Showing posts from December, 2014

My First Sick Christmas

So I’m strolling through Instagram last night, and come across a very young woman who is disabled with ME/CFS. She’s popular, a couple thousand people follow her, and quite open about her struggles with this illness. She got sick after catching a “flu” virus. A year later she isn’t better. I stopped trolling for likes on my juicing post, and immediately started sobbing from the depths of my soul. I know her plight so well I want to scream into the loudest microphone in the world! CFSis what first got me sick. Fibromyalgia wasn’t my initial diagnosis. Chronic Fatigue Syndrome was. And just typing the words makes me wail like a wounded baby. Because if I knew then, nine years ago in my twenties, what I know now, a battered and broken warrior in my late thirties, OH MY GOD, what could I have done to salvage my lost life?????!!!!!! Is there anything I could have done to make the last nine years not happen? Is there anything I could tell this girl, who is so upset to be looking at her firs…

The Exercise Conundrum

For years my doctors told me to exercise. In that "get up off your lazy ass and move already" kind of way. After a while it got silly. Here I was too sick to work, and I was just supposed to breeze through step class like some bored housewife with too much time on her hands? Seeing as I was in too much pain to carry the laundry down three flights of stairs, I ignored such frivolous advice. The pounds packed on, I gained even more weight from going on medications to treat the pain, and then the pain got so bad Vicodin became my breakfast of necessity. I was back to work, but barely, and every other aspect of my life was descending into total chaos. And still, my doctors told me to exercise.
It was blatantly insulting. Clearly they weren't of the same mindset as I, and didn't believe the fire racing through my muscles was real. They didn't get how much it hurt to do something as innocuous as blow dry my hair. They didn't get it, how miserable I felt in the after…

Est, Baby

My brain is a jumbled, churning whirlwind of thoughts and emotions. Fifty urgent tasks ticker-tape through my mind at a frenzied pace. I've got so many different interests pulling on me, it feels like my limbs are being racked on a Medieval torture device. To compound my frustration, all this turmoil only leaves me utterly spent, exhausted, collapsed. I feel like I'm being sucked down, stuck to the earth, unable to get up off the floor. Sick or not, I've gotta get a grip! If I can't catch the whirling ball of my own reality before it crashes to smithereens, nobody will!
So I turned on the Werner Erhard documentary Transformation, about his infamous est seminars from the '70's and '80's. Last year his hard-core philosophy of personal-responsibility, wrapped up in a bunch of insults aimed toward the stupidity of humanity, helped me reign in my out-of-control life. Somewhere between now and then I regressed back to my old patterns of anger, bitterness and a…

Vote For Me, Please!

When I opened my email this morning I almost fell off the sofa. This little blog right here has been nominated by for 2014's Best Health Blog Contest! I've been honored to be named a Top Fibromyalgia Blog by Healthline in the past, but this is bigger. This pits me against ALL health blogs, covering every topic under the rainbow, and there's an actual winner determined by votes. Imagine my surprise when a quick scroll through the competition didn't notice any other Fibro blogs on the list. What a massive opportunity to spread some much-needed awareness! 
I'm so glad I started my little Instagram selfie experiment a month and a half ago. Something told me the need for shameless self-promotion was on the horizon, so I better get comfortable with it. Well here it is! Somehow my exorbitantly-dramatic, perpetually-victimized, emotional basket-case, up-and-down like a zipper, I will prevail at-all-costs depiction of life with this illness caught somebody'…

Searching For A Doc

Seeing as it's almost the end of the year, and I have to get a physical before the calendar flips to 2015 to keep my health insurance discount, I had to break down and find a new doctor. This is one of the most traumatic and difficult topics of my life. One I would prefer to avoid indefinitely, if only I could write my own prescriptions and order my own lab work. With such a ridiculous medical history under my belt, I've pretty much seen it all. Over a decade of near-death encounters and chronic illness has shown me the supreme fallibility of how the practice of medicine is applied to the patient in need. I've been denied care, laughed at, accused of being a junkie, dismissed, called a liar, treated like a hysterical female not worthy of human respect, told my conditions and symptoms aren't real but psychologically manifested, and informed I was the one who needed to figure out how to get myself better. And those are just the ones that stick out in my head. Needless to…

The Tale I Tell

Where do I go, when I feel like this? When I'm on the verge of total crisis, like my life's about to spin out of orbit? When a meltdown of such epic proportions is on the horizon, I'm certain to never return? My book. For the last three horrible, awful years, I've poured all my angst into my book. It provided a fabulous distraction from a life I didn't want to be living. Whenever my reality became too sorrowful or burdensome to bear, I'd escape into a delicious fantasy-land of my imagination. It was easy to focus all my energy on making my characters lives so much worse. Or better. Or sweeter, more vindicated, less pathetic, and at the very least, infinitely more interesting than my lowly existence. I don't think I'd be alive today if I hadn't started writing my book. It started out as the byproduct of this blog. I knew I wanted to shout Fibromyalgia awareness from the rooftops, but I didn't know how to get on the rooftops, let alone get anyone t…

I Meditated

I'm on the verge of cracking up, again. My constant and pervasive anger over pretty much everything is threatening to swallow my life whole, again. The burden of my reality has become too much to bear. Again. Realizing it's only been one year and three months since I sat in the exact same trough does nothing to focus my racing thoughts. In fact, it only grows my panic. Where on earth did I find the power to change my thinking and get my health to a stable place? My memory tells me juicing made me feel a lot better, and accepting reality for reality's sake reigned in my consuming frustration. I'm still juicing, desperate to regain a semblance of an immune system after my absurdly destructive move to California, but I've completely lost my grip on accepting my life.
When my eyes flipped open this morning negative thoughts swirled around my brain. But I just couldn't do it. I couldn't face one more angry walk with the dogs. Another day full of frustrated glance…

Who Believes

In the beginning I just wanted to be believed. I searched high and low for someone to acknowledge I was as sick as I actually was. But nobody knew what to do with me, the girl with some mysterious illness that came and went with the fickleness of the wind. As time passed my life spiraled out of my grasp. Normal activities I took for granted quickly became impossible to accomplish. My social life took the first hit. When the ability to make it to work every day wasn't present, Friday night happy hour became far less relevant. But along with this shift in my activity level went the precious friendships I held so dear. The souls who made those few meaningless hours at a bar the brightest spot in my stressful day. Looking back on this time in my life makes me realize I sat on the sidelines and waved goodbye to the life I once believed would always be mine. 
After a while I needed to be believed. I couldn't cook, do laundry, clean my house, walk my dog or go to work. It didn't t…