Tuesday, August 30, 2011

Get It Together!

This blog was originally published 4/9/10. Glad to see I am still carrying on about the same things!

Yesterday was dissatisfying, as I am finding yesterday so frequently is. I was in NO-productivity mode and did not get everything (or anything for that matter) done that I was supposed to, or at least usually do. I did lance the wound of the re-building phase of Fibromyalgia by pouring that reality out into this blog. Where hopefully I can leave it. But my husband comes home from work and is not very happy with me. There is no dinner, he has had to buy lunch all week, the dog is dirty and needs a haircut and was not even walked. The dishes are a mile high and I am in an orbit not even close to resembling his. Then he starts on me about going to the gym and was critical of everything I did. Standing over me and squawkin' about how I needed to watch my fingers when I was chopping (I told him if I did that I was likely to cut myself because I was not watching the knife!) and not let the dog out so far on his lead and pretty much everything I was doing was wrong or was eliciting a lecture on how to do it properly. Like I am some complete idiot. But it really got me thinking...

I have a deep and pervasive block when it comes to organizing the menial tasks of my everyday life so I can be who I want and do what I dream of. The minusha, the unconscious details that define the underlying current a person possesses. I have always had this block, Fibromyalgia just revolutionized and redefined it. And gave me a big fat excuse to indulge it. Does this relate back to a serious lack of discipline? If so then how do I have a college degree, a long-term marriage, an A in my Spanish class, a decade-long career in my field with an excellent reputation despite many health setbacks and a perfectly behaved dog? Those are core and important categories that I excel and continue to achieve in. I have set my standards high and I work very hard to meet them. But when it comes to doing yoga or putting on my makeup or making the bed every day I simply just don't have the drive. Desire. And once again, motivation.

Can I be thinking about this all wrong? Do I really need to step back and look at this from not only outside, but on top of and orbiting around the box as well? If I flip my thinking and expectations will I be amazed to find how my natural flow finds solid accomplishment? The tasks remain the same. But perhaps it is my expectation of how and when they are accomplished that need adjusting. What is my natural flow, natural inclination? At some point in the day obligation takes over and I usually accomplish something. Some chore, some task, something needing to have been done for some time now. But how do I meld the disorganized tangle of a lump that I am into streamlined and productive accomplishment achieved by tapping into my natural lean? I guess that, my friends, is the million dollar question.

Thanks for joining,

Monday, August 29, 2011

Give It Away To Fear

My husband got laid off. Or more accurately, his department is dissolving and current position will be cut. He was invited to apply to any other jobs the company had open. So he did. And interviews came and went throughout the following weeks. Now yours truly over here does not earn an income, so you can imagine (or many of you have lived) the panic of loosing the only source of support you have, and health insurance to boot. COBRA's are outrageously expensive, especially because if you need to purchase one, it is because you are unemployed. The irony is painful. So here I was, given a choice. I could freak out while he was interviewing, crying and ringing my hands all day long, unsure of our future, what was to become of us. Or I could chill out and not stress over it, not hand over my life to this drama, until there actually was no other job and the outcome was certain. I channeled my friend Mark Twain, "I've lived a long life and seen a lot of hard times...most of which have never happened." I said it over and over again, talking myself into that on day 1. 

Day 2 I decided to look at it as a playful challenge. Maybe this was a sign to change it up? Maybe opportunities were going to come our way that were so beyond what we have ever imagined? Maybe I should live in faith, as I always say, not fear. So I talked myself into a lighthearted attitude about the whole thing. I fantasized about moving to an exotic location, or to a bustling city. Are we bound for a great adventure of the Jack Kerouac and Jimmy Buffet persuasion? But old habits die hard, and by day 3 I had done it. I had given myself over to fear and anxiety. I cried and was angry. Oh so angry. Because it seems like EVERY TIME I am getting up on my feet again, something bowls me back down. I don't have the strength to move, pack up the house if the only job he gets is in Albuquerque. Is he going to have to get 3 jobs because the job market is so slim? Do I need to get a job? Oh I wailed and self-pitied the day away, trying to figure out how we could go back to living on one car. Finally I took a sedative and went to sleep, I had gotten so worked up. See! How was I even going to get through an interview, let alone start a new job, with my brain turning to mush in moments of quick critical thinking from the 2 strokes I had last year?

And day 4 I woke up accepting that yes indeed, anything can upset the apple cart, at any time. And if I want to survive life I gotta roll with the punches. And currently I am just too sensitive, too raw, to roll with any punches, every little interaction with the outside world tearing me up. So I took that pure hopefulness in a glorious tomorrow and put it away in a little box for a later date. A day when I am more able to care for her, and stiffened my tough upper lip. Then I put on that shield, deciding to accept the knocks life throws, but not willing to be  unprotected against them any longer. And finally I knew I had to stop feeling so darn much. Intense and visceral reactions to external stress has been running my life for...well...forever! So no more is this girl gonna walk around flipping out at the next shoe that drops. And the next one, and the one after that. Shoes dropping are just part of life. In the journey Fibromyalgia has taken me on I have been broken down to my core, beat and left naked in the gutter. And in my journey to get my life back I have rebuilt myself up again and again, many times over. Just now, finally, I am finding that strength required to exist in the world without being demolished by it. So go ahead and bring it, world, cause you have been dishing it out at me for a very long time, and I am dying to kick your ass.

Thanks for joining,

Friday, August 26, 2011

Create Your Own Reality

My daughter, who is a dog we call Porkie because she is half Poodle and half Yorkie, has a bit of a personification disorder. See she has these "babies". Stuffed toys she guards with her life and goes nuts if anyone else gets their hands on them. She will "dig" a hole and then put the baby in it and "bury" the dirt right back over it before she lays on it. Mind you this is all taking place on my living room floor and are motions she is doing in the air. Now if you happen to find the baby and move it, or indicate you can see it, she gets a wild look in her eye, snatches it up in her mouth and is outa the room faster than light. Off to secure a new safe spot for her baby, hidden in plain sight. But at night something happens to her. She goes completely baby crazy. I can tell this has started because Yorkie starts sulking after me to come to bed, following me from room to room, boring holes in my back with his pleading stare. Well last night I figured out why. She won't let him on the bed!  I'll be darned if my little princess doesn't turn into some crazed Linda Blair and growl and snap her big brother off the bed, away from her babies!

Then, after the 3 of us are all snug in bed, she goes nuts! Flying around the house, stowing them in all sorts of "hidden" completely obvious places. Racing in circles, up the sofa, soaring off the back to dart into the bedroom, bounce on the 3 beings sleeping in bed, always eliciting an annoyed growl from Yorkie. Then a quick jolt back into the living room to do it all over again. Sometimes I even think I feel her crawling on top of me while I sleep, up to the top of the bed, safely tucking a baby amongst our 4 pillows each. I will confirm this in the morning when I make the bed and yup! The blue and white baby is tucked delicately between 2 pillows.

So basically she lives this whole imaginary life that is completely real to her. She will not have babies. She was 2 days away from her 1 month at the pound at 6 months of age. Unfortunately they don't keep dogs after a month there. Her guardian angel rescued her and brought her to me. So obviously she is not having babies. But damn it if she is not going to take her instinct to mother and make the most out of what she has got! She is not missing out, no matter the reality the rest of us see it in. And as I sit here thinking about her, and what a complete nut she is, I am realizing I could actually learn a lot from her.
Thanks for joining,

*Animals are wonderful companions. There are many that need good homes, and plenty of older mellow ones that can match the energy level of us Fibrates. If you are able and interested please consider adopting a rescue. They have so much love to give! See Petfinder.com for more information.

Thursday, August 25, 2011

Type A To B

I am angry today. Not in a bad mood, irritated or flaring. My temperament is actually okay. But I am just plain angry. I can't decide if its focused more on Fibromyalgia or the reaction being sick with Fibromyalgia illicits in people. I am so sick and tired of explaining explaining explaining what Fibromyalgia does to my life. How badly it has screwed everything up. How I work very hard to look and seem perfectly normal but can only do a fraction of what my healthy counterparts can do. I am so exhausted, deep inside, from what it takes to keep going. Day after day, month after month, year after year. They all roll into one after a while and differentiating them becomes difficult. Then I start to feel my life sucking into a void, a vortex, of never-ending frustrating repetition.

When I was finally given the CFS & Fibromyalgia diagnoses in 2006 I knew I had to somehow, someway, turn my type A personality into a B. The A was killing me! But first I had to figure out exactly what a type-B was, for us A's don't understand how to be successful without pushing ourselves hard. Nor do we understand not having an overwhelming need to be successful. I finally concluded A's were the doers in life and B's the thinkers. I can handle that, I thought, a thinker. And for years I channeled my A inclination into that B behavior, for it seemed the only rational way to survive with a blown-out central nervous system. I would find myself in situation after situation where I was given a choice of how to react. And I pushed myself into what I believed that B response to be. Trying with all my might to channel a modicum of laid-back, relaxed, non-catastrophic reaction. Oh it was hard! Kinda like swimming upstream. And kinda like swimming upstream I did not get very far, either. 

Because I am who I am. An overachieving stress-case constantly focused on beating the competition, being the best. Its exhausting! So what I really set out to do was learn how to be me, successfully. And that is when it finally got interesting. Because I was not forcing myself into a behavior pattern I could not sustain for the rest of my life, kinda like a no-carb diet. I was instead taking each opportunity, when I felt those stirrings of stress or competition, and doing them different. Less panic, less reaction, less urgency, but still the same me. Sometimes it works for me and other times, like an addict, I seamlessly slip back into it before I even realize it. But life is nothing if not full of opportunities, even if they are to improve or do better. And I am always given one more chance to prove myself capable of this change. So today I am mad at Fibro, and how hard it makes living sick while looking well. But I am not missing out on this opportunity to take that anger and turn it into productivity. Even if that productivity is sitting and watching TV all day instead of stewing, never getting out of bed, so pissed off and angry that life has been stolen, all the while facilitating the theft.

Thanks for joining,

Tuesday, August 23, 2011

Thank You

I always was a bit of a morbid child. At 14 I was reading Helter Skelter and writing poetry about the beauty of death. I guess its just the way I formed. Well when I was 16 I got into a really bad car accident. Some moron was going 20 mph in his muscle car down the side aisles of the high-school parking lot and I entered the main aisle to drop my friend off after lunch. He hit my passenger side, poor thing still in the car, and knocked my 1983 Buick Regal a quarter turn with the sheer impact. I got a concussion and a trip to the E.R., and a lifetime of back pain. Lucky for me it was the Friday before Spring Break. I was confined to my bed while all my friends partied and had fun. And it was an additional week after that before I was released to go back to school and work. My junior year term paper was due shortly, and I could not have cared less. Passing 11th grade English is not exactly something that is optional if one wants to graduate. And not something one can do if they don't turn in their term paper. But I procrastinated until the night before it was due. Luckily all my research and very detailed outline had been done well before the car accident. But I just could not for the life of me string it together into sentences with a heartbeat.

I fussed around with half-hearted attempts to use the material I had written. Long before copy and paste even existed. It was either the concussion or my brain, but I just could not do it. So I did not turn the paper in. I went to class and the teacher was out sick. Yes! The substitute date stamped all the term papers my classmates were turning in and I went home and wrote my term paper. From start to finish, all at once. I chucked everything I had previously written and I wrote all six pages of double spaced MLA citation perfect with 4 pages of referenced sources on my dad's MS-DOS computer. Printed on his Dot matrix printer. And I turned it in the next day, a day late, which guaranteed I could not get an A. When the teacher returned the papers the following week I was the only student that received an A. To say I was shocked was an understatement. But don't be too jealous, I scored 380 on my math SAT's. That is barely a pulse. 

I was going through some files the other day and came across this infamous term paper. Are All Relationships Doomed? An Analysis of the Works of Larry McMurtry. As I read through it I discovered that I had concluded indeed, all relationships are doomed. Destined to fail. Oh such a positive child I was! But really what I am trying to say is, shouldn't somebody have recognized that? Every other student in my 3rd period 11th grade English class had scored lower than I did, after a few months of struggling to put the whole concept together. Nobody, not any of my teachers or counselors or anyone, saw something raw, waiting to be developed, and channeled me in that direction. Something with English...writing...words? No, instead I got a degree I hardly used and spent most of my 20's working in a completely unrelated field. It took illness to get me writing. And the wonderful time and place technology provides. And more illness. But really it took you all. Anyone who has ever read this blog. Dropped me a note. Let me know. Left a comment. That your heart can feel my words, your reality can be a little more understood. That the best way I know to express myself is working. My voice is being heard. And for this I simply must say, thank you.

Thanks for joining,

Monday, August 22, 2011

Everybody Has Them

Everyone has those days when you wake up weepy, or pissed off, and the rest of your day is viewed through those highly-emotional glasses. All of us have good days and bad days, for no indiscriminate reason. We each get those days where more than anything in the world we don't want to get up and go to work. And of course the days when we are simply too sick to do anything at all come, too. Conversely we all have experienced those days we awaken with a song in our heart, and no amount of gutter-splashed-all-over you bus encounters quiet the melody down. Oh glory the days we get good news! For that can take a bad day and turn it around all on its own. But hopefully, for the most part, our days lie somewhere in the middle of all these extremes.

I wish I were not an emotional person. I wish I did not live with my heart out in front, leading the charge for all to see. It is a painful way to live life. Vulnerable, unprotected. I have friends that wake up each day the same person. But no, not me! I know people with a generally sunny disposition. Of that I am oh so jealous. And I even know some folks a bit on the unhappy side, that still to manage to have the same temperament all day, day after day, save for some big huge dramatic event. I can even say I would prefer that, still. Because I am really starting to wonder if perhaps in all this feeling, some of the damage of Fibromyalgia wasn't punch-stamped on my brain.

They say emotional pain can cause physical. As most folks with Fibromyalgia know only too well. Many of us were prescribed anti-depressants and dismissed when we first went to the doctor and started whining about this pain and fatigue thing. Few of us got better. Most of us got worse. Because pain, trauma, illness or whatever on earth causes Fibromyalgia got there first. Then with shorted out fuses, we frazzle into an emotionally raw reality. I have walked this journey I did not choose and certainly disdain, and feel at this point emotions are the main thing standing between me and wellness. For each eruption in the delicate equilibrium I work tirelessly to create rocks me for weeks, months sometimes. It's just too much. Too much of my time, my heartache, my health and well-being. And quite frankly, too much of my potential. So in searching deep inside, dredging through the swamp to discover what really creates this massive stronghold emotion is in my life, I discover it's caused as much by other people as it is by me. In my reaction to these people. And I may not be able to change them, but there is one thing I can change, and that is what I allow their actions to do to me.

Thanks for joining,

Friday, August 19, 2011

Deciphering Health Care

As I edit this blog to be re-published, originally written on 3/22/10, I can only stop and laugh. I truly believed the worst was behind me. Boy did I need a telescope into the future!

Health care is something I know way more about than I ever wanted to. I now speak the language of deductibles, EOB's, MOP's, co-pays and in/out-of-network, fluently. My medical costs have been astronomical, mainly because modern medicine offers very little preventative or alternative coverage and doesn't know squat 'bout Fibromyalgia! It has taken me years, and many amazing doctors and providers, and many stages and levels of healing, to get to where I am today. I have a great doctor at the Fibro & Fatigue Center in Las Vegas to thank, an amazing acupuncturist in the Bay area, a UCSF resident that was the first doctor to take me seriously, a research doctor at Stanford, and currently an awesome osteopath at the Mayo Clinic. There have also been many duds in the mix. There have been lots of bad drugs, asshole physicians and unsympathetic caregivers. We have paid and paid and marched on, always with the faith that things would get better...they had to! 

I had to believe I would not always be unable to sleep, every inch of my body in writhing pain and mentally unstable. I would not always suffer from vice-gripped headaches, everyday at 4:00 that darn "afternoon flu", stiff and swollen hands and throbbing feet stabbing knives into my calves with each step. And I am so overwhelmingly happy to say that today, I don't! Oh it's not gone...never gone. But so well managed I can now look back with perspective and say with confidence that the worst is behind me. What I have learned about myself and my character is huge! My capacity to march forward into the eye of the storm, my ability to pick myself up by the boot straps and do what needs to be done. There were months on end when my only activities were 3-4 doctor appointments a week, and that was exhausting! The money we have spent on prescriptions and supplements and provider expenses could have paid for a house by now! And now the USA has all these changes to our health care system coming into law. It is definitely a system that is broken and needs to be fixed, but I don't know if these  are the changes needed to fix it. Nor do I think these new laws will change things for me, you, people living with Fibromyalgia, or those yet to be diagnosed. It will be interesting to see if it does not indeed make things harder

But certainly we will still have a tireless time getting a diagnosis, we will only be offered drugs that "mask" the symptoms, not heal the source. We will still gain the best relief from a personalized combination of modern medicine and natural, holistic living, something that is not given its proper importance in mainstream medicine. And we will still cling to any concrete proof that what we have is indeed real, needing it very badly to be researched and understood, and ultimately cured! Will I say at the end of the day I am better off for this? Am I a better person for having stripped myself of all control and options, surrendering to an illness that required intensive, repetitive perseverance to conquer? And then having to rebuild my life brick by painstaking brick? I am stronger and more capable, a belief in my ability to survive the storm discovered deep, deep inside. The perseverance of the human spirit of survival is mine! My priorities are correctly in place and I have educated myself to the truths of the relationship between man and nature. But if you asked me to go through it again, to gain the same insight, I would have to tell you to shove it...where the sun don't shine!

Thanks for joining,

Thursday, August 18, 2011


As we celebrate the 1 year anniversary of this here blog I am realizing a lot has changed. There are quite a few things that need to be addressed, and adjusted to fit this change. I started out as a novice writer and experienced Fibro patient that read my personal blog out loud to my husband. He told me it was good and I should publish it. Now my husband is a very proud man, and would not encourage me to fall flat on my face publicly, so I took his word for it and publish it I did. Folks liked it, and things kept rolling and going. And the state of affairs, the reality Fibromyalgia patients live in, smacked me around the boxing ring really hard. For I put names and faces and typed words to these patients who's heart and soul were pouring out in such despair, panic, defeat. And in sharing with them, meeting them,  getting to know them, I realized they were going through the exact same living hell I had been through! I was not the only one! It was a revelation. A horrible one, but a revelation none the less. And as we got bigger, and the days rolled on, blog on top of blog, more of my heart and soul poured out into my computer. And on the screen of this machine I found my purpose. My passion. My plight. 

See I consider myself to be fortunate. My husband did not leave me because I was sick, as oh so many do. And we had enough credit to our names I could seek some alternative treatments, for modern medicine is a mess when it comes to Fibromyalgia! After about four years of wanting to throw myself off an orange bridge we left cold wet San Francisco and moved to sunny hot Arizona. I started to feel a lot better, and have somehow, fighting with more blood, sweat and tears than I knew one woman could have, started living life again. There is no shame in being fortunate in life, I recently told my friend. The only shame lies in doing nothing with it. So that brings me to The Fibromyalgia Crusade. I started that campaign with a specific purpose, knowing I could not address all the ills Fibromyalgia inflicts on a person. My mission was to provide peer-patient support, knowledge, understanding, a little bit of validation and lots of information. And to empower each patient to take their power back, search for a doctor that will help them, avoid the mean naysayers in life and spread as much awareness as they possibly can. For with the masses, large numbers of people shouting about it, we could be heard and change could happen. 

So here I sit with a very successful first year under my belt. And about 400 published blogs where I have divulged more details about my life than I could imagine anyone would want to know. But we keep getting new people, and they are confused about me, because they weren't around in the beginning when I told all the nitt gritty details of how I fought the Fibro dragon and won. I can't imagine anyone would want to, or any Fibro patient is even capable of, sifting through and reading all those blogs, trying to figure out what in their life they can change to start to feel better, too. So once a week, starting with the beginning of the blog, I am going to take a good one, refine it, and re-publish it. I hope the new readers will find understanding, and my faithful friends from the beginning will be reminded of how far they have come. The Fibromyalgia Crusade is getting new products soon so we can sport our purple ribbon with pride, and take every precious opportunity we are given to talk about this illness called Fibromyalgia some have heard of but no one really understands. And I have started writing my book. Not another "this is how I got better and you can too" book. No, I am writing a book people that have never even heard of Fibromyalgia will want to read, but the impact of the understanding they walk away with will be astounding. So stay with us my friends, new, old and yet to come. We are changing as we grow. Refining, redefining. Getting stronger, bigger and better as we come through the struggle of our lives, together.

Thanks for joining,

Tuesday, August 16, 2011

Elaine's Medical Chart

I was watching a re-run of Seinfeld the other day, kind of as background noise as I busied about the house. As a child of the '90's I grew up on that show. The Thursday night line-up of the ages; Friends, Seinfeld, ER. It didn't get much better than that. As I paid attention to the particular episode that was on, I discovered it was the one where Elaine gets a "bad mark" on her medical chart for being a difficult patient. This chart follows her around, from doctor to doctor, through all of New York city. She could not get a doctor in the land to treat her for a total body itch that was driving her crazy, for once she was noted as difficult, they won't treat her. Sound familiar, my fellow-Fibrates? Well I am watching this and getting more and more pissed off as the laugh tracks get louder and louder. That is illegal! They can't just give your medical records to another doctor without your consent! I fumed. Yorkie and Porkie struggled into the living room, yawning and stretching, to see what all the fuss was about. As this kept going on, from doctor to doctor she went, the more she was treated like a hypochondriac, crazy lady, total nut job. 

There was a particular pain in my heart this episode was floating to the surface, and I got very mad. For I was this hypochondriac, crazy lady, total nut job once upon a time myself. Except an annoying itch was the least of my problems. I was in so much pain and deep down exhausted at my core, 10 hours of sleep a night were not enough! I could hardly do my job and  my sensory perception was so off the charts I could not even go to the dog park because the smell of urine overtook me. My stomach was a mess, my head in a vice, my throat sore and my right arm darn near paralyzed. And yet nothing was wrong with me. Because after a few vials of blood, the results hardly filling up a complete page, modern medicine could not diagnose me. They just gave up on me. But my symptoms did not go away, and only continued to get worse. I gave up my job, taking a 4 day-a-week position I had previously held on my way to getting the job I had to give up. A self-imposed, illness-educed demotion. It was a short time, only about a year, before Fibromyalgia and CFS disabled me. After I pushed myself so hard to keep up with the obligations my healthy-self raced around in a type-A frenzy to fulfill. 

I really wish someone had told me then this was not an illness of the normal kind, the kind I had been raised to believe a pill or surgery could cure. That this was a complete crisis of the way we live our lives. But I had to learn that on my own. I heard it rumored many times along this journey that I had to change my lifestyle completely. Change jobs, countries, husbands, whatever it took, and this illness would subside. What a luxury, I scoffed. Who has the money to do that? I was not changing husbands, that just seemed much more complicated to me, and the one I had I loved very much. I could not go start over in another country because I could not work enough to support myself. And that too, sounded like an awful lot of work for a girl that laid on the sofa moaning and crying all day because doing laundry was too consuming. So I did what was available; pushed too hard, had a breakdown, spent 7 months disabled and fought harder than I ever had to get myself standing back up on my feet. And 6 years later I will have to concede, I have changed my lifestyle completely. It did not seem possible at the time, but it is the only way I got enough of my life back to find that deeply buried laughter in my heart, song in my step. A reason to go on.

Thanks for joining,

Monday, August 15, 2011

The Solace Of Solitude

If you had asked me what I wanted to do when I grew up when I was say, 8 or so, I would have told you I wanted to have lots and lots of kids. My only-child (until age 12) syndrome was in full swing and I would have bet all my Garbage Pail Kids that when I grew up my house was going to be busy, bustling and bountiful. That desire came back really bad after I saw My Big Fat Greek Wedding. Family, chaos, laughter, love. So much going on, so many relationships, so many people. Busy, with everyone around. Always. My husband and I were newly married and watched that movie as we chain smoked and pretty efficiently put back a 12-pack of beer in our room at La Quinta Inn near the airport in Tampa, Florida.  We had spent the past week with my very lovely, very conservative, extremely religious grandparents and were catching up on our sorely missed doses of pretty innocent sin. I cried to him about how badly I wanted that life. That big family. He asked me if I wanted kids now, as in at this point in our lives. Of course not, I sniffled. He had yet to finish college and we were still smoking cigarettes and drinking 12 packs of beer! I wanted better for our children, and ourselves, than that. 

So it is extremely strange to find myself at 35 years of age, with a very happy 10 year marriage, living my life in solitude. My days are alone, not even a part-time job to distract me from myself. I put forth a good "face" effort, but am a pretty miserable housewife. And I did not wind up having any kids, in fact. No, I got seriously sick like 5 times and made the choice to not pursue parenthood. I am in no way saying that is the only choice a woman can make, or a couple can arrive at if given the same set of circumstances. It is just the one I made. After existing for so long in so much pain, so much weight gain from this drug or that, years of stolen activity while I sat decomposing with Fibromyalgia and CFS, I just wanted a normal life! Relationships with healthy people are difficult, confidence destroying, even. The sensory overload of activity hangs in a delicate balance, so easily tipped in the other direction, the chaos of a mind-fold. It is hard to be around other people. Lets face it, I am just not that flexible. I am chronically ill! So instead of beating my head against that wall, I have chosen for the most part to avoid it. Step away, untangle myself from the expectation.

But now I find myself with no job, very few friends, no children...really no reason to get up in the morning except for y'all. And you don't care if my hair is ironed straight, I am wearing the crown jewels of a long-lost monarch or have a seaweed mask slathered all over my face, for you can't see me. And now that I no longer get makeup and skincare for free, I find my cheap self emerging as I hoard my stock, rationing out little jars of eye cream or tubes of lip gloss at a time. I have found nowhere near the motivation to put makeup on to sit in my house all day and take it off with no one but my husband, who has seen me at my very best and certainly at my worst, maybe seeing it for an hour. The eternal fight with my frizzy hair to go either curly or straight, but for goodness sakes please just choose one, simply not happening. However, I can feel a restlessness stirring inside of me. A feeling I have not felt in many many years. My life was fight or flight, pure survival, for a really long time. I broke a few (dozen) times along the way. Yet the better I feel and the more I take care of myself, no escaping that 5 Pointed Star of Health, the more I start to feel like me again. A me that I had forgotten completely about. In the quiet stillness after the very big storm here I sit. Quiet, not always patient, and learning the whispering and hushed voices in my heart and in my head are still very powerful. And I am remembering something that has long been forgotten, I think I kinda like me

Thanks for joining,

Friday, August 12, 2011

A Cold Hard World

Life is a roller-coaster. One with no set path or laid track, swerving and veering at just the right moments, avoiding the crash into the inevitable, if you are lucky. There is no map to follow or manual to reference. You are shoved out of a warm womb into this cold hard world, held upside down and smacked on the bottom! If that isn't the biggest tell of what life is then I just don't know what! I was born carefree, and spent my childhood knowing I was deeply loved. But parents are human too, and as I grew up the pain of life took its nips at me. I morphed into a sad adolescent and spent my teen years rebelling and self-medicating the pain my nurture and nature had placed upon me. Of course eventually the injury from my bad choices got thrown into the mix as well, and I set sail into adulthood kicking and screaming. A total mess, emotionally closed off and not prepared for the level of responsibility life all-grown-up comes with. Somehow I was able to figure it out...one painful lesson at a time. 

Through all this experience what formed was a very dry, off-beat and cynical sense of humor. I developed an ability to laugh at the absurd, take the sad, dark and twisted and see a sardonic light of humor in it. I call myself a realist with a positive attitude. No one would ever call me Positive Polly, but hopefully not Downer Debbie, either. More like Sarcastic Sally. Yeah, that fits. Well Sarcastic Sally over here worked really hard to make a life for myself of my choosing. And I was getting there, I really was. And then I got sick. I got to meet Weepy Wilma, Depressed Deena and Unhopeful Ursula. Oh I did not like them! The unexplained pain and fatigue tore me up! And sadly I forgot how to laugh. Life does that when its mere survival is in question. And I had to learn all over again how to take care of and love myself while I progressed my life, when all I wanted to do was crawl under a rock and cease to exist. 

But my guardian angel, a very busy angel she must be, kept me safe. Slowly but surely, bit by bit, my fight came back. But that was not even the hard part! The hard part came when I actually had to use that fight to trump this illness. But I did. And as much as I hate to admit it I am so much better than I was before. The quality of my person, depth of my compassion. The growth in my heart and soul. And I have found my humor, my sarcasm, once again. There are many heartaches between the girl I was at 28, symptoms of some mystery illness halting me in my tracks, and the woman I am now. I have worked very hard to get back what Fibromyalgia took from me. My light, my hope. And I want to share with you all how I did it, knowing that your journey will be far different than mine, but maybe some bit of information will help. I have put everything I know, everything I did, in this blog and on The Fibromyalgia Crusade website. If you wanna know how I got here, there is lots and lots to read...

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Thursday, August 11, 2011

Super-Human Superhero

I am an avid fan of Project Runway. Ms. Heidi Klum herself initially attracted my husband to the show. We both got quickly hooked on the super-accomplished super-model and her runway competitions. There is a designer this season that has only been sewing for 4 months! She was in the Miss Universe pageant in 2008, holds a BFA in communications design from a prestigious design school and now owns and creates her own successful clothing line. And she is under 30. So we waited for the first competition to watch her get creamed, never believing such a "newbie" to the craft could withstand the vigorous competitions the contestants are strung through. Much to our surprise, her first outfit was quite gorgeous. The second competition it was to our lesser surprise that again she pulled off garments that possessed beautiful design and execution, style and fluidity. 

Also a die-hard General Hospital aficionado, I watched James Franco guest star on my soap a few times the same year he was nominated for an Oscar. He plays an avant-garde psychopathic murdering performance artist, specializing in posing the dead and photographing them. That seemed perplexing to me. Is he a fan? Why would an Academy Award nominated actor keep coming back to a re-occurring role in a daytime soap? Then I discovered a little bit more about Mr. Franco. He graduated with his MFA from Columbia, is obtaining his PhD in English from Yale, is studying at NYU's Tisch School of the Arts AND all the while completing coursework in digital media at a private design school and (drumroll, please) has been selected for the PhD in literature and creative writing at the University of Houston. Are you kidding me? All at the same time? What a twerp! He just sounds annoying. Who are all these super-human people, celebrities, public figures, that do like 50 things at once? Why do they exist? How can one person even begin to balance that many thoughts and ideas at one time? I can only assume the compartmentalization skills must be remarkable. For my mind gets all stressed out if I have a messy house and loads of laundry in my basket. Dinner to cook and dishes to do. Then I read about these super-achievers and get all stressed out again, knowing if I had never even gotten sick I still could not do as much, as well, as they do. Yes I know there is a huge financial gap, and I am sure that makes up plenty of difference, but still... 

And as I am rolling this ball around in my mouth it hit me. We, my fellow Fibrates, work just as hard as they do! Yet with none of the recognition or success or benefit of wealth, celebrity and influence. We constantly challenge ourselves with each step we take in surviving the daily chaos of living chronically ill. Some of us have been doing it for so long there is not much memory of life being any other way. With each trip to the grocery store, slow struggle into work, battle with the insurance company, we demonstrate extreme unbreakable strength. A mother of 3 small children pops open her eyes in the morning, wondering how on earth she is going to get through yet another day. But she does. The husband that wonders how on earth he is going to continue to support his family, the pain and stress piling on thicker and thicker with each flare he pushes through. And many many times those flares hit very hard, the hormones shoot rockets, brain chemicals surging out of whack. And one's morale is downgraded, to the point that not going on with life any longer sounds the rational choice, the only one to make, in fact. But yet again we do not give in. And in turning around from that place, that horrible awful place so many of us have been time and time again, once again that remarkable strength is exercised. I get so frustrated that I can only accomplish what I do, feeling inadequate and simply incapable of taking care of myself, my life, my responsibilities. But in each day we wake, and survive, always pushing through to make it through, keep in mind my dear friends, how remarkable you truly are. You are my super hero!

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Today marks the 1 year anniversary Chronicles Of Fibromyalgia has been published. Thank you for the 76,000 views!

Tuesday, August 9, 2011

C's Get Degrees

Last month my monthly visitor wormed its way up to one of the top pain experiences of my life. I am talking level 9, screaming and crying, about to go to the ER type pain. After hours of agony I remembered a hand held back massager my mom had given me a few years before, and proceeded to vibrate the darn thing on my stomach for 3 hours straight before the pain let up. It was awful. I usually experience a light level of PTSD when going through severe pain experiences, and I was in a daze for quite a few days after that. Once the whole traumatic ordeal was over I made an appointment with my gynecologist to find out what was wrong with me, for surely something had caused that pain. I normally see a nurse practitioner but decided, since there was obviously some sort of complication going on, to see one of the doctors in the practice. What a mistake! First there was the misunderstanding with the nurse about whether or not my insurance would pay for the visit since I was one whole month early for my annual exam. Lucky for me my husband's company changed plans so after 20 minutes of back and forth and phone calls to the insurance company, it was determined they would pay since this is the first year I am insured with them. That was wildly annoying in and of itself. But certainly not the worst. 

Finally in comes the doctor and when I explain the severity of my cramps to her she told me to take Advil. I laughed and said I eat jelly beans too, and they work about the same. I told her I had Fibromyalgia. Then when I told her I had 2 strokes last year she looked at me like I had just told her I was from the planet Pluto and was going to take her back with me. "You had s-t-r-o-k-e-s? Well I really doubt that!" What the hell did she just say to me? "I am putting "strokes" in "quotes" she says, typing rapidly on the computer as she smirks at me, "because I don't want your insurance company to be alarmed. Those were your words." I am suddenly transported back to 2005, being told I was a loon, a liar, since no blood test showed any abnormalities despite my intense pain and fatigue. She then informs me I will never be a candidate for HRT during menopause if I really did have a stroke, because of the blood clotting issue. I am trying to explain to her it was a blood vessel problem, not a blood clotting problem. A subset of Vasculitis, very rare. She cannot grasp the concept. Suddenly I am wondering if they have started giving out medical degrees through correspondence courses, this lady is so inept.

Exams done, I meet her back in her office. I scoured through my planner, hoping I had not taken out the page my husband had written all the information on when I was first diagnosed in the hospital. Eureka! I had subhemorrhagic strokes. So I tell her this. She says the name over and over again, as if trying to pull some familiarity from it but can't. At this point she is lucky I have that inability-to-problem-solve effectively in high-stress situations because I would have punched her in the nose! So back to the cramps, the reason I am here. Reviewing the results from ultrasound and finding no problems (thank God) she replies "I can't believe Advil does not work for you!" I just ignore this Advil obsession she seems to be on. So what can you do for me? Well, I can write you a prescription for birth-control pills. I don't want to go on birth-control pills, for about 1,000 different reasons. She just shakes her head and tells me since I am now almost 35 I should get a baseline mammogram. Wow. I am blown away. I have officially received the brush off! And am painfully reminded yet again that doctors only see what they want to see. And if they don't know, they dismiss or ignore you. So yeah, you bet your sweet bippy I fired her ass. But it stirred up all those horrible memories of being so sick and desperately needing a medical professional to recognize my symptoms were real, not some invented fragment of my imagination. So my friends, let this serve as a reminder to us all we don't have to settle for second-rate medical care. We may have to look a lot harder for it, and go through lots of trial and error to find them, but the good doctors are out there. And as I have said before, they are usually just hiding under a pile of crappy ones.

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Monday, August 8, 2011

Releasing Toxic Anger

When we lived in San Francisco we had one car. It was more of a hindrance, and extremely expensive, to have another. We would joke that the apartment came free with the fee for the parking space, it was so outlandish. If you ever actually drove that car anywhere you wanted to, you know, stop and get out, lets say, parking was a nightmare. Unless your fancy apartment had a spacious parking garage and the business you worked for provided he same luxury as well, your bumper was a dented, dinged, scraped up mess. Everyone accepted it, that was just the way it was. Or you took cabs. Obviously there was a significant amount of car-sharing that went on between my husband and I. On his birthday a few years back he came home from work for lunch, picked me up and we headed out to grab a celebratory bite before handing the car over to my errands for the afternoon. As we drove through our little residential neighborhood towards our destination we stopped at a very familiar 4-way stop. He stopped, it was clear, then went. BAM! A car plows into our SUV square on the drivers side. He came from nowhere! He did not even stop at his stop sign! He was going too fast! Long and very infuriating story later that very dishonest liar said we ran the stop sign and hit him. So both of the insurance companies labeled it not determinable based on evidence. Therefore it was ruled, and it went on both their records. Oh the anger I felt, as I struggled to repair my body after a car accident with Fibromyalgia. In the wet cold achy-hollow bones of a rainy California bay area winter. Wow, that one took a long time to let go of, the anger and resentment driving me to infuriating breakdowns. For what that man did was so wrong, and I was too sick to do anything about it. I could hardly get myself to work 4 days a week. There was no way I was battling with insurance companies and unreachable witnesses. So where was I to put all this anger? What was I to do?

Ironically enough, right around this time, I received a perplexing phone call one Saturday morning. It was from a collection agency informing me that although I had been making regular monthly payments on a bill for a previous hospitalization, the hospital had turned my debt over to collections and it was going to show up on my credit unless I paid them in full within 5 business days. $2,000.00. I was shocked, jaw to the floor, as I struggled to comprehend how I had been sent to collections with absolutely NO notification and while I was making regular monthly payments! The fury was blinding, the rage outrageous. I wrote appeal after appeal to the hospital, the board, threatened to report them to the AMA, all to no avail. Everyone I bitched and complained about this to told me what the hospital had done was illegal. But short of hiring an attorney and going to court, there was nothing I could do. And considering I could not even pay this hospital bill, fighting in the court of law over the principal of the injustice was not a luxury I could afford. My options were to charge up my credit card or take the hit on my credit report.

But what both these incidents did to me was beyond compare. I was so angry I could not even see straight. I was such a victim! This was ridiculous! Here I was sick as a dog, my husband working himself to the bone in pure survival mode, and being smacked around randomly by the big giant powers that be. Eventually my anger made me much sicker, and I had to get a grip. I had to make a decision. Were all the little bits of crap in life, that make up life, going to be the end of me? How much more power was I going to give all this anger and resentment? So I worked very hard to get to a place where I could let this go. No, I was not admitting that what happened to me was fair or right, just that it was out of my control and that was simply the way it was. And my life was worth a lot more than the sum of a dishonest driver and corrupt hospital. There are many components that were critical to getting on top of my Fibromyalgia. I believe healing, and the subsequent reclamation of my life, could not begin until I learned the power of forgiveness. Once I was old enough or mature enough or experienced enough or whatever enough to objectively look at my life, examine the stress, it was profound. Most of us, well all of us with Fibromyalgia at least, have been damaged in some way so severely it has altered the response activity of your entire body, for it grabs hold of the central nervous system. Your control center. And if you expect any kind of improvement or recovery, I believe that tightly bound onion called Fibromyalgia has to be peeled back one layer at a time, until it is exposed and you are in control again. And at least for me, a chunk of that onion was unforgiveness of past emotional traumas. It was not so much about forgiving the other person, but releasing the anger from what happened to me as a result of their action. All of this junk had a very strong hold on me. And it was all in the past. A place where I could do nothing but learn from it and move on. So I did that. I learned how to assess a situation, see where my control lied, and release the power the rest of it had over me. Most of the time. But in all honesty I do have to admit, I frequently think about the man that hit us, and wonder how his karma got him.

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Friday, August 5, 2011

Coco Me Pretty

I have never covered up my participation in watching some pretty awful reality television. Shows with everyday people cavorting around in front of a camera, believing the world wants what they are selling. I have done Jersey Shore, The Girls Next Door and of course, The Kardashians, lucky enough to somehow avoid all the spin offs. I have rocked it to every season of Rock of Love, both on and off the bus, don't even get me started on My Big Fat Gypsy Wedding and I will even cop to that Pretty Wild debauchery that was on for about half a season and never got renewed. So when commercials started popping up for Ice Loves Coco I had to set my DVR to see if it was worthy of my viewing pleasure. Ice is Ice-T, the infamous pimp-turned-rapper, well known for rapping about killing cops in the early 90's only to wind up playing a detective on Law & Order SVU a decade later. Coco is a model with a famously large derriere and a bust to match. With a 23" waist in between. They are married with one fur-baby. And after spending a half-hour in Ice and Coco world I was charmed. It was not the puppy Spartacus, although the adorable bull dog is worth the whole experience alone. And no, it was not Ice. It was her, Coco.

Bleached blonde extensions and spray tanned orange with long fake nails. More makeup than even I would wear on my way to work the cosmetics counter. Her home is a "heels only" zone. No flat shoes allowed. Clothes hugging her 39DD top and 40" bottom like a latex outfit that was formed and dried around the curves of her figure. She is ditsy and appearance-obsessed, but does seem to come off as a genuinely nice person, if they still exist in celebrity land today. She is somewhat like a puppy or kitten. If you wave something in front of her she will get all excited and pounce. But what really, you might be thinking, is the true attraction here? And after my 3rd episode I was finally able to put my finger on it. She is a blaring reminder that there is no shame in looking good. That a woman taking pride in her appearance can be a source of power and confidence. And that I have become very complacent with my outward identity as of late.

I remember how hard I struggled to keep a normal, regular schedule when I first went out on disability in 2006. I set my alarm for 8am and put makeup on every day, despite the fact I could barely use my right arm and hand. I got in bed every night at 10pm and shunned napping because I was struggling so hard to sleep at night. And really, I was only out for a month and needed to stay on a regular schedule, right? Keep up appearances, even if I never left my house? Well that's a funny one because that...girl...and this woman writing this today have been separated for many, many miles. Far too long. I can't even remember what it felt like to be her anymore, the hard knocks of life scaring my psyche and consuming my reality in the years that span between us. But I am slowly adding things back to my life. Hoping with all hope that if I am cautious I can avoid a major flare and subsequent backslide in managing Fibromyalgia. And my first focus was regular exercise. Now that it is a regular, non-negotiable part of my life, its on to the next challenge. Gettin' pretty. I will set my sights toward primping and puffing everyday, even if it is just to sit behind the computer in my office all day by myself. Because I know the next step after that will be leaving my house on a regular basis, out to mingle with the world at large. Return to my place in society. One thing at a time, my dear Fibrates. Pacing, patience and perserverance.

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Thursday, August 4, 2011

Good 'Ol Fashioned Diet And Exercise

I just turned 35 and am as pleased as punch that although still scales away from my ideal weight and body tone, I am on the road there, and the road is showing me results! Finally. About 2 months before my birthday I started an exercise program. I figured I could at least try to look better on my birthday than I did at that very moment. That was my goal, as evasive as it sounds, and for some reason the right combination of motivation, inspiration, dedication and desperation hit me, and I have actually kept it up this time. I refused to meet that birthday whining and complaining like a victim about Prednisone weight. Or Fibromyalgia weight. Any weight, for that matter. But the results were so slow coming! After about a month I still couldn't fit into my fat pants. Yes my upper arms were thinner, face resuming its normal contours sin chipmunk cheeks and the top of my belly smaller than the bottom, finally. But I had developed this mid-region weight that was glued and sealed to my rump and very round hips, and not in a sexy baby got back way either. I already eat very healthy, had cut out fast-food and dining-out all together (unless it's a special occasion or someone else's dime), switched to the salad plate instead of the dinner plate for portion control and when food would come to mind I quickly forced myself to start a project, lengthily and consuming, if not at all interesting, like reorganizing my very disorganized file cabinet and watching Chelsea Lately at the same time.

I was very anxious to know if this was working. During this time of s-l-o-w coming results I asked my husband if I was smaller now than I was on our last vacation in 2009, when I was at the height of my Lyrica explosion. He hemmed and hawed and stammered and sputtered something to the effect that this was "different" because exercise was shaping my body in a better way. He started getting all into the science of building lean muscle while dropping fat, increasing my metabolism, that kind of junior-high health class junk. So the answer was no. But instead of throwing a my-husband-just-called-me-fat tantrum I came into the office and looked at the pictures on the computer from that trip 2 summers ago. And as heavy as I thought I was then, Lyrica does not hold a candle to Prednisone in the weight gain department! After all that exercise and discipline, despite the fact that I had indeed lost pounds, and puffiness, I was still thinner in 2009 than I was at that moment. Oh it was depressing, puzzling and annoying, if extremely motivating!

So I kept going, up at 7 three to four mornings a week, letting Yorkie & Porkie lead the iditarod race in a big circle back to home. The amount of running steps getting bigger and swallowing up the walking steps. Yoga warming my muscles to stretch and release toxins as I loosen them up, new positions and poses becoming available to me as I gain endurance, strength and flexibility. I was so sore, had to up my pain meds, soothe my piercing muscles with self-massage as they adapted to the building demand I was requiring of them. And I gotta admit it, this was really very hard. But...those fat pants I could not even fit in after a month of dedicated action? They are now too big and in the donation pile. I am firmer and in a lot less pain. I had to get a new bathing suite, the one from 2009 now too big on the bottom. The longer I keep at it the quicker the fat melts away. So have I achieved my ultimate goal, a single digit dress size, erased all my extra chins? No. But I look a hell of a lot better than I did 2 months ago, and that is good enough to keep me going!

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Tuesday, August 2, 2011

Learn To Fly

A couple of days ago I took Yorkie & Porkie on our afternoon walk to get the mail and stretch our legs. Not far down the path Yorkie stopped to relieve himself. I spotted a little tiny baby bird bouncing around in the xeriscape, under a dense tree. I could hear mama singing to him high in the branches above. The baby bird did not seem to know how to fly. It was perfectly formed and very tiny, but every time Y & P would lunge at it, the bird would do these little hops away. I finally spotted mama, in the thick foliage above, stretched out on a limb and calling a mother's cry high into the air, her little red chest stretched wide and proud. Oh I wanted to put baby bird back in its nest! But you can't do that, the mother will smell human and shun their own child, right? No malicious intent, just a preservation instinct I remembered learning about in my childhood. I thought about going to grab some rubber gloves but there was no finding the nest in the dense tree above. Besides, how was I gonna get up there, with a half-ounce bird in my hands no less?

I made some chirping sounds, channeling mama bird to fly down to where her baby was. Neighbors started to look at me oddly. I looked at the baby and told him he needed to teach himself how to fly. He just sat and stared, gaining tiny little stirrings in his wings as the moments passed, I prayed. I decided to go get the mail and see how far this avian duo could get in my absence. I walked back to find baby still hopping on the gravel and mama far away, way at the top of a very tall palm tree. Still chirping for her baby, still searching, still calling. And I looked at that little guy down there and knew he had to learn to fly if he were to survive. And there was not one damn thing I could do to make this happen. The circle of life, I thought. So cruel. So harsh. The metaphor just knit together right then and there. Smacked me in the face and provided instant clarity. For this is exactly what I am working so hard for, trying to do for all of you.

I had wings, but I did not know how to use them. I could fly, but no one had ever shown me how. In fact everyone told me it was impossible. So I sat on the ground and cried and whined and bitched and moaned, flinging myself around in desperation. But no one else was on the ground with me, so I had to figure out how to get back up to where the rest of the world was. For I was not gonna sit there in the gravel when everyone I knew and loved was soaring high up in the sky. And that, my friends, is why when someone asks me how to get better from Fibromylagia I, like most doctors out there, cannot give a pat answer. I don't know what you need to do to get better from Fibro. Through my own personal journey, massive amounts of self-education on health and wellness, and a big fat dose of self-discovery I figured out how to improve my quality of life to something worth living. But what worked for me may not work for you. And what works for you may not work for the next patient reading this blog. True freedom, understanding and healing comes with time. Experience. And more than its fair share of blood, sweat and tears. So I am here to say soar high my birdies, despite what you may have been told, you can do it. And don't stop searching, trying, seeking and finding until you do! The deepest desire of my heart is that every single one of you will find your wings, and believe you can fly again too.

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