Tuesday, November 30, 2010

The Master Cleanser

WARNING: I am not advocating this practice, simply telling the story of my experience!

Some of you may have heard of The Master Cleanser, or "Lemonade Diet" as it is also known. Plenty of celebrities have done it, Beyonce and Denzel Washington to name a few. It is an old-school, hard-core, un-scientific extreme cleanse where you eat no food at all and drink a strange concoction of lemon juice, maple syrup & cayenne pepper multiple times a day from 3-40 days depending on how long you can take it or how much you want to cleanse. Believe me, it tastes as good as it sounds! I have done The Master Cleanser two times. Once for 7 days and another for 12. The first time was brutal. Every second of every hour of every day I was craving some gooey delicious food or another. Pizza, cheeseburgers, steak, buttermilk bars...you name it and I was dying for it! My husband did it with me and there was no food in the house, no cooking, just squeezing a lot of lemons and making sure he had enough "juice" to get through his 12 hour work days. There are other components to the cleanse as well. The author advocates a "salt water flush" daily and laxative tea nightly. The point is to get all the crap (pun intended) that is stuck inside you out of your system and allow your organs to cleanse, rest, rejuvenate and repair. I have taken so many prescriptions during my battle with Chronic Fatigue Syndrome and Fibromyalgia and I wanted to eliminate the residuals from my system. I did not take any of my regular supplements during the cleanse but of course continued my prescription medications. I had a strange pain journey while on this cleanse. An area of particular pain would magnify and then go away completely. This happened with many different spots on my body at different times. My upper back, shoulder, lower back, right arm, hips. It was interesting and strange but I sure did enjoy less pain! My husband caved first, lasting 5 days. Then I had to sit and watch him stuff a burrito down his throat while I drank "juice" and salt water. It sucked. Two days later I was boiling cauliflower and mashing it up, re-introducing food to my digestive system. I have "abstained" from food plenty of times due to multiple Pancreatitis attacks and am quite familiar with the practice of breaking a "fast" in a slow and gentle way so I skipped the orange juice day the author recommends (too much blood sugar crashing for me).

The second time I did it solo, which meant I had to cook breakfast, lunch and dinner for my husband while completely abstaining from food. I figured it would be torture yet discovered I had NO problem with it! I actually bought the book and read the entire thing, not just gleaning my information from the internet this time, and made a few modifications. The salt water flush was awful and I did not feel it benefited me so I eliminated it. I also doubled the amount of "juice" I drank and found my hunger and cravings were much more satiated. I believe I was consuming a calorie level that took me out of "starvation" mode and that is why I felt much better. I cooked wonderful gorgeous delicious meals for my husband with no problem! I sat down at the dinner table with him to chat while he ate and I drank. I also drank mint tea almost constantly to "purify" my system. And some pretty wonderful stuff happened this time! Within a few days of starting the cleanse Fibromyalgia pain went away almost completely. The stiffness and soreness that I live with daily disappeared. I also lost all puffiness, especially under my eyes. I am particularly sensitive about my under-eye puffiness, feeling it ages me terribly. My skin took on a healthy glow and my clothes became looser and I could do yoga with increased flexibility and ease. I felt pretty wonderful! But around the 11th day (I was shooting for 14) I developed a reaction that caused me concern. I was not sure if it was my body detoxing all the candida I have dealt with for years and years or if it was from all the maple syrup I had been consuming. Not having a doctor or holistic health practitioner to confer with I stopped the cleanse two days short of my goal. But 12 days is my longest fast to date and I was pretty darn proud of myself!

Now I did lose weight while on this "cleanse" but that is the absolutely wrong reason to do it! It is not a diet. I quickly gained it back once I begin eating again. It did give me a chance to jump-start or re-set my system and if I stuck to consuming healthy, unprocessed, unrefined foods upon completion I maintained many of the benefits of the cleanse. My social life was eliminated while on this cleanse. Working was hard enough but I needed constant access to a bathroom and it was just too hard to be in a restaurant or at a friends house with all sorts of "food" focused activities going on. I anticipate another round with The Master Cleanser after I am done with Prednisone. I will clear it with my Neurologist, per my husband's insistence, but am looking forward to flushing my system of all the residual affects of this stroke-preventing drug as well as all the narcotics and radiation from my hospital stay. All in all I am a fan, but would never recommend it to anyone who is extremely ill. I wanted to do it for years before I actually broke down and did it but was too sick, still suffering from all the viral issues and infections and such. The author claims it will cure what ales ya', but it just did not feel right to me. However, once I was able to get so many of the infections under control and my immune system built up I believe The Master Cleanser is one of many important components in navigating my way to "managed".

Thanks for joining,

Monday, November 29, 2010

I Must Stop Being So Mad At Me

What a weekend! I must be a glutton for punishment because I am glad it is Monday and I can get back to work, back to my routine, back to some discipline! I have control of my activities and no one to answer to (except myself) and I can resume exercising and crusading and cooking and cleaning and bathing puppies, all those oh-so-exciting things my life consists of. Yesterday I felt like my ribs were poking my back in all sorts of awful ways and I just hurt. That all-over body hurt known to an elite group as Fibromyalgia. I pretty much did the exact opposite of what is necessary to manage my Fibro over the Thanksgiving weekend. I ate lots of fattening and processed and sugary foods and did not exercise and relied on medication to keep the pain at bay. Problem is I don't really take anything strong enough to do the job good old fashioned lifestyle usually takes care of. If there was any doubt in my mind that my Fibromyalgia is managed by the 5 pointed star of health (diet, sleep, exercise, stress management & hormonal balance) as much as it is by Neurontin, it has been eradicated from my mind! I have a massive responsibility to keep my symptoms in check with my choices. Oh it all goes back to discipline...

It has been 3 months since I had my strokes, was put on high-dose Prednisone and sent home to figure out how to live life. It has been 3 months since I surrendered to my God and allowed myself to open up, stop being so private, shy, protective of myself. I quit my job, went public with my blog and started spreading the word around various Fibromyalgia sites on Facebook to see if anyone was interested in reading it. It has been 3 months since I stopped trying to control my life and just let whatever goodness there was flow through me. Oh it has been a whirlwind! Prednisone in and of itself made me think I was going to come unhinged, but it gave me intense energy and drive and as I sit here today slowly weaning off it, Fibro pain and laziness returning, I am marveling at the storm that has been whipped up! Some big stuff has happened. The Fibromyalgia Fun House, The Fibromyalgia Crusade, The Chronicles Of Fibromyalgia, The Purple Pain Code, all pivotal components to a patient-united awareness campaign we have banded together to form. We stopped feeling like little dinghies floating out in the abyss of the large and vast ocean of aloneness. We recognized there were a whole lot of people just like us dealing with the exact same problems, symptoms, struggles, challenges, criticisms and frustrations. We are realizing if we do this together we will get a lot further than any solo effort will ever yield.

I see a change taking over. I see far fewer victims out there. I see people putting their foot down with the way they are treated by doctors, friends and family. I see proactive and strong spirits emerging and a support network of true and authentic compassion and understanding. I see an exchange of knowledge and information and ideas and I am so pleased! My cup runneth over... But I also see how hard we still are on ourselves, mad we have this ill-understood illness to contend with. Confused as to how to make life work while dealing with constant and pervasive traveling pain and symptoms that come and go as they please, no warning, no pattern. We are still plenty angry and taking it out on our emotions, mental balance and expectations of self. We are feeling betrayed by our bodies, imprisoned by our pain and abandoned by our idea of what life was supposed to be all about. I know my life has sure not turned out anywhere near the way I thought it would! I also know that until I was able to forgive myself for getting sick my symptoms kept me down. I have ventured a strange journey to this place I call "managed" and a crucial component was to let Leah off the hook for screwing up not only my life but everyone's around me as well. To accept my reality, focus my anger on the true enemy, FIBROMYALGIA, and just be darn nice to myself, because there were phases where I was the only one that was! The guilt still crushes me at times. The frustration overwhelms me. But by and large we are knitting together a network that allows us to be sick and defeated while at the same time pro-active and hopeful, with little sprinkles of laughter on top! Keep comin', my Fibro-warriors, and join The Crusade, for I promise you the difference we are making has started already...

Thanks for joining,

Saturday, November 27, 2010

The Cause For The Cause

I see a great many of you had some pretty awful emotional encounters this last week as we gathered with family and friends we have not seen in a while. More than a few were subject to off-putting remarks and rude, blatantly disrespectful behavior. It grieves my heart to see this and as unfair and inappropriate as it is, we have to arm ourselves so this does not keep happening to us! We have to have quick and effective responses at the ready and a thick skin their criticism and judgment cannot penetrate. I know it seems they should have compassion and understanding, it should not be our job to educate them about our condition and they most certainly should at the very least be nice, but unfortunately that is just not the way it is! We all learned a long time ago life is nowhere near fair and this is one of those blaring examples that remind us some people have mean and negative streaks and will take any opportunity to prey on the vulnerable in order to feel better about themselves.

One thing I have found in life is when people have a problem with you, it is actually THEIR problem, they have just found some creative way to manipulate it onto you! It is in getting a reaction they feel important or superior about themselves or garner some missing piece from their life. Keep that perspective in mind as you navigate through the mind-shift it will take for us, the Fibromyalgia patient body, to learn how to stop this outrageous behavior and take back control. As much as we try and avoid negativity sometimes it is simply not in our control. But we will not be left sitting there feeling emotionally trampled by mean Aunt Sally's rude comment about being lazy or Uncle Joe's drunk proclamation about being a junkie. I have been mulling this over for a few days now and think we should drop the name Fibromyalgia from the first few lines of our educational encounters.
"What is wrong with you?"
"I have a neurological condition that causes debilitating pain in my body and horrible fatigue."
"Oh you poor thing!"
"It is called Fibromyalgia."
"I have heard of that, its not a real illness..."
"Actually, according to the World Health Organization and Centers for Disease Control it is, you should educate yourself before passing judgment. It affects nearly 6% of the world population."
Catch my drift... Now that conversation can go any number of ways, but my point is we have to stand strong against ignorance and stand even stronger in our belief in ourselves and what we are fighting against. Our true enemy is the illness itself, but we cannot continue to allow others to emotionally abuse us. Just as we must stop seeking treatment from doctors that do not believe or treat us with respect, we must also not allow family or friends to get away with putting us down or dismissing our condition. This is not easy, a tough challenge I bring to you. I know how tired and painful and miserable life is with Fibromyalgia. I also know that half the battle is the emotional devastation derived from each attack on our sanity or credibility this illness inspires. But as far as I can see Fibromyalgia is just not going away, and as the lucky recipients of this complex and ill-understood condition we can leave things as they are or insist on respect, and then go about changing our behavior to demand it.

The purpose of The Fibromyalgia Crusade is different from the vast array of other Fibromyalgia organizations out there. We are not scientists, heading up new research. We are not doctors, revolutionizing a new standard of care. We are not government lobbyists or large associations with a board of directors intent on informing the masses on the latest studies or most current developments. We are not pushing a specific cause or claiming to know a cure. All of those groups are necessary, badly needed, but we fill a different niche. We are the patients. We are the ones that live with this day in and day out. We endure the physical attack on our bodies as our lives succumb to navigating a way through the limitations it imposes. We understand in a way no one else ever will what each of us is going through. And we are banding together to gain strength, support, ideas, understanding, help and yes, even a little bit of laughter from each other. We are also joining up to spread awareness and insist on a better quality of living for ourselves. We will not appeal to every Fibro patient out there, and some will dislike us for their own reasons, but we will not be deterred. We will exist in tandem with all the other groups and associations and networks out there because we are all badly needed! But if the frenzy we have whipped up in a little over 3 months is any indication, I get the distinct feeling it will not be long before we are quite a force to be reckoned with!

Thanks for joining,

Friday, November 26, 2010

Thanksgiving Is A Kind Of Anniversary For Me

Thanksgiving in 2004 consisted of watching my husband eat turkey dinner from the hospital cafeteria perched on his roll-away chair while I laid chained to my hospital bed by an IV, MPO. It was during my most severe Pancreatitis attack, the one that precipitated all these health problems I have been plagued with since. My celebration was a push-button of Dilauded that would zonk me out so as to dull the true pathetic-ness of my situation (and the unbearable pain of Pancreatitis). In 2005 we planned to spend the day with my college roommate and her new husband and then head into San Francisco to see Cirque du Soleil in the evening. I wanted to bring still-puppy Yorkie with us to their house, not wanting to leave him alone for 14 hours or whatever ridiculous amount of time we were planning to be gone. My friend had a cat. A giant indoor cat that Yorkie would chase around tirelessly trying to get her to play with him, bouncing up and down in front of her as if on hydraulics, barking. Well kitty was not having it and usually all he got was a swipe on the nose that would send him yelping and running. My husband did not want to bring Yorkie, feeling my friends husband did not like how he interacted with the cat. What ensued was a horrible fight and he won, so I proceed to be the biggest bitch I could possibly be to him for the rest of the day. The show was amazing but everything else pretty much sucked because of my attitude. 2006 was a beautiful and crisp day of radiant sunshine we spent at the Cliff House, a hoity-toity foodie establishment steeped rich with San Francisco history. Our window table overlooked the magnificent Pacific ocean, waves crashing into the rocks below and the sunset, oh my the sunset! A blazing inferno ball of orange slowly dipping into the vast ocean as the sky turned from pale blue into every shade of orange, gliding into a rich purple darkness. It was a wonderful day, one we still look back on with fond recollection. 2007 was spent at my Father-in-law's and by 2008 we had moved to Arizona and spent the day at my Mom's. Last year we went to my Aunt's house and my Cousin, an over-zealous born-again minister, spent the duration of the meal "challenging" us for being Catholic. I could barely taste my food and my husband vowed to never spend another second in his presence. It was not very pleasant and took me MONTHS to get over.

So yesterday was spent at a different Aunts house, and it was lovely. The food was INCREDIBLE, everything, every pie crust and even the cranberry relish, made from scratch. The company was fun and upbeat. My husband and I were the orphan children all the adults (who's children were elsewhere) adopted for the day. It was a good time spent with great people and amazing food. What more could one ask for? The winter holidays always bring up a strange emotion of reflection. Especially Thanksgiving. I measure my life against the benchmark of that horrible Pancreatitis attack in 2004 and assess my progress, success and challenges. This year I have A LOT to be thankful for. I am ever so grateful to be alive after the 2 strokes in July, and am thankful for the medical care and brilliant doctors that diagnosed me before the other 8 strokes that were moments away from happening claimed my life or functioning. I am grateful for a husband that has stood by me through immeasurable devastation and still loves me and enjoys me in all my complexities. I am grateful for my parents and the emotional growth that has taken place this last year with my two mom's, my Mother and Step-Mother. I am grateful for the friends and family that love and support me. I am grateful for the challenges I face in life, for they are forging me into the person I am meant to be. I am grateful for adversity and criticism, for I am learning how to NOT take everything so darn personally and realize the true problem lies with the criticizer, not me! I am grateful for my puppy-children, and the addition of Porkie into our family this year, rounding us out into a perfect square.

But I am astoundingly and ever so grateful for the storm that has flurried up around this blog. I am grateful for each person that reads it and is helped in some small way. I am grateful that enough people found support and started posting on my Facebook page as a way to commune with each other and that morphed into The Fibromyalgia Fun House which is now a rockin' support page! I am so grateful that each person with Fibro I have met rose up in me a true desire to make a difference, hence The Fibromyalgia Crusade was conceived! I am grateful to have a defined path I am heading down in life that will make a tremendous change in the reality of living with Fibromyalgia for the many misunderstood and criticized that endure ignorance and spitefulness. I am just as pleased as punch and as happy as can be that whatever hardship or pain or anguish I have gone through has led me here, to this place right now. I am SO grateful to have met so many wonderful souls that have expanded my point of view in so many different ways. I anticipate a future full of hard work and accomplishment and I am grateful for the opportunity to get up and go finish that apple pie from yesterday!

Thanks for joining,

Wednesday, November 24, 2010

Presumption Of Excellence

My husband and I were sitting at the coffee shop on the patio with Yorkie & Porkie last weekend when a man with his 3 children came wheeling by. He was a pleasant looking individual I presumed to be in his late 40's, early 50's. The children were darling and seemed to be around 6, 4 and one in a stroller. I thought to myself how nice this picture of healthy and normal Americana looked. I imagined mom was at home resting and her dutiful husband had taken the children off her hands for the morning so she could have some much needed "me" time. Boy was I ever wrong! Mama walked out of the coffee shop and when she joined up with them I was quite surprised. She was young and hot! Looked my age (mid-thirties) or younger with a PHENOMENAL body clothed in skin-tight yoga gear with a caboose that would not quit! I looked at my husband and said "Boy, I sure did not expect that one!" He agreed and stated that was a woman that takes good care of herself. When I commented on her perfectly round derriere he interjected that she works hard for that body. We both wandered off into dreamland for a few seconds, imagining and coveting the perfect and privileged life this family had as they piled into their Porsche Cayenne. It was all so normal, so picturesque, so enviable. I dreamed up a charmed life of no money problems and no health problems and, well, no me problems. I caught the wistful look on my husbands face and we agreed they looked like they had the life most would beg, borrow or steal to have.

Now I know I was presuming A LOT and I am sure they have plenty of their own issues, but the irony of appearances was not lost on me. Life chronically ill is hard! It is complicated with a whole slew of issues and disappointments and struggles others do not understand. I sure did not understand before I became one of the chosen few... I thought my life was difficult before, but in blessed retrospect reflect back on the years before I got sick with so much romance and optimism its hard to remember I was unhappy and depressed and struggled with an entirely different set of complexities in my life. They just seem so trivial now. Oh if I knew then what I know now... But there is something that comes from struggling in life that gives it a meaning you just can't get anywhere else. There is something that forms deep in your soul when you fight a giant invisible monster and prevail! There is a depth of spirit that manifests itself deep within you and breeds a strength of character, a sense of self, a cause of purpose.

I am still fighting for that bubble-gum life. A life of rainbows and unicorns and happily ever after... I don't want anymore pain, in my body or in my soul. I want nice. I want pleasant. I want EASY! I don't want to struggle and have issues and grief. I want them all to just go away, to have never existed! That is the girl in me. The woman in me knows that with that would also go the knowledge in my head, the compassion in my heart and the drive and determination in my soul. So I must strike a balance. Strive for health and freedom from illness but also remember what I have been through so as to help others guide their way out of the darkness. Keep my perspective so the bad days don't take me down any further than they have to and the good days can far outweigh them. Take ALL that I have been given in life and use it for good, to further a purpose, to define a cause. So while I may look at those 5 souls and assume life is charmed and easy for them, there is no guarantee someone is not looking at me with my darling puppies and handsome husband and assuming the exact same thing about my life. We all do the best we can with what we are given. For when life throws lemons at you, grab a bottle of tequila and whip up some margaritas!

Thanks for joining,

Tuesday, November 23, 2010

Would You Shut-Up Already?

Last night I started tackling that dreaded business plan that has been giving me so much stress. I ignored it all weekend until I stopped being scared of it and started feeling really pumped up about it, viewing it as the road map of The Fibromyalgia Crusade and curious to see where it was going to take me. I was not sure where I wanted to end up, so knowing how to get there is quite impossible without first figuring out my desired destination. But once my husband and I sat down and started collaborating our goals, ambitions and dreams for this awareness campaign it started coming together. And it is bigger than even I thought it was ever going to be! We are going global, we are going huge! What started as a girl with a bit of writing talent and a strange illness blogging about her trials, tribulations and triumphs turned into a fabulous support site on Facebook. The experiences I had there, the people I met and stories I heard stirred in me a deep and intense desire to DO SOMETHING ABOUT THE MADNESS OF LIVING WITH FIBROMYALGIA! Our illness is lacking something critical (besides a cure, of course!), and that is awareness and knowledge. Hence The Fibromyalgia Crusade was born. And slowly, step by step, the plan is forming, the map knitting together, and the result is an unstoppable force that will ultimately change the reality of living with this illness.

The success of this campaign lies with YOU, my cohorts. The patients and family and friends that are not content to suffer in silent misunderstood misery any longer. YOU that are ready to start talking and educating the misinformed or ignorant or simply unaware of this thing called Fibromylagia. YOU that are intent on communicating what it is like living with an illness that does not destroy you externally, will not kill you, but will attack your quality of life so severely you are left as nothing more than a weeping quivering mess in a puddle on the floor. YOU that have taken control of your circumstances and formed friendships off The Fun House wall and stopped letting unenlightened doctors bully and dismiss you. YOU that are proud of your efforts to get up every day and face whatever challenges lie in your way, pushing through that Amethyst into Mulberry and pacing yourself enough even to turn it into Lilac.

I am a people person, a yakety-yaker, and since I no longer drag myself to the department stores a few days a week to do makeup and sell products I have far less human interaction that I am used to. So when we are out and about in public it is only a matter of minutes before a polite and generic conversation with a stranger turns into a full-fledged Fibromyalgia awareness workshop! My husband has caught me on more than 1 occasion divulging the gritty details of my life story to anyone willing to listen to me and dragged me away, apologizing for my over-enthusiastic acclamations. But I just cannot shut-up! I am so excited by what is going on here. I am amazed by the sheer  momentum and thrilled with the potential we have to affect true and lasting change. Hammering out that mission statement was tough, but we realized during the brainstorming session that this is an international campaign. I have many readers and friends from many countries, but I did not have the confidence or feel it was realistic to think I could take on the whole world at one time. My idea was to start with the USA and grow international eventually, but he challenged me to think bigger, use what is already at my fingertips and set my sights as high as they can go! So as we shore up the details and launch this movement forward, remember it is up to us to NOT shut-up. It is up to us, the grass-roots founding members of The Fibromyalgia Crusade, to start jibber-jabberin' and spreading the news and not stop until Fibromylagia is a household word.

Thanks for joining,

Monday, November 22, 2010

Childhood Schizophrenia

What is now known as Autism, a neurological disorder of unknown origin, was classified as "Childhood Schizophrenia" during the early years of its mainstream induction. That is a pretty off diagnosis if I have ever heard one! As the older sister of an Autistic brother I watched my parents struggle in the fight to raise their child. Their battle was not only in managing an angry and confused little boy with overly-sensitive sensory abnormalities and perceptions, but in fighting the world at large to understand and accept who their child was and what was wrong with him. I am so happy to say he has grown into quite a self-sufficient young man who now lives in his own apartment, holds down a part-time job and is on a relentless quest to find the love of his life! I believe he is successfully independent today because of the heart and soul my parents poured into him, pushing and fighting for his progress every step of the way. I am also pleased to see Autism is well accepted and widely known now. No longer is it considered the fault of a frigid mother, the puzzle ribbon is widely recognized and the word "Autism" is comfortable and familiar on the tongues of most people, even those with no relationship to the disorder. While I was at the coffee shop the other day a family came in. The little boy was a bit wild and making that distinct moaning/yawning sound, his attempt at speech that I recognized right off the bat. The Bartista leaned over the counter and asked the parents if their child was Autistic, for he too had an Autistic son. Wow has awareness come a long way from the dirty looks and angry stares we as a family used to get back in the early '90's!

It is our turn now. We, the Fibromyalgia patients of today, are the ones that have to fight for awareness and understanding of our condition. Simply waiting for science to figure out what causes it or medicine to discover a way to cure it is not going to work. Autism is still waiting for that as well, but they have banded together and are understood, have been heard, are recognized and respected. That is the good fight I am asking you, my fellow Fibrates, to join me in. I believe The Fibromyalgia Crusade and our purple gradiated ribbon are going to be the distinct symbols of what will one day SOON be a widely recognized, accepted and respected illness plaguing millions worldwide. I believe we are strong enough and mad enough and confused, hurt and angry enough to say ENOUGH! We are not going to be blamed for this anymore. We are not going to be treated as drug seekers or lazy disability scammers. We are not going to be dismissed or doubted or placated with a pat on the head and a anti-depressant prescription any longer!

We are going to stand proud and tall and start the change with our own behavior. We are going to stop the in-fighting and nitpicking at each other. We are going to accept the multitude of differences between us all but recognize the one similarity that really matters, we each have Fibromyalgia! We are going to lean on each other for support and understanding to take some of the pressure off our families and friends that are struggling in their own way with the impact of this illness. We are going to stop lining the pockets of doctors that don't believe us or respect us! We are going to insist on results in managing our symptoms so we can have the best quality of life our illness will allow. We are going to stop moping and feeling sorry for ourselves and start fighting! On September 4th I blogged passionately about this Fibromyalgia crusade that was stirring in my heart. I had no idea how to go about starting something like this or exactly what it would entail, I just knew something had to be done! Slowly over the last few months it has become clearer and clearer as each tile in the pavement has appeared under my foot just as I was about to take the next step forward. Our first order of business was The Fibromyalgia Fun House, our support group on Facebook. The second was The Doctor Appointment Packet, a resource for those that have yet to find a caring and compassionate doctor willing to work with them to manage their symptoms. Our third awareness piece will be coming in the next few weeks, so stay tuned. I am overjoyed and amazed at how quickly we are growing, gaining momentum. So just as Autism was once considered mental illness or the result of bad parenting, we are on a charge to turn Fibromyalgia into one of those "they used to think it was..." as well.

Thanks for joining,

Saturday, November 20, 2010

A Phoenix Rising From The Ash

This past week has been a hard one for me. Emotionally, physically, spiritually, mentally...you name it, it was flarin'! With my high-dose Prednisone out of the way and finally taking a lot I feel human on...Fibromyalgia came back! This was a hard step-down and a brutal reminder that manic and frantic sucked but Fibromyalgia is an entirely different kind of monster. I am no longer springing out of bed at 7:30 every morning and racing out the door to walk Yorkie & Porkie. I was bad about doing yoga and that just compounded to make my pain worse. Then I felt so yuck that I don't get anything done that needs to get done...then I get stressed out that nothing is getting done...then I feel worse...what a ridiculous cycle we get on! I have a Fibro-friend that was doing pretty well managing her life. Nowhere near perfect but she had figured out a system, a routine that was allowing her to accomplish enough to feel in control and still manage her overwhelming symptoms. Then came a trip out of town and a whirlwind weekend after that and she comes home to a messy messy house and totally exhausted and has been off her game now for over a month! It is so hard to get that balance back. Others just don't understand. One little bump and a big upset to the apple cart ensues!

As I meet more and more Fibromyalgia patients I see more and more similarities between our variety of symptoms and cross-illnesses. I am beginning to see on a global scale the wisdom in under-doing it. I am also beginning to see the importance of feeling good over accomplishing. Before my strokes in July my Fibro was pretty well behaved. Then I had that insane run on Prednisone to treat the strokes and am now finding my Fibromyalgia or core exhaustion or something is not nearly as managed as it once was. It sucks! I find myself choosing between dishes and laundry again. I find myself letting stuff pile up and give me anxiety and worry. I have been taken down a few notches and am reminded how hard I fought to get my footing, how relentlessly I battled the Fibro-dragon until I was in control. I would pick myself up flare after flare and just keep going, keep building until a shuffle around the block turned into a full-weight training circuit at the gym 4 years later!

So now I must rebuild again. Like a phoenix rising up out of the ashes of the aftermath of a Fibro-burn, I HAVE TO re-focus my priorities. Sleep, exercise, a healthy diet and stress management must come first, above everything else in my life. Then I can focus on the Crusade and laundry and dishes and vacuuming and cooking and puppies and bills and all the other OH SO IMPORTANT tasks I am responsible for in life. But if I don't take care of me first, there is no one around to do those seemingly crucial duties that require a precious balance to stay on top of. Then they pile up...and stress me out...and here we go again... So I am going to make a promise to you, my readers. I am going to start taking the advice I so freely shove down your throats about keeping your Lilac and resting until you feel better. I am going to pick the 2 most important things off my life to-do list and leave the rest. I am going to go to bed before midnight! I am going to go easy on myself and not expect perfection. I will slowly chip away at my assignments, while preserving my health, so I can be around to laugh and love and do all the things in life we can have and do if we demand quality of life first. For how can you have any quality of life if you don't feel good?

Thanks for joining.,

Thursday, November 18, 2010

What I Am

I am a woman that still thinks of herself as a girl. Somehow I wound up at the age of 34 but am not really sure how that happened or where the time has gone. I appreciate the wisdom in my head, the knowledge in my soul, the harmony in my heart that comes with age and experience. But man I miss the vigor and energy and sweet denial of consequences that encompass youth! I am a woman that has learned how different life can be when illness plagues your days, becomes your reality. I am a devout wife to a husband worthy of my devotion. I am married to my best friend, the one that knows me better than anyone in the world. He loves me for who I am, all my faults and flaws and quirks and oddities. He is not scared off by my illnesses, the multiples of them that I have, is actually deeply impressed by my fight, and likes my personality and refusal to conform to the norm. I am a loving daughter that has forgiven my parents for any hurt they unwittingly caused me along the way while trying to live their lives and raise their daughter. I live in the freedom of that forgiveness and that has greatly improved the quality of my life. I am a supportive sister to a developmentally disabled and mentally ill brother that challenges my patience and makes me laugh with his off the wall perceptions of things. I am a puppy-mommy that does not know what I did with myself before I got my babies. They bring a brightness and happiness to my day that I never found anywhere else. I am a woman of strong faith and I say my prayers every day before I eat and sleep and go to church Sunday mornings. I embody the Leo stereotype and am a fierce lioness, loyal to those I love and will stop at nothing to protect them.

When I left my corporate makeup artist job and ventured into the foreign land of cyber-world to start this blog I made a conscious decision that I was not going to hide who I really am. I am going to be up front and honest and straightforward. I have 7 tattoos and no intention of stopping any time soon. I have some very liberal social values and some very conservative ones too, it just depends on the issue.  I listen to rap and hip-hop and can still recite every word to Too Short's Don't Fight The Feeling. I subscribe to Vogue and Maxim and I read the articles and look at the pictures in both of them. I was an unruly teenager that did drugs and drank alcohol and ran with the wrong crowd and drove my parents crazy. I was a party-girl in college and consumed more than my fair share of liquor but somehow managed to graduate anyway. I am blunt and sarcastic and use humor, often of the dark and sardonic variety, to define my reality. I wear low-cut tops that show a bit of cleavage and don't have a problem with it and don't plan on stopping any time soon. I figure if my Priest and 93 year old Grandma can deal with my tattoos and cleavage then anyone else can too. I take pride in my appearance and feel much better when I have myself primped and pressed and prettied for the day.

I am leading this crusade towards awareness and wellness for Fibromyalgia as I am. I am not interviewing for a spot on Good Morning America, am not running for City Council or president of the PTA and have no desire to conform to any image that anyone else thinks I should have. I am strong in myself and if others find me offensive then guess what? Move it...get on your way! I am a kind and compassionate person that has been through more than my fair share of hardships in life and don't stand for disrespect or chaos. I am leading this crusade because I firmly believe that if we, the Fibromyalgia patients of the world, organize and mobilize we can truly make a difference in the reality of living with this illness. I believe this is a necessary movement to educate as many people, doctors, family and friends as possible and get our symptoms managed so we can exist with a decent quality of life while science and medicine suss out a cause and cure! I am also devoting my life to this and it is my business, one that I hope will start making some money soon since I am no longer employed. I will be selling items on my blog, awareness items that serve a dual purpose to keep me up and running and bring attention to our cause. That is what I am doing here. I am not here to play games with crazy people. A little nuts is necessary to survive the madness that is Fibromyalgia, but I am not here for someone to bundle all their frustration and dysfunction and histrionics together so they can take them out on me. I am here to stand proud and tall in who I am and the illness I have and work tirelessly and relentlessly to improve the quality of life so many of us are simply missing!

Thanks for joining,

Wednesday, November 17, 2010

The Elephant In The Room

To talk or not talk about the elephant in the room, that is the question. Well I am always the one to want to talk! I was a manager on the sales floor of the largest cosmetic department in any retail store in downtown San Francisco for a number of years. With successful management of that job comes a pretty vast knowledge of people skills. Let's just say it is a very hands-on learning experience. When I got sick and quit for good I delved into the world of blogging and Facebook page administration, things I knew very little about. It became very personal yet physically disconnected, emotionally engaging while foreign to any actual proximity to people. You get to know folks in a very strange way on a support site on Facebook. You get to know their heart and soul without verifying any physical credentials. It is an entirely different world! So perhaps that is why I forgot the years of people management skills it took me to hone but I am really quite good at.

I have been going about the "management" of The Fibromyalgia Fun House the wrong way. I have been expecting everyone to get along! I wanted so badly for us to unite and just plain forgot how inherently complex and varied people can be. I believed if we came together under a common cause we would all be best snugglie wugglie friends and everyone would be nice and we could sit around in a big circle and braid each others hair. WRONG!  This is a large group of people. Sick people that are hurting and misunderstood and suffering in so many ways. People that are not necessarily going to enjoy each others company, don't have the same experiences, personalities or realities. A large and varied group of sorts. And that is just fine. The only thing we have to agree on is Fibromyalgia and the way it affects our lives. That is what we are here for, the promotion of Fibromyalgia awareness and support in navigating life with it. A nice and funny place to come and share your woes and gain a laugh for a bit of time out of your day. But like with any large group of people there need to be rules. And The Fibromyalgia Fun House has two of them.

1. Always respond to everything in the most pleasant way possible.
2. If there is a disagreement kindly take it off the floor and go to private message.

Follow these two and I think we will be able to move forward and keep building the momentum of Fibromyalgia awareness. This is how I managed dozens of 20-72 year old women (with the occasional man) successfully for years, promotion after promotion, climbing up that corporate ladder. Everyone was required to be on their best behavior and get along with each other and play nice and not fight over customers and clean up after themselves. Their job was to sell and those were the rules that were conducive to promoting that environment. The purpose of the support site is to show support. I am sorry to have to ask all that are here for any other reason or that cannot abide by our two rules to leave. I mean business. If I am left with a shell of a support site then that is what it is, I will start over, I will rebuild. But I am serious. The Fibromyalgia Fun House is not a come-as-you-are and spew your garbage all over the wall kind of place. It is a place to express your pain, fear, frustration, success, joy, sorrow, anguish, confusion hurt and laughter with other people that understand because the source is common, the source is Fibromyalgia.

Thanks for joining,

Tuesday, November 16, 2010

That Giant Leap Of Faith

Yesterday was a bit of a rough one. It started out well enough. I woke up ready to hit Monday morning hard...new week, new motivation, new level of pain and fatigue. I was pumped up and ready to overcome whatever obstacle was thrown in my path. So I took care of my daily health and office obligations and then focused myself on writing the business plan for The Fibromyalgia Crusade that has been hanging over my head. The more I dug in the more tired and discouraged I became. Not that I am not capable...but lets be honest here folks, my true skill does not lie in the back office. I am the talent, the cheerleader, the sales girl. I can write and encourage and dissect reality from a situation and phrase it in a way that brings comfort to others. I can dream and conceive ideas and concepts and package them in a clear and concise way people can understand and gain benefit from. But if you want me to sit down and write a 35 page business plan its gonna take weeks! Months! Way too long... Not giving up so much as setting it aside, I stepped out to go run a few of the errands on my long list of things to take care of. I had received a notice from a national bank that if I came in and opened a new account with them at a specific branch they would give me $125. Thinking this would be a good place to open The Fibromyalgia Crusade's account I went in all ready to breathe life into the next phase of making this real. The sweet girl in new accounts informed me it was only good for a personal account, not a business account. Even after I pointed out it explicitly said the offer was for a personal or business account, her manager was not interested in my business because the fine print on the back of the notice stated personal accounts only. Very misleading. So I left even more discouraged...

My husband came home from a long and exhaustive day at work to find a very overwhelmed wife. He is putting in between 12-14 hours a day just so we can meet our basic bills since I have stopped working. He is pursuing his acting on the side and still trying to make it to the gym, have some semblance of a marriage and help me with The Crusade. His plate is very full! Well today his reality reached its fulcrum. I called in with my morning "I am awake and alive" call (new rule post-strokes) and could tell from the pinched tone in his voice he was not okay. He took a break and called me back and broke it down. He cannot keep up at this pace. He has reached his max and is burnt out and can't keep doing the overtime anymore. He desperately wants to help me get The Crusade off the ground and knows how bad I need his help, yet has nothing to give me. So we decided it was time. Time to live in faith, not fear, and take the leap. Time to cut off the flowing river of overtime cash that keeps us at that blessed number 0 each month and invest in our own opportunity. Time to let go and let God.

When I came home from the hospital in August I was so overwhelmed with the reality of my life. 4 bouts of Pancreatitis, a debilitating virus in the form of Chronic Fatigue Syndrome, permanent central nervous system damage called Fibromyalgia and now 2 strokes, and all before age 34! My head was spinning around on top of my body and I could not make heads or tails of the situation. I knew I was lucky, very lucky to be alive and knew I had to release control of my life. I was doing a terrible job of managing it and was finally willing to give it to God. I did not want it anymore, feared for my very existence if I insisted on keeping up with the illusion of control. My mediation became my prayer "I submit to Your will, use me for Your glory" chanted round and round my rosary beads. It was my calm, my comfort, my strength. It was the only thing that got me through the madness of high-dose Prednisone and the uncertainty of my life. And beautiful things started happening... People started reading my blog, using my Facebook page as a place to gain support and a bit of laughter from fellow sufferers. The concept of The Fibromyalgia Crusade , a patient-united awareness campaign designed to improve the quality of the life we live formed in my brain. And each baby step I took toward actualizing this was met with success and more opportunity. But at some point we are asked to put ourselves out on a limb, with no safety net to catch us, and believe we will jump onto the next branch with absolute success. That is where we are folks, ready to sink or swim, ready to take this to the next level and live in the faith necessary to receive the next blessing only our lack of faith is holding us back from.

Thanks for joining,

Monday, November 15, 2010

My Responsibility

When I was 16-years-old I got into a bad car accident. It was my Junior year of high-school and I had gone off-campus with a friend for lunch. I was dropping her back at school and as I entered the parking lot some moron came careening down one of the aisles at 25 mph and smashed into me. His old muscle car spun my Buick Regal around and left me quite a mess. I had a concussion from my brain hitting my skull, had AWFUL soft tissue pain throughout my body that I was told would require religious exercise to mitigate a lifetime of pain, started developing migraine headaches and pretty much checked out for a while. But the most infuriating part of all was my father. He drilled into me that I could have prevented that accident, that 99% of all accidents were preventable with defensive driving techniques. I fought and argued with him for weeks over this. There was nothing I could have done! This was not my fault! The insurance companies agreed with me and every time the topic came up we would get into a huge argument. I was the victim here and did not want to be held accountable for something I could not have prevented! After weeks of this one day it finally clicked. I could have slowed down and checked each aisle I passed to make sure no one was ready to pop into me. I technically could have prevented the accident. That was a very big turning point in my emotional development.

After over 3 months on steroids, on which I have been a crazy loco bojoco, I am finally down enough in dose to feel that Fibromyalgia again! I have pain and stiffness, headaches, loss of motivation... It was all covered up so well by Prednisone that I threw myself into dealing with the side-effects of manic and frantic, boundless energy with no pain, raging mood swings and sugar cravings that would send Willy Wonka to the loony bin! So now I have to shift gears and it is not easy. As I told my dad on the phone this morning, posed in perpetual Swan to stretch out my stiff and aching hips, I have to go back to managing my Fibromyalgia with lifestyle, not drugs. It is hard! It is very difficult to have to make good choices all the time, not indulge in whims of I don't feel good give me that Buttermilk Bar or I just want to lay in bed and not walk the dogs, not do yoga, not progress my life! I have to practice discipline. I have to exercise restraint. I have to display mental fortitude stronger than the weakness my physical symptoms are pulling me toward. I was at the point in my personal Fibromyalgia journey that lifestyle management and a minimum of pharmaceuticals yielded a pretty good quality of life. Of course that was before two strokes in July flipped my life upside down and shattered my illusions of the reality I existed, but I was there. So I must get back there.

Battling the Fibromyalgia monster is not for the weak of heart. We are such a brave and strong group. We suffer from such an individual illness together. It affects so many of us in such a variety of ways. Medicine is still confused about the whole thing, many doctors are ignorant and exist in this archaic "blame the patient" mentality. Family and friends continue to criticize and judge and dismiss the reality of the pain we live in each day. Those that are supportive feel helpless and angry at their inability to "fix" our problem. Oh the general state of affairs is a mess! But it is our responsibility to change this. It is up to us to create a life we can exist and function in. It is up to us to educate, refuse poor and unjust treatment, cultivate healthy relationships, minimize stress and manage our symptoms the best way we know how. And that is the point of The Fibromyalgia Crusade! We stand strong together as we navigate our individual path to management of this illness. We draw from the strength of our fellow sufferers, gain ideas from their struggles, share success and failure and ways to survive. We are mobilizing...it may take us a bit longer to accomplish things than the rest of the world but we are not giving up, not going away, not going to feel sorry for ourselves and just "take it" anymore. Stand strong and stand proud, my fellow Fibrates. We have a strange illness at a strange time, but we are the ones that are going to put Fibromyalgia on the map and bring awareness to the masses. So get ready world...cause here we come!

Saturday, November 13, 2010

All These Positive Fibro Experiences

As I have been opening my mouth more and more about Fibromyalgia, The Crusade, awareness and the general passion of my life to anyone and everyone that will listen I keep having positive experiences! Where I used to get glazed over expressions of distracted disinterest I am now finding myself bombarded with questions of genuine curiosity. I don't know if the difference is me or Fibro. No longer mopey and sad faced as I mumble that I suffer from an obscure chronic illness few have hardly heard of or know much about, I can only surmise its because I am now chipper and excited as I delve into my cause. I am a much more interesting and engaging person to talk to as I summarize this strange neurological condition that results in severe and widespread pain, cognitive confusion and horrible insomnia. The cause is unknown but it affects up to 6 million people in the USA alone and is quite debilitating (that's my quick summary, by the way). 

A few weeks back I was on the phone with GoDaddy. Abacus girl was attempting to navigate the world of domain names and websites and the rep started asking me about Fibromyalgia. As I was explaining what The Fibromyalgia Crusade is all about he was asking sincere questions to further his understanding. It was amazing! I clearly taught him more about Fibro than he did me about domains (that's okay, he did what I needed him to do), and at the end of our conversation he thanked me for my knowledge, educating him on something he knew nothing about. Then the topic of what we did for a living (ha ha) came up while I was serving Jury Duty. The jury and I were waiting in the deliberation room and I told them I was starting a health awareness campaign. They asked me what for and when I told them, two ladies quickly took over the conversation and started filling in the rest of the group as to what Fibromyalgia is! I was shocked and thrilled! Of course right as we were getting to the meat of the matter the bailiff came in to lead us back to court, but it was awesome nonetheless. Then yesterday I called the phone company to figure out why my bill had gone up. When she inquired about my internet usage I told her I was a blogger and online for like 10 hours a day. She asked what I blogged about and when I told her she was thrilled! Her sister-in-law and best friend both have Fibromyalgia and she jotted down The Chronicles web address to share with them. All of a sudden the world seems to care or at least want to know more about Fibromyalgia!

We have to hit this hard, my fellow crusaders! The world is listening now, and we need to start singing and not shut up until life with Fibromyalgia is manageable, we are no longer blamed for our illness and the general public has at least a common knowledge of it like they do M.S or Lupus. The more we talk, the more others know and the more they know, the more seriously we are taken. It is going to take HUGE amounts of education, fuss, flurry and promotion for us to turn acceptance and comprehension around but we can do it! So start singin'... Start talking to anyone and everyone that will listen. But I believe the way we go about it is just as important as actually doing it. Take your personal experience out of it. Refer to yourself as part of a campaign to bring awareness to an illness you actually suffer from, and then keep it general! Educate them with a brief summary that you are comfortable pulling out of your back pocket on demand and if you are met with doubt, skepticism or criticism kindly find a way to remove yourself from their presence and run away as fast as possible! Don't take their ignorance personally, let it dampen your passion. Then try again with the next encounter, and just keep promoting, educating and furthering our cause. As we all know Fibromyalgia is not just going to go away, and we are not going to stop until something gives, for the current state is unacceptable. So open up that throat, caged bird, and sing! Sing of a life of pain imprisonment and medical frustration. Sing about loss of function and limited treatment options. Remember, we are on a crusade and we are going to win!

And check out our beautiful logo: www.fibromyalgiacrusade.com (more to follow)

Thanks for joining,

Friday, November 12, 2010

The Many Hats We Wear

As human beings living in today's complex and competitive world we are asked to wear many hats. We are asked to achieve and produce and accomplish constant output and productivity. As healthy normal people this is exhaustive. As Fibromyalgia patients this is what takes us down. I am sitting here feeling a bit bewildered with the sheer variety, cross section of responsibility I carry. I look at the dogs and they need a bath and did not get their walk this morning because I simply did NOT want to get out of bed. I did take them out, don't think I am that terrible, but not their full 30 minutes of exercise, so as puppy mom I must take them to the park. I look at the stack of bills I need to shuffle around and try to pay as the CPA. I look at the carpet that needs vacuuming and furniture that needs dusting and bed that needs to be made as the housewife. I look at the roast that needs to be prepped for the crock-pot and empty refrigerator that needs to be filled and dishes that need to be done as the chef. I look at the marriage that needs to be romanced and cared for and husband that needs to be tended to as the wife. I look at the business plan that needs to be written and grants that need to be applied for, t-shirts that need to be made and The Fibromyalgia Crusade that needs to be propelled forward as a businesswoman, no longer content to be someone else's employee. I look at the blog that needs to be written (ha ha) and The Fun House that needs to be nurtured as a Fibromyalgia activist. I look at the yoga I need to practice daily to keep my pain at bay and supplements and prescriptions that need to be ordered and organized as the patient. I look at the nails that need to be painted and hair that needs to be colored and makeup that needs to be put on as a woman. I look at the doctor appointments that need to be made and various correspondence that needs to be maintained as household manager. I look at the family and friends I need to commune with as the daughter and sister and friend. Then there is the simple fact that I am a person that needs to laugh and have fun and not always have to be "on". And I don't even have kids or own my home, and know those are an entirely deep and complex set of responsibilities in and of themselves. Okay back to bed I go!

But seriously folks, we ask a lot of ourselves. Each day I see us struggle to "keep that Lilac" while still accomplishing something, doing the bare minimum to maintain some standard of life, hold together some semblance of normal we so desperately need to not feel completely destroyed by this illness. It is a very hard balance to strike! A constant battle just to meet the bare minimum and not lose all control of the life we have worked so hard to create for ourselves. Learning how to pace oneself is akin to earning a bachelors degree, so much work is involved, the learning curve huge! Life itself is a push-pull of balance, yin and yang. Now throw in an ill-understood illness with limited treatment options and a vague point of origin that some are actually faulted by their doctor, friends and family for having and I have no idea how we get up each day and face life! But we do. Day in and day out we keep trying, struggling, striving for our own betterment and that of those we love. I have yet to meet a stronger group than those imprisoned by the invisible illness of Fibromyalgia.

As horrible as Fibromyalgia is, as much as it has screwed up my life and taken me off the course I was on, it has also blessed me in some very strange ways. I had to stop living life at top-speed, maximum output, and learn how to sit down for a while and think. I had to get to know myself in a deep and intimate way that I had been running from my entire life. I had to learn how to forgive others in order to move forward. I had to show generosity and humility and grace and strength that I did not know I possessed as part of the healing process. I had to surrender control and learn how to rely on others and not feel guilty, not feel bad about myself because of it (still really struggling with that one). I also had to learn now to be a nice person to be around even though I was in insurmountable pain. That was a hard one. I sure have had to turn my point of view into a "platinum lining" in the clouds kind of attitude. And I see so many of you struggling with and accomplishing the same things. I see the tussle, the similarity we all face. I see the many hats each of you pile on your head and try to balance. And I am so proud of you, each person with Fibromyalgia reading this. You have sought out a way to understand your illness. You have searched for a way to not feel so alone. You have found a place where you are not the "odd man out". Thank you for the blessings each of you have given me! I have found tremendous strength in your presence, just knowing I am not alone...and you are not either.

Thanks for joining,

Thursday, November 11, 2010

Lilac Bushes and Mulberry Trees

Today I step down 5 more milligrams off Prednisone. I am actually beginning to feel human again, and am becoming aware of how deeply exhausted I truly feel from the strokes and drugs and manic and the whole ordeal that took place oh so many months ago. The steroids did a great job of masking that core fatigue and propelled me into a super-productive mode that I have not seen or felt in years! On one hand it was great… I was ON, I was EN FUEGO! Fibromyalgia took leave for a while and I experienced what it was like to be pain-free again, with energy and pep and vigor! If it had not pushed me so far over the edge of normal it would have been like experiencing life pre-Fibromyalgia. But it was too much, so extreme. I was way too pumped up, hyper, racing around in speed-freak ADD mode, starting everything and accomplishing nothing. The tremor shakes were just shy of scary and I had to medicate myself down or I would get frantic headaches and start to stress about more strokes… I existed in this strange land of drugged up to drug down, an odd push and pull on my being that felt so incredibly wrong, horribly unnatural.

I have utilized plenty of prescription drugs through my CFS/Fibromyalgia journey and other health trials as well. I have also educated myself to the reality of relying on these drugs as a lifestyle and the long-term ramifications on the body. I have had good and bad experiences on a variety of medications for a variety of ailments. Through all this I have come to believe strongly in a more natural and holistic approach to health care, utilizing supplements and nutrition and exercise and stress management to mitigate illness. Getting in tune with the core issues that trouble the soul, releasing anger and embracing forgiveness.  Learning to live in faith, not fear. It is never easy to stay on the path of positivity, so easy to get sucked into the negative, the dread and misery of pain, despair and frustration. But I keep putting one foot in front of the other, tapping into that deeply stubborn Scottish-German genetic programming that has pulled me out of many pits of darkness. By refusing to give up, accept that my reality now was not going to be my reality always, I have managed to survive and at times even thrive!

But each “health crisis”, be it Pancreatitis or strokes or Fibromyalgia, comes with it a huge phase of recovery. After the 7th or 8th time one just gets darn sick and tired of the “rebuilding” process! The post-trauma recovery time is painfully slow and the learning curve huge. Re-learning how to pace my activity, listen to my body, accept the new limitations, oh it is enough to make one crazy! So here I sit once again, my false sense of energy and productivity winding down and a deep exhaustion rising up. I have given up a lot for my health and nothing, not even Fibromyalgia, has taken from me what the strokes did. But I have given it willingly. I narrowly escaped death or severe disability and as a result of walking away from that experience blessedly intact, have joyfully surrendered. So yes, I quit my job, the stress factor itself proving superficial and unnecessary. I have put my plans to pursue learning Spanish and starting a Masters program on hold. I had to get back to basics, the simple, the doable. And in releasing my control over my life I have been blessed with a golden path materializing before me lined with Lilac trees and Mulberry bushes, with sparkling and mesmerizing Amethyst gemstones leading me like a breadcrumb trail toward a great purpose, a true calling. I may not be skating down that path at top speed anymore, but I am still truckin’, still moving forward, just taking more time. Time to stop and smell the flowers and marvel at the beauty of life in all of its complexities that lies before me.

Thanks for joining,

Wednesday, November 10, 2010

Facebook, What A Strange Relationship

I wrote a blog months ago about my former relationship with Facebook, Sorority Life & YoVille...how I became this psycho-obsessed lab-rat pushing the same button over and over again at 3am so I could collect the most money possible or compulsively decorating every little room with meticulous attention to detail. I reconnected with a ton of friends from my past; childhood, high school, college and everything in between. It was a very absorbing experience. My husband was barely tolerant and resented my glazed over eyes and obsession with the computer but allowed me to indulge... I was still on Lyrica & Cymbalta and in retrospect suppose I needed that time to zone out and decompress after years of hell battling the CFS/Fibromyalgia dragon. But I became embittered. I was 33 at the time and each day friend after friend would post their fabulous and wonderful news that they were pregnant or just had a baby. I was at the age where if one did not already have kids, they were sure to be on the way shortly. I did not want a baby and could not figure out why it was bothering me so much. Still time after time I would read each elated post and get all bent out of shape, and my bitterness was becoming apparent to everyone, including myself. I really had to sit down and soul search this one.

I came to realize what my friends were doing was normal. And it was pissing me off so badly because I did not have the choice to choose normal. Sure I could try and get pregnant and fear Pancreatitis the entire time, unable to take triglyceride medication during pregnancy. I could chance what the Fibromyalgia would do during and after...but my husband and I decided we were okay with adoption later once life (and my health) calmed down. So no, it was not the baby itself that was causing my distress. It was the fact that even if I decided to try and have a baby there would be nothing normal about my experience. The choice had been made for me. And that is what was making me so angry and bitter. It was a GLARING reminder that my life was so out of my control. I was victim to physical maladies that made something as natural and organic as having a baby a huge risk to my very life itself. One day I just up and quit. I believe I was off Cymbalta at this point and coming off Lyrica. I had taken over my husbands Facebook so I could play Sorority Life with his account and was spending the better part of 6-7 hours a day playing games. The sheer absurdity of what I was doing struck me hard one afternoon and within a matter of minutes, without a word to anyone, both accounts were deleted. I started paying attention to my life and took that Spanish class that gave me so much confidence, began writing my "private" blog and started feeling better, recognizing for the first time ever my Fibromyalgia was finally manageable.

After the 2 strokes in July God put into my head I was to open up my life, my experience, and lead Fibromyalgia out of the darkness and into the light. I knew my journey had been a nightmare but had amazingly enough seen it through to the other side. I assumed there were others out there that were needing a community, guidance, comfort. So naturally I  turned to Facebook again. Well I don't have to tell you how that turned out... To date my blog has over 19,500 hits and The Fibromyalgia Fun House, my support site on Facebook, celebrated its 1,000th member this past weekend. We have knitted together a support network unlike any I have ever seen. I think all the awesome Fibrates have flocked over to The Fun House because it truly is a place to be understood, not judged and have a laugh in the midst of constant and pervasive misery, for crying out loud! I am so pleased, surprised and amazed at what this has turned into. But the relationships formed on Facebook are different from those from the physical life. All you know about someone is what they post and a little itty bitty picture. That's all the information one has to glean the total of a person. Perceptions are different and based on each persons interpretation of the limited information others give about themselves. It is kind of fun to "create" each person I have a relationship with into who I think they are. I am sure my idea is miles off from reality but it really does not matter. What you get is the pure heart and soul of a person, and then get to play dress-up with the rest of the details of their life. So I guess Facebook is here to stay. This time, though, it is my life and not a fantasy version of some glam-obsessed avatar or cartoonish caricature. It is real relationships with real people with real issues in common guiding each other through this crazy thing we call life.

Thanks for joining,

Tuesday, November 9, 2010

Stepped On Toes And Bruised Egos

I created The Fibromyalgia Fun House, our support site on Facebook, as a different kind of support than what was out there. There were plenty of clinical, research-based sites. There are a lot of "searching for the cause and cure" types. There are tons where people want to cry and complain and leave their troubles. But what was missing, and why I think the concept organically formed on my personal page long before I actually "created" the fan page itself, was a group where you could get all of that with none of the judgment, dogmatic ideals or criticism we are bombarded with elsewhere in our lives. And then your friends would make you laugh yourself silly and suddenly the world was not such a bad place to exist in anymore! The pain not as all consuming, the fatigue and exhaustion and anger at living so misunderstood not so bad, because you were finally understood! That is the true and pure heart of the page, the spirit of the group and goal of its founder (me) and our members. I know plenty who have come to rely on the FFH to get through their day, use it as a place to gain strength to fight off all the doubt and degradation they have encountered, or are yet to as they come home from still another awful day of work to mix with a family that does NOT love and support them. Oh living with Fibromyalgia is not for the weak of heart!

But we are also a sensitive and emotional bunch! We have by and large been emotionally abused at one point or another during the progression of this illness by doctors, friends and family, co-workers and bosses, strangers and acquaintances. Tact and compassion are not qualities that are inherent in the human race! We had a couple upsets to the apple cart yesterday and feelings are still being repaired, emotional injury still healing. It was brought to our attention (and many of you already knew this) that there is a very vocal Fibromyalgia hate-site on Facebook. I followed the link posted and was saddened and amused at the same time by what I saw. Saddened because it was indeed a hate-site directly targeting Fibromyalgia patients and was extremely offensive and quite repulsive. Yet I was amused because the only reason this page was surviving was because of the controversy that was sucking everyone in! Each person that engaged with these idiots only served to further the hate-site purpose. They are trying to create chaos and get a rise, and they are succeeding! Remember how mama told you to ignore the bully on the playground, act like it does not bother you, and they will get bored and go away? Well mama Leah is sayin' the same thing here! Ignore that crap! Many of us are too weak in health to deal with the stress it causes and the rest can put their energy to better use. I quietly did my due diligence and "reported" the page and returned to my la-la land of Fun House follies to find my own page being ripped apart!

One well meaning but overenthusiastic Fun House member touched on a subject that is a hot button, and did so with an air of authority. I have seen a couple others come on our page with that approach and were chased off with their tail between their legs by group members before I even logged on to see what was happening! We are very protective of our "special place" to be accepted and understood and no one wants to be preached at. I know some of you felt our ranks had been infiltrated and defended our territory with such pride and conviction I did not realize what a big deal it actually was. For that I do apologize, I missed the boat. But I want to take this as an opportunity for us to grow bigger and better. I have been talking since day one that a main reason I believe we are still treated so poorly is because there is so much infighting amongst the Fibromyalgia community itself we cannot even begin to band together and further our cause to the world at large. The Mission Statement of our Fibromyalgia Crusade states: 
To present a united front and stand strong as one collective patient body diagnosed with Fibromyalgia Syndrome. We accept the “cause” is medically unknown at this time and there may be a cluster of illnesses sharing similar symptoms residing under this diagnosis. Working with that knowledge, we will not accept being treated as though this is “all in our head” or we are crazy, lazy, wimpy or junkies. We are suffering real pain from real illness and deserve respect from those we know, recognition from the medical community and results in managing our symptoms and quality of life. 
I can only surmise there have been countless others that have attempted similar efforts in the many years folks have been suffering from Fibromyalgia. And I believe that as the numbers get bigger, which is critical for true awareness and to affect real change, the risk increases as well. Well I will be damned if we are going to go the way of the dinosaur! We are on a roll here, people! We just celebrated our 1000th member in under 1 month this last weekend. We are learning and growing and gaining confidence and moxie and getting stronger in mind, body and soul through the strength of each other. The progress in my own life, as well as what I witness in many of my friends, is remarkable. So let's let the division, the difference of opinion, the harshness of approach, end here. Let's get back on the same page and stand strong in support, true and loving support, of each other and the individual journey we each are traveling while grasped onto the hands of our fellow Fibrates for that strength we just cannot get anywhere else.

Thanks for joining,

Monday, November 8, 2010

What Is Managed Fibromyalgia?

What is this managed Fibromyalgia I keep going on and on about? Notice I am not preaching a "cure", a do this or do that and all-your-aches-and-pains will magically disappear approach to treating Fibromyalgia. The very basis of our awareness campaign, The Fibromyalgia Crusade, states we agree there may indeed be more than 1 cause of Fibro, so 1 cure is certainly not going to fix everyone! But there are many levels of misery that fall under the Fibromyalgia umbrella. There is the I ache and am sore and don't have that much energy and don't sleep that well kind. Wilted Lilac to Mulberry-ish. Then there is the I hurt and am horribly stiff and have a headache and am weak and really can't sleep for very long version. Definitely Mulberry sliding into Amethyst. But by far the worst is the I can barely walk and feel like I am crushing myself simply by standing up and am in so much pain, can't sleep hardly at all, my head is in a vice and I don't remember my own name variety. Black Amethyst to LMA. Most of us have experienced the vacillation of symptoms associated with this condition as it fluxes in and out of our daily lives. We complain of pain, Fibro-fog, flares, insomnia, upset tummies, stiff and tingling extremities, oh the list goes on and on. Some can get up each day and go to work. Some can barely get out of bed. And most of us experience both, often in the same week! What gives? What is the goal? What are we shooting for, wishing for, supposed to reach for and work to get to? This is seldom addressed. We are all so concerned with what is wrong and why (neither of which modern  medicine can really answer right now) that we are forgetting to focus on what is really important, quality of life today.

I am managed. It has taken a lot of work and the right doctor (finally!) and lifestyle and behavior modification beyond what I thought I was capable of, but I can actually say I am moving forward in my life, even if it is at a turtles pace. For many years I was falling down that rabbit hole of despair with no way out. Then I sat at the bottom for a long time, each day in my life living hell. In so much pain and so mad, no screw that, FURIOUS about the whole thing. Angry and frustrated. Then I moved to a city where the sun shines over 300 days a year and I could afford to work less and I got with the right doctor and on the right combo of meds and slept for a few years and reduced stress and strangely enough I found myself enjoying life again. Each Sunday stopped consisting of my crying and freaking out because my husband wanted to go do something fun, but the thought of putting myself together and actually doing something after having worked a few days in a row was more than I could manage. His disappointment was apparent, then the guilt that I was ruining his life would set in, but I could not push myself, simply could not get up and do it, and I would wig out and sob and stress myself straight into LMA, I would! No my house was not a happy or fun place to be for many many years. But now we enjoy laughing again, and are establishing life goals, something I refused to do for years because I had no idea what next week was going to be, let alone next year. We spend quality time together and have found that lighter side of life that was hidden by the eclipse of chronic and pervasive illness for so long.

Yes I still have Fibromyalgia. I still have pain, get headaches, have phases where sleep is difficult, forget important things like my step-mother's birthday (I am still upset about that one) and get knocked on my tushie for that one specific week a month, but all in all I am in control of my life, not Fibromyalgia. I am not victim to her mood swings or extreme insomnia or constant and pervasive pain on a daily basis. There are specific things I must do, and when I do them I enjoy the pleasure of a decent quality of life. Not like I was before I got sick, no, that would take a lot to get there. That would take a cure. But I can set the tone for my day, make plans and know I can keep them, have reasonable expectations and watch my progress increase inch by inch. This is what we are working for. This is what I am talking about when I say managed. The first step is to get that sleep and pain under control. The right doctor is a MUST for this. Then there is the emotional, forgiving yourself for getting sick and letting go of past emotional pain. Believing in yourself and your right to a better quality of life. We are usually so darn hard on ourselves! Then there is nutrition and exercise and pacing and indulging the need for sleep that has often been shortchanged for years. I am talking about a holistic, or total body approach, to wellness. No this does not mean no prescriptions. It means look at your body, mind and soul as one entity and nurture all of it. Everything you put in yourself manifests itself in your physical body when you have Fibromyalgia. For instance, that doughnut I just ate, well now my tummy feels not so good! So let's walk this journey together and reach a better quality of living today, for who knows what tomorrow will bring...

Thanks for joining,

Friday, November 5, 2010

The Doctor Appointment Packet

I have been hard at work over in Leah Land compiling a valuable resource for us Fibromyalgia patients to arm ourselves with when dealing with doctors and modern medicine. In the last two days alone two of my friends have been dismissed by doctors refusing to give them the medical care they are in desperate need of. It is INSANE how this still happens. When I was at the neurologist earlier in the week I told him what I had been up to...The Fibromyalgia Crusade...the blog...The Fun House. I told him my mission is to give the power back to the patients to receive proper care and get managed. I suggested Fibromyalgia is still dismissed by many in the medical community. He looked at me in surprise and said, "Not anymore." I told him he would be amazed at the stories I hear and yes indeed it is still doubted!

The fact that this is a messy and complex and a highly individual illness sends some doctors over the edge. They don't want to deal with it. They can't fix it so therefore they blame the patient and transfer the burden of responsibility to a mental or psychiatric condition or worse, a drug addiction. Unbelievable! Horrific! Tragic! And it is enough! We are soldiers in an army that is going to change the reality of living with Fibromyalgia. But how can we fight when we can't even get out of bed? So therefore the first order of business is to end the madness and take back our power. Take it back from dismissive and doubting and degrading doctors that we have allowed to get away with treating us horribly because we are so desperate, in so much pain, so limited with insurance and costs and just being so darn sick! We are going to kick them to the curb and seek out doctors that take their Hippocratic Oath seriously and personally. Doctors that are committed to working with us to find the specific treatment plan that works for each individual patient. I just found my first golden doctor last year. I walked into the appointment with spreadsheets and charts and symptom lists and medication and treatment records and she was a bit overwhelmed with my pro-activeness but ultimately appreciated it. We have a fabulous rapport and she listens to me, helps me, got me off Lyrica when I was told I would never get off it despite substantial side-effects. She problem-solves with me and challenges me to manage my lifestyle so I rely on addictive medications as little as possible. That is where I am at in my Fibromyalgia journey and she keeps me progressing and I am so happy to have finally found a doctor that works with me.

So The Doctor Appointment Packet I have put together is full of resources and information and suggestions and places to record your symptoms, goals and history. It has links to websites for both Fibromyalgia information and sourcing out a new doctor. It clearly states our burden of responsibility to not stop seeking until we find the right doctor to help us manage our symptoms so we can get out of bed and back to living! Life with managed Fibromyalgia is not like it was before the illness hit, but is loads better than living in excruciating pain and fog and insomnia incessantly and pervasively. We have to get this under control! It can be done, it just takes the right combination of meds and lifestyle modifications. So this is the first place we start in the long and exhaustive Crusade to change living with Fibromyalgia. Check it out and please give me your feedback as you utilize the resources and present doctors with the information provided. I want to see way more Lilacs than Amethysts out there and believe if we come at them like a hailstorm things will change, and only for the better.

Thanks for joining,

Note: I have set up Paypal for these currencies: US Dollar, British Pound, Euro & Canadian Dollar. Please let me know if you cannot successfully complete the transaction. Thank you!

Thursday, November 4, 2010

Today Is A Rough One

Our best friends from when we lived in San Francisco are getting married this weekend. They are the one couple in our 10 years together where we ALL ACTUALLY REALLY LIKED EACH OTHER! This is quite hard to find. Not me tolerating some bimbo my husbands friend is dating, or he putting up with a nice guy he has nothing in common with my friend is married to. We all genuinely got along, hung out like three times a week and went on vacations together. They are awesome, Godparents to the Yorkie and parents of a wild Boston Terrier the Yorkie is best friends with, grew up with. We moved first and parting ways was hard on all of us. But shortly after we moved to Arizona they moved to Florida and that is where the wedding is taking place. And we are not going. Oh we had every intention but after my two strokes in July, my husband having to use up all his vacation to take paid time off to be with me and then my "retirement" from my job there is just no way we could swing it. Unfortunately paying rent was more important. Man it sucks being an adult sometimes!

They are the nicest people in the world and completely understand. I told them when I get my book deal we are taking them on a vacation and she promised to come visit me in her wedding dress. So I called the bride this morning while I was walking the pups to wish her a happy birthday (tomorrow) and wonderful wedding (Saturday). I wanted to touch base, just leave her a message that we are thinking of them and there in spirit before everyone piles into town and the hailstorm begins...and I started sobbing like a baby! I choked my way through the message and when I hung up it hit...and not just crying and teary-eyed, but big gasping blithering sobs with fat tears rolling down my face, wracking my body as I strolled through a perfectly pleasant residential community just beginning to stir for the morning. I sure hope no one was looking out their front window! Some crazy lady walking a Yorkie and a Porkie sobbing like half the world had just come to an end, for goodness sakes! I calmed down a bit, then when my mom called a little later started up again! I guess you can say I am a raw emotional nerve today and this is the cord that struck it...

My dear friend Fibromyalgia is coming back. We took a bit of a Prednisone "break" for a few months and that was its own kind of hell but I did enjoy the absence of pain, oh I sure did! I am slowly lowering my dose as my safe "no stroke" zone approaches and today was the first day the pain hit me hard. My S.I. Joint feels like there is a fireball in my left butt cheek that is radiating pulsing throbbing flaming licks up my back and down my leg right on beat with each heartbeat. It is all I can think about. Everything I do, every thought I have is secondary to the pain. Oh I know you all know so well. Its not like I had forgotten, exactly, but the brain does a wonderful thing to painful memories and minimizes their impact. Otherwise no woman would ever have a second child! I am tempted to curl up into a ball and feel sorry for myself, indulge in truffles and bicker fight with everyone I come into contact with. But this is life, this is real, this is for the long-haul. As we all know so well Fibromyalgia is NOT something that is just going to go away. So I resist the impulse to completely blow off my responsibilities and plot ahead. I am trying to be nice and not snap at my husband, yell at the puppies or throw my computer across the room. Its not the computers fault I am Abacus girl! I am faithfully working to further The Fibromyalgia Crusade and am even going to groom the dogs. I have to. I cannot succumb to the miserable bitter person Fibromyalgia wants to turn me into. I must keep my head, my humor, my focus on the cause. I did eat all of the truffles though.

Thanks for joining,

Wednesday, November 3, 2010

The Land Of The Normals

I decided to break my routine this morning and skipped our invigorating walk, instead taking the puppies to the park. The wild Porkie needed to run out some of her puppy energy I can never walk fast or long enough to exhaust. I remembered a Starbucks gift card sitting in my wallet and threw the laptop in the car, thinking we would sit outside while I worked and we could enjoy the sunshine and warmth. It is finally cool enough to go outside! Seated next to me was a group of women planning a fund-raiser. They struck me as the Junior League ladies-who-lunch type and snippets of their conversation floated my way. Eventually it turned toward their emotionally immature husbands and the troubles of their lives. I eavesdropped with barely concealed rapt attention. It was an opportunity to see into the world of the normals, a land I left so long ago! Oh their problems were so different than ours, and I realized I had forgotten what it was like for every action and reaction to be not coated in the reality of chronic illness!

As Fibromylagia patients we are pretty used to ups and downs...the fluctuation of mood, hormones, pain levels, reactions to meds, the ability to sleep, financial stress, obligations, oh the list goes on... And those that live with us or work with us or for some odd reason actually hang out with us by choice have to learn to either engage or disengage with that behavior. No, living with Fibromyalgia, or with someone with Fibromylagia, is not easy. I hear from a lot of you that many of your significant others and close family have chosen to disengage and this breaks my heart. I know this adds greatly to your stress level and that translates directly to your health. I see many sitting in a holding-pattern marriage waiting for the signal to land and deplane. I see the anger and frustration, hurt and pain. I see the ache caused by bewildered abandonment from parents and children. I know this only compounds the many symptoms we suffer from and wish I could wave a fairy-godmother wand over every one of you dear souls and take the confusion and betrayal away. But I can't. No one can. Just like no one is going to give you a magic pill or treatment or cure for the pain and exhaustion to make Fibromyalgia to go away. And so it all coexists...

But there is a way to improve the quality of your life. It takes a lot of hard work and determination. It takes personal excavation of learned behaviors and emotional wounds. It takes buckets of forgiveness, toward both yourself and all those that have hurt you along the way, but this in no way means allowing them to continue to treat you poorly. It takes a come hell-or-high-water I will do this! type of attitude. It takes support from others and belief in yourself, and I believe we have laid that foundation here! The Fibromyalgia Crusade is a mentality. Its all about changing the reality of living with Fibromyalgia, not allowing that "blame the patient" mentality to exist anymore, beat us down, chew us up or spit us out. It is about the change starting with us, right here, right now. We had our first meet-and-greet, two Fun House friends met in person and had a blast! My heart got all swelled up and bubbly when I heard this! That is true support, and it is happening because of all of you that take the time out of your day, your day full of pain and exhaustion and obligation, to click on The Fibromyalgia Fun House and see what the rest of us have been up to. So will I ever be sitting at that table next to me at Starbucks, engaged with the normals planning the next Junior League function? No, I most certainly will not. I will be next to them absorbed in the charge of our cause to make this world a friendlier place to be sick with Fibromyalgia.

Thanks for joining,

Tuesday, November 2, 2010

She Is Coming To Life

Oh my dear Fibro-family, I write to you today sitting on a bewildered cloud of progress, passion, excitement and confusion. The Fibromyalgia Crusade is sprouting little purple flowers, bursting out of her bubble, chewing her way out of the cocoon of preparation and ideas and dreams that have been building up in my mind. On September 4th I wrote my first enraptured tirade about linking up, joining together and starting a PATIENT-UNITED awareness campaign. I had no idea how to go about forming this campaign, furthering our cause or spreading awareness, but knew it had to be done. There are still entirely too many Fibromyalgia patients victim to horrific symptoms lacking proper medical treatment to manage their illness and therefore their life. The amount of doubt and blame and sheer unkindness shown by medical professionals, friends and family alike astound me. The everyday struggle a person with Fibromyalgia goes through just to survive, keep their head above water, spirits up and functioning on some level is all consuming and often more than we have to give. It is heartbreaking to see how broken down so many of you are from the perspective of someone who has been there herself and was able to find a little piece of twine that grew into a rope strong enough to pull me up and out of that well of despair. I want you all to feel better and stop being abused by people that just don't understand because they don't want to!

So amidst my Prednisone-induced mania over the last 2 months I started planting seeds. Seeds that are now poking their little heads up through the soil, and they are oh so pretty! I have "branded" The Fibromyalgia Crusade, trademarked the logo, copyrighted my most impactful ideas, purchased domain names, consulted attorneys and created Leah Tyler Enterprises, the mama company of it all. I have compiled one kick-ass Doctor Appointment Packet that will help many of you that are suffering horribly navigate your way through a doctor appointment to get the treatment and relief you so desperately need. I see mass awareness in our future...T-shirts, water bottles, coffee thermoses, bumper stickers, license plate frames, the most beautiful awareness bracelet ever and oh so much more! I will take our plea to Youtube and OF COURSE the book is just waiting...patiently waiting. I have visions of spreading the name The Fibromyalgia Crusade through a variety of media outlets and bringing Fibromyalgia awareness to a whole new level as I stand strong and yell loud with the strength of all of you behind me.

It both gives me goose bumps and exhausts me at the same time! But she is on a roll, my friends, one that cannot be stopped! Funding the start-up of a business is tough and many of you have offered to help me in the way of donations. I have been waiting my whole life for people to pay me just for being me, ha ha ha! I truly and sincerely thank you from the bottom of my heart for believing in me and our cause, but this is quite a sticky situation. As you know I have had to quit my job and am starting a for-profit business initially, therefore cannot accept donations. They would not be tax deductible for the donor and I would not feel right taking your money to start my business. Oh the non-profit part will be coming soon, and I will ask frequently and often for your cash at that time, you can be sure of that! But the best way, ethically and morally, for The Fibromyalgia Crusade to get off her feet is for you to buy the products I will be selling. The first is The Doctor Appointment Packet I should have up and ready to go within the next few days (ignore the Paypal link for now). From there the t-shirts can be made and then you can buy those! Then you can decal bumper stickers galore all over your car, drink from the coffee thermos and water bottle at the same time and wrap yourself up in a big fat blanket of awareness as you run around advertising The Fibromyalgia Crusade for all to see! So hang on to that cash you want to give away and wait until you can get something for it in return, something that will further the cause and raise awareness, the whole purpose of all this anyway, completing the circle of life beautifully.

Thanks for joining,