week or so I'll publish some details on what I've done to get my life back. Remembering my original intention was to let Fibromyalgia patients know Fibromyalgia didn't have to level a person forever, makes me feel outrageously egocentric. It's amazing how hard it is to face ones pompousness, without the shelter of pharmaceuticals to delude the picture! But when I got this illness nobody told me about hope. Nobody stood on top of a mountain of their own success, and told me I had so much more power than I realized. They told me to learn to live with it, accept it, take pills that made me feel worse. A few went so far as to tell me to figure it out on my own. So I did. Today I know so much more than I ever have before, and I know there is no one answer to the complex puzzle of Fibromyalgia. But for anyone who's interested, stay tuned. I'll break down what I did.

Thanks for joining,

Wednesday, June 4, 2014

The Purpose Of Primping

I tried to keep up appearances when I got sick, I really did. When I was first taken out of work for a month with disabling Chronic Fatigue Syndrome/ME, I spent what precious little energy I had putting on makeup every day. It was a silly priority, considering my right arm was nearly paralyzed, and I was too sick to even leave the house. But the makeup artist was so deeply ingrained in me, it seemed vitally important to not look as bad as I felt. And of course I didn't want to fall out of tune with my own high standards, and the pulse of the world around me. That was how I thought things worked, eight years ago. Today I can only smile at the naive little girl propping up her right elbow with her left arm to sweep that second coat of mascara on. If only she knew what was to come!

Things kept getting harder, I got sicker, developed new diseases, ballooned up from medications and inactivity, and completely and totally let myself go. Seeing as I was a hair's breadth away from losing my mind, the last thing I cared about was how I looked. Eventually I became the woman who was lucky if she brushed her hair and teeth each day. The clothes I threw on to take the dogs out when I first woke up were the clothes my husband saw me in when he came home from work that evening. Manicures, pedicures, waxing, puffing and fluffing, all part of that past life I no longer lived. The life where I had choices and opportunities and the most important thing I couldn't find, health.

Can I blame my progress in this area on juicing, too? Once my symptoms began stabilizing I started to be able to count on myself a little bit. Life wasn't a day-to-day free-fall of circumstance and knee-jerk reactions. One day I realized staring at my dirty, sweatpants-clad self in the mirror was depressing. Then it dawned on me a woman in such an unkempt state wasn't preparing to live her life. So I put my computer down and got my ass in the shower. I straightened my hair and put on some makeup. Then I sat back down on the couch, because something as simple getting myself fixed-up used all my energy for the morning. But I kept at it, health permitting, and grew to realize when I didn't take a bit of my time to make myself presentable, I felt worse. While it still felt frivolous to invest in the effort, I sure liked looking in the mirror a lot more. Today I can see caring about my appearance for what it is; a way to boost my confidence, prepare to engage with the world, and remember how far I've come.

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Tuesday, June 3, 2014

Compassion vs. Sympathy

Last fall I changed my life in two major ways. I started juicing vegetables and taking responsibility for the totality of my existence. Since then I've undergone a tremendous metamorphosis. The nutrition fed my body in a way that allowed my Fibro symptoms to settle down. Realizing nobody else was going to fix my exceptionally screwed-up life, nor were they going to live it with me, fueled a responsibility to the quality of that life I was previously too ill to absorb. Slowly the two shifts came together, and I've been able to move forward in ways I was too sick and stuck to accomplish for the last decade. The result is a freedom I never thought I would have again. Yes, I still have Fibro, but my symptoms are so managed I don't live every single moment of every single day caught in its evil, joy-robbing, life-destroying clutches. Thank God.

My journey with chronic illness took me places I never thought I would go. Places I never even knew existed. Places so dark and fraught with panic, anguish and ugliness I didn't think I would survive. The result is a compassion for the suffering in the world I can no longer take for granted. I certainly don't think my life is the hardest life a person ever lived, but I've suffered a plenty, and observe the suffering of others with the clarity and compassion of a kindred soul. Even if that suffering is frivolous, by my standards, I still get it and compassionately respect the journey we each must traverse to prevail. 

Conversely, my sympathy for the suffering of others is practically nil. A person has to have a pretty screwed up existence to garner my sympathy. As sanctimonious as it is to admit, I hold the depth of a person's tragedy up to mine, and only if I deem it worse, do I lend my sympathy. It's a dangerous slippery-slope to subscribe to, but for now, it's were I'm at. Working so incredibly hard just to wake up each day and not be too sick to function jaded me. I no longer feel bad that my life isn't the worse-case scenario. I don't feel responsible for anyone else's tragedy or unhappiness. And ultimately there came a day when I stopped feeling bad that I'm getting my life back. In fact, it's dawning on me right now, that my sympathy became so hard to win when I stopped feeling sorry for myself.

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