Let's Go Shopping!

Trying to manage Fibromyalgia without a doctor who is compassionate, on your side and willing to work with you is impossible, simply impossible. I have seen more than my fair share of medical professionals who knew far less about Fibromyalgia than I did. I would ask them, challenge their knowledge, and find they had no clue. I would set out to each new appointment with a glimmer of hope, a bit of optimism that maybe this was the doctor who was going to help me, only to leave in tears sobbing my way home crestfallen and despondent. See they didn't know jack squat about how to treat me so they blamed, discredited and doubted me. But this isn't an illness that's just going to "go away" because modern medicine can't figure it out. Oh no, in fact the number of patients are on the rise. We are well on our way to becoming a nationwide epidemic! But instead of telling you they don't know how to treat you, or being open to learning new things, or referring patients on to specialists based on reported symptoms, they treat the patients like its our fault we got it and our fault we can't get rid of it. Like we are children who play outside after dark with no sweater on and don't eat our vegetables, then complain when we catch the sniffles. "Eat less, exercise more and sleep earlier, then your pain will get better," I've heard it said oh so many times. It makes me want to scream, "Um, excuse me Mr./Ms. Doctor, I would if I could but the source of my illness is causing these symptoms, not my choices you crackpot!"

See they don't truly understand the illness and all the multitude of symptoms that go with it. It's not just a pain syndrome. The American College of Rheumatology is proposing a new set of diagnostic criteria for Fibromyalgia that includes common symptoms such as fatigue, sleep disturbances, and cognitive problems, in addition to the tender point pain. Medical professionals who treat Fibro patients would do well to educate themselves about this illness and start figuring out how to effectively manage their patients symptoms because as I mentioned above, the number of patients is on the rise. And this is where we step in, folks. This is one place we the patients can affect real change. We can quit going to doctors who don't help us. We can quit making them rich and forking over our hard earned dollars to be treated like crap. We can take pride in ourselves and our quality of life and insist on our right to fair and effective treatment. It is critical to have the right combination of meds to manage this illness, keep the pain at bay, ensure sleep at night. And this is not the same for everyone. Part of the problem with Fibromyalgia is that it is such an individual illness, custom to each patient. It takes lots of trial and error and hard work and supported determination to take your life back from the evil clutches of Fibro, but it can be done.

So perhaps the most important step in getting Fibromyaliga managed is to go shopping for a good doctor. Like you search for a good mechanic or housekeeper, don't settle for one who does a half-assed job. They don't deserve your business! Now there are a million reasons not to do this, why it is hard and why it hasn't been done already, but I have found life is full of every excuse not to do anything. The bottom line is we deserve better and will get what we deserve so long as we insist on it. I have compiled some links to aid in finding a doctor on The Fibromyalgia Crusade website. I also put together a Doctor Appointment Pack patients can purchase for a few bucks if they are really lost where to start in turning this crucial aspect of managing Fibromyalgia around. If the doctor you see is not helping you, quit waiting around for them to change, they aren't gonna! We have to be the ones to change. I know it is extremely difficult when in horrible pain, fog-brained and exhausted, but this is quite possibly the most important step to getting Fibromyalgia under control, so put everything you have into it! If you are without insurance or on Medicare you will have to fight all that much harder for yourself. But look at it like this, if you go shopping for a new dress and the red one doesn't look all that hot go back out and look for a green one you like. And if that one is just ho-hum go try on the blue one, and keep trying dresses on until you find the one that makes your eyes sparkle and toes twinkle. Until you look in the mirror and say, "Damn, I look amazing!" Until you have found the right one.

Thanks for joining,

Leah

This blog was originally published on 9/28/10. Sadly the state of affairs isn't much improved, but I have seen hundreds of patients whose lives have improved drastically. They quit settling for what was in front of them and started believing in their fundamental right to be treated by a doctor who gives them respect and gets them results.

She Doesn't Do Anything To Make Herself Better

When I meet new people and tell them what I do, which in turn tells them what I have, I get a variety of responses. Curiosity, that's common. Empathy sometimes too. Compassion, not really, but I think that's because I work so hard to appear "normal" for the few hours a week I leave my house and am around living and breathing people. From the folks who know what Fibromyalgia is because they know someone who has it, nine times out of ten when I ask how that person functions I am told, "Well, not too well. But she doesn't really do anything to make herself better." Which royally pisses me off but in order to further our cause and not alienate the healthy I sweetly let them know it is startlingly common for Fibromyalgia patients to have a really crappy quality of life.

There is validity to this point, don't get me wrong, but it's such a common judgment marker that really shows me how far awareness has to go. It is extremely difficult to function, let alone "do something to make yourself better" with Fibromyalgia. People just don't get that. More to this point, however, is the fact that yes, we the patients must do a lot to make our lives better. This illness will literally take it all. Health, sanity, happiness, relationships, family, career, housing, health insurance, automobile, the freakin' clothes off your back. All of it. Everything a person holds dear and needs to survive this crazy game called life. Simply the act of getting Fibro managed for a great many people is the hardest thing they will ever do in their entire lives. But nobody seems to know this, cares to listen or begins to understand. They don't acknowledge what fighters and survivors we are just to get up in the morning and struggle through each day with a 10,000 lb. elephant sitting on our backs. So yes, we do have a responsibility to do as much as we can to improve our symptoms, but our progress cannot be measured by the expectations of a healthy person because we are not healthy people.

Some truths about Fibromyalgia:

1. We are sick, not depressed. Now we may be depressed because living with chronic illness is depressing but Fibromyalgia is not a mental illness and is not caused by depression. It is caused from a variety of different reasons working together.

2. We hurt as bad as we say we do, and often even more, but at a certain point the pain gets so big it becomes impossible to describe. Yes clothes, jewelry and even the lightest touch or sitting up can be excruciating. This pain is not being made up or over exaggerated for the sake of gaining empathy. It really is that bad.

3. We cannot take an over the counter sleep aid and count a few herds of sheep and fix our insomnia. Our central nervous system is ramped up and won't shut off. We could count the grains of sand on the beach and still not fall asleep because our sensory input is going haywire, hence the out of control and indescribable pain. On the rare occasions sleep isn't an issue there are still physiological problems present that prevent us from reaching the deep sleep stages necessary to maintain the human brain and body.

4. We don't forget things because we are aging, spaced out or drugged up. We forget them because we are cognitively impaired. See #3, don't sleep for two weeks and then tell me how sharp your memory is. Now just keep doing that for a few years...then add aging, medication and a life full of problems to that already impaired memory. And pain, constant and relentless pain.

5. We are sick and keeping up with the affairs of the healthy is usually one of the first things to go. When something is so important we can't bear to miss it we conserve our resources and push ourselves hard to engage in the activity along with everyone else. This doesn't mean we aren't in pain, only do things we want to do and use our illness for an excuse to get out of everything else, or don't pay dearly for the push. It just means if we are gonna be bed bound or in so much pain a torture rack sounds lovely, it's gotta be something that's worth it.

6. We want more than anything in the world to have our lives back. We miss our careers and friends and family. We pine for our independence and to become the capable people we once were. There isn't much we wouldn't do to have our health back, regain our lives that have been flushed down the tubes of pain and sickness. However, refusing to try every exotic berry, supercharged vitamin or special diet that crosses our path does not mean we like being sick and want to stay that way. It simply means we don't want to try that exotic berry, supercharged vitamin or special diet because we have tried hundreds and haven't found a miracle cure yet. 

So I guess that is my long winded rebuttal to the calloused statement that got me started on this rant in the first place. No I don't speak for all patients, but from the thousands I have met I know my words ring startlingly true for entirely too many.

Thanks for joining,

Leah

The Day I Passed Out On The Sidewalk

My husband and I have not been on the same page as of late. You know, when you tell him the sky is blue and he says no it's gray and within two minutes you are either screaming at each other or not speaking? Our communication just ain't jivin'. It's happened before and we survived it, for goodness sakes we've been together eleven years already, but it's still a process to get there. A requirement for our Catholic wedding was to attend a premarital seminar which actually turned out to be quite enlightening. A big topic was communication, and how our "family of origin" influences the way we relate to each other. My husband is from a hot-headed ethnic family that yell as their fundamental way of corresponding. My WASP clan was more prone to pouting and the silent treatment. So yeah, it's been a challenge melding these two together but we'd done a pretty good job. Until I got sick and life got really tough, and the misery of Fibromyalgia was mine to spew all over the safest and closest person possible, my husband. Misery loves company, right?

I was sitting in church yesterday and a memory came flooding back to me from the deep recesses of my cognizance, something I'd not thought of in a very long time. When I was knee deep in the hell of unmanaged Fibromyalgia and still working my retail job life sucked. He was miserable, I was miserable, we were all miserable! One Sunday afternoon we decided to try out a new Spanish/Peruvian restaurant and I found myself sitting in a hot little crowded dining room across the table from a very angry man. He was spouting and spewing his fear and anger all over me while I was trying to have a rational public argument. Finally I realized I couldn't keep up the battle so I did what any business woman has been trained to do when faced with an excesses of emotion. I firmly slipped my "professional" mask over my face, swallowed my feelings hard down my throat and plastered a small smile across my lips, signaling the white truce flag. Suddenly the room started spinning and little spots danced in front of my eyes. I knew I was seconds away from passing out. But there was nowhere to pass out! The place was jam-packed so I raced to the door as my body fell to the floor, fainting and collapsing on the sidewalk outside the restaurant. I came to a few moments later with my very concerned husband hovering over me, flanked by a couple waiters and pedestrians. Luckily I was fine, nothing came of it, and I believe we even went back in to order and eat our food.

Why this particular memory at this exact time? I believe it served to remind me this dear man's hand has been squeezed in my vice grip while I dragged him behind me, whipping and snapping through the hell of chronic illness for many years now. Although the disease itself didn't happen to him, in a way it did. However I am the one who has been given time to process, heal and restore. I've taken time off work and seen a therapist and talked and bitched and moaned about every issue hanging on my horizon. He had to go out and bring home the bacon and keep our family afloat, always running, always playing second fiddle emotionally. He's had to hold himself together and stuff his feelings inside and figure out a way to get through each day while his life slipped out of control right along side mine. We are in very different places in life right now. The high of dodging death, months on Prednisone-crack, my unrequited dreams of being a writer coming to fruition, I am moving full speed ahead into the next phase of my life. But he is not quite there with me. He's still processing, mourning, reflecting. Coming to terms with what having a sick wife has done to his life. This memory made me realize the best thing I can do for him is let him feel and quit insisting the sky is blue when he sees gray. It's okay for him to see gray, he still has storms to get through to see the blue again. As my mother said to me today, "Men are much smarter than women. They figure out on the second day they are not going to change us. Sometimes the best way to help your husband is to get out of God's way."

Thanks for joining,

Leah

This blog was originally published on 9/27/10 and rings as true today as it did then.

Our Day In Court

I received a little postcard in the mail the other day, one that made me whoop for joy and shout, "I knew it!" so loud it made the dogs jump. It was notification I am part of a class action lawsuit against Chase Bank (formerly Washington Mutual) for processing overdraft transactions from the highest dollar amount to the lowest, thus running up overdraft fees quicker than Kim Kardashian charges up her AMEX. I will admit it, I most certainly should be part of this lawsuit because I paid many overdraft charges for many years and I knew what they were doing the whole time. But what could I do about it, besides not spend more than was in my account, of course? Few things in life are as infuriating as incurring a $35 bank fee for an already overpriced cup of coffee at Starbucks I had to buy because I overslept and didn't have time to make before work, but would face-plant from exhaustion into a tray of eyeshadows without. I'd either be not paying attention or fogged up or in pain or just flat broke and the charges would hit, and when they did it snowballed. It took everything I had to work my part-time job only turn over my entire paycheck to Washington Mutual for bank fees, feeling like a total victim and unable to do anything to end this viscous cycle.

So yeah a handful of years later I am smiling. Looks like I'm gonna get my day in court. But I thought of the trauma this caused my household while it was happening. How stress made me so much sicker, and having a negative bank account balance is stressful! Then I thought about all those other class action participants and their individual situations. Clearly if you are included in this life was most likely not at its high point. What about the casualties of this unscrupulous business practice? The children who weren't fed, electricity that was turned off during a cold winter, jobs people couldn't get to because they couldn't afford gas? While they hopefully are getting their day in court now how on earth can any lawsuit ever reclaim what was lost while it was happening?

And then I thought of us, sick with an illness medicine does not understand or know how to effectively treat. We know we have it, something real is wrong with us, but the powers that be are reluctant to admit it. Instead patients are doubted, dismissed, degraded and dejected. Told they are depressed, unbalanced or its all in their head. Blamed for pain so grand you just can't understand it unless you experience it. A Danish study from a few years back found Fibromyalgia patients commit suicide at ten times the rate of the general population.* Various American studies have found the same or higher over here. Too many of us have been lost already as a casualty of the war we wage trying to survive life with Fibromyalgia. If this class action lawsuit shows me anything it is things DO change, justice WILL be reached. We will get our day in court my friends, we just gotta hang on long enough to see it happen.

Thanks for joining,
Leah

*Fibromyalgia comes with a suicide risk: study

What's The 911

Last week a silly timing coincidence and liberal use of an urgent phrase left me gasping for breath, certain the world was coming to an end and the walls were about to come tumbling down around me. On Thursday morning I woke up to multiple missed calls and text messages. An "ASAP I love you" from my dad, "ASAP I need your help" from my mom. Immediately I knew something grave had gone terribly wrong. My parents split when I was two and I am the only thing they've had in common for the last three decades. What on earth could've happened while I was sleeping that kicked off both their radar? What could two people who haven't seen each other in at least seven years both be privy to and urgent to contact me about, and using the exact same terminology, to boot? I grasped my throat and sucked in breath through a rapidly closing windpipe, that feeling of cold adrenaline washing through my core as terror surged through the haziness of having just woken up. I called my dad and waited, my heartbeat thumping in my ears, as he asked me about a future trip to visit him. Extremely confused, I sat raptly waiting to be told of some earth shattering debacle that would forever alter my reality. But there wasn't any. And when I called my mom she just needed a favor. I put down my phone and looked at Yorkie & Porkie, asking them what the hell just happened as all my energy, now unneeded and not used, drained from my limbs and into the gutter of an over-reactive stress response. I stumbled around for the rest of the day dazed, confused and utterly incapable of accomplishing one darned thing. Needless to say this entire experience was extremely annoying.

For the next few days I mulled over this exchange. Something significant had been shown to me, but I wasn't quite sure what to make of it. And then yesterday I figured it out. I'd tried to resume living normal life. Normal life is complicated, demanding, met with many expectations. There are endless numbers of people to let down, balls to drop and opportunities to fall short. Normal life does not respect sleep, solitude or peacefulness. And normal life most certainly does not provide a safe respite for Fibromyalgia, no matter how managed it may be. But everyone I know lives there, and I used to, too. It's familiar, the place I thought I needed to return in order to trump this nasty illness. The life I have focused all my efforts on getting back. But what happened on Thursday morning made me realize with stumbling clarity I can't live in that world anymore.

It's a viscous cycle. I work really hard to take care of myself and will start feeling a bit better. So I reach out to friends and family because, quite frankly, this small little box of isolation my life has become is counteractive to my outgoing personality. But with relationships comes reciprocity, give and take, the needs of others to consider. And that is where I fall short. I can be involved with happy upbeat folks with no problems and no needs that want to put in all the effort into the relationship, don't expect me to actually call them back and don't care if I disappear for weeks at a time in Fibro-flare or moody-writer mode. But I don't know any of those people, and if I did probably wouldn't like them because I'd think they were fake. So I try to take care of myself and be an equal participant in the comings and goings of the affairs of the healthy. And then undoubtedly something happens to knock me down and I retreat back into myself, unsure of what place I can honestly occupy in the land of the living. I don't have an answer here, but at least a better understanding of my reality and the stumbling blocks I encounter on the road to return to the land of my living.

Thanks for joining,
Leah

If I Could Change The World

When I started The Fibromyalgia Crusade I was as high as a kite. It wasn't by choice and was most certainly not any fun either. But a prescription of high dose steroids was the medication required to treat my particular type of strokes, so high I was. Oh I had such grand ambition! Feverish, frantic ambition. I was gonna raise up an army of fighters formed to take the Fibromyalgia world by storm! Governors and Congress were going to be pelted with hailstorms of letters. A mission to identify and fire all the doubting doctors would sweep the nation. People wearing their Fibromyalgia awareness tattooed on their foreheads were going to rise up and the world was going to hear us and the world was going to change, damn it!

And then I got off Prednisone. It was a terrible crash from a horrible high, and once again I had to figure out how to get raging Fibromyalgia under control. This time with the added burden of a brain repairing from two fizzled tap outs. Basic functioning became tough, normal living even harder. One day I fell on my knees while walking the dogs and spent three months quivering down the stairs with less stability than my 95 year-old grandmother. I'd gained epic amounts of weight and hurt in places I didn't even have to hurt before the pounds packed on. No longer employable in my field, we were having serious money problems and my husband's life continued to spiral deeper into the mire of pure miserable survival while he worked himself to the bone and worried about me. Needless to say life had become a living hell. But it was not my first trip to living hell, just yet another return voyage. So once again I did what I have done every other time I found myself there. I fought with everything I had to get out.

It's been a few years and I am finally starting to see the sun shine again. However none of the flurry of earth shattering activism I intended when envisioning The Fibromyalgia Crusade was spun into action. I just couldn't do it. Like many a Fibromyalgia patient I've had to assess my goals and ambitions and compare them against what is physically and realistically possible. Improving the lives of Fibromyalgia patients today and tomorrow has always been our mission, and we are accomplishing this in many ways. Over 2,300 of those tri-colored wristbands and keychains are spreading awareness out there today! Patients have found hope, answers and friends. They have worked to improve their lives, started believing things could change. Or at least feel a little less lonely if they can't. I have focused my efforts where my heart his, in my words, by writing a book to bring awareness into the hands of those all around us who just don't seem to understand. So while by different means than originally aspired, The Fibromyalgia Crusade is very much championing the cause. Empowering the patients to advocate for themselves and showing the world what people with a cause are made of. By recognizing this awareness campaign is ran by an actual Fibromyalgia patient and adjusting expectations, The Fibromyalgia Crusade has grown up. The letter writing, doctor firing and National Institute of Health pressuring are still on the buffet table, but aren't gonna be eaten today.

Thanks for joining,
Leah

Where Did I Leave My Brain, Dog And Ring?

Last week was one of my more, shall we say, scattered weeks. I think I left half my brain somewhere else, at least that's how I was operating. On Sunday afternoon my neighbor knocked on my front door and pointed down to the ground. It was with utter confusion my mind registered Porkie standing there, on my front door stoop, when we hadn't been out for three hours. How was this possible? As I gathered my overheated little princess into my arms tears fell from my eyes. My neighbor said my puppy was lying on the porch when she walked up, in the full setting sun of an Arizona summer. Relief washed over me as I realized the little scamp could've gone anywhere, ran away or met with any number of disasters, but didn't. She loves us and wasn't leaving our pack if she had anything to do with it. But I locked her out, I suppose not checking to make sure she was in the house after our last walk, and saw the distant look of distrust and suspicion in her eyes over the next few days until she forgot about it or at least forgave her forgetful mother. Her mother who has yet to forgive her own self.

Then on Thursday I lost my engagement ring. In the house I am reasonably certain, but since it's lost I really can't tell you for sure. I've gone through the trash 200 times, looked in every nook and under every cranny to no avail. Time will tell and my eyes are peeled but I am finding it hard to keep my positivity. Because of course in the midst of all this I have family with ailing health, my own to contend with and every other problem big and small that makes up a person's life. Sometimes it just gets to be too much. Hard to believe in a better tomorrow when today just keeps getting more difficult. I used to dream of packing what was important in one suitcase, giving away the rest and taking off to some island to work at a resort and spend my life in blissful paradise. My version of a "turn on, tune in, drop out" for the new millennium I suppose. But even that fantasy has been taken from me because my health problems are so complicated I can't live without insurance and doctors and medication. I don't have the option of even believing such a preposterous daydream is possible these days and I am becoming quite bitter with no place to imagine my unfulfilled longing for an easy life.

Now this is my personal fork in the road, where I can split in one of two different directions. A couple not so great things happen, my faith and security gets knocked around a little and I either focus or fold. I spent the last two years folding. Every time stress would take massive bites out of my life I would lose it, melt into a puddle of damaged brain functioning complete with tears and wailing, and the certain knowledge I was NOT going to survive. A few months back I wound up in a similar but different situation as last week and didn't fold, though. Didn't run for the bottle of Xanax in fear the tantrum about to erupt would hurl me down the rabbit hole head first. It was remarkable! I hadn't felt more like myself in years. I cried, felt my feelings, then picked myself up and went to clean the bathtub. Ahhh the simple things in life. As I have relayed the fear and loss of last week to friends and family I have found my humor, though. And my priorities. Because if things were gonna go down the way they did I am overjoyed it is the ring I lost and not the dog.

Thanks for joining,

Leah

The Blame Game

The other day I was doing dishes and thinking about the 75 million steps in life I have taken to bring the Fibro dragon down. I remembered the scared frightened girl who got sick with something nobody knew much about. I thought about the years of misery, just plain misery, I endured as I searched for the steps to reduce the impact Fibromyalgia had on my life. And then I started laughing. Because I remembered that scared frightened girl had a lot of anger, and a fair amount was directed at my parents. They didn't do anything wrong to deserve it per say, but I still shot blame at them. If Fibromyalgia is genetic or the result of an overdriven personality it was their fault I got sick, not mine. I mean they made me and they raise me so why wouldn't it be? While my bank accounts fell deeper into the red and my anger became larger than itself I decided they should pay my medical bills because they had done something, albeit unwittingly, to cause this horrible illness to invade my life. It wasn't my fault, it was theirs.

Flash forward five years and that thought pattern is precisely why I was standing in my kitchen laughing my head off. Boy you sure have grown up, I thought to myself. Because in the years between blaming the world and getting Fibromyalgia to a manageable place I did precisely that, grew up. It's what allowed me to get control of my life, educate myself and figure out what was going on inside my body. Take action and seek success no matter the sacrifice. Insist on results regardless of how much hard work it took. Oh yes I wanted to give up many times. Still do, on any given day depending on how that day happens to be going. But now the thought of crediting my parents for my problems and expecting them to fix them seems simply preposterous.

Ultimately taking full responsibility for my circumstances, no matter the source or cause, is what's allowed me to prevail and keep going. And still to this day as challenges arise it is picking up that bag of blame and hurling it as far away as possible that forces forward progress. Who on earth cares who's fault it is? What matters is what I do with the difficulties that land in my lap. I can find plenty of people to blame everything on, but what good is that? For me it only incites panic and bitterness. No, I much prefer to take control and deal with things on my terms as I see fit. Life is never short of challenges. From the perspective I have today I believe they are part of what keep us growing, improving and thriving in life. It took serious health problems of epic proportions to break me down and build me back up to this point of view, though. That and the values instilled in me by my parents.

Thanks for joining,

Leah

What Is Fibromyalgia Anyway?

As I was walking down the street yesterday I noticed I walk like a duck-billed platypus. Heels in with my toes splayed out. I tried to correct my gait and point my feet straight but felt like I was walking bowlegged. So I came home and watched TV last night standing behind the sofa with one leg folded over the top of it and the foot I was standing on pointed straight. Back and forth I switched legs, trying to pull my tight muscles into alignment until my husband told me to sit down because I was making him nervous, hovering over his shoulder and all that. But just that simple correction made my hips and low back felt like I was racked up on a medieval torture device designed to pop the bones from the joints. Okay maybe not that bad but the level of stress and tension and pain in the area ran very deep. 

There are many theories about what Fibromyalgia actually is. Many. At one time modern medicine believed it to be rheumatic in origin, which includes a large number of inflammatory conditions characterized by pain, range of motion limitation and degeneration of the musculoskeletal system. So they sent us to rheumatologists to unpuzzle our pain. But upon years of further research they found no inflammation or degeneration actually going on. Which earned patients diagnosed with Fibromyalgia a pretty shady reputation because, quite frankly, since they didn't understand our pain they didn't believe it either. Now they have settled on neurology. Central nervous system damage, elevated neurotransmitters, misfiring neurons, changes in the way the brain communicates with the spinal cord thus affecting many major systems in the body. This is the definition I have clung to for dear life, screaming to anyone who will listen to me this illness is as real as Christmas on December 25th. It has to be. For heaven sakes it disabled me and made me want to die!

But now I am beginning to think there is more going on. I am knee deep in the middle of a gigantous flare. Haven't had one this bad or this long in quite some time. It's a good refresher of the weird and strange symptoms this illness inflicts. I am swollen, stiff and sore. Feel like every cell in my body is expanded and pushing to burst out of my skin. I can barely move my body or twist around. And as mentioned before my musculoskeletal system is jacked up. Could all this be from a damaged central nervous system sending excessive pain signals to my brain? I read a study recently that hit Fibro from a deeper angle. It sought to understand a different cause of why the nerves are sending a message of pain to the brain in the first place. The doctor is testing the effects of an antihistamine in quieting immune cells called mast cells which communicate with peripheral nerve endings in an effort to quiet these amplified pain signals.* He may be on to something, time will tell. We patients are given nibbles of hope every so often. Someone discovers a virus or abnormal brain imaging results or even a way to test the blood they think can further diagnostics and treatment. We sit and wait, holding our breath and praying for an answer, a way to make this whole nightmare go away. But until that happens we have to learn how to live with it. So in an effort to quit walking like an egg-laying mammal I think I am going to get off the computer and go do some yoga. Something I know can help me today. 

Thanks for joining,

Leah

*Patient reports relief from fibromyalgia in IU School of Med study

I Have Let Myself Go

I gave my husband a new handy dandy techno-fab phone for his birthday last week he is quite enamored with. He was playing with the camera last night and took some pictures of me. Well when I saw them I started crying! I look simply awful. My face is as round as a basketball, puffy with the pallor and texture of unbaked pastry dough. My limp yellow hair just blends into the illusion, providing no contrast or definition whatsoever. I have enough bags packed and ready to go under my eyes for an ample trip around the globe. And my chin? Oh how I wish it stopped at double! Folks are so reassuring, promising me this is just what Prednisone does. They say it's water weight, chipmunk cheeks, you look fine, don't worry. But I am worried! Horrified, embarrassed and really mad too. I have only gained back the 10 lbs. I lost in the hospital at the end of July but my face looks like it did when I was 30 lbs. heavier on Lyrica. I can blame some of this on steroids but have to take responsibility for my part as well. I have been eating. A lot. My portions are big. I eat for pure enjoyment without a thought to calorie or consequence and I am practically visiting the frozen yogurt shop daily. Oh yes, I am a full and willing contributor to this rapidly expanding problem, pun very much intended. 

I am a vain girl. It's in my blood, I can't help it. My darling 94 year old grandmother still puts on makeup everyday if that tells you anything. Ten years selling beauty in a tube left its imprint on me, too. So for me it's vitally important to feel confident in my appearance and I ain't apologizing for it, either. But with an illness as tricky as Fibromyalgia this resolve frequently works against me. How many times have invisible illness patients heard the phrase, "But you look so good I just can't believe you are sick!" and wanted to smack the purveyor of such careless insensitivity? I have, more than a few times. I believe this is one of the reasons Fibromyalgia is so dismissed. For the most part we just don't look sick. Eventually this disease takes its toll on the outside, though. Patients can enter deep levels of sleep deprivation, fall victim to the side-effects of prescription drugs, lose the ability to exercise or slip on a permanent frown-meets-grimace as time and illness wear on. It was easy for me to stop caring about what reflected back in the mirror when life became about surviving and enduring. It seemed ridiculous to spend effort and energy to primp and fluff myself up when there simply was no energy to spare. And what a waste to slather on makeup or coif my hair just to sit at home alone and feel miserable!

But think about a time, before you got sick, when you came down with the good old fashioned healthy person flu. After a couple of days of miserable bed sweats and delirious dreams the fever would break and you would drag your sorry ass into the shower. That action alone made you feel better, marked your arrival on the doorstep of recovery. Basically you started doing things to make yourself get well again and eventually you did. Last night was a big wake-up call for me. I believe if I want to be sick then I can live looking sick, but if I want to improve I must project that desire on the outside of my body, too. So I may have a face as round as the moon but damn it if I don't have a little blush and eyeliner on to balance out the puffiness. I may be bloated and hurting and have not one bit of energy to spare but garsh darn it, I am putting on jeans instead of sweats and brushing my hair! I am determined to look in the mirror and see a person that still, despite all the hardship, cares who is looking back at her.

Thanks for joining,

Leah

This blog was originally published on 9/22/10. As I re-post it today I am sitting in my sweats with no makeup on but can happily say I did brush my hair!

Why It Wouldn't Be Better

There is often a "trigger" event, usually an accident or illness, that sparks the neurological hailstorm known as Fibromyalgia. Mine was a momentous week when I tried to execute five massive life changing events in one seven day period. The chaos ended and the pain started. What ensued was a drastic overhaul of my reality as my basic functioning broke down over the course of the next few years. Every plan and expectation for the future I ever had was affected. Altered. Demolished, quite frankly. Normal became a heartbreaking memory and medical doctors became the bane of my existence. I only existed in the strangest kind of hell I could possibly describe. One where you think your muscles are gonna strip from your bones with pain that feels like a fillet knife through flesh. And turning the bedroom light off flips a blaring ON switch in your brain that won't slow down so you can't sleep but can't catch and ride the manic either. And you feel like this all day every day and it only gets worse and worse but every medical test returns normal results. And as you start to doubt your own sanity life slips from your grasp and you ceases to exist with the other sleeping and laughing people staring at you wondering what on earth your problem is. Like I said, strangest kind of hell.

Too many times during the last seven years I lamented the life I left. I thought about the career I didn't get to continue and the friendships I was too sick to keep up with. The lifestyle I certainly would have lived if I hadn't been struck by this mysterious destroyer of all things good and right. And I am always happy and laughing and rich and satisfied in this fantasy life of mine. Things I oh so was not before I got sick were magically mine, had I not gotten sick. The other day this suddenly struck me as preposterous. Why do I automatically assume things would be better? What if they were worse? What if I went down in a plane or lost limbs, in this magical life of my fantasy? Or had an ill child or was struck with terrible cancer? Surely these things are far worse than Fibromyalgia. So who is to say that wouldn't have been my fate? Who on earth is to say it wouldn't be better, and who is to say it would?

Life is a massive collection of experiences. Mine have taught me what a tiny little slice of all that's possible it really is. Again and again it has been slammed into me that I better grab as much meaning and purpose and love and laughter and passion as I can, no matter my circumstance, because as far as I know I am only getting to do this thing called life once. While I still can't answer why I got Fibromyalgia, how come I had strokes or what on earth life would have been like if I hadn't gotten sick, I can say I appreciate things I never would have imagined. Yesterday I turned 36. It was a very contemplative day for me. I thought about my birthday two years ago when I was given a stay of execution on the death sentence handed down just two days before. Never was there a sweeter day, until yesterday. Because quite frankly recovering from those strokes was a different kind of living hell, but another around the boxing ring for sure. I have finally recovered from the recovery and life is making itself a path again. I know we are supposed to hate getting older. The wrinkles, the sagging skin, those glory years fading further into the background. Hogwash I say! I have earned every crinkle around my eyes and the right to every, "When I was your age we didn't have a remote control and had to get up to change the channel..." story I want to tell. And the sweet satisfaction of knowing, just for today, life is still mine to live. 

Thanks for joining,

Leah