Friday, July 29, 2011

Happy 35th Birthday To Me

I am turning 35 on Monday. As I sit here and reflect on this odd-numbered yet somehow round marker of my life, I mentally flip through my memories. I have a slight recollection of what it felt like to be that Southern Cali beach blonde baby building sandcastles with a white stripe of zinc over my badly burned nose. I smile when I remember the Slip n' Slide we would hurl ourselves down for hours in the backyard, the summer days of childhood lasting forever. I think of all the church choirs I sung in and school plays I performed in, marking my passage through time. Ballet recitals and flute rehearsals. I feel with strange accuracy the juxtaposition of the two households I was raised in. One was fun and messy and spontaneous. The other safe, ordered and dependable. I think of the girl entering junior high, so incredibly scared and self-conscious, grasping no semblance of an identity of my own. I ponder the pain that must have hit my heart early, for I don't remember it ever not being broken. And my mind wonders of the cold hard world we are all eventually shoved into, and wonder when I was first shoved into mine?

I think of the ballsy teenager that knew it all, rolling my eyes at my parents as I lied to get my way. I recall the high-school senior leaving the safe security of childhood, having to figure out what on earth to do with myself. I fondly remember my dad driving me off to college and setting me up in my first apartment. He put together so much IKEA furniture he still curses that trip to this day! I laugh when I think about the young woman of 20, the college party in full swing. Meeting a man that stuck around long enough to allow my heart to thaw into loving him. It only took him 2 years. What on earth did he see? I think of the blushing bride I was on my wedding day, and how I have grown into a respectable wife.  Of course I have to recall my domino trail of health problems, but you have heard all those before. 

But what presses on me the strongest are two pivotal conversations, when God yelled loud and long to get my attention, and had to fight me pretty hard. I think of the pancreatitis hospitalization in 2007 and how I became aware beyond the shadow of a reasonable doubt I would not live past my 35th birthday if I continued to be the stressed-out super-sick super-freak I had become, shock-waving in pain and popping Percocet to get out of bed in the morning. I knew something had to change. For I wanted life! And then the zaps to my brain last year. And again my life was in question. And again I knew. Stop. Get a grip. And finally, for your last warning, CHANGE THE WAY YOU LIVE YOUR LIFE! And I did. And here I sit 100x healthier than I was last year at this time, with my umpteenth and final major health crisis behind me. So yeah, I sit and reflect, and think of the girl to adolescent to woman that I have become. And I thank God my growth is not done. So here I am, I am 35! And I think I just now hear the starting gun!

Thanks for joining,

*In observance of this momentous holiday of all holidays, the next new blog will publish Tuesday, August 2nd.

Thursday, July 28, 2011

Thank You Prednisone

I always thought steroids were bad. Of course the kind that muscle-heads juice with, but the kind doctors prescribe as well. Through stories gathered from friends and family (long history of asthmatics), I had been taught to warily avoid them. Weight gain, facial hair, tantrums in public. Oh yeah, I had heard plenty of stories, with enough bad details, that I actually felt justified in challenging any doctor trying to get them into me. So justified that last July 28th, on the 5th day of having what can only be described as the worst headache in the entire universe, ever, I scoffed at the ER doctor when he informed me the spinal tap he was about to perform would inject a small amount of steroid into my system. My husband was sitting right next to me and looked directly at the doctor, giving his verbal permission and overriding me right in front of me! I looked up at both men while lying drugged up on that gurney and knew there was no getting out if it. Fine. Just a little bit of steroids for the spinal tap. Which kinda freaked me out in and of itself, but I just did what I always have when faced with ER's and hospitalizations. Ignored the gritty stuff. Pulled out my master compartmentalization technique. Its much easier to do while hooked up to a push button IV of very strong narcotics.

I honestly thought I was going to have 1 of 2 outcomes during the two intensive days of extremely invasive testing. Either I was going to have brain surgery or leave there with a death sentence. Tumors or an aneurysm, something along those lines. I decided if I was lucky enough to go the brain surgery route I was going to buy a VERY expensive wig that was my dream-hair, for surely at least half my head would be shaved. But really all I could do was pray. I was so unbelievably scared. I had to put my faith in the fact that I was not the master controller of my life, and that my purpose here on earth just may be done. I felt peace for myself, confident for my spirit in the afterlife. But looking at my husband and mother's concerned and attentive faces 'round-the-clock, my heart ached for their loss. For their love was shining all around them, so bright. And I knew I played such a large part in both of their lives. It was heartbreaking to imagine their lives without me in it.

So imagine my surprise when my world-class neurologist came into my hospital room, pulled out a chair right in front of my bed and sat down. He told me I had a diagnosis.  I survived 2 strokes caused by RCVS, a subset of Vasculitis, and I was going to be fine! It was reversible with treatment; steroids and calcium channel blockers. I was never so overjoyed to be given anything in my life as I was that Prednisone! I was quickly moved out of ICU to gen-pop and finally sent home, high as a kite from evading death, and what I now know quite personally as the drug from hell. I have bitched in many a blog about Prednisone and all the wacky and terrible things it inflicted on me. But I am going to tell you what Prednisone did do for me. It gave me guts. It gave me energy. My need to sleep any more than 7 hours a night was gone. I didn't have Fibromyalgia pain anymore! I felt incredible! My nails were long and strong for the first time in my life. Exercise was a breeze, I was darn near a contortionist! I was en fuego and I could not sit down! So I published this blog and started all sorts of awareness efforts in the name of Fibromyalgia. My purpose here on earth certainly NOT done. Then when I came off that steroid the sheer burden of responsibility I found myself in kicked my ass. And now I have balanced out and am quite pleased with what my crazy-self started. So no, I would not trade Fibro for Prednisone. Give me an illness to manage any day over a psychopathic drug that turns you into a crazy-speedy-freaky hairy fat person! But it saved my life, in more ways than one, and for that I will always be grateful.

Thanks for joining,

Monday, July 25, 2011


When one's health falters, and the doctor their insurance plan will pay for can find nothing wrong with them, many patients seek alternative treatments in the hope of finding something, anything, that will take their ailments away. There is no shortage of snake oil out there, plenty of people selling the "cure" to Fibromyalgia. But they have only made us doubtful and bitter. People aggressively insisting that if you don't try their product you don't want to get better. It is extremely unpleasant to deal with this. There are many other options folks may try. Vitamins and supplements, hormones and injections, to name a few. Acupuncture, chiropractic, massage, really too many to list. When I became disabled from CFS and Fibromyalgia I searched for a support group, a network or association, anyone that had been through this and knew what on earth to do! I talked to one woman who used to run a CFS support group and she described her symptoms to me. My first thought was OhmyGod another person on this planet knows what I am feeling! But as she went on and I went through my list of questions I realized that over the last 15 years she had kinda just let this overtake her life.

I asked her about The Fibro & Fatigue Centers my internet research kept turning up. She brushed it off, saying it was just a bunch of supplements and costs a lot of money. As I drilled her for answers, something to do to start to get better, anything to change the hell I was imprisoned in, she fell very short. For she was sitting and waiting for modern medicine to fix her. So I went to the specialty clinic, and oh my soul, supplements galore! So many supplements! And this one can be taken with food but this one on an empty stomach and this one 2 hours before you can eat for the day and that other one that was specifically between lunch and dinner and this one over here you have to take, then eat 30 exact minutes later...oh it was maddening! But I did that for about 6 months, putting myself into significant debt as I actually started to feel better enough to return to my retail job. Then we did the anti-virals and anti-fungals and anti-biotics and I really started to feel better. And ever since then I have been a complete freak about taking my supplements. Religious, almost to a fault.

They are a lot less complicated and significantly less expensive now than they were back in the early days. My immune system is properly supported with vitamins, minerals, amino acids and a minimum of herbs. But I still spend enough on them that when money gets really tight sometimes I have to lapse. And that happened a few weeks back. I went without my supplements for a good 2 weeks and was in  horrible awful misery. I hurt. I was angry and emotional. I did not sleep well. Did I mention I hurt? Exercising was grueling and that EBV, oh it just waits for a break in the protective barrier to sneak up on me! Achey, sore throat, swollen glands, sinus pressure, headache, you know, the good ol' fashioned afternoon flu! Cold-sores all over my mouth, thwarted by the anti-viral I had to go on. But payday gratefully came and I placed my order and once I was back on them for about a week I felt better again. Much better. So I guess I am not wasting that money. I sure wish I could spend it on a pedicure or massage, or even an overdue bill for crying out loud! But as we all know way too well, you really can't put a price tag on health.

Thanks for joining,

Friday, July 22, 2011

The Price Of Technology

Apologies for not posting on Thursday. Blogspot was misbehaving...

Does anyone here remember dial-up internet? And how slowly the information would load? Yet how amazingly fast it was compared to looking in a dictionary or encyclopedia, driving to the library or a store. But once this high-speed thing came out, dial-up paled in comparison. And slowly but surely, one by one, most have transitioned over to fast internet access. I am sure there are still a few Earthlink subscribers out there that haven't the want or need to upgrade. Slowly watching their web clicks upload, their hair inching out of their scalp at the same speed. And it popped into my head that we, my Fibro friends, are dial-up in today's high-speed world. We still try with all our might to get the job done. Sure its a little slower, okay a lot. And quite a bit of chaos and disorganization, no seamless transitions from activity to activity. We need to rest before we launch the next charge! There may be painful "half-days" when we are between loading large tasks like a highly pixelated picture. And you have to sit there and watch our incompleteness drive us crazy to distraction. There is a lot of waiting around for us to be ready. Asking us to do something does not mean we start it the second we are asked. It means it goes in the circular file that exists above all our heads, a forever to-do list rotating and intermittently remembered, loading just as slow as the third frustrated click of the "back" button does in that dial-up world.

I remember a time before technology ruled our lives. When the only phone number a teenager had was their home phone number. When you had to make plans before you left the house, and actually seek out the people you are meeting at a specific destination. There was no "We are in front of the Gap" quick text on the cell phone to guide you. Getting directions, remembering where you parked your car? There weren't any GPS navigation guides or key fobs stimulating a beeping horn with each press, guiding you to your automobile as a dolphin glides through the midnight waters, sonar detection leading the way. Remember when every person you knew did not have immediate access to you at any given time? Then we got cell phones and ended that. How about when a vacation from work actually consisted of a vacation? Not a mandatory morning check of your email to avoid imminent disaster upon your return from a well deserved rest. And then our cell phones started getting our email. And social networking "apps". And every single person we knew, be it real life or virtual, could now get in touch with us at any given time, day or night, anywhere in the world. And they actually expect this, too!

There are many advantages we are lucky enough to experience living in the eye of this technological revolution. Hell, I could not even write this blog without Google, many many searches discovering information, confirming or correcting it so I don't come off like a bumbling idiot with no knowledge of the world at large (I hope). But we have given up a lot as well. The lines between work and personal time are horribly blurred. Privacy, really, need I even go there? Instant accessibility makes the rest of the world, the natural order of things, unpleasant and slow. Our society has become impatient and terse, always on the go, fast fast fast. I recall my "career" days and how I would be walking from place to place, fuming because I did not have time to be walking! I needed to be THERE! NOW! There are so many patients with Fibromyalgia, and just in living with this illness we have touched the lives of a great many others. And given them a taste of that slowed down lifestyle long forgotten. It is annoying and inconvenient. We are judged and left out, confronted for our "laziness" and whispered about behind our backs. So please my dear friends, remember, you are confined in a body that is sick. But you still have everything you ever did to offer. We are not going the way of the dinosaur or dial-up internet. We are actually making the world slow down and examine its flaws, the flaws that knocked us flat on our asses and made us so sick. Oh yes, we still have plenty to offer. It just may come a whole lot slower, which I actually don't think is the most terrible thing in the world.

Thanks for joining,

Tuesday, July 19, 2011

Yorkie Bear

Today is one of those days where I just can't get it together. I am tired and scattered, sore and emotional. And I just had a 30 minute conversation with my dog. Now Yorkie is much smarter than your average bear, and dramatic and manipulative to boot. He sat here next to me and whined all morning until I got up and asked him what he wanted. He led me out of the office, through the living room and to the dining room table. He proceeded to look at the table, look at me. Look at the table, look at me, with quick jerks of his head. So what do I do? I concede! I take every item off the dining room table one by one and open each bag, ruffle up each item of clothing for him to sniff, only giving into this because he is always right. He will sit there and pester you one day, totally out of the blue, about a tiny little ball that has rolled under the sofa. It will have been there for weeks but when he notices it, he has to have it. And I am always the one to get it for him. After hours of listening to him whine under his breath, giving me innocent looks when I tell him to knock it off, I will get up and let him lead me where his treasure awaits. Yorkie is so skilled at this fine art of detection and will hone in on a bag of training treats long forgotten about in a jacket pocket. And pester the crap out of me until I go to the closet, search each pocket and finally find the bag of long-forgotten morsels. Then I have to tell him loudly and firmly "NO", because they have gone bad. He will walk off and plop down with a sigh, either his back to me or gazing up at me through the most pathetic puppy dog eyes I have ever seen. I am not that mean of a mommy and usually he will get a fresh and wont-break-the-dogs-teeth treat shortly thereafter. I kid you not every time he does this there is some long forgotten treasure he turns up. Is it possible that not only my smart-phone, but my dog as well, are both smarter than me?

But earlier in the morning, right when we first woke up, I had an emotional encounter. And I cried. I wiped my tears from my eyes to see Yorkie standing below me, ears back, tale quivering and low, those wide wet eyes letting me know he is there to give me love. See this little dog is half the reason I fought so hard to get my life back. The other half was my husband. But Yorkie was there for me in a way far beyond what I ever imagined a dog was capable of. He would let me hold him as I rocked back and forth on the floor and cried, ever incapable of comprehending what the hell had happened to my life? He was there as a little puppy, sleeping all day with me, his terrier spirit not nearly as strong as his loyalty. He was my buddy, my pal, the guy who I kicked it with from morning till night. I had to force myself to walk down 3 flights of stairs to take him out on days that would have strung into weeks I was too sick to leave my house. I set my goals of walking around the complex to around the block to around the neighborhood, for his benefit. Eventually we could take weekly trips downtown, walking 5 blocks to go to the bank, library and post office. He got good at jumping into his bag and just lying there, undetected, inside the stuffy official buildings. Because he knew a trip to the yuppie puppy shop was on the way home, and he would be getting a big tasty treat.

So this leads me back to the dining room table contents, the evidence of a weekend of not straightening up spread out on the floor. And as I open each bag he duly sniffs, then backs up, waiting for the next one. Sniffs and backs up. Until I get to the bag we put our stuff in for Friday night scotch and cigar at the hot tub (yes it was not over 100 degrees so I had to go in the hot tub instead of the pool). His little tale starts quivering rattlesnake fast and he gets really excited, emphatically moving the bag contents aside with his nose as he burrows, indulging the reason for his pedigree. And buried down way at the bottom under all the other junk is the tiny remnants of a bully stick the dogs get every Friday night down at the hot tub. I guess he had not finished his, or Porkie had not finished hers, and we grabbed it as we were gathering our stuff and forgot about it. So yes, this is why when he actually pesters me enough to get up and get something for him, I know there is something hidden. I just sometimes have to work really hard to find it.

Thanks for joining,

Monday, July 18, 2011

Saturday Night Lights

On Saturday night we went to a friend's birthday party. My friend, lets call her Lisa, is one of the very few friends I have made living in Arizona. We worked in the same mall, then she was promoted to a new location and I started freelancing. So our once or twice a month lunch dates dwindled off. We hung out as couples barely a handful of times, then I went through my getting-off-Cymbalta drama and she had a baby and our friendship just kinda went dormant. Of course Miss Prednisone over here picked up communication with her after the strokes, and we have been hit or miss ever since. My attendance record at actually keeping our dates extremely sporadic. So when she text me a few weeks ago about her birthday this last Saturday night I accepted, really really wanting to have a social life again!  But after staying up till 3am Friday night and running errands all day Saturday, the last thing I wanted to do at 10pm was get it together and go to a bass-booty-bumpin' nightclub. But I did and even wore heels! So off we went, being so old and out of touch we were there before they even started charging a cover. 

Lisa looks great, very happy, lots of friends around. And she is really thrilled we came. And I am glad we did too, for she is a good friend that for some reason still wants to be friends with a flaky Fibrate. Why? Who knows. The DJ is really good, but so flippin' loud you can't hear anyone unless their mouth is shouting 1" from your ear. And there is a crazy light show pulsing to the bounce of each beat. You can't really talk so we sit and slowly watch the dance floor fill up. The eye candy, oh, it was delicious! But after a while the whole sensory-overload starts piercing my brain, causing fried-out parts of my cerebral cortex to thump awake. I started to worry about having another stroke. Not like there was any correlation, but if I felt concerned it was SO not worth the risk. I tell my husband I need to go, the music is too loud and the lights too intense. Ever attentive and concerned, he had us up and out of there faster than the words were out of my mouth. We depart to see a long line waiting to get in. I really wondered if I looked old? Kinda old or really old, as I recalled the clubbing days of my early 20's, thanking the good Lord in heaven those days are far behind me. 

My husband had 2 drinks, I had none, so I drive home. We get into the car. My brain is on such sensory overload and the streets are wild with people and cars everywhere. So what does my husband do???? Turns on the radio, says "Oh wow, this is the song they were just playing in there!" and pumps up the volume! I break in the middle of the road. I did not mean to but my brain stopped functioning. He starts screaming at me to drive and I barely realize what is going on until I slam the off button on the stereo and can finally determine there are no cars in front of me and the light is green. Thank God there were no cars behind me, either. So I get ragingly pissed off at him, feeling like I am dealing with an inconsiderate and selfish 12 year old. I could not believe how blatantly insane it was that he did that, put me right back in an environment that he had just so gallantly escorted me out of because of sensory overload. He thinks there is no inevitable or obvious connection here. I get all bent out of shape and bitchy and uptight on the uneventful continuation of our ride home. But we have been committed to really communicating and growing our relationship, not settling into the mid-marriage bitterness that can swallow the entire union whole. So we talk it out, get home, put our pajamas on and sink gratefully into the sofa, snuggling in the quiet calm comfort of home.

Thanks for joining,

Friday, July 15, 2011

How Am I Supposed To Exercise When It Hurts To Move

Yesterday my step-mom forwarded me an article about a woman with Fibromyalgia who walks half-marathons!* She has found her salvation from the pain and anguish this illness causes in walking. The warming of her muscles and loosening of her joints as she marches through the pain eventually calms the pain. As someone who has recently embarked on an exercise program I can tell you two things. This walking half-marathons thing actually can be done (not that I have done it or anything) and it is a very long and slow process to re-introduce exercise to your pain filled Fibro body. It takes years to get to the point that your pain is managed with exercise and little else. And as we agreed way back in the beginning of this whole blog and Fibromyalgia Crusade, not every patient will have this experience because Fibro is not a one-size-fits-all illness. It has different etiologies and outcomes depending on each individual patient, their co-mingling conditions and the actual root cause of their illness. Also, and please hear me here, if you also have Chronic Fatigue Syndrome, the sheer exhaustion from walking up a flight of stairs alone will impede you from cardiovascular exercise. At least it did me, for many years.

While it is great to hear about a Fibro sister that has found a way to manage her pain in a positive and healthy way, it also puts an immense amount of pressure on the rest of us. How many times have we been shushed out the door of our doctor's office, clutching a prescription for a drug that mysteriously "calms" that overactive central nervous system and a mandate to exercise more? A fellow Fibro-advocate sister was just on Dr. Oz (click here for the video), and asked him for his advice in managing Fibromyalgia in a natural way. His knowledge of Fibro and how it affects the body was pretty right on, I was quite pleased to see. He stated the #1 most important thing for us to do is keep moving. The body needs energy spent to regenerate itself. Well that is fine and dandy Dr. Oz, but you try moving a body throbbing in pain and wracked by fatigue, magnets sucking you to the ground, the sheer act of walking across the living room a tremendous feat. It is quite simply harder than hard!

Doctors are so much nicer to folks they can fix. They can't fix us yet, so it becomes our responsibility to manage it. I personally believe what we are dealing with here is an environmental illness of epic proportion. It is a reaction to the unhealthy world we live in. Stress, chemicals, pollutants, processed and manufactured food, big business, damaged DNA, divorces, illnesses, accidents, corporate responsibilities, injuries, latchkey kids...oh the list goes on and on. Did I mention stress? All that we have gained from our agricultural and industrial and counter-cultural and technological revolutions. Compile all this together and figure the majority of us have been active participants in this world, completely oblivious to what we were morphing into biologically. Trading convenience for wisdom, now for later. Fibromyalgia is hitting the world in epic numbers. There is no race or socioeconomic status or religion or political party or specific culture predisposed towards this illness. There is no answer to "Why me?". I am sure Fibro itself has been around for hundreds of years, at least. But over the last few decades the numbers have skyrocketed! For whatever reason, at this point in the perfect storm of modern society, so many are receiving this diagnosis. The central nervous system of millions of people becomes stamped with catastrophe, causing damage, permanently and forever altered. Leaving the body that holds that damaged CNS with awful pain and debilitating fatigue, often accompanied by horrible insomnia. So take heart, my friends. There is another side to Fibromyalgia. One where you can exercise and live your life again. When I was at my lowest low doctor after doctor kept telling me to exercise, and I thought they were out of their minds. And to a degree, they were. But once I got treatment for my CFS, slept for like 5 years, changed my diet, stress levels, lifestyle and most important of all, my attitude, my life improved drastically. See folks if you believe it, it can be done.

Thanks for joining,

Thursday, July 14, 2011

Its Off To Work We Go

You may not know it yet, but you have a very important job to do. Now you may already have a job outside the home, but this one you will have to do on top of that one. If you are a stay-at-home parent, you still have work to do. If you are disabled and unable to work, you still have to get up in the morning and do this job. If your spouse makes enough money to support you, yup, you got still have to go to work each day. In fact every morning of every day of your life, the second your eyes pop open, this job is your first priority. Oh, and it is not glamorous work. Its a hard job, in fact. Possibly the hardest one you will ever have. It comes with no training manual or DVD. It comes with hardly any physical or emotional or financial or medical support. Yes, I am not gonna lie, you are pretty much expected to pull out all the information you need to do this job from your ass, or the internet, whichever is easier for you. 

This is work you never get to punch out from, you never get a lunch break at. You are always on the clock. You don't get to take a weekend or holiday off. In fact for all this work you don't even get a paycheck! Your family does not like this job, for it absorbs so much of your life. Your friends hate this job. It has taken you away from them. Your kids don't understand your work, or why you are so different than you used to be. Often times your doctor does not even believe you enough to tell you there is a job to be done! And that it must be done by you. But despite all these drawbacks it is perhaps the most important work you have in your life. For if you don't do this job you will not be able to have a life, or do any of the others required of you. The ones you want to do. Now some try to ignore this job they have been given that they never asked for and certainly never wanted. But the necessity does not go away. Those that ignore it the most are often the ones it hits the hardest. 

So what is this extremely undesirable job you have NOT signed up for, but is required if you are to survive? It is managing your chronic illness. When one is unfortunate enough to be ill there are 2 types of diagnosis, terminal and not-terminal. I will add a 3rd on, actually. Not immediately terminal. Types 2 & 3 are what require you to do this job. And if you look at the alternative, it really is the better choice. Not like anyone had any in the matter. But you will still be traipsing around on this planet for a long time despite this chronic illness, and managing it and getting it under your control is the only way to live a life. When a person is diagnosed with the type 1 diagnosis they will most hopefully be in a position put up a big strong fight and use anything and everything at their disposal to win, stamp it out, erase it. Some are successful and sadly some are not. But why would it be any different for types 2 & 3? Why because we are given these diagnosis do we think we don't have to fight too? And use everything and anything at our disposal to gain the upper hand? Is this something in life you just lay down and take? Would you if it were a terminal diagnosis? As a doctor once told me, "You can get to livin', or you can get to dyin', but you can't do both."

Thanks for joining,

Tuesday, July 12, 2011

How Life Unfolds

I am disgusted with the kind of housewife I have become. Nothing is ever clean. Something is always in a varying state of disarray. Bags of stuff, oh so much stuff. Other peoples stuff, and my ambitious dreams I thought I could tackle, but can't, piled high in the corner of the room. If the counter tops are clean, the floor is dirty and if the sheets are freshly dressed, the bathroom towels need changing. There is no oh-so-fresh feeling as I walk from room to room, fluffy just-vacuumed carpet pillowing every step. Each room dusted and shined and polished and fussed over down to the finest detail. Clutter concealed and exact-trinket-placement revealed. Oh I remember those days so fondly. When I could clean the bathtub AND toilet in the same day! And then mop the floors and polish the mirror and counter top and spit-shine the sink. Next move onto the bedroom, living, dining and kitchen, throwing the furniture polish, bucket and Lysol under the kitchen sink with an aplomb reserved for a well-finished task. And then leaving to enjoy the rest of my day. The simple act of even writing that has made me tired! Oh boundless and youthful energy, I miss you! I did not know how precious you were when I had you, and all I can do is look back and know I used you and abused you to my heart's content!

Is this good or bad? I can certainly say I lived, but was the kind of living I was doing worth it? What would I have done differently if I had known sickness was going to swallow me at 28? Its interesting how the life you envision for yourself as a child morphs so grotesquely around what actually happens. My plans went one way when I graduated from high school. But my anticipations were elsewhere. I dreamed of Louisiana, the romantic and mystical southern United States. The bayou, French Quarter, Burbon Street, vampires! All the mythical legends I had grown up on. I was even accepted to the University of New Orleans. Regretfully I lacked the guts to transplant myself 2,000 miles away from all that I had ever known. I stayed in my home state, satiating my quest for travel and adventure with the promise of a semester abroad in Europe. That never happened, though. I moved away to college, met a great guy, got into debt, drank a lot of beer and fell in love, in that order. I graduated and we spent the first 5 years of our marriage with my husband working his way towards his bachelors degree (see during his college years he just did the beer part, not the college). And then the next 5 years I have been ill. How many times can I look back at the "turning points" in life? Those pivotal moments you recall and see the fork in the road with amazing clarity. A fork that was obscured from view when the choices actually had to be made.

What I got is nowhere near what I thought it would be. That is what happens when you live life, I suppose. I always pictured children and a career and a white picket fence for my future, certain I was going to take the path most traveled, of least resistance. But somewhere along the way I stepped off and started forging my own. And then this illness hit and forced me into a terrible offshoot all alone on this long and windy trail of Fibromyalgia. So believe it or not, each floor I mop shiny, each buffet I buff clean, is one step closer to normalcy. A hacksaw through the brush to find the path of my existence. What I had decided my life was to be about, not Fibromyalgia's dictating claws directing me. And lets face it, if I have not come to terms with a messy house at this point on that long and windy trail, then I really have learned nothing at all.

Thanks for joining.

Monday, July 11, 2011

How Bad Do You Want It

I live in Arizona and my home was included in the dust storm last week. This left my patio looking terrible. Everything was powdered in this super-fine gray dust. It was messy and abundant. So last night I decided to re-arrange the patio and sweep it all up. My dear husband was cooking dinner and I kept calling him to come out and pile the leaves and dead bloom out of the dark corners, convinced it was going to stir a pissed-off scorpion or horribly big and poisonous spider. After an excessive amount of sweat and dirt the patio was shining and plants were in full bloom, all remnants of dead leaves and dust storms removed. I wake up this morning and as I am putting on my running shoes I spot a grasshopper(?) just kickin' it on the end table in my living room. And I am genuinely and pathetically really freaked out. I take my Spanish textbook and throw it on him twice. I miss. It is still alive and seems to be between the sofa and table now, still alive. I leave on my run with Yorkie & Porkie, hoping I can find it when I get back. 

We come home and he is back to sitting on top of the end table, chillin' in the thrown shade of the failed Spanish book. I stand and stare at Mr. Grasshopper(?) for a while, considering my options. I could not just leave him there, able to run all over and even get ON ME! Besides it was big and I was only really guessing it is a grasshopper. It could be a flying roach or miniature bat for all I know. Heaven knows I had never seen a living dinosaur before my encounter with the Javelina's! So I decide I don't actually have to kill it. I can just contain it. I stand near it with an empty plastic container for a while and in a sudden rush of bravery, brought on by convincing myself I could shoot an intruder if in mortal danger, I slam the plastic jar over the grasshopper(?). Phew, he is contained! The book goes on top of the plastic container and there he will sit until my husband comes home from work. I do frequently peak in as to his whereabouts whenever I pass by, though.

Now however lame or stupid an analogies this is, it gave me a thought. HOW BAD DO YOU WANT IT? How badly do you want to reclaim your life? How much maneuvering and trying and succeeding and failing are you willing to do? How much will you fight, if pushed to the bottom? How much will you challenge, if you find your way to the top? Fibromyalgia is a horrible illness. I was disabled  and broken and had absolutely no view of the horizon, the end of the abyss. I cried and screamed, throbbed in pain and zoned on the television for years, barely able to keep a storyline straight in my head. I found the start of my journey and tripped and fell as I struggled a million times just to stand up and take one step on that road. And my life is a million times better now. Hardest thing I ever did. I found strength I never even dreamed I had. So yes this morning as I explained my exploits with the grasshopper(?) on the phone to my husband he roared with laughter. What was so funny? "Honey, you can beat a debilitating disease, but you can't kill a grasshopper?" he struggled out through choked laughter. Touche my friends. Touche. 

Friday, July 8, 2011

The Student Becomes The Teacher

I never wanted a career in cosmetics. In fact I think I had a bad attitude most of the time I had one. I had gotten so miserable that one day I decided I either needed to look for a new job or change my attitude. Since I am loyal to a fault if it is convenient for me, I knew the attitude had to change. I stopped paying attention to the aggravating aspects of retail management and focused all my attention on what I enjoyed. Makeup artistry, face time with my clients. Growing and developing my staff. And of course once I turned positive things got a whole lot easier. I was doing so well I was offered a promotion. I did not want it, though. My boss pushed me into it. See he needed someone to oversee his stores while he exercised (or exorcised) his corporate responsibilities. I was the most capable and successful manager he had to pull from. He was a good salesman. And somehow he made the deal happen and I entered the "executive" realm. It was much better than being on the front lines; engaging with that customer, tallying each sale, remembering to call the people on your list that should be due for a new moisturizer soon. No, now I collected daily sales tallies from 8 stores and expensed things and had a mess of untrained counter managers struggling to run a business with no support. So I would go and visit these stores and try and impart my wisdom to this sparse and constantly turning collection of employees. And out of the 8 managers I supervised there were 2 that took what I gave them and used it.

The first was a girl who wanted my job. The job I did not want and my boss pushed me into. She was so pissed off she had been passed over for this promotion, and I had been well prepared for her  potential retaliation before my first visit. But I walked into that store that day and this girl was a complete sweetheart! And was naturally my strongest competitor. So after my first day of team-selling at that counter yielded their best sales day ever she set out to beat me. That worked out great for me! She took an awesome and creative interest in running her business and raised sales like you would not believe, which only reflected positively on yours truly. The other was a girl I struggled with. So young, too young to be a "manager" in my opinion. But I saw this girl a lot more often. And slowly but surely the leader in her emerged. And the business woman began to build herself. And yes I am unbelievably proud to say the last month or so I lived in San Francisco she had been promoted to my old executive position, so technically was my boss! I was so proud of her. I beamed from ear to ear and felt like I had graduated a daughter from college.

And I have seen it here. I have seen a select few take the tools and tricks and wisdom I am constantly blathering on and on about and do something about it. One has tested positive for the same viral infection that was responsible for my CFS (not all cases have the same root cause). And she is on the same anti-viral drug that gave me back my energy. It is brutal treatment but she is fighting, oh how she is fighting! And I have seen a whole host of others stand up and change doctors or stop hanging out with harassing family members or get themselves back in school so they can do a job that is not as physical. I have seen it and it does my heart good. And I want to do more, oh so much more! And I will get there. I will get there putting myself, my health, first. And pursuing my awareness efforts to the best of my ability. So while The Fibromyalgia Crusade may be progressing really slow, it is only gaining momentum. Its just running at a Fibro's pace.

Thanks for joining,

Thursday, July 7, 2011

The Living And Breathing Entity Of Marriage

This last weekend was especially rough for me. 3 full days of my husband home always wanting to do stuff. So much stuff, all the time. When we wake up in the morning its a quick dash to the dog park before the blazing Arizona sun rises high and hot in the bright blue sky. A snappy detour to the coffee shop and home for breakfast. Then pick the day and I will tell you the activity. Pool time, Costco, the mall, the gym...oh the list goes on and on. We are always rushing somewhere. And it is with great intensity and urgency my husband lives his life. This is the man who works 14 hours a day, then leaves work to work-out. I have a really hard time understanding how he does not want to crash or decompress after his intense and grueling work week, but he feels the weekends are the only time he has to live his life and wants to pack as much as humanly possible into each and every second.

You can imagine it does not take much time for him to quickly outrun me. My knee-jerk reaction is to either crumble into a blithering mess, still so frustrated and angry I am not the healthy girl with equal energy I once was, or get pissed off and irritated at him for being so hyper and demanding as I struggle to make him understand something he has already understood for years. And that train that is never late! The guilt train. The whole I have ruined his life song and dance. So Tuesday evening rolls around and I have myself pretty worked up. He comes home to a terse wife all uptight and bent out of shape, spewing anger and blame, but only about ¼ of that directed his way. Oh the frustrations! My life, where has it gone? The days of level 8 pain all day every day are long behind me. Being unable to leave my house for more than 30 minutes at a time is years in the past. So what on earth am I still bitching about?

And much to my surprise he told me he was having a lot of the same feelings I was! He was glad I had brought this up because he had felt the tension, the un-meshing of two lives that are deeply intertwined. And it was bothering him too. So we talked, breaking the silence of unsaid frustrations and desires. And we admitted we needed some work. Yes he did, and yes I did, but more importantly, the marriage did. The living and breathing entity marriage becomes, standing independent all on her own. She was the one that needed the attention right now. He agreed to step back and allow me some "me" time on the weekends and I got him to promise he will not hold his life back because I cannot always join him. We worked through our discord. Gave our union a little oil change and set back on the gameboard of life. And when he came home from work yesterday we had a wonderful evening together. Laughing and being silly in a way I had been too uptight to relax into. Chilling out and mellow in a way he had been too rushed to realize the necessity of. It was good.

Thanks for joining,

Tuesday, July 5, 2011

235th Birthday

This was an insanely busy 3-day weekend. They tend to go that way when I am frequently spazzing out over one stupid thing or another. Monday night arrived far too quickly and was settling onto my chest heavy and full of the "have to's" of responsibility. I have to make my husband's lunch for work tomorrow. I have to do the dishes. I have to go to bed early so I can beat the heat for my morning exercise. Basically, I have to practice a modicum of self discipline in this never-ending quest to get my life back on track. And not indulge the path of least resistance my sore and aching body wants so badly to sink into. So we are getting ready for bed last night when we hear the loud !!BOOM!! of the first Independence Day fireworks. The dogs took off like a shot, barking and pouncing with all their might. I step outside onto the patio to see if there is any chance of a show far off the distance to take a quick peak at before we go to bed at (gulp and gasp) 8:30pm. SURPRISE! There is a magnificent show bursting forth right before my eyes! I holler at my husband to come join me and he toggles between in and out, trying to watch the show and soothe Porkie, who is totally freaking out. He finally gives up and goes in and I proceed to peacefully watch a beautiful fireworks display by myself on the close of this 235th birthday of the the U.S. of A.

And as my eyes are dazzled my mind wonders into the vacancy of my memories. I conjure up all sorts of ghosts from many of my 4th of July's past. I remember as a little girl we would buy the coolest box of firecrackers and my dad would set them off and all the girls would dance around the street like ballerinas with our sparkling sparklers clenched in each fist while the boys set off spinning wheels of fire whipping unpredictably across the ground. I recall the summer after high school, spending the night sleeping on a kayak parked on the sand of Mission Beach in San Diego. The evening spent traipsing the town with our underage liquor bottles wrapped in brown paper bags, fooling no one. I thought of all the years I spent in my home town, my parents somehow finagling a parking spot close enough so we were nestled in the cool grass on a rolling hill, watching the light display high above our heads as fireman dotted the perimeter, extinguishers at the ready. I fondly smiled when I thought of San Francisco. Foggy San Francisco. How many shows did we watch while the clouds and fog turned red, and then blue, and then green? Morphing into a blurred mess they would finally give up on it. But the years the weather did arrive clear and bright, oh those were priceless! We would climb up on the roof of our apartment building and lie flat on our backs as massive bursts of light and color fell in the sky right on top of us, the instinct to flinch gradually and unnaturally relaxing. We viewed the twin show taking place across the scenic San Francisco bay. And eventually we would make our way to the bar downstairs. There was always a party, and one year my husband and I were having so much fun with these Scottish tourists we met, we decided we were going to leave with them on Thursday to go back to Scotland! We ran around the bar all night telling anyone and everyone who would listen that we were going to Scotland on Thursday. And when we woke up the next morning with their phone numbers programed into our cells and flight information for Thursday to Glasgow pulled up on the computer screen we laughed. Yeah, work was real fun that day.

And then I thought of last year. And how by the months end I had evaded death with two strokes behind me and a whole other illness on top of all the others to throw into the mix. And I think of the girl I was one year ago, the girl with no future knowledge this was going to happen. Still with a spec of innocence left. Still believing life would get better, eventually. Feeling I had been kicked down as low as I could go, and the rebuilding phase was finally in place. And as I watched the beautiful display of popping lights and sparkling ribbons sailing through the air, solitary, with only my thoughts and myself, big fat tears started to roll down my cheeks. I was overcome with emotion. Good and bad. Grateful to be alive but angry I was even in a position to be grateful for something so taken for granted. Proud of the progress I have made in restoring wellness to my life. Yet bitter about the backlash the treatment for the strokes has left me with, and how much hard work it is to get it back. Ditsier, heavier, forced to quit my job, a few more crinkles and wrinkles. But the growth in my body and soul! In my heart and bones, that has been my golden goose egg in all this madness. For it finally forced me to set down my makeup brush and pick up my pen and start writing. Something I had spent my lifetime ignoring that brought me great joy. And this writing has brought together a whole bunch of people, and given me purpose and passion in my life. And as 25 bright simultaneous bursts of light lit the sky and marked the show finale I dried my cheeks and went inside. I felt cleansed, and absolutely certain I had made the most of my life so far. I had lived. So as the country celebrated its 235th birthday I sit in anticipation of the 35th of my own. For if anything has come of this I have earned every candle on my cake, every single one.

Thanks for joining,

Friday, July 1, 2011

Do I Fall Or Do I Stand Tall

I have been fearful lately. I have not been dwelling in possibility, but reacting to the present. And last night I burst into tears because I have been mentally re-creating my past, when I lived. When I was a real person with a job and friends and a life. For some reason the acute sharpness of what it felt like to be that girl smacked me across the face yesterday and made me so sad. I lamented this career that I never wanted, the last job I held that left me in constant fight-or-flight for a year and probably precipitated this bloody Fibromyalgia, was in fact my glory days. I cried to my husband that I wanted to move back to a city where people live on top of each other and were smushed into public spaces and the seekers reside. Those not content to duplicate the experience of their childhood, but search and look for a place to be themselves, no matter how extreme or odd or foreign or normal they appear. A place where I shared friendship and plans and a destination. These wide open spaces and sweeping flower studded suburban avenues I have now, its too much space for me! Too much vast room to live and explore and get lost in myself. I need to be smack-up beside society, people, the world!

Oh surely this is when faith is the hardest. Not in the beginning, when things are exciting and new, possibility  is endless. Or when that amazing opportunity has come to roost and success is pounding on my door. But it is in the middle. When that long and lonely road in-between is walked. Steady and slow, faithfully plodded. No immediate savior in front of me, but beyond that next bend in the road, certainly. I hope. And still I walk, sightless. Knowing and believing that the desires God has placed in my heart are the purpose of my existence. And walking that path with blind faith in the future while the present is sucking into a vacuum, that is when distraction taunts my vision. That is when I stumble and fall. And get all scared and worried and doubtful and negative. That is when I start turning my life upside down to try and shake out the piece that just does not fit, chronic illness. I start ripping at the fabric and tearing at the seams and trying to fashion it into a new body, new mind, whatever I need to take this away! WHAT AM I DOING TO BE SO SICK AND HOW DO I STOP IT?

Research is showing that whatever combination of trauma, genetics and infection has caused Fibromyalgia, its imprint on our brain is permanent. Our central nervous system is forever altered, morphed from normal to damaged, and not going back to factory recommended settings anytime soon. So we, as a patient body, have to learn how to do better! We have to learn how to live with this. How to manage it and re-define our life so it fits in. Not succumb to it, but master it. I have to stay on this path. The good fight, tunnel vision to the finish line nowhere near my horizon. And I will be one who walks in possibility, in the dawning of a new day. I put my guts and glory into every march for survival and revel in the win at the end of every battle. Victorious. For I believe they will one day figure out how to heal us, return those factory recommended settings to normal. But until that happens I am not throwing my life to the dogs, either.

Thanks for joining,

Happy 4th of July, the good 'ol US of A!  A new blog will publish on Tuesday, July 5, 2011.