Friday, April 29, 2011

I Am Sick To My Stomach

Actually, I feel that I have been punched in the gut. I am really second guessing my choices. What I have spent nearly the last year of my life doing. To me this is so basic, so simple. But I guess my communication methods lack emphasis or something...because a hailstorm of shit is pelting down around me and I have nowhere to duck and cover. My little Fun House has been in major disarray. It was hijacked from a place of hope and inspiration and dropped off as one of confusion and chaos. It seemed to happen overnight, but I am sure it took quite a few months from when the seeds were planted for the fruits to have sprouted. It was not one person so much as a collective blanket settling around us. So I have been posting notes and requests and rules and regulations and guidelines and really just a bunch of darn pleas to...please just be pleasant. Don't be loud or obnoxious. Don't be bossy or controlling. Come in and observe, check out the environment and pay attention to the established order. Don't come in and define its purpose. This is its purpose. People go to that page because they like reading my blog. If you don't like reading my blog I can't see why you wold be there? But all my efforts have done is confuse everyone and scare people off.

And a private exchange with a longtime friend yesterday made me realize what has happened. A good portion of the folks that started out with me last September are doing leaps and bounds better. No Fibromyalgia is not gone, but it has receded out of the primary spot light. Life is a little bit more livable, symptoms have ceased to define every moment of every hour of every day. As I carried on and on about how life can be better, a certain quality can be restored if you took responsibility and found a doctor to actually help you and find some friends that have Fibro to talk to and pay attention to how much you eat, exercise, stress and sleep and try with all your might to manage the beast. And new folks have come in, each in varying stages of knowledge and acceptance on their Fibro journey. People were nice so they stayed a little while, eventually set up camp and called it home. But I was not equipped to properly deal with the depth of guidance these new friends needed. I was trying to spread awareness with a message of hope and sunshine. Some were so far removed from that place that a huge clash of purpose emerged.

So this is what The Fun House is: A positive support page with neutral religious and political views that consists of Fibromyalgia patients that like to read this blog, want to take charge of their health and try to heal just a little bit. People that are free to vent and cry and lighten their load with a little laughter from their friends. If this is not what you are looking for, kindly move on. Please do not insult the page or people on it because you don't get the point. It is named The Fibromyalgia Fun House for a reason. I have ripped open my entire life for all to see on the pages of this blog. Those that know me through reading my blogs have no problem with my requests, for they are just the unstated obvious. Those that don't are the ones that just don't understand. So I am not going away, and nether is The Fibromyalgia Fun House on Facebook. I am going to keep writing my blogs and promoting awareness of Fibromyalgia. I am going to keep on keepin' on. Because that is just what we do.

Thanks for joining,

Thursday, April 28, 2011

I Am Going To Practice What I Preach

I went to the doctor yesterday, first time since I have been off Prednisone, where the reality of the trauma my life has been since July of last year was stripped bare in front of my face. For I had to step on the scale. I wore my lightest clothing and refrained from over-indulging in water prior to the awful appointment time of 6:30 in the morning! It was a punch to the gut, a very big gut apparently. I weigh as much as I did at the height of the Lyrica explosion. Oh I was not happy, not happy at all. Thank God I have no new woes or ailments, at least until the blood test, the specimen reluctantly trickling from my veins (drink water!), comes back on Friday. So the weight was the big concern. "Are you exercising?", she asked. "No not regularly" I replied.. "Why?" she inquired, with a caring turn of her head. "I am hurting and tired and lethargic and disorganized and unmotivated and often times just plain lazy", I truthfully answered. I am not back to how I was before the strokes. I am darn near still recovering from the Prednisone that was like an illness in and of itself. But the point had been made, the cards had been shown. I have to get up off my hurting and tired and lethargic and disorganized and unmotivated and often times just plain lazy ass. And walk my dogs, stretch my muscles and put my life back together again.

You know, all that stuff I am always chirping away about, what everyone else should do to manage their Fibromyalgia? I used to do these things, but have neglected to reestablish the routine. I was in the washing machine on the spin cycle for a long time and then it suddenly stopped and I collapsed, and am slowly crawling my way out as I regain my strength and fortitude. And I have no excuses anymore. My treatment is done, the strokes are ancient history, last year's news. Only the bright and beautiful future ahead of me. A path unpaved but calling, beckoning me to define how I am going to execute this leg of the journey of my life. Am I going to be successful?  The question ever present around me. If I stick with the established pattern, no, I will not. My Fibromyalgia may not be as well managed as it was before the whole debacle happened, but I am certainly capable of a much more organized and less whim-filled existence than I am indulging in now. So I sat down last night and tried to rough draft a weekly "schedule". It immediately became apparent what my problem is...

I am expecting way more from myself than I could ever possibly have time for! Exact same behavior pattern that I have exhibited my entire life. Except I am a procrastinator that works for myself now and sleeping 10 hours a night takes up a lot of time and I am so much more efficient when I am punching someone elses time card... So I am going to keep working on this one. Seeing my doctor always snaps me back into shape, makes me pick up the dropped ball of self-care. I choose her for that reason. But if I cannot make the sum of my expectations fit together on a piece of paper there is no way I am going to accomplish it in life. That, my dear friends, is chaos. Doing the same thing and expecting a different result. So for the first time in my life I am going to continue on with the puzzle, not throw my hands up in exasperation and distract myself with something else. But until I figure it out, every morning you will find Yorkie and Porkie and I walking around the neighborhood. And I will come home and stretch. For that is the mandatory requirement to accomplish my #1 goal.

Thanks for joining,

Tuesday, April 26, 2011

Be Careful Who You Yell At

Shortly after graduating from college I got a job. It was a small outfit; just the boss, me and an office manager. I was thrilled it was in my field of study and thought I was so awesome. Big kid out in the big world doing big things. But after a short while it all started changing. I started screwing up and forgetting things, characteristics totally opposite of my nature. And the more I screwed up the harder my boss came down on me, yelling and huffing and puffing the day away. It got to the point that I was developing a very thick and tight knot in the pit of my stomach every morning when I opened my eyes and thought about going to work. I hated going but had signed on for a year. I had to at least give it that year! But the more I screwed up, the more she yelled and put me down. Seriously it was out of control, I was never one to make mistakes, and certainly not frequently and regularly! The more pissed off my boss became the meaner she got, then the more I screwed up. This horrible cycle continued until I could not take it anymore and it was not long before I began looking for new employment. Literally the second I put in my two week notice the bitch went away and I worked out the rest of my time in a very pleasant environment. Whatever. But I vowed to myself I would never be allowed to be treated like that again. I would stand up from the second it started and channel it back into a professional dialogue, not a parent screaming at a kid.

It was quite a few years before I had to put this silent vow to use. I learned my lesson and was on the ball! Even creating full-proof record keeping systems at my new job and D-O-C-U-M-E-N-T-I-N-G everything! I covered my butt as best I could into a new career and 4 promotions up without ever needing to pull out that unspoken promise to myself. And then one day, out of the blue, I needed it. I was a very stressed out cosmetics executive and was launching a new makeup counter in a very high-profile store in downtown San Francisco. I was still recovering from the Pancreatitis of a lifetime in 2004, when my triglycerides were 7,000 and my lungs nearly failed. In my true nature I returned to work the second I was allowed. I had been hospitalized over Thanksgiving and who in retail can miss the day after Thanksgiving?? I had a lot to make-up for. My stomach still hurt and I was popping Vicodin to get through my 12 hour work days. But this is just what you did, the way the business was, the way my life was built. And then low-and-behold everyone converges upon me for this grand opening launch. Company people from out of town, executives, regional managers, vice-presidents, 15 makeup artists, DJ's and furniture, an extra cash register or two. It is my job to organize all if it, with my head twisting in a perpetual Linda Blair there was so much to do! My boss flounces in a good 3 hours after the event starts and pulls me aside, proceeding to scream at me because we are out of mascara! Never mind the company had discontinued their current one and had yet to ship the new one. He got reamed for this and was just passing it on down the line. I held my head high, did not cry, put on my "professional" face and went back to work, all the while seething and stewing inside.

After a few hours of completely ignoring my ass of a boss he says quietly amid the thick of the chaos "You must be mad at me. Sorry.". I turned, looked him dead in the eye and told him we needed to have a meeting at a more convenient time. We eventually found time to step away and I laid it out, "The company discontinued the flippin' mascara and DON'T YOU EVER TALK THAT WAY TO ME AGAIN!" His startled and nervous chuckle told me he heard me loud and clear. We went on to have a yell-free few months before he moved on because of health problems. The lady that had his job before he did left because of health problems. The person that held my position with a different retailer quit for health problems and 8 or so months later yours truly was down for the count problems! I can pinpoint this grand opening event as a pivitol point in the decline of my core health. It went straight down hill and by June of 2005 I was leaving my job and back to counter management. I know there is a genetic component to this neurological misfire, but a large part of me wonders if I had not lived that hectic and stressful lifestyle would I have still gotten sick, or was that just inevitable, the way I would live my life?

Thanks for joining,

Monday, April 25, 2011

The Cure For Fibromyalgia

At a social engagement not too long ago I met a friend of a friend that has Fibromyalgia. I was very excited when I was introduced to her to talk about it, The Fibromyalgia Crusade and all those other goodies that go along with someone you assume is of like circumstance. Well the excitement was completely one sided. She did admit to having Fibromyalgia but looked me dead in the eye and said she took some vitamin supplement or another and did not have any more symptoms. And that was all she would say. I went to my purse to show her one of our postcards and she stopped me before I even opened my bag, saying "Don't give me anything about it, I already know what I need to know". OKAY, I thought. I continued to try and engage her and she just looked at me like I was a complete idiot. She explained she had it for 30 years and had not suffered from symptoms since she started this supplement. I tried to ask her about how it started, what she felt the cause or "trigger" was. I was given a blank stare and she repeated once again that this supplement has taken all her symptoms away. She was looking at me like someone with strep-throat that was refusing to take antibiotics! Like the cure to this ailment was so obvious, easily obtainable and proven, I was just the moron that had missed the memo. It was an annoying and strange exchange and I wanted to shout at her, "You did not have Fibromyalgia, you had a vitamin deficiency!". But of course I could not do that so moved on to chat with other folks at the party.

I came home and researched this miracle cure for Fibromyalgia that you, I and the other 6 million people with Fibro in the USA have been missing out on. It was pure testosterone and illegal in this country! I have no idea how she gets her hands on it but as many of you know I spent months on high-dose steroids to treat the strokes I had last summer and am NOT A FAN of the side-effects. When I told my husband what it was he laughed and said, "Yeah, she kinda did look like a dude!". So sorry folks, no miracle vitamin for Fibro that I can recommend. But it was an interesting experience and really got me thinking. One of the most important components of true support is not forcing your ideas on others, not using your individual experiences as the rule and certainly not assuming everyone is like you. I have been approached by MANY claiming one vitamin potion or another has cured their Fibro and given them their life back. See they want my readers, they want YOU! They want my voice to shout out the validity of their multi-level marketing product, and when I refuse to agree that Joe Schmoe sitting in Texas has the cure for Fibro, but none of the doctors, researchers or scientists can even find the cause, I am told I don't want to get better.

It is the anger, hate and animosity coming from the Fibro community to the Fibro community that got me all hot and bothered once I published my blog and started to meet other patients. I saw so many tearing their fellow-suffers down because they could not agree on cause, treatment or cure. I personally have received far more hate and criticism from Fibromyalgia patients than anyone else in my efforts to spread awareness. And I believe this is a truly disabling component to the acceptance of Fibromyalgia as a real and viable ailment by both medicine and society at large. If the patients cannot agree, band together and form a united front, accepting the differences inherent in all of us, we have nothing to fight for our right to be heard with. It is such a shame folks like to spend more of their precious energy fighting with, bad-mouthing or criticizing other patients because of their chosen method of dealing with their Fibro. Many have found ways to manage it, live with it, even contain it so they can live the rest of their lives in a relatively normal way. But just because one person has found their magic potion does not guarantee others will obtain the same relief. It is with an open mind, giving heart and commitment to honesty we can all better serve our fellow Fibrates, and ultimately ourselves.

Thanks for joining,

Saturday, April 23, 2011

How Can I Minimize Stress When...

...I don't have a job I can do. I may have a job I am quickly becoming unable to do, a job on the verge of extinction or a job that I have already lost. But I do not have a viable way to support myself and my dependents, so how do I minimize stress with no income?

...I don't have access to the type of health care that understands Fibromyalgia and how to manage it. I am locked in a HMO, Medicare or Medicade, or simply have no or very restricted insurance since I lost my job. I don't have the luxury of shopping around and looking for doctors I can get to believe me. I am treated like a psychologically imbalanced nut job when the reality is it's a neurologically imbalanced illness but no one is paying attention, so how am I supposed  minimize stress without access to adequate health care to manage my symptoms?

...My relationships in life are falling apart. I am hardly intimate with my spouse or partner anymore because I hurt all the time. My children resent not having a healthy mom or dad to do all the things their friends parents do for them. My friends and family put pressure on me to get over this so we can get back to living our life as normal again. So how am I supposed to minimize stress when family and friends won't accept my limitations?

...Guilt is radiating from my body. I am so pitifully sad and angry because I am so dependent on others for basic things in life. And I can't return the favor because I am an empty bottomless well of need with nothing to give. I project these feelings into anger at many of those around me, and depression towards myself. I am so hopeless and confused and lashing out. So how am I supposed to minimize stress when I have the most relentless cord of anger whipping out at all around me?

...I am skipping along the yellow brick road one day and out of nowhere a debilitating chronic pain condition knocks me down, throws me around a little and spits me out a bruised, battered and beaten shadow of my former self. So how am I supposed to minimize stress when the rug of my life has been yanked out from underneath me?

...The frustration of Social Security is astounding. They refuse to believe that I cannot work. Appeal after appeal, month after month with no cash coming in. So how how am I supposed to minimize stress with no guarantee of shelter or food for the future?

...It has been so long since I earned a decent wage that I now have nowhere to live. My credit is shot, I can barely function and friends and family have fallen away like petals on a dying daisy. So how am I supposed to minimize stress when I have nowhere left to go?

Sadly my friends Fibromyalgia can strike hard and brutal, completely destroying some people's lives. The illness itself is awful, an unexplained pain syndrome with no modern medicinal cure and limited treatment options. But the stigma of Fibromyalgia not being a "real" illness has to be over. If someone does not believe in the validity of Fibromyalgia send them to look at the links on The Fibromyalgia Crusade website. If they know more about Fibro's validity than the CDC, WHO, FDA, NIH and Mayo Clinic, I welcome a personal introduction. At this point that is just ignorance. 

All of this awareness is about each person setting down the bag of bricks of the skepticism and doubt they have been tied too. And throwing the name Fibromyalgia back in the faces of the members of the medical community that were the ones that named it that in the first place! This illness hits some hard and knocks others off their feet. We have a responsibility to our fellow Fibrates to push awareness forward in any way we can. The above statements ring oh-so-true for entirely too many of our friends who face the hopeless and tragic situation Fibromyalgia can strip you bare and abandon you in. By looking out for each other and spreading awareness wherever possible, we are doing what it takes to push knowledge of this illness to the next level. And hopefully soon patients will be treated far better than we ever were.

Thanks for joining,

Friday, April 22, 2011

Is This Acceptance Or Acquiescence?

This morning we took our very pampered pooches on a 15 minuet walk to the coffee shop. Then we took them on an 82 degree walk back home. Yorkie was taking extended pee brakes in the shade, keeping his leg up long after he had finished so he could prolong feeling the cool grass out of the sun.  He is such a Northern California dog. Porkie is still a bucking-bronco-gazelle. Luckily my husband was walking her and spent the duration of both legs of our journey trying to tame our wild little monkey from bi-pedding it on her back paws. I also had little girl Yorkie #2 we are babysitting for a week. We will call her Yorkette. She is so cute. The doe-iest personality walking around in a chubby little body. So friendly and sweet. Truckin' beside us and trying to fit into our pack as best she can. She did not know quite what to do with all the new sights and sounds and smells but is a very good girl and pretty much just followed Yorkie's lead. We walk in the front door and the house goes off like a siren in front of me. It looks like a bomb went off! Stuff everywhere, days of dishes stacked up. Piles of clean laundry and dirty laundry dotting the landscape of my living room. Bags of dog grooming supplies here. Tools to file your nails there. Dog toys everywhere! Shoes and gym bags and...well you get the point. And as I walked through my apartment I had a moment of clarity. How do I let my house, my life, get like this?

For no matter how I try to coax perfection out of myself I just spent the last 2 days in my pajamas watching TV and being g-r-o-u-c-h-y! Allowing all of this to pile up around me. This is the result. This is what "out of the flare" me looks around and sees. And it takes darn near all my energy to get it cleaned-up and looking decent again. It is a very frustrating cycle. I have learned, in the 6 years I have had Fibromyalgia, not to force myself through a flare. It is a very delicate balance. There is so much negativity flying up at me. Guilt, confusion, despair, anger, frustration. They all come roaring up from deep inside. Why do I have this illness? Why can't it just go away?  I want my life back! I want to be able to clean my house and have friends and a career and fun! I have learned to control these voices, emotions, and distract my mind while resting my body. It is still hard to override years of self-criticism but I have to say each one I go through I get better and better at dealing. But the consequence is still that nothing gets done and it simply sucks and that is just the way it is.

Or is it? Is this acceptance or acquiescence? Surrender or settling? I believe with all my heart we are given challenges in life. Some grow us, some brake us. Others stretch us and often accompany the severest pain we have ever felt. We are the generation of patients that are going to push Fibromyalgia from a confusing rheumatological syndrome to a succinct neurological complexity. There are enough of us to make a fuss and get noticed, and our numbers are growing at alarming rates. But the diagnosis Fibromyalgia can be abused. It can become a "catch all" for lazy doctors that don't have an interest in someone as a patient. Don't believe their symptoms are as severe as indicated when looking at basic lab results that are as normal as sunshine on a sunny day. It is VITALLY important any and all illnesses that share similar characteristics as Fibromyalgia be ruled out first. That is complex and expensive. This is part of why it it a nightmare to get a confirmed diagnosis. But all of that aside I know my life is on the right course and I simply must have faith what I have gone through will serve a greater purpose. This is not the life I would have ever imagined for myself in a million years. But it is okay. I have been blessed with so much good too. Now I just have to go clean up my house.

Thanks for joining,

Thursday, April 21, 2011

Your Doctor Told You What?

I was talking to a close friend on the phone the other day and she causally mentioned she was seeing a new doctor that had abruptly taken her off ALL her hormones for a month so they could test her and see where her natural levels were. She is post-menopausal and has been off them about 2 weeks now and...BIG tired and lethargic, emotional, moody and crying her eyes out. Generally in a fog and really not able to function. Her job sends her all over the country in any given week and it is simply not safe for her to be walking around like this so I naturally HIT THE CEILING! "Are you kidding me?" I shouted. I was so pissed off that I was just hearing about it now. Seeing as I am a bona fide professional patient I was outraged. That is just a plain arrogant and egotistical way to practice medicine. Where did "do no harm" go? So I lectured her about how irresponsible that doctor was in doing this and proceeded to stew about it all day. Then as I was doing the dishes that night I got REALLY mad. How dare this lady do this to her, and a countless number of other patients I am sure? Whatever happened to checking her levels as they are and assessing if they were in the right range with the hormones? How about reviewing her previous medical records that indicated she needed these hormones in the first place to verify her base levels? Oh I am so fired up I am about to write the doctor a letter myself!

Sadly enough Fibromyalgia patients are not the only ones that deal with idiot doctors. As my husband reminded me at some point in this mindless journey of one health whoa after another, You can get all "C"'s and still be a doctor. I had never thought about it quite that way and recognized this as sad but true. It is imperative each person facing any medical situation be as knowledgeable about the symptoms or conditions or treatment as possible. Clearly identify the needs, abilities and necessities involved. Research and educate what options are available. If given a new prescription check the warnings and side-effects. Know what you are getting yourself into. Be prepared. And most certainly if a treatment seems extreme or risky or unsatisfactory remember your right to a second opinion. I remember when I was so sick and undiagnosed. My life was quickly flushing town the tubes. I just wanted a doctor to believe me and help me! I could not work and was not getting better. I was desperate, and my hopes were trampled on so many times I cannot even count. It took me sitting in my doctors office, crying that Percocet was not controlling the pain, was making me nauseous and constipated and inducing terrible mood swings, for me to get it. See she looked at me and said "There is nothing else I can do for you. You need to figure out how to get yourself better". That was my breaking point, where the anger rose up above the pain and anguish and my pride and self worth said Screw you. And that is exactly what I did. Set out to get myself better.

It is such a shame I never found a doctor that could oversee the entire treatment that got me off my sofa and back to living life. It was more of a "take what you can get wherever you can get it" type of protocol. I had a resident in clinic at UCSF that was the first to believe me, not dismiss me as a head case. He oversaw the multitude of tests required to rule out anything else that shared the symptoms of CFS and Fibro. I would do internet research and take lists of medical conditions in that shared some of my symptoms and we would go through them line by line as he ruled out why they could not be the source of my problems. He oversaw my state disability and FMLA. I had an endocrinologist that helped me with medications to manage my pain and sleep and prescribed physical therapy. She is also the one that told me to get myself better. I saw a MD at The Fibro & Fatigue Centers that identified my CFS was caused by a virus. I saw a research doctor at Stanford who was running a clinical drug trial on CFS patients with my sub-set, VICD (scroll down to Resource Links for more info). I saw a sleep specialist. I saw a psychiatrist. I saw a therapist. I saw an acupuncturist. I saw a chiropractor. And at the end of all this medical care I regained enough health that I could resume life. It took years, money, patience, perseverance and a belief that it could happen. For if we do not advocate for ourselves, it never will.

Thanks for joining,

Tuesday, April 19, 2011

Support Can Come From The Least Expected Places

As a person with Fibromyalgia, fitting into the world at large can be a bit difficult. Not enough energy, too much pain. Fatigue and exhaustion interrupting each attempt at lighthearted conversation. It is no wonder we are all so happy to have found each other! Finally, typeo's and misspellings are not judged, if it takes someone a day or two to get back to us, we understand. When we say LMA, a whole buncha folks intrinsically know what you mean. But sometimes a simple gesture of support from the least expected place can have a huge impact. I had that exact experience last night. See when you go on here or the website and purchase something I am sent an email. It is then up to me to respond and package and ship the item. So last night as I settled down into bed I saw I had a new email. It was for a purchase. Awareness bands from my cousin. Now my cousin, we will call her Jessica, and I did not grow up together. We have met more than a few dozen times and hung out plenty over the years, but came of age in different states, with divorced parents all around...let's just say life gets hectic. Funny that we both grew up to LOVE to write and found each other on Facebook.

She would pop up on the Fun House every now and then and I found out a few weeks back that Jessica has been reading this blog. I was quite surprised to learn this. See she does not have Fibro and I didn't think the blogs would be all that interesting if one did not have or was not touched by Fibromyalgia in some sort of intimate way. But as a true lover of the craft she thinks I am descriptive. And sadly enough chronic pain, among a myriad of other sicknesses, is something she has experienced first hand in a very close loved one. I was most certainly touched by her support. Unspoken, not bragged about, but nevertheless still very much there. Then last night she goes and orders awareness bands and darn near makes me cry a river I am so overwhelmed with her pure outreach, genuine interest in supporting what we have going on here! See I lovingly cart these bands around with me as a fixture in my purse. I hand out a lot of information cards but don't sell too many awareness bands that way, but that is not my purpose. I put one on the first day I ripped open that first order and have literally not taken it off since (tan lines beware). So needless to say people ask a lot of questions which means it is doing its job, serving its purpose.

But plenty of people don't ask, too. Strangely enough it is usually extended family members or acquaintance-ie friends. Certainly not all of them, for I have a generous form of support with those closest in my life, but more the peripheral ones. Probably the same ones that would not ask their mother if she was wearing a support band of any color. Or a tee shirt with a big flippin' purple ribbon emblazoned in the center. Kinda hard to ignore, but plenty will avoid direct eye contact, skirt the issue, not mention it so therefore it does not exist. See sick people, death, all those things are messy. And folks that have not dealt with them much in life tend to avoid them. Or say something stupid. Or offer abrasive words of condolence meant to comfort but really only serve to squash a person's necessary time to mourn. But not Jessica. She went far out of her way to lend me, her cousin, some support with a messy illness I have spilled intimate details about all over the internet. And in doing so she touched me deeply and reminded me that not everyone is against us. We may often feel like it, but keep your mind, heart and eyes open, for true love and support can sometimes come from the place you least expect it.

Thanks for joining,

Monday, April 18, 2011

Educate, Relate & Commiserate

After much soul searching and a heavy dose of acceptance, I am doing the equivalent of a corporate re-structure on my life. So angry and disappointed about the things I cannot do, things I fought so hard to get back after I got Fibromyalgia and CFS, that are now gone again after the strokes. I must face them head-on, at my own pace, to get them back. And then there is a whole new world of responsibility and obligation I have added to my life. Sure I "retired" from my 10-year career as a makeup artist and stopped having to go outside my home to work, but I have whipped up a whole storm in the world of Fibromyalgia advocacy and awareness and that has come with a greater responsibility than I could have ever imagined. The Fibromyalgia Crusade, this blog, The Fibromyalgia Fun House, they all started when Prednisone was surging super-woman through my body. Super-woman is gone, but my house of cards still remains, and I have been at such a loss as to how to balance my personal life and professional persona so my cards don't go flying out the door with the slightest gust of wind. I finally think I have figured it out. 

I had to go back to my roots, the entire intention behind all of this. I have found heaps of excessive expectation and misguided direction and just plain judgment piled up on top, hiding and confusing my true purpose. I have allowed this to happen, permitted myself to be swept up in the storm of frenzy and excitement. But storms end, and the sun eventually comes out again. See I promoted my blog publicly yet in my heart and soul remain a private and sensitive person. And each time criticism or anger or negativity have come at me (which it inevitably will if we choose to be viewed through the eyes of those we don't know) the most effective way to jolt me was to attack my efforts.  How did they know this? I knew I was doing so much to help heal the emotional hurt and promote awareness of what Fibromyalgia really is, but to my adversaries I was not doing enough, and certainly not where it mattered! I jumped right on the bandwagon with them, darn near leading the brigade. Oh did I take that criticism to heart!  According to those that have publicly maligned me, they expected heavy-duty government advocacy and lobbying to come from a girl recovering from 2 strokes at age 33, my little blog, Facebook page and brand-new awareness campaign. And hit after hit I was challenged on what I was doing to "lobby" for Fibromyalgia. Apparently to them that is the only way to make a difference, and they are amazingly ignorant as to what "lobbying" the government really takes. But I did back flips to try and meet these expectations. Sadly all I have done is halt any real progress and indulge in chaos. Just looking at it now makes me laugh and wonder where the hell my cojones were! Why didn't I tell these people to go sit on a tack and leave me alone? Go play in traffic, start your own lobbyist group to sit on Capitol Hill? Why did I allow the opinions of a handful of mean strangers darn near cancel out the thousands of friends that had found a group to accept, encourage and believe in them?

I am happy to report I have shed that snakeskin, shucked that corn cob. I am a writer who started a blog about Fibromyalgia. A Facebook page grew around that and out of the just plain ignorance so many were faced with The Fibromyalgia Crusade was born. Our mission statement reads loud and clear: "A patient-united awareness campaign..." That is what we are. Patients coming together to improve the quality of our own lives. Forming friendships with many that understand first hand how awful Fibromyalgia is. Gaining strength from knowing we are not alone in this journey from hell. Coining silly attachments to varying shades of purple that equate to our symptoms but help us feel understood. We have philosophies we subscribe to, such as refusing treatment from doctors that don't "believe" in Fibromyalgia. Taking responsibility for our own health and quality of life, to the best of our abilities. There are awareness items The Fibromyalgia Crusade sells, one of the most important being the Doctor Appointment Pack if one is still struggling to find a doctor to treat them, and how to conduct the appointment to get the most out of it. We have awareness wristbands, key chains and tee-shirts. They all serve to spread awareness and get folks asking questions. There is a postcard to print out to hand out to those that refuse to believe or just don't know what Fibromyalgia is. I hand those out abundantly every time I leave my house it seems. And the website is now a fabulous place for both patients and their "normals" to understand the complex world of Fibromyalgia. This is where we will rest, right now. We are still growing in leaps and bounds and have not even been around a whole year! We will eventually work towards a non-profit arm, plenty of lobbying and advocacy, lots of ways to expand our reach in the future. But for now I believe we are off to a brilliant start. What we are here to do is educate (website), relate (blog) and commiserate (Facebook). That is what we will focus on while our quick growth catches up with us. And if you are still looking for me to high-tail it to Washington and lobby Congress tomorrow to prove the authenticity of my commitment to spread Fibromyalgia awareness I sure hope you are holding your breath. Seeing you blue will be very funny.

Thanks for joining,

Saturday, April 16, 2011

Loss And Regret

My dear readers and friends, I write to you today with tears streaming down my face. The day started out with an "I hate Fibro" tune to it and it just pushed me into the worst LMA of my life! See I am really mad today. I am so sick of being sick. Of making concessions for this stupid illness and what it has done to my life. Of the excuses and allowances that have to be made. Of the sheer loss of opportunity in life. Shifting from a life of purpose to a life of necessity. This really sucks and I don't want it anymore! I want to give it away, take it to a place where it can be buried in the landfill that has consumed my life. I just fell majorly prey to a stupid accident involving the broken bar on the inside door of the refrigerator and a spilled carton of yogurt. And it pushed me to the edge. An edge I had been teetering on for the last 2 flare days but had managed to avoid. But having my husband home on the weekend and watching, with no filter, how much life really sucks for both of us because of this illness fills me with rage. I DON'T WANT TO DO THIS ANYMORE! 

I want my life back! I want choices. I want to feel pretty again. I don't want to take 15 pills a day just to be able to get out of bed. I want friends. People used to be in such abundance, it was never a question of if we were going out on Friday and Saturday night, just a matter of where and with whom. I want to walk my dogs and do yoga without winding up in a total flare, barely able to function after only 3 days of activity. See I am still off my axis. Bumping into every little thing. Spilling it or dropping it if it can be spilled or dropped. Getting my ankle twisted up in the sheets and wrenching it, for goodness sakes! Sometimes the true impact of all that I have really lost smacks me upside the head. Right now is sometimes. And it hurts, is ugly, so unfair and makes me cry and wallow and feel sorry for myself. But that can only last for so long...

Eventually I will calm down and focus. Relax my insistence to control my life. It is the hardest impulse to ignore, I was such a control freak my entire life. Everything was as close to the way I wanted it and could still get away with. But then I catch a glance of that tattoo on my arm, the prayers I chanted night and day when the fear of death was sitting on my chest in that hospital bed, laughing with its Hinayana head and Gargoyle body. Drooling and dreaming of snatching me up. I prayed to God that I would be comforted from the sheer terror. And I was. I continued to pray, and I was always comforted. Somehow I made it through the treatment and am still having to run back to that comfort. Life is much harder with Fibromyalgia after the strokes. I took significant loss in the "managed" department. Its like I am starting at baseline again. So today I am angry and bitter. Well actually just this morning. After getting all this off my chest I feel better. I still feel loss and regret, but just may feel up to looking for  my friend positivity soon. She is much easier to find when I am not standing in the middle of the kitchen, crying, my feet and half the floor covered in yogurt with condiment bottles rolling in and out of it all around me.

Thanks for joining,

Friday, April 15, 2011

Today Is An Off Day

And I don't mean a day off!  I am having a rough start today and ponder this, because some days life just clicks and some days its like my base energy is off and my mood is off right with it. An axis a little more tilted than that of our planet earth. Of course this only compounds my problems and aggravates me further. I hurt a little bit more today, not sure if I overdid the exercise in the beginning of the week. I have all sorts of computer-downloading-updates problems that darn near crash my hard-drive and then log on to The Fibromyalgia Crusade and find I have 2 "about" pages showing up, one current and one old. So I tinker around with that for a while, burn my toast, over-salt my eggs and leave a direct trail of coffee from the kitchen into my office sloshed onto the carpet. Oh yeah, and Porkie peed in the house this morning and right now I have a gnat swarming around my head that will not get lost! Phew. What a bunch of petty problems! But it is frustrating when the whole day seems to present itself this way and an overwhelming feeling of impending doom black-clouds it over my head with every future action I perform.

Fibromyalgia is not a special illness. It is just an illness modern medicine does not understand a cause or cure for. Yet. What they can do is help "manage" it, though. Through lifestyle and medication and lots and lots of sleep, we the patients can manage it the best way possible. But a very necessary and important first step must happen. That is called a good doctor that is going to work with us to find a successful treatment. We can mostly help that along, doing research and sourcing medications and questioning symptoms to diagnosis. But the absolutely most essential thing is a doctor that believes us. I believe every Fibromyalgia patient has a responsibility, to the best of our ability, to only solicit doctors that believe in Fibromyalgia and take us seriously. It is here we can affect the most change. Continuing to be seen by doctors that degrade and dismiss Fibromyalgia only reinforces that behavior and keeps them rich and us untreated. But the reality is that doctor may just not care because he does not know how to treat Fibromyalgia.

For it is in total body wellness the minimum impact of illness is felt. That begins with what I like to call the 5 pointed star of health: sleep, diet, exercise, stress management and balanced hormones and brain chemicals. Our doctors have a responsibility to aid us in managing our sleep, hormones, brain chemicals and pain. If the doctor is not willing to do this they are not doing their job and we need to look for a new one that will help us discover a solution to these problems. This pain and fog that is not going away is capable of destroying our quality of life. It is a hard calling, my friends. To be trapped in the body of a Fibro patient. I did not believe the pain could be so bad for no apparent reason before I got it. No one can comprehend it until it happens to them. So please join The Fibromyalgia Crusade in affecting change at the bottom line. Please don't continue to see doctors that shrug you off like an annoying nuisance. Let them experience life minus Fibromyalgia patients, for sadly, folks, our numbers are on the rise.

Thanks for joining,

Thursday, April 14, 2011

What Do You Mean Fibromyalgia Is Just A Syndrome?

When I first got Fibromyalgia, the diagnosis that is, I paid little attention to that strange word Syndrome that comes after it, and all my attention on the pain shock-waving through my body. All I cared about was a job I couldn't do but could not afford to lose. My reality was that I was sick as hell but had to keep working, just making myself sicker. It was a no win roller-coaster ride with a crash into a brick wall at the end of it. With no brakes. I never really paid attention to it when I was actively battling another syndrome, the war between terrible viruses and a cancer-causing carcinogenic medication being waged painfully inside my body. No it did not cross my mind as the Chronic Fatigue Syndrome receded into the background of my life as a managed condition, or even possibly considered in remission.  It certainly never occurred to me as I "downgraded" my career from a junior executive position to a 15 hour-a-week part-time night job and it was never even considered when we finally bit the bullet and moved to Arizona. Hot weather and a lower cost of living pulling us out of the cold and expense of big city living. It was here that my Fibro ceased to define me, entirely. The dry heat was of immense relief to the bone chilling foggy year-round wet cold of San Francisco.

Still it did not make one who-ha of a difference to me when I was forced off pain meds by my doctor and put on a stronger dose of Lyrica that caused me to balloon up to epic proportions and completely zone out of my life. And still through all this I did not have any concern over that small little word at the back of this big beast called FIBROMYALGIA that had become the fight of my life. It happened only when I had two strokes, published a very deep and intimate blog about my journey and promoted it for all to read. I did this as a way to give better insight and understanding about what it is like to live with this illness and share with other patients there is a way to manage the symptoms so life was not so unbearable. I was reading Fibromyalgia sites on Facebook left and right. I discovered the state of affairs in the world of Fibromyalgia across the country and was appalled. No one should be blamed for having this illness simply because modern medicine is not advanced enough to know how to study or treat it. Yet I was meeting folks left and right that experienced just that. Bad doctors blatantly stating they do not "believe" in Fibromyalgia. Spouses and partners still insisting that if you would just get up and ________ (fill in the blank) take a walk, exercise more, lose weight, eat better, sleep better or just plain decide to get over whatever is wrong with you, you would feel better! And I saw how badly the battered and bruised patients became, with doctors giving the families and friends all the ammunition they needed to ignore that they are really sick!

And then one day it jumped off the screen at me. For I had been ranting and raving about Fibromyalgia the disease. Yet all my research kept referring to it as a syndrome. Syndrome seemed so degrading to me, like it downplayed the validity, kind of what "Chronic Fatigue Syndrome" does to that syndrome. And then one day it was explained to me. Syndrome simply means "no known origin". They cannot figure out the decisive medical cause. That still did little to comfort me. But then I got to thinking. The condition that caused my strokes is called RCVS, Reversible Cerebral Vasoconstriction Syndrome, that S word again. And I most definitely had 2 strokes, verified by multiple methods of scanning slices of my brain and threading cameras through my body to observe my cranial environment. And sadly I thought of SIDS, Sudden Infant Death Syndrome. There it was again, that S word slapped on a very tragic and very real medical crisis. So I guess I have accepted syndrome as the end word of the illness that is Fibromyalgia. Without offense. But only until a cause for this monster is discovered and I can go back to calling it what it really is, a terrible terrible disease. Now we just have to get the rest of the world to understand.

Thanks for joining,

Wednesday, April 13, 2011

When I Was Getting Married

As I was unloading the dishwasher yesterday I took pause and actually looked at my silverware, didn't just throw it in the drawer and hope it stayed a wee bit organized like I usually do. It is a strange design where the knife balances blade up and down, not side to side and the handles are very "rollie". Half of the pieces have substantially less shine than the other half. I recalled why and the irony made me pause for a second, really ponder how life has turned out SO DIFFERENT than anything I had ever imagined. For this is the silverware we registered for on our bridal registry. My husband picked it out and although the rolliness of it was strange it was one small but necessary win for him as we traipsed through Macy's, my dear honey forced to negotiate with a stressed-out perfectionistic 24 year-old bridezilla. One who was dictating every button, bow and bamboo placemat, and really resented having hooked-up with a guy that cared about all this stuff. I mean I was the interior designer, I was the woman! Never one to just accept my bossiness he butted in on every beep on that scanner gun and made me negotiate and (shock hand over mouth) compromise!  I could not just do what I want, I had to consider his tastes and needs and repulsions. So 10 years later we have rollie silverware, however many odd pieces left, half dull and the other half shiny.

We had registered for  something like 12 or 14 place settings and had wrapped half of it up and packed it away, saving it for the day we bought a nice home and big dining room table that cost more than a place setting of china. We would want shiny new silverware to entertain with, to match the rest of our shiny new lives. But that day has never come. As we have moved from city to city, apartment to apartment, somewhere along the line the worn-in daily use pieces and pristine bubble wrapped silverware were dumped together. I credit our 20's with the initial delay of this suburban vision of my future life. At first it was our nomadic tendencies that squashed the salmon-like instinct to return to where I came from. We spent the whole of our 20's traipsing up and down the state of California. Our college town, L.A., San Francisco, we were always searching for the next best opportunity and were hardly concerned with planting any roots. That was for later, after we were out of our 20's and had kids and dogs and maybe a parent or 2 living with us. You know, that far away future to a 24 year-old kid kind of thing. 

As the story goes I got sick 2 weeks after my husband graduated from college, we moved 20 minutes out of San Francisco proper and he started his new job. We never got a chance to pool our resources and  prepare financial security. Buy that shiny new home or have those kids. We went right from my decent paycheck and his sporadic one (commission) to his very decent check and my substantially-less sporadic one (FMLA). So as I finished putting my dishes away I pondered over the choices we have made. How much we have grown and changed as people. How spending 6 years in the big city replaced the suburban suck I envisioned spending my future in. Our nomadic nature, harmoniously compatible, is never quite settled. We are always keeping an eye on the future and next great opportunity, driving through a life that is substantially far crazier than I ever could have ever imagined. And as I reflected on this journey a deep satisfaction came over me, that I am okay with this life. I am a very happy renter with a handyman and pool and hot tub at my disposal. My dogs are my kids and we are not tied to a property or as current circumstances dictate, holding a mortgage far greater than the value of the home. And I still have that dining room table that costs less than a place setting of china but you could never tell, it still looks really good!

Thanks for joining,

Monday, April 11, 2011

Prednisone Was God

I started this unpublished and completely private blog about my chronicles in surviving and living with Fibromyalgia last year. Then I had 2 strokes in July, 5 months later. The treatment was Prednisone, high dose, for about 6 months. Apparently during that time I went all kinds of crazy. I published and started promoting my blog on Facebook. People started reading the blog and felt understood and inspired. I formed a support page where folks could get to know others with Fibromyalgia and feel that understanding, not be so alone. See my page got too small to contain the chatter, the support, the friendships that were forming. That is how The Fibromyalgia Fun House support page on Facebook came to be. We shot off like a bang, already having a core group that built the page up with their fun and laughter. Hilarious points of view exercised in the absurd. Support and acceptance.  Assigning our pain to different shades of purple in an attempt to simplify the explanation process. Discovery of common ground many had never felt before. The numbers grew quickly. And as the numbers subtly adjust up and down they kept growing. The hits on this blog kept rolling. And this whole experience touches me so deeply that I decided we needed to form a patient united awareness campaign. And high on Prednisone that is exactly what I set out to do. 

I recall this last year with a haze of mania and frantic energy over the last half of it. See the prefatory of all this was the incredible gift I was given in the hospital. Truly my life, and ability to function in life was spared a possible multitude of complications. I was so overwhelmed, so thankful for my mere existence that I took that life and surrendered it completely to God. I stopped putting plans or limits or restrictions on the direction it was going. I simply lived in faith and let goodness flow. I figured God had spared my life for a reason, left me intact and functioning, and I set out to accomplish that reason! Marching one step ahead from behind myself, racing through life I blogged and Facebooked and whipped up this awareness campaign where we, as a united patient body, with our dozens of differences among us, stood strong in our 1 uniting factor to push for awareness and a better quality of living for ourselves. That is The Fibromyalgia Crusade. I believed very deeply that what I was doing was so good, so necessary, so real that I threw everything I had into it and now 2 months off Prednisone I am flat and deflated. Confused and not really sure where to go next, because I think the whole intention of this mission is entirely off course. 

See its supposed to be about the blog. And from the blog comes the support page and Crusade. Both are equally necessary in this equation. But now I feel it is all about the Fun House, which is full of fun new friends that maybe don't know any of this, and the blogs are secondary and the Crusade is losing steam. And I need to turn this boat around, take us back to our original intention. Because I don't know to steer this one in the direction we are headed. And as I cried all of this out to my husband this afternoon I suddenly looked at him with a moment of clarity and said "What if this is not the plan for me? What if that was Prednisone fueled mania and what I took for signs and direction was random occurrence? What if it was not God, but it was Prednisone?" But as I am writing this out I am getting a small lift in my spirit. A little stirring. And I feel the stubborn me rise to the surface and quiet these chirping notes of self doubt. For in expelling the troubles deep in my soul I can deal with them, I can conquer them, I can overcome them. So I would have to say then no, I did not mistake Prednisone for God. I followed the path that sprung up in front of me and regardless of if I am on steroids or not, this is the one I will continue to walk. Now I just have to find the energy!

Thanks for joining,

Saturday, April 9, 2011

No Man's Land

I feel that I am existing between forces right now. I am in a huge vacancy, a big void. The frenzy of 6 months on high-dose steroids is behind me. In the wake of that wild ride I am left with a beautiful support page on Facebook for over 2,000 amazing people touched by Fibromyalgia. I have a large readership on an entirely unadvertised blog and the makings of an incredible patient-united awareness campaign sewn up. Yet I am extremely unmotivated about where to go next, and am very unhappy with the quality of life I have negotiated myself into. There is so much good that has come out of my strokes. But without the Prednisone, I don't have the energy to keep propelling it forward at the same pace. Hell, I am struggling just keeping myself together, and am doing a pretty shoddy job of keeping up appearances!

Somehow I have bargained myself into bed for 2 days. I get up only to eat or use the restroom. I am not cooking, cleaning, exercising, doing anything really to better myself. Yes there are 30 thousand excuses why, but only 1 reality that exists in what I have not done. And this is the curse of the type A getting Fibromyalgia. What is actually health management and what is just me being lazy?  What is the difference between pacing and simply I don't want to? I am not in writhing pain, am not overwhelmingly fatigued, not fogged to Cape Cod. I could look at this as a rest, a reprieve after a really big storm. Time needed to heal and re-group and regain some perspective. Or I can beat myself up for not meeting the standards I know I need to live happily in. Not committing to myself every day a hard-core faithful schedule, certain designated times for each activity religiously executed day after day.

With a me like me who needs enemies?  Sheesh, is it possible to be any harder on me? I am exhausted! I feel like 6 months on high-dose steroids was an illness in and of itself. I feel my brain and heart and soul are just settling down from the shock they went through. My marriage is just getting back on track. My husband is laughing again, planning hopes and dreams for the future. The Fibromyalgia Crusade and Fun House have grown so quickly! But then I get mad at myself for not advancing my health, my standards, my campaign with vigorous energy every day! For that is my future. Then I chastise me for being so hard on me!  And I can spend the rest of my life in this balance, beating myself up for every imperfection, then excusing my next obligation away with unmotivation.  But while part of me says Rest up, you have been through a lot and deserve it there is also a bluebird sitting on the other shoulder chirping quite loudly Get up off your ass and live your life. You have been through a lot and don't have a minuet to spare!  I suppose every yin needs its yang, hot needs its cold, spicy needs its sweet. I am leveling out from months on the balance, teter-tottering at every bump or bruise. But these oppositional forces inside of me are driving me crazy and I have to come to terms with them soon. I think I will go have some frozen yogurt and watch a little TV in the meantime. This day is almost over, why upset the balance now?

Thanks for joining,

Friday, April 8, 2011

I Seem To Always Get Caught

When I was 13 years old I got caught. I got in trouble. They found something in my locker at school that should not have been there and the result was abandoning my fathers suburban tract home to reside at my mother's country sprawl. I was just learning to separate myself from my family identity and one mixed-up little girl was emerging. A few years later I moved back to the suburbs and it was not long before I got in trouble again. Same friends & more = same stuff & more. But this was private, this was at home, and I was grounded. I spent my 16th birthday grounded. I was allowed to go to work and that was it for like the whole summer grounded. I was not allowed to get my drivers license on my 16th birthday. But my father was never one to deprive me for long and I recall getting it about a month or two after. Those were two jarring experiences for me and equally for my parents too. The necessary and painful experiences that get you back on track to a life of independent success, not absorbed down the drain of too much excess. So I learned how to carry the party girl deep and well hidden. I still caused little bits of trouble for myself here and there, but none I could not get myself out of, none my parents were ever aware of. Like I said, she was well hidden. 

Around age 22 my body got me in trouble. First pancreas attack. It took another bout with Pancreatitis 6 months later to diagnose a genetic triglyceride malfunction that was causing them and drinking and eating were heavily curbed. Then comes the 3rd one at age 28. See after a few years pass, we get married, move to San Francisco and discover what it is like to have a bar literally downstairs from your house (a lot of fun!). The drinking and greasy food were back up again. So back on the wagon I go. Six months later I got sick and have never gotten better. In fact my entire life has been absorbed by overcoming and managing chronic illness. So what I am trying to say is that every time I have grown wayward in my intentions, my actions, something has stopped it. Something big has gotten in my way and put me on track again. I wonder if it has harmed me or saved me. One will never know.

I can look at this as a curse or a blessing. Or maybe a little of both. This is tough stuff. The pain, fatigued, dazed existence of a Fibromyalgia patient. Very hard to embrace while life as planned necessarily goes away. Hides itself under a bucket of symptoms, waiting for you to get through them and to pick up that bucket and look under it. But they are impossible to get through. They are too strong, too many obstacles in your way, medicine does not understand, doctors do not understand, NOBODY UNDERSTANDS! I know that I have chosen in my life to seek out health and wellness. See I believe there are specific medical reasons why we experience CFS & Fibromyalgia. Science just does not know them yet. I believe they must find a cause before they can find a cure. I also believe the modern lifestyle is extremely unhealthy, entirely too convenient and not enough work where it counts. In making food, in exercising, in sleeping, oh you know me, the list goes on. So until they figure it out, advance enough to inform us what in our minds and bodies is causing these illnesses, I choose to be the healthiest me I can be. And that is striving for health, but more importantly forgiving myself for being human and nowhere near perfect.

Thanks for joining,

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Thursday, April 7, 2011

What Exactly Is This Fibromyalgia Crusade Anyway? (Repost)

I have updated and much improved The Fibromyalgia Crusade website! Check it out!

When I first opened up my blog and began to meet so many fellow Fibro patients I was amazed. And not in a good way. I discovered an emotionally abused, frequently abandoned group of people that were beaten down and barely hanging on. No, not everyone, but entirely too many none the less. So many had lost hope, lost their fight, and were just existing in a suffering and miserable condition. Life was NOT getting better for them. The sheer number of those that had lost their marriages, jobs, health insurance, homes. It was staggering. As was the complete lack of anyone doing something progressive and actionable about it. So I got all fired up and blogged on September 4th last year that I was starting The Fibromyalgia Crusade. I had no clue what that meant or what it was, but knew that would come; the knowledge, ideas, money. I  saw a patient group that was large yet lacking any sort of channel to improve their quality of living. I guess this is my solution for that channel...

Our Mission Statement:
The Fibromylagia Crusade is a patient empowered and united awareness campaign created to spread support, strength, knowledge, understanding, compassion, inspiration and laughter. Through our own efforts we raise Fibromyalgia awareness in order to instill a better quality of living for ourselves.

So what exactly does this mean? It means we the patients get together. And each person takes on a personal responsibility of how they are going to change and promote Fibromyalgia awareness, improving their lives in the process. There are MANY ways to do this:
  • Realize YOU are the only person that is going to get YOU better. 
  • Get a handle on your health. Only work with doctors that are working with you to find a successful treatment plan! Don't continue with dismissing or degrading medical professionals. The goal is two-fold: Get your pain, brain and sleep under control and DO NOT continue to expand the wealth of doctors that do not "believe" in Fibromyalgia. It is hard to find and start up with a new doctor. We have a Doctor Appointment Packet available to aid in this process if you need assistance. But if you can't get out of pain or sleep you can't fight a war, and that is where we are going.
  • Find a support network of fellow patients so you can vent and complain and laugh with people that truly understand. This takes a major burden off your relationships with the non-Fibros in your life.
  • Respect the 5 pointed star of health: Sleep, Diet, Exercise, Stress and hormonal balance. Make conscious decisions to live a healthy lifestyle, it will often minimize your symptoms. And don't expect to be perfect, just kind to yourself.
  • Educate and advocate with your words, Fibromyalgia Crusade postcards, tee shirts and awareness bands.
  • Thicken up that sensitive skin lots of us suffer from and change the mentality from victim to soldier.
  • Participate in the "Annoy Your Government" letter campaign that will commence soon!
  • Participate in good doctor thank you letters and bad doctor shame on you letters that will be coming soon. More to follow...
We are 7 months old. I think we have done a pretty darn good job so far, if I do say myself! We are growing and expanding and getting stronger every day. What we have IS real and WILL one day be figured out. But until that happens we are going to demand the best quality of life possible!

Thanks for joining,

Wednesday, April 6, 2011

Maybe Not Looking Sick... not the worst thing in the world. We get so frustrated and angry by that comment, interpreting it as an affront to the reality of our suffering, a question of the validity of our illness. But if 6 months on high-dose Prednisone has taught me anything, looking sick really sucks! I grew Gorilla hair all over my body, picked up a sweet little mustache, blended my liquid makeup into my sideburns and plucked wayward eyebrows daily. My face puffed up like a fleshy volleyball and my gut looked either pregnant or full of beer, I could not differentiate. I have been off it almost 2 months now and last week finally got up enough courage to take new pictures for my profile and the website for The Fibromyalgia Crusade. Of course my hair and makeup had to be done, and Yorkie & Porkie each got a trim and a bath. And I still weigh quite a bit more than I did before Lyrica-then-Prednisone, but at least feel somewhat human again. Like I mildly resemble my former self just a little bit and am putting forward the best face I can.

So how do we keep the integrity to not trash our appearance but still convey we are really ill to doctors, family, friends? I advocate in my Doctor Appointment Pack to pay attention to your appearance when you go see your doctor. Change out of those sweats and wear some street clothes, comb your hair, put on a little lip gloss or shave your whiskers, gender specific obviously (although I could have done both on Prednisone!). It is important to be viewed as an organized, normal, intelligent individual with something really wrong that is making you really sick. I believe this and have experienced first hand the difference between being dismissed as a depressed and disheveled mess of an individual and taken very seriously as a pro-active sick person that is a force to be reckoned with. I demand effective treatment and answers out of my doctors. Yes I know Fibromyalgia is grossly misunderstood by the medical community but there are still some theories, some research, some knowledge of this illness and I want it shared and my treatment to lessen my symptoms. So if a hairbrush, jeans and lip gloss do this for me it is well worth the effort.

Looking better also leads to feeling better, even if just a little. Ever had the flu? You spend 3 days in bed sweating and sleeping, vomiting and more. And then that fever breaks. And the need to expel everything including water goes away. So maybe, you think to yourself, I am not so dizzy that I can stand up in the shower. And the second that water hits you and starts to wash the sick off, you start to feel a bit better. Exhausted, but better. This is kind of how I am feeling everyday. I am going through a particularly resistant phase right now. I am sleeping 12 hours a night, don't leave the house much, and am having a very hard time getting my motivation and organization back on track post-strokes, post-Prednisone. Yet the days I do take the time to clean up, makeup, and go somewhere or do something, I am not as down as I am when I sit in my apartment, barely leaving it to take the dogs to do their business, not really exercising or doing much to feel I look good. So I guess I am saying it is worth it to spend  some of our limited energy on ourselves. No, 5 shades of eyeshadow and 3 coats of mascara are not what I am talking about. But taking a little time each day to do clean up and fix up. And having one hell of a response in your back pocket to all those annoying know-it-all's that think if you care about the way you look, you must not be sick.

Thanks for joining,

Tuesday, April 5, 2011

You Might As Well Paint The Ceiling

When my husband and I moved into our current apartment we decided to paint. Or rather he decided to paint. We have been renters for years and always wanted to paint the walls but never made the commitment of having to paint them back to white when we move out. Sick of waiting to live life, of really enjoying the decor of the home we spend so much time in because we just don't go out that much anymore, we decided to stop putting it off until we can "buy" something and went for it. We picked out the wall colors, from mossy green to china blue, deep caramel and candlelit glow, and set about transforming our white-walled adobe into a backdrop of color. Painting is fun yet exhaustive, especially with all the prep work involved. As it turns out we enjoy a few days of fun and spending time together painting the different rooms and hallways a variety of colors. There were a few mishaps along the way. Unfortunately he did not discover the edger-on-rollers until the last room and my dear husband spent an entire Saturday painting our bedroom the most putrid color of yellow while I was at work. Actually it was more of a "goldenrod" color, mimicking the brownish greenish ugly yellow of copy transfers. One pink, one white, and one that goldenrod color. It actually made you want to leave the room. I really choked on picking out that one, but mistakes do happen, and that had to be repainted. Otherwise there was only one other mishap that was quite hilarious and has since become a family metaphor, a joke around here.

We painted the kitchen and front bath green. There are sofits in the kitchen so we had to make clear distinctions where the sofit ended and either ceiling or wall began. We had decided not to paint any of the ceilings, for it was too much of a hassle, and I was already bent out of shape about how we were going to actually execute  painting the entire apartment back to white while moving, which is in and of itself exhausting. My husband finished the kitchen and started on the bathroom. And as he is rolling his big green roller across the wall we are having a conversation. About what I cannot remember, but I am standing in the doorway and we are chatting and he absentmindedly takes one huge rolling sweep across the ceiling of the bathroom, forgetting he is not still in the kitchen painting the sofits. We both look at each other a little suddenly, eyes wide, as it dawns on us he had just marred the white ceiling with a giant blob of green paint. He looks at it with defeat on his face, trying to figure out how to correct this mistake, knowing this is yet another hassle to deal with. And as he looks over at me, giggles starting to burst out of both of us, I say, "Well, you might as well paint the whole ceiling then!" and we burst out laughing.

"You might as well paint the ceiling" has become our inside joke, a metaphor for turning lemons into lemonade, accepting what is and making the best out of it. There are countless times in life where what you have planned is not what happens, and you can either relax, find the amusement it in, embrace it or get all uptight and stressed out and pissed off. I have learned, through countless illnesses, there are very few things in life worth getting stressed out over. Yes, health is one, both yours and your families. Enough money to keep the roof over your head, lights turned on and food in the fridge is critical, but after that it really becomes semantics. Having good days, having bad days, that is all part of life. But I know I have a tendency to take small little upsets and build a big mountain of frustration out of them. I can't help it, its in my nature. So when I get all cranky, going off on a tangent, ranting and raving and carrying on like a mad woman, my husband will often look at me and say, "You might as well paint the ceiling", and it reminds me to relax, calm down and not take everything so seriously. And I actually have to admit, my very green bathroom with its very green walls and ceiling that make you feel as though you are in a cave, looks pretty darn good.

Thanks for joining,

Monday, April 4, 2011

The Court Of Public Opinion

I was watching an episode of Law & Order the other night and there was a scene where they drag in a very popular and quite controversial blogger, collaring him for committing a crime. See he had quite a few virtual "enemies" and one had turned up dead. He looked at the cops and blatantly laughed in their faces. He said the negative press was almost better than the positive, it brought him tons of new readers. For once they got to his blog, checking out this rumored monster, they discovered he was not at all what he had been set up to be. He happily proclaimed this was quite a contributing factor in his popularity and expanding his audience. I marveled at his attitude and mentally flogged myself for all the pain and "taking it personally" I have indulged in every time controversy or hate has come my way. I also decided then and there I was going to take his attitude and adopt it as my new child. Or the writers of Law & Order's attitude, as he was just the actor portraying what they had written. In the 8 months I have been blogging, which led to The Fibromyalgia Crusade and the selling of awareness merchandise, I have had quite a few shit-slingers flinging it smack-dab in the middle of my direction. In fact, I had a nice little tango with one just last week.

I did some probing and as far as I can tell there is no official "I Hate Leah Tyler" fan page, yet. But I discovered plenty of "bad press" all over the place. Pages and pages written taking innocent 3-line postings and ripping them apart word by word, with a clearly mentally ill mind contorting each statement to fit into their warped mission to discredit me. Pleas to boycott my products because I am swindling sick people out of their badly needed money so I can pile it on top of my abundant riches. Accusations that I am not honest or doing enough for Fibromyalgia awareness or not focusing my efforts in the direction they thought I should. I was not at all surprised the nature of all this hate dwindled down to sources totaling less than the fingers on one hand. Sources that have come at me publicly but I shut down, for my mission, my quest for Fibromyalgia awareness is not about just one person. The Fibromyalgia Fun House is not a crazy person dumping ground, a place to spew hate and stir up a bee hive of chaos, causing stress to its members that are truly there for support and understanding, not pining for attention. I myself am not a human punching bag with which one can funnel their anger through, blaming their lifetime of injustices and problems on. And all of this discovery took me on a mental journey, beginning with the 28 year-old girl that became sick one day and never got better, and the many steps that have been taken to form her into the 34 year-old woman that somehow feels competent and strong enough to rally up the troops and march the reality of living with Fibromyalgia into a new day.

The court of public opinion is such a harsh place, as those with this diagnosed-yet-cause-unconfirmed illness know first hand. Everyone is a doctor. Everyone knows someone who had Fibromyalgia and got better from (insert potion, attitude change, diet, etc.). And then there is my all time favorite, I don't believe in Fibromyalgia. What we endure on a daily basis, just trying to win the approval to be sick from the world at large, our family, friends, doctors and neighbors, would not be tolerated if it was racially or religiously or gender targeted. Yet somehow on top of our debilitating illness we must also contend with nastiness arrows shooting at us from every direction. There is a significant amount of "toughening up" we all must rise to in order to survive life with Fibromyalgia. Pretty hard when your adrenals are shot and simply having the TV on and someone talking to you at the same times sends you into a stressed out meltdown. But it is a very necessary step to begin the process of learning how to live a new kind of life, a life with the Fibro beast managed

But just for clarity's sake I want to take a moment to set a few things straight. The Fibromyalgia Crusade is a patient united awareness campaign. This involves taking personal responsibility for the quality of your life, joining up with other patients for support, refusing to be treated like shit by anyone in your life because they do not understand your illness and spreading awareness by speaking the truth. Not shying away from Fibro but letting those you come into contact with know what it is and how difficult it makes living life. The Fibromyalgia Crusade has never and will never cost money to become a part of. Purchasing the tee shirts and awareness bands and other items that will be coming is optional and in no way a requirement to play at our party. They simply spread awareness and give us a feeling of connectedness to each other. We are small and young, just getting started. There will be many more components to come in due time. Each person can take part in what they are comfortable with, and should not feel pressure to jump through hoops to prove the authenticity of their commitment to spreading Fibromyalgia awareness. We do not exist to aggravate your symptoms or diminish your self-worth. We are here to let the world know Fibromyalgia is real, a real pain, and we are suffering and enduring the best we can but need help, need answers, need to get better! And really need to be taken seriously. So as you learn how to handle your haters, I am learning how to handle mine. And strangely enough, I am looking forward to the I Hate Leah Tyler fan page, for think of all the interest that will send our way!

Thanks for joining,

Sunday, April 3, 2011

Hot Tub Time Machine (August 6, 2010)

I must be the only person in the world that cried at the end of Hot Tub Time Machine. I sat there with my husband and friend laughing at me in an understanding way as I poured out my feelings of bewilderment and regret. How was I sitting on my sofa 2 days past my 34th birthday, having recently survived 2 strokes, with 4 pancreatitis hospitalizations and a debilitating virus under my belt, and a mysterious neurological condition still plaguing my present (Fibromyalgia)? I flashed back to my own high-school and college years and marveled at the road I have traveled. Through the result of a wild and unstable upbringing, this intelligent and under-challenged joven began self-medicating at the crest of puberty, only slowing down after my first near-death experience at age 28. I was a wild and daring child, always pushing the envelope of acceptable. I put my parents through hell and strove to define myself in the extremes during my teenage years. I was on alcohol and drugs, dating much older guys and breaking curfew and sneaking out. Oh I was willfully disobedient. How they still love me is only by the grace of God, that unconditional-love parent thing or something. Thankfully my family had the foresight to encourage a trip to Europe the summer between my junior and senior years of high-school, a trip that saved my life. It gave me exposure to the world, different languages, cultures, ways of living, perceptions, experiences...a whole different future. I went home with a stick up my ass, thumbing my nose at my friends running around middle-class suburbia in their cigarette-smoke steeped flannel shirts, getting high at their Nirvana grunge kegger parties. I thought I was so beyond them. I was worldly now, I had tasted it and wanted more.

I entered my senior year of high school actually wanting to know some people at my 10-year reunion and stepped a bit away from my wayward party friends, becoming the photo editor of the yearbook and hanging out with kids my own age. I went to Senior Ball and did all those quintessential high-school things memories are made of. I found my way to college and by then had stepped off the drug train, but indulged in alcohol and weed to a severe excess (it was college, after all). This continued on until pancreatitis caught my attention. Since then it has been a constant battle to allow myself to feel and survive the emotions without rushing to dull the pain, the sheer pain of what simply feeling means to me.

So as I watched this group of jack-ass guys, miserable 20 years after youth had launched, bumbling around back in time like moronic teenagers, seeing how much what was becomes what is, I became overwhelmed with feelings of regret and remorse. Have I done this to myself? Did I cause all of these serious health problems during my youth of excess that are now manifesting themselves on my still very young body? If so, knowing what I know now, would I have done it any different? So as the tears sprung I poured out my heart. I know the one right thing I have done in my life was marry my husband, and that relationship was born of this youth I want so badly to regret, to blame. As I settled down I concluded that no, most likely I would not have done one damn thing different. Youth is dumb, pain is real, and all I can do now is pray that by the grace of God I can find that path I was created to follow, step on and go for that ride.

Thanks for joining,

Saturday, April 2, 2011

The Blue Angels (Repost from 8/14/10)

Back in 2006 the U.S. Navy's Flight Demonstration Squadron, known as the Blue Angels, were scheduled to dart, bob and weave over North Beach in San Francisco during their annual show-stopping display. It was a performance I had seen many times before, simply walking up to my apartment rooftop and gazing across the magnificent San Francisco Bay, enjoying the rush of excitement and closeness to the frenzied action as the planes thundered and nose-dived on top of me, pulling up and away at just the last second of safety, or so it felt. My husband, sadly, had not been so lucky. Our years in San Francisco were harried and intense for him as he pursued 2 finance bachelors degrees full-time while working full-time as well. He was very busy and missed most of the uniquely San Francisco weekend experiences due to fulfillment of his hectic responsibilities. But he had now graduated and we had moved to the Peninsula, and despite my mounting mystery sickness had scheduled a chiropractor appointment in the City with a leisurely afternoon of Blue Angels viewing and city-hangin'.

But I just could not do it. Just attending the chiropractic appointment took every ounce of energy my Fibromyalgia-Chronic Fatigue Syndrome-racked body possessed. And as we left Pacific Heights and headed toward North Beach tears sprung from my eyes. I could barely move, and I knew how excited to finally see this magnificent display he was, and how badly he needed a day of fun to mix up his long work days and stress from my increasing health woe's. There was not 1 ounce of anything I could pull from myself to proceed with our plans, and as I sobbed out my needs I visibly watched the life drain from his body as he slumped over the steering wheel and set his jaw in a tensely-bound square. The guilt radiating from my body matched the despair shock-waving from his as he turned the car toward home. I knew I was ruining his life and was powerless to stop it. I begged and pleaded with him to understand, get in my head and see how bad off I was, not giving him the right to his own feelings of anger and frustration he was so badly due.

This is but 1 of the countless multitude of times my health problems screwed up our plans for life. But the memory is so acute, so pointed. Such a glowing example of what these diseases rob from you and yours. The people we depend on so desperately to get us through, shelter our sick and throbbing bodies from the harshness of the outside world. It has taken me years to get out of my own head and begin to let him feel his feelings. Feelings he compressed deep inside and shoved out of the way because it was just not practical for us both to fall apart at the same time, not possible. I did him a major disservice, but believe I did the best I could at the time. As my health returns and light and laughter and springing steps once again envelope our union, his tightly-wound and deeply suppressed emotions are rushing forward. And I must deal with them. I must encourage him to talk about it, tell me how mad he is at me for getting sick, knowing it was not my fault, and then feeling guilty for his anger. I must listen as he pours out his frustration and sorrow he was forced to bottle up inside for so many years because everything was simply about me. I must listen with compassion and grace and understanding and NOT OWN THIS, not get defensive or feel guilty or take it personally. This is simply and truthfully what happened to us, and we must process and move on. For it is in living and rejoicing in the now that we can heal the past. But I have not forgotten what I owe him, a Blue Angels nose dive on top of his head, and one day soon I hope to replace that painful and missing experience. Do the Blue Angels come to Arizona?

Thanks for joining,