A United Front

Last year I had to get a root canal. It was a maiden voyage and I was extremely paranoid about the rumors of pain it would cause. My endodontist was amazing and numbed me up to the point that I felt nothing, God bless him! His assistant, on the other hand, was something else. When I told her why I was so worried about the pain, because I have Fibromyalgia, she looked her snooty little nose down at me tipped back in the doctors chair and told me she had Fibromyalgia as well. I asked her how she managed it. She pompously informed me she worked out every day and just powered through the pain. My thought, You must not have the same kind of Fibromyalgia I have! Luckily at this point my mouth was hinged open in prep for the root canal so all I could do was glare at her.

There are as many variables with this illness as there are theories on what causes it. Nutritional deficiencies, neurological damage, cranial injury, depression, viruses, TMJ, sleep disorders, genetics, trauma, elevated neurotransmitter activity, central nervous system pain amplification, hormonal imbalance, depressed serotonin and/or growth hormone...oh the list goes on and on. Some folks have this symptom, some have that symptom. Some have found ways to get it managed or even heal while others have not. In some people it's so severe they can barely walk and live on narcotics while others go to step class at the gym and work two jobs. And then there are so many other conditions many Fibromyalgia patients suffer from as well, each encompassing their own complexities of cross-over symptoms. I am coming to realize the pure range of this illness is one of the main reasons we are so misunderstood. Not only can modern medicine not just poke your blood out of your vein with a needle or scan your brain with some hi-tech image slicer to tell you what is wrong with you, but we all experience Fibromyalgia with different symptoms and varying severity and it has compounded a mass confusion. We the patients cannot even understand or agree on what it is!

Whatever its cause the bottom line is the jury is still out, the clinical basis still in the research and development arena, and while there is a real push for awareness and treatment no one protocol works for every patient. This is the crux of our problem. I wonder if we the patients accepted Fibromyalgia as a cluster of varying illnesses sharing similar symptoms and showed a bit of compassion and understanding to our fellow patients, maybe that acceptance and support would go a long way in showing the world at large what we are going through is indeed real. Let's be honest here, half of what makes this so hard to live with is the way we are treated, and not just by uncompassionate family members and friends or archaic doctors. The way we relate to each other has a huge impact as well. I see a fair amount of judgment in our fraternity towards our own members. Some have found the holy grail that works for them (or what they are trying to sell) and set out to convince the world that if every Fibromyalgia patient just took this supplement or did that exercise or got this treatment then poof, it would be gone. Some are genuine in wanting to share their success. But I know personally when I was in the depths of despair over my quickly disintegrating physical and mental capabilities the last thing I had the patience to listen to was one more anecdotal tale about how if I would just buy some special vitamin or juice or potion I would be cured. Quite frankly, it only served to piss me off. I was one sick girl and vitamins alone were not going to provide a magical remedy to solve my myriad of problems. Like politics or religion, this is not a one size fits all disease.

The reality of Fibromyalgia is the tremendous amount of variable symptoms and degrees of incapacitation are serving to sever us as a community, a community that must stand with solidarity and one voice if we ever expect validation. I believe I know what my particular Fibromyalgia was caused by and have figured out a way to manage it to the best of my ability. But that in no way means every Fibromyalgia patient has it for the same reason, can manage it the same way or will experience relief from the same treatment. The sooner we get on the same page, hell, even just start reading the same book, I believe our cause will come together under the umbrella of compassion and grace and truly further awareness for real. Can we stand together, accept that Fibromyalgia is a diverse illness and support our fellow-sufferers with compassion, acceptance and understanding, not harsh judgment or dogmatic close-mindedness? Is it possible to recognize my Fibromyalgia is not the same as your Fibromyalgia which is not the same as their Fibromyalgia, but we all have Fibromyalgia? Would it bring awareness to a whole new level by accepting each other first, and then seeking acceptance from the world at large? I think it would.

Thanks for joining,

Leah

This blog was originally published on 9/14/10. I have met many people since writing this, and learned many things about Fibro, and am sad to say the mystery and judgment surrounding this illness still stands. We are making steps, my friends, but they are hard-fought and very slow.

The Teen Mom

I have met many people since starting this blog and The Fibromyalgia Crusade. Some have allowed me to interview them and agreed to share their stories. This is one of them...

“I got knocked up in high school,” the pretty young brunette explains to me as she jiggles a happy toddler on her hip.

We are in the kitchen of Shannon’s* small two bedroom apartment. She is standing and I am sitting at her cluttered dinette table. The apartment is clean but dingy, her furniture functional but well worn. Although only ten o’clock in the morning it is already over 80 humid degrees out. A creaky fan pushes hot air around. Summers are stifling hot where she lives but she doesn’t have central air conditioning, just a small wall unit stuck in a window in the living room. The cold air wafting out does little to combat the heat or reach the other rooms. A trail of sweat trickles from my brow.

“Graduated when I was seventeen years-old and seven months pregnant. We got married a month later, the day after I turned eighteen. That was fun,” she says sarcastically. “I had twins. Do you have any idea what having twins at eighteen is like? Twin boys?” she puffs in frustration.

The boys race past shouting pow pow with fake laser light guns clicking as they shoot each other but don’t die. Shannon hollers at them to stop or else. They keep on, impervious to her warning.

“Darren* went to work and I learned how to be a housewife. He does construction. His daddy does construction. Well that lasted a couple of years. Then he split. Left me for another girl who had no kids.” Her tongue tisks at the irony. “Deadbeat defined,” she sums up with a sick smile.

Shannon interrupts herself to yell at the boys. They are sliding around in cowboy pajamas ignoring her. The little girl on her side grabs fistfuls of her long hair, causing the young mother to wince and struggle to untangle the baby’s plump sticky fingers before her other hand snakes around and pulls more.

“So I divorced him, sued for child support and he quits his job. Asshole. I am sure he is working under the table somewhere. Mind you I am barely 20 years-old. I had no idea what the hell I was doing. I took the twins and moved back into my parents house. My dad would hardly look at me, he told me Darren was going to leave me when I got pregnant and that I should have an abortion. Fuck him.” Shannon’s eyes flash anger.

The two boys start chanting fuck him, fuck him in unison as they run around the room laughing wildly. For some reason my mind conjures images of the final scenes of Lord Of The Flies. Shannon sets the little girl in her arms down on the floor and cringes as she stands back up. I play a few rounds of peek-a-boo and the baby laughs. Shannon goes over to the boys who race away from her, faking her out as she tries to use her body to block them. Finally she stops chasing and starts crying and screaming. The baby starts crying. The boys look alarmed and come to her warily. She smacks them both on the behind and says next time it’s a mouthwash with soap.

“She is so sweet. I love my little angel,” Shannon tells me as she comes back into the kitchen and grabs a box of Froot Loops from the cupboard, pouring some into a sandwich baggie. “Sorry,” she smiles apologetically at me.

I reassure her it is no problem. She hands the baggie of multicolored cereal to the little girl and takes her into the living room. The boys are sitting in front of the TV watching cartoons. The baby lurches around the perimeter of the room towards her brothers, gripping the furniture as she learns how to walk.

“Anyway, I get a job. At a really nice restaurant, actually,” she says returning to the kitchen. She refills our perspiring glasses with sun tea from a glass jar in the refrigerator. “As a hostess. Got promoted to a waitress pretty quick and made $40 grand last year. The tips are amazing. Not bad for a teen mom, eh?”

In the living room the baby drops the bag of precious sugar circles and starts fussing. One of the boys goes over and picks it up, holding his sister’s hand as he leads the little girl to join them in front of the TV.

“So I moved out and got my own place. This place. My mom still watches the kids at night when I work. She has to do it here, though. My dad is still pissed at me. Well I met Hailey’s* dad at the restaurant. He is one of the sous-chefs. We live together but are not married.”

Shannon opens up the window in the kitchen and lights a cigarette, fanning the smoke out the screen as she sits on the window sill. In the living room the little girl feeds her brother Froot Loops one at a time, squealing with delight as they disappear into his mouth. He sticks out his color stained tongue to show her it’s gone and she feeds him another.

“I am not getting married again. I am too young. I don’t know what I want. I got pregnant with him pretty quick too. It was a hard pregnancy and terrible delivery." Shannon shakes her head at the memory. "But ever since I had Hailey I have been in pain, and it just keeps getting worse.  I am tired all the time. It hurts to pick her up, set her down, do anything with her. Just looking at the boys hurts me. I lose my temper all the time.” Shannon shakes her head back and forth as she explains her predicament.

As she slowly exhales smoke through the screen I see how truly young this brave woman is, facing momentous challenges head on and all on her own to boot. There is a vulnerability in her sagging shoulders I want to rescue her from.

“I went to the doctor and they took a lot of blood, but apparently there was nothing wrong with my blood. They pushed on my body in all these places that hurt like the dickens and told me I had Fibromyalgia. But didn’t really say much more than that. Gave me Adderall and Amitriptyline. But that shit knocks me out so I can’t take it. I mean I have three little kids in the house! And the Adderall is like speed. So I don’t sleep, I cry so easily! My job is killing me. My kids are consuming me. And I am barely 24 years-old!” Tears well up and spill from her large kohl rimmed eyes. She puffs on the cigarette and collects her thoughts.

I want so badly to offer her a remedy, a quick fix, a return ticket to normal. Sadly they just don’t exist in this situation. What can I say to this girl? What advice can I give her? Anything I have to offer seems trite and uninspired.  

“I don’t know what I am going to do. The doctor will not give me any pain medication because I am too young to need them. He actually said that to me, can you believe it? My insurance is HMO so you can’t just go to any old doctor you feel like going to. Referrals and all that. I am starting to miss work because I just can’t do it! What am I going to do? I can’t move back in with my parents, you should have seen my dad when I got pregnant with Hailey." She rolled her eyes for emphasis. "Oh shit on a stick was he pissed! I still don’t get child support from Darren. I can do this, though, afford it all on my own, but not being sick. Not in this much pain. I won’t keep my job if I keep missing work. They are really strict about that. Hailey’s dad helps out but not much. Besides the twins aren’t his. He never lets me forget that.”

She holds her head in her hands, rocking it back and forth gently. Shannon is overcome with the sheer burden of responsibility she carries. She is young and capable, but the independent and energetic parts of her are eroding away quickly. Bewildered, angry and confused she looks up, black mascara trails down her cheeks.

“How on earth am I going to support my kids? Nobody else wants to do it but me. But some days I can’t get out of bed. I mean I do, I have to, but it’s like living in quick sand. I don’t know how much longer I can go on if its gonna be like this?”

As I make my way home my heart is heavy with Shannon’s burden. She is a good person trying to do the right thing, and getting no breaks. I was not as young as she is when I got sick. I already went to college and was married and don’t have kids to take care of. And my journey was living hell. I can only imagine what being a single mom adds to the plate. Sadly I don’t know how it is going to work out for my new friend. Her journey with chronic illness is just beginning. She has very little support. I know from personal experience the harder I pushed to normal the worse Fibromyalgia got. All I can do is hope and pray she is able to find her way.

Thanks for joining,

Leah

*All character names are fictional to protect the anonymity of the contributor.

It's An App World

Me and my new best friend Droid are getting along amazingly well. I like this one much better than it's older sibling I'd been saddled with the last few years. Yesterday I realized, about a decade after most people, this phone can do pretty much anything I want it to. I didn't like the calendar/appointment book already installed so I went app shopping to find one with Leah-friendly interface. Which pretty much means extremely simple and not controlling. Well that was harder to find than I thought. They all do these spiffy things I just don't want them to do, like log onto conference calls and import appointments into that magic database in the sky so everyone can have access to it. Then it links up with Facebook and really, who needs to actually think ever again? 

While I was trolling for free apps I came across some very interesting options indeed. There were female monthly cycle trackers and medication reminders and even a Zippo flame so I can hold my phone up at a concert instead of a lighter and wave it back and forth. Since I go to so many concerts. There was even a mirror to look at yourself, using the camera to somehow project your face back at you. But by far the most shocking, and there were quite a few of them I might add, app I found turns the phone into something "electric" one might get at an "adult novelty shop." Honestly I laughed so hard I think I got the equivalent of 100 crunches in with my stomach muscles contracting. What ever will they think of next?

Eventually I found the calendar I was looking for. I also found an app to record my medical information, quite helpful if someone finds me and my phone together but I can't talk. I plugged in my medications and dosage, emergency contact, pharmacy, doctors and plethora of diagnoses. I feel safer already. I was quite pleased to see pain trackers, too. Exploring this latest discovery I realized there is so much these nifty little devices can do for us chronic pain patients. Keeping track of pain severity and duration, sleep, activity and stress can really help pinpoint triggers or things in our control which exacerbate flares. All that information is quite helpful in communicating with your doctor, too, and these apps make it all the easier. They even make charts and graphs! So as much as the 21st century dragged me into it by my hair kicking and screaming I am finally able to say, twelve years in, maybe this technology thing ain't all that bad after all.

Thanks for joining,

Leah 

How Do I Explain Fibromyalgia?

I attended the birthday party of a good friend last night, just an intimate and impromptu get together at her house. I found myself given the opportunity, for the first time since taking up the proverbial Fibromyalgia cross, to explain my condition and raise awareness. But I was at a loss as to what to say without launching into 20 minutes of background information to answer each question. It is a messy and complicated illness with so many variables between every patient, each with an individual and woeful tale to tell. It became abundantly clear as I was losing my momentum and focus that I must devise a "30-Second Elevator Ride" synopsis that clearly defines, explains and promotes the cause. So today while football pulsed from the TV and my husband hollered so loud Yorkie & Porkie ducked for cover under the bed, I researched. I need the best, most effective, clear and concise synopsis of Fibromyalgia to get the word out and leave each person I encounter with a basic and clear understanding of what Fibromyalgia is. Not Fibromyalgia as Lyrica or Cymbalta advertise, not to diss the attention their advertising brings. But really, WHAT IS FIBROMYALGIA?

Fibromyalgia is a neurological disorder resulting from excessive pain stamped permanently onto the central nervous system. It heightens the sensory perception of pain through a disruption of neurotransmitters, blood flow to the brain and impaired communication between the brain and spinal cord. The pain can be so bad it is disabling and there are lots of other symptoms too. Basically it feels like the worst flu you have ever had in your life, pretty much all the time. Genetics make a person susceptible to Fibro but alone don't cause it. There is no cure and medications offer limited relief with a high-incident of side-effects.

And that is my layman's definition of Fibromyalgia. Now I just have to commit this to memory (did I mention Fibro-fog?) and pull it out any chance I get. I believe if I keep the focus off my specific experience and make it more about a general condition many suffer from it will go a long way in promoting the "realness" of this spectacularly awful predicament we find ourselves in.

Thanks for joining,

Leah

This blog was originally published on 9/12/10. When I wrote this it made me realize I didn't really even know how to define it myself. Two years later I can now tell you pretty much anything about Fibromyalgia inside out, upside down and backwards in Latin. Knowledge is power!

How I Taught Myself To Run

I was the kind of girl who walked the mile in high school physical education class. A little clump of us non-athletic types would cluster together and gossip as we walked the track around the football field four times. Each time we would pass by the teacher she would scowl and yell out our outrageously excessive time from her stopwatch as she made little witch marks in her demerit book. So needless to say exercise and I didn't get off to a roaring start, until I was in my mid-twenties. There were a few spirts here and there, usually when my social life was totally lagging, where I would get into the gym. But it took that pancreas attack that almost killed me in 2004 for it to become lifestyle. 

And when I finally got on board I was relentless. I started eating good and going to weight training, yoga and pilates classes at the gym. This was no part time affair. It became such a placeholder in my routine my instructor would ask me why I missed if I had to switch my schedule around at work or wasn't feeling well and skipped class. Boy did it show. I got into a size eight for the first time since my wedding and felt pretty darn good about myself. Then I had to do a little tango with that thing called Chronic Fatigue Syndrome and Fibromyalgia. As simply moving became increasingly more difficult exercise was quickly thrown to the wayside. I could hardly lift a gallon of milk, let alone my own body weight. Then came the barrage of medications to treat these ailments and my system became a sickly septic cesspool of chemicals and illness. The pounds packed on.

The rare type of strokes I had in 2010 were treated with eight months on high-dose steroids. Everyone said to watch what I eat, I can gain a lot of weight. Quite frankly I was just thrilled to be alive and high on Prednisone so didn't think twice about it. I was invincible! In retrospect I should have just had fat pumped into me, like a reverse liposuction, it torpedoed on so fast. Then getting off that drug knocked me back to square one with managing Fibro. Sigh. I slowly adjusted and two things happened. My brain in mid-repair from strokes started having rage attacks. Then one day I looked in the mirror and didn't recognizing myself in the girl staring back at me. My face was hidden behind three chins, stomach by a foot of padding and the rest puffy and inflamed. The time had come to do something about both my anger issues and weight.

So I decided to teach myself how to run. Now I have Fibro and am pretty realistic about my limitations. I never set out to be a marathon or sprint runner. Having heard interval running was the quickest way to drop weight I modified it for my level of fitness. I walked 90 steps and shuffle/jogged for five. Around and around the block I went, each week taking a few steps from walking and adding them to running. But oh my God I hurt! Upping my pain meds and suffering, it took me a good two to three months before I could drop them back down again and not spend every minute in agony. I still can't do it more than twice a week, I just hurt too freakin' bad. It seemed to work, though. About six months in I went to the doctor and had lost all the Prednisone weight, upwards of 30 lbs., and I was thrilled! It has been over a year now and I run for three or four blocks and walk for half of one. The rest of it isn't coming off nearly as fast but my inches are shrinking and clothes getting loser, meaning I am converting fat to muscle and that works for me. Somewhere in all this I discovered I now actually hurt worse when I don't run. I can't overdo it, but I also rely on it along with yoga for pain management too. It has taken a lot of time and patience and that unwillingness to give up so necessary to surviving life. But I'm pleased I did something I never thought I could do. I can actually run most of a mile.

Thanks for joining,

Leah

Fibromyalgia Overdiagnosis

Many of the patients I know, myself included, went through living hell to get a diagnosis. First there was the round of new doctors who didn't believe I needed anything more than an antidepressant and a hobby. Then once I found one who didn't think I was a crackpot there was the year or so, while my delicate grasp on life was slipping through my numb and wobbly fingers as I rapidly lost the ability to function, of testing to rule out every other illness that could cause my symptoms. Finally came that cold reluctant diagnosis of exclusion. Which basically meant, "We don't know what is wrong with you, and your symptoms fit the profile, so you have Fibromyalgia. But there is no treatment or cure, and we really don't know much about it, so you girl who is falling head first into the swirling abyss of hades, just go figure out how to live with it." That was 2006.

I am glad things have changed. A year later Lyrica was granted FDA approval for the treatment of Fibromyalgia. The community rejoiced. Finally someone in the modern American medical system acknowledged it was a real illness and offered some relief. But not all patients responded to Lyrica, or the side-effects were worse than the disease itself. Then along came Cymbalta and a few years after that Savella. I have taken two of those and lets just say I ain't no more, and I am not alone in discovering the side-effects were not worth the benefit. It is now five years after the introduction of clinically approved pharmaceuticals to the Fibromyalgia community and the jury is still overwhelmingly out. Some patients get relief, others don't. Ultimately, as much as those medications have helped many patients, they have also compounded the confusion as to what Fibromyalgia actually is. Modern medicine is still unable to offer a standard of care to successfully treat all patients. 

So what happened? The American College of Rheumatology changed their diagnostic criteria. There has never been a blood test or scan to prove Fibromyalgia. Doctors relied on the tender point test, with other symptoms including fatigue and confusion, to conclusively rule some pretty disabling problems as Fibromyalgia. Not anymore. It is purely based on symptoms now. I recognize the need for a, simply put, more humane way to diagnose this illness. I am not the only person who went to hell and back to get an answer as to why I was living in level 10 pain at all times. But I fear things are going in the wrong direction. A controversial illness doctors don't know much about anyway, and startling numbers still dismiss as invalid, the last thing this illness needs is an increase in the "wastebasket" diagnosis reputation we are all working so hard to change. So I sit on the top of the fence not sure which side to jump to. Yes people suffering and in pain need better access to a diagnosis so they can begin to learn how to manage this horrible illness. But a diagnosis of Fibromyalgia cannot become a sloppy way for doctors to skirt their due diligence, either. A place to just shovel patients they don't know what is wrong with or what to do with. So stay tuned friends. If there is one thing life has taught me so far, it is things never stay the same for long.

Thanks for joining,
Leah

A Mother's Wisdom

As I was complaining to my mom about how disappointed I was on Thursday, returning to the land of the living not going off without a hitch, she challenged me to look at the bigger picture and gave me some perspective. Presenting a pulled-together and professional front may be much harder than I thought it would be, this damn Prednisone taking me over half the time and causing me to act like a complete psycho. Yes, I may be saddened that my study of Spanish is flying in a circular pattern, unable to move forward at the pace I was planning pre-strokes. And I am certainly not thrilled with the gut-gain and puffy face the steroids have cursed me with, but greater things are at work in my life and I had lost that sight with the immediacy of my expectations. She reminded me of what has happened, I have propelled myself forward to my greater purpose, and that is huge! I have opened up my experiences in living, surviving and thriving with Fibromyalgia and have reached out to countless individuals at various stages in their personal journey to join together and make a difference. Through this action I have begun to understand what this disease has done to my life, learned how to count my blessings and renewed a commitment to not be derailed, no matter how many wrenches are thrown in my path. I don't have the faintest idea as to how to begin The Fibromyalgia Crusade, but I have faith as I expand my network that too will become clear.

So no, my days are not perfect, things even suck at times. I am frustrated and over medicated and still dealing with the emotional ramifications of two strokes at age 33, but each day I push through the negative emotion and arise to meet the next morning with renewed expectation. I slowly chip away at that dark, foreboding wall that is Fibromyalgia, a wall that at one time enclosed me but now forms a measly quarter circle. The sunlight is flowing in and I can hear the birds chirping and see the beautiful blue sky, all which were impossible before. So much of surviving this illness for me is pure attitude. I can choose to wallow or choose to ride out the mood swings, knowing this too shall pass. And I have to take that ride. I owe it to myself, my husband, family and friends who have offered amazing unconditional support, and I owe it to you my fellow-Fibrates. For to succumb to Fibromyalgia and come out stronger on the other side is not something to be taken lightly. So if it took a near-death experience, set me back with my personal goals, and the treatment absorbs the better part of a year of my life, at least I can say I am trying and have not given up. But more to the point, something so much bigger than just me is going on here, and only when I put my fear away and simply exist in faith can I even begin to skip down that path of purpose.

Thanks for joining,

Leah

This blog was originally published on 9/15/10. In hindsight Prednisone all but erased Fibromyalgia for me. I had energy, passion and was out of pain. Mixed in with a healthy dose of psychosis. Nearly two years later I would still rather deal with Fibro than steroids, even thought I can barely keep my eyes open right now and was laid up for two days this week in pain. Ahhh perspective, blessed perspective.

Through Madness Comes Progress

In my ever increasing efforts to balance the family budget I cancelled Direct TV and signed up for Netflix. This is a big deal, considering we watch a lot of TV. Before I did it I had to verify I could watch General Hospital on my computer, for that is extremely important. I can. Then I had to sell my husband on the idea which I did by reminding him of all the cable TV shows we could rent the DVD's for and catch up on. I was thrilled when I discovered a bunch of yoga videos I could get streaming and went ahead and cancelled the gym membership I feel really guilty about never using, too. Cha-ching, cha-ching, cha-ching! That's the sound of me saving money.

We decided to start Mad Men, a TV show on AMC you can't turn your head around without hearing about. The first two episodes were stunning. Introduced to a world I did not live in, I watched the social mores of the 1960's unfold with my mouth agape. I guess it had been a while since I last saw The Graduate or Bewitched. I forgot how simply different things were before the counter-cultural revolution swept America up in a frenzy of civil rights and equal rights and the voice of the disenfranchised. Women didn't talk back to men (what do you do with them then?) and as the rule, not the exception, didn't work outside the home after they got married. Children were still seen but not heard, big tobacco was fighting the Surgeon General over the preposterous notion cigarettes caused cancer and everything was okay as long as it looked okay. Appearances were very important, and extremely deceiving. 

My first thought was where do sick people fit into this society? As I watched further I realized they didn't. In the world of a thriving middle class that built itself around the infallibility of affluence, social standing and the American Dream, sick was more inconvenient that it is today. For the umpteenth time in my life I thanked God I was born in the time and place of now. But I couldn't help conclude having Fibromyalgia today must be a lot like having, well, anything back then. Nobody wants to hear about it. A person who insists on the reality of their pain or their right to be sick is difficult. Or worse, crazy. While we are not shuffled off to the funny farm to receive shock treatments and lobotomies, we are still not given proper respect because modern medicine remains ignorant to the cause and cure of what ails us. I also realized all that crap changed, freedoms were gained, awareness was raised and options granted because of a big fat fight. Believe it or not I walked away from this show pleased. I know deep in my heart we will get there. We will keep championing for our rights, and hopefully those that love us will too. One day the AMA and SSA will not only believe us, but support us. If public awareness got loud enough to knock big tobacco off their rocker what on earth is going to come for the second most common chronic widespread pain disorder currently diagnosed in the USA? In fact maybe we are already 1/3 of the way there and didn't realize it. I mean hey, the FDA already believes us!

Thanks for joining,

Leah

What I Can Do

I am a warrior. Sitting here typing on my sofa in my pajamas at 12:30 on a Tuesday afternoon I will say it again. I am a warrior. And each person reading this with a chronic or silent illness that gets up each day to fight another fight is too, for this is not easy. It is supposed to be, according to vast numbers of medical professionals and various friends and family members. But it just ain't, and no amount of arguing will convince me otherwise. When I am not bitter and angry, and some ignorant person with no true knowledge of what getting smacked to the ground every few years with a new life-threatening illness is like inserts their criticism on how I handle my toil, I laugh at them. I know full well if they walked a block in my shoes they would crumble and fall before even reaching the intersection. They don't know what I know, though, and this can be infuriating. Because when I am bitter and angry it brings me to my knees.

From the earliest age humans seek acceptance from their peer group. It starts in kindergarten, maybe sooner. No kid in elementary school wants to stand out. They want to be just like their friends, for people accept what they have in common. By the time some venture to junior high standing out may not seem like such a bad thing, having watched all those kids morph into clones of the popular ones in their effort to gain this elusive acceptance. In high school kids splinter off into different groups based on their interests or circumstances. If I recall correctly the only ones who still think everyone wants to be just like them are living out their glory days in homeroom wearing letterman jackets. Hopefully most of the rest have gotten a clue by then. So considering this innate need for approval is it any wonder harsh criticisms are so hard to hear? I want it all back. Health, friends, financial stability, a job, reciprocal relationships where I don't take more than I give. And my innocence too. Believing life is somewhat fair, hard work and perseverance can conquer all of life's ills, feeling like I have something called control over my existence. So when I get a sanctimonious moron telling me how I should behave and respond to my challenges, well my reaction is not usually very pretty. Which has caused me to slash and burn personal and professional relationships with the aplomb of Keyser Soze. With all we face, who on earth has time for that? But I'm not gonna lie, it hurts. Not being understood sucks. Judged by trial and jury in the court of public opinion is painful. Not nearly as painful as Fibromyalgia, though.

Taking responsibility for my illnesses has been hard. I didn't ask for them, don't want them, and certainly am not willing to hand my life over to them. I am responsible, though, for how I survive them. We patients have options. We can be angry and bitter, sure. Quite frankly I think we are entitled to a little bit of that. But hanging onto it for a lifetime, who does that ultimately hurt? We can deny their existence or severity. I tried that one too, a few times, and it only made me much much sicker, so wasn't really that great of an option either. Or we can take a big fat swig out of the bottle of truth, followed by a chaser of gumption, and dig deep inside and find that fight. The strength necessary to get to the other side of so much hurt and pain and anger and frustration. Believe it or not, after enough gulps and swigs, the path out of the mire of this mess appeared in front of me. It was one tiny little brick at first. I was not even sure it was attached to anything else, but I jumped and prayed with all my might. And another brick appeared, so I stepped. A couple crumbled, a few more tumbles, and a much stronger woman than I could have ever hoped to become now sits inside me. Is it easy or obvious how to handle chronic illness? No. Is the path to successfully managing it individual to each person and circumstance? Yes. So go be you, in all your complex and wonderful wonderfulness. Forge your own path, find your own way out of the oppression of living life sick. After a while I realized the only ones with the problem were the people sitting there worried about what I was doing, all the while neglecting their own lives, while I sipped lemon margaritas and danced in the rain.

Thanks for joining,
Leah

I Do It My Way

On Wednesday I had me-self one of them horrible, terrible, no good, very bad days that just happen every so often. We've all had them, nothing catastrophic actually occurs but absolutely nothing goes right either. I dropped my soap in the shower five times. It almost stayed on the bathtub floor with me joining it after the fifth drop made me too dizzy to stand. Then I ripped my shirt while putting it on. I was hoping to have lost weight but now am not so sure. Sitting down to pay a few bills I notice a fraudulent charge on one of our accounts. So I freak out, then pick up my cell to call the bank. After scouring their website and scrutinizing the tiny print on the back of the card I discover the correct phone number, as far as I can tell. So I dial and before it even rings a massive zap of electricity jolts into my brain from the phone. I mean reverberating. It drops my call and makes a tremendously loud and long beep. I look at it to see the damn smart phone I have hated since the day I got it voraciously scrolling through my contacts, calling people, pushing buttons and sending text messages reading "xlktf" and such nonsense. Channeling Linda Blair it was possessed!

Now I don't have a home phone and my husband is at work. I panic, feeling like an island into myself with no means of communication with the outside world. Eureka! I remember that thing called email. So I send my husband a message to call the bank and report the theft. Then I scour the house for my old phone, that nice and easy one from before the smartphone decided to take over my life. But I have to change my data package to drop back to the dumbphone, and lose a really sweet deal I have been grandfathered in to. No dice. So the next day I hauled my butt through 107 degrees of rollicking heat to the cell phone store to give them the possessed smartphone and get a new one to replace it. Now I have ranted in many a blog about my adverse relationship with technology. I still proudly claim the moniker "Abacus Girl", and think I just might be her for Halloween. I despised that phone because however wonderful the technology and apps and all that were supposed to be, I did not glean their usefulness. It was more like that darn thing tried to control me and I hated it like a rebellious teenager hates a curfew. With passion.

But this time is different. This time I know what I am doing. Over the last two years I have actually learned a thing or two about Droids and was determined this phone was going to listen to me, not the other way around. I refused all apps because they kept importing my contacts and it sucks having to scroll through 1,500 names to call my mom. I de-sync and un-merge and actually reboot the phone back to factory settings halfway through, starting over in sheer determination to not be antagonized by every beep signaling email notifications and app updates and thing the phone thinks I should be doing but am not. And I do it. It was like finding gold, I tell ya. These gadgets, phones, technology, can all be useful, but I have to break it down to suit my needs. At the end of the night I finally held up my phone, contacts added by hand, bookmarks set to Facebook and email, and not one darn app to get me there. Victorious! I go to bed with a smile for the first time ever thinking about my phone, because it is now meticulously tailored just for me. As I am falling asleep I think to myself this whole experience is a lot like my life. The factory settings of the world don't really do the trick anymore. I am still useful and can live a good life, but nowhere near as intense as before. Simpler, paired down. Ripped apart and reset to live life in a way that suits me. My way.

Thanks for joining,

Leah

Things Are Not As They Appear

A few years before I got sick I read a book called The House of Sand and Fog. It was quite good but a sad story all around, about life when it really goes wrong. What tweaked my attention most about this story was the multi-layered necessity of pretense. "Things are not as they appear," the father tries to explain as disaster comes crashing down around him. But it is too late. Newly immigrated to the U.S., his family has put on quite a dog and pony show to promote prominence in their ethnic community. This is not only for ego and pride, although those certainly come into play. But it is quite necessary for the success of his children, too. In order to provide the best opportunities and marry them off to the right families the appearance of affluence is critical. There is no end to the masks he wears to achieve this. Highly educated, he drives his expensive car to a fancy skyrise each day and parks it in the underground garage. Then he changes out of his suit and tie and into grubbies, setting off to do his real job, manual labor. And on the way home after work? The same charade lands him walking in the door back in the suit and tie.

For entirely different reasons I understand this man, get his motivation. It is very hard to live a nice lifestyle and lose it. My personal standard of living is drastically different now than it was before I got sick. I found it was quite helpful to have that thing called a job, to be able to pay my own way and enjoy a little of life's splendid and diverse offerings. Unfortunately such luxury has vacated us, and for how long I do not know. But my pride has gone nowhere, and I am not apologizing for it. Refusing to roam around with torn clothing and a dirty face, the absolute last thing I want is anyone's pity. No limping along like Tiny Tim, holding out my hand and mewing, "Alms for the poor," for me. So I too cloak myself in smoke and mirrors. People choose how to deal with their hardships in life in a way suitable to their person. This is how I have chosen to endure mine.

But this choice has subject my husband and myself to a fair amount of criticism and judgment. Folks just don't understand why we have money for one thing but not another. I know we appear self absorbed and quite selfish at times, and to a certain degree it is true. But not at all for the reasons others assume. I look for any opportunity to cut costs so we can afford what is important to us. This has placed me in a position I am ill prepared for, the family barber. Not only do I groom Yorkie and Porkie but I gave my husband a damn good haircut on Sunday, if I do say so myself. Then I brushed my hair over my head and into my face and took the scissors to my broomstick split ends. I ain't gonna lie, it hurt. I felt sorry for myself, and angry. Life was not supposed to turn out this way! I am 35 years-old, college educated and had a professional career that was nothing to sneeze at. But alas it has turned out this way, as life sometimes does. No matter how hard we steer the boat it simply veers off in the wrong direction. I whined to my husband about how terrible it was, poor me posing as my own stylist. He asked if I would sell either Yorkie or Porkie for $80 million dollars. It didn't take me a second to think about it. "Of course not!" I replied, shocked he would suggest selling my children. "Then shut up," he replied. "You have what is important."

Thanks for joining,

Leah

You Can Get To Livin' Or You Can Get To Dyin'

...but you can't do both. I had a doctor say this to me once. Not one I was particularly fond of, I might add, but I saw the truth in his words. Of course his version of living was to pump me full of Lyrica and Cymbalta and watch me balloon up to epic proportions, a walking pancreas attack waiting to happen. So I found a new doctor. But yesterday his phrase took on a whole new meaning, for I tried to go back to work and it was simply awful. Retail in this economy is tough, but I cannot justify hounding 75 corporate service objectives into each customer in order to squeeze every last penny out of them. It just seems so irrelevant! Today I found myself racing around at top speed, my hair frizzled out like my poodle's, sweat carving rivulets through my makeup as it poured down my face and plopped onto my shaking hands in big fat milky drops. I was constantly losing track of what I was doing and saying from one minute to the next and have forgotten basic product knowledge I could previously recite in my sleep. I was a sight, a certifiable hot mess! Well about halfway through today it smacked me in the face, I am done.

Part of me has indeed died, I have just been refusing to acknowledge it. That type-A overachiever, perfectionistic control freak, rise to any occasion and work until I collapse girl is dead. She died in that hospital bed when I was diagnosed with two strokes mere days before my 34th birthday, it just took me going back to my old job to realize this. Day in and day out my obsession has been to resume normal living, like I could just dust myself off and jump right back on the horse I was riding before my brain's blood vessels decided to put on a fireworks show. I believe it's because normal is what I fought so hard to get back when I was disabled with CFS and Fibromyalgia. It represented success to me, going back to work, having a social life again, resuming and regaining some of what I had lost. But over the last two days, with each pang in my brain or ping in my body, I became acutely aware of how vulnerable I really am and close to death I actually came. I also know how lucky I am to have survived and cannot continue to rely on my own wisdom to see me through this momentous challenge called life. Surrender goes against every value I was raised with but look where they have gotten me...not a pretty sight.

So I am choosing to put my actions behind my words and live in faith, not fear. I have to start listening to my body and recognizing the ill-fated pattern that has enveloped my life. I pushed myself into some very serious health problems by not listening to clanging warning signs, but no more. I am going to get to livin'! It's just going to be in a different form than it was before. I am so paranoid and freaked out about all the details of life I cannot control but until I relinquish that control it will be my control. I believe I was created with a purpose, have been sharpened and honed in many different ways to develop that purpose. Now I must sit back and allow it to take form in my life. I can do it my way or God's way, and I am finally ready to choose God's way.  

Thanks for joining,

Leah

This blog was originally published on 9/9/10. I was in full high-dose Prednisone swing and with renewed gratefulness am thrilled that phase of my recovery is far behind me.