Saturday, October 30, 2010

I Am Sick Of Apologizing

I am sick of apologizing for being me. I am sick of apologizing for being sick and not as productive or efficient or clear-headed as I once was. I am sick of apologizing for the passion that consumes me to get The Fibromyalgia Crusade out of my brain and actually doing something to better our lives. I am sick of apologizing for not going to bed early enough or keeping my house clean enough or taking the time to make myself pretty every day. I am sick of apologizing for not being available at the drop of a hat whenever someone else has a day off and wants to play. I am sick of apologizing if what it takes for me to manage my illness infringes on what you want to do for the moment/hour/day. I am sick of apologizing for having to rest and take it easy after a lot of activity. I am sick of apologizing if my day gets behind me and I need to write and post my blog after the sun has gone down. I am sick of apologizing for not being able to do what others want me to do when they want me to do it. I am sick of apologizing for checking in on The Fibromyalgia Fun House after being away for a while. I am sick of apologizing for not answering the phone when I am in a really bad mood or busy or just don't want to talk to anyone. I am sick of apologizing for taking care of myself and setting limits and boundaries that section me off from you. I am sick and tired of apologizing to you, but more important, I am sick of apologizing to me!

I am in a pickle. It takes money to start a business, legally protect your ideas, hire the professionals necessary to ensure you are not making colossal mistakes that could cost you a fortune or your intellectual property in the long run. Yet I can barely pay my rent, my husband is working double-time and is about ready to collapse and I had to quit my job because after 10 years, 5 of them battling CFS & Fibromyalgia, 2 strokes finally made it just too much to "power through" anymore. So how do I do this? It's a dog-eat-dog world out there, and plenty of people are lurking around the corner waiting to steal what is not theirs. How do I get this off the ground and make the impact necessary to effect change in our lives, the life of the Fibromyalgia patient, and not sabotage my own existence? Do I just guess and do my best as I go? Pray I don't make poor decisions that result in huge and costly mistakes down the road? Well, I think so! Its so easy for me to preach to all of you, my readers and Fun House friends, to relax and realize you are doing the best you can with what you are given. One thing I am sure you all have noticed by now is how gifted I am at giving advice that I do not take!

So I am going to take a deep breath and draw the line in the sand where I stand. I am going to stop apologizing for not being the girl I was in the past. Always up for a good time, easily distractible and not terribly focused on my goals and objectives. I am going to take pride in my work and recognize that when starting a business it is not unreasonable to invest more time, energy and resources than one has available. I am going to stay calm and clear in my mind and spirit. AND I AM GOING TO STOP APOLOGIZING! I have done nothing wrong but get sick, grow up and define my purpose. I am proud of who I am and anticipate the momentum, the results of getting The Fibromyalgia Crusade off the ground will bring that badly needed break to the pressure and confusion that consume me. And I will start to see the change it will bring to the lives of each and every Fibromyalgia patient involved as we stand together as 1 strong voice, a collective patient body that will not take the doubt, criticism or ignorance that is serving to keep us suppressed and down any longer.

Thanks for joining,

Friday, October 29, 2010

The Yorkie vs. The Porkie

The Yorkie has lived a charmed life. He was a heavily-researched, paranoid first-time-buyer picked-from the-litter puppy that cost a pretty penny and was brought from his mother to his new home at 10 weeks. My husband and I read every What To Expect When You're Expecting type of dog training and pack leading and puppy socializing book for months. We were your typical type-A DINK (double-income-no-kids) couple that were determined to have our perfect little pure-bread accompany us on every outing and excursion. He knew how to "sit" by the first week and vigorously attended training classes, oh we did everything right! On Sundays we took him to what I called "Yuppie Puppy Play Group", where we paid $12 so he could romp around an indoor dog-camp with other puppies that were not old enough to receive their full vaccinations and go to the park. Oh and a dominant little thing he was! Humping everything in sight, so full of pack-leading-testosterone that within 5 minutes of entering the dog park on a busy Saturday afternoon, would create a huge fight and we would have to leave. But he was smart as a whip and so adorable and at around 2 and-a-half this INCREDIBLE dog emerged. He was well mannered and such a good boy and so sweet! I assume it felt like what sending a child off to Harvard must feel like. We had done our job and done it well! People would beg me to let them babysit him...but precious few were ever given the privilege. Only his Grandmother and Godmother, to be exact!

The fact that I got sick with mystery illness (CFS) two weeks after getting him did have an impact on his upbringing. He was my emotional strength and being a human-like intelligent, extremely emotional dog anyway, we became very in-tune with each other. But he loved to torture me! He clearly preferred my husband and when we would go over to said Godmother's house he would sit and cuddle with her for hours, flicking nannie-nannie-nannie looks at me the entire time. Yet he was always there to lick my tears or curl up with me during my numerous and frequent breakdowns while I was spiraling into the misery of Fibromyalgia. He was none too happy about the move to Arizona, much preferring the cool briskness of Northern California, and would not make eye contact with me for the first 3 months we lived here. He had no problem with my husband, however. So as we were approaching our 3rd summer of HELL my husband and I were seriously considering getting another puppy. Neither one of us were up for the work, the potty-training, the chewing, the rambunctious energy that came with a baby puppy. And we were broke, too, but knew he needed a buddy, someone to play with and live with and love. So it was ever present in my mind but I was not sure how it was going to become a reality.

Then one day in May we stopped by Home Depot to get a pot for a palm tree and next door, out in front of Pet Smart I saw a flash of black and tan rolling around an adoption pen with some Chihuahuas. My husband and I gave each other troubled glances as we agreed to just go look. She was clearly a mix, with the coloring of a Yorkie but a brown head and curly hair. The rescue lady said she was 7 months old, Poodle-Yorkie, picked up roaming the streets a month before by animal control and was rescued from the pound 2 days before her lethal injection. She was very friendly with other dogs but had a HORRIBLE fear of people. I held her and she was so sweet and timid and shy but I could see a spark in her eye that had not been broken. I saw something I could work with, some potential. My husband let me run wild with this one and a week later we picked up our baby girl who tried every way imaginable to get away from us. She stuck to her crate for the first day, just observing. The Yorkie was curious but polite, and she would intently watch our interaction with him. The second day she passed out cold and I assumed this was the first time in most likely months she was not in constant fight or flight alert. The third day she ventured out of the crate and slowly but surely this little spirit has blossomed into quite the wild child! She has springs on her feet attached to 9" baton legs and jumped the baby gate the first time I tried to confine her, yet drools herself into soaking wet despair if left in the crate. She vomited on every car ride and peed inside more than out and twisted herself up something good while getting used to a leash. But she is one smart cookie and took to training class well and has gotten VERY comfortable with us and most importantly, the Yorkie has fallen in love. The difference between my two children is huge. He is a symbol of the life we thought we were going to have, picture perfect and fancy and highfalutin. She is a symbol of the life we got, meshed with problems and complications and a little rough around the edges. I laugh now, as she races up and down the hall at top speed and the Yorkie takes a swipe at her at each pass, and am so glad we wound up with two very distinct dogs. One a symbol of hope for a better tomorrow and the other a promise of a reality that is messy and complex and an entirely different kind of beautiful.

Thanks for joining,

Thursday, October 28, 2010

Leah, Is That You?

Today marked another decrease in the dreaded Prednisone that has been ruling my life since the strokes at the end of July, and I am feeling this one right out of the gate! This morning started out normal as usual, but about an hour in I noticed my productivity was actually that, productive! I was not bouncing around and flipping between internet screens and pushing papers from one side of my desk to the other. I was actually getting something done! I locked on to the task at hand and was quickly doing something that has not happened in a long time. Instead of re-arranging my To Do list I was actually crossing things off it! I kept powering it out...feeling so productive and efficient and pleased that things I have been gearing up to do for weeks now were suddenly getting done with focus and determination. Then I realized afternoon came and the tremor shakes did not, causing no need for a guilty 1/4 Xanax to calm myself down. Feeling pretty good I kept going, hard at work on getting The Fibromyalgia Crusade out of my imagination and into reality. Then about 8 hours in I hit a wall...

GROUCHY came to camp out and I realized I had been going at it for hours and was hot and the house was messy and I had not yet "finished" this infinite number of tasks assigned to me by me. I skipped getting pretty for the day and felt nasty and lonely and burnt-out and stiff. And it hit me...this is life without Prednisone! I have been bitching and moaning about manic and frantic for months now. I have flipped myself upside down and all around pushing out 10 hour days and keeping the house neat (never clean) and myself presentable and the puppies well-cared for and cooking good meals from scratch every night for dinner. I have talked faster then a chipmunk on fast-forward and raced around starting projects and finishing nothing. But the energy! I hated it as much as I loved it. And now that I am getting a glimmer of what life is going to be like without it...well...let's just say I am confident getting off this drug is going to be as difficult as being on it was!

I am reminded again how hard life with Fibromyalgia is. The constant ups and downs. Never waking up to be the same person every day. What victim we are to whatever drug is treating whatever condition or symptom is demanding the loudest for the moment. Fluctuating energy and mood and happiness. How hard it is to make plans and be predictable. How hard it is to even count on yourself. It dawns on me the strokes could indeed have knocked back the progress I had made in managing my Fibromyalgia, I have just had no idea because everything was hidden under the Prednisone pull of hyperactivity! So this is going to be an interesting one, friends. You are going to get to know Leah as the surly, moody, often bitchy up and down girl I have been my whole life, sin August, September and October. You will have to decide for yourselves if she is worth putting up with, and I will let you know as soon as I decide as well.

Thanks for joining,

Wednesday, October 27, 2010

Starting My Business

Yesterday I woke up bright and early, well it was actually still dark out and not by choice, so I decided to attack a huge source of irritation in my life...the closet in my office. I gutted it and slowly organized it back to containment, even lugging heavy boxes up from the garage and totally wearing myself out (and many of you too, sorry!). I took quite a few trips down memory lane. I perused the hippie-love-child photo journey of my parent's wedding album my mother turned over to me years ago. I was shocked with how much I look like she did. I don't see it as much now but my mom at 24 looks just like me at 34...ha ha ha I wish. Found a letter my first boyfriend wrote me from jail professing his undying love, all sorts of funny tidbits from my childhood, Cabbage Patch Doll adoption certificates, birthday cards from deceased grandparents and even a $2 bill from the year I was born! I found an article from my home town newspaper I was interviewed in my junior year of high school stating my plans for the future included making a lot of money and then marrying rich. That one gave me a good laugh. I piled up journal after journal after journal and put them into a scary box, knowing the source of one book one day will include all the madness contained within. I found the dedicated and autographed picture of The Pointer Sisters from the year we went on tour with them when I was a little girl. Oh I found lots of fun stuff, threw away lots of junk and put it all back together again so organized and purposeful even my husband walked in the room, with the closet doors shut, and said it felt much better in here, and I agree. My energy had been blocked up with all that disorganized clutter and I was having a hard time getting myself focused and skipping down the road of starting this business...The Fibromyalgia Crusade.

I have so many thoughts and ideas and new ones form every day and it is all so overwhelming! I have experienced such a coming together of amazing and wonderful Fibro-friends as The Chronicles Of Fibromyalgia and The Fibromyalgia Fun House have sprung to life, a life I never expected! I have been blessed with the opportunity to pursue the American dream of owning my own business while passionately raising awareness for a damn good cause! I have been inspired in so many ways by so many beautiful souls locked inside the prison of a pain-wracked body and have felt a deep and strong calling on my life to take my talents and abilities and do something about it! But where to begin? How do I do this? Yes I have run businesses before but it was always someone else's business model and I was just the tool used to implement one small part of it. This is entirely different, it is scary and overwhelming and new! I have been without an income since July (save for 2 short days back at work after the strokes that made me realize I had to quit or was going to die) and don't have money for start-up costs or any way to pay the professionals that would just tell me what to do.

I am struggling to balance my life around this, filled with Prednisone manic and unending enthusiasm that will absorb my every thought and action for the day. I am still trying to take care of myself and be a dutiful wife and a good puppy-mom and fun person to be around, not a stressed-out self-important twit! I am struggling with getting enough sleep at night, not for lack of ability (my friend Xanax takes care of that) but because I am just plain busy! Keeping up with The Fibromyalgia Fun House alone is a part-time job. Yet this is one of the most exciting times in my life. I saw my psychiatrist last week and said, "Depression? Oh that's funny! I am on the charge of my life and depression is the farthest thing from my mind!". He was quite glad to hear that, especially because I started seeing him after I got my Fibromyalgia under control, but could not get happy, passionate, enthusiastic about anything and did not understand why when I was on the upswing of my dreams was still so miserable. So once again I will march toward this challenge with deep faith. Faith that I am on the right track, the money will come from somewhere and ultimately at the end of the day our cause will be furthered. I am a patient, I have no control over the research and development of causes and cures. But if I have my way this very persuasive sales-girl will have Fibromyalgia on the tip of America's tongue and its sufferers misunderstood no more.

Thanks for joining,

Tuesday, October 26, 2010

What We Are Fighting For

I received a message yesterday that I cannot get out of my mind. There was something about it that bothered me, intuitively I knew what it was, but I like to give everyone the benefit of the doubt and gave the inquirer ample opportunity to respond. Yet there has been no response. So as I gutted the bane of my existence this morning, the closet in my office where everything that does not have a home gets SHOVED and SMUSHED and PILED into, this was whirling round and round my head and I got a bit steamed up and have decided to address this publicly. I believe this attitude personifies so much of what we are fighting against. It represents what I have intentionally worked so hard to NOT make The Fibromyalgia Fun House and The Chronicles Of Fibromyalgia and ultimately The Fibromyalgia Crusade about. Instead of paraphrasing I am gonna give you the verbatim (I have left the typo's intact):

Inquirer: "Let me ask you a question...and I want an honest answer, if you please.... If I can get you out of FM pain in one month would you be willing to try? and it's risk free....if nothing happens you'll get your full money back,unconditional!
2nd part: Now if you were to be pain free....would you accept that it can be done and put that on your blog...?
I'm extremely curious (and this is not directed towards you in particular) about so many people who profess to be in such agony and brain fogs and can't sleep etc,etc, yet when you offer them a proven way out they refuse , why?
Is it becasue they have seccummed to the ilness and feel that if they loose it they will have nothing left . I'm serious , i just don't get it. Maybe you can shed some light in my direction.
I'll appreciate any comments that you can offer pro or con.
If you were to become pain free and stayed that way....would you join me and a few others i know of that are pain free and not dependent on drugs anymore would you to be an advocate for that?"

Leah responds: "Oh that's a complex one. It would seem a no-brainer but you have to realize you are dealing with an emotionally abused patient body and I do not use that term lightly. They have been dismissed by not only doctors but often their own families and treated horribly and are a scared and cautious bunch. Don't know if you have Fibro or not but the pain is unreal and you become a desperate person trying to hang onto your life and failing at it and often times there is no one around to help, support you. It is terribly sad and wrong and that is what I am working so hard to change.
So when offered a "magic cure" they would wonder 1. Is this for real or scam and 2. Why would this guy have it and not my Dr.?
So do tell about this magic cure all! You have intrigued me!"

No answer. So I guess I got the answer to MY #1! But it is the phrasing "Is it becasue they have seccummed to the ilness and feel that if they loose it they will have nothing left" that hooked me, snagged at my heart. Where do I even begin with this one? I do not see 1 single person in our group that has succumbed to the illness. I see people that at times succumb to the exhaustive fight every day is, but that is just for a phase. What I do see are strong and brave fighters. I see proud women and men that are trying to swim upstream against a waterfall! I see people that indeed have nothing left, but not for lack of trying on their part! Does this person have Fibromyalgia? If so what is this "proven" magic cure that we all just want to hide behind our excruciating pain and miserable reality to avoid?

And I was reminded anew why I am doing this, carrying the Fibromyalgia cross for all to see, building an army and marching us to victory. This illness is REAL, takes a lot of hard work and a very specialized and individual protocol but can be managed. The attitude presented above negates the very reality of Fibromyalgia as a valid and and serious condition. The attitude above is why we are having to fight so hard to be taken seriously! So I am still waiting, dear inquirer, as to what this "proven" 100% money back guaranteed "cure" is? I am still waiting...

Thanks for joining,

Monday, October 25, 2010

The To Do List

I am a To Do list queen, and a queen procrastinator as well, so you can imagine how well those two go together. Then add Fibromyalgia and Prednisone on top of that and what you wind up with is a frantic quivering mess that gets nothing done but everything started! Then the internal rebel kicks in and I get mad at the To Do list for being too confining, trying to control me, and I ignore it. But after a while everything starts piling up around me and I start feeling out of control, so I start compiling that To Do list again, glad to have somewhere to put all the loose ends flying around in my brain so I can stop obsessing on every household chore or trip to the store that needs to happen. Before I got sick my husband would get so annoyed with my To Do lists. They were a mile long and he has told me on more than one occasion that I create a list for 1 day that would take any normal person a week to complete, and then I freak out when it does not get done. This behavior has hardly improved post-illness. Well from hangin' out at The Fibromyalgia Fun House I see I am not alone! To Do lists are constantly referenced. Its so important to get this done or that done, and a person that wakes up Lilac easily sacrifices their good feelings to that To Do list as the day slips into Mulberry or heaven forbid Amethyst. Why do we do this to ourselves?

Expectation. Whether it comes from us or others, or some strange warped combination of both, is a killer to the Fibromyalgia patient. We are either selfish or lazy if everyone else's needs are not met so we push ourselves to perform, complete, achieve, dragging that sick person along for a ride they are ill equipped to survive. We are unfocused or indulgent or scattered if we can't manage our daily responsibilities, take care of ALL the things that life has determined critical for survival. All the while we are GIVING OUR HEALTH AWAY. We are lucky that Fibromyalgia is a non-terminal illness that can be managed. And we are cursed because what it takes to manage it is 99% of what we have to give. So how do you marry the two? I sit here looking at my office, an explosion of old computer equipment scattered every which way and a closet stuffed so full of junk my feng shui cringes every time I open the door. The Yorkie peed on the Porkie on our walk this morning so that pushes dog grooming up to the top of the list. Laundry and bills have not taken a vacation and the house is so dusty and carpet needing a vacuum so badly I would not have a blind person over! My toenails resemble Jim Carrey's in Dumb and Dubmer and the Yorkie keeps puking on the carpet 2 seconds after standing on the linoleum. Then there is The Fibromyalgia Crusade, my budding little infant baby that needs a tremendous amount of nurturing and coddling every day to grow into the majestic and towering Oak she is meant to become. A safe haven for us all to rest in the shade of acceptance under.

When I was just out of college and working at the furniture store I attended a sales training seminar that was quite eye opening. It was hosted by this shot-gun of a motivational speaker who had figured out how to engage the customer in a whole new way. Tricking them, throwing them off their game so we as the salespeople had the upper hand. One technique that always stuck with me was to dish right back what they were giving , BUT WITH A SMILE :) Be it doubt, criticism, anger or disinterest give it right back but wrapped up in a sticky sweet little package that held no room for argument. I think we need to call on this approach to start changing the way we are treated, both by others and ourselves. We have to stop taking the criticism and complaints and judgment of others personally and stand strong and believe in ourselves that we are sick, this is real and we are doing the best we can! Last night I jumped off the rebel train and made that To Do list, too many fragments flurrying around my brain. It is long and important and full of time-consuming activities. But for the first time I gave it no time expectation. Yes this is all stuff that needs to get done, but what is most critical for the continued success of my life? I am picking the top two and leaving the rest. It will all be here waiting for me tomorrow.

Thanks for joining,

Saturday, October 23, 2010

Prednisone Vacancy

Okay so as most of you know I suffered from 2 strokes at the end of July caused by yet another "syndrome" (no known cause) that is treatable with steroids and calcium-channel blockers. At least they know how to treat this one! I was started on high doses of Prednisone in the ICU and I have spent the last nearly 3 months manic and crazy out of my mind while the drug keeps the vessels in my brain open and calm, not squeezing open and shut like a kinked garden hose. But that is about the only thing that is calm about me! Oh it has been a very tough drug to deal with. First off my Fibromyalgia pain all but disappeared! That was say the least...and I have truly enjoyed every pain-free moment. I have adopted a yoga routine I practice daily like religion after my morning walk with the pups in hopes that my muscles will be stretched and flexible when the stiffness and pain return. The first week home I worked myself into such a frenzy that my mom and husband put me on 24 hour-do-nothing surveillance because I would not sit still. Then there was the awesome 'Roid-Rage freak out on my husband at the mall. Oh that was not a pretty one. So while my body has been in "recover" mode I have had this false energy pumping through my veins, giving me the illusion of verve and vigor that I do not own.

I have slowly dosed down and with each step regain a little bit more of me back. The pain is returning, the frantic manic is calming down. I am becoming reacquainted with a long lost friend named "oh well" that has been on a very long vacation! I really need that friend to keep life in perspective and am overjoyed she is returning. But my goodness, have the other side-effects of the Prednisone aged me! My immune system was so attacked, my white blood cell count so high that after 4 viral flares in 2 months I was finally put on daily viral suppressive therapy. I have gained a generous gobble of gut weight and my face, as you all have heard me bitch and moan about endlessly, looks like a fleshy round volleyball. I developed a long and dark mustache, have horrible tremor-like-shakes, am having to take a muscle relaxer with breakfast to stay sedate enough to function without spiraling into some hyper-freak-out and a sedative to sleep. I spend each day in an ADD obsessed frenzy, starting four projects at a time but never completing much of anything. Oh if you take the "saving my life" out of the equation the benefits do not outweigh the drawbacks. But that "saving my life" thing is something you cannot put a price tag on so I will slowly continue to titrate down per Dr.'s orders and be grateful for the Fibromyalgia pain that is rearing its ugly head because it means I am that much closer to being off this drug.

And then today the fatigue hit me like a ton of bricks! Ironic because I have not had a sip of coffee since my strokes and today at breakfast I ordered decaff, craving and missing it so bad I figured screw it, I know it still has 30% caffeine, but I want it! I assumed I would be wired but no, I have spent the whole day in a strange Fibro-fog of exhaustion that is quite foreign to me! Familiar yet foreign at the same time. Like a long lost friend that moved to another country and you have forgotten what it feels like to be around that person. I stumbled around the house knocking my extremeities into every imaginable sharp corner or edge and have just been d-r-a-g-g-i-n-g... So another day in the life of this Fibrate comes and goes. New challenges present themselves, new struggles, new opportunities for growth and adaptation, and I will just keep on keepin' on because what else am I going to do?

Thanks for joining,

Friday, October 22, 2010

The Fibromyalgia Fun House Is In Full Swing

11 days ago The Fibromyalgia Fun House birthed herself from my Facebook page and took off running on her own two feet. Since then it has been a wild ride of momentum-building and friend-making! I have to admit we are a pretty wacky bunch! We have navigated privacy issues (bring me the Abacus!) while attracting more and more newbies to the cause. We have laughed ourselves silly as Karen & Teresa (our resident Thelma & Louise) cast characters for their Alice In Wonderland play and Wizard Of Oz production. We have shared symptoms and remedies and side-effect concerns and more than a few times cheered each other up out of some pretty deep darkness. I know I have felt lighter and freer knowing I have a place to call my Fibromyalgia home. I even got the guts to post a Prednisone-volleyball-face picture. I am vain and insecure and you all should know what a stretch that was for me! And I don't know if everyone is still on their best behavior 'cause we are still in the honeymoon phase or what but we seem to be a pretty terrific bunch! I see kindness and laughter and silly sarcasm and support. It carries on 24 hours a day and we are international, worldwide baby! Oh my heart is so full of warm fuzzes! Then I come to find out there is a real interest in The Fibromyalgia Fun House t-shirts. I almost cried on the spot!

I am so blessed to have encountered each and every one of you along the way. I see a true need for this type of a support network and can't imagine what I was doing before it. Oh yeah, not that well! Yes we may bitch and complain and moan and whine but we do have Fibromyalgia after all! More to the point, though, we took the ownership of the pain and mood off ourselves and transferred it to the "Purple Pain Code", and at the end of the day (or rant) always bring it back to the positive. So as I was slathering myself up in organic coconut lotion after my first HOT shower in 4 months (by choice) it hit me like a ton of bricks. We are the Grass-Roots founding members of The Fibromyalgia Crusade! I know this awareness campaign I keep talking about means little to any of you yet because I have had to keep everything secret while I secure my legal protection, but I have been hard at work over here preparing what I believe is going to take Fibromyalgia by storm. We are going to shock the medical community with the shift in our attitudes and demands. We are going to shock our friends and families with the shift in how we treat them and allow them to treat us. We are going to gain attention and validation and stop suffering in silent misery compounded by a complete lack of illness and life management. Why? Because this is so much bigger than any one of us alone. This is the power of momentum that comes from pissed-off patients that are organized and collected and given a voice. So stay with me my Fun House crew, and keep recruiting members. Be patient with this Fibro-girl over here that is still trying to be a good housewife and puppy-mom and patient as well, but know it is only a matter of weeks before we can start jumping up and down on the roofs of imprisonment and bring those babies down!

Thanks for joining,

Thursday, October 21, 2010

Working Retail With Fibromyalgia

I graduated from college with a B.A. in Art, Interior Design. I was good at it and liked it well enough but how I chose it was a bit funny. I had already moved "away" for my second year and attended the community college in the town I wanted to go to University in. I applied for transfer as a junior the following year and had to declare a major. So I grabbed that university catalog and flipped through with a pen and paper ready to jot down every major that 1. Did not include complicated math or science 2. I could work after graduation without having to go to graduate school 3. Seemed interesting and like something I could do. Oh such the overachiever! So it came down to Recreation Management, Interior Design and something else I cannot remember. Interior Design won and that's what I did. I had an "internship" the summer before I graduated back home in Los Angeles and secured a job there upon completion. It was a small outfit, 1 woman with a store-front that did residential design. Neither one of us realized how much training I was going to need and let's just say it did not work out. I then took a job as a retail interior designer at a reputable high-end furniture company. The commission structure was a joke and I made as close to no money as possible but rose in the ranks to consistently one of the top-selling designers every month. After nearly 3 years I left to take a "break" job in cosmetics at a high-end department store. I needed time to figure out what to do with myself, take more computer focused interior design classes and get into commercial design, go back and get my masters, who knew? I needed time to unwind and refocus. But I actually liked cosmetics! It was fun and I learned how to put makeup on and once again became the top sales person nearly overnight. Then my husband was accepted to University in San Francisco and we moved. I was quickly promoted and placed with the same cosmetics line at a major department store downtown. Oh it was a blast! For the first time in my professional life I gave it 100% and excelled in management. There was so much action and activity and stimulation! I worked my butt off and got a few more promotions, winding up as a junior executive before developing CFS and Fibromyalgia. So I quickly climbed down that ladder and went back to counter management. And set out trying to find out what was wrong with me.

Working retail with Fibromyalgia was living hell. Standing on my feet for 8 hours, dealing with the often insane general public, racing around at top speeds to keep up with the traffic demands. It was grueling and painful on my body and brain. I would lie around on my days off trying to figure out what on earth was wrong with me, my legs and feet throbbing, shooting, stabbing. Feeling like I was crushing myself just by standing and like I was going to implode. I could not do the things that were necessary to keep the house together and had to rely on my husband for more and more help. He was unhappy with his job and did not want to live where we lived but could not look for a new one in a new place because my ability to work was so uncertain. I had build a great reputation in San Francisco and rode the coat tails of that through my illness but no one could tell me what was wrong with me or what to do about it. We were quickly racking up debt due to my loss of income and increase in medical bills. I was a mess, falling apart emotionally and physically and my husband was developing major depression not far behind me. I would paint myself up pretty and plaster a smile on my face and force myself through each day at work, then come home and crumble apart all over him. He was just as confused and worried and scared as I was but had to stuff all of his feelings inside because there was only room for 1 nut-job at a time in our house!

I look back on that time now with shame and embarrassment. I know I did the best I could but my selfishness was astounding! Here he was working himself to the bone, miserable and cold in the rain, disappointed he had worked so hard for his degree to wind up in a job he got no stimulation from with a company he did not want to grow with. His young wife was falling apart, sick, relying on him more and more to complete basic household tasks and he had no one to go to. I was too absorbed in my problems to be there for him and he just stuffed it all deep inside and got up every morning and dealt with it. I think that is how a lot of our loved ones do it. The distance between us grows into a valley, long and deep, because we forget that Fibromyalgia is happening to them too. We become so absorbed in our pain, our problems, and eventually they shut down emotionally or leave. NOT to excuse the behavior but I can see with a bit of perspective now and am still amazed he is standing steady by my side. Things have improved for him. I started climbing out of the health-hole after we moved to Arizona and had matured enough to recognize the long-term impact of my sickness on him. I started encouraging him to talk about it and became okay with the fact that there was a part of him that was mad at me for getting sick, and then feeling horribly guilty about being mad at me, poor guy! I became okay with him having feelings about what had happened to me and in turn us. I had processed enough to listen without defensiveness, anger or fear and he slowly unraveled all that wound-up nastiness inside of himself. We have evolved to a point in our marriage where we laugh again, we have fun together and when things get tough, support each other when things get rough. I truly believe after what we have been through we can make it through anything. But it is the exchange that makes it work. Not all me or all him having all our needs met all the time. The amount of sacrifice required to see a marriage into the double digits is insane! But as long as we are both standing here willing to try I will take his craziness and he will  take mine.

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Wednesday, October 20, 2010

I Always Get Caught

I was one of those precocious and intelligent children that was under-challenged, my creativity not channeled in the right direction. Combine that with a fair amount of instability growing up and once puberty hit, rebellion smacked me hard! I became difficult at age 13. I started hanging out with the wrong crowd, smoking, drinking, doing all those things parents fear. I was not the pretty popular girl, the cheerleader type, so I strove to define myself in the extremes. I craved attention, always pushing my way to center stage and that was the way this Leo child obtained it! I got into "heavy metal" music (it was the late '80's after all) and wore a dog collar choke-chain around my neck, setting myself up to become the wild party girl I morphed into as my teenage years progressed. But I was always getting caught! I got caught with pot in junior high and my parents flipped out (Oh I would have beat me silly). They handled it much better than I would have had I been the parent and I was sent to live with my mom. We locked horns for a few years and I eventually moved back to middle-class suburbia with my dad and step-mom in 10th grade. Then it really got interesting... The boyfriend, the drugs...oh I put them through hell! Yet still I kept getting caught. One night I came home to my diary (that knew ALL my deep dark secrets) lying open on the dining room table and spent my 16th birthday grounded. I can only imagine the pain I put them through. I managed to keep myself out of trouble after that, graduating from high school and even moving away to college. Of course I wound up at one of the top ranked party schools in the country, and that reputation was hard-earned and well deserved! But I was responsible enough to keep my grades up, stay away from drugs and and actually graduate. I think my parents were in shock the entire graduation weekend that they had successfully deposited me into adulthood! I started dating my husband right before graduation and threw myself into girlfriend-fiance-wife mode, staying much cleaner than I would have been on my own.

Then pancreatitis hit at age 23. I was overweight and drinking a lot of alcohol and eating horribly! NOT living a good healthy lifestyle. But the real cause of my excruciating pain was not discovered and I lost my appendix during that hospitalization. It took another pancreas attack 6 months later for someone to check my triglycerides and diagnose the genetic malfunction that was causing the problem. They were up to 1200 (should be 150 or under) and the link to pancreatitis was finally diagnosed. So I cleaned up my act a bit, lost weight, got married, moved to San Francisco and became best friends with the bar LITERALLY downstairs. Then at 28 comes the big wallop that almost killed me. The 1st almost killed me. Pancreatitis so severe, my triglycerides at 7,000, the most terrifying experience I had ever been through up to that point. So then I REALLY cleaned up my act. Lost tons of weight, did not touch alcohol for nearly a year, and developed CFS & Fibromyalgia about 6 month later. Since then my life has been a never-ending headache of illness, sickness, another pancreas attack and just when I was re-building my life and getting some semblance of health back I had 2 strokes at the end of July.

Basically every time I veer off the path of goodness I was created to walk something happens to knock me back on it! I view all my health trials and tribulations in similar company with the "trouble" I kept getting into during my youth. Every one of those experiences forced me to re-evaluate and re-assess my life. I have gotten to know myself and accept myself in the deepest ways possible because of the journey I have chosen. It has been a long hard road. I wish it had been easier. I could have made better choices along the way and saved my family and myself so much heartache. But if I had I would not be me! I would be a different woman with different experiences having shaped her into someone else. Someone with different values and ideals and priorities. I watch the friends I grew up with having babies and fabulous careers and living the life we were all told to want. I am happy for them, I truly am, but I have so much faith that I am FINALLY paying attention to the true purpose of MY life and off the road of complicated choices. I am just waiting in joyful anticipation of what is going to happen to me next...

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Tuesday, October 19, 2010

The 5 Pointed Star Of Health

I am on an eternal quest to get to bed on time. In the last month or so I have been popping out of bed between 7:30 and 8 o' clock in the morning so if I don't get my sleep on the back-end I just don't get it! I need 9 solid hours to feel good. I have been through every stage of sleep deprivation and insomnia us Fibrates go through and have fought long and hard to get to the point where my sleep disturbances are minimized and my sleep quality solid. As a night-owl my entire life who could sleep HAPPILY until 10am or later every morning, this is a huge adjustment. What winds up happening is I spend all day feeling like crap and all headachy and manicky and sore throaty and eating bad to satiate those "comfort" feelings my brain's tiredness is calling out for. But I just can't seem to get my act together! I am a busy bee and leave all my chores until my hypocritical-self is shooing my husband off to bed so he does not become sleep deprived. Oh, and I spend way more time on the computer late night than I should. Its just that I have so much fun with y'all!  But the irony is not lost on him, and I hear about it frequently. In fact, last night as I was crawling into bed at 1:30 I saw him glance at the clock and knew I was gonna get it. I devised a clever little scheme in my head...I will tell him he saw the time wrong and it really was 11:30! So when he wakes me up at 4:30 this morning to kiss me goodbye honey-I'm-off-to-work-for-the-day he calls me out. I sleepily mumble my prefabricated hyperbole and he laughs at me and tells me to stop lying to him in my sleep! So much for that one... But as my sleep suffers my diet choices do to, and before you know it I am spiraling into a self-induced flare!

I have come to believe health is a carefully balanced 5-pointed star. It is comprised of a harmony between diet, exercise, stress management, hormonal balance and sleep (thank you Suzanne Somers!). When 1 goes out the others topple over trying to compensate, and that un-equilibrium over long periods of time causes chaos and breeds illness.

DIET: What we put into our bodies directly effects our health and well being. The typical American diet is full of chemicals, preservatives, processed, fake and refined foods. Fruits, vegetables, lean protein & dairy, good fat and whole grains will serve to boost our immune system and keep us not only feeling but looking great. Consuming food that is unprocessed and unrefined by man, the way God made it, and actually cooking it ourselves is extremely beneficial to our health. And a colossal pain in the wazoo, I know, but WE ARE WORTH IT! Start by slowly paying attention to what you are eating. That simple action alone can be eye opening.

EXERCISE: When your doctor is not helping you manage your Fibromyalgia symptoms and tells you to lose weight and exercise more you want to shoot them. I know this first-hand. How am I supposed to exercise when I can barely move? But re-frame your expectations and start slow. Exercise is so much more than an exhaustive trip to the gym! A shuffle to the end of the block will turn into a trip around the block with persistence. Slow and gentle stretching will loosen up those tight and constricted muscles. I have a link on the right to a fabulous book called Yoga For Fibromyalgia that has adapted poses to compensate for our condition. Be gentle with yourself and start slow but remember, use it or lose it baby! 

STRESS MANAGEMENT: By the time Fibromyalgia has consumed us stress levels are through the roof. It becomes a matter of desperate pure survival and there is nothing more stressful than that! Living in a constant state of fight or flight was most likely a huge contributor in getting us here. But if we ever wish to recover from debilitating Fibromyalgia we have to put stress in its proper perspective, learn how to love and value ourselves again. Laugh often and live at a reasonable pace that honors our commitment to respect our bodies as a temple of health, not feeling guilty or undeserving when we find ourselves enjoying what we are doing. Work through and release emotional pain and anger and unforgiveness. You know, all those seemingly frivolous things us Fibrates scoff at because we are a total mess, in constant and pervasive pain and barely hanging on by a ratty un-manicured finger nail. But remember you are worth investing in. You are worth saving!

HORMONAL BALANCE: As we age and develop illnesses hormones go nuts. A knowledgeable doctor is the only place you can even begin to straighten it out. But we can do our part by following the other 4 points so the wonderful machine that is our body can begin to repair itself.

SLEEP: I have saved the best for last. Sleep is by far the most important. I know if I did not sleep I would still be at my sickest, and so many out there cannot sleep! That is the time the machine is turned off and in "repair" mode. Sleep is when we make Growth Hormone. Sleep is when our subconscious filters through our conscious and empties out all the information processed during the day. SLEEP IS ESSENTIAL to restoring a quality of life and getting off the merry-go-round of never ending sickness. If there are 2 things your doctor MUST do for you it is help you manage your pain and sleep. Otherwise you will continue to exist in the downward spiral, deeper and deeper into the Rabbit hole... Hold them accountable. Remember you are the patient and are paying them. Don't be afraid to look for a new doctor if yours is not working with you.

Does Fibromyalgia ever go away? Some say yes, others say no. I personally don't know. But what I do know is that with determination, perserverance, laughter and BALANCE a quality of life can come back that may not be like it was before but is still pretty darn desirable.

Thanks for joining,

Monday, October 18, 2010

Poor Amethyst!

I am so impressed with the swift and passionate acceptance of the "Purple Pain Code"! I have seen it popping up everywhere and think we really needed a way to quickly, easily and succinctly identify how we are feeling, in both mind and body. My husband even overheard someone at work saying she was Mulberry today! Okay, fine, maybe he gave her the link to my blog knowing she has Fibromyalgia so that is a bit of a cheat but still! But I am worried I have hurt Amethyst's feelings...and reputation! I have seen more than a few comment that Amethyst is their birthstone and they don't like the negative connotation or they are going to stop wearing some Amethyst piece of jewelry or another and I feel horrible! I think Amethysts are beautiful gemstones and should still be celebrated and embraced, all the more so because their purple richness corresponds with our Fibromyalgia ribbon color. Look at it as yet another way to show our support and spread awareness. Breast cancer survivors don't stop wearing pink, they appropriate it as a way to remind themselves (and everyone else) how far they have come and what they have been through!

All of that being said, I think our pain code is having a positive impact on our pain! I have been noting Fibrates that were stuck in eternal Amethyst day after day are ascending into Mulberry and even a few into Lilac. Perhaps the power of positive thinking, hope and support are all coming together to help lessen the isolation, frustration and misunderstanding that was serving to compound our pain. Suggestions and concern from those that truly care and understand, knowing that YOU ARE NOT ALONE in this madness has brought a bit of brightness, a light at the end of the tunnel, a glimmer of a way out of the abyss that our lives have become... 

The Fibromyalgia Fun House on Facebook has become a safe-haven where we can share information, pain, solutions, frustrations. More than once I have seen light bulbs popping as we find out symptoms that seemed oh so strange suddenly make sense when you find out WOAH, my Fibro-sister has that too! I want to thank all of you for making this happen. For coming together and sharing who you are, your struggles, your journey with us. I did some major work on The Fibromyalgia Crusade this weekend. Boring legal stuff that has to be in place before we can go public with our demands. The exciting part is almost here! So let's keep growing, keep recruiting as many as you can because the sheer number of patients standing together united and strong is what is going to make all the difference in the world. Blessings to each of you!

Thanks for joining,

Saturday, October 16, 2010

I Am So Sorry I Have Fibromyalgia

I frequently find myself either bitterly acting out or saying this to those around me. Apologizing to those whose lives are affected by my illness, as though it is something I did or like or want or don't suffer horribly from myself. As hard as Fibromyalgia is to manage, the guilt on top of everything else is ridiculous! Do other chronic illness sufferers feel the same way or is this particular to our condition because science and medicine are still so clueless about it? Because there is a massive "blame the patient" stigma attached to Fibromyalgia? I honestly don't know. All I know is that when it comes time to take care of myself because I am in a flare or have not slept or am hurting so bad I simply cannot get up off the sofa I feel guilty. Guilt tinged with absurd anger, and usually jump up to try to perform whatever task is in question. Many 'o many a time I have picked a fight with my husband simply by projecting this onto him. I take my own disappointment in myself, my own frustration at my limitations and get mad at him for treating me like I am letting him down. Poor guy! Still wonder why he puts up with me... He will just stand there helpless as I freak out and slam the dishes out of the dishwasher, into the cupboard or begrudgingly start throwing laundry around, stuffing it into the washer. Sometimes he gets mad back, if he is short tempered already, telling me this is my issue, not his. Other times he shows me compassion and tries to get me to be nicer to myself. Either way it sure sucks to be him right then and there!

Why is it so hard to show myself kindness and self-respect? I know Fibromyalgia is "not in my head", yet my actions sing a different tune! I know how to take care of myself to minimize the symptoms I suffer from on a daily basis, yet feel it frivolous to do so. One of the biggest personality flaws that reared its very ugly head when I first became so ill with CFS & Fibromyalgia was the need for approval to be sick. I needed it everywhere, from everyone! Mom, dad, husband, friends, coworkers, bosses...not to mention doctors and therapists! It was as though if everyone would get together and collectively say "Poor Leah, she is so sick!" I had the permission I was looking for to take care of myself. But there was NO ONE lining up to do that. No one knew what was wrong with me, it was living hell finding a doctor to even take me seriously, let alone people that I crossed paths with on the streets of life.

The emotional growth I went through on this 1 issue alone was massive. I had to really get to the root of why it was so important for everyone to "agree" that I was truly ill. Did this stem from a childhood need for acceptance? Did I need permission to lay down my "type A" evil ways and just be? Was I completely lacking the self-esteem necessary to be nice to myself? All I know is that accepting that Fibromyalgia and Leah had to come to terms with each other was something that happened bit by bit, little by little, inch by inch. I slowly peeled back the layers of emotional weakness that needed so bad and realized that if I was to survive this monstrosity it was only going to happen because it was on my terms. Getting to the point where the opinions and judgment of others regarding my methods of managing myself were of little importance to me took years. It is still something I struggle with, but I can sure say that my need for approval has gone from Amethyst to Lilac and that makes it much easier to take care of me.

Thanks for joining,

Friday, October 15, 2010

Knocked Off My Balance

How many of us can say we take good wholesome care of ourselves? We listen to and respect our bodies, get the rest we need, minimize stress, stay positive and laugh often? Who can say we generally eat a healthy diet, exercise daily, take pride in our appearance and live in the moment? We commit to what we feel comfortable doing and say "No" to the rest without guilt, invest in a few quality relationships and take a moment out here and there to stop and smell the roses? Lemmie guess, NONE OF US??? I sure as hell don't! These are traits that seem frivolous and selfish but are actually extremely essential if you want to live a long life of good quality. Now throw Fibromyalgia into the mix and I have just made a very bad joke... Add that insomnia, constant and pervasive pain and a brain swimming in fog with normal obligations like kids, significant others, friends, family, home and work responsibilities and damn it, I have just overwhelmed myself! But it is even more essential for us Fibrates to practice them than anyone else! We have so much stacked up against us and flying at us and piling down on top of us that if we don't insist on some sort of quality of life, no one else is going to do it for us!

I have lost my balance. My morning walk consisted of a lengthy lecture from my husband booming out of the Droid about how "work obsessed" I have become. He is not getting those few precious hours a night in between work and sleep with me. I am here with you! I make sure he is fed and then sneak off to write and support and campaign my life away while he watches TV. I am staying up way past my bedtime and not getting enough sleep and he can see me slipping into a Fibro-relapse, perhaps his 2nd biggest fear in life (another stroke being the 1st). I am so lucky to have found my passion in life, I am so grateful that I am on the path I was created to walk! I know more than a few have found hope they had lost long ago because they have met up with others that struggle down the same road in life, be it through The Fibromyalgia Fun House or the blog or my Facebook page. On Wednesday night when he has acting class I am so happy I get to go from 9am to 10pm in an uninterrupted obsesso flurry of brainstorming and socializing and planning. So as he is going on and on this morning I feel that "back of the neck" headache sneaking up on me. I know he is right, but I don't want to hear it! I had promised him a few weeks back that once he comes home from work the computer goes off. We even had a plan to implement "cocktail hour", a half-hour each evening to sit in a relaxing place, usually the patio, in the summer the pool, and chat and catch up on our day and just spend that quality time together that so easily gets pushed to the back burner and off the stove of life. We did it once.

The headache and lecture put me in a bad mood all day...and then I fly into a manic fluster of domain names and copyright and trademark applications and never do my yoga, never pretty up for the day, just get grouchier and grouchier as it progresses until I wind up gorging on rosemary potatoes and Raisin Bran for lunch and passing out! Clearly I need some time to regroup. I need to find that balance. I need to remember I am the patient, too! I am so thrilled with the success of my blog and The Fibromyalgia Fun House and amazed at how fast it is growing...and how badly it was needed. I knew I had never found anything like it, guess it never crossed my mind no one else had either! But I need to set my priorities straight, put my husband before my work and my health before all else. I must figure out a way to be successful with all of my endeavors. And I need to get back on the same team as my husband, for without his support I am dead before I even begin.

Thanks for joining,

Thursday, October 14, 2010

Welcome To The Fibromyalgia Fun House

Two days ago Leah Tyler's Fibro-Fun House Facebook page moved out. She was taking on a life of her own and needed her own space. There are benefits to a "page" or "group" that my readers and Fun House friends were inquiring about. I still don't know the difference (or what I signed up for), remember, give me the abacus! But mainly it boiled down to more privacy. The conversations and comments are more self-contained than those on a "friends" page. Most don't want to wear their Fibromyalgia battered heart on their sleeve for all their friends and family to see and needed a more private forum to get a deeper level of support. So the Fibro-Fun House became "The Fibromyalgia Fun House" and has been on a momentum building rampage since Tuesday night! Once again it has been met with an overwhelmingly positive response. I am having a blast meeting all sorts of new folks and thrilled to see my existing friends coming over as well. The newbies seem to be a bit taken aback at first. We are a wacky bunch! We believe in the right to bitch and moan and complain, and then laugh our asses off at something funny or stupid or sad or pathetic that only "we" get. We are an honest bunch, nice and supportive yet still sarcastic and sardonic or even a little naughty at times. But the greatest attribute I keep finding is we are kind to each other. We offer support, listen, give advice or simply say with all the honesty in the world, "I am so sorry and totally understand where you are coming from." Sometimes hearing that is all you need to gain a little pep to get through that next tribulation living with Fibromyalgia rolls at you.

We are on a mission to change the face of living with Fibromyalgia. The campaign is called "The Fibromyalgia Crusade" and yours truly is working hard on sliding all the pieces into place before publicly revealing it in detail. It is a patient-united awareness based campaign whose sole purpose and mission is to get Fibromyalgia recognized as a real medical condition while science and medicine work to figure out the how's, why's and what to do's about it. We are demanding respect to stop being treating like we are lazy, crazy, wimpy or junkies. We are mad as hell at how we have been backed further and further into a corner trying to defend ourselves and our right to be sick with something no one understands. We are sick and tired of being treated poorly by the medical community and are not going to stop until all 6 million of us stand up nationwide and collectively stomp our foot at the madness, if that's what it takes! So welcome all my new friends, glad you found us to my old, and get ready for the storm a bunch of pissed off Fibrates are going to bring down around those that have dismissed us and degraded us and demeaned us for entirely too long!

Thanks for joining,

Wednesday, October 13, 2010

The Clinic That Knew More Than I Did

Let's go back to fall of 2006. I had just experienced a complete emotional breakdown from pushing myself for the past year well beyond any human breaking point. I tried to live and work like a normal person while infected with Chronic Fatigue Syndrome and my mind and body had finally given out, letting Fibromyalgia take over. I was sitting at home, disabled, unable to use my right hand or arm, in writhing, aching, constant pain, sleepless, anxiety shooting to the stars, not able to remember anything that I was doing from one minute to the next, wishing I could just die, incapable of leaving my house for more that 20 minutes at a time due to exhaustive fatigue, frantic with stress about my future...hell, I am surprised I could even remember how to breathe, that's what a mess I was! You all know what I am talking about, most of you have been there (or are there, bless your hearts!). Thankfully California was one of a few states that offered State Disability Insurance. I secured a month off work paid at a somewhat comparable rate to what I was currently earning because of the executive position I had the year before but had since given up. They base it off some strange formula and I lucked out. But as that month counted down and I regained some mental balance I was continuing to decline physically. It had been ruled, by diagnosis of exclusion, CFS & Fibromyalgia, but there was little to do about it. I would sit at the computer, desperately searching for some answers, a solution, a network, some support. I read the book From Fatigued To Fantastic at the recommendation of my chiropractor and it all made so much sense, seemed to fit my symptoms to a T. Clearly an exceptional doctor was needed to even begin to treat these conditions. But I did not know where to find a doctor like this!  The internet was useless, support groups were hard to find and a hassle to get to and there was so much conflicting garbage out there I could not tell what was real and what was a carefully disguised scam.

All I knew is that I had to figure out what was wrong with me and how to get better. There was something serious happening to my body and despite the pathetic brush-off of the medical community I was not willing to accept this was "all in my head" or symptoms of depression. For crying out loud folks, I could not grip a pen and write! That is not depression, that is something physically wrong! My research kept bringing me back to The Fibromyalgia & Fatigue Center. They are a chain of specialty clinics around the country that the author of From Fatigued To Fantastic, Dr. Jacob Teitelbaum, either endorsed or worked with at the time, I cannot remember which. He was a patient of both illnesses himself and had found all sorts of ways to test and treat the root causes, not just mask the symptoms with pharmaceuticals. Then my initial month on disability came to an end and I had to get it extended, for I was still as sick as a dog and there was no way on God's green earth I was able to go back to work. I was seeing a Psychiatrist and Therapist weekly I was such a mess, and that was just the emotional part! But my doctor did not understand why I still needed to be out of work because I was depressed. And this lit the fire under my ass to figure out how to get better or run the risk of watching the life my husband and I had been working so hard for flush down the toilet.

I picked the Las Vegas location because I had family to stay with there, set up an appointment, arranged for my mom to assist me and off I went. It was amazing! It was truly the first time I met a doctor that knew more about my ailments than I did! They did a thorough physical and extensive oral exam. They took 31 vials of blood! It was intense and exhaustive and extremely expensive. The MD part of it was just a small factor, it was the supplements! But my body was under such attack and was so depleted they were badly needed to build me back up. My adrenals were shot, thyroid depressed, testosterone non-existent and I had Human Growth Hormone levels of an 83 year old at age 29! I returned for a few follow-up appointments and did a few phone appointments as well. I improved, but there was no magic wand being waved and I was still disabled even though I could leave the house for longer amounts of time now. Eventually they started testing for viruses and bacterial infections and BINGO! That's what Leah had! I went on some heavy-duty drugs to flip the balance from virus on top of immune system to immune system squashing virus and recovered from CFS to the point that if I take care of myself I am in "remission". But one of the nasty little buggers had infected my central nervous system and lived there for so long it had inflicted permanent nerve damage and the Fibromyalgia was here to stay. I am so grateful for The Fibromyalgia & Fatigue Center, the family I had to stay with there, my mom for all her assistance and the credit card I was able to put it all on. Since I have become a "professional patient" (4 pancreatitis, CFS, Fibro & 2 strokes by the age of 33 qualify me for that title) I have learned a lot about health and wellness. I buy the supplements I need now at a fraction of the cost and know more than I ever thought possible about how to maintain a healthy balance in life. A lot of questions keep popping up about The Fibromyalgia & Fatigue Center, and for me it was more than worth it. I just would not have bought all my supplements from them had I known any better. But the doctor was amazing, I did recover significantly and was able to return to work and live a life of much better quality than I thought possible given my original prognosis.

Thanks for joining,

Tuesday, October 12, 2010

You Are What You Eat

The topic of diet has been coming up a lot lately, and the connection between what we eat affecting how we feel. As you all have gathered by now I embrace a holistic approach to wellness. Holistic as defined by Merriam-Webster Dictionary is "relating to or concerned with wholes or with complete systems rather than with the analysis of, treatment of, or dissection into parts". I view my body as a complete entity, with each symptom, pain or issue connected to the others. There is no question in my mind that processed, preservative filled, altered, fake and high fat and calorie foods make me feel bad. My symptoms will flare after a few meals out and let's not even talk about fast-food...road trips are much less fun when the restaurant tour includes salads instead of french fries! It has taken me many years and much trial and error but I have found an eating theory that works for me: If God made it, I will eat it. If man altered it, I try to limit it. Or at least indulge for emotional reasons, not practical ones, for crying out loud! When I open my full refrigerator there is never anything "to eat" unless I have already taken the nutritious, raw ingredients and crafted a dish. Or I want some cottage cheese or a hard boiled egg. It is extremely labor intensive and frequently annoying, always having to plan ahead, but it is something so fundamental to the management of my Fibromyalgia I have finally accepted that a big part of how I consider myself "managed" is because of my diet.

When I was at my sickest and disabled, having lost the use of my right arm and hand and unable to cook, dinner (along with everything else) fell to my husband. I was just a heap of emotional chaos slumped over on the couch, moaning and whining and complaining incessantly. After working his 10 hour days and then hitting the gym his version of dinner consisted of take-out. Burgers one night, burritos the next...and the pounds started packing on both of us. It did not take me long to figure out this system was not working, so we joined Nutri-System. Healthy as far as no preservatives it is NOT but it offered ease and calorie control and we kept at it until looking at one more package of freeze dried hamburger made me want to hurl the reconstituted scrambled eggs I had for breakfast all over the room. I researched nutrition extensively, constantly hearing how this person had recovered from Fibromyalgia on a gluten-free diet or gave up wheat and got better, how for that person it was bananas that were making them sick, or milk or corn. I tried it all. I never was "food allergy" tested but eliminated enough things from my diet for significant amounts of time that I knew the answer was not that simple for me.

When I became ill with CFS and Fibromyalgia an intense journey of self-discovery unfolded before me. I became disillusioned with modern medicine and the limitations it placed on its mastery of the absolute. How can something still evolving, still discovering, hell, something called the "practice" of medicine be so pompous as to discredit what it cannot yet prove? So I opened myself up to alternative methods as a means of survival and adopted a more holistic approach to living. I also came to believe in some pretty radical and off-the-wall truths that exist between man and nature. Our technology has grown so much quicker than we have biologically evolved and we are at the time and place in history where they could not be more at odds. American's have higher rates of obesity while consuming less fat. All these fat-free, sugar-free, calorie-free foods scare me, and I grew up on them! Exactly what are you eating if there is nothing in there? CHEMICALS! Chemicals that sit in your body forever, your organs at a loss as to what to do with them, no way to process them or get rid of them, and toxicity builds and builds until illness is born. So if you ask me what I eat it is simple. I eat a lot of vegetables, whole grains, lean protein and dairy, good fats and limited amounts of real sugar. I am in no way professing to be perfect, it would be a little scary if I was. Yes it is a complete pain in the wazoo, but if you start slow by adding more veggies into your diet and cutting out the processed and fast-food you may discover you feel a bit better, less stiff, less inflamed and more energized, too.

Thanks for joining,

Monday, October 11, 2010

Strong In A Storm Of Criticism

One thing that is very important to me is the attitude of this blog remain positive. It is critical for us to support each other with grace and dignity, show respect even if we don't necessarily agree, not compete for who has it harder or suffers more, belittle those that are more fortunate in life or illness and judge those that do it differently or come from a place we don't understand. We face enough adversity in life. The last place we need hindrance is in a place of supposed support and acceptance. I am amazed we have grown as much as we have and our positivity and integrity have remained intact! I am so impressed with the quality of people my blog and The Fibro Fun House (nothing more exciting than my Facebook page) have attracted. I feel such a deep kinship with so many of you. But apparently something I wrote a few days back struck a strong enough nerve to warrant some critical feedback. Wow was that hard for me to take! My initial reaction was, "Screw you, don't read my freakin' blog then!". But I calmed down a bit and re-read the comments enough times to gain an appreciation for the place my readers were coming from.

I am well aware that I am going to encounter PLENTY of criticism and resistance as The Fibromyalgia Crusade grows and I enter very public forums with our message, our plea, to be taken seriously and treated humanely. But knowing and feeling are two very different levels of being! This was actually a very important experience for me to walk through. A very mild version of what pugnacity and attack will inevitably come, and most likely come hard and fast, mean and rough. It had to do with age of illness onset. Some are so young, born with Fibromyalgia, always knowing it. Others pick it up at various stages in life, both male and female, teens, 20's, 30's, 40's, 50's, 60's, 70's, get my drift. I had written that being in my late 20's when I got sick was cause for me to fight fight fight with all my might to manage it because I had my life ahead of me. In writing this I pissed off a whole group that had a different experience than I did, those that got it when they were older or have had it much longer! Wow, so not my intention! I am truly sorry if I came off as insensitive. I was just blogging my personal experience, all I can speak to. Conversely I have also heard from readers that doubt they would have fought as hard had they been younger when they got sick, not knowing any better or having the personal strength to do so, not having as much to lose. The Fibromyalgia experience is SO subjective, so individual, deeply personal!

I had just sat down at my computer this morning, determined to start the week on a good note even though my Lilac was being morphed into a Mulberry outline. But once I read those comments I got all wigged out at the critical feedback. I started feeling flushed and my throat scratchy and my head started aching. I am still immune suppressed on Prednisone and any pain in my head freaks me out about another stroke, so here I sat deflated, confused, hurt. I have given so much of myself to these pages. I have revealed my true heart and soul and received such unconditional acceptance...until now. I felt picked on, attacked for not being perfect. For blogging about my experience and not considering every other position any person that could possibly be reading it held. A wee bit oversensitive, perhaps? Well yes, Prednisone can do that to a girl! But this has actually given me an awesome opportunity to establish how I receive critical feedback going forward and has been an amazing cause for personal growth. For this, my dear readers that felt inclined to speak their minds, I thank you. You stretched me in a way I did not want to stretch, but needed to. As my auntie said to me once as I sat hidden in the bathroom crying after being insulted at a family gathering, "My dear you have very pretty skin, but you need to thicken it!".

Thanks for joining,

Saturday, October 9, 2010

Find Your Way Back To Health

As the readership of this blog grows and the Fibro-Fun House (my Facebook page) expands I am getting another round of fellow Fibrates asking me, "How did you get better?". For some reason lots of you have been turned on to my strange brand of what I call Keepin' It Real Optimism, and for this I am so grateful! I am glad to share my journey and learn from you. I am thrilled to see you networking with each other and forming friendships and support amongst yourselves as well. There are so many of us with bloody and bruised heads from banging them up against the wall of living with Fibromyalgia, and I think more than a few have found a place to come where they can stop beating themselves up and relish in the fact that there are SO many others in the same situation. If I had a nickle for every time I have seen "I don't feel so alone now" I would be a wealthy woman! By the nature of this illness and how it fits into the world of modern medicine we have been made to feel very isolated. I believe here we have found a community where not only are we believed and accepted, WE DON'T EVEN HAVE TO EXPLAIN OURSELVES! Its phenomenal! To find a group that truly understands the trials and tribulations of living in Fibro-hell is simply a relief. Strong support is key in reclaiming your life and we get it where we can find it...and if Facebook is where we have found it than so be it!

Oh what a delicate symmetry health is! I have spent years learning about my own body, what works, what does not, what matters and what makes a difference. I have uncovered what CFS & Fibromyalgia really and truly are IN ME and have extensively researched and read and formed my own opinions and conclusions about health and wellness in general. Unfortunately I feel we are being sold a bill of goods by modern medicine. Not maliciously, and don't get me wrong, without it I would be dead at least 5 times (no exaggeration) by now, but when it comes to day-in-day-out quality of life they are really missing the boat! I argue with my best friend about this constantly. She is a very healthy person and goes to the doctor a few times a year and has never had a problem with her health. So when I go off on my rants about the necessity of a small amount of unprotected sun exposure daily necessary for Vitamin D absorption to prevent diseases, how this "5 small meals a day" crap is a way of compensating for the horribly processed and preservative filled diets we consume or she watches me take my buckets of supplements when we go out to dinner, we tend to not agree!

But if you want to know how I "got better" (I actually call it "managed", better means it is over and Fibromyalgia for Leah is far from over) I set out on a quest to find health and have not stopped. I tried endless medications and took every nutritional supplement under the sun. I saw specialists to treat the infections in my body that had infected my central nervous system. I sought out alternative therapies like acupuncture and gave up my career and worked very hard, and still continue to, in order to keep life's balance. I watch my diet and exercise and manage my stress and get lots of sleep each night. I got "managed" because I refused to have it any other way. But it has flipped my reality on its head. What worked for me is most likely not what will work for you, we are all different. There is no magic pill that is going to take this away. But with determination and perseverance and persistence you can find a way to start climbing out of that well of misery and pain that threatens to engulf you day in and day out. But only if you insist on it.

Thanks for joining,

Friday, October 8, 2010

Remove Yourself From The Illness

A condition like Fibromyalgia is all consuming. People that don't have it just don't understand. When every inch of your body is screaming in pain and you can't even sleep to escape it, yet walk around in a fatigue-induced fog trying to function, it is damn near impossible to distinguish where you end and Fibromyalgia begins. One of my hardest emotional hurdles in managing Fibromyalgia/CFS was separating myself from the illness. In the beginning I would chant over and over to myself, "I have Fibromyalgia, Fibromyalgia is not me!" I had to draw a line between us, for it was quite possibly on its way to overtaking me, the very essence of me, it is that strong. When I would wake up in the morning after working retail the day before I would dread those short steps to the bathroom because I simply felt like I was going to break I hurt so bad. It was very difficult to think about anything else but the pulsing, coursing pain. When I would lie on the sofa watching the dust and dishes and laundry pile up around me, eating preservative filled Nutri-System because I had lost the use of my right hand and arm and could not cook, it was extremely difficult to draw the distinction.

But I was insistent. I refused to become disabled at 28 and watch my life fold in on itself, crumble down around me. Maybe if this had hit me a few decades later I would not have fought so hard, but it came when it did, at a point in my life where I was just embarking on my life, and after a few months of intense wallowing in self-pity I picked myself up by the bootstraps and set out on a quest to get better. Doctor after doctor would tell me there was nothing wrong. I found a great resident at UCSF who worked with me extensively to rule out every other condition imaginable. I did hours of research and would bring him in lists of ailments with similar symptoms and we would comb through it, disease after disease. Finally after about a year and dozens of tests he could only conclude I had CFS, still in the very early stages of Fibromyalgia and not yet diagnosable. I saw an endocrinologist for a second opinion and she diagnosed CFS and Fibromyalgia, already picking up on the loss of my right hand and arm as a Fibromyalgia symptom. So there I was. No treatment, no cure, no understanding of what I had from modern medicine. Just pain pills, pain pills with a side of major attitude. I guess some people like mood swings, constipation and nausea but not this chica! No, addiction to pain pills was never my issue (I have plenty of others, don't worry) but I did become addicted to not being in pain. It was too much to bear. I had to work. I had to function as some sort of wife. My responsibilities did not just go away because I was sick! So push push push myself into full-blown Fibromyalgia I did!

Eventually I turned to alternative medicine, combined with modern medicine, and have spent the last 4 years in various stages of ascent and decent toward improved health. I have educated myself as to the truths of our modern lifestyle and how it is so at odds with our biology. We are annihilating ourselves with our chemical filled diets and sedimentary lifestyle, our lack of sleep and abundance of stress! The typical American existence is the complete opposite of health and wellness, it is not even funny. Just yesterday I went to the "regular" grocery store (usually shopping at the health food store and Trader Joe's) and was appalled at nearly every label I read. French Onion Soup mix has MSG in it! MSG! But I digress... All the while I had to keep drawing that firm line between Fibromyalgia and Leah. We were not one and the same! It kept getting blurred, Fibromyalgia trying to erase it. But I would come along right behind it and draw it again, deeper and deeper into the ground until there was a divot between us that could not be repaired. We were in a never-ending circle of a battle, and slowly but surely I was the victor. After rounds of meds and side-effects from hell, working less and less until "Domestic Goddess" is now my claimed profession, buckets of supplements and hours upon hours of sleep I now consider Fibromyalgia 3rd or 4th place in my life. And I can finally say with all the confidence in the world, "I have Fibromyalgia, Fibromyalgia is not me".

Thanks for joining,

Thursday, October 7, 2010

The Color Purple

As most of us are well acquainted, the color of our support ribbon is purple. Purple is a traditional color of royalty, the color of the Crown Chakra which is linked to the crown of the head, the nervous system, and the brain (okay can someone please say Fibromyalgia!), and is representative of pure thought. The Purple Heart represents courage in the military and pride in Christianity, just to name a few of its associations. Oh purple has assumed an enlightened and vast embodiment throughout history. The study of purple in psychology has been shown to uplift, calm the mind and nerves (here we go with the Fibromyalgia again), offer a sense of spirituality and encourage creativity. "Purple embodies the balance of red's stimulation and blue's calm... With a sense of mystic and royal qualities, purple is a color often well liked by very creative or eccentric types."* We are in very good company with the color purple!

Today a Facebook Fibro-sister mused she wished we had a code to represent how we are feeling. She is sick of complaining all the time but still knows how important it is to communicate her pain to those that truly understand, her support network. I thought this was an excellent idea and tried to come up with a "code", which inspired all sorts of hilarious commenting, acceptance and criticism at the Fibro-Fun House (my Facebook page for those that have not joined it, and should!). I figured going off our designated ribbon color would give us an anchor, and allowed my mind to absorb the color purple in its infinite number of shades, tones and hues. As I traveled down this imaginative exercise I felt the lighter the color the lighter the symptoms, and the deeper the color the more raging the pain. So I painted a pretty little picture in my mind of Fibromyalgia as viewed through a purple kaleidoscope. Lilac starts out soft and light, and represents a pretty darn good day. Mulberry deepens and intensifies slightly and marks the middle of the road, not great, yet not horrible either. Amethyst finished the journey with all-consuming PAIN FROM HELL, one of the deepest shades of purple. So I posted my idea and have spent the better part of the day cracking-up over the reaction it has been getting. I also LOVED knowing how my fellow-fibrates were doing, many more Lilac's were out there than I realized! And for the Mulberry's and Amethyst's it was helpful to know how you were feeling because so much of the time we just shut up about it, stuck in an eternal Groundhog Day of repetitive complaining even we get sick and tired of hearing ourselves grumble about.

Quite a few hated my color choices! "Too complicated...I won't spell them right...I can't remember that...I have Fibro-fog!" And I hear you, I do, but there is something off-beat, individual and funny about comparing the wreckage of our lives from this illness to flowers and gemstones. It somehow removes the ownership of the pain and places it in another dimension of the reality of living with Fibromyalgia. So for those that are willing, interested or care I would love to try this out for a week or so. Come to the Fibro-Fun House and let us know how you are feeling for the day. Let us know if you woke up Amethyst (all-consuming) and have sailed into a light Mulberry (middle-of-the-road) because something is working for you. Let us know if you started the day out Lilac (light) and have spiraled into an Amethyst tinged Mulberry because today is simply sucking. Try it out! See if it helps to take some of the pressure off, some of the misery, some of the ownership of the pain. See if it helps to have a way to communicate to your fellow Fibrates, your true comprehenders, without having to spell out the literal misery we desperately bang our heads against the wall for the non-Fibro's in our lives to doubtlessly comprehend.

Thanks for joining,

*Information provided by:

Wednesday, October 6, 2010

Full Speed Ahead

I am not liking today. I have a headache and blurred vision, very Fibro-fogged, and am quickly spiraling into a very bad mood. This usually means a flare-up is on its way to my house! Woo Hoo! My poor immune system is really fighting Prednisone, but some days it seems like it is not winning. Our best friends are getting married in Florida next month and I cannot possibly see a way to go. We simply do not have the money. Where am I pulling $1000 out of to fly, eat and sleep? My ass? My husband is back on his "work every Saturday" kick again but is totally falling apart so I don't see how that is possible, either. He is already exhausted and barely hanging on. What is more concerning is he is determined to push himself to the brink. Exactly what I did when I first got sick. Back in 2004 & 2005 I knew my life was too much for me but I ignored every warning sign and barreled full-speed ahead, winding up crashing and burning in an exhausted heap of sickness. Here I sit 6 years later, my life completely altered forever because I was determined to live up to some expectation our modern society has convinced us is important but is actually destroying us! Now he is doing the same thing...I see it so clearly! Almost hoping to hit that wall, that stopping point because then he will be FORCED, have no choice but to fold, break down, end the madness. How many of you out there recognize this in yourself? How many of you pushed the pre-Fibromyalgia you to the brink of exhaustion, sanity and destruction until your body just could not take it anymore and said ENOUGH? Now you are too sick to move and hurt all over and can't think clearly and cannot sleep. How many of you disrespected yourself in your attempt to fulfill your obligations and are paying for it years and years later? I know I am.

I want my life back! I want to invite my father and his girlfriend and her kids to town for Thanksgiving. I want to go to this wedding SO badly. The thought of missing it breaks my heart! They are our best friends, Godparents to the Yorkie. I am vacillating between serving Jury Duty in November as scheduled or postponing it until January, after the holidays. But in January will I be back in class, resuming my goal of learning Spanish? So should I just do it now and get it over with? Will I even be back in school in January? What does my future hold? Oh having such little control is making me crazy with madness... I feel like an airplane put on a permanent holding pattern, never allowed to execute the landing, just circling around and around in the air like some giant vulture. Waiting for the word, the sign that it is okay to begin again. See I was almost there, beginning my life again, resuming some normal activities and expectations and setting goals and then the strokes hit at the end of July and knocked me all the way back to START on the game board of life.

So I am taking control, but in the way the new me knows how. The woman that has learned through her trials and experiences how high the cost of living crazy can be. I called my husband and informed him over my dead body will he start working every Saturday again. I absolutely will not sit here and watch him do to himself what I did to myself. He is not allowed to self-destruct. NO NO NO NO! I think I scared him a bit with my intensity, my authority over our future (but it did garner me a trip to Yogurtland on his way home from work). I told him what matters is the 4 of us (the 2 puppies for those that are new), and we are putting ourselves first. We are going to sit right here and focus on our lives, no matter how sad we are to miss the wedding or not have family come for Thanksgiving or any other activity that represents living normal. We are not quite there yet. I must focus on my writing, he must focus on his acting and we must focus on our lives. We are in a phase of retreat, of rebuilding what has been taken out in the storm of Fibromyalgia and CFS. I have faith that one day we will reach normal again, but for now I am resting assured that we will not be living life full speed ahead just yet, and that is perfectly okay.

Thanks for joining,

Tuesday, October 5, 2010

Breast Cancer Awareness America

As we all know October brings about a massive awareness and support to breast cancer. Pink ribbons start popping up everywhere, TV ads and talk shows feature it, shops and stores sell products benefiting it, hell even the NFL goes pink! This past Sunday as I sat watching the Giants beat the Bears (thank you boys for winning!) I noted each pink glove and pink ribbon plastered all over that playing field and stadium. It is awesome that such support, true nationwide support, is shown for an awful disease that's had to fight its way to recognition and awareness. Breast cancer patients were treated horribly before 1998, when The Federal Breast Reconstruction Law aka The Women's Health Act * was passed. Insurance companies would pay only for complete mastectomy's, leaving a flat scar in the place of a breast with the healthy breast still intact! I recently received a notice in the mail from my insurance company summarizing their benefits regarding breast cancer and the right to have reconstruction and the other non-cancer breast reconstructed as well. I showed it to my husband and said, "Read this. Look at how horrible women were treated. This is now Federal Law. They had to fight for this." He glanced at it and looked at me in shock. He could not believe women were left breastless and unbalanced. He could not imagine a world where that would fly...

We are at the beginning of a similar fight, my Fibro-friends. We are fighting for recognition and awareness of an illness that is mysterious, debilitating and misunderstood. We are fighting to be taken seriously and not dismissed as lazy, crazy or wimpy. We are fighting and we will win when we all come together and demand nothing less. But we are not there yet, oh so not even close. We are a defeated little bunch that have retreated into ourselves as a major coping mechanism. We have been beaten down and abused emotionally and mentally because we happened to get an illness that is not established. We lack confidence in ourselves, our diagnosis, the reality of what we live with day in and day out. We doubt ourselves, blame ourselves, wallow in endless troughs of guilt. We push ourselves well past sick in an attempt to prove to the world at large what we are dealing with is "real". Then we spiral into a whole other level of misery beyond that. I know this only too well, for I did it myself. I firmly believe "early detection" is not just for breast cancer, but Fibromyalgia as well! The sooner a person is diagnosed and begins working with their competent and compassionate doctor on managing it the less chance it has to overtake your life. 

We are in the "building the army" phase of The Fibromyalgia Crusade. Fibromyalgia patients need to find their fight! We need the anger, the passion, the unrelenting insistence that things have got to change or we have no chance of ever changing the reality of living with this illness. I hear time and time again how defeated my readers are. So doubted, so questioned. We must rally together and build each other up. We must use each other to feel stronger, lean on when times are tough, a shoulder to cry on is needed or someone to scream to (softly of course, can't use up all that energy at once!) about how awful you feel or have been treated or horribly your life is falling apart. Whatever way we do it, we have got to get mad, get strong and get ready to march to the battle line. Breast cancer survivors did not do it by feeling sorry for themselves or wallowing in guilt for getting sick or listen to those in their life that told them to deal with having just 1 breast. They did it with passion, and they did it together. And the beauty is, they did it, and we can too.

Thanks for joining,

*Information in this blog provided by

Monday, October 4, 2010

Changing That Point Of View

It is one thing to live in constant writhing pain day in and day out, having no clue what you are doing half the time and unable to sleep and escape it all, yet experiencing unrelenting fatigue. But let's be honest here, Fibromyalgia is not as bad as it gets. Yes it is awful, but it is not terminal, will not turn you into a quadriplegic, does not require you to be bathed and bathroomed by a caretaker, hooked up to machines for your every breath... Oh yes there are certainly worse physical ailments out there. But what I see as the BIGGEST challenge with Fibromyalgia is the mental and emotional aspect of this illness. Figuratively close your eyes and follow me for a second. One day or week or illness or trauma you wake up and hurt all over in a way you have never hurt before, and that pain does not go away. You go to the doctor and they run their standard battery of tests. You return for your follow-up and although you still feel awful, a bit worse in fact, your tests all came back negative. So your doctor orders some imaging and other tests to dig a little deeper. You return for that follow-up and again, all negative. Your doctor pokes and prods you a bit and hits a lot of tender points that scream at the slightest touch. Then they look you square in the eye and inform you what you have is called Fibromyalgia. Its cause unknown, it is a neurological condition and what you are actually experiencing is an increased sensation of pain stemming from the central nervous system. It is not terminal, although if left untreated can become quite debilitating, and it is not degenerative meaning there is no breakdown of the muscles or joints or ligaments, it just feels like there is. They go over a few prescription options and the potential side-effects and together you decide where to start in "managing" this illness, syndrome they are calling it. Your doctor explains that Fibromyalgia is a mysterious condition and not all treatments work for all patients and there may be a trial and error period before the right combination to manage you is found. They give you medication to help you sleep and recommend stretching and walking and keeping your weight in a healthy range. They tell you to get up to 9 hours of sleep a night and eat a balanced diet and severely warn you to limit your stress. You know, all those things we should be doing anyway. They give you a pamphlet titled "You Have Fibromyalgia" to take home to your  loved ones and offer assistance in managing your job until you can manage your Fibromyalgia. You go home and show your significant's, and they are overjoyed you have a diagnosis and a starting point to managing this illness.  Friends and family show compassion and offer to help out in anyway they can.

Okay now open your eyes. No need to pinch know you are dreaming! But what I have just described above is what Fibromyalgia would be like if the emotion were removed. If only it was not a "blame the patient" condition. From doctors to spouses to parents to employers, very few take Fibromyalgia seriously. We as a patient body are emotionally abused on top of suffering from a painful condition that makes normal activities darn near impossible. And the longer it goes unmanaged the worse it gets, the meaner people get and the more judgmental they become. So we fall slowly down that rabbit-hole, watching our life pass us by while disintegrating physically and breaking down emotionally, too sick to do anything about it. Then The Fibromyalgia Life Cycle (previous blog) kicks in and how bad it gets is dependent on how hard you fight and compassionate those you have placed in your inner circle are. THIS IS MADNESS, and it has got to stop now!

One of many things my journey through life has taught me is that all I can really control is how I react to a situation. I cannot make other people behave or think or act the way I want them to, I can simply choose to respond to them differently. I believe we need to apply this philosophy to Fibromyalgia. See we are injured, tired, hungry and scared little vagabonds backed up into a corner, defensive, shivering and hissing with our claws out ready to fight. We are so used to being abused we have allowed naysayers and doubters to prevail and spread disbelief, even in our own minds, making us desperate to be understood. But take a second and a few deep breaths and exhale out all your pain and anguish from how you have been treated since you got Fibromyalgia. Release the anger and frustration and hurt and betrayal that has come from those closest to you. Clear your mind of all that negative emotion and connect with only yourself. You know that what you are experiencing is real. You know your pain is astounding and you are not lazy or crazy or seeking attention or trying to "get out" of having to live life. Now exist confident in the reality of your life as you know it. You are one sick person, but you are one sick person who is no longer going to allow themselves to be abused on top of everything else! You have the power to flip your thinking and believe in yourself and respond from that place of complete security and knowledge in the absolute truth. Build a pillar of strength around yourself that NO ONE can penetrate. Now go live it! Take the emotion out of this illness! With each attack explain that you are doing the best you can and when you are criticized or blamed for not cooking dinner or cleaning the house or making it to work that day serenely respond that you are sick and sorry but that is just the way it is. Don't own their judgment, and then change the subject. Stop feeling "guilty" or like this is in anyway your "fault". When you go to the doctor and are dismissed or told to "get over it, there is nothing wrong with you" calmly thank them for their time and move on to the next one. Surround yourself with those that believe in you, even if you have to find a whole new group to surround yourself with. In other words, stop letting everyone else rule your life! Fibromyalgia already has its nasty greasy little fingers all over you, stop letting its cousins skepticism, ignorance and dubiety at you too!

Thanks for joining,