Wednesday, April 23, 2014

Challenging My Beliefs

Last weekend was Easter, a Christian holiday that here in the USA, is a supreme mandate to eat a bunch of crap. Sure, we're supposed to eat the chicken eggs colorfully dyed and scattered about the yard, but from my observation, the chocolate eggs got a lot more attention than anything fowl. In fact, I myself showed up at the family feast hungry. So I proceeded to stuff my face with epic amounts of cheesy hors d'oeuvres, cookies and Cadbury mini-eggs, and that was before dinner was even served. My gastronomic indulgence carried on into the main meal, where I targeted the scalloped potatoes and rosemary bread with the focus of a heat-seeking missile. And then there was the coconut cake...

Needless to say, within two seconds of dropping my fork on my empty plate, I felt awful. The feeling only worsened as the day progressed. By the time we were headed home, the only thing on my mind was how badly I needed to down a bucket of kale juice. The healthy cells in my body rebelled against such gluttony with a pain so close to Fibro, it reminded me I have Fibromyalgia! Well, there isn't a thing worse in all the world to me, besides a pancreas attack, which I also felt the mild stirring of. And to think I did all this voluntarily! Considering how hard I work every single day of my life to keep both conditions at bay, I got outrageously pissed off at myself. Not a single thing I ate was worth such an outcome. Perhaps there's a reason I've become such a health nut after all?

It made me want to avoid all holidays, social functions where food is the focus, and engagements that take me away from the cocoon of healthy living that got my Fibro managed. Easter also reminded me how much I've changed. See, I used to eat like the rest of my country. This included a steady diet of high fructose corn syrup, modified food starch, preservatives, aspartame, processed, refined, and sugar-filled foods. Through intense education, trial and error, determination, and last but not least, success, I've come to realize the error of my ways. Now I've flipped so far to the other side something as simple as eating a bunch of junk on Easter sends me deep into Fibro hell. Had I not challenged my own beliefs, along with what my government tells me is true, and what my doctor advises me to do, the misery of last Sunday would still be mine, every single day.

Thanks for joining,

Wednesday, April 16, 2014

Don't React!

Well, my little tantrum yesterday did nothing to serve my interests whatsoever. All reflecting on every problem in my life, at the same time, accomplished was to freak me out. When freaking out and a flare go hand in hand, I literally turn into Chicken Little. After stewing around in that psychosis for a while, it takes so much extra effort to get myself back on track, I want to scream! I thought my progress in this arena was past such blatant regression. What happened to What Is, Is? Sigh. I guess progress isn't perfection.

I have two verses from Psalms tattooed on the inside of my right forearm. It's the two verses I said while chanting my way around my rosary beads for two days in the hospital. The two days between when the doctors told me I had two strokes and was going to die, because they didn't know how to stop more from coming, and when they told me they found the cause, and I was going to live. In my heart of hearts I credit Psalms 23:4 and 118:17 for saving my life so many times since I permanently marked them on my body, it's not even funny. If even just because in my darkest times I would glance at my outstretched arms, shaking a fist at the sky as I cried out 'Why?,' and be reminded that in my most critical hour, I had hope, and faith. If I had it then, why can't I find it now?

Which leads me to the latest mantra I absolutely must adopt, if I want to move forward in life. Don't react! Because every time I do it screws everything up worst than it already is. The simple truth is no matter how unfair or unjust or wrong I may perceive my reality, the only person who is going to fight for my quality of life, is me. So yes, I'm contemplating tattooing the coveted behavior on the inside of my left forearm. But instead of tiny script, this one might be best in big, Old English lettering that the astronauts on the mission to Mars can see from space. I suppose I should ask my husband if he wants to be married to someone who looks like the guy from Memento before I do, though.

Thanks for joining,

Tuesday, April 15, 2014

I Walk The Line

Some days I don't think I will survive this journey. Today is one of those days. Every effort to rebuild my life seems but a weak, cheap attempt to fool myself into believing things can be different. An endeavor to convince myself I have a modicum of control over my reality. A desperate call to somehow keep putting one foot in front of the other, when really it's pointless, because the tightrope I'm traversing just snapped. What cold, painful reality tells me is there's too much water under the bridge to move forward. Because it's not just water, it's swamp sewage sludge up to my neck I have to not only wade through without getting sucked down, but somehow figure out how to lift myself out of, as well. 

So much pain sits in my past. My reality is a precarious joke. It feels like I spent so much time ignoring the fundamentals of life, because they were so screwed up I couldn't even comprehend them, that the damage to my existence is already done. Most days I am not content to sit by and watch what little I have left slide into the rabbit hole of oblivion. But today I feel like railing against it doesn't do a damn bit of good. Accepting the inevitable seems a much better option. Although, however inspired I may feel to jump off a tall building, given my track record, I probably wouldn't even do that correctly.

Perhaps the most daunting awareness I've come to accept is that sometimes, life doesn't work out. Good things don't come to those who wait, everything doesn't happen for a reason and God certainly gives a person more than they can handle. I don't know how to move forward with no assurances! My entitled, middle class upbringing didn't prepare me for such a harsh world. I look around at my life and have no clue how I got here. So here I sit; bitter, angry, confused, bewildered, insecure and still, somehow, walking on that tightrope that just snapped.

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Wednesday, April 9, 2014

Some Accurate Representation

Dear Pfizer,

Last night one of your commercials for Lyrica came on TV. In this ad a woman claimed her overactive nerves, caused by Fibromyalgia, gave her pain and kept her from doing the things she wanted to do in life. Obviously she went on to tout the praises of your drug, but I wasn't listening. Instead, I was hung-up, obsessing, and ranting and raving over the use of one word, wanted. Fibromyalgia kept her from doing the things she wanted to do in life? Like rock climbing or going to an Eminem concert? Because this Fibromyalgia patient over here experienced a completely different reality. Not only did Fibromyalgia keep me from doing the things I wanted to do, it also kept me from doing the things I had to do, like washing my hair and going to work. And I know a hell of a lot more patients sing my song than Miss Wanted To Do's. 

Needless to say, as a nine year veteran of Fibromyalgia, I found this phrasing offensive. In short, here's my beef; You're $opping up the dough off a disease that isn't technically a disease, because nobody knows what causes it. So it wouldn't hurt too much to throw us patients a bone, would it? Because we're in a pickle and sure could use your help. Not only is Fibromyalgia the leading pain condition diagnosed in the USA, patient symptoms run the gamut, with a range of fluctuating severity. It affects everyone differently, and to make it even more convoluted, the treatments do, too. Please understand I am an educated consumer. In no way am I holding any pharmaceutical company responsible for sourcing the cause and cure of this mysterious ailment. And I'm well aware of how expensive the process of developing a drug, testing it, and bring it it to market actually is. I'm even hip to the efforts your company invests in regarding Fibromyalgia awareness and cause advancement. But maybe it's because of these reasons I'm actually pissed at you.

I know you pay a pretty premium for the advertising, but as of right now, Pfizer, you are the voice of our illness. Countless patients have lost their ability to function from Fibromyalgia, along with their jobs, families, friends and homes. Fibromyalgia is a devastating reality hotly debated in the crossroads of modern and psychiatric medicine, yet nobody can deny the number of patients is only growing larger. As the only other source of the word "Fibromyalgia" to many people in our society, other than 'strange Aunt Sally who doesn't like to leave her house', you would do the aforementioned injustice a world of good if the chick on the Lyrica commercial said had. 'Fibromyalgia kept me from doing the things I had to do in life.' It would give millions of people some much needed validation.

Thank you for your consideration,
Leah Tyler      

Monday, April 7, 2014

The Habit Of Good Intention

Habits become habits because after a being does something a certain way for a certain while, the brain forms communication synapses to make doing it that way easier. It's a wonderful function of adaptation, unless of course a person is trying to break a bad habit, like quitting smoking or not avoiding their life anymore because reality bites. In those cases, the brain seemingly urges itself to continue partaking of said bad behavior. I've found trying to talk the brain out of doing what the brain wants to do can be an utterly maddening experience.

I'm trying with all my might to actively change my evil ways. After so many years of feeling so awful, and trying to do anything about it making me so crazy, I developed deep neural pathways of avoidance. It was so much easier to get lost in the fiction book I'm writing, than deal with pain in my body so bad it annihilated my entire life. Unfortunately, this coping mechanism ensured that the day I actually did look at my life objectively in the mirror, I hated what I saw. As I struggled to understand my health and what kind of quality I could expect, all I wanted to do was bury my head in the sand and run away screaming, "Change is too hard!" Because really, it was. And still is.

It is extremely important to me to chronicle this phase of my recovery. For so long I kept quiet, believing what I had to say was either too boring, controversial or revealing of my inner person. But I cannot achieve life if fear controls me. And I've found other things have become important to me lately, too. Things like making the bed and putting on makeup. Little things so common and inconsequential to life they became extravagant luxuries when I was oh so sick. Now, I find myself in a position to regain a slim semblance of normalcy, and it feels incredible. However, if I keep ignoring my life and burying my head in the sand of avoidance-land, those things never get done. So I will continue to address my myriad issues by doing, over and over again, the good habits that net me the results I want. Let's just hope one day soon my brain gets the memo.  

Thanks for joining,

Wednesday, April 2, 2014

My Quiet Life

When I reached my tipping point last August I was a bona fide mess. In order to survive I had to pull it together and figure out this ridiculous existence I found myself living. The first thing I did was halt all communication with the outside world. I didn't realize it at the time, but my complicated external relationships were directly impeding my ability to care for myself. At first the silence was painful. I was outrageously angry that engaging with the people I knew was so damaging to my self-worth, I simply couldn't do it. How, after everything I've been through, was I still nothing more than a pawn in everybody else's manipulative dramas? 

As the quiet spread through my psyche I redirected, squashed, yelled at and ignored that anger. Simply indulging it was too painful. Replacing my mental negativity with positive thoughts was the only thing that kept me from spiraling into a full-on meltdown. Plenty of tantrums slipped through the cracks of my new foundation, but I kept at it, and eventually gained a little perspective. It was a shocking moment when I realized I could take care of myself, I could own my problems and find ways to make my life better, I could be there for my husband and honor the commitment I'd made to live my life by his side. But that was it. 

I will never be who so many people want me to be. They will not understand my choices or reality, and I don't really care. Instead of beating my head on the same spot against the same wall for the rest of my life, accepting both my reality and other people's right to be who they are, set me free. But I didn't pick up the phone or start engaging again. Clearly I don't know how in a way that doesn't damage me. So here I sit, quietly, living a life I own and am actively improving. Reciprocal relationships aren't something I can do right now. More than a few people can honestly say if you're in a bind, I am not the girl to call. Of course this also means I don't have anyone to call in an emergency, either. Life is nothing if not a two-way street. However, am I the only one who finds it funny how I don't have nearly as many crises when I'm not reeling from one stinging insult or failed attempt to meet expectations after another? In a way, I divorced the presumptions placed on my life. They still exist, they're still out there just waiting to pounce and reclaim me, but finally after eight months they don't control me.

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Tuesday, April 1, 2014

A Bigger Baby Step

This morning I did something I haven't done in ages, I went to the gym. The ability and desire have been percolating inside me for a while now. When I found myself filling a bag with bottled water in order to do bicep curls at home, I knew the time had come to pick up the torch of something taken from me many years ago. Of course it still took me a couple more months to actually get myself together enough to walk in the door, but today I did.

Although it was a gym I'd never been to before, I decided to skip the tour and generic personal training session and jump in with both feet, all on my own. After all, I weight trained for years before I got sick, and even some years after Fibro set in. It's like riding a bike or having sex, right? You don't really forget how... When I couldn't even find the women's locker room I felt stupid. After asking for directions at the front desk, and still not being able to find the locker room, I felt even stupider. As I circled the space like a vulture searching for a decomposing carcass, all I saw were these really buff people doing all this really intense working-out stuff. I felt like an alien. Certainly everyone was staring at me, laughing and wondering why a thirty-something year old woman looked so lost and scared staring at a barbell. I even went so far as venturing back past that front desk to head towards home. I was intimidated and out of my element. Just walking in the door is progress, right? 

Chickening out was something I did for a long time. I needed the baby steps to rebuild my confidence, to regain my faith in my ability to engage with the outside world. But I decided today, at about the same time I remembered I didn't care what one single person in that gym thought of me, that particular time has passed. Before I made it out the door something rose up inside, and I decided to get over myself. Forgetting about the stupid locker room I couldn't find anyway, I made my way to a bench, pushed play on my headphones and set to work. I was rusty, didn't know what weight to use half the time, and knew my form was nothing short of comical, but somehow I got through it. Now I sit here feeling fluish, wondering what sort of toxic disease junk working-out released into my system, and can already tell how sore I'm going to be from the exercise itself. But I'm also overwhelmingly proud of myself. Because after I was done exercising I miraculously stumbled upon the locker room, walked inside and stepped on the scale. Nobody was more shocked than I to discover, from the height of my obesity after a terrifying tango with high-dose steroids, so much sickness and a slew of Fibro drugs, I've lost 80 lbs.

Thanks for joining,