Think Big

Today has been a rough one and its only 3 o'clock. I am bogged down by the immediacy of my problems, the crinkles of my day to day life. I am feeling angry and pissed off. Why are things so difficult? Why am I so sick? Why is this my life? I pulled my hair out while paying bills, further stretching those dishwater brown roots I cannot afford a $5 bottle of blonde dye to cover. I bashed people around in my brain, responding to arguments from long ago with the furry of yesterday. For some reason I am particularly sensitive and grouchy today. I did not wake up this way but now I am. Having Fibromyalgia so long has put me in a unique position, for I can tell you "cross my heart and hope to die" with all certainty I am either getting a flare or my period, which are really the same thing after a while. Damnit if I cannot guarantee it! So there I sit on the floor in my office packaging up a few orders, really trying to stop feeling sorry for myself.  It slowly dawned on me there was something missing from my day. Music. 

On went the reggae station and the first song was about praying to God. The next was the cry of an oppressed people dreaming of gaining freedom. Wow if I was not reminded then and there, unconsciously singing along and already feeling better, that life is hard for so many, oh entirely too many. Overcoming challenge is not unique to our species. I opened my mind and thought big picture, global, the eye in the sky. Today, that is what we have. There is love in my life and food in my belly and a warm bed to climb into at night. Really when you break it down, what else do you really need than that? Oh yeah, a reggae station.

Thanks for joining,

Leah

Forsaking All Others

Lately my husband and I have been going through a "growth phase" as I like to call it. It is something we go through every couple of years. I would imagine any long-term relationship does. Sometimes it is precipitated by a clash of horns for weeks on end, eventually erupting into a tangled lock of hurt feelings and emotions. Sometimes we can act like adults and get there in one piece. Its so much better when we can do it that way. But life is tough, long and hard. We are not always perfect, nor would we ever want to be. So we have turned off the TV and are talking. Lots and lots of talking. Sharing, understanding, explaining, forgiving and yeah, some pleading too. Whatever it takes to get us back on the same page, for we only function at half mast when reading from a different script.

I was watching General Hospital the other day and two characters exchanged traditional wedding vows. Or at least what WASP(C) American me perceives as traditional. It was a tender and sweet moment I had seen a gazillion times over. But for some reason there was a part that jumped out at me. I pondered this part, for some reason it struck me differently than it ever had before, made me think about it in an entirely new way. It was that part that says forsaking all others. I remembered saying those words when I got married 10 years ago. But had I done it? I was sure to keep the transparent vows intact; in sickness and in health (ha ha)*, for richer or for poorer (double ha ha)* and certainly the most paramount of all, till death do us part (tripple quadrapule ha ha!)*. For were you married if you did not? But I never paid much attention to that little forsaking all others part squeezed in the middle. It seemed automatic, like the others. Implied fidelity, common sense, right? But as I thought about it I wondered what did it even mean?

Forsaking all others. Such powerful words when dissected from the whole. Forsake: abandon, desert, leave, maroon, quit, strand. All others? All? Really? Meaning put nobody before our marriage? No, can't say I have done that, I had to admit. I had certainly put myself first, and every health problem I ever had. Basic survival, right? At times friends or family or my career have come first. That's just life, the way it is. But after thinking about it I am not so sure. Do we always have to settle for the way it is? My husband and I have been solitary through my illnesses. Yes we love each other and have been committed and present, hanging out and laughing and being there in good times and bad. I could not ask for a better person to race around this gameboard of life on. But at our core we are different people than we were when we got married. Tragedy, multiples of them, can do that. Actually shift the fundamental base of a person. And as much as we have walked side by side we have also walked alone, for we were both dealing with devastating situations from completely different perspectives. And in this weakened state the drama and unhappiness and needs of others have littered our union with  messy complications, further causing chaos in our lives. So I wonder, as we take this opportunity for a "tune up" so we can sync up once again and get back to being happy, can I become a wife who forsakes all others, placing no one or no thing above our marriage? Do I even want to? We will see. It depends if he brings me flowers tonight or not.

Thanks for joining,

Leah

*All the ha ha's are my bitter and sarcastic attempt to express I feel we have overcome MORE than our fair share of adversity, specifically in these areas.

Stop And Smell The Roses

In April of last year when I wrote all these blogs I am reposting every week my husband and I decided we wanted a different life. Working for things had gotten old and our values were becoming more about experiences, and passion. I got on a kick that I was going back to get my MA in English Literature. I had my pre-requisite classes all set up at the community college, had applied for financial aid and my appointment with ASU's English graduate department to assess my transcripts was scheduled. School started at the end of August. There was a part of my mind nagging me that I could not just fling myself into 12 units of coursework, for I may be feeling better but certainly still had Fibromyalgia. I was hoping financial aid could replace the meager income I earned as a freelance makeup artist so I could concentrate solely on my education and kinda stuffed those thoughts of reality away for another day.

Flash forward to today, a year and some change later. I finally got myself up and out of the house to blog among the land of the living. Yorkie & Porkie are great company, but I needed a bit of variety infused into my days. I wracked my brain about where I could go that is comfortable, does not involve eating or drinking and is indoors, for it is still 100 degrees out here in the good ol' Sonoran Desert. I decided to go check out that community college I keep trying to take classes at, hoping one day I will have it together enough to make it past the "W" period.

So I am roaming around campus, looking for a cool spot to land, observing the kids walking to and from class. Of course memory lane formed right under my foot and I reflected back on my youth, my community college days, my whole life still ahead of me. And I thought of what I had planned for myself last year and how different my life would be if I had not had those two strokes last July. And I was stopped dead cold in my tracks. That was not the way life was supposed to go. This was. You all, the blog, the Fibromyalgia awareness campaign and support site. That is the way life is supposed to go. I felt a little flutter of hope in my spirit that I badly needed, reminding me of the wisdom in taking life as it comes. Wow its so soon we look back on today with nostalgia, recollecting it, embedded in the past and only accessible from our memories. I took a big fat drink of remembering to stop and smell those obnoxious and proverbial roses along the way.  It tasted good.

Thanks for joining,

Leah

Turned Off The Music

I have always been a musical person. Three of my parents were musician so it pretty much insured that was gonna happen. I toured with some bands when I was too little to remember, I have been told. From records to tapes, CD's to ipods, I have grown as the technological boom was bleeding. When I think back on specific times in my life there is always a song there, floating in the back of my head, singing in tune to the thoughts and memories of days of 'yore.

But in 2005 my music turned off. It was not a conscious decision, one of choice. It was a fact, something that just happened. Everything normal in my life shut off, all but the will to survive. For I was very sick and there was nothing left over for anything but that. I turned on the salsa station for background ambiance when I was taking Spanish class a couple of years back, thinking any exposure to the language was only going to make it more familiar and easier for me. Eventually the pulse, the beat, broke its way through the stone walls Fibromyalgia had put around my mind. I remembered music's magical qualities, its ability to infuse your being with the story it is telling. I found myself dancing to the music coming out of my stereo. And I felt my mood lift because the music was happy. It felt good. 

Then I moved over to the reggae station because I needed some variety, and I felt the groove. The feeling you don't have when you are sick, depressed, angry, in pain, sad or broken-hearted. Which of course I had been all of because I was Fibro-socked on my ass. My husband had a gift card to Best Buy and surprised me a couple of weeks back with a set of purple earphones to match my purple mouse and laptop case. So I plugged them in, turned on itunes and sat in the middle of a busy coffee shop racing down the lane of my memories, each song a link to my past and inspiration for my future. It blared at me how necessary music is to my life, my heart and soul. I think the music is back on, folks. When I have felt sad or confused or even pumped up and excited I have put some music in my ear and felt the beat, the destination a song takes you to. And people and things are not annoying me nearly as much lately! Its almost as though it is a medicine for my perceptions.

Thanks for joining,

Leah

Anxiety, Pain, Bi-Polar & ADHD

This blog was originally published on 4/27/10. The reaction in our life from the decision to live our dreams, not our realities, seemed to have open a dam of emotions.

I feel amazed today. Amazed at how much we have woke up over-night and are changing the charted course. Re-writing the future. Abandoning the script and picking up another to put in its place. The realization of how stifling the road we were headed down really has smacked us upside the head and we are not going to do it. We are going to do what it takes to taste the freedom, the sweet nectar of living with passion, dripping down our tongues. Unleashing all this emotion, stirring up these deep and youthful longings and desires has given me...anxiety. I am bursting out of my skin. The realization that what is now is just not right is almost more than I can take. I am bouncing off the walls, very ADHD, unable to complete a task because there are so many more important ones to start! I can't seem to focus and the anxiety hurts as it courses through my body and out my finger tips, but it's a good kind of hurt. Maybe a necessary one? It's what has been suppressed for so long. But it feels like manic to me.

I found out some very interesting information about myself as a child this last weekend. How disturbed I really was. And that my penchant for self-loathing began long before I ever realized it. I knew I was a bruised and battered soul. But I never realized I was always a bruised and battered soul. A child flinging them-self down a staircase or holding their breath until they pass out is absurdly extreme behavior. But behavior that, none the less, explains a lot about the woman that child has become.

I have finally put the call in to my doctor. My Tramadol use is really high and not doing much to help the pain. Now the anxiety. This half-golf ball in my lower left back has me really screwed up. And the dancing spasming across the top of my back has returned. I am having a hard time sleeping and feel generally wild and bewildered. This sounds like a bona fide Fibromyalgia flare up, with some manic bi-polar thrown in, and a side of ADHD. It's been a while since this has happened. And now I must slow down and focus and get back on track. I am at a bit of a loss as to what to do next...

Thanks for joining,

Leah

The Fibromyalgia Spectrum

Recently I posed a question in The Fibromyalgia Fun House, our support site on Facebook. I am looking for more information about this Fibro-monster, but not what I can pull up in a quick Google search or another strange set of statistics gathered from who knows where. I want real honest to goodness patient based information from the patients I interact with every day. The real people that have this illness. For there has got to be some commonality among us! So I asked, inquiring minds wanting to know, if you were in a happy time in your life when you first got sick with Fibromyalgia, or were you super stressed and unhappy or things were not going all that well? I got a good cross section of responses, I would say about 70 by the time it was lost in the feed. And I did get some sort of a clearer understanding about how this illness strikes us differently.

See way back when I was on Prednisone to treat strokes I quickly realized one of the amazingly good benefits of that crazy-lady inducing drug was I felt no pain! It was a cruel joke, for Fibromyalgia was all but gone, but living life on steroids was not exactly my cup of tea either. I noticed some people did not have the same anti-inflammatory response to the drug that I did, though. Now Fibromyalgia is not supposed to be an inflammation-based condition. There is no actual damage to our ligaments, tendons and muscles, right? It just feels like it? So I asked, and the response seemed to be split.* About half the people experienced total pain relief on high-dose steroids and about half did not experience any at all. Well that seemed pretty big to me and I decided there were two types of Fibromyalgia, at least. Inflammation based and non-inflammation based. For it only seemed the rational conclusion. I got a similar response about that happiness question.* There were plenty of folks that were happy in life when Fibro fanny-smacked them off their feet. They mostly seemed to be able to pinpoint an accident or illness with a definitive start date they never recovered from.

But for those that could not say, for example, "I was very happy but in June of 1992 I slipped and fell and have never recovered," it was not nearly as clear cut. I read a lot of, "It kind of snuck up on me" and "I think I have always had it" type of answers from the folks that were indeed stressed out and unhappy, generally speaking, when they got their Fibro fanny-smack. I was one of them myself. I have always been a hyper-vigilant little birdie, the dominant personality type that gets Fibromyalgia. When I got sick I had a very stressful job which I was eating, sleeping and breathing. Then I went through a sort of "hell week" and it just got worse from there. So my rational conclusion was that there was an emotional link the unhappy patients recognized but the happy patients with sudden onset did not experience as significant. Again, just a sweeping generalization, and I am sure all of this has been explored by doctors and scientists with more brains in their left pinkie than I had at the height of my cranial development. But now I feel I have witnessed two very distinct and opposing symptoms of Fibromyalgia. Either inflamed or not, and either unhappy or not. Of course the biggest question in the room is why some folks get it and others do not, given the exact same set of circumstances? Maybe that is where the genetic component comes in, which would make it three distinct types, or a strange mash up of a few at a time in each person? Who knows! But maybe if they split up the patient population based only on the experience of specific symptoms, they may realize we are as different as we are alike, and actually get somewhere with that research. But with my luck I would be the one to have the type that does not come with a cure. Touche my friends, touche.

Thanks for joining,
Leah

*No formal survey was completed, and these generalizations do not apply to every patient that responded, just the author's impression of the majority.

Please Don't Say That Word

As those of us with Fibromyalgia know, the phrase "the F word" does not mean what it once did to us. Instead of summoning vulgar images or troubled times, it simply means pain. So yes, we may run around laughing at "the F word", because oh how we long for it to just be another bad word in a string of obscenities! Spoken in a curse when one hits their thumb with the hammer. Not an illness that has taken over our lives. Rules it, controls it. Go ahead and say the phrase "the F word" to a Fibrate. No images of copulation or a horrible car accident come to mind. Just that never ending pain.

Another one you must be aware if is "the S word". For that one is almost as bad as the F word up there. Spontaneous. Oh it used to mean fun and adventure, willing to take a risk. But now? Oh my, not now. Ever been accused of not being spontaneous, flexible, willing to go with the flow? Ever held culpable for being demanding, high-maintenance or self-absorbed if you do not? I sure have. And that go with the flow thing is a cause of contention for me. Because it is always somebody elses "flow" I have to go with! Hey, what about my flow? Why do they get to decide the flow? I want to be the one that decides the flow everyone else must follow along. But that requires planning and energy. Ha! No wonder...

And yet one more word that does not mean one thing close to the first thing your mind jumps too, "the D word". No I am not talking about the softest of all curse words, a subtle verb stirring up images of things we do not like and wish to condemn. I am talking about drugs. Because nary is there a Fibro patient around that has not danced with this devil in the pale moonlight. Sometimes 5 or 10 devils at a time, even! And yes, medications help, but they can also hurt. I made a decision years ago that being in pain was a far superior choice to being fat and crazy, my side-effects of the particular D word I was on to treat that horrible F word. I stopped taking it and realized how well it was actually helping my pain, so the search began for a new D word I could tolerate without those nasty accompaniments.

So as you see words can have a very different meaning when one becomes part of a club, an exclusive community. And different associations are attached to those words because of the commonality we share. So when you walk in my door and I look like the referee from a Monday night smack-down between a train and a plane, please please don't ask me if the F word is finally better today because of that new D word I am taking so we can go be the S word and have some fun! I just may have to say "F@#k you! I am damn sick and feel like shit. Go away and come back another day, when my F word may want to be S word with you, for maybe the D word will be working by then and I can actually tolerate leaving my house." Sorry folks, there really is no other way to say it!

Thanks for joining,

Leah

A Fond Farewell

I got some news this past weekend. Some news that I reacted very poorly to. Proceeded to cry all day and throw tantrums with the pot roast in the crock pot, in fact. But I won't scare you with the details of that one... See my very best friend here in Arizona is moving away. To California, where I am from. Oh as a woman and friend I am so happy for her! She is getting a promotion and spreading her wings and flying off into the great unknown. She needs to, is ready for this. And when seeking my advice last week in all honesty, as much as I hate to see her go, I had to tell her to. For she needs to go live her life and find what makes her happy.

But the girl and co-dependent in me is really upset! And there are about 75,000 reasons why. Which I had to feel all of, allow my body to release what my heart and soul were overflowing with. For some folks just cannot be replaced. And I don't ever know if I have had a friend as loyal and easy to hang out with as she is. We met at work shortly after I moved here. Rival makeup counters in the department store standing right across from each other. We quickly discovered we lived in the same apartment complex and both had small little boy dogs. So of course we became friends fast. Luckily so did the dogs. She gets my cultural references even though she is quite a bit younger than I am, and I appreciate that greatly. My husband tortures her like a little sister and she is endlessly willing to put up with me, why I don't know. She hangs out with me, flipping through magazines and watching General Hospital, not demanding an agenda every time we get together. Letting me half-listen to her stories while I screw around on the computer. Only pausing occasionally to shout out an irritated, "Are you listening to me?". But our bond runs deep. See she was the first person I called when my head nearly exploded in writhing pain so bad I wanted to rip it off. She drove me to the ER and sat by my hospital bed, watching Seinfeld reruns with me for hours while I was getting my strokes diagnosed and treated last year. She even brought my puppies to the hospital to see me on my birthday. So no, I am not likely to find a friend to replace her. She is one in a million.

But as much as I am going to miss her my sorrow was oh so much deeper. Because I was taken back to a time in my life when I was the one that had those choices to make. When there was unknown, a life yet to be lived, and it was mine. I set out on my course and was living it...and then I got sick. Suddenly life became about survival, and it has never stopped. It has just been one big fat scramble to keep our heads above water since then. By the grace of God we have survived and will go on. But remembering, and feeling, how much was stolen made me cry heaving sobs all day, until I got it out of my system and could move on. Xanax helping greatly with that process. So yes, I am happy for my friend. She deserves this. And I will most likely find someone else to hang out with again, someday. But most of all I am glad that I have taken the opportunities in life that I have, accepted the risks, sought adventure. And I am not done, oh no not at all. But allowing myself to feel that sorrow was important. It is valid and real. Does not mean I can't pick myself up and put Humpty Dumptiette back together again. Just means that each crack that forms whose seam is glued back together, actually makes me that much stronger.

Thanks for joining,
Leah

Today I Choose

Life is full of choices. Everything we do, every single day, is a choice. As choices are made options diminish and explode with equal velocity. It took getting Fibromyalgia and and having a complete emotional breakdown, followed very shortly by a total physical breakdown, to teach me this truth in life. See I had "chosen" to push my way through this illness, and those breakdowns were my inevitably. Because Fibromyalgia is simply not an illness one can ignore and hope it will go away with any success. At least that I have seen. When the ability to even walk to the bathroom upon rising from bed in the morning is challenged, the thousands of needles jabbing into your feet, turning into swords shooting up your legs simply too much, we figure out pretty quickly what having all choices stripped away feels like. And how awful it is. The loss of control. It is alarming! It is confusing. It is devastating. Heartbroken I sat, unsure of how to go on. What room did this world have for a sick me? And sometimes when the question is that basic, the biggest, most important choice of all is made. Do I fight to survive, or do I accept defeat and give up the fight?

Each day, each action, we choose. From the second I open my eyes in the morning my mind is a shuffle of choices. When that alarm goes off, do I exercise discipline and get up and run, my ultimate goal? Or do I succumb to the familiarity of my cozy, pain free slumber and abandon what my more-than-half-asleep self thinks is really important? I choose if I respond to my husband's short temper by laughing him into a better mood or poking sticks in his burning embers and feeling the wrath of the burn. Now I may try the laughing and he still does the burning, and yet again, I am given a choice. Do I yell back, and get frustrated, throw my hands up in defeat and walk away? Or do I give him grace, knowing I have some to spare at that moment and he will return the gift tenfold when I am in need of some forgiving myself. The choice is mine. But how do I respond to the pain of Fibromyalgia? Once again the choice is mine. What do I do to get through a flare? Do I take my most important personal relationships down into the gutter with me, or do I depart from the presence of those near and dear and learn how to deal with the grim effects of this illness on my own? Do I lash out, or get up and go out? When I was at my sickest I was a raging bitch to my husband, for about 2 solid years. I would pile on a pound of makeup and plaster a smile on my face, peddling lipstick and face cream as if my life depended on it, ignoring the physical symptoms that were blaring at me. Working took all I had and I would come home and fall apart on him. Scared, oh so scared. Angry, confused and really really pissed off, too.

For those familiar with addiction recovery, each day is each day, and the choice is for that day. Would this philosophy help us Fibromyalgia patients? Our illness does indeed flex each day, ebbing and flowing like the tide, without any of the regularity. Would the choice to flex with it help us in dealing with it, managing it, fitting it into our lives, not our lives around it? Am I angry, bitter, sorrowful, for all of my days? Or do I pick that speck of cheer-up when it randomly lands on my doorstep and grow that little bit of hope into a day, that one amazingly miraculous day where you wake up and feel good, even if it is just for a little while, and use it to build up health. The choice is yours friends. For today you do choose, we all do.

Thanks for joining,
Leah

An Extraordinary Life

This blog was originally published on 4/26/10. It changed our lives. It set us free, to admit today was not working and tomorrow was not what we wanted. We decided not to run away, but instead to change tomorrow starting with our actions now. Good thing, because 4 months later I had two strokes and really learned what the phrase "change my life" means!

 Can we do it? Can we break away from the chains of convention and make it happen now? Can we take the biggest risk ever and just go? Do we have the guts? Many people do it. Many people take the course of their life and manipulate it into an extraordinary existence, an unusual one. I must ask myself the question, "Is the future we have planned, and are working so hard for, really the one we want?" I don't honestly know that I can answer yes, that I am all that knocked out by it. I feel the damper of domesticated subservience in the true self already blanketing around my psyche. I feel we are twirling around on that hamster wheel and never getting anywhere, believing that one day we will get somewhere, but where that is we don't know. All the while what is plausible, what is possible, what is necessary, is never in reach. I have to ask myself the question, "What if?". What if we laid to rest our current goals, hopes, dreams, aspirations, problems, complications and frustrations. What if we sold our life, defaulted our debt and just picked up and moved to South America, or Mexico, or some unknown destination yet to be determined? What if we uprooted every minute dull drum of our existence and MADE THIS LIFE OUR LIFE? The life we choose and want, the life we laugh frequently and whole-heatedly in. What if we could break free from these chains that have imprisoned us for so long and choose the path less traveled?

We could spend our days knowing each other in a long forgotten way. We would discover the world and in turn discover ourselves. We could find peace in our spirit and the passion in our marriage that is beating dormant deep within both of our souls. We could take a major risk and rewind back to the people we were when we were 22 and first fell in love, but so much wiser now. We could go back to a time before we were so beaten up by the world. We could project and intend for a peaceful life of opportunity. Where the health of the spirit and soul prevail over the fulfillment of the ego and competition. We can insure that this amazing marriage, this amazing love that we have been blessed with, does not slip away into the tangle of civilized propriety. We could renew and revive and rekindle and actually achieve without so much sacrifice. At no point in time before has this been possible. But the glimmer of the edge of it is revealing itself and I think with some intense planning and preparation and a very quick wit it could happen. We could honorably discharge from our life in the USA and allow adventure and opportunity and passion to drive our next step, the next step to the life we choose. The life of purpose and intention not driven by what is expected or habitual.

I propose this: We pack up our life and the 3 of us get in our truck and head south. Free from worldly possessions. Free from sacrificing all the time in our lives to doing things we hate, things that don't make us happy and make us feel and act ways that are foreign to our true nature. Free from struggling and solitude and so many years lost trying to play the game. We will reclaim our lives at 34! Nestled into the cocoon of the unknown...of sleepy towns and small fishing villages. Of 3 week stops to earn a little cash with no set destination in mind. Of lazy days spent together enjoying the marvels of life, the beauty of the world. Of bustling cities and crowded markets and fiestas and siestas. A life that unfolds naturally and organically into a life of excellence and true knowledge of mind, body and soul. We will one day find our paradise. The place we truly feel at home, and we will stop to build an amazing life. A life of simplicity and passion and peace. And we will achieve all the greatness that is meant to be without sacrificing any more time that we have loving and sharing and laughing together.

Thanks for joining,
Leah

A Personality Disorder

Last week my friend and I were hanging out, talking about who knows what, when the topic of personality disorders came up. She gets on her nifty little i-pad and pulls up this test we can take online that will of course not diagnose a person, but may give you a little more insight to where your personality leans. So I washed the dishes and she quizzed me. Then she read me my results. They were wrong. So horribly wrong I figured she punched in my answers incorrectly or I had missed the point of the questions. So we did it again. Same thing, just a little bit more crazy all around. At this point I am having to admit I am lacking self-awareness, big time. For I never in a million years would have used the words "Borderline Personality Disorder" and "Leah Tyler" in the same sentence. Now I am in no way saying I have BPD, but according to this test it is a strong part of my personality. And this perplexed me beyond measure.

Actually, I did not even know what it meant. "Borderline personality disorder is a condition in which people have long-term patterns of unstable or turbulent emotions, such as feelings about themselves and others. These inner experiences often cause them to take impulsive actions and have chaotic relationships."* Okay fine, I thought. That's not so bad. I can admit I am up and down, quite impulsive and have many people in my life I would characterize as "difficult". But that was not my fault. It was them and not me! Wasn't it? And after chewing this fat around for a few days I realized I could pay attention and actually learn something here. If a great many of my relationships are indeed difficult, does that not make me at very least a contributor? If I have worked very hard over the last 35 years to get my emotions and feelings contained so that I am not a radiator cap blowing off an over-heated engine, does that not mean I am emotionally unstable? And yes, going to buy a pot for a palm tree and coming home with a puppy could definitely be considered impulsive, even if we are rather fond of Porkie and very glad she is ours.

Forgetting the others I focused in on that "have chaotic relationships" part, knowing it is the most volatile and disruptive to my health and life. I was recently blabbering to a cousin of mine and in his efforts to fix all the junk I was complaining about he came down pretty hard on me. At first I was very offended, feeling he hadn't the right or the knowledge to do so. But as we talked longer I realized he only attacked what I had given him. My feelings of inadequacy. My perceived failure to properly motivate myself or successfully execute my ambitions. Basically, my frustrations born from not being perfect. That damn type A just won't die! See in my Fibro-world there is no denying I have worked my ass off to get where I am. But to the outside I don't have a myriad of accomplishments to brag about, what people usually rely on to claim success. I have no PhD, successful business I built from the ground up or 5 kids shaping a better tomorrow. But I was disabled and now I am not. I was trapped in a body full of pain worse than death. And I no longer am. I could not leave my house for more than 20 minutes at a time, and now I can go for nearly as long as I desire. And all of this has happened in the last 6 years! So instead of stewing around mad at my fight being slighted, my success diminished, I realized the only reason he was able to criticize me and get me so worked up is because I invited him to. By bitching and moaning about my neurotic shortcomings I opened the door. So yes,  how can I not conclude I am greatly contributing to the difficult relationships in my life by continuing to seek approval where none will ever be found, then getting angry and defensive at the outcome. I am so unbelievably tired of interpersonal conflict and this eye opener, dose of cold hard truth, woke me up and made me realize that like everything else in life, if I want it to be different I have to change it. And finally, after 35 years, I decided if anyone is looking for perfect you have got the wrong girl over here. For never will I be, nor will I strive to be, that boring.

Thanks for joining,

Leah

*U.S. National Library of Medicine

I'm Tired Of Technology

Dear People That Don't Have Fibromyalgia,

We, the patients that have been diagnosed with Fibromyalgia Syndrome, would like to draw a line in the sand. Collectively we don't have enough energy to deal with the rapid pace technology is advancing at. And while we would never wish for technological genius to slow down, we need to set up some ground rules here because it is getting out of hand.

Now please know we don't love you any less or think you are anything but the wonderful, caring and kind person you always have been. But we simply cannot have the same expectations when it comes to keeping up with our devices. When a text comes in, if the phone is not sitting right next to me, I am highly unlikely to drag my sore ass off the sofa to see who it is, unless I have a dependent or partner not presently home and it could be them. When the house phone rings, as I am struggling to make my way to answer it, I am too slow and the answering machine picks up. You hang up and call the cell phone immediately. Well now I have walked over to the house phone, and hearing the cell phone ring in an entirely other part of the house, I try to make my way there, getting very annoyed. Oops, missed it, right to voicemail. Now if I try and call you back I will go right to voicemail myself because you are now calling the house phone again but at this point I don't really care who you are or what you want and sit down all worn out from running to opposite ends of the house to catch that ringing bastard. So you leave a message, finally. Please know I am very aware you are trying to reach me but I have just given your bouncing phone calls all the energy I have for you today so will call you back another time.

When I finally drag my sorry self over to the computer to check my email, of which there are many messages because that is just how email is, I may be able to get back to you, or not, depending on the level of catastrophe I have to rate this email encounter at. And if I do get back to you and you then get back to me immediately, I really need you to understand I may have completed my dive into my inbox and have moved on to do something more critical to my survival, like cooking food. And Facebook. Ahhhh, Facebook. We really need to chat about that one. You are my "friend", but since I have to spend part of my day farming farms and cooking cookies because to skip it would be to take out the only part of my day that actually gets my mind off my pain, I may not be as up on your posts or returning your messages as quickly as the next person, but I will eventually get to it. When both my physical and mental state allow. If I post on some support page or another and it shows up on my wall, or I happen to mention I feel like I got stuck in the middle of a garbage truck fight, you get all pissy and start telling me what to do to get better. At this point what I need to do to get better is get rid of your pissy opinions. So as you can see this entire...network...is seriously flawed and definitely not Fibro-friendly.

So I may or may not know you have called, texted or emailed. And I may or may not return your chosen method of communication in a timely fashion. Sometimes it can take weeks. Sorry! Sure this is not the first time I have let you down. But this whole calamity, this person on demand mentality, is becoming a huge hindrance and we just can't have any part in it. So please, people that don't have Fibromyalgia, go easy on us. But know that if we actually take the time out of our lives to reach out to you unsolicited, we expect you to pick up on the first ring or return that text or email immediately. For what we have to say to you is very important.

Thanks for joining,

Leah

Taxes, A Vacation And A Funeral

This blog was originally written on 4/19/10. Glad to see some progress, at least with my dedication to writing!

What a whirlwind week! My husband was home on vacation this last week and he sure kept me busy. All my indulgences were under a microscope so it was nose to the grindstone! One of the things that did not quite make the list of mandatory was, I am sad to say, my writing. Clearly something that I still must make a priority, so hopefully the structure and organization I have been pining for will anchor it. But I was actually quite productive and got tons done and it was great to have him around for 9 days. We got to hang out a lot. I am very lucky that I still really like the person I married after all these years. He got a chance to unwind and de-stress and get some priorities focused. Oh and sleep, the poor guy! I do believe he is truly finding his way. The living hell that is the impact of this disease on our lives all these years later is just now leaving the "building" stage and beginning to recede. This has been long and arduous!

But I digress... He did gain an actual appreciation for what it takes to run our lives, household and finances. He was quite helpful with things and at one point looked at me and said, "Wow, you really are busy!" Score that point, girl! The taxes were due. Boo hoo hoo hoo! But we have lived to see another year and are still standing. Building and coercing and caressing the life we want out of the life we have. But really, at the end of the day, what choice do you actually have? Lie down and take whatever comes your way? Allow the bullshit of life to define your experience and therefore your existence? Hell no! Fight back and don't let up until you see the mold you are casting for your life really start to take shape. Life is fragile and quick and only experienced fully by the takers. The risk-takers, the chance-takers, the passionate!

I am very sad to say that my uncle passed away last week. He was only 66. It was surprising but not unexpected, if that makes any sense. The obituary is very dear and hopefully his wife and 7 children will provide him with an honorable and memorable farewell. Wow life is short. And it is interesting how the sum of a person boils down to what we leave behind. The relationships, the legacies, the familial bonds that transcend generations. The mark left on those known, society, and the world as a whole. What a person leaves behind is a true reflection of who we were as people on this earth, what we really believed in and felt. Good or bad, revered or alone, powerful or poor, its a tell of the heart of a person. Upon death all the pretense falls away and the memory that is left could quite possibly be the first real glimpse into the complex and true depth of that person's soul.

Thanks for joining,

Leah

Wisdom In The Cliche

Life is too important to be taken seriously. ~Oscar Wilde

There were many many years where I would have rolled my eyes at ol' Oscar up there and gotten irritated, finding no humor in the phrasing. I found no humor in anything, quite frankly, because I was in severe constant and pervasive pain throughout my entire body at all times, day and night. So that pretty much negated fun, humor or anything anybody else really wanted to be around. But no one wanted away from me badder than me! Unfortunately no pill, exercise or tub of hot water in the land would make it go away. The pain that is, not me. The shadow that cast around my aura was dark and ugly, for I was tentatively swimming through murky waters with nothing but fear and survival to guide me. Oh but that survival of the human spirit is strong, because somehow survive it I did!

It was not on my own strength, nor that of my friends and family, though without them it would not have happened. It was not a brilliant doctor or a miraculous medication, though without those, too, it would not be possible. So what was it, tell me please, you must say! And all I can tell you is it was a quest. A never-ending quest to stop feeling worse than death! Because the woman that writes these words to you today is not the same woman who was given a Fibromyalgia diagnosis and left to figure out how to get better all on her own. That woman was crazy, desperate, hopeless. I had to knit decent medical care together like a patchwork quilt. During a fabric shortage. You would not like the woman I was back then very much. I know I didn't, and battled her out of me any and every way possible. It took a long time and an unwillingness to quit, I suppose.

I was recently chatting with a friend, someone a few years younger than me. She was giving me her schedule of life to come. Get married at this age, have a baby at this one. Second baby when I am this old and then...I kinda tuned her out at this point. I wanted to shake her hard and tell her life does not work that way! You have to take it as it comes, it is not something one can dictate or plan with any certainty. You make the best choices you can at the time in any given situation and hang on tight! But perhaps I am wrong and that is just how it happened to me. Maybe life can be a series of calculated choices falling right in line with the expected plan. And we can run around all uptight and make sure life stays on that plan, taking ourselves far too seriously. Or we can do it different. Seems to me, my fellow Fibrates, we don't have much of a choice. We have to do it different! All I know is I could not tolerate living life sick and have done everything possible to not have to take it all so seriously, because it just hurts so damn much. The first step there was believing it was possible.

Thanks for joining,

Leah

My Time, My Choice

In the vaguest sense of the word I had a bit of a family reunion this past weekend. A gathering of many I have known through the years and had not visited with in quite a while. And while it was good to see all, it was not a particularly pleasant visit. For I was put in that wonderful scenario we Fibrates are especially fond of: Family Obligation. Now we may talk about setting limits or putting ourselves first or refusing to allow others to treat us in a way we don't deserve. But the reality of life is there are simply occasions that come up that must be tended to. And we are not the star of the show. Nobody is considering our needs and to expect them to would, quite frankly, be overwhelmingly self-absorbed and completely out of touch with reality. So yes, every so often important things happen to those we know and love. Weddings, funerals, birthday parties, important anniversaries, you name it, that throw a big fat wrench into the carefully constructed lives of a Fibromyalgia patient. 

We traipsed around town all weekend, racing from place to place, activity to activity, obligation after obligation, with Yorkie & Porkie in tow. I quickly slipped from flare to LMA, popping pills to survive the pain all that activity stirred up. Porkie stopped eating, my little routine girl was so stressed out because she had no idea what was going on. We fulfilled our obligations and managed to have a bit of fun, too. But you have never seen 4 souls happier to hit the road home than the motley crew the four of us made that night. And for much of the ride home my wheels were turning. How, my dear friends, can we do better? What do we need to do so we don't become the sacrificial lamb if we choose to participate in life with those we know and love? For if home is where the heart is then I belong right here, sunk into my sofa, snuggled up in my bed.

And that is where it lies, I decided. I have to create my home base away from home. A place where I can have some down time, crash between activities. And all those people I was running around to see, jumping through hoops to make happy, I can stop doing that, too. And start expecting people to come to me. Some will and some won't, and others will marvel at what a selfish little twit I have become. Let them, I say! For that sure beats feeling the way I did at the close of those frenzy filled days. Basically I can stop worrying about the convenience of others, or what they will think of me, and do what lots and lots of other people do without even thinking twice about it. Because they are too busy taking care of themselves to even get Fibromyalgia. I can take care of me.

Thanks for joining,
Leah

It Is Not Possible

I was re-potting some plants and watching The Kardashians on Saturday. It's the episode where Kim develops a rash on her legs and goes to the dermatologist. She has psoriasis, family hereditary.

Kim: So what can I do to get rid of it?
Doctor: Well, its not curable, but it is controllable. The #1 way you can help yourself is to lead a slower paced, less stressful life.
Kim: That's not possible.

At this point I dropped my gardening shovel because I needed to clutch my side, I am laughing so hard it hurts. Anyone out there remember saying that, upon receiving a Fibromyalgia diagnosis? I sure do. And just like Kim (unfortunately sin the millions of dollars), I believed it to be true. For there was no way to live my life, slower and less stressful. It just was not possible. But I was not a celebutante with a rash on my legs. I was a working woman with pain and fatigue so bad I had to quit my job! And then the one after that, and the one after that. For the longer I lived with it, the worse it got, until one day I simply could not go to work at all.

I was not dying, but certainly not living either. I was existing. From one pain and stress filled day to the next. Trying to juggle all the balls in the air I had been given in life, and the few I willfully picked up along the way, too. And as I would try and throw one ball out, another was thrown back in. See all, todos, the circumstances in life that led to this breakdown of my central nervous system came crashing down on me. And then there were all the balls left to juggle, but no one was there to juggle them. Blood, sweat and tears. Lots of 'em. And I was able to army crawl back to the pile of balls, struggle to sit up and pick one up. For that was the best that I could do. Eventually I started tossing it back and forth between my hands. A little while later I was able to pick up a 2nd ball, and tossed both of them back and forth. And so it went. But with every couple of balls I picked up, I would always drop one. Then I would have to keep juggling what I had while concentrating on bringing that dropped ball back into the toss. Now I am juggling about half the balls I was before and am amazed I am here!

That is why its so hard for me to explain this to healthy people. They just don't get it. For how do you explain, truly convey, how hard it is to be forced to learn how to do nothing? And then when the simplest, most taken for granted activities become something you can do again, the joy that brings! I could do my laundry again and I was ecstatic! Lets not even talk about taking the dog on a walk. Oh and when I could finally return to work I was a very grateful woman. Very grateful indeed, because it meant I could leave my house for more than 20 minutes at a time. And please don't take this the wrong way, I am in no way trying to be spiteful. But can't one of these reality show personalities get Fibromyalgia? So the world can see someone they already know, succumb to this disease? Well folks until then, I guess public education is up to you and me.

Thanks for joining,

Leah