I Have Lost My Imagination

I spent last night watching the Oscar's. Indulging in the land of the beautiful and glittery, wealthy and connected, mesmerized by what blessed imagination can create. Imagination with no reality cap to reign it in. And it made me realize I have lost my imagination, my playfulness, my belief in a land of rainbows and unicorns. Waking up in the middle of the night and hurting so bad that rolling over to the other side feels like dying. Working so hard to deny this illness had me it its grip, I pushed myself into an emotional breakdown. Every day fighting with myself to remain relevant. A wife, a daughter, a sister, a friend. An employee, a customer, a person. Each yes to an invitation turning into a tearful no at the last minute because I simply could not get it together enough to walk out the door. So many extend-a-stays in the hospital. Pain-killers, drugs, meds, vitamins, all a big experiment to see what is going to work, meanwhile side-effects take over my life. This is hard. We know it, we live it. This is really really hard.

But there is a little kernel of game left inside of me. It comes out when my pain is managed, I have not over-committed and I am in a safe place with safe people. It shows itself when I feel secure and trusting, have had enough sleep and don't have troubles plaguing the forefront of my mind. When I am relaxed, when I am happy. That is when I see the me I remember being before life got hard. Before I became an adult and the reality of exactly what it takes to make it in this world became my reality. Before I got sick and it became all about survival, frivolity no more.

I want my imagination back! I want to laugh and giggle and be silly. I want to dream and work hard and watch it come to fruition. I want my difficulties in life to be normal difficulties, not those of the chronically ill. I want fun! I want to skip down that yellow brick road of possibility in life, not barely hang on by a shoestring. I want to go places and meet people and be spontaneous! Some of the best experiences of my life have been on the back of spontaneity. I want to do a body exchange with a healthy person (skinny would be good too) and run and jump and play my life away! Alas, unfortunately that is not the course I am on right now, and it is frustrating. But I refuse to give up, accept pain and defeat as the sum of my existence. So I am going to pop that kernel, and force the seriousness and sheer misery of life away for a little while. I am going to pop up a whole bucket of kernels and remember what it is like to have fun and be carefree and laugh, not because something is ironically funny but because it truly just is.

Thanks for joining,

Leah

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A Doozie Of A Day

Oh my dear friends, I write to you with a very mixed up countenance right now. My husband and I have been having problems with Saturday mornings. I have worked on Saturdays practically since before we were married. Now I work from home and am my own boss. The success or failure of my venture lies entirely in my hands. If I "work" it seems to be working quite well. If I don't I imagine it would not. He works ridiculous hours, 5am to 6pm Monday through Friday, and does not get enough sleep. Then when he sleeps late on Saturday mornings he gets upset that his day is nearly gone by the time he wakes up. He wants to get up, get going, and get out the door like he does every other day of the week. But this time he wants to go enjoy his life. Who can blame him? Well I can tell you how incredibly difficult that scenario is for this Fibrate, unless you are one and already know firsthand. I need to wake up slowly, scratch some puppy belly and maybe a little behind the ears. See what is going on in the Fun part of the house, stretch, drink my coffee, eat some cereal so I can take my vitamins and get myself ready. You know, a few hours of leisurely primping me and my life. Rushing any more than that creates consequences. Consequences that hurt. Yet you can imagine this leaves my husband waiting around for me for quite some time, asking "How much longer?" or "When do you think you are going to be ready?" every 30 SECONDS!!! Tensions have been building for some time now and this morning the balloon burst. 

I woke up just after he did, a bit after 11am. Usually on Saturday mornings we go to the coffee shop and then the dog park. We mumbled something about getting up and going and I said I could be ready to go in about 25 minutes, and went to go jump in the shower. As I was getting in I remembered the Scottish festival my mom had told me loads of family were coming in for. I told my husband to call her and got in under that steaming stream of muscle soothing hot water. The next thing I know I am supposed to be ready in 25 minutes to leave for the Scottish Festival all day and we are taking the dogs and we need to go to the bank and do we have chairs we can bring (?) and go go go! It looks gloomy and cold outside and is predicted to be a damp, rain a comin' day. My hip is throbbing and everything else just hurts. I jump on here, realizing I am not even going to have time to read posts, let alone blog, and start rush rush a rushin'! Finally I get so pissed off like I do every Saturday when our expectations just don't jive, and I am in so much freakin' pain that I start bitching. I unload every pent up emotion surrounding this aspect of our life through body shaking sobs and very quickly we are in a big ol' fight. Somehow we make it to the dog park, we come home and like usual it is 2 in the afternoon and I have not had a bite to eat or my vitamins and meds and feel horrible. I am in major self-destructo mode and know I cannot sit there fighting with him so I freak out, grab my purse, tell him I am leaving and will be back later as I slam the door with a nice dramatic flair.

I go to Denny's. I drink coffee, cry, talk on the phone, eat, take something for the pain at last, knowing that is in some way responsible for my hypersensitive reactions. Then I go to pay. And I don't have my wallet. So this terrible run-away wife has to call her husband to come pay her bill at Denny's! At this point I am talking to my mom and she is laughing at what a silly predicament I have put myself in. He comes, he pays, we talk, we acquiesce, both in areas that are necessary. And we decide since Saturday is a work day for me and he is not getting his personal stuff done over the weekends that on Saturdays I work and he does his stuff till 4 but from 4 o' clock on through Sunday night it is exclusively family time solamente. And no, we never made it to the Scottish Festival. But we did something far better. We made up ;)

Thanks for joining,

Leah

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I Graduated!

I am overwhelmingly happy to report that I have graduated from being a Neurological patient for 2 sudden and painful strokes I had last summer! My Neurologist will see me on an "as needed" basis and is taking me off the last medication he was treating me with. He was quite impressed with my progress and lack of lingering complications. I am utterly grateful! The probability of it happening again is as close to nil as you can get so hopefully I see him again never! I told him all about The Fibromyalgia Crusade and gave him a postcard and explained Lilac, Mulberry, Amethyst, the blog, the support site on Facebook, the whole shebang. He was quite interested in it. According to him Fibro will continue to remain a Rheumatoid diagnosis and not Neurological. He gave me the classic description of the 1990 American College of Rheumatoidology criteria for diagnosis. So that shows you how quickly these new thoughts, studies and trials hit the doctors in practice.

Other aspects of my day were hard. I have bad habits, bad discipline, and it is holding me back from all I want to achieve. I had a window of a phase of intense productivity recently and it reminded me of my former self, the one that ran herself into the ground and got CFS and Fibro. I was productive and woke up each morning with a spring in my step (okay so maybe that is not a former habit but I was on Prednisone after all) and got things done. Right now I sleep until nearly noon if you let me, don't want to go to bed at night, am sporadic with walking the dogs, I need to do laundry, my house is a mess and I have more paperwork than I know what to do with. Oh, and if I don't give myself a pedicure soon I am going to be able to cut that paperwork with my overgrown, curling toenails! It is almost like starting to learn how to manage chronic illness all over again when I am already a day late to class, but it is a class I have taken before. Always learning how to adapt to revolving symptoms and fluctuating circumstances. Is this what healthy people do? Are they required to roll with what life gives them or do they captain their own vessel? I am craving intense routine and discipline but at this point it would take a drill Sergeant standing over me and shouting my next activity off the type "A" list I cannot get away from, for me to follow any sort of regiment.

When I cleaned my memory boxes from my youth out of my parents garage in preparation for the sale of the house I read some bits and pieces from some old diaries I came across. I was amused and not too shocked to find the same list of "to do's" from high school are amazingly similar to the ones I struggle with today. Get up earlier, be more organized, do my homework before going to ...?, get to bed earlier, lose weight, exercise more and eat less. Do my laundry more often and keep my room clean. So the question authentically popped into my head; do I give in to what is apparently a lifetime of hard-wiring, accepting that this is just who I am and I am not going to be organized or live in a clean house or any of the other 50 things I could do better? Or do I keep practicing and pushing and dusting myself off the horse of perfection just to get right back on and try again tomorrow? I am sure the answer lies somewhere in the middle and I will spend the rest of my life trying to figure it out. Right now, I think I am going to go meditate for a while.

Thanks for joining,

Leah

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Chronic Fatigue Syndrome And Me

I am frequently asked how I got better, recovered, managed, etc. from Chronic Fatigue Syndrome and Fibromyalgia. Before I launch into a detailed account of my experience I am giving a few disclaimers:

1. This is my personal experience and what worked for ME specifically. I was under the care of a doctor the entire time. Do not assume the same results for yourself and ALWAYS consult your doctor before beginning or stopping any treatment.
2. I believe there may be a few different diseases that share symptoms and are bunched under the diagnosis of CFS and FM. I also believe they are separate diseases from each other and subscribe to the "suppressed immune system as the point of entry" school of thought.
3. I currently consider CFS in remission and FM managed. Unfortunately they don't just "go away", and learning to live at a diminished capacity is a very frustrating experience.

After seeing many doctors, taking a multitude of blood tests and undergoing oodles of scans and imaging I still turned up as healthy as an ox on paper. Most of you have been through this. Yet I was sick and disabled and emotionally spent. I had limped along living half a life while still trying to fulfill my full-time obligations. It about took me under and after I had a complete emotional breakdown and went out on disability I started researching outside the confines of modern medicine. The book From Fatigued To Fantastic was a Godsend to me and opened my eyes to the truth of what was going on with my body. The symptoms he described, the wide breadth of their consequences on my health, oh the reality of what was happening to me was staggering! I was game, I was ready to try all the methods he recommended but needed a doctor to walk this walk with me. I need blood tests and prescriptions and a physician that knew more about this than I did! After a search for one that took my insurance in my area turned up nil I decided to go with The Fibromyalgia & Fatigue Center in Las Vegas. I knew it was going to be expensive. I knew it was horribly inconvenient, for I was living in San Francisco at the time. But I had to go, could not face one more "audition" with a doctor that knew nothing about what was happening to me. I could not listen to one more tell me I was fine. I needed the best of both modern and holistic medicine and that is what they offered.

31 vials of blood! That is what they took on my first visit. My appointment was a full hour long of questions and answers and poking and prodding and inspecting my eyebrows and fingernails, thumping on my reflexes and actually listening to me as I explained my symptoms and the destruction of my life. The first order of business was a bag full of expensive supplements and prescriptions for bio-identical thyroid medication and cortisol to treat my exhausted adrenal glands. They explained what had happened to me. Long-term sleep disturbance + severe Pancreatitis = Depressed immune system + Genetic pre-disposition = an open door for a multitude of viral, bacterial and fungal infections + trigger event = CHRONIC FATIGUE SYNDROME! I spent that first month boosting up my immune system and immediately felt a bit better from the bio-identical thyroid. At my next appointment I learned I had the Human Growth Hormone level of an 86 year old (I was 29), was suffering from a bad fungal infection, had pretty much NO testosterone (my husband was glad to hear that as explanation for our compromised sex life) and all sorts of other problems. I was extremely immune suppressed and spent the next few months building it back up. My regular doctor threw a fit when I told him all about this.

My immune system improved yet my symptoms of fatigue and pain were still extremely debilitating. I was tested for a variety of viral and bacterial infections and switched from Diflucan for the candida to Ketoconozole because what I had was strain-resistant. The tests came back and my infection numbers were off the charts! Viruses are tricky. Once you are exposed you always have it lying dormant in your body. Standard blood tests check for a "new" infection, but I had these viruses for a while and they were not showing up. Its the latent infection that was causing symptoms, the infections were on top of my immune system, and that is what the FFC finally uncovered. I was suffering from Epstein-Barr (EBV), Cytomegalovirus (CMV aka HHV-5), Human Herpes Virus-6 (HHV-6), a bad bacterial infection and I am sure more. I would just have to dig through all my paperwork to be exact and that ain't happenin' today. But don't let the word herpes fool you, none of these are sexually transmitted.

I was started on Valtrex for the viral and Zithromax for the bacterial. OHMYGOD I hurt! I was back at work at this point and could feel the infections and medication battling for control inside my body! HHV-6, a little bugger that inserts itself in the nucleus of the cells and is darn near impossible to get rid of, was a suspected culprit of CFS at this time. Stanford Hospital was running a clinical drug trial on Valcyte as treatment for a CFS subset called Viral Induced Central Nervous System Dysfunction (VICD) and I was evaluated and tested there as well. I did not participate in their clinical trial because I was using Valtrex for cold sores and shingles (HHV-1 and 3. How much HHV can 1 girl have?). However, my doctor at the FFC prescribed it and by the grace of God my insurance paid for it. Then came another Pancreatitis hospitalization, another month on Valcyte, weekly blood tests on my liver and low and behold my immune system jumped on top of those viruses and I had (most of) my energy back! The Stanford drug trial did not turn out the way they had hoped, but when I was tested again my numbers were significantly lower. It had worked for me.

But all was not over in this 7th circle of hell I was for some reason chosen to walk through. HHV-6 infected my central nervous system for so long before I was treated that it left me with good old fashioned Fibromyalgia from nerve damage as a friendly reminder that this was far from over. That took another few years to get under control and still plagues me to this day. I had 2 strokes at the end of July last year and the treatment has sent Fibro into a tailspin! So I am working on getting back to "managed". I have found if I respect my 5 pointed star of health; sleep, diet, exercise, stress management an hormonal balance, Fibro is weak. If I slack off, Fibro is strong. So the journey is never-ending. This is my story. Each and every one of you out there have a story to tell too. Keep searching for answers, educating yourself, seeking treatment from supportive doctors and believing they will one day find the source of our pain, and then find a way to treat it. If I can share any wisdom gleaned from this experience it is to take yourself seriously and not push through or power it out. I firmly believe if I had realized the gravity in the beginning and had gotten off the hamster wheel of life I would have saved myself years of pain and anguish. Your symptoms are real. Find a doctor that believes that and will go the distance with you. And may God bless you on your journey.

Thanks for joining,

Leah

For Tee Shirts and Awareness Bands:
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When The Type "A" Gets Fibromyalgia

I can say the 1 good thing about my uber intense type A personality is that when I got sick there was no doubt in my husband's head I was sick. Watching me struggle up the stairs with a laundry basket, empty the dishwasher, cook a meal, make a bed, he knew something was seriously wrong. So simple and basic. I used to do those things in my sleep, with my eyes shut AND one hand tied behind my back! I thank God he never doubted me because everyone else I knew just did not get it. I know many of you struggle for spousal or partner support or have been left in the lurch by someone who "did not sign up for this". I can only imagine the pain and heartache and ANGER that must incite. But I know beyond the shadow of a reasonable doubt that I would not be sitting here today if it were not for the fact that he needed me as much as I needed him and we clung together through the storm of CFS and Fibromyalgia. Two little dinghies out at sea, sputtering to stay above water while a rip tide was pulling us down. Somehow we made it to the other side and washed up on the shore barely intact. Bruised, beaten and battered, but still alive. He has been to doctor appointments with me to try and convince the doctor this was not just depression. He had seen me depressed and this was something physical. Lots of good that did.

So riddle me this, all you former type A Fibrates. Does sitting around in pain and watching your life flush down the toilet of, well, life make you feel good? Does the fact you can barely work, sleep, cook, clean, parent or do anything else you did with vigilant ease before make you happy? I cannot for the life of me figure out why we are doubted and questioned so by those that knew us before we got sick? A person's personality does not change that much, it just does not! And how has the medical community pushed us aside, millions of strangers all complaining about a similar set of symptoms? How have they not by now recognized the multitude of Neurological illnesses that were "blamed on the patient" until science was finally able to source something concrete and stopped that practice? Are we all sitting back on our laurels laughing and rejoicing that we have pulled off the greatest hoax known to man? We have "gotten" out of all of our responsibility in life because we were smart enough to make up an illness no one can prove? Oh don't get me started, don't even get me started!

To me the A's are the doers in life, the B's the thinkers. We need them both. When I got sick I tried so hard to turn this A to a B. I tried so hard not to notice every little spec on the carpet I was too sick to vacuum. I tried to ignore the pile of dishes needing to go into the dishwasher full of clean ones. I pretended laundry did not exist. I tried to mellow out! I may have succeeded a little but then had 2 strokes and 6 months on Prednisone sent that "A" monster into overdrive! I was walking 7 days a week after springing out of bed at 7:30 every morning, doing strengthening yoga right after without a seconds hesitation. My house was clean, dogs were bathed, laundry was done, bills were paid, I was cooking complex and delicious dinners every single night, oh it felt oh so good. For the one second manic overdrive would let me think of it! Then it was on to the next thing. I do have to thank Prednisone for 1 thing (besides saving my life after the strokes) and that is The Fibromyalgia Crusade. Had I not been so full of YANG I would not have whipped up this awareness campaign and gotten it established to the point that we are ready to springboard into action! I am now off steroids and my repressed A is making peace with her default B. For now the pain is back, the stiffness, the fatigue and fog and I am moving much slower. But it is different now, because it is not just me. We are building and growing and there is a whole army behind me. They will soon find out they messed with the wrong personality!

Thanks for joining,

Leah

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What Gets Your Energy?

In a far-away place called San Francisco, in the decade of the turn of the century, I worked as a retail manager in cosmetics at a national department store. It was wild! Lots of action, lots of drama. It was a high-profile promotion position and there were frequent meetings with the Vice Presidents of various divisions and their entourage of executives. We were developed as floor managers to coach our team of 12-14 cosmetic girls equally, often times spending more of our energy and resources on those which were not producing, out of sheer necessity. Each of these adult women had a distinct personality, way of selling and method to conducting their business. They ran the spectrum on sales talent. Some were nation-wide top producers and others did not achieve nearly half their goal. Trust me, with some of them is was like trying to squeeze blood from a turnip.

Then some brainiac executive woke up one morning with a revelation! Needless to say, since that time we were trained to pour that energy we were spending on the under-performers into the top-producers since they were the ones that were bringing us the best result. I don't remember the outcome, it was many lifetimes ago (or so it feels). But something made me flash to that memory today. And I realized there was a good message attached to their sales technique. We all have things we are dealing with, struggling behind, hurting from. Oh we try with all our might to mitigate pain and anguish from our lives. But there are a few small things in each of our lives that are good for us and we do them well. I believe the next logical step in this argument is that if we focus on what is right in our lives and pour our limited strength and energy into those things, instead of what is wrong, we will get a lot further.

Thanks for joining,

Leah

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The Best Revenge Is A Life Well Lived (Repost from December 23, 2010)

Yin Yang is an ancient Chinese philosophy "used to describe how polar or seemingly contrary forces are interconnected and interdependent in the natural world, and how they give rise to each other in turn. Opposites thus only exist in relation to each other."* Yin represents dark, passive, downward, cold, contracting and weak. Yang stands for bright, active, upward, hot, expanding and strong. As you can see too much of one is not a good thing, it is the BALANCE we strive for. For it is in assuming components of each we seek out to maintain order in our world. When one is sick as can be; downward, cold, contracting and weak, it is the infusion of the opposite that will return health. But if the upward, hot, expanding and strong take over, balance has not been restored and health will not prevail, manic will! As we struggle to find a way to restore equilibrium and wellness to our lives we doubtlessly encounter many difficulties along the way. None are more emotionally devastating than the reactions, criticisms and judgments of people. Be it family, friends, strangers or co-workers, we are desperate for compassion and understanding, yet seldom find it. What we seem to find plenty of is negativity. So in an effort to "yin yang" that negativity we must infuse positivity!

"What, is she nuts?" you might ask. "I am the one that is sick and hurting, cannot function, work, take care of myself or my family, and now I am the one that is supposed to bring positivity to the table?!" And I am saying YES, you are! And for that exact reason, you are the one that is sick! You are the one that cannot deal with stress, trauma, judgment or devastation. All of your energy is already being used up to exist with your illness. You do not have any to give the cold, dank and dark in life. Can you build a little bubble of goodness to live in, ignoring the ignorant and hateful? Can you refuse to listen to or surround yourself with those that will doubtlessly put you down or criticize you? Can you listen to someone spew hate and anger and mean nasty things at you and simply walk away with a smile on your face, knowing they DO NOT MATTER? That is a question only you can answer for yourself. But I can tell you I sure can! I can let it roll off my back, bounce off my bubble and back onto them, not permeate my reality because I have too much else to focus on. Managing my health is darn near a full-time job, then there is work and family responsibilities and that wonderful quality of life issue. I am way to busy living my life to take the time to listen to the haters and inciters of this world. Let them exist in their small-minded misery. Let them swim in the cesspool of crap they are eternally stuck in, their negativity and anger sucking them deeper and deeper until they eventually destroy themselves. You need not spend one second more of your precious energy or positivity on them. Only focus on you.

For it is in living well that the best revenge is served. It is in not caring or allowing the bad in life to take you down that you prevail. It is in walking away and not giving it one more thought that you overcome their negativity. Arm yourself with a few short replies to the myriad of off-putting comments that will come at you and then become an expert at CHANGING THE SUBJECT or simply walking away. This is one more step in The Fibromyalgia Crusade. One more step to getting our lives back. One more step to taking control. Eleanor Roosevelt said it best; "No one can make you feel inferior without your consent." There is such deep truth in that statement. Stand strong my soldiers! One thing I have learned in the 4 short months this blog has been public is the storms rise up like clock-work. Everything will be calm and good for a few days and I will think in the back of my mind, "What's next, where is the next upset going to come from?" And sure enough, it comes. Again and again. I can only assume these are the lessons I must learn in life in order to move forward. But I cannot get stuck, tangled up in them, or I will never reach my full purpose, fulfill my destiny. We have each other, some are lucky enough to have friends or family that support them, but most of all you have yourself. The one person that will always be there for you, understand you and love you. But only if you make 'em!

Thanks for joining,
Leah

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*http://en.wikipedia.org/wiki/Yin_and_yang

What Exactly Is This Fibromyalgia Crusade Anyway?

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 4 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 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 "Annoy Your Government" letter campaign. More information to follow.
• Participate in good doctor thank you letters and bad doctor shame on you letters. More to follow.

We are 5 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,

Leah

For Tee Shirts and Awareness Bands:
http://leahtyler.com/Purple_Pain_Code.html 

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

The Garden Of Good And Evil

I am sitting here trying with all my might to write a positive post about something Fibro related and put an encouraging, uplifting spin on it and I simply cannot. I cannot betray my heart, for right now I am in mourning. I am grieving the loss of the illusion of many friendships, supporters, Fibro-family members. Last week the Fun House took a huge hit. I marvel at the fact that people are so convoluted. They use a health support site on Facebook to conduct their lives. And then one person gets pissed off at another and everyone starts fighting and before you know it the group has been divided and we are set back on our fight for Fibro tremendously. THIS IS THE EXACT REASON I STARTED THIS WHOLE THING IN THE FIRST PLACE! Fibro knowledge is what it is [not] today because the patients are so busy fighting with each other they can't get it together enough to advance their cause, promote the need this illness so desperately carries with it, advocate for funding and awareness. So yes, I blame the Fibromyalgia patient body directly for the lack of advancement in understanding the cause or finding a cure for this illness. We have left it up to chance. A doctor that may want to find more out about this. A drug company that may have a drug to sell that treats the symptoms. A Senator that may know someone who has it. And that is pretty much it! I have in the past apologized for getting my Fibro managed and then shutting that door of my life and running on to the next thing. I am as much to blame as any other Fibro patient. It may have taken 2 strokes to wake me up, but now I am trying to do something about it!

It is pathetic to see a group of grown adults playing silly games with a support-page I created so people could have a place to go to vent, cry, laugh and feel understood. Something many of us are lacking in our personal lives. Now the Fun House is no longer a safe place. People post and are attacked in private message. Private messages are posted on public walls. Rumors abound that I am just in this for the money. Suddenly I have become a perpetrator, preying on the ill, the disenfranchised, and am exploiting them for my own gain. Mind you what I have spent on this business is far more than I have made. Oh yeah, and I have turned down thousands of dollars in donations because I am not yet a non-profit and felt an ethical conflict. But go ahead and keep believing I am "only in this for the money", be my guest. The reality is, all of this rolled up into itself, there are a good number of Fun House members that have destroyed the safe haven so many others were beginning to depend on. All I have to say is shame on you and grow-up or get out of my house!

So here is the bottom line. The Fibromyalgia Crusade is NOT going away. Ever. I will continue to rally up enough people that we will make a difference for Fibromyalgia patients worldwide. The Fibromyalgia Fun House is NOT going away. And I am not going to become a censorship vigilante either. If you do not believe in the purity of my intentions, get out of my house and quit reading my blogs. If you cannot restrain yourself from badgering and bullying others, get out of my house. If playground games and getting people "on your side" is the position you operate from, get out of my house. If you are so easily led and distracted from our true intentions, go on, get out of my house! I am building an army that is going to fight a Crusade for Fibromyalgia awareness. If you are not in then you are out. My conscience is clear. My motives are pure. My intentions are real and honest. A few years down the road The Fibromyalgia Crusade will be all over the place. We are going to grow into a huge awareness army and anywhere you look you will find us. People will know what Fibromyalgia is and doctors will stop treating us like pathetic ninnies. When that time comes the joke will be on all of you that in one way or another tried to destroy me, my blog or the Fun House. NO one is going to destroy this. Ironically enough, you will still benefit from our hard work. And for all you dear souls that are reading this with a clean conscience and pure heart, wondering what on earth is going on, let's just say that I am weeding the garden and don't give it another thought.

Thanks for joining,

Leah

For Tee Shirts and Awareness Bands: 

http://leahtyler.com/Purple_Pain_Code.html

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

In My Life

Though I know I'll never lose affection

For people and things that went before

I know I'll often stop and think about them

In my life I love you more. ~ The Beatles

We have been up and running for 6 months now, and many people have come and gone. Some did not like the site, some felt ignored. Others got pissed off or pissed me (really) off and got banned. Some just did not get what they needed from my blogs or the Fun House and some had needs that changed, making the Facebook support site obsolete. The internet is an oddity. We are the first generations to experience the "virtual" world. A world where you are not judged by your skin color or accent or piercings or disabilities. A world where you can, technically, make yourself into anyone you want. Now this Facebook craze is a whole other ball-game. Actually socializing and becoming friends with some typed words and a picture. Forming attachments and a vested interest in the success or failure of people you have never met but have feelings for. Then put a bunch of sick people together for a support group and see how interesting that one gets!

When my blog went "live" in August my Facebook page quickly blew up. I started The Fibromyalgia Fun House. Then the miserable and desperate reality so many people with Fibro live with showed its true colors and I felt a strong pulling to see if an awareness campaign could not get stirred up with a little bit of frenzy and excitement. Sick people were facing horrible injustices and were too ill to do anything about it. I  had not only been where they were (or worse), but had my Fibro managed and wanted to be that strong voice that was so desperately needed. Whatever was currently in place was clearly not doing the trick. It eventually came time to go back to work but my readers of the blog and Facebook friends expressed an interest in tee-shirts to support the cause. I was, quite frankly, surprised! So many had found kindred spirits, understanding, compassion and a few giggles here and there, but I had no idea the esteemed regard in which it was held. I figured hey, if they will buy it I will keep blogging every day and set my sights on promoting The Fibromyalgia Crusade instead of going to work in some office here or there. I never represented this as anything other than a for-profit business, knowing the non-profit will come as soon as I can make it happen. But let me tell you, I have never worked as hard for so little money as I do now, promoting The Fibromyalgia Crusade and blogging every day.

A lot of the dear souls that were my biggest supporters in the beginning have gone away. Most have stayed. New friends have come on. Many more have yet to join. We have friends of every stage in the Fun House. Some for a reason, others for a season and yet still others for life. I have found when the negative haters come at you it is usually their unhappiness projected towards you. It is your choice to pick it up or not. We have had our ups and downs, lines have been drawn, friendships have been tested. But I am very pleased with the progress The Fibromyalgia Crusade is making and still very proud of The Fibromyalgia Fun House, the quality of people we have to hang out with whenever we need a laugh, a cry, or some big mixed up version of both! 

Thanks for joining,

Leah

For Tee Shirts and Awarreness Bands: 

http://leahtyler.com/Purple_Pain_Code.html

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

It's Tee Shirt Time!

After an abundance of empty time-frame promises, an unruly logo and all the other complications that go into producing a The Fibromyalgia Crusade shirt...they are finally here! And I think they look pretty darn amazing, if I do say so myself! Thank you my friends for the inspiration and dedication you have shown me through your kind words and positive affirmations. As you know we are planning for this campaign to go worldwide and have a huge impact on Fibromyalgia awareness. I believe this is only the beginning so in answer to your next question; YES, different styles will become available as demand dictates. Also, if you have a special request send me an email, you may not be the only one that wants that particular item!

I have selected The American Fibromyalgia Syndrome Association as the charity we will be donating a portion of our profits to until we form our own branch of non-profit. This is the research charity for The Fibromyalgia Network and I am impressed with their grass-roots successes, dedication to direct 90% of their donations and income directly to research and the breadth of small-scale projects they fund. My logic tells me greater success will come with more projects on a smaller scale than fewer projects on a larger level. Fibromyalgia research has a long way to go and needs all the help it can get. This in no way means there is anything wrong with the other Fibromyalgia groups and non-profits. Let's just say this one was a good fit.

So I hope you enjoy the tee shirts, have your postcards printed out and at the ready to be passed out when asked "What is The Fibromyalgia Crusade?". My next charge is to get on a quarterly synchronized "Annoy Your Government" letter campaign in order to make our 1 large, strong, unified voice impact our NIH funding and acknowledgment of May 12 as Fibromyalgia Awareness Day. So I will keep busy back here in the background, brainstorming and idea creating and strategizing our next move, always planning our next move. And trying to keep Yorkie & Porkie off those tee shirts organized and laid out nicely on the bed!

To purchase a The Fibromyalgia Crusade tee shirt:  http://leahtyler.com/Purple_Pain_Code.html

Thanks for joining,

Leah

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

Valentine's Ode To My Husband

In 2006 or early 2007 I was extremely ill with Chronic Fatigue Syndrome. I was on disability and losing my ability to function quickly. This was by far the most frustrating experience of my life. I had absolutely no control, not even the glimmer of an illusion of control. I was raking the web for any information I could find on how to get better from whatever was wrong with me, which was still TBD but had been ruled CFS after nothing else was wrong with me. One of the Chronic Fatigue Syndrome organizations sent an e-mail about a traveling CFIDS awareness exhibit. It was going to be showcased at a mall not far from where we lived. It was extremely important for me to see this. I needed to know who I was connected to. Who else was sick and had this with me. 

I dragged my CFS self around the mall, searching and asking where the exhibit was. Finally we found it. It was pathetic. It was hidden in some long upper hall entrance to a dowdy and boring department store. It was large cardboard pictures of people and their faces. And there was a brochure about  CFIDS. No one was even in echo distance. It was sad. My husband was so sweet and supportive that day. He took interest, for my benefit obviously. But he was there when that small little activity exhausted me and we had to head right home. He has been through hell and back with me and not even for one second not put me first in his life. I guess this Valentine's is a little late honey, but I want you to know I don't know how I could possibly love you more each day but I do.

Thanks for joining,

Leah

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

The End Of An Era

I am writing to you today of all days, Valentine's Day, with tears streaming down my face and sobs choking in my throat. See my father and step-mother recently divorced after 25 or so years together. That in and of itself was shocking to me, but as my best friend said, "That is the most surprising unsurprising thing I have ever heard!". No they were not happy, as individuals or as a couple, but the child in me just got used to it, never expecting that once my brother was grown and out of the house everyone would be out of the house. Raising an unruly step-daughter (shock...hand to the mouth...gasp) yours truly and an autistic/bi-polar son took its toll on them. They did not fight back hard enough to keep their marriage, dissolving it the simplest way to deal with 25 years of heartbreak and resentment. It took a while to sell the house but it finally sold. My step-mom moves out Saturday and I find myself so upset today because the house I grew up in I will never go to again. When we moved in I was an insecure and scared child of 11, and when I moved out and away to college at 19 I was a confident and sassy almost-adult that thought she knew everything. Oh the memories we made with those 4 walls and a roof as the rock of Gibraltar backdrop of safe security!

The house is going to another family. Other people will bring their baby home from the hospital, take their child to the first day of school, open their presents Christmas morning, throw the ball for their dog in the backyard. Other people will spend evenings entertaining and chatting in that beautiful kitchen I co-designed with their construction crew, enjoying the Mediterranean inspired tumbled marble and intricately tiled back splash as they make their lifetime of memories in the house I made mine in. This is such an oh-so-sad ending to a very important phase of my life. My formative years. I grew up there! I know which step creeks in which place so as to avoid detection when coming in after curfew. I know which window sticks where and how the setting sun heats up my bedroom. I know which switch works which sprinkler head, having helped my father "tune" their spray countless times, usually against my will! 

I know these tears are being shed for so much more than a house. It is the loss of my childhood home that is hitting me so hard. Which leads to the deeper reason, the loss of my family. I suppose this is the mourning I have never done. This is the most real it has felt. Yes it was strange sleeping with my husband in my parents bed when we would visit, my step-mom insisting and sleeping in my old room, my dad living in a condo the next town over. Yes it is strange having to correct the mental image that pops to mind when I think of them together and living life as husband and wife. This is my 3rd divorce and it gets easier with each one, as I become more of an adult and create my own life. But separation hurts so many more than those directly involved. They created a home, made a family, and have now moved on to other pursuits in life, as have I, and even my little brother has too. So this overly-emotional woman of 32, no wait 34, is that how old I am? Lets just go with 27. So this overly emotional woman of 27 must dry her tears and pretty herself up so my husband can take me out to lunch and we can make our own memories on this sunny and beautiful Valentine's Day.

Thanks for joining,

Leah

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

I Shoplifted! (Re-post from 7/6/10)

I went to my favorite local health food store this past week and my first stop before hitting the dairy case was to grab some incense. I proceeded with the rest of my shopping trip, checked out and went to grab the keys to my car from inside my purse. I opened my bag to begin fishing through the mayhem and sitting right on top of everything was the incense!? I asked my husband if he had put it there, he had not. I racked my brain trying to figure out how it had gotten in there...as it is slowly dawning on me that in my spaced-out medication-dazed-Fibromyalgia-haze I had most likely put it inside my purse instead of in the cart! Still not willing to admit that my auto-pilot had failed me so, I frantically scanned my receipt, hoping I had somehow paid for it though I had no recollection of how it had come to reside in my purse. No dice, not on the receipt. Cold panic grips my heart as I realize I had just shoplifted! So I grabbed my wallet and the incense and headed back into the store and got in line. I paid for my $1.50 box of incense, left the store and went on my way. My husband asked me what they said when I told them I had left the store without paying for it and I looked at him incredulously and proclaimed, "You think I told them?!".

This breakdown of thought to action could get me in serious trouble. At the very least, it is extremely alarming that my brain (void of conscious thought) had directed my body to place something that was not mine into my purse. It kinda makes me question all sorts of things that I take for granted, and not just "Did I lock the front door?" or "Did I turn the coffee pot off?" kinda stuff. What really big lapse am I capable of "unconsciously" committing? How can you even begin to explain something like that? "Sorry officer, I just paid for $96 worth of groceries but felt it necessary to steal a $1.50 box of incense!" It terrifies me to wonder how much of my life I spend tooling around in this daze. I guess all is well that ends well. I did not actually steal anything, but I did manage to scare the bejesus out of myself and start to worry about all sorts of "unconscious" actions that could be happening at any time.

Thanks for joining,

Leah

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

The Human Animal

When I was in college I had tons of girlfriends. It started out with the core group that lived in the dorms our freshmen year. Four or five girls that found each other via housing department assignment and had plenty enough in common to bond lasting and rebel-rousing friendships. Sophomore year came and different groups formed as we transitioned to off-campus living. Friends had been picked up along the way by each of us and our group got larger and larger as we climbed the outer branches of the tree of our college experience. Of course we still honored the unspoken expectation we would go out together every weekend night. And Tuesday night. And Thursday night. Told you I went to a party school! But something inevitable happened. All these "friends" we had made on our own were not so in love with everyone else's "friends" and LOTS of drama ensued. One would not go to a particular party or bar if so-and-so was going to be there. We had to start taking sides and juggle our plans and know who had just slept with who's boyfriend 'cause we sure did not want those two chicks together!

I recalled this memory (and many more) fondly this afternoon as I was musing in my mind about the drama that unfolded yesterday. At the slightest form of conflict I used to turn into an instant, traffic stopping flare and race out to play peace keeper and morph into a sweating, fretting mess over my house being ripped apart. Fearing the heart and soul I had poured into my blog and campaign was shot with 2 people not getting along and a whole bunch of others jumping in on either side, fanning the flames. So as I played "Down college memory lane" today I started laughing. These themes are totally normal to the human animal! We are all so varied and different and thank God we are! Not moving to Stepford USA anytime soon, thank you very much! 

But with different comes fear, judgment and criticism. Equally painful when they are felt from you or to you. Unfortunately this is but one component of this complex thing we call life. My point is  that what happens when drama flares the Fun House is just good old fashioned human nature. People get rubbed the wrong way and disagree and get all angry and pissed off all the time! It is going to happen. We are all not required to love each other equally. But if you want to keep playing in my house please be pleasant to each other at the very least.

Thanks for joining,

Leah

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

Past Present Future

My life is pathetic. I have lost so much of who I am, what I was. I hurt in my heart, I hurt in my head, I hurt in every part of my body. My life has been scaled down to accommodate my illness and it is a very solitary lifestyle. Not many people to talk to, not many experiences anymore. Before I got sick I was the life of the party. I was fun! Oh I am thankful for what I do have, for many are not so fortunate. But compared to what I did have I accept my role in life is being played at 50% of its potential. And I can cover it up with cherries and rainbows and puppy dog smiles, but the reality of the situation is I straight up got half my life taken away from me. I got half the possibilities that should have been afforded to me. The other half just got up and walked away.  One day your sick and as you are trying to figure out exactly how to live this way the next thing you know, you wake up 5 years later and your life just does not resemble your life anymore...

We have been robbed, and this goes for any chronically ill person ever, not just Fibrates. We adapt and comply and accept what is now, knowing we are choosing out of a limited basket to begin with. And we build an existence that supports who we are. And we quietly put the goals and ambitions of who we were into the closet of no more. Life turns into a struggle to survive, each day a chore, seeking out joy and laughter where ever it can be found. But I don't want to feel this way anymore! I want to champion a cause! I want the world to know about Fibromyalgia. I want research and funding and clinical trials and acceptance of core-health, Functional Medicine style. I want to get better. I don't want this "managed", I want to heal! So anyone who is interested in pursuing this cause, come with me.  If you are in the mood to actually be an ACTIVIST for Fibromyalgia, comfortable with the mess of fighting for a cause come with me. For those that are not we really don't have too much in common anymore. For we are going to spread awareness, make a fuss, get all sorts of people and things riled up and NOT STOP UNTIL THEY FIGURE OUT WHAT IS WRONG WITH US, and then hopefully how to fix it. 

Thanks for joining,

Leah

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

Rough and Tough

Today was a rough day. I think I am going to have to accept this is how it may be for a while. It is driving me and many of my family members nuts. I have to keep reminding myself that they mean well and have the best of intentions. I find I am having to ignore the limitations of my pain-wracked body and pretend I am fine, charging full speed ahead. The reaction to every wince, every struggle to sit up, every slow and creaking movement is met with so much worry and concern or oozing stress, knowing they will have to pick up the slack.. They are not used to seeing me like this, in pain but not doped up on narcotics to hide it. Actually saying "Not very good" when asked how I am. I don't want their pity. I don't want them to excuse my behavior. I don't want a big deal made but don't want to be dismissed either. I don't know what I want. All I know is that I live every day of my life with a chronic illness and that really really sucks.

But I have been sick for 6 years already, and I don't have a destination to healthy date pre-planned. I have no idea how this is going to affect me over the course of my life. Yes living with chronic pain sucks, flares suck, strange symptoms and medications and side-effects sucks. But just because we are in pain does not mean this day is not a gift to treasure, one we only get once, cannot return, and are given freely to do with as we please. But there is no rewind, no pause. So we must chose wisely in the moment. I ignored my pain this afternoon and washed both Porkie baton legs and Yorkie 13bs.of solid muscle. Kids are clean. Dinner did not get cooked. Going to bed at 9:00. Life is good...

Blessings,

Leah

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

My Final Post On Prednisone

Yesterday was awful. Terrible. Traumatic and ridiculous. I was having an okay morning. Still in sharp Amethyst pain all over my body from my final break-away from the Prednisone monster. The monster that has been a very big thorn in my side but savior for my brain for 6 months now. But I felt confident it was just a matter of days, a week at the most before it went away, and I would repeat this to myself and it would calm me down. I  did my homework and set about getting ready to go to school. I am putting on my makeup and all of a sudden, low and behold, I glance at the clock and see I am somehow running late to Spanish class again! Now my profesora is strict. She takes no excuses. She is there to teach us Spanish and I feel a fool walking in late and interrupting her. Already did it once in all of 4 class meetings we have had so far. So I race there seamlessly and actually think I am going to walk in maybe 1 minute late and I'll be damned if I can't find a freakin' parking space! I am driving up and down the aisles, up and down up and down up and down. I see a person walking to their car and jam to get to their spot as they pull out only to discover someone is already waiting. Up and down up and down and I am getting frustrated. Drove up and down up and down the overflow lot and nada. I am watching plenty of people find parking spaces but my timing is seriously off. Back to the main lot as I watch the minutes click by and I still can't find a freakin' parking space! So frustrated, now 15 minutes late to class, not knowing if I should even bother, the tension pulsing in my brain and tears streaming down my cheeks. Up and down up and down and I finally grab the steering wheel and shake it with all my might and scream from deep in my gut so much anger and frustration. As loud as I could, as raw as it comes. And I am sobbing as I drive up and down up and down and suddenly it hits me.

I am a stroke survivor and don't have the luxury of behaving this way. I cannot throw tantrums like I (just) did before. I cannot pressure-cook my brain in stress and tension like I have in the past. I cannot indulge in this behavior. So I dried my tears and FINALLY found a parking space, went to the office and turned in my homework and drove myself home to have a Xanax party. Oh I was shaken up, but I don't know if it is more about the frustration or my reaction to it. Hopefully that was my last 'Roid Rage fit and I can put it all behind me and move on. Except I feel this underlying impatience that is ready to snap at every turn. I devote lots of time and take an abundance of medication to keep this snap from happening. Something is not right. Deep in my soul something is not right.

I am having a really hard time putting 1 foot in front of the other right now. And I am having an even harder time forgiving myself for this. I pray this is the end of Prednisone and I never have to say that name again  But I fear there is something different in my brain, so I am mostly the same but just a little off, a bit different than how I was before. Once all the dust settles from all the medication and pain and false energy and exhaustion and manic and depression and the bevy of emotions I have felt consume me over the last half-year, what am I left with ? Who am I left with?

Thanks for joining,

Leah

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

All About The Fun House

There is a spirit, an attitude that exists in most all of us. It is a negative, angry, pissed off attitude and we are given the choice as to what to do with it MANY times a day. We can indulge it and explode on what or whomever is near, we can blanket it and just be a little grouchy, we can squash it and try to bring forth patience, grace and positivity, oh there are so many ways to treat this little devil that sneaks up ever so often. The entire spirit, purpose and goal of The Fibromyalgia Fun House on Facebook is to serve as the support site for members of a Fibromyalgia awareness campaign seeking to unite the patient body into an awareness movement. A patient body that is currently so embittered and angry, they cannot even come together to fight the illness, fight the doubting doctors and an apathetic representation in government. They are so busy pushing their point of view in a demeaning fashion amongst themselves, they will never get together and affect change! In the 6 months I have been doing this I am amazed at the number of people that have turned up rude, nasty, bossy, judgmental, negative or angry, to name but a few undesirables. Some have stayed with us and gotten with the program, recognizing there is still a life to be lived and enjoyed under all that Fibro. Others have left, this clearly not being the place for them.

I learned a lot when I was a retail manager and executive. Managing adults requires an entirely different set of characteristics than say, teaching youth. Adults do not take kindly to being told what to do in a forceful or bossy way. They are especially sensitive to direct criticism and judgment and are not just going to take what they are told as truth, if it seems questionable to them. I made plenty of mistakes and quickly learned success was found in getting people to want to work for you, not work for you because they have to. That was accomplished with a genuine mutual respect and a good natured, light-hearted rapport and working environment. I expect nothing less from the Fun House. 

We come here because we want to. We read posts and comments and try to get to know each other. We post and comment ourselves as a way to share and open up. Yes there is complaining, but we try our darnedest to cheer that person up, give them a laugh or a smile, a bit of strength, some compassion and understanding from our own experiences. Pollyanna does not play at the Fun House. No pretending perfect. But kindness and respect in dealing with each other, positive support and gentle suggestions or tales of experience warmly told, that is what is expected. Yes, everyone has a bad day every so often and has to apologize for their behavior. But the majority of the time The Fibromyalgia Fun House is compassionate, caring, empathetic, silly, funny or a just plain goofy place to hang out

Thanks for joining,

Leah

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

Snoozy Monday

I woke up this morning at 9:30. I was in so much pain. I set the alarm for 10:00, trying to avoid getting out of bed but still pretending I was an adult that would get out of bed. I pushed snooze for 1 hour. When I finally roused myself around 11:30 it was to drag the computer back to bed where I stayed until about 1:30. Took Yorkie & Porkie on a nice long walk and finally had breakfast around 2. I am just pouring my coffee now, as my husband arrives home from work and the gym. Business to take care of around the house, dinner, TV and its time for bed. So today basically turned into a non-day. A day sucked into the abyss of lost days where nothing gets done.

Finding the balance of productivity and rest, forgiveness and expectation, is the core strategy of managing this illness. Not every day can be the one described above, but hectic with frantic energy does not work either. So I am laying down my guilt bag and allowing myself to have a day where I feel like crap and nothing gets done. Tomorrow I can return to the land of expectation and productivity. But as for today I am going to bed right now, at 8:40!

Thanks for joining,

Leah

Remove Yourself From The Illness (Repost)

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

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

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

Thanks for joining,

Leah

Saturday Morning

Every Saturday morning for the last 10 or so years I have gotten up early and gone to work. Retail does not give you much of a break and upper management always thinks Saturday is the busiest day. Then when I went freelance I super had to work on Saturdays, for I could not afford to be picky and turn down any work, no matter the day of the week. I would meet and greet clients and explain, demonstrate and sell prestige skin-care and makeup. It was fun, certain aspects anyway, but physically grueling and weekend-absorbing and, well, retail! Face to face with the citizens of a major metropolitan city and an abundance of international tourists, it was never boring or ever the same. It was a merry-go-round of activity, energy, excitement and just pure pulse. It calmed down a bit when I moved to Arizona but for the most part the job stayed the same. Now I work for me and Saturday is a blog day, but it is also a hang out with the husband, take care of business, tend to the family, shop, play, sleep-in and relax kinda the weekend day. I like this arrangement much better! 

Self-employment is fabulous. The new, fresh, virgin experience of starting a business from the ground up is bountiful with flexibility but slow with results, at least at this stage in the game. It truly is an exercise in self-discipline. Especially when pain creeps in. But we have built something real here, friends. We are going to get the Fibromyalgia word out if it is the last thing we do! We have started and are continuing to do many things to change living with Fibromyalgia. We have our own Purple Pain Code that many of you have shared with your families, making communication easier. We have a support site on Facebook, The Fibromyalgia Fun House, we have a Doctor Appointment Packet for sale with resources to find a new doctor if your current MD is not working with you to manage your symptoms, so you can live your life. We are boycotting those that refuse to do this. We have our own wristbands to wear, raising awareness and uniting us at the same time. We have postcards explaining The Fibromyalgia Crusade you can print out to hand out as a way to inform others you are part of a community bigger than yourself. We will be selling t-shirts shortly, the order HAS been placed, I promise! 

But above and beyond any of that we have found a community to be a part of. A community that just get it and you can lay down your armor and be yourself. You can bitch and complain 'cause sometimes there is simply no one else to listen, and we are here. You can be fun or silly or positive, for that is how you wear your Fibromyalgia and we welcome you! You can do anything in between, life with Fibro is tough as nails. Sometimes people have even become real life friends, or even best friends, the power of finding true understanding is so strong. So we march on, Fibro soldiers. We keep going and grabbing new opportunities as they walk by and know we will one day be victorious.

Thanks for joining,

Leah

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

One Good Day And You Are Ready To Give Your Lilac Away

I am making more and more friends with Fibromyalgia, and I am noticing something. We seem to be blessed with a decidedly short-term memory impairment. Even 1 good day after 5 days in an Amethyst cavern and it's like SHOWTIME! We begin the great race to catch-up on everything we are so horribly behind on. Laundry, cleaning, correspondence, work...does not really matter what it is, the point is we so easily forget the pain from the previous flare and darn it if we don't induce another one with our bevy of activity! I am queen of this melodrama. So sick and tired of having to sit around all the time, I spring up and leap at the chance to accomplish, contribute, not be dependent. But after a short while, as the pain starts to creep back up and I realize I have overdone it, the beginning of a flare rears its ugly dragon head.

So in the midst of this struggle, flare vs. the world, you promise yourself that if you are ever lucky or blessed enough to bask in fields of Lilac again, you will not squander it. You will spend it nurturing yourself so it lasts a really long time, as long as possible. And you will have fun with it. You will not do chores, you will not overburden yourself with "catch-up". You will connect with those you love, feel comfort and pride in who you are, laugh freely and often. But the second that Lilac comes... The cycle continues. Is this the doomed life cycle of a Fibrate? At least the reformed type A sector? Can I end this madness? Can I just feel good and not be in pain? Ever?

One day, my friends, we will. One day we will not have pain every day, every moment of every breathing second of life. We will run and jump and skip across fields of Lilacs and feel no more pain. For if we don't have this hope it is impossible to go on. So I cling to it, believe in it, strive for it, work for it. I know my quality of life will improve, and if I adjust my mindset in the meanwhile, accepting I am still valuable and wonderful as I am, I can endure until that time.

Thanks for joining,

Leah

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

I Am The Size Of Two Of Me

I am a yo-yo. One year I am fat, the next I am much better off 30 lbs. lighter. Then something happens, always health related, and I get fat again. Then I will lose a bunch, often health related, only to gain it back again when something else happens. I use food. I abuse food. I allow it to comfort me when I don't feel good. I let it entertain me when I am bored. I welcome its indulgence when I need a reward. I expect it to cheer me up when I am down. I have a deep and complex and well-established relationship with food. It is not just something to satiate hunger, sustain survival, but a lifestyle centered around eating. And watching TV shows about cooking and eating, and executing a social life around eating and drinking. We have taken a raw necessity of human survival, placed all sorts of cultural or religious or social conditions around it, and turned food into a complex placeholder in the execution of our modern day traditions. 

I am the fattest I have ever been in my life right now thanks to Prednisone and lack of self-control. I put on my fattest fat pants this morning that I have not worn in a few weeks, freshly laundered and dryer dried of course, and had to squeeeeze into them. I am talking button-popping, muffin top exploding jumping up and down to get them up tight. And today is my official first day off Prednisone after 6 months of crack-headed mania from the wonder drug that saved my life. So what am I going to do about it? I finally have my illusion of control back, but it was never a very disciplined illusion to begin with. How do I set about losing this weight? No diet. Diets you go off of and gain the weight back. No Weight Watchers or Nutri-System or program. Tried them all, done them all. For me they work for only a little while. No, this has to be true and long-lasting, life sustaining weight loss. How do I prioritize diet, exercise and weight loss in the schedule of my life? How do I place it over the pain?

Why have I assumed eating poorly lessens my Fibromyalgia symptoms? For that would be the only rational reason to indulge, when in truth it is quite the opposite. Eating crap makes me feel like crap. But for some reason on the way down, it tastes so good as to momentarily satiate my pain, releasing endorphins that feel good for the moment, but are quickly much worse after. I would relish the opportunity to go on the Master Cleanser but think it a wee bit premature. I have to remember I am a stroke survivor and to be gentle with my body. And then that is why all this extra weight concerns me... Back to the central problem at hand. I know what I should do, which is cut out anything processed, fried, cheese or creamy and get my booty to the gym. Make the right choices and take the emotion out of food. Remove a lifetime of habit of associations. Oh this is a tough one, I am working on here. Maybe its something you gotta take day by day, choice by choice. And if you make the right one 95% of the time you look good and are healthy. But if you want chocolate covered macaroon crust coconut cheesecake covered in coconut cream, OHMYGOD! more than 2x a year, you are gonna have problems.

Thanks for joining,

Leah

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

Faith Greater Than Ourselves

I would believe any person who has ever had chronic health problems has adapted, changed, become somehow different because of the experience. It just goes with the territory. Life is lived at a slower, more purposeful pace. Everyone else's needs are not met first, everything does not get done on time and with enthusiasm and, for me at least, perfection is a thing of the past! Life still gets "done", things are taken care of and relationships are still maintained, but it is soooo much more about quality than quantity! I have had near-death health problems since I was 23. Each time I would return to my life and jump right back on the party train, grateful to have survived but not giving it much thought. Oh the ignorance of youth! When I was 28 I suffered my most severe bout of Pancreatitis and left the hospital a changed woman that time. I quit drinking and followed a very strict eating plan. Then about 6 months later "mystery illness" popped up and I started out on this journey. One of confusion, chaos, misunderstanding, disbelief and feeling like complete crap for "no medical reason".

While in the hospital with Pancreatitis in 2007, three years later, I was a sorrowful mess and mourned and sobbed a great deal of the time. How serious this all was, finally hit me. How much I wanted to live, smacked me upside the head. How close to dying and leaving my husband I really was, consumed me. I felt God telling me, clear as a bell (good drugs in the hospital), that if I continued living my life at the frantic and hectic pace I always have, I was not going to make it past 35. I was 30 at the time. I went home a changed woman, I really did. But over the years all my unhealthy habits and coping mechanisms snuck back up on me and I found myself having a very painful stroke that I ignored for 4 days until I had another even more painful one 3 days before my 34th birthday. It took 2 days, countless hi-tech tests and exams and a very good doctor to receive a diagnosis. I don't know if I was in more pain or fear, both rivaled for top-spot concern on my erratic, stroking brain. There were 2 verses from Psalms I said over and over to myself during this time. They met life at its most basic point and became my solace, my ability to stay calm and focused and NOT fear. They stripped away everything that was non-essential and really left it to the basic fundamental: you are alive or you are dead, and not much of this is in your control.

I clung to life and surrendered to God. I was overly unimpressed with what I had done with my life up to that point, given that I kept winding up in the hospital, and decided I was not to be trusted with it anymore. Being alive was a miracle, a gift, and I vowed to use that miracle to further God's purpose on this earth. But once again, 6 months later, life and death not nearly as crucial on my mind, it is so easy for those habits to sneak back up, so easy... So I decided to tattoo those two verses where I could read them every day. Not miss them ever, really, so as to constantly remind myself that none of this is about me, it is about God working through me. And last Saturday I did it. And I am so overwhelmingly happy.

Thanks for joining,
Leah

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

I Have Fibromyalgia Again

I have had Fibromyalgia since mid 2006, acquired during a long bout with a viral infection in my central nervous system. I used Neurontin, Percocet, Cymbalta and Lyrica in the following 4 year after to manage my pain. While on Lyrica I slept a lot and ballooned up like a, well, balloon! I did get off of Percocet, though, and had no pain. Despite that wonderful result I went off Lyrica and back to Neurontin, using Tramadol and Flexeril for pain. Then it just went to Flexeril, and only when I was working. I had, through diet, exercise, state of mind, what have you, got my Fibro to a pretty manageable place. Life was looking up. I had plans to pursue a masters degree and was working as a makeup artist more and more. We even decided to get a puppy life was so grand and on such an upswing (plus Yorkie was bored), so we rescued Porkie. And then I entered what one would call a manic phase, although never having been a diagnosed bi-polar, and had 2 strokes centered around the purging of haunting memories of a youth unaddressed. I was put on Prednisone to manage the treatment of the rare and serious Vasculatitis that had caused the strokes and preceded to turn into a complete manic speed freak. That was real interesting. But I had NO pain on Prednisone and I was flexible and could snap-crackle-pop myself into place and my muscles were not tight and painful. I have weaned down and tomorrow I take my last little dose and I am off it. And I can barely move.

I feel like a 27 year old trapped in the body of a 93 year old. It hurts just to be. I can barely make it through my morning walks and can hardly stretch, any part of my body is tight and in pain. Just the thought of getting up from a chair an excruciating vision of screaming feeling. So much damn feeling! I have completely deconditioned, although how I am not sure, and have no stamina and am so constricted and just in freaking pain! It is interesting, this turn of events. This wonderful place life has deposited me again. When I got through the worst of Pancreatitis I had a plan and was going to march forward in my life. Then I got CFS that led to Fibromyalgia and I had to get that monster under wraps. It took everything I had and then just when, once again, I am on the cusp of re-buliding, I stroke twice. And that bumps me back to the beginning of Fibromyalgia, with a mentality of having just come off some pretty high doses of energy-pumping steroids and a deep and powerful frustration for how many times can one woman start over?

I have faith I will get the mean and ugly Fibro dragon back in her cave, for with all I have been through there is very little that can keep me down. But I am tired of this! I feel like a port city that keeps getting hit with devastating, tragic and wreckage-producing natural disasters. I just want to feel good again, but have to be patient. I will feel good again, it is just gonna take some time and a lot of work...

Thanks for joining,

Leah

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