Thursday, December 27, 2012

Reflection Of Progress

When I started this blog I had just been through living hell. Four pancreas attacks were behind me. CFS/ME had been pinned down as a very real virus that infected my central nervous system and severely eroded the integrated systems of my body. While not "gone" (viruses don't leave) that too was treated and managed and I had resumed a quality of life previously unattainable. Meaning I could work part time and somewhat function as a contributing member of society. Fibromyalgia was not behind me, per say, but I had jumped off the merry-go-round of intense pharmaceuticals and their life altering side effects and found a better way to manage it. Everything I'd been forced to learn through my years of illness started making sense. I experienced the awesome power of the human body's ability to heal itself through the fruits of holistic principles. No, I hadn't abandoned modern medicine, but instead utilized its slim offerings in conjunction with myriad other ways to get back to livin'.

I sat down at my computer one spring day in 2010 and, having never even read one, started a blog. Figured I knew a thing or two about how to survive this monster called Fibromyalgia and thought it would be an excellent way to practice and improve upon my writing skills. I'd set my sights on starting my graduate degree in English Literature and knew I needed the practice. So I wrote. It was like a journal. Sure it was technically published on the world wide web, but if nobody knew about it how on earth were they to find it? I certainly didn't have the guts to actually tell anyone about it. However I believed the worst was behind me and it is from that point of view I focused my perspective, as a survivor. But how does one know the worst is behind them when they haven't lived the future? Because by the time summer was nearing its end I'd gone and had two strokes, severely life threatening ones I barely survived by the hair on my chinie chin chin. And that's when life went real bad. 

The first six months on high dose steroids were easy, in retrospect. I got those guts I didn't previously possess and shouted my blog from the rooftops. I became enraptured with the cause, devastated by each personal story I heard of how horrifically detrimental Fibromyalgia can be to a life. Sweeping urgency consumed me. I had to do something about this and I had to do it now! The state of affairs was in shambles, patients were terribly mistreated, a clear and absolute voice on how we were going to change things didn't seem to exist. Feverishly I blogged and started an awareness campaign and Facebook page and became full of frenzied certainty I was going to be the one to turn this very big problem on its head. And then I got off steroids and discovered I was actually a hot mess of the worst proportions. I'd gained 40 lbs. Fibromyalgia pain consumed me like when it had previously disabled me. My cognitive abilities were screwed up. I possessed absolutely no stress response and would melt into a puddle of jello if someone so much as gave me a dirty look. I couldn't problem solve or think quick in a fast situation. I couldn't even do two things at the same time, like walking and talking, for crying out loud. Like I said, it was bad.

So bad, in fact, I will assign the last two years as the worst of my life. More than a few times I didn't think I was going to survive. But through the grace of God I did. One step at a time, one day at a time, one challenge at a time. All the while I tried hard to stay true to those holistic principles which helped me reclaim health once before. It was with great challenge I attempted to maintain my voice as a Fibromyalgia survivor when my own personal walls were caving in around me. Sometimes I could and sometimes I couldn't. But if there is one certainty in life it is that time moves forward, and slowly I found my footing again. I started jogging and dropping weight. I stopped reacting to every bit of strife with epic meltdowns. I remembered how to roll stuff off my back, not freak out about what I couldn't control and put my energy into things which yielded goodness. I didn't so much wake up one day and everything was better. No, not at all. But I did pause one day not too long ago and look back to see a lot had improved. So I kept going. I reduced some medications, started keeping up the house a bit more and began counting on myself again. I took a creative writing class and got some great feedback on the novel I am penning. Checking my messages and answering the phone were no longer fear gripping activities. I wasn't burdened with the sheer weight of my own existence anymore, I was actually living my life. Not the life I lived before all these health problems took over, but one where I discovered there still is a lot to smile about.

This blog has ridden every wave of my journey with me. High and low, ecstasy and agony, good and bad, laughter and heartache, it is all here. Raw and imperfect, as I myself so certainly am. I'm not the superwoman who started The Fibromyalgia Crusade. My lofty ambitions have fallen very short. But in redefining life so it works for me I've had to reassess my commitment and discovered nothing has changed. My heart still beats to see a world where Fibromyalgia patients are not blamed for their illness, treated like it is an optional condition they are too weak to push through. My efforts still very strongly promote this cause, but are far more conservative and reflect what this one woman show can actually do. I am honored to have shared my experiences with those who have searched for ways to cope and found me. Without this blog, without you readers, without the anchor of responsibility as not the, but a voice of this illness, I don't believe I would be standing where I am today.

Thanks for joining,

Friday, December 21, 2012

Sleep, Where Are You?

Here I lay, trying to sleep. I've counted all the sheep in the pasture, backwards from 100, an entire rosary and mentally landscaped the backyard of my dreams. It's very pretty, with fountains and rose gardens and organic vegetable patches, and lots of green grass for the pups to get their jollies on. But alas, my brain just won't shut down. I almost dozed off once, but I didn't. I even pretended my husband's snoring was ocean waves crashing into the shore. I attempted to meditate and it made my brain hurt, trying to think of nothing. I came out to the sofa, theorizing I was putting too much pressure on myself and needed a change of venue. Nope, no sleep. The longer this goes on the more hyper I get. The more frustrated and uptight and bent out of shape. Which does sorry little to help me sleep. 

No, by the time six hours had past I was worked into quite a tizzy. I saw tomorrow flash before my eyes. Headache, bitchy, exhausted, miserable. Then I started in on the victim dance, not wanting to have a headache or be bitchy, exhausted and miserable. I've got quite a bit to do tomorrow! Which is today, but doesn't feel like it, because I've been awake for so freakin' long. The victim dance conjures the bitterness dragon, because shortly after that I got all mad at my life in general. The way my under eye bags look packed for a month in Europe after a night like this. The terrible memory of how quickly these ramped up central nervous system induced nights of insomnia would take me down when I was working. And then I stopped and got a grip.

I will survive tonight. Chances are, as soon as that globe of fire we here in Arizona call the sun peaks it's early tentacles into the night sky I will be out like a light. Or if not today, I will this evening. All the important stuff that must get done most likely will, or it won't, and that too I will survive. If I stopped crying in victimized frustration it would help minimize that under eye puffiness I think makes me look so old. And if I remember I am not a victim, but a victor who faced a frustrating setback in a way that could use improvement, it would make it easier to not be so hard on me. I tell myself these things and think I'm calming down, relaxing my tense muscles and wigged out mentality. Oh me oh my, could it be? I think I just might be getting drowsy...

Thanks for joining,

Thursday, December 13, 2012

I Want Their Life

My husband and I were sitting outside the coffee shop with our puppies last weekend when a man came strolling by with his three children. He was a pleasant looking fellow I guesstimated to be about 50-something. The children looked six and under, with one in a stroller. I thought to myself how nice this picture of healthy and normal Americana looked. I imagined mom was at home resting and her dutiful husband had taken the children off her hands for the morning so she could have some much needed "me" time. Boy was I ever wrong! Mama walked out of the coffee shop a few seconds later and when she joined up with them I was quite surprised, to say the least. She was young and hot! Looked younger than me with a phenomenal body, muscles rippling under skin-tight yoga gear with a caboose that would not quit. I looked at my husband and said "Boy, I sure didn't expect that one!" He agreed and diplomatically commented she looked like she took good care of herself. When I pointed out her perfectly round derriere he reminded me she worked hard for her figure. I sipped my coffee and wondered off into dreamland for a few moments as The Cleavers piled into their Porsche Cayenne. It was easy to surmise the charmed and privileged life this perfect looking family must have. I ain't gonna lie, I coveted. It looked so normal, so picturesque, so enviable. 

Now I know I was presuming a lot, and it's silly to think they don't have plenty of their own issues. I mean how many episodes of Real Housewives does Bravo have to make to tell us nice things don't make happy people? But the irony of appearances was not lost on me. Isn't this a topic I am always bitching about, how frustrating silent illness is? That because Fibro doesn't exhibit external signs and symptoms the patients have to fight extra hard to be taken seriously? People assume a normal looking individual is healthy, and it's not unreasonable for them to do so. But there I was, I'd just gone and done the same thing I frequently get all hot and bothered about. I assumed because their life looked charmed, it was charmed. The judged had become the judger.  

I am still marching toward that bubble gum life. One of rainbows and unicorns and happily ever after. I don't want any more pain or to struggle and have issues and grief. I want them all to just go away, to have never existed! That is the girl in me. The woman in me knows that with the anguish would also go the knowledge in my head, the compassion in my heart and the drive and determination in my soul. There is something that comes from struggling in life, a depth of spirit that manifests itself deep within the soul and breeds a strength of character, a sense of self, a cause of purpose. So I must strike a balance. Strive for health and freedom from illness but also remember how far I've come. Keep my perspective so the bad days don't take me down any further than they have to, and work toward the good days to far outweigh them. So while I may look at that family and assume life is peachy keen and easy for them, there is no guarantee someone is not looking at me with my outrageously adorable puppies and devilishly handsome husband and assuming the exact same thing about my life.

Thanks for joining,

Friday, December 7, 2012

Not A "One Size Fits All" Holiday

The season of giving is upon us. But it can be hard to give when one doesn't have enough of their own. Be it time, money, health or energy, a deficit is a deficit. It's quite a controversial practice to keep doling out more than one is taking in. Defies logic, even. Yet many people will tout the benefits of giving over receiving. Feelings of serendipity bloom in me when I am able to give freely and without concern for reciprocity. But for so many years I couldn't even get myself up and to work every day without catastrophic weekend meltdowns. If money hadn't been an issue, time and health were surely standing firmly in my way. I miss the joy of giving, of not stressing over my own survival, of engaging in the give and take of life's relationships. All things I am working so hard to get back from this nasty illness.

I remember the years of CFS/ME when setting the table and opening a bottle of wine was the sum of all I could do. How to communicate that to healthy people, that I'm not just sitting here staring into space slack jawed for fun? It's because a battle was being waged between my body and mind inside me? Quite frankly I couldn't believe my reality. I know I wouldn't be able to comprehend it if I hadn't experienced it first hand. Like many things in life I don't know if a person truly can. 

What Fibromyalgia has forced me to do is step out of the madness of frantic shopping and frenzied wrapping. Of blowing credit card limits to get that oh so perfect gift for every person on my list. I haven't sent cards in years because quite frankly, I really didn't have anything positive to say. I was sick and my life was coming apart. And I couldn't afford the postage. No, for the last five years I had to sidestep the usual holiday beehive because I was in a huge deficit. What's funny is I discovered by refocusing my efforts there is still plenty to enjoy. Spending time with family and the excited snap in the December air. Whipped up egg nog and the soft glow of a twinkling tree. The little children at church acting out the Christmas story. Chanting, "You'll shoot your eye out!" along with the TV like we have every year since 1983. I've come to realize giving doesn't have to be nearly as exhaustive. There aren't as many people on my list, I don't get as many cards in the mail and there aren't as many gifts under my tree. But that was the life I got sick in. This one is much smaller, and suits me far better. 

Thanks for joining,

Tuesday, December 4, 2012

Your Child Is Schizophrenic

A neurological disorder of unknown origin, known today as Autism Spectrum Disorder, was at one time classified as Childhood Schizophrenia. This was during the early days of framing the condition in our modern medical system and all sorts of rumors abound. We now know it is not caused from a frigid mother or bad parenting. It's pretty common knowledge a person on the spectrum does indeed have feelings and is able to form relationships with other people, as unique as those relationships can often be. And undoubtedly some autistic people can't speak, while some can and not all are savant, but some are. While modern medicine hasn't unlocked the puzzle of what makes autism occur, tremendous advancements have been made in treatment options and public awareness. Lots of folks recognize the colorful ribbon with a million little puzzle pieces unique to the spectrum, even those with no direct relationship to the condition. All this progress serves to insure autism is no longer recognized as a mental illness but instead the complicated neurodevelopmental disorder it actually is.

My little brother is autistic and I watched my parents struggle through quite a fight to raise their son. Their battle was not only in managing an angry and confused little boy with overly sensitive sensory abnormalities and disconnections, but in fighting the world at large to understand and accept who their child was, what was wrong with him and where he fit into society. I am thrilled he has grown into quite a self-sufficient young man who now lives in his own apartment, holds down a part-time job and is on a relentless quest to find the love of his life. He is successfully independent today because of the heart and soul my parents poured into him, pushing and fighting for his progress every step of the way. I was at the coffee shop the other day when a family came in. Their young son was a bit wild and making a distinct moaning/yawning sound I recognized right off the bat. The barista leaned over the counter and asked the parents if their child was autistic, for he too had an autistic son, and they started a lively conversation sharing their experiences. Wow has awareness come a long way from the dirty looks and angry stares my family used to get back in the early '90's!

As a Fibromyalgia patient I can't help but draw some parallels here. I often find myself in a similar double dual. Fighting to squeeze the best life I can out of myself while railing against the ignorance, misnomers and lack of public awareness this illness is entrenched in. Searching to find my niche in society where I can be productive, successful and happy. It's a challenge, but like my parents before me I believe the fight for public awareness and acceptance of this illness is my responsibility, for it is my reality. I cannot wait around for science to figure out what causes it or medicine to discover a way to cure it. It's taking too long! Hell, they are still searching for a test to definitively prove we even have it. Autism is still waiting for these advancements as well, but out of sheer necessity the community has banded together and their voice has been heard, recognized and respected. By joining efforts we are following the trail blazed by those before us. Folks who have fought tooth and nail to bring awareness to something evading definition, an illness as confusing to the patients who have it as those who don't. We are not alone in this charge, and are getting there slowly but surely, inch by inch. Each person's effort to raise awareness, better their life or improve their circumstances, that is what is going to turn Fibromyalgia into a "They used to think it was..." illnesses too. 

Thanks for joining,

Monday, November 26, 2012

Dear Fibromyalgia,

Oh you nasty little bugger. You've changed my life in so many ways since we met in 2005. In fact, very few relationships have impacted me as quickly and completely as the one I have with you. While I've been certain you were going to take me down more times than I can count, somehow I find myself sitting here today stronger than you. Much stronger. I've changed in a lot of other ways too. Patience, compassion and courage have taken on new meaning in my life. Empathy and acceptance as well. Gratitude for things great and small replaces oodles of entitled expectation. Usually. And my understanding of this world, how it works and the place I fit into it has been revolutionized beyond my wildest imagination. 

But it has taken me so much to get here. Insurmountable challenges I never though I would overcome. Grief, despair and heartache so grand I didn't believe there was anything else in this world I would ever feel. Except for the pain. Oh that pain. I try to describe you, but the words I can find are like taking a piece of broken glass and telling someone to see the brilliance of a cut diamond. Pathetically inadequate.

People used to tell me I was creative, but the creativity you forced me to create, well it's astounding! How to see good in bad, happy in sad, satisfaction in want and satiation in neglect. The art of taking a challenge and turning it into an opportunity to do better. Realizing there is no longer a heartbeat in yesterday, and it still has yet to find tomorrow. There is only one place life exists, the beating pulse of today. Because learning how to accept you is how I recovered much of what you've cost me. For all that you have taken, there is so much more that I've gained.

Thanks for joining,

Monday, November 19, 2012

A New Leaf

Ever since I admitted some hard core truths to myself and set about to stop living with guilt boulders burdening both shoulders I have been feeling loads better. It's amazing how many things there are to get stressed about in life. It's even more amazing to realize I don't have to feel responsible for fixing every single one of them. It's not like I could anyway, but the expectation was sending me, via a very expensive one way ticket, on a slow boat to crazy. This paradigm shift has been huge, and not just for me but my entire household. I am present. I am productive. I am happy. And I've been physically feeling pretty darn good too. This means things are getting done. Instead of sitting around feeling awful because my life is my life I am actually living my life. The more I do this the more my previous years of misery start to make sense. It's positively astounding how many little things I was unwittingly allowing to disturb my progress to health. 

Sadly my latest lilac run once again came to an end. I woke up Friday morning crying. So sore, I felt like I'd slept on a pillow of rocks, if you could even call it sleep. There was a burning coal of fire sitting on top of my right shoulder. Nerve pain zipped up and down my right side and the mass of my cells felt too big to fit in my skin. Every inch ached and throbbed. Initially I got mad, then I calmed down and realized I had an opportunity to change some patterns here, the way I react to a flare. Using my three questions that got me to lilac in the first place I assessed the situation. 1) Do I deserve this pain? No, I didn't do anything to warrant such punishment. So I set my immediate goal to work towards feeling better. 2) Is there anything I can do about it? Yes, I can work towards feeling better by taking care of myself. In the past I would flog myself for about a day for getting the flare in the first place, only serving to exacerbate it, which really makes absolutely no sense at all. This time I was determined to be different. Because number three is the kicker. 3) Can I calmly and rationally set about trying to feel better, from something I didn't inflict purposefully and maliciously on myself, by taking care of myself without feeling guilty? And that, my friends, was the million dollar question.

Somehow I was actually able to pull it off. I guess you can teach an old dog new tricks after all! But the next best came on Saturday. My husband and I are driving to Costco and I feel awful. He starts to set about all the ways he knows how to try and "fix" me. I know this illness is as frustrating for him as it is for me but didn't realize we have our own pattern of how we deal with a flare as a couple. But on Saturday I saw it, clear as Christmas on December 25th. So I took his hand in mine and said, "Lookit, I am sick. You can't change that right now and I can't either. But we can stop the madness we have been existing in. I feel like crap, I just do. If I get bitchy tell me and I will reign it in, but it is what it is. This is life. So let's break the cycle of me feeling guilty and you trying to fix it. It's wasted energy. Let's just go to Costco!" And the best thing of all, what I am so excited to report, is we actually did. 

Thanks for joining,

Wednesday, November 14, 2012

Onward We Go

For many Fibromyalgia patients this illness is not the only one we face, and there are many other aspects to every person's life besides health. There is love and family and feelings and survival. Watching life inflict it's brutal blows on those we hold near and dear. Struggling to find a way to support our own, prosper and enjoy some of the goodness of all things great and small the progress of humanity has gifted us with. There are choices to be made and even when choosing right, are often consequences to be paid. Balancing what was, is, can be and will be is a challenge all its own. No, the human condition is not small. It is rich with complexities and plenty of things that happen we have no control over. Fine and dandy when life goes right, but far too many times we are left standing amid destruction asking, "Why me?"

Who in the world knows? We don't have knowledge of the absolute. What we have is faith and beliefs and science and traditions, ways to explain the reason the human animal roams the earth in all of our infinite superiority. Bad things happen to good people, and sometimes they don't just happen, they keep happening again and again until what should be a strong and capable individual is beat down and ready to fold. But we are nothing if not resilient! The instinct to stay alive keeps many keepin' on, often well past the logical point of no return. But the battered and bruised bottom is a very hard place to climb out of, especially when one keeps landing there again and again and again. What to do with the devastation, pain, heartache and bitterness? Is it all for naught?

On my good days I say no, my trials have shaped me. I am who I am because of what I have withstood, and will continue to grow into who I am meant to be through each new challenge. Not that what went so terribly wrong is good, but it can still be used for good. I am far less generous on my bad days. Sometimes those days can seep into weeks and months and even years, and before I know it I've forgotten how to smile. Life has lost it's luster, become a chore, no better than something to endure. The only way I know how to survive those times is not to pretend they don't happen, because they do. It is not to prophesy they won't come again, because they might. But in admitting my weakness I can find my strength, by confessing I can't bear my burden alone I can find my faith, and hopefully the glimmer of a better tomorrow. Clinging to the belief that under the thorny path I stumble lies my yellow brick road. Life can be unpredictable, unforgiving, often painful and for the fortunate it is long. And only going in one direction, forward.

Thanks for joining,

Thursday, November 8, 2012

The Blame Game really lame. But for the longest time I couldn't help it, really I couldn't. I've been trying to shed massive boulders of guilt for years now, to no avail. Guilt I got sick, guilt I kept getting sick, guilt because I can't work and my husband carries the entirety of our financial situation on his shoulders. Guilt I can't be who I was with my family, guilt because the reality of my illnesses has cost my husband his, guilt I'm not who I am supposed to, or more realistically, expected to be. Guilt guilt guilt guilt guilt! So much damn guilt. I started to feel like I was the bearer of nothing but profound disappointment. It's made me more than a little crazy. The reality of what repetitive and severe illness does to a person is tragic. How each individual finds the strength to overcome an onslaught of tidal waves that keep wiping out their life is truly a miracle. I searched for that strength. Some days I could find it but more often than not I couldn't and lay weeping under the pile of stress and misery and disappointment my life had become. Oh the mournful wailing of regret!

But I have a lot to live for and believe I can do better, so I kept trying. I guess something happened recently that served to effectively shatter this mountain of oppression I was living under. I'm not quite sure what it was, though. Because one day I woke up and looked around objectively and decided I didn't want this life anymore. Not the life with chronic illness, I've known since it started I didn't want that. But the life my crazy guilt cycle kept me chained in, that's the one I felt I just might be able to do something about. My first realization was how stupid a very prevalent behavior pattern is. See the second I'm not hacking on flare's dark door I fling myself back into the expectations of others to "make up" for how awful their lives must have been without me. Today that seems self-absorbed and useless, but it's something I did for many years. And of course that would push me right back into the flare, and around the mulberry bush we go! But one day not too long past I couldn't figure out for the life of me why I didn't deserve to feel good? The people I was inflicting this grand disappointment on are not sick. They feel good all the time. Yet I take the little precious bit of lilac I fight so hard for and fling it at their feet, all but begging them to crush it under their dancing shoes.

Maybe that was the first step, to put my needs ahead of other's expectations. Perhaps that is what made me wake up on a different morning and decide to stop giving my energy and stress to things I can't do anything about. It was only serving to oppress my present. So I consciously redirected my thought patterns. When I would feel helpless or mad about stuff from before I'd remind myself the only thing worrying did was make me crazy now. Then I'd go give the dogs a bath or catch up on General Hospital, depending on my pain and energy for the day. Lo and behold after a few weeks of this I started rolling those negative feelings of victimhood off my back without even realizing it. My present was actually a nice place to be and I wasn't giving it away for anything! 

But what happened next is the big one. See I was no longer giving away my lilacs to the first person who wanted something from me, and I wasn't stressing about things I can't control, and before I knew it that monster monkey on my back, that gazillion pound ape of guilt I was hauling around with me everywhere I went, well I got the strength to turn around real fast, strangle it and leave it there to die in the middle of the room. I no longer felt guilty for being sick, disappointing, burdensome or basically just existing, as I did for so many years. I found peace through a new realization and felt a freedom and lightness I don't know if I'd ever had. It is this place I keep returning when my habits from the past threaten to sneak in and steal my joy, and boy do they ever. But I am a big girl and my life is my responsibility, I take it and own it with pride. And the other adults I know, well their life and happiness is their responsibility to find and create for themselves too, certainly not mine. 

Thanks for joining,

Sunday, November 4, 2012

Is This JUST Fibromyalgia, Or Am I Dying?

This last week I spent four days lilac. It was marvelous, glorious, wonderful. Beyond comprehension. The world was my oyster and there was no problem too big for me to handle. In contrast, my chronically healthy husband had the respiratory flu. So he sat here hacking away and bitching and moaning and blowing his nose as I experienced the joy of each moment like it was a gift of from the gods of health. Sure made me realize what a drag I must be to hang out with when I am whiny and feeling sorry for myself. It also renewed my acute memory of what hell this illness really is. I'd forgotten how good feeling good felt! Never one to look a gift horse in the mouth I refused, absolutely positively refused, to live anywhere except in the present tense of each pale purple moment. They don't come often enough to squander. My seasoned habits and cranial neuropathways kept trying to drag me back to the misery of the past or fear of the future. It's where I spend most of my time. But I felt so darn good I absolutely refused to live anywhere but in the heartbeat of the moment and over the course of the four days whenever my mind would wander kept dragging myself back to the present. 

On the morning of the fifth day I woke up curious, as I had the previous four, becoming increasingly more hopeful with each passing day Fibromyalgia just spontaneously went and cured itself for some who knows why reason. But my neck was sore and stiff, it felt like there was something on it, like a big pocket of air under the deepest layers of my dermis. Of course there was nothing there when I reached back and touched it. The very mild stirrings of a headache were starting to rise. I bargained with myself to ignore these symptoms, chalking them up to a psychosomatic fear of Fibromyalgia. Or I was getting the respiratory flu from my husband. Either way I was not ready to give up my string of lilacs, no not at all, let alone the possibility Fibro might come rushing horribly back. 

But, alas, seeing as this illness is NOT an imagined up psychiatric response to stress and depression, mind over matter did not prevail. Slowly but surely, bit by bit, over the course of the day my usual state of being, the one where I have that illness called Fibromyalgia, came back to me. By the end of the night I could barely move my neck. It was swollen and tender to the lightest touch. I had a terrible headache radiating up my skull and into the frontal lobe and felt shaky, nauseous and like I was getting the flu. Smack me across the face, it hit me! One reason this illness is so damn terrible is because one of four possible things were happening to me, but I had no way to tell which one it was. 1) Fibromyalgia was coming back or flaring. 2) I was getting the respiratory flu. 3) I laid on my neck funny the day before at the pool and it was strained or twisted. 4) I was having hemorrhagic strokes again. Two years ago I had two. Directly proceeding an intense feeling of "well being" and manic behavior and a thunderclap headache. So while my behavior this past week didn't fit the textbook definition of Cerebral Vasculitius RCVS, the condition which caused my strokes, there were enough parallels to cause alarm. 

Really? I may be mid stroke and am just supposed to put my bathing suit on and go down to the hot tub with my husband for his habitual Friday night scotch and cigar? Knowing "lucky" doesn't even begin to cover how I lived past the last round? So yeah, that's it. One thing that is so freakin' terrible about Fibromyalgia is you think you may be dying, but there usually isn't anything they can pinpoint as wrong. Save for the handful of times there are. See I walked around for four days between stroke one and two, acting like a complete loon, convinced the headache making my head feel like a watermelon hit with a sledgehammer was JUST Fibromyalgia. 

Thanks for joining,

P.S. The outcome following this article is I did not have strokes or get the flu. But Fibromyalgia did come back...

Tuesday, October 30, 2012

A Million Different Things

I am well aware I irritate people when they ask me what I did to get my Fibromyalgia managed. Hell, if I wasn't me my standard answer of "a million different things" would piss me off too. This is a life wrecking illness for so many and the desperation it can coax out of a person, well it's pretty intense. After I got sick and my inclination to curl up in a ball and die became futile I searched high and low for that answer myself. I couldn't find it, though. There were plenty of people selling the cure, or preaching a school of thought. No shortage of books to read and opinions from fellow-patients and strangers alike. But none of them fixed me. Waved a magic wand over my head and sent me back to life with a swift pat on the behind. They all just confused me. Made me feel bad about myself because I wasn't able to brush this off and go about my business. Inflamed self-doubt and flagellation because so many people made it sound as simple as a decision, one I was just too weak or stubborn or oblivious to make.

In the beginning I didn't know what to do with myself. I was raised on modern medicine. When I got sick I went to the doctor and they fixed me. Sometimes it was a pill or advice to rest, a couple of times a surgery, some hospitalizations thrown in for good measure. But I always rebounded, bounced right back to where I left off, so I didn't have much reason to question them. Then my eyes were peeled open by rubbing sand in them. I got very sick and not only could my doctor not tell me why or what to do, they didn't even seem to care! Treated me like I was a nuisance when I thought I was dying the slowest, most painful death imaginable. Well when the going gets tough the tough starts learning how to survive, and that is what I did. It took me many years and countless efforts to break through the deep sickness my body was bound in. And I am still sick today, but not at all like I was then. Knowing what I know now I couldn't find the answer because there was no one answer. I really can't say any one or five or ten things did it. It's far more about what didn't I do, than any one thing I actually did. I darn near deconstructed every aspect of my humanity and put it back together again, with many enormous setbacks along the way. 

At some point throughout this whole process I became a health conspiracy theorist. It was a gradual shift, subtle at first. But the more I learned the more confused I became about the life I lived. Information like artificial sweetener and birth control pills being bad for me didn't make any sense. Isn't that what the FDA is for? Now I laugh, for I had no clue what was in store for me or how quickly I would abandon blind faith and start thinking for myself. The more I read and studied the more what I was learning started making sense and the more I changed. As a natural skeptic I challenged what I learned every step of the way against my own reasoning and practical experience. No one doctrine swept me up and enraptured me with it's truth. Instead little bits of awareness started to break through the pain and sickness as I started to find my truth. So I still have no one answer, I have a lifestyle. I'm greedy. Modern, holistic, alternative, complimentary, if it works for me I use it. My illness is managed because my life is managed. Seven years in I am starting to find my smile again, my joy. Lightness in my heart that was weighed down with the burden of sick for so long. Now I can look back and thank my lucky stars I've survived this, not stomp around in bitter anger that this is my life. But it has taken me so incredibly much to get here and a lot of stomping bitterness lies in the wake of my path.

So how did I get my Fibromyalgia managed? I opened my mind and didn't give up. These are the books woven into the tapestry of my life which led to or inspired the million different things I directly or indirectly did to get managed. I've found with this illness no two journeys are the same. Each person has to seek and find their truth, which undoubtedly is not the same as mine. I receive no kickbacks for posting these titles and am not linking them to any websites because I don't give a rats woo-ha where or if you buy them. But for those who really want to know, this is what laid the foundation of my journey back to health... 

-From Fatigued To Fantastic by Jacob Teitelbaum, M.D.
-The Body Ecology Diet by Donna Gates and Linda Schatz
-Solar Power For Optimal Health by Marc Sorenson, EdD.
-The Maker's Diet by Jordan S.Rubin, N.M.D., Ph.D.
-Ageless by Suzanne Somers
-You On A Diet by Michael F. Roizen, M.D. and Mehmet C. Oz, M.D.
-The Master Cleanser by Stanley Burroughs

Thanks for joining,


Thursday, October 25, 2012

A Rebel Yell

I was one of those angry rebel teenagers. Luckily there were plenty of folks who loved me so somehow I managed to survive a tumultuous adolescence. But during that time I established some pretty scary patterns that followed me into adulthood. I don't remember how many years into my career I was when I realized I had a bad attitude. It was a hangover from running around and telling the world to go to hell during my early days of independence. There was just so much to rebel against then! But now it was only hurting me. Nobody cared if I stayed out past curfew or went to class anymore. It was as simple as either bringing home a paycheck or not. Make a success of my life or don't. It was completely and totally in my hands, and mine alone. So I got with the program and sought out therapy, trying to figure out how on earth at the end of all that hell-raising the only person I was still hurting was me. 

Like everything else in my life hard work, perseverance and the refusal to allow an unsatisfactory present propelled me forward. A wee bit older and wiser, I could now examine my options with a hint of objectivity and honesty and choose differently. This little attitude shift served me well. I got a big promotion at work and learned where I needed to practice discipline and restraint to achieve my long term goals. The concept of ignoring negativity and embracing positivity opened up my world. I could now see further than the instant gratification in front of my face and knew what to do to make it there. I was movin' on up to that deluxe apartment in the sky! 

And then I got sick. Everything changed. It was no longer about choices, but survival. It was utterly maddeningly horrific those first few years. CFS/ME and Fibro pushed me to the brink of my sanity so many times I am still shocked some days to wake up and have my wits about me. There is a unique kind of hell in having a serious illness nobody takes seriously. Every ounce of improvement or bit of health I have today is mine because I fought for it. Nobody handed it to me or gave me the recipe for how to find a quality of life worth living on the other side of chronic illness. It's so darn complicated I don't think anybody else's recipe would have worked for me! At first I had no clue what I was doing, or that it could even be done. I just knew I had to do something. And sure enough slowly, very slowly, lurching in a zig-zagged path that went backwards half the time, I was able to find my way. Looking back now I can't help but think knowing I'd changed my reality once gave me the strength to believe I could probably do it again.

Thanks for joining,

Monday, October 22, 2012

A Fibro's Ode To Dr. Seuss

Suddenly for some reason my behavior strikes me as completely ridiculous. So absurd in fact I have absolutely no idea who the woman was that did this. This is my flare to flurry pattern. It's a pretty simple routine. I feel okay because I have been sleeping and taking care of myself and exercising and not freaking out over one life trauma or another. So I fly into a flurry to catch up with the life I am supposed to live. The life of a woman with a clean house and her bills up to date, all the laundry done  and calls returned not nearly so late. Unfortunately she said her farewell in 2005 but me, the person sitting here writing this right now, I don't think I noticed! I sure haven't acted like it. Because I have expected me to be her but we are not one and the same. Not anymore.

Didn't matter, because in attempting to meld her, the busy, outgoing type-A, with me, the socially estranged, overly-cautious recluse I have become, that type A fought to the top every time. It's comical, in retrospect. In a sick sort of way. So here I run around in a flurry doing everything I am supposed to, in order for me to be pleased with me. And in doing that, in acting like her, I slide right into flare's home plate. Then I feel like a bug who hit a windshield so I focus on ways to make myself feel better. That sleeping and exercising and managing stress thing again. And low and behold there is a God because it works! Slowly but surely the flare will abate, I'll stop feeling like the bones inside me are going to crack or the fiery swirls of chainsaw are whirling around my back.

So there I sit feeling better. What do I do? I look around and the house is a freakin' mess! The dogs need to be groomed, bills paid and oh but don't forget to have dinner made. Calls need to be returned so people don't just write me off forever. And I really do ask myself what the hell is my problem? Why is my life so out of control? Why is it I don't have a job again? Really, I mean really, why do nearly every morning I sleep until ten? And then she steps in... Before I know it I am racing around trying to get everything done at once, good riddance! I am apologizing for every failed expectation and lost stroke of brilliance. I promise myself this time I am going to do better, not succumb to some pesky little illness. And before I know it, oh I think by now you know where this goes, I've gone and done it again, and let the Fibro wall smack me in the nose.
Thanks for joining,

Thursday, October 18, 2012

What I've Become Is So Burdensome

Last week my mom invited me out for lunch and a shopping excursion at our local mall. I was thrilled to join her. I haven't been getting out of the house nearly often enough for some time now and woke up full of purpose that morning to actually have something fun to do with another living and breathing human being. But I have been in quite a state lately and was a bit of a hot mess. Like almost cried eight times over lunch hot mess. Considering the week before I watched Gwen Stefani's True Hollywood Story blubbering with snot and tears clutching at tissue like a bride left at the alter, I guess the fact I didn't actually cry was progress. Even if I felt like a raw emotional wound. So we made it through a tearless lunch and ventured out into the mall. It took all of five seconds for me to realize I felt like an alien in a foreign land. Mind you I worked at this mall for a few years before the strokes and spent the better part of ten years working in a department store. This should not be foreign territory at all.

But, alas, it was. People looked weird. Their outfits and hairstyles and makeup looked weird. I kept catching these faces frozen, distorted and puffy from the bevy of cosmetic "procedures" so popular these days. They looked really weird. The merchandise was odd, the way everyone related to each other seemed off, everything was just left of center. I walked around in a daze not really knowing what was going on or how to engage and participate. Seriously, in my reclusive anti-social efforts to get my brain and body to heal without inflicting my crazy on everyone else is it possible I have become this out of touch with the world? A few days later through the crystal clear 20/20 of hindsight I am happy to say no I have not.

Because I wasn't just having a rough couple of weeks, I was under severe distress. I'd been stepping down on some medications and the withdrawal was awful. I had my viral flare thing going where the roof of my mouth starts shredding and my face starts throbbing with the stab of a million nerves. That alone puts me in evil woman mood. And I was hormonal. Very. But it seems I don't realize these things until I get through them, that there might be a reason for my whacked out state, no matter how many times I run around this track. So I repetitively go through the same cycle of blaming myself for massive inadequacies when I am hormonal or mourning my lost opportunity in life when I am in a flare. I actually took it so far this time to actually start asking myself why I wasn't strong enough to stop this illness from taking me up in its evil clutches in the first place. Like I was supposed to have known what was to come and how to stop it. Well imagine my relief when I woke up on Friday morning and suddenly, like the flip of a switch, the sadness darkening my days for what felt like weeks and weeks was gone. Oh sweet relief, life isn't a miserable terrible experiment gone terribly awry after all! Had I found my joy or the flare just ended? Are they even different things or two sides of the same coin? So I went yesterday and got a tiny little calender I could track my activity, symptoms and mood, and I am determined to follow through with recording my reality this time. Maybe if I have it to look at the next time Just A Girl comes on and I face plant sobbing into a box of Kleenex I will realize something bigger than I can control is at play here and just be nice to little 'ol me.

Thanks for joining,

Friday, October 12, 2012

No More Rheumatology?

I had my twice annual doctor appointment this past week. My last visit in May didn't go so well. I was hurting and needy and goodness me if some doctors aren't just like a man looking for a one night stand, they don't want you in the problem phase! I felt judged and misunderstood and diminished and not listened to. So I left in a huff and declared I was going to find another doctor which I have not done, no not at all. Haven't even started looking, it's just so overwhelming. I rationalized since my Fibro is pretty well managed, and a new doctor wouldn't be able to do much else for me, I could skip out on practicing what I preach. Not very noble but at least I'm honest about it. Well my mood as of late has been pretty grouchy and I was worried I would wake up the morning of the appointment in hell-woman mode and spew it all over my doctor. After the last appointment it became very obvious negative emotions are a massive hindrance to my communication with her. But I woke up and didn't hate the world and went in with a calm and open mind. I wasn't going to diminish my reality, but I wasn't going to react to it in front of her either.

This time it went well, but I wasn't asking for anything, just routine maintenance. It was probably the most normal doctor appointment I've had since I got sick in 2005, matter of fact. So I came out with it and asked her point blank why I have been hearing from quite a few people that Mayo Clinic in Arizona does not treat Fibromyalgia patients anymore. She got "that look" on her face. Like she knew but couldn't say. She explained it's not that they wouldn't treat a patient who has Fibromyalgia in the primary care department as a primary care doctor, but Rheumatologists weren't seeing Fibromyalgia patients anymore as a specialty. Now this is one of my worst fears come to life, that Rheumatology as a practice would kick Fibromyalgia to the curb since more and more research is confirming Fibromyalgia is neurological and not a rheumatic illness after all. So I asked if Neurology was picking us up? No, she all but laughed, they were not. Now I personally have never been to see a Rheumatologist but hear their consult can be quite necessary to confirm a diagnosis or support a disability claim. They are the specialty that has housed our illness for over 20 years and established the diagnostic criteria necessary to separate Fibromyalgia from a "wastebasket" diagnosis. Is it possible we, the misunderstood, underrepresented, overly-blamed, confused, exhausted, pain-racked Fibromyalgia patients of the world will be left with even less acceptance in the medical community? Less doctors with a responsibility to help us? No specialty to claim a field of study or channel of research?

Holy Mary Mother of God I had to get my rosary out and run a few decades! This was not good news, not at all. We can't take less, we need far more! How are people going to survive this illness in the changing world of healthcare and insurance and medicare? So many are hardly surviving it now. We don't have any give to spare! How do you make a school of medicine claim an illness? Is there a process, a petition? Are people already doing this? So I came home full of questions with no answers and a heavy sadness in my heart. This problem seems insurmountable, how to get adequate medical care and social services to Fibromyalgia patients. So many people have this illness but because of the stigma of it not being real, since it's a new variant to modern medicine, nobody wants to admit to it or talk about it. How many times can someone tell us our illness is our choice or all in our heads or because we are depressed or drug seekers before we just shut our mouths and go about our business, swallowing the pain of a thousand swords? For so many it doesn't take long. We have a problem friends, and I don't have any answers. Yet. But at least I now know why Mayo will no longer treat Fibro.

Thanks for joining,

Monday, October 8, 2012

Get A Second Opinion

Well let me tell you about the most awesomest and funnest roller coaster ride I had this weekend! My husband took my car to get an alignment on Saturday morning and then we went to the dog park. About 30 minutes after we drop it off the guy calls. Oh no, he can't align our car. The control arms are about to break off, all four of them, he says. All four struts are leaking too, and need to be replaced. So under the guise of not taking our $49 to do an alignment which won't stay aligned, he tells us to come pick up the car because he can't do the work until he can order the parts from the dealer on Monday. "What's the estimate," we ask. "$2,200," he says. So with a grave warning that driving the car will cause even more serious damage, like the wheels flying off as we cruise down the road, we pick it up and head toward home with our heads held low. Luckily we live across the street. My husband starts doing some research and becomes increasingly more confused. The "symptoms" of these problems, shimmying and shaking at high speeds, squealing and popping from turning the wheel, all the signs we need new control arms and struts, are simply not present. None of them. It just pulls a little to the right. So something is clearly not adding up.

Yesterday we took it to another shop. Didn't say anything more than we need an alignment. We wanted them to come to the same conclusion as Mr. $2,200 all on their own. However they call us a couple hours later and tell us to come pick it up, it's aligned. BUT we may want to take the right front tire in to get balanced because it is a little off. They could do it and charge us $15, but they know the shop we bought the tires from will do it for free. So now we are in full tactical alert and race over to pick it up, bogus $2,200 alignment estimate clutched in my hand, full of confusion and questions. Long story short the guy confirms there is absolutely nothing wrong with either the control arms or struts and actually laughs when he sees the bogus estimate. To say I wanted to give him a big kiss on the cheek is an understatement.

Couldn't be happier, oh no we could not. But the trauma we were under overnight thinking we had to come up with $2,200 we just don't have was pretty profound. Ultimately I decided to look at this as a big fat lesson on how things really could be worse and found a bucket of gratitude in my heart. Even if I wanted to clobber Mr. $2,200 with a caveman's bat really bad. My husband calls me this morning singing the praises of a second opinion. I tell him a story I am sure to have relayed at some point in the 13 years we have been together, but the lesson seems timely so I repeat myself. "Did you know my mom went to the doctor and he told her she had a huge tumor on her uterus and needed a full hysterectomy at the age of 23? She didn't have the money for the surgery so she went back to her parents house and went to her family doctor, trying to figure out what to do. He told her she did not have a uterine tumor at all, she was pregnant. Voila, here I am!" Moral of the story, sometimes money problems make you reevaluate your obstacles in ways you wouldn't if the cash was no big deal. And NEVER underestimate the necessity of a second opinion, especially when the symptoms don't match the proposed cure.

Thanks for joining,

Friday, October 5, 2012

Are Cancer Patients This Mean To Each Other?

People use The Fibromyalgia Fun House on facebook to ask questions pertaining to living and coping with Fibromyalgia in order to gain a cross section of answers. It's become a great source of information from people who actually live with the illness and thrills me to see so many coming together to offer support, encouragement and information to each other. Well the other day I had a question. Silly me, I don't know what came over me, but I guess I thought I had the right to ask it seeing as it's my page and all. I was hard at work updating The Fibromyalgia Crusade website and wanted to hear from patients who tried the "wellness" approach to managing Fibromyalgia, combined with modern medicine, and had absolutely no results or lessening of symptoms. By changing my life in a million different ways I was able to get out of the hell of unmanaged Fibro and recover a decent quality of life. But I know what works for one does not work for all and I wanted to hear from the patients who tried, but it didn't help. 

So I posted the question. Came back a few hours later to look at the responses and almost spit my chips over one of the comments. An individual wanted to know why I was asking. They told me how terrible I was for trying to sell a "miracle cure" for Fibromyalgia. Blowing smoke up their asses, I believe was the phrasing used. I was shocked to say the least. Miracle cure? What on earth was this person talking about? As I continued to read the annihilation of my character their motives didn't become any clearer. By the end of the comment this person had chewed me up and spit me out. Told me I was terribly selfish for trying to make a buck selling poor sick people a false cure. Judge, jury and executioner, I had been tried, convicted and hung in the court of this person's comment. But I was still very confused. I didn't mention a product, just asked a question. I never tried to sell anything, other than awareness bands and t-shirts, which according to my understanding of the laws of physics couldn't be construed as a miracle cure. Could it? I was very glad I wasn't in a sensitive mood or I might have taken this ridiculous tirade personally.

But this experience reminded me of one of my most shocking discoveries when I became active in the community, the utter lack of respect many patients have for other patients. It made me wonder if people with other illnesses are this mean to each other too? Does one cancer patient get mad at another because they have a different type of cancer? Or are in different stages at the point of diagnosis? If chemo or radiation works for one patient are they chastised and harangued by those it does not work for? What if someone catches it early enough, has it surgically removed and is cancer free? Are they told they didn't "really have cancer"? If they do all the treatments and do not recover, are they then told they didn't try hard enough? What about the patients who decide to include a wellness approach to their treatment, does a certain sector of the patient body declare them public enemy number one? I can only assume there are far more "miracle cures" out there for cancer than Fibromyalgia. For crying out loud it's a terminal illness! We are not the only ones people try to make a fast buck off of in our time of need. But just because this faction exists in the world does that give patients the right to treat each other with unprovoked disdain and hostility? I don't think so. I have a very hard time imagining a bevy of catfights erupting at a breast cancer walk because not every patient has the exact same experience or responds in the exact same way. 

I believe we will get so much further together than apart. We struggle to be taken seriously, not dismissed as depressed or told we are exaggerating a few muscle aches and sleepless nights. Massive differences exist in the patient body. Some are disabled, others work full time. Some got the flu and were left with Fibro, others have five other ailments in addition to Fibro. Not a one size fits all illness here folks! It is with perseverance and unity we will see a change in the way society reacts to our reality. It is with respect towards other patients we can learn and grow to figure out how to make Fibro fit around our lives, not our lives fit around Fibro. And it is with compassion toward others we can find the greatest respect for ourselves.  

Thanks for joining,

Wednesday, October 3, 2012

Snippy And Bitchy

Oh was I in a mood today. So snippy and bitchy I annoyed even myself. Kinda like in that movie Beetlejuice when a second head springs out of Michael Keaton's neck and says horrible things. All I  could do was stand there mortified and watch it happen. My dear husband finds himself privy to short tempered snaps and condescending reactions for anything and everything he does. How he puts up with me I just don't know. Hell, I can barely put up with me! It's hard to be nice while suffering...just plain hard. He is bearing the brunt of the emotional effects of my illness as much as I am. I believe that is what prompted him to turn to me in frustration this morning and say, "When you are on a new drug I feel like I am on a new drug!" Wow. I try to make a conscious effort to stay positive, and when I am in one of my "moods" stay as far away from him as possible. I know full well I can quickly turn into one critical nit-picking nightmare of a broad with little provocation. And he really does give me the space to get through it even though I know it hurts him when I withdraw. And once again that brings me back to that all too familiar feeling of guilt...always so much guilt!

On our latest Costco trip he suddenly stopped me mid-aisle and turned to look at me with love in his eyes, asking if I remembered when I was at my worst and we would get halfway (if that) through the three football-field sized mega cinder-block structure and I would throw on the brakes. I was so sick and there was so much stimulation and too much to choose from and way too much square footage to cover. I had hit my "wall" and was done. So we would leave the store, shopping half done, and head home to put me to sofa-rest. It was also during this phase that he would come home on his lunch break from work and carry multiple baskets of laundry down three flights of stairs so I could coin-op in our complex, too weak to do the job myself. He has picked up major slack in our lives to compensate for my illness, all the while holding jobs he did not like, fending off potential friendships because the reality of our financial situation could not afford new friendships, foregoing living his life because he did not want to live it without me right next to him...and continuing to love me and support me with all of his heart.

I believe we have made it as long as we have and through as much as we have because of sheer determination. We were a blessed match from the beginning, and despite many setbacks and wrench-dented roads we have not taken that gift and squandered it. He is a man of integrity and honor. We have worked so incredibly hard to put our relationship first and make it the priority of our lives. I feel like there are three of us in this marriage; me, my husband and the marriage. She has taken on her own identity and is the primary focus, coming long before our own individual needs. It is returning to this philosophy time and time again that allowed us to push through the rough patches and make it to the other side. But I have to give myself some credit here as well. When my health and sanity failed I spent the requisite amount of time wallowing in self-pity and misery, and then got mad and refused to play the victim, grasping onto the non-optional sheer determination that I was going to recover from this, I was going to get my life back. How much I could not tell, but was insisting on at least enough that I could exist in the outside world in some form or fashion. My quest to recover, or manage Fibromyalgia was/is long and tenuous, but I have restored a quality of life that I see so many searching so desperately for. This is not an illness that is managed easily. No doctor is going to give you a magic pill or prescription for absolute healing. Fibromyalgia is scientifically mysterious at this juncture in the practice of medicine, but that does not mean there are not ways to treat it and gain some life, passion and laughter back. I cannot tell you how to do it, we are all different and it affects each person individually. I can just tell you what I did and that it can be done. Oh yes I still struggle plenty, but when I take a second to pause and reflect am amazed that I can not only make it through the entirety of Costco but then come home and put everything away!

Thanks for joining,

This blog was originally published on 10/13/10. 

Wednesday, September 26, 2012

The Scathing Memory

While organizing a box of old paperwork I ran across a fat stack of medical records. The experience was so monumental it took me two days to even have a recognizable feeling about the whole thing. At the time all I could do was stare at what was before me in awe. I remembered making those complex charts of all my supplements, lists of what to take and how often and if I should take it with food or on an empty stomach or not within three hours of another supplement with instructions just as complicated. There was a folder to flip through with tabs for the months and within each month years of charts and graphs and descriptive script chronicling every ping, pang and stab of pain I felt. Each migraine, day with an irritable stomach, night I was up till 3AM because my brain just would not shut off. Paragraph after paragraph instructing myself to cheer up and quit pouting, stiffen my quivering upper lip and believe in the power of a positive mental attitude, when all I wanted to do was find a quiet dark corner and curl up into a ball and die. And what I spent! Oh my God I could have saved a failing first-world nation on what I spent to get "managed." Well practically.

Staring at this paperwork that was the remnants of the, pardon my profanity, fucking nightmare CFS/ME and Fibromyalgia inflicted on my life, I felt nothing. Numb. I remembered all of it, well most of it, but couldn't access what it felt like. Not the complexity of desperation and denial and anger and sheer panic I felt as everything bottomed out from underneath me. Like poor Alice falling down the looking glass, racing past the smiling faces of friends no more and the career I was supposed to have, babies I should have birthed and life I thought I would live. I stared at this all in awe but couldn't feel the gaping hole of ache in my heart. It took me two whole days to do that, remember what it felt like to walk that dark, lonely and painful road. Truly reflect on what a complete horror it was to get those doctors notes so critical to getting those state disability checks that were the only way I could pick myself up and start to get better. 

It took two whole days, and when those feelings hit they hit hard. Knocked me on my ass, the power of the anger this whole experience created. I thought I'd dealt with it but life is like nothing if not an onion. Peel back one layer and there is always another underneath waiting to make you cry. I finally saw the whole thing with the crystal clear 20/20 of hindsight. I was robbed! Of my life, my future, my opportunity. No that does not mean my life is still not worthwhile, or maybe even better off in the long run. But recognizing the past for what it is doesn't invalidate my present, either. Life seems to be gearing me up for something, because sure as one domino topples another I am being smacked repetitively in the face with acute and scathing memories of the worst of this illness. Flashes of pure utter living hell and how impossibly hard it was to drag myself out of the gutter. It's pissing me off something fierce and reminding me of the conviction I stood in when I decided to make my life about Fibromyalgia awareness. Getting sick with a non-terminal illness shouldn't annihilate this many patient's lives, it just shouldn't. And if it's the last thing I do on this torturous green earth I am going to do something about it.

Thanks for joining,

Monday, September 24, 2012

I Can't Do Two Things At Once

I sit here limp and panting. My nerves are ramped up and over-stimulated. There is a slightly frantic undercurrent in the air and as I look around the room waves of energy snap back at me. You are never gonna believe the grand old party I had getting here! This is what happened. I am in the process of organizing every darn scrap of paper I've been carrying around and collecting since I first filed a tax return in 1992. It's a lot. Last night I started the job and today sat for four hours in front of the TV sorting more scraps of tree pulp than anyone should look at in a day. It's hard work, trying to decide what to keep, shred, trash or do something about. Well as I am working I can feel my back start to ache and muscles begin to tense up. But I keep going. The longer I work and the more uncomfortable I become the more my nerves buzz to the point I suddenly cannot make a decision and my concentration simply will not split. Sensory meltdown is blowing trumpets at the gate to hearken it's arrival! 

I get up for some water and while I am standing at the kitchen sink the TV is blaring. My mind is stuffed full of insurance policies and car registrations and past employment records, the crap I have been looking at for the last four hours. Water is pouring from the sink into the pitcher. The ceiling fan is whirling. Then my husband asks me a question. And that's when it happens. EXPLODE! "Don't ask me a question! I cannot do four things at once my brain is melting!" I scream. "The TV is one," I yell and point at Elvira on Oddities tying a necklace of human teeth around her neck. "The water is two. The fan is three and now you want me to listen to you, think about what you are saying and then give a coherent answer? That's five!" I holler at the dear guy who just wanted to know where he could put some stuff in the office closet.

Yes quite a sensory meltdown party I had. It's nuts. I don't know many people who understand what that is like, other than my Fibro friends. I get the jokes, the wait until you are my age snickers when I complain about it, and it takes a lot to not grab the person into a vice-gripped headlock and give them a nugie! It's not the same, no not at all, to darn near have an anxiety attack over making a stupid decision like if I should defrost the chicken or ground turkey for tomorrow night's dinner. But people don't get it. How, in this day and age, can a healthy and productive member of society comprehend all it takes to truly filter out the barrage of things that are happening at any given moment? Things they ignore or don't think about are like an individual celebration all on its own to us. So there you have it, I was sorting paperwork and watching TV and the sedate environment of my living room sent me into a spiral of sensory overdrive. The home that houses two adults and two small dogs. Jeez, can you even imagine how much fun I would have on a street corner in New York City?

Thanks for joining,

Friday, September 21, 2012

All In

I forgot what I was doing. Last night I remembered. See my husband and I are trying to execute some life changes and are at an impasse. We really can't proceed without my income. We've hacked it up one side and down the other and the alternative is so damn undesirable it's pretty much become a non-option. Currently I sit in that wonderful paradox so many of us find ourselves in. At the age of 36 I am disabled enough to not be employable in my field but not disabled enough to be disabled. Which means starting over, which I did two years ago when I quit my makeup artist job and started this blog. But what have I done with it?

The blog a lot, but I mean the fire. The passion. The conviction that God saved me from death to do good work in the world. Because laying in that hospital bed knowing it was no small miracle I was ever gonna see the light of day again, well that changes a person. Their are offers that are made, deals that are bet. I made a promise to stop living for myself and do something to help the suffering in the world. I was living on time that was not my own, if I were to survive, so devoting it to service made all the sense in the world. If somehow I missed the point six months on high dose steroids drove it home because in that time I whipped up a frenzy of an awareness campaign and started The Fun House on Facebook and pretty much devoted my entire life to Fibromyalgia awareness.

Ha ha ha, wanna make God laugh make a plan? Isn't that what they say? Well then I came off Prednisone. There are hundreds of blogs chronicling the misery of that comeback. It ripped me off, chewed me up and spit me out. Fibro did, and the fissured synapses of my brain from the strokes made it so much worse. But one day not too long past I realized I was healing. Holy shazam, I could go to the post office again without crying when the mean postal lady yelled at me! Oh that was a good day indeed. However my conviction to change the world, or at least the face of Fibro awareness, was long lost in the background. Buried beneath a pile of woe is me and anger that I had no certainty from one minute to the next if I was going to have to stare that grim reaper in the face again.

Last night I cried to my husband and asked him to remind me what my intention was when I started this whole thing. Why did I give up my life to this cause? What have I been working so hard for these last two years? Suddenly I remembered what it felt like lying on that gurney, pushed around from procedure to scan to lab, praying with all my might this wasn't the end for me. I remembered why I made the promises I did, how I needed to give back for the blessing of more time with those I love. And how I was going to stop at nothing to help suffering in the world in whatever way made possible. "If it can be done I have a responsibility to do it," I heard the words I repeated a thousand times reverberate around my head. So last night I found my conviction, my fire, my passion. Last night I remembered what I was doing. I'm throwing all my chips in and bringing change to our cause in whatever way made possible. I had to pump the brakes for a while there, and really stumbled off course, but by the grace of God go I. And after all this was done and I sat there with my heart once again full of purpose I couldn't help but wonder how all this happened to a girl who really really didn't want to get out of bed when she opened her eyes yesterday morning.

Thanks for joining,

Tuesday, September 18, 2012

Like Sand Through The Hourglass...

I sit here watching General Hospital crying. Now this is not entirely out of character considering we spend nearly an hour together five days a week and have for almost a decade. That is no small investment in time. I watch the characters go through a catastrophic nightmare about every six weeks, with lots of far-fetched fluff and long camera pans into the distance in between. It's easy to cry when tragedy strikes, especially considering I get fired up over my own woes watching the twists and turns of their dramatized tribulations. While mine are not nearly as horrific as the soap opera inflicts, and I don't return back into a healthy rich woman with as many lovers as enemies between incidents before chaos strikes again, oh yes I will still say I am a sucker. One who usually cries when someone is married, born, falls in love, dies or survives.

So what has a misty-eyed flared-up isolation-deprived lass such as myself all upset? Because they are rejoicing. And I'm not really upset, I want to join them. They are celebrating having just survived near-extinction from a neurotoxin leaked into the town's water supply. Seriously. And as they dance around in the rain I cry happy tears because it dawns on me the only reason to work so hard to survive trauma is to celebrate it. Celebrate surviving it. And celebrate the life that is ours still, no matter what we endure. Because every day is a victory when sick, it just is. 

Thanks for joining,

Monday, September 10, 2012

It's Her Party I'll Cry If I Want To

I am shattered, wrecked, in shambles. The word flare doesn't even begin to cover it. See I was given an opportunity to keep up with a few of the more capable members of my family and wound up looking like a colossal loser. A couple ladies joined efforts to throw my mother a birthday party and were kind enough to include me in the roster of hostess'. I suppose they thought they were asking an equal, or even someone simply not as energetic as they are, but instead they got me. However good I thought I was doing, whatever triumph I had over Fibro, any illusion of being able to, just for one night, be the me I was before I became sick me, oh it's over. Crushed into the dust beneath a pair of dangerously high platformed wedges I stupidly thought I could run around in all night. I haven't felt this disabled, incapable or just plain foolish in ages. 

This entire circumstance was slated against me from the word go. Technically I should have declined to participate and just gone as a guest. But it was my mom's birthday party. In my heart of hearts I just couldn't opt out. Hell, I wish I could have thrown her the party all by myself! I really kept my contribution to a manageable level, I thought. And then came the night before the party when I went to three different grocery stores and was up until 3AM rollings beef pigs into Pillsbury blankets. And the morning where I raced around at top speed (another two stores) doing all the last minute things I hadn't done before. Then there was all the work of setting up the party. It took me all of one hour of hanging streamers and blowing up balloons before I passed the point of fibro safety. That razors edge where if you stop everything you are doing right at that very instant and sit for a day you might be okay, able to avoid a flare. No of course I kept going, and four hours later the party started. Barely two hours into the festivities I was lurching around the kitchen like a zombie searching for my dirty cookie sheets in tears. My sensory overload felt like I was at a rave on some horrible psychedelic drug that made you hurt really bad too. I didn't know where I was, what I was doing, what was going on or how to figure any of it out. And because of the darn shoes I had on I couldn't have gotten there even if I did! Thank God for my very understanding husband who got me up and out of there without delay the second I said "I gotta go." 

But I left before pictures, well before cake. Right when things were just getting going. And I was bitter about it, oh you betcha. Mad I couldn't stay, furious at the hell I knew was in store for me, the price I was destined to pay. Upset because I was incapable of contributing my fair share. My family may have been irritated I was lazy, or my paranoia made me feel that way. They may have thought I was dramatizing my situation, or my guilt made me think they did. Does it really matter? Because at the end of the day I simply didn't measure up in a world of people who do. And it makes me never want to be around them again because I feel the gap between their comprehension and my reality just can't be bridged. Some gaps are just too big. Ultimately I must say I am the one who betrayed myself. I allowed the situation to fly completely out of my control. I didn't do what I should have done which is decline to co-host, but I really didn't want to be a bad daughter, either! It's kinda absurd now, with the wonderful vision of hindsight, that I just thought I could give it the ol' college try and the effort required to pull it off would be mine to spare. So here I sit bewildered, confused, gun-shy and traumatized, wondering once again where I fit into a world of healthy expectation. I don't know when I am going to feel human again. All I can say is hopefully in time for my husband's birthday on Friday...

Thanks for joining,

Friday, September 7, 2012

Let It Roll...

I am an uptight control freak. As much as I try to relax and let go that's just who I am. I spent years self-medicating it away, hoping I could dull the intense distraction of noticing every little thing that happens. Figuring maybe if I numbed myself enough I could find peace, but it didn't work. They say it's the type "A" personality who are prone to getting Fibromyalgia. The over-achievers, the doers, the perfectionists, the driven. I certainly fall into that category. I believe now if I'd listened to my body and not pushed through CFS/ME I would not have developed Fibromyalgia. But that's not how I was raised, isn't the society we live in and simply doesn't pay the bills! I see many of you out there doubted by those you love the most who have no grasp, no concept of what you are going through. They tell you to tough it out, get up off the couch and go live your life, exercise the pain away, go focus on something else, and it breaks my heart! I want to grab them by the shoulders and shake some sense into them. Fibromyalgia hurts so freakin' bad you really can't believe it unless you have it, and it's not just going to go away. It is real and until it's addressed it pounds the body relentlessly and soaks up every thought every minute of  every hour of every day. It is a real physical condition that must be treated or will continue to get worse.

One of the hardest lessons learned throughout my journey with chronic illness was how to let go, be it simple house cleaning or complicated life isues. How to let stuff roll off my back, not internalize stress and anger and frustration because the consequence would be immediate and catastrophic to my mental and physical well being. I would get sick in a matter of minutes, feverish, sore throat, throbbing sinuses, aching body. There were many injustices that happened when I was too sick to fight I had to let go because the ramifications on my health were so severe. There was a car accident where a man ran a stop sign and plowed into us and then lied and said WE ran the stop sign. Oh that one was hard! There was the hospital bill I was paying down and with no warning whatsoever was sent to collections. Then there was my job, cutting my hours and squeezing me into a nighttime position after the years of profitable management I gave them. But I had to let that one go, too. There were others I had to consciously decide to release back into the universe and trust that everything works itself out in the end. I was one sick woman and simply couldn't take it on and recover from this illness at the same time. 

Fibromyalgia has softened me. It has reduced my expectations and presumptions of life. It has taught me how to laugh at the absurdly painful and truly not sweat the small stuff. On my good days. It has taught me acceptance, acquiescence, compliance. Allowing what is to just be. In other words, taking that stuff that happens in life that ram-rods your spine straight against your back and sends shooting, radiating flashes of tension and stress right into your brain and letting it R-O-L-L off the slope of your curved vertabrae and drop into the ocean of I can't do anything about it. It's hard to get to that place, difficult to accept you cannot do what was once accomplished with ease. Extremely frustrating to not be able to fight for your rights because you just get sicker. But it is completely necessary as well. My parents are going through a divorce and on my last trip home I saw this same evolution transpire with my step-mother for entirely different reasons. I was worried about Yorkie's wet paw prints all over the hardwood floor and followed him nervously around on my hands and knees cleaning up each mark. It's what was expected of me back in the days of 'yore when I was growing up in that house. Well my step-mom, she too has come a long way, and told me to stop, she didn't care. Her exact words, "Who cares if the house is clean if there is no one here to share it with." By golly folks, I think she's got it!

Thanks for joining,

This blog was originally published on 9/29/10.