Monday, November 17, 2014

The Unpuzzled Flare

After nine years with this illness I'm well aware of what it does to me. It never became clearer than after I got "healthy." Exercise and nutrition got me to a really good place. I was no longer in pain every day, could sleep at night, and didn't feel like I was constantly on the verge of getting a terrible flu. Miraculously, once I didn't feel so awful all the time, living didn't seem like such a bad prospect after all. It took an exceptional amount of work to get there, and even more to stay, but my life started to stabilize. That's when I truly began to understand what Fibromyalgia does to my body.

The symptoms of a flare began to stand out with blaring consistency. Suddenly all those random, strange problems I whined and complained about to doctor after doctor when I first got sick happened in a predictable cycle. At every point before there were so many things wrong with me at any given time I couldn't tell east from west, down from up or white from black. I was just sick. But now I recognized nerve pain in my face, usually accompanied by a boil, and an inability to take a full breath, were the beginning of a flare. Within a few days I would hurt really bad all over, couldn't sleep, and spent my awake hours feeling like I got smacked into by a cement truck. By far the most consuming was what happened to my mood. Raging anxiety, certainty over my own imminent demise, panic over what getting sick at 28 did to my ability to support myself, the selfish behavior of other people, my unhappiness with my sub-par existence, it all became so much bigger than anything else in the whole wide world. I would cry as I rocked my broken body on the floor, wondering why God had forsaken me so, and why I had the misfortune of surviving all my near-death encounters. Life was never bleaker.

Once it would lift I'd run back to my mighty creator with penance and apology for daring to mentally squander my blessings. I would flog myself for my weakness and vow to ignore the evil forces threatening to take over my brain next time it happened. So why, after a year of clearly seeing the flare cycle for what it is, did I indulge it this morning? I knew when I couldn't breath last night a flare was on its way. Going back to work has been hard on my illness/life balance, but I knew it would be a big adjustment. My right mind knows I've done harder for longer, and will ultimately survive. But it's like no matter how much I prepare myself, engage my rational thought, practice mind over matter or simply try to ignore my negative perceptions, they're always so much bigger than me. They pierce my reality, invade my conscious, and leave me an obliterated puddle to sop up off the floor. 

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Friday, November 14, 2014

It's An Instagram World

A couple of my husband's young, hip co-workers informed him of a crucial shift in the "coolness" of social media. Basically, Facebook is dead and Instagram is where it's at. I filed this information in the way back recesses of my brain, and went about my life. The love/hate relationship I hold with Facebook hardly inspired me to invest my time and energy in a whole new facet of internet networking. Then I got bored one night a few weeks back, and decided I wanted to be young, hip and cool. So I started an Instagram account. After a few days of trolling through random pictures and catchy slogans I got it. For a girl who can hardly stand Facebook, and is utterly done with being bitched out for every innocuous comment I had the audacity to post, Instagram is an inherently more positive and rewarding experience. Within a matter of days I was hooked.

I decided not to use this new forum as a way to promote Fibromyalgia awareness or keep up with friends and family, although those are components I'm enjoying. Instead I decided to use Instagram as a tool to discover myself. Or rediscover myself. Or find myself. Or do something with me, exactly what I'm still not sure. The last time I was this preoccupied with myself I was in my late twenties and hadn't gotten sick yet. Then life started bitch-slapping me with epic problems, and everything quickly became about pure survival. I don't know the future but so far, I've survived! But my life's a shattered mess I'm working tirelessly to put back together again. After four years of smearing my failures and heartache all over Facebook, I'm ready to turn over a new leaf. Enter leahtylerthewriter on Instagram. 

Tapping into the younger generation's narcissistic, self-obsessed mindset is kicking me out of my comfort zone. Painfully. Initially I wondered if my life was even interesting enough to bother photographing and posting. Realizing it probably wasn't, and then doing it anyway, has been good for me. It's forcing me to see the beauty in my daily routine. Forcing me to challenge my perception of myself as a reclusive shut in with no life. And it's forcing me to grow. Exponentially. I'm sharing my journey in a totally different way. I'm focused on health, not sickness. It's about what I can do, not what I can't. What I do have, not what I don't. For the first time my Fibro friends and real world relationships are all collected under one account. I've even gotten comfortable with taking a selfie every day and posting it, although it still feels attention-seeking and weird. 

But I know if I want to get my book published and educate the masses about what it's like to live with this wretched illness, I have to get comfortable with self-promotion, as shameless as it may seem right now. I have to get to know myself again, and become comfortable in my own skin. And I need to understand how what I put out there is perceived. So far I've learned I need to cut about four inches off my stringy, raggedy hair I should wash more than once a week, and may or may not have a lazy eye. But in good light my wrinkles don't look as bad, either. So I'm sharing my life. All my conspiracy-theory health-nut practices. How much joy Yorkie and Porkie bring to my days. How sarcasm and being positive are the only way I survive. And I'm trying to answer the question everyone keeps asking me. What exactly did I do to get so much better?

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Thursday, November 6, 2014

Attitude Of Gratitude

A month has passed since I decided to re-vamp my dedication to my health in an effort to boost my immune system. I know this because I'm out of my anti-viral. The pharmacy contacted my doctor in Arizona for a refill, but my MD hasn't responded. Of course I should follow up with an email or call, but I'm not quite sure I want to stay on it. Plus I avoid doctors like the plague and don't want her to know I've moved until I find a new one. I've been better, not perfect, about juicing, and am taking more L-Lysine and immune boosters. I keep waiting for the wonderfully managed Fibro I had in Arizona to find me, but even doing all the aforementioned, it hasn't. Of course it took months to get there in Arizona, and I had no idea I would wind up in such a great place. In this case hindsight is only making me impatient, uptight, and altogether bitchy.

Sometime around 6 AM, three hours after I went to sleep, the switch flipped on inside my head. Oh yea, THIS is why I took the anti-viral! When I finally rolled out of bed around 10 I was grouchy and sore. Taking a walk in the unseasonable 87 degrees should've made me happy. Instead it reminded me I will most likely sit in my house all day like a hermit, and do very little to move my life forward. This reminded me all my problems from Arizona came with me to California, which is a depressing notion. I bargained my way out of contacting my doctor by deciding to double up on my immune boosters. But when I went to go add another bottle to my vitamin order shopping cart, it was backordered and unavailable. Seriously? This is a really big deal! The VICTIM siren started whirling hysterically around my brain. 

Am I forever destined to be live all my days at the mercy of this incurable illness? Why are so many wrenches constantly thrown in my path? I found another online source for EpiCor, at a better price. So I started comparing the rest of my vitamins and supplements. Then I got all mad, because this is a daylong project and I was supposed to be doing yoga, and hadn't had my coffee yet and was out of 1/2 and 1/2, and was hungry and wanted to eat, and remember I woke up grouchy, and... 

Why can't I just be happy? Even with my current tizzy of mindless whining, things have been a lot harder for a lot longer. No, everything isn't perfect, but with my constant need to reclaim as much of my life as possible, it never will be! That's the problem with being me. So I got up, realized how lucky I was to only have to walk half a block to get cream, marveled over how wonderful the sun felt warming my skin, and thanked God all these wrenches give me a chance to do better.

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Thursday, October 30, 2014

A Punch From My Past

Last week kicked my ass. It didn't just kick my ass, it drug it through the mucky sludge of some of my worst PTSD triggers. If getting the flu weren't awful enough, I also started back to work after a four year hiatus. So while I'm lying on the sofa writhing with feverish aches, my inner adult is screaming at me to get myself together. The last thing I wanted was to go back to work on the same note I left. SICK. Like all my other ailments, this flu didn't give a rats woo-ha about my obligations or expectations. It invaded my body to do a job and damn it, it was gonna accomplish that task. My health-nut self knows sending my husband out for fresh vegeatable juice instead of Theraflu is the only reason my misery didn't linger more than a few days. 

By the time Tuesday rolled around I was able to eat, stand without passing out and even leave the house for a little while. I still felt like crap but really, what's new? Except I felt like I was re-living the scariest experience of my life. Four years ago I ignored a raging, splitting headache that had been cracking my skull open for a few days. I mean really, what's new? Like a good girl I got up to go to work and for the 75 millionth time, ignored the way I felt in order to fulfill my obligations. Then another lightening bolt struck my head. It hurt so bad all I could do was scream and claw my face off. Somehow I was able to call my friend to take me to the ER. Two feverish days of medical tests later, the Dean of Neurology confirmed I'd had two strokes. Shortly after I quit my job. 

So last week I sat here stressing and freaking out. Once again I was ignoring the way I felt in order to go to work. How had four years of fantastic progress deposited me back in this awful predicament? I know I could use a couple more months of recoup after that hellacious move, but as a retail gal I can't afford to miss Christmas. So just in case I forgot how awful my past was, how far I've come, or what a true gift being able to return to my job is, I got smacked into a PTSD meltdown of despair, fear and uncertainty. Luckily, after nine years of this crap survival is deeply ingrained inside my every action. Not only did I make it through work, I enjoyed myself immensely. And it only took me another week to feel human again.

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Monday, October 20, 2014

The Flu, Please!

Last night I laid here sicker than sick. So sick all I could do was moan in agony as every single nerve fiber in my body ached. Throbbed. Shot with jolts of an electrical firestorm. The other signs of flu were present, too. I couldn't stand up for more than a minute without passing out. Eating food seemed like the most disguising thing in the entire world, after existing, that is. I was nauseous and bloated and even vomited a little, but not profusely. These symptoms hit me so hard and fast I couldn't tell if I had the good old-fashioned flu, or was it just Fibromyalgia being mean? Or was I dying? I mean I sure felt like it, and every time I turn on the television the news tells me Ebola is on its way to a friendly neighborhood market near me... 

My dear medically traumatized husband, who has been to hell and back with my many maladies, wanted to take me to the ER. I barely had the strength to protest, but informed him if I wasn't already dying of Ebola, a trip to the ER would surely reverse that prognosis. Not only did he think the woman gasping and grunting in agony was going to expel her dying breath, the New York Giants lost too, so he really had nothing going for him last night. Then he got sick. Did we actually have food poisoning? About the only thing I could rule out at this point was Fibromyalgia, because he doesn't have it. 

So we're a sorry lot over here. Having to take the dogs out to pee, and sit on the sidewalk because I was too weak to stand up while they did their business, made me especially compassionate to single parents. How on earth does a person take care of a child by themselves when they are this sick? Since I'm actually sitting up, and can focus both my blurry vision and thoughts enough to write this blog, I guess I can rule out Ebola. I mean I'm not getting sicker, so that's gotta be a good sign, right?

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Tuesday, October 14, 2014

Reassessing Immunity

Four months after a cataclysmic relocation my life is finally stabilizing. Unfortunately, my immune system is still stuck. When I was dodging calamity like hail-balls I understood it, even if I got tantrum-angry over my rekindled suffering for the better part of a few months. But despite my dedicated efforts to maintain the progress I made in managing my Fibro in Phoenix, something's different. A friend with Fibro reminded me this is just how the disease works. Sometimes it takes over. Miss Make My Own Reality over here balked at my friend's perspective, then pondered her experienced words. 

After bucking against her wisdom I remembered why Werner Erhard's est philosophy helped me so much last year. Accepting reality for sanity's sake began my soaring ascent into the most wonderfully managed Fibromyalgia I've experienced in nine years. When I was stuck in the mire these last few months I kept putting a time limit on how long I would allow it to take to get my health back. My dear husband reminded me the only reason I got there at all was because I stopped expecting my chronic illness to behave, and started walking towards the general concept of health, not illness abatement.   

So I'm walking again. Since the root of my Fibromyalgia is a tumultuous tango between an evasive virus and suppressed immune system, I've upped my immune boosters, lysine, and gone back on anti-viral medication. In Arizona I used to buy bagged baby kale from Costco. In California Costco sells a kale, chard and spinach blend. But it's mostly spinach. So I've started juicing with big stalks of flowery kale from the regular grocery. I've also started juicing fresh every other day, not the lazy every three day cycle I'd fallen into. If positive thinking, determination and lots of pep talks factor in, these important changes are working already. 

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Monday, September 29, 2014

Fear Of Engagement

Last weekend I ran into a former coworker at the mall. She relocated from San Francisco to the L.A. area and is working for our previous employer again. It was so wonderful to see a friendly face from my past! Memories of a time when I had a paycheck, friends, and somewhere to be haunted me for the next few days. I realized a large part of me missed my life as a department store makeup girl. I didn't miss working weekends and holidays, standing on my feet for eight hours, or dealing with an often difficult general public. But I do miss having a professional identity and a way to make friends. After not getting a paycheck, of course. 

In the four years since I've worked I've become a recluse. For a long time after my two strokes my brain was fried. Darn near every public encounter left me either confused or in tears. I took a couple classes at the community college. That really helped pull me out of my shell. Engaging with the world, working on a deadline and cultivating relationships forced me to move forward in life. Going back to the gym even exercised my public encounter muscles. But I'm still a recluse, and have to admit I've developed a bit of social awkwardness. So when I got my friend's text, asking if I would ever consider returning to my former profession, I didn't know what to say. Lord knows I need the money. But, like everything else in my life, it all comes back to my health. I've got this outrageously high-maintenance lifestyle in place to manage my Fibro. It takes up a significant amount of my time and without it I get sick again.

So I talked to my friend and inquired about freelance makeup artistry. Then I hung up and freaked out. What am I thinking? I can't do retail! I'm not trying to go back to living on narcotics and tears of pain! I'm a writer now! Albeit unpaid, but I have to finish my book before I can sell it. Am I only considering this opportunity because it's familiar and won't challenge my fear of the unknown? Or do I need to shut my ego up and realize this is this a great way to make ends meet while pursuing my passion? But I haven't even looked into writing employment. Why would I just go backward without trying to move forward first? And the questions keep coming. The doubt and fear and uncertainty scare the dickens out of me. In an all together different way I'm facing a familiar cliff, and just don't know if I should jump.

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Wednesday, September 24, 2014

The Cost

On Friday I skipped the gym for absolutely no reason whatsoever, other than I didn't feel like going. It's the first time I've done that since I started working out six months ago. Naturally, I proceeded to flog myself over my own lack of discipline. Within an hour I became convinced I was going to gain all the weight back I worked so hard to lose. When Shingles pain started throbbing in my face a few hours later, I realized I was actually in a pretty bad flare. That made me remember I've been in a horrible suppressed immune system flare for months now. In fact, I've pretty much been rolling from one flare to another with a mere couple days in between. My weakened state easily overexerts when I'm exercising, and I've taken to injuring some random tendon or ligament or another every time I workout. No wonder I didn't want to go to the gym!

Moving to California knocked the management of my Fibro back to pre-juicing days. A place in time where I couldn't count on myself for jack squat, avoided the nitty gritty of life because I just couldn't cope with reality, and most certainly didn't wake up even close to the same person every morning. I was one sick girl who was rapidly losing the will to keep fighting. This marvelous refresher in Fibro 101 reminded me how hard this illness is to live with, and how difficult it's been to get my life back. The experience helped me find some much-needed compassion my recent flourish of anger forgot was so necessary for survival.

I'm a driven, determined woman on a quest to live a quality life, accomplish my dreams and make a difference. I also happen to share my body with a virus that damaged my central nervous system, hijacked my immune system and generally obliterated my entire life. While said virus won't kill me, it ain't goin' anywhere. We've had to learn to live together, Fibro and I, seeing as we share the same host. While we haven't made peace, per se, I've found a way to keep going by becoming as healthy as I possibly can. But the truth of the matter is sometimes those efforts cost a really painful price.

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Thursday, September 18, 2014

Desperately Seeking Motivation

Hindsight is so golden. I'm sitting here desperately trying to regain the quality of life I worked so hard to achieve in Arizona. It's not working. I'm back to falling asleep after 2 AM and getting up at 11, keep injuring myself at the gym, and am so damn bitchy I'd do anything to get away from me! My discipline is sorely lacking and anger is back to defining the way I spend my days. Sigh. I've already danced this tango, and almost didn't survive it once! It was so much work, but I actually got to a place of ownership in my life, and felt like I had a modicum of control over my circumstances. And then I had to go and move back to California.

Despite the raging heatwave scorching the Southland, and my broken air conditioner, I don't regret the choice to relocate. I just don't know why everything had to go so seriously wrong for months on end. When I start recanting the litany of ills we've endured; movers not showing up, car accidents, broken appliances, flooded dining rooms, a sick dog, termites...and the list goes on and on...people tend to laugh at the absurdity. I wish I was laughing. Any one of those complications are stressful and time consuming. But everything strung together in a consecutive string knocked this Fibro patient over here on her ass. 

I don't know how long it's going to take me to regain my lost ground. When I wake up in the morning I'm mad. Then I remember I used to get up happy and full of purpose, which makes me feel desperate and abandoned. The only good thing is I'm reaching the end of my victim-complaining rope. Endlessly kvetching about my reality is getting old. I want to move forward! I want to contribute to the world's health and well-being, not gnash my teeth and pull my hair because life turned out a lot harder than I ever in a million years imagined possible. I want to succeed and accomplish and inspire our collective consciousness. I want to have a positive impact on my broken, hurting patient population. I want to help the world to understand what living with Fibromyalgia is like, and help Fibromyalgia patients survive the way this horrible illness can wreck a life. I want to do all this and so much more! Maybe simply writing it down, and making myself accountable, can be the first step?

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Tuesday, September 16, 2014

Nothing To Give

My interpersonal relationships have been struggling tremendously since I moved back to my hometown. For two and a half months I've been vacillating between fulfilling expectations and stewing in resentment. The more expectations I meet, the more demands seem to come my way. I knew full well I couldn't keep going at that pace, but didn't know how to relieve myself of the normal, everyday, healthy-human burden of reciprocal relationships. Ahhhh, this is why I don't have friends. I'm not capable of reciprocal relationships! I barely have enough to take care of myself and my husband. Being there for other people isn't even in my lexicon. 

I suppose I should sit everyone down and deliver a dissertation on how my life is different than theirs. Explain that while they are merrily pursuing that inalienable American right called The Pursuit of Happiness, I'm barely hanging on to mere survival. It seems more like seeking approval, though. Laying out my trials and tribulations, listening to bad advice that only makes the advice-giver feel better, inviting judgment of my lifestyle, or strategies on how I can change my circumstances. None of which take into consideration I am a chronic illness patient. And really, Miss Jaded & Bitter over here doesn't expect it to make any difference, so why put myself through the torture?

I'm defeated and broken. Spent and exhausted. Weary to the bone. Sick and tired of being sick and tired. And even more sick and tired of pretending life is okay, when it so profoundly isn't. I can't do it anymore. For whatever reason my journey in life is a tremendous exercise in struggle. So much trauma for so long has severely limited my ability to engage in the experience of living. My life can still be good. I can still achieve success and experience joy just like everyone else. But unlike everyone else I can't do it towing five other people behind me. This lone wolf simply won't survive a pack.

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