How Has My Marriage Survived Fibromyalgia?

I logged onto Facebook this morning, feeling estranged and isolated from my Fibro family. This weekend absorbed all of me in a physical pain and emotional anguish debauchery of lowered Prednisone dosing and all the joys that accompany coming off that drug. Just taking the dogs on a walk this morning picked me up and plopped me right back in the middle of Northern California, about 2007. Pick any month, the weather sucks all the time, and that feeling of every muscle screaming with the slightest movement and each nerve ending snaking and snapping pain throughout every inch inside of my body. Each step a prayer closer to home. I truly battle between accepting that this is the new me post-strokes, and this is just the adjustment of coming off Prednisone and I will resume my nicely managed form of Fibromyalgia once this drug is out of my system (what my doctor thinks). Somehow I get the feeling it is not going to be that easy. 

I glanced at my feed and my attention was drawn to a blog from the NFA about Fibro and relationships, marriage and dating. This is something we ALL deal with, for we are not the people we once were, and hanging onto a relationship from then is very difficult. So is finding a new one with the limitations Fibro imposes. Its a no-win, sticky situation. The author of the blog quickly discloses her 3 failed marriages and proceeds to describe how her illness impacted her first one, the man to whom she was married when she first got sick and received her diagnosis. She could not participate in the active social life they once shared (sound familiar?) and he went on without her. And that stopped me cold. Because it made me realize one of the key components of why my marriage is still successful is because my husband refused to do that. If we had plans and I was too sick to go, we canceled. If an opportunity arose to attend a function but it was after a long day of work for me, we declined. He would sit by my miserable and complaining and bitching and moaning side, watching Law & Order re-runs, miserable himself I am sure. But he stuck by me. I felt terrible, like I was keeping him in prison, begging and pleading him to not quit his life because I had to quit mine, but he always refused, never a question in his mind that he would rather be with me as I was than without me anywhere.

So when I started getting better and living life again, we started living life again. And as we discovered the reality that mess of an illness left my life in, shambles and broken, it was our life to put back together again. I started hearing from him that he was so glad to be getting his wife back. Still to this day he is quite protective of our time and does not want to spend it with a lot of other people. How did I get this lucky? Beats the hell out of me, but that is what I got. It is normal, I suppose, to put your own needs above your partners or "the relationship's" needs. But my husband was never that man. He wanted me by his side in everything he did or he was not going to do it. He has always been a bit obsessive, and our relationship is no exception. He has sacrificed in many ways, because of my illnesses. Yet last night as we are going to bed I shake my head and say, "This has been an insane life, a crazy last 5 years." His reply was that it had been for me. I was the one all this crap had happened to. I asked him so what, then, he has just been along for the ride? He smiled and said yes.

Thanks for joining,

Leah

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My Tattoos

I have seven tattoos and am nowhere near done. I started at age seventeen with a blooming sunflower stretching across the right side of my lower back and top of my butt. Not quite a tramp-stamp, it actually saved me from that now dreaded lower back tattoo many girls my generation are frequently left not so proudly sporting. My senior year of high school I guinea-pigged it with my friend's tattoo artist boyfriend and let him create permanent art on the back of my body. The second I felt the intensity of those multiple needles piercing and poking into my flesh, depositing eternal ink strokes deep within my dermis, I was hooked. It hurt so good! I suffered through the sitting, the involuntary flinch of my skin crawling and the spearing into each pore of flesh produced a desirable pain. What imprinted on my mind as it drifted past the haziness of whatever Valium induced trip I was on were the smells and sounds. The buzzing tattoo gun and billowing cigarette smoke, the blaring punk rock music and distinctive scent of disinfectant and ink.

My next tattoo came a year later in the form of a flower encrusted inner ankle. My father lectured me about regretting these tattoos when I was older and I told him, confident and sure my 18 year-old self had it all figured out, "I will never regret a single tattoo, because to do so would be to regret who I was in my youth, and I am never going to be that person!" Oh the poor guy! The bouquet of purple irises, future theme for my far far away wedding, was secured deeply within the layers of my skin my sophomore year of college. Nestled between my shoulder blades, the graceful stems stood proud and tall against the creamy flesh covering my spine. The next one was either the small leo symbol above the sunflower on my back the ink fell out of immediately, leaving only an outline, or the design of my own creation, a turquoise and brown marbled diamond of scar-tissue resting on the inner top part of my left arm.

College ended and life started and money went dry. I sat stagnant with the five I had until we were living in San Francisco a few years later and strolling through Haight Ashbury one lazy, sunny Sunday afternoon. That experience left me better off with a beautiful yellow and orange calendula with drooping, lush petals encased in a teal border enshrined on the top of my right arm, just under the shoulder. I had now entered the realm of the visibly tattooed. Never again would I be able to hide behind the innocent illusion of my blonde tresses and pearly white smile. As long as my upper arms were showing. I had proclaimed an eternal edge, risk to my persona. It gave me a certain notoriety and served to stereotype me in a completely different way than ever before, and I kinda liked it. It felt good to put the inside me on the outside of me.

In 2006 my husband and I were anticipating our 5th anniversary and wanted to do something to commemorate our union. I was about a year into CFS/ME, still working and yet to fall flat on my ass from full-blown Fibromyalgia. The Sacred Heart called out to us as a tribute to the blessing of our marriage, and we each commissioned a representation of this beautiful image suitable for our person and gender. His was strong and masculine, stemming down from the base of his skull, the large cross at the top merely an outline against the licking, burning flames. His heart was dark and troubled, and his thorns long and sharp. Mine was a more classical depiction, a soft red heart dripping nectar from the wound, flames securely enveloping the small wooden cross above it. My fresh green thorns tangled into a matching blend of our initials, mimicking his barren dead shards.

They are both beautiful and we wear them proudly, but it was damn near the most painful self-inflicted thing I have ever done to myself. Tattoos may hurt so good, but a tattoo with Fibromyalgia on the inside fleshy part of my upper arm was hell in a hand basket. I had to dig my nails into my stomach to counter balance the pain. I practiced what I imagined to be Lamaze breathing methods to create distraction. I forced myself to lie still and not move, all the while crying out inside from the searing, burning pain. About 1/3rd of the way through I realized this was a very bad idea. Wrong place, wrong artist, wrong time? I don't know but it was just wrong. I looked down and he was nearly done with the outline. What the hell was I going to do with just an outline? When would I ever want to come back and finish it? So I guided my husband to continuously squeeze the shit out of my hand and settled into blinding misery. Near the end, as the artist was coloring in the contours and shadows up in my arm pit, my body was involuntarily writhing. The tattoo had become so red and inflamed, an oozy gush of a mushy bacteria filled petri dish. Red hot infection was radiating around the brilliant glow of my newly crowned Sacred Heart. I had to treat that tattoo with antibiotic cream and lots of moisture with very little friction. It is my most beautiful and prized today. Better be, I went through hell to get it!

Each tattoo is a permanent mark on my body that perfectly captures the person I was at that time. An image that does not grow with me, into the person I will become or have become, but stays true to who she was then, unable to mould and grow with the future. Each tattoo, style, location, a stamp in time. I capture my tattoos in a quick glance in the mirror now and then and think about the experience of each one, and it is a hauntingly real encounter to remember what it was like to be that girl. Sorry dad, this time you were not right, I don't regret a single one.

Thanks for joining,
Leah

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I Have Changed My Name To Leah Basket-case Tyler

In the interest of full disclosure I am having a meltdown! This must be my 4th or 5th attempt starting a post today and nothing seems meaningful or purposeful enough to warrant 3 whole paragraphs. Hell, I get 2 lines down and get up to sob and pace because I am so frustrated! I started blogging from my heart last spring and opened it up for others to read in August. I was so impressed by the fact that 2 strokes did not kill me or render me severely disabled and felt a strong calling to expose my heart, soul and experiences to other Fibromyalgia patients. And then wham, bam, thank you mam, 5 months later I am heading this huge crusade that is going to march global Fibromyalgia Awareness into existence? And here I sit today wondering HOW IN THE HELL AM I GOING TO DO THAT?

I can write, I can feel, I can manage my Fibro and sit around all day thinking of me me me. I can do yoga and walk Yorkie & Porkie and cook dinner every night, but this has gone far beyond that. We are garnering too much attention to let it slip past, but I just don't have the whatever it takes to do it all myself. Oh yeah, health! I sit here, anxiety off the charts, panic gripping my heart whenever I think of it. Knowing I have to figure out a way make this work with no clue how, and complete faith it will happen.

Thanks for joining,
Leah

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook (link from my badge on the right). Thanks!

State of the Crusade Address

Holy Shazam folks, shut the front door! The t-shirts have been ordered and should be ready for sale in the next couple of weeks. Oh I am so excited I could cry. Tears of joy, of course! There is so much movement happening with The Fibromyalgia Crusade. I want to give a little recap of what we have achieved and also let you all know where we are setting our sights next. I have a million plans and goals and aspirations and little notes jotted down on my "to do" list. I could absorb myself in Fibro awareness 24/7 for the next month and barely make a dent. But living that crazy, hectic, high-pressure lifestyle is one of the characteristics that got me sick in the first place, so I must practice prudence and proceed at what I will now fondly refer to as "Fibro Patient Time" (FPT). I must practice balance and taking care of myself as my first priority. You know, take my own advice!

We are grasping the grass-roots of this awareness campaign and ripping them out by the handfuls, planting a solid foundation of blooming bushels of Lilacs in their place! We are talking to doctors (the good ones we like) and people are asking what our awareness bands are all about and we are gaining strength in numbers. We are growing stronger and bigger each day. We are gaining confidence and moxie and are no longer sitting around desolate, lost and alone. We are making friends and finding comfort and solace and trying every which way we can think of to get some quality of life back. We are putting our foot down when those we know and love, or just come into contact with, are rude and degrading. I am so proud of each and every one of you for seeking out support. I know it is doing wonders for me and can see how much better many of you are doing  as each day goes by. The ground-work for an attention-captivating Fibromyalgia Awareness campaign is firmly in place. This blog "went live" in August, our awareness campaign, The Fibromyalgia Crusade, was launched in September and The Fibromyalgia Fun House on Facebook started in October. As we talk and educate, and more patients seek out support for their diagnosis, it has become overwhelmingly obvious Fibromyalgia awareness is an illness in need of a makeover!

We need a unifying symbol, a common icon to identify us. There is so much division among patients and doctors regarding the scientifically unknown cause of this illness that obtaining acceptance or understanding from people without Fibromyagia darn near impossible. But we are here to change that! Fibromyalgia is an illness that does not discriminate, and neither do we. Despite our many differences, be it geographical, marital status, political views, religion, sexual orientation or ethnicity, to name but a few, we are all united in the fact that we have been diagnosed with Fibromyalgia. Unlike breast cancer, prostate cancer or AIDS, there is no commonly identified symbol for Fibromyalgia awareness (because it hardly exists!) and I have set the goal that our purple ribbon, with its shades of Lilac, Mulberry and Amethyst, will become that symbol!*

 What we have done...

• Our support site on Facebook, The Fibromyalgia Fun House, has nearly 1,650 members.
• This blog, Chronicles Of Fibromyalgia, has received over 37,000 hits.
• We are the 5th most popular Fibromyalgia blog on Networked Blogs. 
• We have shipped out over 300 The Fibromyalgia Crusade awareness bands and key chains.
• We have developed a "Doctor Appointment Packet" to guide those who need help finding a good doctor. One that will take them seriously and work with them to manage their symptoms.
• We developed a post-card sized downloadable informational summary that explains Fibromyalgia, The Fibromyalgia Crusade and The Purple Pain Code to pass around and spread awareness.
• The "Purple Pain Code" has given us a quick and easy way to communicate mood and pain levels.
• We have taken a stand and stopped seeking treatment by doctors that display disbelief, degradation or doubt in Fibromyalgia and refuse to continue making them rich! 
• The Fibromyalgia Fun House has become a place to vent frustrations and despair to those that truly understand, and then wind up laughing cause we really are a silly bunch after all. It makes it easier to relate to our loved ones when they are not our sole source of support for this all-encompassing illness one simply cannot understand unless they have it.

What we are working on:

• T-SHIRTS have been ordered! It takes time to develop a quality product at an affordable price and I thank you so much for your patience!
• A variety of other awareness items are in the works as well.
• We are working on drafting letters to our various representatives in the U.S. government, requesting May 12th be declared National Fibromyalgia Awareness Day.
• We are devising letters to inform the degrading and emotionally abusive medical professionals that don't "believe" in Fibromyalgia their behavior is unacceptable and is going to be reported to multiple medical authorities. 
• I am actively searching for THE BEST Fibromyalgia research organization to donate 5% of the profits of the merchandise we sell. Any suggestions please email or message me.

So as you see we are growing, making an impact and offering support, acceptance and guidance! We are taking control back in our lives. So many felt helpless and alone, were made to feel crazy, lazy, wimpy or like junkies. Fibromyalgia is a very real illness, but not to those that have never heard of it. So use your best asset, your voice, and start talking and just don't shut up until Fibromyalgia is a household word!

Thanks for joining,

Leah

www.fibromyalgiacrusade.com

Facebook ~ "The Fibromyalgia Fun House"

fibroblog@gmail.com

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook (link from my badge on the right). Thanks!

 *All of the thoughts, ideas and images including, but not limited to, the name The Fibromyalgia Crusade, the gradiated purple ribbon and the Purple Pain Code colors, are the intellectual Copyrighted and Trademarked property of Leah Tyler Enterprises. All attempts to use the aforementioned in part or in its entirety without the expressed written consent of Leah Tyler Enterprises is strictly prohibited. Any violation of this decree will result in immediate legal action.

Fibromyalgia Is Not Santa Claus Or The Easter Bunny

Fibromyalgia is not something one can just choose to believe or not believe in. It astounds and confuses me that many in the medical profession have taken this attitude. The medical community named Fibromyalgia when patients started coming to them with a new set of symptoms none of their existing diagnostics could categorize. That was many years ago and sadly the number of Fibromyalgia patients keeps growing and growing, as does the number of doctors that don't want to deal with us. I cannot comprehend the logic that resides in our medical community. Doctors, researchers and scientists know full well that new illnesses and diseases spring up constantly. They challenge existing schools of thought, methods of diagnosis and categories of classification. Yet because this ailment they named Fibromyalgia is not terminal or readily diagnosable with existing diagnostics it has become a phantom illness, something one can choose to believe or not believe in. I just don't understand...

Mr. and Ms. Doubting Doctor, there is something wrong with me. Quite frankly I don't care what you want to call it, but dismissing me, degrading me, calling me a liar with your refusal to believe I am actually suffering with intense, severe and life-altering symptoms is blatant disrespect. The "I don't treat Fibromyalgia patients" attitude only shows what a limited and ignorant professional you are. Your refusal to acknowledge what your superiors have named Fibromyalgia goes to prove your continuing education is NOT up to date. Have you learned anything new since graduating from medial school? Do you not read JAMA, The Annals of Internal Medicine, the variety of other medical journals that keep your knowledge relevant and current? Do you not attend conferences and lectures to continue learning as the fields of medicine and science progress? Shame on you for practicing in a field that requires constant re-education to remain a viable practitioner of medicine when you do not have the heart to understand its progression.

Your flippant "I don't believe in Fibromyalgia" attitude has done MAJOR harm to a large and growing number of patients that are very sick. It has spread doubt amongst their families and friends, those they depend on for support. It has caused undue hardship from employers and disability assessors as each person struggles to continue to support themselves while experiencing constant and pervasive pain, to name just one symptom of Fibromyalgia. The pure emotional and psychological anguish the impact your attitude of disbelief has caused Fibromyalgia patients is, in and of itself, a violation of the Hippocratic Oath. You have done plenty of harm to the patients that suffer from a central nervous system sensitivity that results in a heightened sensation of severe body pain, deep sleep disturbances, cognitive impairment and confusion and other myriad of symptoms, regardless of what name you want to give it. So unlike Santa Claus or the Easter Bunny, the illness that has been named Fibromyalgia is real, as real as the air you are breathing into your lungs right now. It is not something you can just decide if you want to believe in. It does exist. So take a moment to educate yourself on this confusing, understudied and currently incurable ailment because it is indeed real, regardless of what name you want to give it.

Thanks for joining,

Leah

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook (link from my badge on the right). Thanks!

Don't Quit Until The Job Is Done

I was raised with a good-old fashioned work ethic. You do your best, consider a job completed ONLY when the outcome is satisfactory and don't stop or give in when it gets tough. So that is how I lived my life. Powering through whatever obstacles were in my way and not stopping until I could present a job well done. I pushed my way up a career ladder I did not want, but did it anyway, because that's what was expected of me. I worked 12 hours a day running up and down the state of California, making sure enough lipstick and eyeshadow had been sold in order to keep my bosses happy. It was stressful and consumed my life. But I did it because that is what I was taught to do, achieve what is expected of me. Life is tough and only the tough make anything of themselves, so get goin' girl!

That attitude is the single most detrimental contributor to my CFS/Fibromyalgia story. Oh how I wish I had acknowledged that lifestyle was dynamite lit on both ends, how overwhelmingly unbalanced  it was and paid attention to my body when I started developing health problems. Instead I just ignored them, anxious to return to life and that oh-so-important job of mine. Unwilling to skip a beat, lose momentum, get behind in this race of a game called life. Slowly but surely I just got too darn sick to ignore it anymore and I had to make some adjustments. I have been slowly adjusting ever since. Reducing my workload, stress, household cleanliness standards, you name it, I have conceded! But I have been re-building other things in its place. I was forced to shut out the world and get very quiet with myself. Sit around and do nothing, literally, for months on end. I had to look within and try to figure out what I was racing around trying to avoid. What was I running from?

Well I found it! Through lots of therapy and self-reflection and good old fashioned God, I found it. I was living life offensive to my true nature. The generational patterns I was raised to continue on with were detrimental to who I was fundamentally. Slowly but surely, brick by brick, I have found a way to exist with inner peace and harmony because the garbage I had filled my life with was not me. Am I glad it took CFS and Fibromyalgia to get me to pay attention to my choices, my reality? No. But I do know the person sitting here on the other end of your computer screen would not exist today without it.

Thanks for joining,

Leah

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook (link from my badge on the right). Thanks!

The Guilt Game

Right around 2005, when I first became ill with what has now progressed to Fibromyalgia, I started playing a game. It was not a good game, nor could I find anyone that wanted to play it with me. It was a game that caused the people I forced to engage, myself included, feeling desperate and awful. Yet I continued to seek it out, almost as a default, and relished in the havoc it wreaked and sorrow it created. It is called The Guilt Game. I felt so darn guilty for being sick and the impact my limitations had on my family and friends. I figured if I beat them to the miserable punch it would somehow lessen the burden my illness had on their lives. Boy was I ever wrong! It only served to spread this depraved misery round and round until the room was so thick with the fog of my guilt even I had to get away.

When my husband and I decided it was time for me to quit regular employment and take a freelance position we graduated to The Guilt Game II. I decided ALL the components that make a household successful were my responsibility. My husband worked excessive amounts of overtime and was perpetually exhausted. He tried to glean bits of fun and relaxation where he could, and I could not in good conscience ask him to go clean the shower on his 1 day off a week! So I struggled through it and adjusted my standards considerably. I was still working a couple of days a week and was greatly affected by the retail-on-your-feet physical aspect of my job. Yet the second he tried to wash a dish or prepare a meal I would freak out, hobbling my throbbing and aching legs into the kitchen to shoo him out and do the work myself. Oh would he get mad at me!

See somewhere along the joining up of our life and my illness I decided domestic work was mine, and paycheck work was his. I don't know if it was my upbringing, my desire to be a good wife or a way to feel less guilty about my illnesses and how incredibly limited I was. I only know it was very important for me to assume all household responsibility. It represented there was still something I could do to contribute to our life, a way to take care of my husband and try and make his life easier. I felt elephant-on-your-chest-guilty for how hard he worked to support us. I also sought out a way to remain relevant, still be needed. I could not just drop out of life all together and fade into the background... This Guilt Game is still something I struggle with daily. I have gotten quite a bit better about it, or at least about expressing it. But my husband just came home from the grocery store after a long day of work and is preparing to cook dinner. The fact that I am a crying sobbing mess about it means I still have a long way to go baby!

Thanks for joining,

Leah

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook (link from my badge on the right). Thanks!

A Unified Front

There are so many variables with Fibromyalgia. Some people have this symptom, some have that symptom. Some have found ways to heal while others have not (surely not for lack of trying!). Some are so severe they can barely walk and live on narcotics while others lift weights at the gym daily and work 2 jobs. 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 radiation blaster 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!

Last year I had to get a root canal. I was extremely paranoid about the hurt involved, never having had one before and knowing how overly sensitive I am to any sensation of pain. The 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 lying in the examining chair and told me she had Fibromyalgia as well. I asked her how she managed it. She pompously informed me that 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.

But I have noticed this attitude over and over again. There are so many different theories out there. Root causes, nutritional deficiencies, neurological, 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! And then there are so many other conditions most Fibromyalgia patients suffer from as well, each encompassing their own complexities of cross-over symptoms. But the bottom line is that 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 1 protocol works for every patient. This is the crux of our problem!

I believe if we, the patient body, accepted that Fibromyalgia is indeed a cluster of varying illnesses sharing similar symptoms, and showed a bit more compassion and understanding to our fellow-fibrates, the acceptance and support would go a long way to 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 MD's. The way we relate to each other has a huge impact as well! I see a fair amount of judgment in our fraternity towards its 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 this 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 1 size fits all disease!

The reality of Fibromyalgia is that 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, with one voice, if we ever expect validation. I even find myself (before I sat down and wrote my nifty little synopsis) focusing on my individual experience instead of a general overview of what the disease is and how it affects those afflicted. 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.

I have just defined the platform for phase 1 of "The Fibromyalgia Crusade"! Let's stand together, accept that Fibromyalgia is a DIVERSE disease and support our fellow-sufferers with compassion, acceptance and understanding, not harsh judgment or dogmatic close-mindedness. Let's recognize that my Fibromyalgia is not the same as your Fibromyalgia which is not the same as their Fibromyalgia. But we all have Fibromyalgia! Let's bring awareness to a whole new level by accepting each other first, and then demanding acceptance from the world at large. God bless us all!

Thanks for joining,
Leah

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook (link from my badge on the right). Thanks!

Forget The To Do List, It's All About The Done List!

I am a miserable victim of "To Do" lists. I write down EVERYTHING that needs to be done and then freak out at the sheer gravity of it all, knowing hours of endless work lie ahead of me. With no idea of how to get the energy harnessed I frenzy myself into crazy mode, forcing myself to get a grip and take that figurative "relax" pill. When something approaches a deadline I do get it done and am able to function through life this way, just not very cheerfully or peacefully. Well yesterday I had enough. Thoughts, obligations, ideas, necessary transactions, appointments and responsibilities were swirling around my head and I yelled STOP! Stop with the endless amount of obsessing and dissatisfaction I put on myself. Let it go...

Clothes are always going to need washing, toilets are always going to need cleaning, dinner is always going to need cooking and calling the insurance guy about the mix-up in billing is something that should be taken care of immediately. So in the interest of truly flipping my thinking I took a moment at the end of the day yesterday and wrote down what I did accomplish. I did not compare and contrast this with my "to do" list, just paid attention that amidst the madness of my life, where I constantly feel like a hamster spinning around on a wheel to nowhere, I took a moment and looked at the positive. I had gotten more than a few things done, more than it felt like. So I think I am gonna try this out for a while. That big ugly master to-do list is hidden in the back of a drawer and I am marking down each day what I DID accomplish, not what I did not.

Thanks for joining,

Leah

P.S. Please "Follow" Chronicles Of Fibromyalgia on Networked Blogs on Facebook. Thanks!

Bring Me The Meds

For the past two days I have taken Xanax all day long to simply not freak myself out into a hysterical hot mess. I am either sobbing, screaming and throwing things or drugged up in some half-existence, one where nothing much bothers me, nor inspires me. I am kind of just here. I simply cannot take all the crying and pure anger and aggression flowing out of me that changing medications induces. This happened to me a couple of years ago, before I discovered sedatives, and that was one seriously messed up and suicidal time in my life. I LITERALLY thought I was coming unglued and did not give proper weight to the affect coming off Cymbalta and Lyrica would have on me. I saw a therapist, which  was helpful, but low and behold a few months after all those meds got out of my system and the new ones stabilized I was my normal happy-go-lucky smart-ass self again! Who ever woulda thunk it!  

Us Fibromyalgia patients struggle, oh how we struggle, to find a way to manage this beast of an illness that modern medicine knows very little about. It does not help that we all respond so differently to the myriad of medications used to treat this illness. For one person something may work great, for the next it is a catastrophic explosion of side-effects from hell. And the pure joy of it all is that you don't know until you try it! Meanwhile the pain is crippling, the insomnia maddening and the misery life has become completely overwhelming! I was put on 60mg of Prednisone after my strokes in July and just stepped down to 2mg today. Two weeks on that and I am off this drug for good! Oh glory hallelujah! It has been a maddening and crazy 6 month run and I am counting the seconds until I am done with steroids for good! They may have taken my pain away but I was such a manic nut, eating everything in sight, growing hair all over my body, a bushy and full mustache included, that I decided Fibromyalgia beats Prednidone any day. At these lower and final levels, each step down is a maddening fluctuation of emotions and excruciating, unbearable emergency room pain. Two more rides on that train and I am done. I am holding my breath and hanging on tight...

We are blessed to live in a time and place where many illnesses can be treated, cured or managed. Fibromyalgia is one that can be managed, but simply taking a pill your doctor prescribed is not going to do it. Us Fibrates have been called to a higher form of living. We must examine our lives scrupulously and learn how to quiet our inner tyrant, screaming and hollering endlessly about the person you were and the obligations you should be fulfilling. We must look at the choices we make; how we spend our time, how much sleep we get, what kind of diet we eat and exercise we get, what kind of people we hang out with and are obligated to, how much stress we exist in, how much anger we hold on to, and make a very conscious decision to put ourselves first. When I was living in San Francisco I was having lunch with a friend one afternoon. Her husband is an alcoholic in recovery and she was needing him to do something or another that conflicted with his AA meeting. He refused. He simply stated that AA was something he had to do for himself or there would be no husband or father around to do anything for them. Yes it annoyed her, but she accepted this was part of the man she loved and chose to spend her life with, and figured a way around it. Now if we could just get all our friends and family on that page, we would really be making progress!

Thanks for joining,

Leah

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Stop The World, I Want To Get Off

Well I sobbed on my walk with Yorkie and Porkie today. This is becoming quite a trend! The feelings of frustration and anger and just being sucked and sucked and sucked dry is overwhelming me! That joke of a stay-cation with my husband really got the ball rolling and I am starting to fall apart! I have today and hopefully tomorrow without the excruciating Black Bleeding Amethyst pain stepping down on Prednisone gifts me with. I have not done yoga in 2 weeks now and was up until 3am just getting the house put back together. Not clean, no laundry or bills or anything really accomplished, just took it out of after-the-bomb-shelter mode so I could actually find things. Everything in my life is unfinished or needs to be done, or started, for that matter. 

What I really need is a retreat all to myself. Where I can wake up each day and know that day is mine. Not Fibro's, not my husband's, not The Crusades, not my home's, not the telemarketer's trying to sell me vinyl siding. Just mine to make whatever I want out of it with no responsibility if I dare to forget about anything obligatory. Dream on girl, we all need that! Back when I was living in San Francisco and working in the department store, one of my employees who had CFS spoke with a client, a doctor in Italy, about the illness. The doctor felt it was an environmental sort of illness and the best way to recover was to CHANGE YOUR LIFE COMPLETELY. New husband, new job, new country to live in. Just start over. There are many things in my life I would never let go of, but I am so burnt out and need a break and quite frankly, certain aspects of that theory sound appealing to me!

So in the midst of all this self-pity and wallowing and anxiety and tears I decided to sign up for Spanish Conversation class at the community college. I took Spanish 1 last spring and LOVED IT. Worked my much-smaller then tushy off for an "A". I had serious concern that I would be able to learn and retain new information, but low and behold, this tired ticker up here actually did! And quite well, I might add. It soon became something I was solely doing for me. Something that benefited no one or anything else in my life and I relished the opportunity to pursue a dream, my dream. Learning Spanish is one of those "life to do list" things for me. I want to live in Spain one day, love to travel in Mexico and plan to  extensively explore Central and South America. Unfortunately I had to halt advancing my studies because I was so jacked up on Prednisone after my strokes that to sit in a classroom and try and pretend to be normal during fall semester was a joke. But I am trying again. Fall off the bike and get back on. Nothing too hard or challenging, for this stroke survivor can't push too hard, but it will keep Spanish fresh on my mind and give me some routine and expectation to my week that takes me away from cooking dinner, folding laundry and cleaning toilets in an endless circle every day.

Thanks for joining,

Leah

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A Stay-cation Is Not A Vacation

10 days with my husband at home. 10 days. For you long-married women out there I don't even need to say anything more. For the rest of you, well, it was SO good to have time to relax and spend together but was quite hard on me personally, and hard on the organization of our life, which I manage. I woke up this morning to a VERY messy house, un-organized everything, seriously unpaid bills and major panic over how to put it all back together again. I feel overwhelmingly disconnected from this blog and our Fun House. This has really made me truly grasp how important The Crusade, and all the components that make it what it is, are to me. It is anchored deep, my life force, in my blood, my beating heart. In the midst of stay-cation madness I had to place another order for Awareness Bands and that, in and of itself, makes me jump up and down with glee (and then go take a Tramadol)! We really are marching forward, moving ahead as we talk and talk and pass out postcards and show off our awareness bands and key chains. The strength The Fibromyalgia Crusade brings makes it so much easier for ME to talk about it, and I hear that same musing from so many of my readers and friends.

During this vacation-at-home my husband and I faced many challenges that are easy to ignore or sweep under the rug when life together is delegated to 2 short days on the weekend. The first few days were fun, kinda like "playing house". Everything I dreamed of when I was a little girl and would hope and wish about my future. We were autonomous adults with no responsibility! It was great! But then the days kept passing and I slowly lost my grip on any illusion of control over my life. We started staying up till 3 o'clock in the morning and waking up at noon. My husband is a man (obviously) and takes 20 minutes to pull himself together to get out the door. I am a woman and need a good 45 minutes, and that is just the time I need for me, my business not included. So while he jumps up and is ready to go start the day I have barely turned on the computer, checked in on the Fun House, email or blog, paid bills, signed up for classes or any of the other myriad of responsibilities I hold, being the household manager. My desire to make my husband happy and ensure he enjoyed his much needed time off far outweighed my personal needs and I slowly but surely, without even being aware of it, became the sacrificial lamb. I washed my hair once, showered maybe every 3 days and left the house without makeup on more than I care to admit (I know this is not important to everyone but it is to me). I did not exercise AT ALL and basically felt, the last few days, like a marionette that existed for his amusement.

Now I am in no way blaming him for this. These were all choices I made. And I believe this was a necessary process for me to go through, forcing me to take a step-back and look at my life. I was just needing an excuse to indulge my every whim and my husband's vacation provided it. I wanted to let all order and discipline go and see if it still existed without my enforcement. Obviously it does not. I constantly vacillate between being uptight and efficient and relaxed and enjoyable. I have yet to find a way to meld the two. Life is short, and every moment must be enjoyed. But a life of chaos where I neglect my core values, what is important to me, is not enjoyable. So it is in finding the middle ground, where true success lies, that I am working towards. He went back to work this morning and I woke up, took one look at the bomb-shelter my house resembled, and declared myself a calm and serene purveyor of the household. I set my efforts toward fixing all that went awry over this last week, both with myself and my home, and in a few days all will be back to normal. Hopefully with me a little clearer in my heart and mind on who I am and what it requires to be that person. But one thing is for sure. The next time he takes any time off of work I am going camping, with our without him.

Thanks for joining,

Leah   

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Get Well With Brielle

So after that doctor appointment where I was told I needed to "figure out how to get myself better" I decided I had nothing to lose and searched my health benefits for acupuncture coverage. I had a successful experience with it following a car accident when I was 16 years-old that cured me of migraines the crash had left me with. There were no insurance benefits, per say, but a few acupuncturists had a reduced-rate they offered us policy-holders. I called 1 that was in close proximity to my house and set up an appointment. I shuffled in to said appointment a few days later in my usual pathetic fashion of that time; sweats, slippers, hair in a bun with no makeup on, late as usual, glad I had easily found a parking space right across the street. I was warmly greeted by a Caucasian female close to my age with a kind face and amazing aura of positive energy about her. Her office was serene and relaxing, full of tastefully displayed Asian decor and soft, flowing music. She quizzed me on the state of my health and then had me lie down as she probed her thin, wand-like fingers over my body, immediately zeroing in on all my "hot spots" of pain and tension. She then went to work and poked needles ALL OVER MY BODY...in my ears, feet, all my "tender" points, shoulders, back, legs, arms, neck, head, you name it, I was a human pin-cushion! Then she left me for a good 30 minutes to marinate in that state. When she came back in she flipped me over and did the same thing on the front of my body. Each needle poke was profound! As they probed and slipped into every painful, tension filled, toxic oozing bundle in my body I felt things that had been bound so tightly for so long start to release.

At one point during my trance-like-doze I heard a car alarm wailing repetitively from outside and thought to myself, "That kinda sounds like my car", but ignored the hunch because the 20 needles in my body certainly took precedent at the moment! What was I gonna do, pop up and race outside half dressed, needles protruding from my body like some voodoo-doll gone wrong? When she came in she de-needled me and gave me an intense massage, pulling tension and stress out of my now-loosened up bundles of nerves. I felt amazing! We set up a follow-up and I left feeling better than I had in years. But as I walked up and down the street I could not find my car. Clicking my key-fob and hearing nothing, it slowly dawned on me that maybe it was indeed my car that was the wailing alarm I had heard earlier. I called the police station and was informed I had parked right in front of the driveway to an apartment complex and had been towed. I HAD DONE WHAT? Talk about fibro-fog! I could have sworn that was a parking space, not a driveway. No wonder I found parking so easily! I had to WALK to the tow place and pay them something like $300 to get my car back. Oh my husband was NOT happy with me!

I kept seeing the acupuncturist, each appointment walking in feeling like I had been smacked around in a boxing ring and leaving feeling partially human again. This woman was amazing, and as we got to know each other she dared to venture places she had never gone with any other Fibromyalgia patient. One afternoon she went deep. She tapped into a "cord" that started in my upper right neck, through my shoulder blade, snaked diagonally across my mid-back and down into bad sciatica pain on my lower left side. As she popped in the needles like a trail of bread crumbs through this tension cord I could barely take in a shallow breath, the pain and constriction went SO DEEP. But after a half-hour of shallow breathing turned into full, deep breaths as the cord slowly began to relax I felt amazing! That was a big turning point in my recovery. But by far the trippiest experience I had was one afternoon when I struggled in, my female cycle leveling me to ground zero once again. I was complaining about my adrenals...they felt so slow, sluggish, blocked. So she probes her fingers around the inner part of my knee and pops the needle into my "adrenal zone". A flaming ball of FIRE shoots up my leg to my hip, back down and out my toes, and I involuntarily KICK HER! She looked at me with wide eyes and told me she felt the electricity shoot out at her through the needle, something that had never happened to her before. "Told you my adrenals were blocked", I said. That experience opened up a whole new flow in my body big time.

She is one of 4 reasons I was reluctant to leave the Bay area (the others being 2 restaurants I just can't seem to replace and best friends that have since moved anyway). She helped me so incredibly much. I had walked into her office that first day a completely different person than I was when we were packing up to move to Arizona a year later. I believe we were the right people to have the right experience together at the right time. I have been to a few other acupuncturists since then and have been sorely disappointed, didn't really even bother going back, actually. Once you have had the best its hard to settle for less. God guided me to this amazing woman at the distinct time in my life when I NEEDED her touch, her healing hands. I will forever be grateful to you, Brielle Kelly! You helped me recover in ways I never even knew were possible. Now either you need to clone yourself or get your butt out to Arizona because I miss you and could still really use you! 

Thanks for joining,
Leah   

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I Hate Tear-Jerkers

Last night my husband and I settled down, after a long day of pain and complaining on my end, to watch something on our streaming Blu-ray player. We were choosing between Arrested Development and Disney Pixar's Up. I figured I was up for a lighthearted childrens movie over an irony-dripping adult comedy and agreed to the cartoon. Well within 15 minutes I knew we had made the wrong choice. I won't ruin it for those that have not seen it but it hit entirely too close to home. Let's just say at the end of last July I survived a medical crisis that nearly killed me. My husband and I are both still a little raw about the whole thing and need no reminder of how painful it was, or how close to the edge I really came. As the story unfolded before us I stared at my TV screen in abject emotional horror at what was happening in front of me. I looked over and my husband was stone-faced. We did not say one word to each other the entire movie and when it ended the silence between us was pregnant with unspoken feelings. We agreed it was good, and sad. I immediately told him I did not want to talk about it, my default reaction to anything that makes me feel, and I knew where he was going... Then I quickly redacted and told him if he needed to talk we could, realizing how unfair my sanctioned silence was over something that affected us both so deeply.

I believe all he did was open his mouth and I started wailing from some visceral place deep inside. It was body-shaking, suffocating sobs and the pain in my heart was stabbing. The thought of my husband all alone with 2 dogs, without me here to round out the life we have made together, was more than I could possibly bear. The movie reel in my head played a sad and lonely reality for my darling husband without me in his life to make it crazy. I cried and cried like a baby that has lost its candy. Oh I was so mad! This was why I did not want to talk about it, why I did not want to feel. What is deep inside is so injured, so raw, and I am in no way close to being able to deal with it. My self-imposed compartmentalization may work for me but does not work for my husband and the right to his own feelings has been a topic of discussion before. 

See I don't need a tear-jerker to cry. If I want to cry all I have to do is think about my life, what I have given up, what I have lost, the pure pain I have lived in for years and years. I certainly don't need a reminder of what possibilities lie close at hand. I choose to focus on the good side of my existence, what I have to offer the world, what I have been blessed with. It is the only way I can keep going each day, get myself out of bed in the morning. I prefer the fluffy, the pretty, the rainbows and unicorns of life. I prefer to be grateful and cheerful and happy, as much as I can be. I have felt enough pain in my mere 34 years and don't want to feel anymore! I will certainly not go seek it out, for crying out loud! So I was pissed, I had been duped. My heart was forced to feel feelings it was not ready for, and it hurt. I am over it now, for life just goes on, but I can promise you I won't be renting Marley & Me anytime soon. Someone told me how it ends.

Thanks for joining,

Leah

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The Land Of Pretty

Once upon a time I was deliciously high-maintenance. I spent lots of money to keep up the appearance of an attractive woman. The $200 highlights, pedicure and acrylic nail fill every 2 weeks, monthly eyebrow and Brazilian waxing, tanning salon trips topped with self-tan cream galore. Its a good thing I worked in prestige cosmetics and was given more than I could possibly use or I would have squandered the farm on face creams and makeup as well! I spent plenty of time in the salon. The beauty parlor is a phenomena in and of itself. It is not only a place to leave looking better than when you came in, but is a place to unwind, relax, and know that you are doing something decadent and purely for yourself. It is a symbol of bonding female sensibilities. It is (or was before life could be conducted on a cell phone) a place to let your tensions melt away as your manipulated fingers were filed and nails formed or hot wax slathered onto your skin and hair painfully ripped from your body. Its a necessarily luxurious break from the demands we as women endure, be it from significant others, children, work or the myriad of other expectations that fill our plates. Since becoming ill the beauty parlor has become less and less of a presence until it finally fell away almost entirely. I still get my hair cut 2x a year, big whoopee do.

My best friend, feeling sorry for pathetic little 'ole me, gave me the awesome Christmas gift of a mani/pedi! It had been so long... So I prettied myself up and used GPS for the first time (it rocks!) to navigate my way to the hand and foot spa where she had a gift certificate waiting for me. I entered the long-forgotten environment of the salon and waited to be called. While waiting I observed the other women, some in their business suits or medical scrubs, a few mom-daughter duo's, a sprinkling of high-school girls, and reflected back to a time when life at the salon was a standing appointment. It was hard to break through the pain and years and put myself back there, for before the pain and fatigue life was normal. I did not know it then, and laugh at what sweetly innocent me deemed "problems". I did not know I was carrying on a life I would become unable to live because of an illness I got at the age of 28. The irony of the lessons I have learned and person I have become because of Fibromyalgia was not lost on me, and it was a nice reminder of how carefree life once was. I  sure enjoyed the pampering and left with sparkling toes and shiny finger nails. Besides not having to break my back self-pedicuring I enjoyed the experience of it all, enjoyed remembering and putting the beauty parlor in proper perspective of my life. I have put that part of me away for now, but am a do-it-yourself girl dreaming of the day I get to become salon dependent once again.

Thanks for joining,
Leah

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Grumpy Grumpy Grouch Grouch

I pushed "publish" on my cheerful and upbeat blog yesterday, bragging about how I can just ignore Fibro and have a fun week of "stay-cation" with my husband, and promptly burst into tears. I was in so much pain. I was a bloody dark Amethyst in mood. I was so angry that I can't do simple things like blog at the coffee shop for hours on end sitting on their bloody uncomfortable chairs and suffer no consequences. I knew it was coming, for I could not conduct a conversation with my friend on the phone I was in such a fog, but I wanted so badly to deny it! I felt guilt, of course, for infringing on our fun time and ruining his vacation since I already feel I have ruined his life. I was a radiating ball of negativity and sorrow. Came home, took some meds, got comfy on the sofa and relaxed all that tension a bit. But I knew today was gonna be a "flare pay-day" and even the thought of that pissed me off!

Of course when I woke up this morning I was foggy and already hurt, and Fibro does not usually hit me until I get out of bed. I wondered how well the full impact of a flare was going to go over with my husband. I went to get the mail and take the dogs out and on our way back I tripped and fell, and I mean fell hard! Luckily no one was around except for two unruly puppies that used the opportunity of my distraction to act up and run out into the parking lot! I gathered my scattered mail, pathetic self and bratty dogs and hobbled home, shameful and angry. My husband quickly turned negative and rude in reaction to my whiny and angry outbursts surrounding the whole incident, telling me I was to volatile and up and down. At this point I watched the impact of Fibro on a relationship and gained some incredible insight. The significant's in our lives don't want to deal with it. They cannot fix it, don't have it and often we do not allow them to have emotions or feelings about it. We are so busy trying to be believed, taken seriously and understood that we don't let them express how this impacts their life.

Spouses, committed partners, close family and die-hard friends go through this journey with us, yet we feel so alone and isolated. I think they do too. I think we have become so desperate in our plea to be heard that we have stopped listening to those closest to us. A while back I was discussing this topic with my husband. He was telling me how strong I am and how much he admires my fight. I told him he was too, but he responded I was the strong one, for I was the one with the illness. I proclaimed this happened to him too! He did not see it, could not grasp my point of view. I used my little brother as an example. I told him my parents don't have Autism, but by having an Autistic child, Autism happened to them too. He got it, he understood. So when he comes back from lunch with my uncle I am going to throw my arms around him and thank him for being here. He may not always act or react the way I want him to but this is his life as well, and he also deserves to be heard.

Thanks for joining,

Leah

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Its So Easy To Be A Bitch

My husband and I lead very different lives. He is up at 4am every morning, dragging himself off to go put in long and grueling white-collar hours at his downtown finance firm. I...well you all know me... I am lucky to be up before 10am these days and half the time I don't even leave the house since I work from home. My mornings consist of a Yorkie & Porkie walk, yoga, breakfast and the time-suck aka the computer. Before I know it 3pm is fast approaching and honey dear is almost on his way home. Of course I have accomplished only a fraction of what needs to be done, but I quickly throw myself together in high gear, attempting to give my husband the illusion of a productive wife who can get her fanny to the post office before 5pm! Sure I keep pressing myself for more organization, more accomplishments, sticking to a schedule or routine that has me primped and prettied up every day just to sit around the house looking fabulous for no reason, like some soap opera star. I have yet to master that art...

But I am in the middle of trying to manage the merging of two illnesses, strokes and Fibromyalgia, and am working quite hard to obtain balance and productivity with my day. I am also in pain and tired and overwhelmed with all the details of The Crusade we are waging against Fibromyalgia ignorance. Such a combination can make this girl over here quite bitchy! I have a very controlled little environment I exist in 5 days a week and when my schedule gets thrown off it impacts my health. Not exercising, eating bad, all those other choices tired and stressed people make have an adverse affect on our health. So when my husband started his "stay-cation" I felt myself getting bent out of shape at the disruptions to my routine.

I had to sit down and have a serious talk with myself, for the attitude I present this next week will make or break this week off of work for my husband. It can either be a restful and rejuvenating sojourn from routine or a miserable and draining experience for him. After much deliberation and consideration of action vs. consequence I went with the "can't beat 'em, join 'em" school of thought. I declared myself on semi-"stay-cation" too! I released my expectations of going to bed early, walking and stretching every day, eating healthy self-cooked meals at home and obsessing over all those things that I usually demand from myself. I decided to take a big swig of "LET IT GO" and just enjoy the precious time with my husband. Guess what? We are on day 2 and having a blast! I feel like we are kids playing house, am reminded of the fun we had together way way back in college when life was carefree and simple. Yes, my body hurts, I am not getting the exercise I am used to and the house is messy, but I can get to all that next week. This week I am busy doing something I rarely get to do, enjoying spending luxurious amounts of time with my best friend, my husband.

Thanks for joining,

Leah

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An Investment In The Family

We moved to Arizona from San Francisco in the spring of '08. I took a part-time sales job with the same cosmetics company I had been with for the previous 3 years, just with a different retailer. It was sure an adjustment acclimating to the Arizona clientele! After dealing with the barrage of tourists, mix of ethnicities and big city mentality for 6 years the slow and mellow pace of a retired desert resort town was a very pleasant change, if a bit under-stimulating. But the retail devil soon reared its ugly head and after almost a year of completely obnoxious schedule manipulations I started to get "sick" again. I felt Chronic Fatigue Syndrome sneaking up on me as my ability to manage my life was taken away. My manager interpreted 3 days a week as 6 days in a row and then there was a round of lay-offs, resulting in me being the person they scheduled to work more when needed. I panicked. I absolutely COULD NOT go through what I had already gone through to get better from that very nasty virus which infected my central nervous system. I started feeling the "afternoon flu", sore throat and feverish, achy and confused, that was so familiar and I had to stop the virus from sneaking its way back on top of my immune system! My husband became very worried, for he too had been through the rounds of cancer-causing carcinogenics, pancreas attacks and misery HHV-6 had inflicted, right there beside me.

We made a decision, one I never in a million years thought I would make, and I quit that job, regular employment becoming a thing of the past. For the first time since I was 15 years old, save for a few brief years in college, I was technically unemployed. I was quickly snatched up to work directly for the cosmetics line as a Regional Makeup Artist on a freelance basis. It was a good fit and I had much more control over my schedule, but there was no guarantee of hours. I had to take what was offered and could not be picky if I wanted to bring in the money I still needed to generate to pay our bills.  My husband could work the overtime that was offered to him, making far more hourly than I could, but not without adequate support at home. At this point in our 10 year relationship I knitted my house-wife cap and put it on. I stopped expecting ANY assistance around the house and assumed all responsibility for cooking, cleaning, laundry, bills, etc., all the stuff that makes life go round. I started packing his lunch for him every night and making sure dinner was on the table when he came home from work.

But this decision represented something much bigger for us. It represented a choice to put our family and my health first. A choice that would have saved us endless amounts of heartache, turmoil and devastation if we had the fortitude and experience to make it when I first got sick in 2005. No, on paper we had not made the "smart" choice. We were not being prudent, putting our tenuous finances first. It was not a decision we could "afford" to make, yet in a different way entirely it was a decision we could not afford to not make. This was a huge leap of living in faith, not fear, and the freelance hours came in from the makeup line, my husband powered out the most overtime in the company that year and somehow by the grace of God our bills were paid! With the strokes came about a whole new set of challenges and decisions to be made, but this original choice to put ourselves first and refuse to play victim to illness, employer or credit card company was the start of an entirely different way of living. A mentality that has led us to where we are today, sitting at the coffee shop with me blogging and Crusading and my husband studying his acting, both of us believing in a bright and shiny future.

Thanks for joining,

Leah

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The Road To Change

Man 'o man are we messed up. I am a Richter scale of hormonal emotions over here and my husband is about at his breaking point. Every single action is a negative or bad thing, and I am constantly forcing myself to keep my mouth SHUT so I don't wreak mayhem on my marriage. Getting off of Prednisone is akin to having severe PMS for weeks on end; maddening! When life gets like this, every action wrong, every thought negative, no enjoyment derived from anything, it is time for a reevaluation. What is important in life has escaped us as the toil and drudgery of my constant illnesses and my husbands severe unhappiness with his job consume our reality. It took a new friend reading old posts and leaving endearing comments on them to reminded me of my state of mind last spring, when life was on the UP. Before I had 2 strokes and nearly died. Before I met any of you. Mostly a year later we are still working our asses off, still on that same hamster wheel to nowhere, or so it seams, it feels. Our hopes, dreams and ambitions have changed, quite drastically I might add, but the immediacy of our reality has not much improved.

The truth of the matter is my strokes set us back a whole bunch. Last spring we were two people a year away from ending financial servitude and my health was improving markedly. We decided the life we were working so hard for was not the life we wanted and did a 180 on our plans and goals for the future. My husband planned to leave finance eventually and pursue a career as an actor in Hollywood. My plan was to obtain my Masters Degree and teach and write. He signed up for acting class and has thoroughly enjoyed melding his natural talent with the learned skill he is obtaining. I was trying to finagle financial aid to go back to school. But the strokes, followed by attack of the Prednisione, put all of that on hold for me. Now I find myself the head brigade of The Fibromyalgia Crusae and am loving it! But it is a lot of work and I am overwhelmed. My Fibromyalgia is not nearly as behaved as she was before. My husband is still working at that same job, and we have not ended our financial servitude. So in one way we are better off, by leaps and bounds, but if you measure it by the standards we experience today, it is darn near more of the same.

Thanks for joining,

Leah

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I Need To Sleep

My dear friends, your fearless leader is falling apart over here! I am sleeping 12 hours a night and could sleep more. This morning when my husband called because he had not heard from me by 11am he woke me up from a deep dream state. One where I was trying to protect some mouse/dog looking thing that talked and was going to become the Queen of England. I am sure a dream interpreter would have a field day with that one! Stepping down to an almost non-existent dose of Prednisone, this flu/sick thing I have been fending off and my need for post-stroke recovery sleep is hitting me all at once and I am simply exhausted! Not Chronic Fatigue Syndrome exhausted, for that was a monster 10x worse than this, but it is extremely difficult for me to accomplish anything in a day and I feel my life is crumbling down around me! I have not cooked all week and have wrecked our finances with cheap take-out meals every night. My dear husband has had to find somewhere to buy his lunch while at work, and as the entire civilized world knows I have been out of coffee all week!

I remember a time when it was so much worse than this. After "mystery illness" blossomed and budded for about 6 months I was progressively getting sicker. My sleep became a noticeable problem, for I would sleep 10 hours a night and wake up simply exhausted. It was not until a year later when I received treatment from The Fibromyalgia and Fatigue Center that it began to make sense. I learned a crucial sleep disorder was a pre-cursor symptom for CFS and Fibro. I was started on the correct supplements and medications and when I had an actual dream I realized it had been years since that had happened. During this time I literally sat on my sofa zoning out on TV (too fogged to read a book) and watched the dust, dirt, laundry and dishes pile up around me. I could not do anything about it! Not one darn thing! It was one of the more frustrating experiences of my life. For just emptying the dishwasher was an afternoon event rivaling a round in the ring fighting a boxing match!

Intensive sleep is one of the components that got me out of dire straits with CFS and Fibromyalgia. Years of 9-10 solid hours with wild dreams every night.  Now the strokes are requiring it too. My body is capable of much more than when I was infected with CFS, but I am still not meeting my own expectations. And he won't admit it but it is irritating my husband as well. But I have to find a way to coexist with this, to make my life and sleep requirements work together and not drive me crazy. I will, for I have before. This is just part of learning how to manage a life and a chroic illness at the same time. Sleep tight my Fibro friends. Remember to be gentle with yourself, and I promise I will do the same with me.

Thanks for joining,

Leah

Just To Reiterate...

When I first went "live" with this blog in August I was just plain scared. I had spent the previous 5 months pouring my heart and soul onto the pages of this computer screen, unpublished and unadvertised, and after my strokes determined I was ready to take the (gulp!) leap to publicity. My Fibromyalgia journey was too important to keep to myself, for I know many who exist in misery for their entire lives and I had somehow navigated myself to a managed state and was actually getting my life back! What I had written was deep, personal, a mix of the past and present impact Fibromyalgia had on my life. So I took the jump, promoted this blog and was shocked and amazed at the response it garnered. People wanted to read it! And they kept coming back for more! Pretty soon my Facebook page became a "support group" of sorts where people would come to gain strength, vent and complain yet ultimately find a laugh or two to cheer them up on their way out the door, back to living life with the frustrations of Fibromyalgia. Then that got so big an actual support site, The Fibromyalgia Fun House, was created. And the hits kept coming to the blog, and more and more people found solace and strength and a community to be a part of that completely understands how miserable and challenging life with Fibro truly is. Then The Fibromyalgia Crusade was birthed, for the outlandish treatment Fibro patients receive from friends, family, doctors and the community at large must be stopped. With the power of each other behind us, we are rising up and saying ENOUGH! We are finding the strength to force the unbelievers to stop and take notice that Fibromyalgia is indeed real, real painful, and a son-of-a-bitch to live with. We are headed great places, folks, and I am ecstatic to see how far we will take this awareness campaign!

There are a few basic precepts that are the cornerstone of our success. These few ideals are what make The Fibromyalgia Crusade unique and are ultimately responsible for its necessity and growth. Seeing as Fibromyalgia does not discriminate, neither do we. We accept everyone, regardless of level of disability, chosen course of treatment or co-existing medical conditions (as long as your are nice to us). We respect that not only does this illness affect everyone differently, but there are many different stages to it as well. We DO NOT tell others what to do or judge them for their choices, instead we offer information from our own personal experience. Some find inspiration, hope or ideas from this anecdotal input, others do not. We encourage each other and remind each other that the expectations from the outside world are often too big for us to assume. We remind one other it is okay to take it easy and not push and expect perfection or amazing feats out of ourselves. We truly get it when someone is having a hard day or excessively long flare and are ready to explode. We offer true, compassionate and kind non-judgmental support. That is the spirit, heart and soul of The Fibromyalgia Crusade and all the other entities that comprise this awareness campaign. Just knowing there is a community standing behind you is making it easier for some to lay down their shame and proclaim the truth of their life. It has for me. I find my mouth flapping everywhere we go and have to carry awareness bands and information cards with me at all times, I am generating such passion in people that don't even have Fibro, or know anyone that does, wanting to show their support!

But I need to insert a gentle reminder here about the point of view my blog is written from. I was a very sick woman who was disabled and could not leave my house for months. I spent years extremely depressed and angry. When I did return to work I lived on pain pills to get through and I was miserable. I have tried MANY treatments, conventional and alternative, some which have worked and others that have not. Through it all I have progressed to what I call "managed" Fibromyalgia and slowly started re-building my life. Then 2 strokes knocked me on my ass in July, the treatment was steroids, and I became a bit of a loon. I am now returning to normal and am bewildered and amazed at the frenzy my little blog has whipped up! And overjoyed, for I have found the purpose of my life. So please keep in mind when I blog it is about my personal experiences, all I know. I am not a doctor nor an expert. My accomplishments/successes/methods of treatment are not an expectation for anyone else, simply what I have gone through. I am in a positive place in my Fibro journey, and this is certainly NOT the attitude I would have presented when I was in the thick of my misery. I try to inspire, give others hope, but place no demands or expectations on how each person chooses to treat their Fibromyalgia, and expect and enjoy that same attitude out of my friends, my readers, you.

Thanks for joining,

Leah

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Yoga Or Narcotics

I was talking to my father on the phone last week, having just finished my morning walk with the pups and about to settle down to watch General Hospital while doing my daily yoga routine. I mused to him that regular yoga practice was the difference between taking narcotics or not for my Fibromyalgia pain. He was more than a little shocked and surprised, for to him narcotics are a BIG DEAL. For most that have never lived with chronic pain, narcotics are a big deal. For those that have or do live with it, well, we do what we need to in order to survive. He was happy to hear I have a way to manage my pain without the addictive misery of pain pills, but the thought that yoga could have that much of an impact on my pain was a new phenomena for him. Then the new year came and it got really cold and I slacked off, eating lots of good (not for you) food and drinking alcohol and not walking the pups or even thinking about doing yoga all weekend. Each day my pain would increase just ever so much more. I started creaking around, stiff as a board and constricted, popping Flexeril and Tramadol as a way to combat the pain. By the time Monday morning rolled around I could barely get out of bed, and by Tuesday afternoon I was just plain pissed off! I could barely move and was sick of pill popping and the blaring reality of the truth that proclamation I made to my father the week before manifested itself in living form.

Now don't get me wrong...there were many years when I had to use both to get through the day. When I was working retail the pain was so unreal, Percocet was how I merged my illness with my job. Yoga and walking were helpful, but not the saving grace they are today. My Fibromyalgia was not nearly as well managed and San Francisco is not a one income city, so I did what I had to do to pay my bills and survive. It sucked but sometimes being an adult does, and we do what is necessary to get through. Then we moved to sunny and warm (or hot as hell) Arizona and that in your bones pain that cold induces went away. I was still hurting but not to the point that I wanted to kill everyone and then myself. It became a bit more bearable. But I still relied on pain meds to get through my retail job. Then my doctor upped my Lyrica to 450mg and the pain went away! I turned into the Michelin Man and eventually had to stop Lyrica but have never had to go back on narcotics. Neurontin, strict lifestyle management and Flexeril keep my life livable. Oh yeah, and I quit that darn retail job!

But if I have ever doubted the necessity of yoga for the management of my Fibromyalgia pain, these last few days have driven the point home. Last night I forced my stiff and aching, throbbing and burning body to stretch. I pushed through my yoga routine that I usually do with something close to ease huffing and puffing and barely able to hold myself up. I was constricted and inflamed and confused as to why it was so hard for me to do... Then I woke up this morning and felt much better! Something close to normal. I walked my pups and did the whole yoga sequence again and I am feeling good today. After I had the two strokes in July and was put on high doses of Prednisone I felt NO PAIN. I was a psychotic raving lunatic, but in pain I was not! I exercised every day with enthusiasm and passion. It was a non-negotiable in my life and I enjoyed that particular side-effect from the steroid. But as my dosage is now down to single digits and I am in at least just a little pain at all times, it is hard to commit the dedication to exercising I had before. When I hurt I want to curl up in a ball and just be. The problem is, just being does not make living life with Fibro any easier for me. In fact, it makes it harder. I come from the use it or lose it school of thought. So if it does not conflict with any of your other medical conditions and you are interested in at least learning about yoga, there is a terrific book out called Yoga For Fibromyalgia that starts you out very slow and gentle and you can gradually increase intensity as your body adapts. No, it is not for everyone. But for this girl right here, I would be a quivering jello-mould mess of a Fibrate without it.

Thanks for joining,

Leah

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I Am Taking My Life Back

Today finds me on the other side of my post-holiday, post-sick flare and I am amazed at how much has gotten away from me! I have been indulging Fibromyalgia, buying my own excuses that keep me unproductive and lazy. Making mental agreements with myself that justify this behavior. Whining and complaining in my head that I hurt so therefore I could not possibly be expected to keep up a routine.  Bargaining with myself to excuse my lackadaisical drive and refusal to exercise discipline in doing all the things that are required to make my life successful. Today it all came swirling down around me and I have jumped on top of it and am screaming ENOUGH! Enough with the excuses, the mental crutch I have allowed my physical well being to become. Enough handing over my life, my dreams, my goals and aspirations. Yeah I may still hurt and feel like crap a fair amount of the time but I don't care...I am taking my life back!

I am inherently rebellious and a night owl. These two factors are creating quite a conflict with the smooth, successful and on the ball image my mind wants me to become. I stay up late, sleep in late, have not been doing yoga and because of that it now hurts too much to walk the dogs. I am back to relying on pills to manage my pain instead of my lifestyle. I am a big fleshy ball of flab and jiggle yet still stuffing my face like I am entitled, all because I don't feel well. I am spiraling down the rabbit hole of regression and indulgence. I have been here before and have no desire to go back. So in order to not fall any deeper I am sticking out my arms and legs, catching them on the sides of this hole I am being sucked down, and halting this before I slide any deeper. I am stronger than Fibromyalgia, I am stronger than pain! I am on the cusp of having a very successful and productive life where I make a difference in the world and am not going to allow excuses, bad habits or whoa is me to halt it any longer. I have been sitting here for the last few weeks feeling disorganized, unproductive and lost. Not knowing where to go next, how to proceed. 

Well I am laying that down right now and re-claiming the goodness my life is meant to become! But without my participation, my commitment and hard work, it is never going to happen. So instead of buying my own reasoning that worms me out of the routine I need to be productive, I am setting certain parameters for my day that are non-negotiable. A collective list of actions that I need to achieve in order to run my life, be a good wife and puppy-mommy and march this Crusade into existence. I know what they are, I know what is required of me, and I am up for the challenge. It is just going to take a lot more self-discipline than I have been displaying these last few weeks! Finding the balance of motivation and self-forgiveness is a never-ending journey, especially for the chronically ill. The middle ground of compassion and discipline that fosters health and healing with progress and productivity is where I have set my sights. I am not ignoring Fibromyalgia, but I am not going to indulge her either. For Fibromyalgia is something I have, it is not who I am.

Thanks for joining,

Leah

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Being Normal Sick

I think getting sick is a FABULOUS way to usher in the new year. Mandatory, in fact! There is nothing to a Fibrate like a good old fashioned bout with the flu, or bronchitis, pneumonia, strep, even just a simple old fashioned cold will do the trick. See, adding another layer of illness to our already complex array of maladies is just another way to stir the pot of misery, mix it up a little, give us a bit of variety. We tend to get so bored with the constant and pervasive body pain, fatigue, migraines, fog-brain, insomnia and other issues Fibromyalgia so generously and faithfully hands us on a daily basis. What's so bad about a little fever thrown in, some chills and aches, coughing up a lung or two, some vomiting or diarrhea? I mean really, folks, can you expect Fibro symptoms only to keep you occupied? It really is necessary to get "normal sick" to remember how much worse it could all be, right? Especially when we are embarking on a new year, a fresh start, a new resolve so determined to kick Fibro's ass and get control back in our lives! Silly silly we, it is so important to get this additional new year illness to remind us that our health problems ain't goin' anywhere and neither are we...

I feel that as much as I try, beat my head against the wall making lists and promises and checklists and imagining routines that are both nurturing and actualize my dreams simultaneously, my efforts are thwarted. Partially by me, for I am eternally trying to turn myself into what I am not. I am not extremely organized, OCD, anal retentive, on the ball...whatever expression you want to use. I like the idea of sticking to a schedule but am too much of a rebel to actually find solace in it. I am NOT the same woman every day. Some days I wake up and feel great, ready to conquer the world. Most days I wake up and want to go back to sleep. For being a person of poor health comes with its own dictations and demands, and then there is the illness itself! The real reason I cannot take charge of my life and just do it, as the Nike ads I grew up with so simply stated. Make up your mind and do it. I remember those days fondly. Days where I would get an idea in my head and formulate a plan and execute it and actually change my life with not much more than hard work and determination.

But it is so hard to not feel the victim when one is chronically ill! It is so hard to stop asking "Why me?" and take responsibility for the quality of life you lead. Either you over-ride the impulses to ignore change or forgive yourself for not being able to over-ride the impulses to ignore change. But this constant state of flogging oneself for not embracing perfection, being stronger than the pain, pushing through the illness, that is what really gets us down. Is self-acceptance the cornerstone of managing Fibromyalgia? Is living sick an art, a skill that we must teach ourselves if we wish to co-exist with anyone healthy on this planet? I don't know, can only surmise, but do know that when I am nice to me, don't push myself or get stressed out about my myriad of imperfections, I feel a whole lot better than when I am not.

Thanks for joining,

Leah

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New Years Resolutions

Are we a bit disgruntled, my fellow-Fibro warriors? Was this last year as hard or harder than we expected? Are we looking at this marvelous start date of 1/1/11 to cleanse us of our frustrations and roadblocks and throw a whole new dose of determination on top of our problems? I know there is a big part of me that wants to. But I have learned enough through the years that I can be my own worst enemy when I set my expectation too high, thinking I can control certain parameters that are unrealistic. For a fair amount of what I need to go away is my illness and the limitations it imposes on my life! But it is not just something I can will away, or decide is better and ignore. I have tried that and only made myself sicker! Fibromyalgia, unfortunately, is stronger than determination. But if we seek improvement, not perfection from ourselves, we will not be let down. For it is easy to make a few small choices throughout the course of the day that add up to some pretty monumental change for the better when looked at over the scope of a week or month. A few better time-management choices, food, exercise or sleep decisions, emotional investments that will be rewarding, not painfully punishing. Ever hear the phrase "The definition of insanity is doing the same thing and expecting a different result?" Well that is what we are trying to avoid this year!

So take a deep cleansing New Years breath. Rejoice in being alive for yet another one and count yourself some blessings, no matter how small or insignificant they may seem! The power of positive thinking is strong, but the power of negative thinking is too. You choose which one you are going to exist in. We are marching, hand in hand, towards global Fibromyalgia awareness as we struggle to manage our own symptoms, loved ones, financial hardships and emotional battles. We are part of a community that gives us strength, laughter, insight, advice, friendship and true compassion and understanding. For many of us this is a new phenomenon. For others we are an additional support network. But no matter where you land on the scale, The Fibromyalgia Crusade is in full swing and pretty much unstoppable at this juncture in the road.

Let us strive for grace and style, composure and class, as we venture into a new year with new expectations and determinations. Let's build up our self-confidence and balance our right to be sick and take care of ourselves with our ability to love and give to those in our life we have committed to. Let us seek improvement over perfection and remind ourselves that sometimes just the simple act of getting up in the morning is a feat in and of itself!

Thanks for joining,

Leah

P.S. I am trying to improve the visibility of this blog. If you are a fan and on Facebook please click on "Blog" from The Fibromyalgia Fun House page and "Follow" Chronicles Of Fibromyalgia on Networked Blogs. It will improve our search engine rankings and get the word out faster! Thanks friends!