Thursday, December 29, 2011

Ode' To Prednisone

Oh Prednisone, what a double edged sword you are! I am taking you to keep the blood vessels in my brain open so I don't stroke again, but you are doing so much more for me than that. Fibromyalgia has taken a vacation from my body and I am in ecstasy! No pain, no stiffness. I can snap crackle pop my back into place with the slightest twists and turns. I can go go go, but therein lies the problem. I am a bonafide crack-head! I am manic and hyper and prone to fits of rage. I can't sleep or even really sit down to watch TV without taking Xanax, and the manipulation of my body with all these medications seems so wrong. I am only taking you for a short while, for if I can get through the first twelve weeks post-Vasculitius RCVS without another stroke I am in the clear (they say). But you are consuming me in the process! I am shaky to the point that applying eyeliner is impossible, so how am I going to go back to work and put it on other people? I am bouncing some part of my body at all times and am typing so fast I cannot even keep up with my own thoughts. If I don't eat it magnifies this all the more, and I really don't want to gain weight, having barely just lost the 30 lbs. Lyrica packed on. Oh Prednisone, my hated friend...

But it has also given me courage, to network with fellow Fibrates for the first time in the five years I've had this illness. And I am struck hard by how many different and far reaching health problems we all seem to have. Fibromyalgia is but one of myriad ailments for me, and it seems to be that way for a lot of folks I am chatting with. So what gives? It seems the total health cycle of the body is breaking down. Why? Are we the weaklings of modern times? Being attacked first because we are genetically or socially or mentally or emotionally vulnerable? The next take down in Darwin's survival of the fittest? No, I don't think so. I believe we are the sensitive and real. Having pushed myself so deep into the Fibromyalgia hole because I did not know to conduct life any other way, the stress and pressure to achieve so great, I can now look back and see the consequence of my actions. But there is no rewind button to push, just a lifetime of regret. Since I did not respect myself enough to take a step back, my body forced me to by giving out on me. So by virtue of pure necessity I had to withdrawal. From expectation, the type-A high stress lifestyle, super achieving at the expense of my sleep and diet and exercise and happiness and sanity. And demanding beyond human results. Fibromyalgia has forced me to shed those habits and expectations. Only when I found peace with my true self was I able to begin healing.

The pain of Fibro is overwhelming and made me SO angry! Why me? What do I do? Is this really going to take me down? How on earth do I live with this illness? In the real world we all need money to survive, and most are required to work for it, but who can work with this pain, this unrelenting and often doubted pain? Who can be a happy spouse or supportive parent or excellent employee or a confident and contributing member of society with agony and sickness coursing through every inch of our beings? So take a step back with me, and take a deep breath. Let's see if we can't start to love ourselves again. Begin to meander up the seemingly impossible vertical cliff of living with managed Fibromyalgia. A place where there is a lot less criticism of not getting enough done, but instead rejoice in what does get accomplished. Re-defined expectations to be kinder and gentler to you. Simplifying your lifestyle and surrounding yourself with those that love and believe in you. Continuing to search for a supportive doctor who will take you seriously and work with you through the complex maze of medications until you find your right treatment. Give yourself permission to suffer and hate this disease, and try to reach deep down inside and find the fight of your life, for that is the only way I have found the strength to get any better.

Thanks for joining,

This blog was originally published on 8/12/10. It has taken me the better part of the day to unravel my mad rantings and ravings into something that makes a point. I hated that drug, it took me over. Reading about it over a year later is not making me like it any better!

Everybody Knows Her

...or him. But we all know them. Those folks who walk around life oblivious. Carefree of the problems of the world, their own comfort and happiness their primary concern. They do not cry when someone else's spouse dies or mother is stricken with cancer. A mere "how sad" is about all they will usually muster. If they are hot or cold or hungry or tired the whole world halts in its tracks to allow them to sleep or warm up or cool down or eat. No matter the inconvenience this may cause. For they have needs that must be met so why on earth would we not help them? Selfish people exist the whole world over. Some we are even married to or birthed by or are born of our own flesh and blood. Others we are friends with, work with or for whatever crazy reason are forced to deal with.

Part of me wishes I could be this way. Fibromyalgia would be so much easier if I didn't give a rats woo-ha about other people's feelings. But for whatever innate guttural reason, other people's feelings are often far more important to me than my own. I will push and sacrifice and put up with endless amounts of absurdities. I will accommodate and acquiesce to the stupidest requests, blowing my carefully constructed life apart in the process. See I seem to have, and a great many of the Fibromyalgia patients I talk to do too, this people-pleasing complex. Not so much a desire to be popular and admired the world over. It is much simpler and far deeper than that. It is a need to be needed. A need to make other people comfortable, make them happy. It is the woman scrubbing her bathtub with a herniated disc in her back, she is our poster child.

We all have selfish people in our lives. And the stress or requirements or expectations can often become too much for us to take. Or we become aware of a whole insane aspect of our lives created and affected by these people that must change. Sometimes cutting them out of our lives is not an option. Sometimes it is the only option. Managing demanding relationships is yet another major component in managing Fibromyalgia. I have learned how to become okay with people not liking me, calling me selfish, or becoming irritated with what I won't do. But it still stings and makes me mad, for I don't like to be disliked. No matter how hard it may be, though, sometimes saying goodbye, no or not today is the sanest thing a Fibrate can do.

Thanks for joining,

Tuesday, December 27, 2011

How Grinchette Stole Christmas

My last blog was a sanctimonious display of my naive hopefulness. That we could skip the "gift" part of Christmas and then, and only then, would we experience the true joy of the season. What it was meant to be. Not about gifts and cookies and parties and trees and all the trimmings, but the pure essence of Christmas itself. This whole no gift thing sounded great in theory, and I nobly droned on and on about skipping presents because I did not have the energy, health or money. And how that was the solution I was choosing, for this year, to accommodate Fibromyalgia. 

So we skipped presents. And I woke up Christmas morning in tears. There was nothing to look forward to! There were no hidden gems under the tree for my husband to discover. Gifts thoughtfully planned out, serving to remind him how much I appreciate him. How much I treasure him. He had none. There was no over-indulgence he spoiled me with because he loves me and thinks I deserve it. There were no packages of things I casually mentioned over the last few months as needing but didn't have room for in my budget. There was nothing. I did not even wrap up Yorkie and Porkie gifts or buy my poor puppies a bone.

And I hated every last second of it! Maybe that makes me shallow but it sucked. I stomped around and grumbled, wondering what on earth set this day apart from all the rest. It was on a Sunday so not even church was out of the ordinary! We were lazy, watched TV and took the dogs to the park. Dinner was good, the day relaxing. But I learned a valuable lesson. There is somewhere between throwing your financial stability in the trash and no presents. It is middle ground. It is keeping in mind gifts are but a token of appreciation for those we love. The joy of giving rivals that of receiving, and there is no shame in exchanging gifts. My husband was a good sport. I looked at him halfway through the day and told him I was sorry I stole Christmas. I was sad about my choice. He teased me a bit, made me promise I was never going to "pull this crap again", and let it go. Thank heavens he forgives me easier than I do.

Thanks for joining,

Friday, December 23, 2011

Hot Tub Time Machine

I must be the only person in the world that cried at the end of Hot Tub Time Machine. I sat there with my husband and friend laughing at me in an understanding way as I poured out my feelings of bewilderment and regret. How was I sitting on my sofa two days past my 34th birthday having barely survived two strokes, four pancreas attacks and a debilitating virus under my belt, and a mysterious neurological condition still plaguing my present (Fibromyalgia)? I flashed back to my own high-school and college years and marveled at the road I've traveled. My childhood was unprincipled and colorful and I grew into a wild youth who began self-medicating at the crest of puberty. Always pushing the envelope of acceptable, I put my parents through hell and strove to define myself in the extremes during my teenage years. I was drinking and smoking and doing those crazy things inexperience tells you its okay to do, breaking curfew and sneaking out and being willfully disobedient. How they still love me is by the grace of God, that unconditional parental love thing or something. 

Thankfully my family had the foresight to help send me on a trip to Europe the summer between my junior and senior years of high-school, a trip that changed my life. I worked hard and saved up, quitting my shopping habit and ripping off my long fake fingernails in exchange for the exotic unknown of a month abroad. It gave me exposure to the world, languages, cultures, ways of living, perceptions, experiences...a whole different future. I went home with a stick up my ass, thumbing my nose at my friends running around middle-class suburbia in their cigarette-smoke steeped flannel shirts, getting high at their Nirvana grunge parties. I thought I was so beyond them. I was worldly now, had tasted it and wanted more. My senior year of high school found me different. Stepping away from my wayward party friends I decided I actually wanted to know some people at my 10-year reunion. I joined yearbook and went to senior ball, doing all those quintessential things high-school memories are made of. Stumbling off to a premier party school, college was an excessive indulgence of frat-house kegers and buck night at the bars. This continued on until pancreatitis caught my attention, well past graduation. Since then it has been a constant battle to allow myself to feel and survive the emotions without itching to dull the pain, the sheer pain of what simply feeling means to me.

So as I watched this group of jack-ass guys, miserable 20 years after youth had launched, bumbling around back in time like moronic teenagers, I saw how much what was becomes what is. I became overwhelmed with feelings of regret and remorse. Have I done this to myself? Did I cause these serious health problems during my youth of excess that are now manifesting themselves in my still very young body? Lots of people do far worse than I did, so why me? And if so, knowing what I know now, would I have done it any different? So as the tears sprung I poured out my heart. I know the one right thing I have done in my life was marry my husband, and our relationship was born from this youth I want so badly to regret, to blame. As I settled down I concluded that no, most likely I would not have done one damn thing different. Youth is dumb, pain is real, and all I can do now is pray by the grace of God I can find the path I was created to follow, step on and go for that ride. I am sick of being in the drivers seat.

Thanks for joining,

This blog was originally published on 8/6/10. I was very confused and emotional and had yet to experience what the treatment for these strokes would do to me.

Thursday, December 22, 2011

A Reindeer Named Pacer

I sung the song Rudolph The Red Nosed Reindeer to myself five times, swearing there was a reindeer named Pacer in the mix. But no, there is not. I wonder who sets their pace? Maybe none of them, that is how they get it all done in one night. There should be a reindeer named Pacer, though, to remind us all to slow down. And not just us Fibromyalgia patients, but everyone the whole world over, we need to learn how to p-a-c-e. Holiday expectation is out of control. The frenzy of shopping and wrapping and spending and cleaning and baking and cooking used to take me down anyway, but I figured that was because I worked retail. Long hours, irritable shoppers and open till midnight turned this girl into a good ol' fashioned Grinch. Once I got Fibromyalgia, Christmas became it's own special kind of hell. I was still stuck on the carousel of retail Christmas but I was sick, too. So I pretty much became accustomed to not liking Christmas. It was not the holiday itself, of course, but the hubalub surrounding it. The sheer unnecessity of what it had become. 

I no longer work retail, this will be my second year now, but I have yet to discover my Christmas spirit. Because the pace of the darn holiday is set by everyone else, still seeped in so much expectation. Expectation I certainly cannot meet. I tried burying my head in the sand like an ostrich and ignoring it, hoping it was over by the time I came up for air. But I am too impatient. I have actually talked my husband into skipping presents this year though, because I just don't have it in me. We don't have kids or money and that is what makes the present giving aspect of the holiday fun. But I also know waking up Christmas morning with nothing to squeal at under the tree is depressing. 

So I am taking back my Christmas! For me and my family. I am setting my own pace. One I can live with, accomplish, enjoy. I am wrapping up Yorkie & Porkie's presents from last year they have hardly touched and will put those under the tree. They do like to unwrap but seem to be more interested in clawing off the paper than what is actually in the package. Typical children. Maybe I will throw in an extra bone or two hidden in the mix to keep them busy the rest of the day. My husband and I decided the present we are giving ourselves is to not spend money we don't have. Come mid-January that will make me very happy. But on Christmas morning we still want to share the gift-giving glow. So I have set up a challenge. We are giving each other something that costs nothing. Maximum creativity is required here, but you would be amazed at what gifts already lie at the ready. Gifts of the heart, time, passion, excitement. Gifts of love. Of course I cannot tell you what I am giving my husband, for he might actually read this blog. But I wanted to share with you all today, my friends that understand what a challenge the holidays are when chronically ill, there is a way to make this holiday enjoyable and purposeful. Reach in your heart and find your personal pace. That is how I found my reindeer named Pacer.

Thanks for joining,

Tuesday, December 20, 2011

Many Shades Of Gray

The longer I live
And older I get
The more I realize life is not black and white.

As I discover myself
What is important, and what is not
I become more and more certain life is anything but black and white.

I experience and I grow
Emotionally, spiritually and mentally
And can pretty much guarantee I am looking at a rainbow of gray.

No it is not a colorful rainbow
Full of vibrant brightness brightening up ones day
Instead it represents the many shades of reality we are forced to play.

There is no pot of gold at the end of this rainbow
This vast and collective experience
Also known as life.

Good and evil
Right and wrong
Not nearly as clear cut as the rhymes of my childhood told me in song.

Happily ever after is subjective
Babies are not born with instructions on how to get them there
And life, oh it is most certainly not fair.

But if one is willing
To get wet and dirty and stomp around in the mud
Perhaps they can discover their individual joy.

That swirled up combination
Of every shade between black and white
That makes up our complexities, becomes our psyches.

Our love, passion and grace
Living life fully, laughing along the way
No matter the pain, no matter the price.

Thanks for joining,

Monday, December 19, 2011

Throw Myself Under The Bus

This weekend I was given an excellent opportunity. A chance to practice what I oh so loudly preach. An occasion to exercise carefully mandated conditions I know full well many people with Fibromyalgia must follow to maintain some semblance of health and sanity. Myself definitely included. The delicious joy of turning what is usually stressful on top of stressful, family visiting from out of town during the holidays, was mine to discover as I went about it in a whole new health-supporting way. The plan was to place emphasis on the people, the visit. But instead I flipped myself inside, outside and upside down to clean my stupid house, decorate my darn tree and hang the bloody stockings near the chimney with care. By the time my family arrived I barely said hello as I flew past them at top speed, racing on the roller-blades of a colossal flare into a thick brick wall.

I winced at the error of my ways, realizing I had done exactly what I knew full well was going to result in pain and anguish. But I was powerless to stop myself. Pre-fibro Leah marched in and took charge of the situation, running around barking orders at my husband and shoving laundry into the dryer while Yorkie & Porkie looked at crazy ol' mom yet one more time. She blocked me out when I tried to stop her. She told me I was settling for a life of mediocrity. She reminded me how much pride I take in my home and how sharing that with others made me happy, but only if it was "shiny like a new penny" clean. So she ignored me and proceeded full speed ahead. Of course once the pain, stiffness and exhaustion came she was the first one out the door, leaving me bewildered and confused as to how I got so completely off track. 

Here I sit. In bed. The guests are gone. I hurt and am mad at me. I was in pain and grouchy when they were here and did not have nearly as good of a time as I would have if I did not push myself to Amethyst preparing for their arrival. I am embarrassed. I knew better, know better, but still reverted to old behavior. But most of all I am humbled. In realizing how far I have come, and not come. Recognizing the thought process, intense rational, that caused old me to override new me and completely and totally throw myself under the bus in blatant disrespect. Yes I have learned. And I still have a lot of work to do in accepting the level of life I live now, my adapted life. Accepting it and embracing it. Oh I have a long way to go. The feeling of being struck repetitively across my back with a 2x4 is a constant throbbing reminder of my opportunity to forgive myself and do better next time. Really, that is all I can do.

Thanks for joining,

Friday, December 16, 2011

Nine Lives...And I Have Used Eight!

Here I sit pondering the flux of precious life from my hospital bed, having narrowly dodged the icy gripping fingers of death. Escaped its evil clutches once again. Remember that "worst headache I ever had" I was bitching about last week? Well it turned out to be the initial onset symptom of the most terrifying experience of my life. Last Friday afternoon while in the shower a sudden writhing and gripping pain violently struck my head and sunk me to my knees. Over the course of about an hour the vice-grip slowly released it's choke hold as I pushed, prodded and tried to massage the constricted muscles of my head, face and neck. It settled into what I believed was a horrific migraine. This was a pain that should have warranted my rapt attention. But I was so pathetically weary of being sick and for some stupid reason believed I could just will it away by refusing to acknowledge it. So I did nothing. After a few more excruciating brain-pain episodes accompanying a constantly pounding head I finally relented to an appointment with a P.A. at my doctors office on Tuesday morning. I calmed myself up to this point by chalking it all up to some sort of hormonal shift or another. We discussed, she examined, and we agreed I was indeed suffering from a hormonal induced migraine. She gave me a shot, waved her hands in front of my face to rule out any neurological origins and sent me on my way with a prescription for migraine meds. The pain never went away.

Wednesday morning I was getting ready for work when suddenly the most intense throbbing, stabbing, excruciating pain gripped my brain, permeating each cell and every membrane in my head. I flung myself onto the bed, pressing and poking every spot on my face, head and neck for some pressure point or way to diffuse the pain, to no avail. Yorkie, my baby boy, pressed himself tightly against my body in a distressed attempt to comfort me while I clawed my face, wailed in agony and thrashed around wildly. I was desperately seeking some relief from what was becoming quickly obvious needed immediate medical attention. It literally felt like my head was about to explode. I somehow sobbed through a phone call to my neighbor and she raced over to give me a ride to emergency. Each pulse of my heartbeat sent electric shock waves of torture through my brain. I was screaming in pain. She took me to the ER and I was given both a CT and an unsuccessful spinal-tap before a neuro-radiologist discovered blood in the frontal region of my brain scan. I was immediately ambulanced to Neuro ICU at a nearby hospital and given a contrast CT, regular then contrast MRI, spinal-tap and catheter angiogram during the next two whirlwind days. Two arteries were intentionally punctured during this process and I was mandated 10 hours of strict bed paralysis, not allowed to move a single muscle while I recovered from these risky procedures. I required constant eyes rolling back in my head narcotic shots to keep the pain at bay. My husband and mother rallied around me, all three of us completely terrified because each test was successively ruling out the more mild possibilities and words like aneurysm, stroke, brain tumors and death were whirling around my hospital room high up above my head.

Then suddenly Friday evening around 6pm the Dean of Neurology emerged from the drug induced mist before me and declared he had a diagnosis. I was shocked he could decipher the conclusion so quickly, used to the 3-ring circus of Chronic Fatigue Syndrome and Fibromyalgia. We listened to him give us the best case scenario that could have possibly come out of this horrible situation. I suffered from an extremely rare subset of Vasculitis called RCVS (Reversible Cerebral Vasoconsriction Syndrome), fitting the medical school text book definition to a T. I suffered not only one but at least two hemorrhagic strokes, luckily with no obvious neurological damage. No drooping eyelid or drooling face, memory impairment or paralysis with a lifetime of assisted living, or worse. The first word in the name alone was cause for rejoice, REVERSIBLE! He then went on to describe the treatment; steroids (yuck but I better shut-up and be grateful there is a treatment) for about 4 months and calcium-channel blockers for under a year with no residual aftermath and very little chance of re-occurrence. 

We just heard the words from the doctors mouth that hundreds of faithful voices had been pleading to God's ear these last few days, and I was not dying any quicker than the rest of us! He left the room and my husband and I stared uneasily at each other with a surprised if not quite believable glee as I watched the stress and tension visibly roll from his back, the light sparking back in his eye. Here I laid for two days, death repetitively and obnoxiously knocking on my door, watching the devastation this was having on my husband and mother through a Dilaudid filtered haziness, with so many questions and so much fear. But once again the grace of God was upon my life and it was spared, and not just my existence, but the quality of it as well. So as I sit here coming to terms with this journey, off of the IV pain drugs and out of the ICU, I have come to the conclusion THIS IS IT FOR ME, I have had it! I am marching toward a long and full life of nothing but amazing health, happiness and prosperity. I have paid my dues, worked through my karma, put up with more than my share, and I am done. Besides...I simply don't have any more lives to spare and its time to go bother someone else!

Thanks for joining,

This blog was originally published on 7/31/10, two days before I was discharged from the hospital.

Thursday, December 15, 2011

Chronic Fatigue Syndrome vs. Fibromyalgia

I had Chronic Fatigue Syndrome/ME. It was my first diagnosis, actually. Fibromyalgia was not mentioned until I sought out a second opinion doctor that recognized it's early stages. My first symptom was a strange paralysis in my right arm and hand. Then my tender points were through the roof. Those were her clues. But the fatigue was so crippling, so unbelievably consuming, pain was but a distant second place for top priority in my life. See I could not leave my house, make my bed, empty the dishwasher, take my dog to pee or do anything else within two hours before or after the other. So I learned how to do nothing, embrace my rapidly multiplying dust bunnies and picked up a voracious obsession with General Hospital I had forgotten about when I graduated from college and entered the "real world" six years earlier. At least they could put mascara on and go create drama in each others lives. I was jealous.

What I know now is there are two very distinct illnesses, CFS/ME and FM. Yes they are both syndromes, originating from an unknown cause. Yes they have a great many shared symptoms. But I was able to recover from CFS/ME and for me the difference between them is very clear. What hits you harder? Pain or fatigue? Therein lies the answer, in my opinion, as to which one has a stronger grip on your life. I went to a specialty clinic and took tons of supplements and massive amounts of anti-biotics, anti-virals, anti-fungals, oh you name it. Slowly but surely my energy returned and I was able to go back to work. That is when Fibro knocked me on my ass. See I had not been in as much pain because I was not doing anything. Once I started doing things, well I was a sitting duck.

I blog on Fibromyalgia, have an awareness campaign for Fibromyalgia, run a support page for Fibromyalgia. I was able to recover from CFS/ME, or more specifically, get it into remission. What I am left with is Fibromyalgia. But not everyone has the same experience. There is a wonderful woman who has written a beautiful book, How To Be Sick*. The author has tried everything under the sun and hasn't recovered from disabling fatigue and chronic illness. So she has learned how to accept her new life and find value and purpose despite her limitations, discovered and rejoices in the joy of what she does have. There are very different and specific ways to live with CFS/ME. They are not the same as managing Fibromyalgia. Many people and sadly plenty of doctors don't recognize this distinction. There is no one answer or miracle cure or fast fix for either of them, I have found. There are multiple levels of illness with a multitude of problems, complications, and hindrances individual to each patient. What I have seen with the greatest frequency is success when a person breaks apart every component of their life and puts it back together again in a realistic way they can live it.

Thanks for joining,

Wednesday, December 14, 2011

Perfect Perspective

Acceptance. Surrender. Release of control. Oh these are virtues I struggle with accepting in my post-fibro world. Unfortunately I was terrible at respecting them before I got sick so didn't already have those neuropathways well formed and familiar. I was raised to do one thing, persevere. Push through the struggle, work through the challenge, rise to the occasion. Well that did me NO good whatsoever when I got sick, for the harder I pushed the deeper I fell.

I recently went through an experience that perfectly personifies the madness of this entire life-cycle. I scheduled a carpet cleaning. I scrubbed my house from top to bottom in preparation, moving anything but furniture away to clear the path to clean. My errands were all set for the day and I woke up early, at the ready to leave my house with my dogs the second they arrived so the carpet could dry in peace. But the cleaners never came. I threw a fit, so bitter and angry about all the work I did to prepare. It hurt me! But the carpet cleaners did not care. Nobody, really cared. What on earth is the big deal? A little annoyance was permissible, but flipping out and driving myself into a terrible flare was extremely over reactive. Unfortunately being me, that is exactly what I did.

Two weeks later I was ready to tackle the beast again, for my carpets had not gotten any cleaner in the meantime. I cleaned a little, made my husband move everything out of the way and didn't give one rats woo-ha about padding wet white socks or puppy paw prints across the damp yarn. And guess what? My carpets got cleaned. The world did not come to an end, earth didn't cease to orbit off its axis or flare wasn't invited to viciously ensue. My carpets simply got clean. I was minorly annoyed I had to run the heat and keep the windows open to get it dry in the wet rain, but whatever. I recognized a marked difference in my attitude between Carpet Cleaning Incident of 2011 Part 1 and Carpet Cleaning Incident of 2011 Part 2, and that made all the difference. So I shared my joy with some friends. Upon expressing how I settled and wasn't so uptight about everything being "perfect" they reminded miss fancy pants over here I was not nearly that perfect to begin with. I just wanted to be and worked tirelessly to obtain it.

Thanks for joining,

Tuesday, December 13, 2011

Thank You, Mr. Cosby

When I was a teenager my mother and I got into a voracious argument. Inch for inch both equally stubborn and bullheaded, we were driving in the car surrounded by tense quiet. My mom pushed the scan button on the radio with a flourish and it silently flipped through a circle of static stations like an old time picture show. We fumed, glared and snorted fire at each other in silence while the signal struggled to find an air-wave which would produce sound. Long forgotten about in the simmering and stewing anger between us, suddenly, with no warning, classical music filled the car at top volume. Raging violins and furious wind instruments took up all the space previously occupied with discord. Surprised, we looked at each other and burst out laughing. What was funny? Who knows, but it broke the ice so we could get on with our day.

Laughter is an important tool. It has a little benefit attached to it, a sip of "perspective". And it is never as important or necessary as when experiencing heartache or tragedy. I felt it for the first time when I was 13 years-old and saw Steel Magnolias. There is a heart wrenching scene where anyone in the room, if they are indeed human, must be sobbing like a baby who lost their candy. Then something really funny happens and it is that special kind of tear that chokes from your soul, the beginning of a laugh. And the pain of laughter forcing its way out the sobs of your heart, well, it heals.

People ask me why on earth would I name the support page on Facebook the loyal readers of my blog chat on The Fibromyalgia Funhouse. Fibromyalgia is NOT fun, I have been told. And I could not agree more. But is a fun house? Traditionally it is not a place to just go have fun. It can be weird, creepy, scary, disturbing or just plain gross. It is a house of illusions, and a foray into deciphering truth from trickery. The objective is to maneuver through the distorted reality and survive the unpredictable, hopefully with a grin across your face. Well for goodness sakes, if that does not describe Fibromyalgia then I don't know what does! Please keep sharing and laughing and learning and caring. It is how we grow past the imprisonment of this illness and often that first chuckle, the little giggle at the sheer preposterousness of it all, is the first step there.

Thanks for joining,

Monday, December 12, 2011

Pesky Patient

I am a self-admitted pain in the behind patient. I did not used to be. I would go to the doctor when the flu lingered too long or I would catch the occasional strep throat. Saw my female doctor once a year like clockwork and my health insurance didn't have any cause to pay attention to me, for I was one of those patients they made money on. Young and healthy. WELL let me tell you what an icy cold bucket of water to the face my acceptance of modern medicine was when I got sick with something they knew nothing about. I was disabled and totally freaking out, desperate for somebody to take a look at pathetic sobbing me trying to explain pain and fatigue that is quite frankly, unexplainable. And not only understand me, but help me as well! It just was not happening.

So I became my own best advocate. Years have passed and I am much improved, certainly not disabled anymore but nowhere near able to hold down a full-time job outside the home. That is my litmus test for normal and healthy. But I am like a zipper, up and down and up and down. About the only thing that is predictable these days is a guarantee I will freak out if one single thing goes wrong, no matter how minor. And the second thing that goes wrong? That manifests a massive catastrophe that continues until I am screaming and crying and need medication to calm down. That is just not right, for I cannot function in the world at large, let alone stand to be around myself when I get like that. 

So hi-ho, hi-ho, its off to the doc I go... I made an appointment with my psychiatrist. If I have learned nothing else from all my health woes its to lean heavily on my doctors to help me get my symptoms managed. Because then and only then can I manage my illness and more importantly, my life. I explained my symptoms and we chatted. He knows me well and is now prepared for my nosy questions and challenging inquiries, along with long lectures on health disorders far beyond his specialty. He believes I have a serotonin problem. I was taking a supplement to increase the feel-good neurotransmitter and stopped, trying to trim any possible fat from the family budget. Get back on it, he says. Call me in a month if you are still angry and aggressive and we will look at other options. I leave thankful he did not put me on yet one more prescription medication. See I have a whole list of weird health issues I am trying to decipher. Like half a dozen "unrelated" problems. And I am searching high and low for information, doing as much research as I can. Slowly but surely I am seeing patterns emerge. I will keep on piecing it together and seeking wellness until I figure out the point it all stems from. I believe then, and only then, will I find my best health possible. Discovering my personal root cause of all this sickness.

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Friday, December 9, 2011

Happy 9th

Today my husband and I celebrate nine years of wedded bliss. He took the day off work and we planned on a relaxing trip to the city art museum. A Cezanne exhibit, and other masters of post-impressionist work, is here on installation. We commenced our day with a trip to the doctor to see about my now 5-day migraine. I got a shot and was given a prescription and we set out to enjoy our anniversary with an air-conditioning cooled day leisurely perusing famous art. But first there was the big fight over how fearful of the next thunderbolt to hit our lives we are, how my headache is making him feel that after so long, and so much struggle, I was just going to get sick all over again. We talked about how badly my disease and the choices we had to make because of it have leveled us. He poured out his fears and remorse and I hurled at him my determination for a better tomorrow and undying love. We talked it through and calmed ourselves down, deciding to venture on, go see that drop of culture so badly missing from our daily lives. 

But as we approached the museum we discovered it was closed! I live in a major metropolitan city and the museum thinks it can take both Monday and Tuesday off? Preposterous! So we dejectedly piled ourselves into the truck, heading back toward home, not really sure what to do with ourselves or how to make the day fun and special. And then I saw it...looming ahead in its city-block long, chipped-yellow-paint glory...Mo' Money Pawn Shop. We went in and meandered down aisle after aisle of glimmering and sparkling gems and precious metals, purchased with so many hopes and dreams and hawked in desperation. I speculated about the story behind each piece, what tale it told. We enjoyed admiring beautifully engraved pistols and skipped past rows and rows of appliances, electronics and tools. 

Tumbling into the blazing sunshine we were laughing and back on track. The experience had lightened our load and revived our perspective. We went on to enjoy a wonderful lunch (where I discovered a drink called Retail Therapy that alone made the whole experience worth it) and spent the rest of the day shopping and relaxing. It was fun, mellow and low key, but the biggest point of difference is that we did not let our mood or fears or a thump in our plans ruin our day. We dusted off that long-forgotten virtue of spontaneity that has been hidden back in the deep, dark recesses and forged on to make year number nine better than ever.

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This blog was originally published on July 27, 2010. Looking through the eyes of the past I now know that "migraine" was a stroke and the biggest health scare of my entire life was going to happen the next morning. This post is like an ironic kick in the gut. I used the word "thunderbolt" like I had knowledge of the future.

Thursday, December 8, 2011

Learning To Live

I remember the feeling I would get when I was in junior high and we would drive past the high school I would one day be attending. It was this big scary intimidating place I could not possibly imagine myself. There were seniors there and people drove themselves to school. It had a football team and cheerleaders and everyone was so big and independent. By second semester of my sophomore year I had the place down like the back of my hand. And by then what I was really concerned about was college. Oh everything we did was to prepare for college. The tests would be harder in college, they told us, the requirements much more rigorous. I will admit, my first few weeks I walked around in a daze. Things like the student union and a really massive library with different floors for different subject matters blew my mind. I thought I would eternally be a little fish in a big ol' pond. But by senior year I was finally convinced I was not going to flunk out. I even knew the place well enough to park at the gymnasium for step aerobics and make it all the way to the art building eight minutes after class was over, half a mile on the other side of the campus. A small grove of parking meters nobody knew about and lovely Rita really never checked existed just for me. 

Of course by now that thing called "real life" they had been preaching about the struggles and toils of for the past four years was my biggest concern to date. How on earth was I going to make it there? It was not nearly as cut and dry as staying in school for 22 years, floating from one institution to the next like I had been told to. This was up to me, the true test. Did all those teachers for all those years teach me anything? I tripped, stumbled and fell a plenty. But eventually one day I found myself in a fancy suit with important stuff in my brain, presenting to and collaborating with vice-presidents and regional executives of the Fortune 500 company I worked for. I was climbin' my way up that ladder and the sky was the limit! I was ready set and on my way...

Then the biggest challenge of all, bigger than every single struggle over my entire life all rolled into one, landed at my feet one day. And no matter how hard I tried I could not kick it away! I hid from it, I cried about it. I slept a lot and got drunk to forget. I pretended it didn't exist, even saw the doctor about it. But there was no K-12 with a cushy four years in college accompanied by a corporate structured career path. No, what was ahead of me was akin to drilling a hole through the center of the mountain to get to the other side, and I felt like the first person to ever do it, too. But if I had to keep walking up the side of that mountain, I knew it was going to kill me. So I did what I had always done. I educated myself, tried different things. I saw many doctors and cried my days away. I cursed my sleepless nights as I watched the corporate ladder I was climbing break, wincing at the slow and painful fall. I tried to convince myself it was all in my head and if I just thought positively enough it would certainly go away. It didn't, though, no matter how hard I beat myself up. Yet somehow, I am still not sure how, just like all those times before, I found success. This is not the kind of success that earns you degrees, a big paycheck or fancy company car. Its not the kind my church or friends or family recognize for what it truly is. It is not the kind even my doctor really understands. It is a joy that is all mine, for it was taken from me and I had to learn how to do it all over again. Learn how to live, that is.

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Tuesday, December 6, 2011

A Little Box Of Anger

I was standing in my bathroom yesterday, putting lotion on and thinking about the last time I was hospitalized for Pancreatitis. It was in 2007 when I was still living in San Francisco. I had gone back to work only a month before, after 7 months on disability. But working was too much for me. I was in severe pain and living on Percocet, completely panicked and freaking out about my reality. My pancreas said, "BOO" and stuck me in the hospital for six horrible miserable pain filled days. Unfortunately I had awful communication barriers with my foreign doctor and she communicated to everyone on hospital staff I was a junkie. The pain medication she prescribed allotted me little relief from the acute agony of my pancreas digesting itself. I cried most of the time I was in there from epic amounts of pain and confusion, for I had no idea why I was being treated so poorly. This was my fourth attack, but my first with Fibromyalgia. I can only imagine that is what hell is like.

So standing in my bathroom four years later I remember this, and got so pissed at that doctor! I became enraged at her malicious untruths that a Fibromyalgia patient trying to work retail to feed themselves was a junkie. And then I remembered what holding on to this kind of stuff does to me. It makes me grouchy and bitchy and miserable. Eventually, if I make it important enough, it will give me a flare and make me quite sick. Deciding I was not in the mood for another ride around the circular file of madness I remembered my choice. The two thoughts conflicted in my brain as they danced around the boxing ring glaring at each other, wondering who would win. With incredible purpose I grabbed that little box of anger floating out in front of me. I acknowledged I already moved past the phase in my life where doing anything about this was long over. It took everything I had but I took that anger, saying a little prayer of hope that doctor is still not treating Fibro patients like junkies, and released it. It flew away in a flutter and I had my day back. 

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Monday, December 5, 2011

The End Of My Rope

I have met some incredible people since I opened up the inner ramblings of my brain to anyone with an internet connection on this here blog. People that give me strength and courage, and amaze me with their ability to endure and overcome endless adversity. One of them has decided to open up and share her story with us. She was at...

The End Of My Rope

I was at the end of my rope, nothing left to hang on to. I was going through a painful divorce and pain had taken over my life. My days were mainly spent in bed. My children would come home from school and have to sit on the bed with me just to spend time with me. I felt completely useless, like I was a burden to everyone around me, especially my children. No one understood my pain. No one understood what my life was like. I felt so alone. I had struggled with depression most of my adult life. I had PTSD from some bad experiences along with my constant pain and feelings of inadequacy to my husband and children. This was the beginning of my second divorce, this one much more painful than the first. My first marriage was to my high school boyfriend. We were young and naive, it was never meant to be. But this time I had married my best friend, this time was for life. He ended up having an affair. Said he couldn’t deal with my illness, it was too much for him. He knew about it going into the marriage, but said he didn’t realize how hard it would be. That was heartbreaking. It was nothing I could work on, nothing I could fix. My diagnoses were Fibromyalgia, Ankylosing Spondylitis, Sacroiliitis, Degenerative Disc Disease in my lumbar and cervical spine, ruptured disc at L4-L5 and a pinched nerve at L5. I DID have a lot of pain and my doctors wouldn’t give me anything to help with my pain because of my age. I am in my early thirties. I couldn’t work, couldn’t even grocery shop anymore. So when he left, I felt I had no one to help me. My mother lived 45 minutes away, my sister lived in another state, my brother was in the Marine Corps. My children helped as much as they could, but there were some things they couldn’t do. I already felt guilty because they had to do so much. Children aren’t supposed to have to take care of their parents, not at that age anyway.

Sunday, March 6, 2011 was a particularly bad day. My children were gone to their father’s house. My soon to be ex-husband and I were arguing. I had lost the love of my life. I saw no future for me other than pain. What kind of life could I provide for my children? I was going to have to move. I couldn’t work. My doctors agreed that I couldn’t work but we were yet to convince the Social Security Administration of that fact, so I had no income. My child support certainly couldn’t pay the bills. I felt that everyone would be better off without me as a burden. I had had enough of this life. It was just too hard. I wrote letters to my children, texted a couple friends about how much I loved them, and swallowed 24 Ambien. I immediately knew I had made a mistake, yet in a way still felt it was what I wanted. I let a friend know what I had done and an ambulance arrived shortly.  I don’t remember much after that. 

Even after my overnight stay at the hospital and 3 days in a Crisis Stabilization Unit, I still felt I didn’t want to be here. But in time that feeling faded. If not for the support, love, understanding, and advice of some wonderful ladies that I had met in an online support group, I don’t think I would be here today. I had some obstacles to overcome, which led to huge amounts of stress. I was going to have to move from my home but couldn’t afford rent. My sister and brother in law offered to let me move in with them until I could get on my feet, but that would mean moving myself and my children to another state. That would be a huge decision to make. Not knowing anyone but them, and being a burden (oh how I hate to feel like a burden). But in the end, that’s what I did. I packed up all our things, put them in storage, and moved in with my sister. I signed up for state assistance for insurance, food and housing. Some things didn’t go as smoothly as I had hoped. Lots of paperwork and waiting periods when changing states. But I only had to stay with my sister for one month before an apartment was ready to move into. We got all our belongings out of storage and now it feels like home. I still have struggles, of course, with money, pain, and even loneliness at times, but I can honestly say that I am happier now than I have ever been. My children adjusted well to the move and love their schools, I love the area, and my sister and I are closer than we have ever been. 

I know there are others who have been in this dark place. I wanted to share my story to let you know that you are not alone. It is okay to feel whatever emotions you feel… sadness, anger, loneliness… But there is hope. Even if all you have is the online friendships of some people you have never met, you are not alone. 

Amanda F.

Thursday, December 1, 2011

Rock Bottom

Rock bottom is an adjective or noun, depending on how it is used, that means "the lowest possible level." Yes it can refer to the first layer of rubble in a building construction project, but is more commonly used by those swept up in the madness of life. Be it addiction, lifestyle, illness or many other all consuming calamities, rock bottom is an ugly place people find themselves in for a variety of reasons. It is that horrible position in life when it gets as bad as it can get, cannot be any worse, the bottom of the trenches. That is what it means to me. And I have found myself there more than a few times since becoming ill with Fibromyalgia.

Hitting my lowest low was violently painful. The first one was a total emotional breakdown with anxiety spasms and a deep desire to disappear off the face of the earth. I had pushed myself too hard, hoping and praying if I ignored this stupid problem I was having it would go away. No doctor could tell me why I was sleeping 10 hours a night and waking up exhausted, why the pain in my body was so severe I cried when I stood up. Why I could not remember how to spell my father's name or would get confusingly lost driving home from work. They gave me pills for depression and a pat on the head, and those were the nice doctors. What it took to rebuild from that one, oh it took a lot. Time, medication, therapy, psychiatry and actually getting some deep sleep for a change. I put one painful foot on the bottom step of the ladder and hauled my pathetic self slowly up and out of the pit of despair and panic. Somehow along the way I learned to accept my life was different than before. And being the consummate type A that I am, I set out on a quest to figure out how to get it back.

I have hit bottom a few times since then, none as all encompassing or terrifying as that first breakdown. And what I have found is when it gets bad enough, all my choices seem to be stripped from me and the result is completely unacceptable, I can still decide. I can choose to be miserable and take what I am given. I can choose to keep flailing and meekly fight it, making myself much sicker. Or I can choose to change. Figure out how to do it and redefine my circumstances. I did not know I held this power until I was left with no other choice but to use it, and it was not easy. But over this last year I broke down a' plenty and had to pick myself up by the bootstraps and persevere. I changed a lot of things about my life. I was having rage episodes and gained a lot of weight. To lose both the weight and the rage I knew I had to start exercising. Oh it hurt so bad in the beginning! I had to up my pain meds and take it very slow, but I have lost 30 lbs. and stopped flying off the handle half-cocked for no good reason. Lately I have been swallowed up by the depression and self-pity monster. Guilt consumes me and victimization engulfs me. And once again I must choose. Does anger and helplessness keep eroding away at my life, or do I stand up, shout "No more! Its my life and I want it back!" and then set out to make that happen? Gratefully I have done this enough times to know what the answer is...

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Tuesday, November 29, 2011

My Friend Alexander

There is a children's book called Alexander and the Terrible, Horrible, No Good, Very Bad Day that was one of my favorites as a kid. If you did not have the pleasure of reading this book as a youth, and as an adult have not had the joy of sharing it with your children or grandchildren, I would recommend picking up a copy. For if you don't you are surely missing out. The story is about a little boy named Alexander who woke up one morning to find himself quite grumpy. The day keeps getting worse, every little thing going wrong or screwing up or becoming messy, dirty and complicated. The people in his life all compound these problems and create another source of irritation. His solution? Move to Australia to get away from his misfortune. Its a cute reminder that a bad day can be just that, a bad day. And when you wake up the next morning everything is okay again.

I had not thought about Alexander in quite some time. My brother was on the phone telling me about his bad day when I remembered the book. Of course my little brother remembered it as well because he inherited his copy from me. I thought about poor little Alexander and how lucky he was. For he gets to wake up the next day, or worse case scenario a few days later, and the bad juju complicating his life is gone. Mine usually lasts for a week, at least, and honestly has been going on for six straight years. Normal people, normal things, normal life, I just can't deal with it anymore!

Yesterday I was supposed to get my carpet cleaned. The spots are so bad I am embarrassed to have people over. So I stayed up the night before until 3AM cleaning and moving furniture out of the main ares. I was all ready with a day full of activities, dog friendly I might add, to keep us out of the house for a few hours so the carpet could dry a bit before we walked all over it. So I sat here during my "window" from 9-12, ready at the drop of a hat to throw my computer in my bag, snap leashes on my dogs and go. Finally around 1:30 I get the message they are not coming due to emergency flooding. Re-scheduled for this morning, last night around 8PM the flare hit. And I knew there was absolutely no way I would be able to do this all over again the next day. So I got MAD, furious, angry. Sobbing like a 3 year-old as I washed dishes and felt my body slip deeper into pain and hurt. Why is it so hard to exist in the outside world? Why does something as minor as the carpet getting cleaned a day later put me in bed for a week? And the biggest one of all, lying deep down at the bottom of all the others; why am I sick, why me, why why why? I need to know! So Alexander boy I feel you today. But no offense to Australia, Santorini is calling my name.

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Monday, November 28, 2011

The Carpet Cleaners

I have been amazingly forthright with you all about my complete lack of housekeeping skills. Or more specifically, my complete lack of an interest in flaring my pain so I can have a clean house. Its easier to keep it straightened up than it is to clean it. Vacuuming hurts my shoulder, dusting makes me all nasally and sneezy, and cleaning the bathroom just sucks. And unfortunately, I cannot afford a house cleaner. I grew up with a free-spirited mom and OCD step-mother, finding my balance in adulthood as a "kinda" clean working wife. My house was hardly perfect but nobody was calling the health department, either.

Then I got sick. I could barely empty the dishwasher or make the bed. I could not work, grocery shop, do laundry or pretty much move. I sat and watched layers of dirt and dust pile up all around me. The beige carpet (why do apartments always have light beige carpeting?) turned grayish because the vacuum was the last thing I had the strength, or interest, in running. Years passed and I watched it build, dust bunnies rapidly multiplying and gobbling up my decorative accents. My house became one where I could not invite somebody over spontaneously, for it was downright embarrassing. I grew to accept this as a limitation of my illness and thankfully my husband told me repetitively he did not marry me for my housekeeping skills. Thank God.

The apartment complex I live in cleans my carpet every year when I sign a new lease. First time in 15 years of renting so needless to say that is quite thrilling. So last year I scheduled the clean and we moved everything out of the walkways and main areas of the apartment and golly gee gosh, I got my carpet cleaned! But two weeks later it was dirtier than before. This made me mad. So last night we were moving everything out of the walkways and main traffic areas in preparation for another cleaning. Except this time I was vacuuming. That made me realize I had not vacuumed the year before. Well no wonder my carpet got dirty so fast, the cleaners only removed the top layer of dirt a vacuum should have already picked up! I looked over at my husband once I realized this and said wow, I really am improving. Last year not only could I not vacuum, I didn't really care. This year there is a bag full of white socks sitting by the front door and I am determined to keep the carpet clean this time. At least for the first two weeks...

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Friday, November 25, 2011

Time To Get Going

I stumbled upon this pearl of wisdom and raised a cynical eyebrow. It spoke to me. Was exactly what I needed to hear at that specific moment in time. Loud and clear it blasted the rubbish in my mind and blew through the fog. See I wasn't doing very well, the frustration and negativity of being sick consuming me. I was just so darn angry all the time. At everyone, everything, nothing specific but all of it in general. I was bitter and sorrowful my life had been wrought with so much illness, scrambling to keep my head above water since before I could remember. I reflected on the normalcy I sacrificed as I watched my friends get promotions and have babies and buy houses while I argued with yet one more hospital collections department to accept my meager monthly payments against an insurmountable bill. I was one unhappy girl and felt slated. 

Then the pounding headache and sharp amethyst pain of a flare woke me up the next morning. "Ahhh," I grouchily mumbled to myself, "so this is why you have been so unhappy." Something happens to me when I get Fibro-socked. Something chemical or mental or hormonal, who knows. But I get so grouchy and negative even the Grinch who stole Christmas gets jealous of my attitude. Then I get mad at myself all over again for getting mad at myself the day before when I feverishly searched for a source of my sourness. I spent the whole day blaming me for my despair and bashing my brain against the wall trying to figure out what causes it, how to make it go away and stop it from ever happening again. 

But this is just the illness. This nasty and confusing and painful illness I have lived with for over six years. I should know by now there is no magic solution to get me through a flare. There is medication and sleep and time. There is managing it so I don't create erupting volcanoes with every person I hold near and dear in my life. There is isolation, my best friend. A few days later I woke up and was happy again. My body did not throb or feel like it forgot what sleep was. Its easy to move on, get to the next chapter when everything lines up right. The lesson comes in learning how to not go back to the beginning of the book just because the paragraph I am stuck on is stupid, painful, confusing and does not seem to be going anywhere.

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Tuesday, November 22, 2011

A Woman To Be Remembered

The world lost a woman yesterday.
A boy lost his grandmother, three people lost their mother and a man lost his wife.
This woman was a pistol, tough and strong and a force to be reckoned with.
I grew up with her tails of adventure, living overseas while young and newly married, her husband in the military.
I learned of a day in 1929 when this girl took a shoe box of money she was saving to the bank, to be turned away empty handed, for her money was worth nothing.
I recall dramatic and gory stories when she worked as a nurse, the night shift in the E.R.
I ate many holiday dinners at her dining room table and swam many summers in her swimming pool.
I never shared blood with this woman, yet she is the person who gave me one of my mothers.

And she too suffered from a silent illness, Lupus.
An illness of shared compassion to us Fibromyalgia patients.
But she braved herself up and raised her family, one of her daughters developmentally disabled and by her side every single day.
She was a woman of courage and strength and integrity, a beauty from a bygone time.
Blessed with a long life, part of her will go on.
In the friends she loved, each child she created.
Birthed and raised and taught right from wrong.
Each life she touched, I.V. she poked or Special Olympics she attended to watch her daughter win gold and silver medals.
That is what goes on.
The memories her loved ones share when brought together as they laugh through their tears, recalling something they did that made her really really mad.
The animation and times of a person with a life well lived.
Respected and remembered.
Rest in peace, you will be missed.

Friday, November 18, 2011

The River Wild

This blog was originally published on 7/25/10, the day after my first stroke. I did not know it was a stroke at the time and just assumed I was having a hormonally induced migraine, even though it was the worst headache of my life. I had such a simultaneous rush of energy I believed I was healing from a 5 year journey with CFS & Fibromyalgia and eagerly anticipated feeling like a normal human being again. It is very interesting to look back with the wisdom of the future...

My hormones are going wild, but not in a bad way, necessarily. I have not felt this much energy in years! Unfortunately I have also had what is vacillating between a raging migraine and horrible headache since Friday afternoon. I will have to make an appointment to see the doctor if I wake up with it again manana. I can't help but think they are related. 

I have had a rush of functioning coming back to me in the last few months, as though someone has been chipping away at a dam for a very long time and holes are finally sprouting up everywhere. Water is shooting through the holes like its a cheese grater. Pretty soon it is going to burst in a flurry of intense flooding waters, white-tipped with foam driving it forward. It will fill the dry and dead riverbed that has appeared in the wake of the abrupt departure of the life I used to live. The question I am struggling with now is how do I keep these springing leaks and rushing floods of function from wreaking havoc in my carefully re-constructed life?

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Thursday, November 17, 2011

The Senses

There are five classic senses most humans are blessed with. See (look), taste (eat), hear (listen), touch (feel), smell (sniff).  They are our internal physiological responses to the outside world. As a collective species we group our experiences into categories of sensory perception. If I eat moo shu pork and you eat moo shu pork chances are it will taste pretty much the same to both of us, and everyone else sharing our general circumstances. If a baby cries you and I are likely to hear a similar sound. And we will both want to do something to make it stop, for that needy wail has been carefully designed to attract attention. I can walk into a room and say, "It smells like rotten eggs!" and you can agree or disagree with some accuracy since we both have an identified scent in mind.

But there is one we are are having a very big problem with, and that is touch, or feel. A certain class of individuals are rapidly multiplying throughout the world with this same problem. Millions upon millions of people are complaining about the same feelings, experienced the same way, over and over. Allowing small variances for individually, of course. Fibromyalgia is darn near becoming an epidemic, with worldwide numbers reaching as far as 400 million people*. Yet nobody knows what medically causes it or why we are the ones to get it.

400 million people. That is a lot of people that feel what you do. Every time your body goes off half-cocked and your mind follows suite remember that there are 399,999,999 other people in the world that can kinda relate, at least on some level. They too are raising their children and working their jobs and going to school and playing with their grandchildren. Many of them push themselves to burnout, present company included. The crash of all the senses that finally takes you under, jammed up and overflowing because of all that darn pain stamped across the central nervous system. But I do believe we are getting somewhere with our awareness efforts. Every single time you open your mouth and utter the word Fibromyalgia you further this cause. And if you don't feel up to it that day, that 's okay too. But we will keep fighting, and winning, until we one day get the recognition, respect and results we deserve. Nearly 20 years since the World Health Organization recognized Fibromyalgia and gave her an individual ICD-9* code and the patients are still doing backflips to prove what they feel is real. That is simply unacceptable.

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Tuesday, November 15, 2011

Work Work Work!

I am frustrated. I realized yesterday what I am doing to myself and logically wondered how I could be anything but frustrated under these circumstances. Before I got sick I used to make myself a "to do" list a mile long, and expect to accomplish everything in one day. I never did, and it would roll over into the next and into the next and on it would go. So is life. Well I got sick, broke down, got right back on the horse and have been pushing myself one step further, always, ever since. I will ask myself when I am in the madness, feeling the walls caving in, "Am I doing too much, expecting too much, pushing too hard?" Sometimes I have to stop and reassess because yes, I have pushed myself too hard! My expectations are unrealistic and my body pays a steep price. 

But for every time I have pushed myself past the brink there are a dozen times where I have not. That challenge, high expectation I set for myself, is what has propelled me forward in managing the beast, the Fibro beast. But it has also kept me back, because that is the "old" way of doing things that got me so deep into this whole chronic illness mess in the first place. There is only so much demand one mind, body and soul can take. So I am frustrated because things are not jiving. I don't have enough hours in my day. And yesterday when I was complaining about this it hit me like a frying pan to the face out of nowhere. I am doing too much, expecting too much, pushing too hard. 

I sit under a blanket of tremendous guilt that I don't work, bring in an income. I watch my husband weary himself to the bone to make ends stretch together. But running a house is work! Cooking is work, cleaning is work. Paying the bills, grooming the dogs, doing the laundry. Work work work! Successfully managing a chronic illness is tons of work. Writing a blog is work, running a support page for Fibro patients is work. Getting a "your not crazy, the world is ignorant" patient-empowered awareness campaign up and going is work. And writing a book is tremendous work! So even though I don't get paid for doing these things, yet, I am working very hard. In the eternal struggle we endure, how to live a productive life in a sick body, I decided to lighten up and think of myself as in "college" right now. I am working my booty down to the bone so one day I can be successful. I just all too frequently forget to remind myself how successful in managing life I already am and that my booty has been worked to the bone before and really just needs to rest. I think today I am playing hookie.

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Monday, November 14, 2011

A Purpose Through The Pain

Oh Mark, you tricky bastard! I never heard this gem of his before and stumbled across it as I perused the internet. And I got goosebumps, rushing through my body, shivering up my spine. I got it instantly to the deepest depth of meaning. See I was just telling my husband how hard of a time I have relating to the world at large. I only identify with people that have suffered, those possessing a depth of soul, the heartache of consciousness. He challenged my prejudice. "When is somebody's struggle valid enough for you? Isn't that what you get all upset about people doing to Fibro patients? Judging your suffering as not real enough?" Yes, he had me, I sure did. Hypocrite! I called out and pointed to myself. 

Many many many people ask me how I got "better" from Fibromyalgia. I don't have an answer to that question. I have 75 answers to that question. And I did not get better, I got it managed. Every single aspect of my life is different now compared to how it was before I got sick. Everything has changed, all of it, todos. I am fundamentally a different person at my core. I eat different food and drink different water. I sleep differently and stress and cry in a whole new way. I do laundry and set expectations like I never did before. I pray with a different mindset and work and exercise with it too. That is what it has taken for me to regain a quality of life worth living.

But if I get off my little disk of "managed" floating high in the sky I body-slam right back down to the suck of Fibromyalgia. And it all crumbles away, washing down the big drain of pain and anguish sitting behind every door waiting for me to stumble so it can pounce. I must live very carefully to keep myself afloat. And when I fall it is a very hard climb up a very long ladder to get back there. But through this struggle, sacrifice and sorrow I have found my way. I discovered my divine purpose, tapped into my heart and found the sap of my soul. Through imprisonment in a pain I never imagined was possible I discovered why I was born. And that discovery set me free.

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Friday, November 11, 2011

Love & Marriage

Being sick has been very hard on my marriage, as it is for most folks that are chronically ill I assume. I got hitched when I was a healthy and vibrant 24 and thought we would easily skip off into the sunset of happily ever after. Buy a house, get a dog, have a baby. Do those things everyone else in the world seems to do. But first we needed our great adventure so we moved to San Francisco. And a great adventure it was! But on Thanksgiving three years later I was in the hospital, watching my husband eat turkey dinner from the cafeteria and giving my thanks to God I survived a very severe pancreas attack. After eight days I was sent home and jumped right back on that train of great adventure. That was how I was raised, to persevere, forge ahead and keep going no matter the obstacle in my way. Fall off a horse, you immediately jump back on, right? 

But two months before my fourth wedding anniversary I started having symptoms no doctor could diagnose, no blood test or imaging would confess. Life as I knew it slowly swirled down the rabbit hole as misery and sickness overtook me. My husband kept me together, from falling completely apart and blowing my life to smithereens in the depths of my despair. The personal cost he paid was high but that man meant the vows he promised me on our wedding day and by my side he stood. His faith in me, that unwavering devotion, gave me strength to cling to as I scoured for health. I searched high, low, under every rock, behind every tree. I foraged, hunted and scrutinized the world (wide web) over for a way to get better. I could not accept this no treatment no cure junk the doctors were telling me. I could not live like this for the rest of my life. It was maddening.

Years passed and I slowly started improving and gaining stability. And my husband fell apart. See he had been holding everything together for both of us out of sheer necessity. But because of my psychotic sickness spewing all over our lives he had lots of feelings, too. Feelings I could not handle when I was really sick and sleuthing for my own sanity. But once we were out of "crisis" mode his dam burst and those compacted and rotting feelings deep inside him rushed out, stood miles high between us. I had to get right in my head, for he was going down fast and it was of course all my fault, I blamed like it did anyone any good. So I learned how to listen to him and try not to own his rage. I encouraged him to talk about his feelings. I heard him tell me he was mad at me for getting sick, with more guilt in his voice than I ever thought possible. Hell, I was mad at me for getting sick, why wouldn't he be too? And after a few years of that we finally reached our balance. Yes I am still sick, he works very hard to support us and life is not peachy keen. But sometimes he looks at me and tells me I am the strongest person he knows, having survived pancreatitis, CFS, Fibromyalgia and strokes. All I can say back to him is I did not have a choice, but he did, and he chose to stay. That easily makes him the strongest person in the room.

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Thursday, November 10, 2011


I have just done something so extremely liberating I can hardly stand it. I don't know if a woman has felt freer than I do right now, since the first ERA fore-mother took off her bra and burned it! See Fibro has made a lot of changes to my lifestyle. At first it was very physical, these changes. I was in pain, could not work, cook, clean or do anything of much use. Chronic Fatigue Syndrome/ME made simply taking a shower more than I had energy for. Emptying the dishwasher was my exciting afternoon event. Through an odd combination of acquiescence and war I have moved past that disabled state. Flash forward six years and I will have to say the Fibro I have now is a mere glimmer of the Fibro I had then. Thank God.

So now that my body is out of immediate fight or flight mode my brain is wigging, morphing. I was always a social girl. Only child until the age of 12, I spent a lot of time around adults. I had lots of friends in high-school and college. Working intimately with the general public for over a decade rounded this out. Face to face, 4" apart, I slathered on face cream and swiped on eyeshadow. I talked my way through thousands of encounters with the throngs that swept through downtown San Francisco. I was a people person. Bonafide, verified, through and through. Then all sorts of strange stuff started happening to me and I got sick. Severe trauma and pain stamped one too many times on my central nervous system, giving me Fibromyalgia. The world ceased to be an adventuresome place as constant agony overtook me; mind, body and soul. All I knew was pain. All I felt was hurt. I had to shield myself from the world, avoid it, use with caution. This retreat was subtle, but after all this time I am starting to become aware of the extent it has truly changed me. 

I can hardly stand people, they are difficult and demanding. I rant and rave about technology like a 90 year-old resistant to change. The phone ringing makes me crazy. I get overwhelmed easily. Basically I want to live solitary, undisturbed, so I can indulge myself in writing for days on end, only resurfacing when I needed a break and some amusement. I believe I have become anti-social! Today, in my final act of acceptance that this is what I need right now to continue improving my health, I turned off every ringer in my house, muted the answering machine and put my cell phone on silent. With a smile on my face I did this, my equivalent to burning that darn bra.

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Monday, November 7, 2011

What If

Let's suppose I tell you about something that kinda happened this past weekend. I say kinda because nothing else but me freaking out actually ever happened. On Friday night my husband and I went to Costco to exchange a package of bread. I did not bother to check it last week when I bought it and half of one of the loaves was missing. So we are in the parking lot and he is between aisles, about to cross the main entrance. Well he sees a spot on the other side of the entrance and slowly drives towards it. A car enters the parking lot and is coming right at us. A big ol' honkin' white Cadillac with the lady from the Wendy's "Where's The Beef" advertising campaign driving it. Remember her, the one with the big bun on top of her head? Yeah, well she is careening slowly towards my passenger side. But my husband does nothing. He does not stop, does not even accelerate. I am screaming at him to DRIVE! GO! He slowly keeps scooching into the car heading straight to t-bone us on my side and does NOTHING! I am screaming DRIVE DRIVE at the top of my lungs and not understanding why he is still inching into this accident! Seriously, what is he doing? He has not even honked! He slowly passes and we don't hit because Where's The Beef stops her boat so we can cross.
Oh my dear husband, feel sorry for him, because at this point I have seen my future and am screaming ballistic. Like psycho crazy woman. I am so angry. I trembled and yowled in confused rage as he woke up or came back from wherever he was (wishing he was far away from me I can be sure). But I had seen it, a car accident. A smash of vehicles which if it did not injure me would surely absorb countless hours of my life in complication. I got so mad because I realized how close I walk the edge of  "more than I can take." I witnessed how easily a person's innocent negligence could destroy this carefully knitted and nurtured house of cards I have made for myself. The only life I can stand after being so sick, in so much pain, for so long. I became overwhelmed with the feeling of, "Once she finishes swimming in the depths of one Andy Gump lets just throw her in another!" So no drama, we were lucky this time. But if that didn't show me I better toughen up and do it quick then I don't know what will. Life is a brutal game and I gotta be prepared to take the punches. It just would be so much easier if I knew when and where to expect them.
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