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,

Leah

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,

Leah

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 with...health 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,

Leah

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,

Leah

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,

Leah

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,

Leah