Monday, October 31, 2011

I Survived The Flare

Last week I found myself in the worst flare of my life. After a month of mounting stress, marital grumblings and the sheer psychosis of living chronically ill I hit bottom. Bottom when you have Fibromyalgia really hurts. So I proceeded to walk around stooped over like a little old lady holding my lower back, wailing and crying and gnashing my teeth over how absolutely awful everything was. Then the anger I try so hard to keep tucked tightly under cover flew up and gave me waves of new aggressors to aggravate my rapidly crumbling illusion of reality.

Oh I was a mess. And Fibromyalgia saw this weakness and POUNCED, took her claim back over my body. Elephants ballet danced with thunderous weight across my upper back, the pain from my lower back radiated all the way down my legs, into my feet for crying out loud! My hips forgot they were made to swivel and when I walked my body weight threatened to crush my internal organs. It was as if somebody pushed the rewind button and took me back to 2006, when I was disabled from Fibromyalgia and Chronic Fatigue Syndrome/ME. No wonder I was such a mess, I thought to myself. This is horrible! I became convinced I was never going to run again and immediately crumpled into a Jello-ing heap at the thought of gaining back the 30 lbs. I just found out I have lost this year. How was I going to write a blog with a positive spin on how to survive Fibromyalgia? How was I going to write the book I am working on to raise awareness? How on earth could I keep the burning embers of The Fibromyalgia Crusade stoked and roasting? How, how, how? For there was just so much pain.

The life I know, and have been working so hard to rebuild, ceased to be reality as the evil fingers of cranial destruction pushed on damaged neurotransmitters and overactive pain receptors. I experienced agony beyond a medicate-able amount, sending me not only through the roof but darn near jumping off it when I got there. Am I going to get my life back, or is this just the way it is now? I seriously wondered. Then I recalled with acute clarity the first time I asked myself that question and how many years and how much work lay between then and now. I am just not up to it, I can't do it again, I reassured myself as I slept and watched mindless reality television, looking for any escape. But something strange happened as I took leave of my stress and took care of myself. I started to feel better. Slowly but surely I started to feel better until one day I woke up and had to remember the flare, for it had passed. But I am renewed in my efforts folks, shouting from the rooftops as loud as my little lungs will carry how absolutely horrible Fibromyalgia is and how living in that unbearable pain is perhaps the worst thing in the world. God bless all of us who suffer this illness.

Thanks for joining,

Friday, October 28, 2011

When Is Life Fair?

Dear Mr. & Ms. Kindergarten Teacher,

I have not been acquainted with you for some time now but have recently discovered I have a bone to pick with you, a really big bone, in fact. 30 years ago when I was in kindergarten you taught me that I had to be fair in my actions because life was fair in it's actions and that was the way it was played. The game of life, that is. So I set out to live my life on that principal. What goes around comes around, karma, do unto others what you would have done unto you, etc. And I gave it a good shot, I really did. But in these 30 years since my impressionable little mind was in your care I have discovered you are a big fat liar! Deceiver! Malinger! Fabricator! For if anything in this world is decidedly NOT fair, it is life. 

Some people are born beautiful, some severely disabled. Some children get cancer, but others get to die at 95 peacefully in their sleep. Some babies are cultivated from test tubes they are wanted so bad and others are ones their mothers wish they never had. Car accidents steal fathers but remarriage can give us sisters and brothers. Wars rip families apart as holidays bring loved ones closer together. And somehow I am supposed to glean from this awful tangle of contradictions that life is fair? See I believe you knew full well, talkin' outa both sides of your mouth, when you lied to me at the age of 5 and told me to play fair because everyone else did too. As an adult responsible for shaping the lives of children you did not do your due diligence and set up generations for imminent disappointment.

If you had just told me that being nice and kind were impertinent, and never given me the illusion of fairness existing in the world, I think I would have fared much better. I would not have expected it. I would not have become as offended when life was unfair to me. And I certainly would not have become so angry when the extent of that unfairness overtook my life. For if the balance was never mine to hold, why did you tell me it was? It seems to have made it that much harder. So please do a huge big favor to future generations and stop telling the little brains in your care that life is fair! Tell them its a journey to an unknown destination, theirs to uncover and discover, an amazing adventure into "what if" and if they are nice and kind people just might be nice and kind back to them. But please, for the love of all things holy, stop telling little kids life is fair. For some of us grow up to find out it is decidedly not.

Thanks for joining,

Thursday, October 27, 2011

From My Better Half

In Sickness and in Health…

When we met 13 years ago I don’t think either of us could have imagined we would test that phrase to it’s fullest extent; but we did…and we have. Through multiple bouts of Pancreatitis, a six-year (and counting) cluster-fuck of Fibromyalgia, and (God, I can’t believe I’m saying this) two strokes at 33, we have embodied every syllable of that phrase. God knows neither of us signed up for this, but here we are.

I remember a funny quote to the effect of, “while you make plans, God laughs”. Neither of us planned for this and I’ll be damned if either of us is laughing.  But here we are.

Normally, these blogs address the Fibrates, the Suffers, the Commiserators… the Unitiated, but I think it’s time I address you…the one I promised “In sickness and in health” to. I don’t even know where to begin and I don’t even remember where this started…but here we are.

When we came together and were married, the world was our oyster. We shot for the moon and didn’t give a damn if we landed in the stars… as long as it was together. Then reality set in. Health set in. Time set in. But somehow, some way we forged past all that insanity and have become stronger.  Stronger…strength…what a funny pair of words. When I was weak, you were strong. And when you were weak, I found the strength to carry us both. I know we still have that moon in sight and I know at my core we’ll get there. How we’ve managed to stay strong is beyond me…but here we are.

Normally I’m a wordsmith, but in writing this blog I feel like a child, barely muttering their first word. There are so many things I want to say to you. I’m proud of you, I love you, you’re my life, my rock, you show me what true strength is (there’s that damn word again). But what bursts out more than anything is…I love you. Wordsmithing aside, I’m proud to walk this earth with you. Side by side. So here we are…

Leah, you’ve leaned on me heavily throughout this insanity called Fibromyalgia (and to a greater extent, life). And truth be told, it has, at times, taken me to the brink of insanity, exhaustion, and pain. But please understand this…I would do again and again and again for all of time. You have shown me what perseverance is…what true strength is…and I am in awe.

Honey, for whatever reason, our path has not been and is not a simple one. I don’t know why…and frankly, I don’t care why. I made a promise to you long ago that we would take this rollercoaster ride together “in sickness and in health”, and I plan to abide by that until time ceases to exist.

It’s impossible for me to express my gratitude, love, and respect for you in a blog. But what I can promise is to show you all of until my last breath on this earth. And one day when we’re both on the other side, I’ll pick up right were I left off here. I love you Leah. I respect you Leah. I am in utter awe of you Leah. And frankly, I’m a better man because of you Leah. Thank you for showing me what true strength is.

A note to my wife’s fellow Fibrates…

Leah started the Fibromyalgia Crusade over a year ago because she was sick and tired of the fact that 6 million people and counting did not have a voice. I have never seen such passion and fervor from someone in my life. I know you all draw on her blog for comfort, knowledge and strength, but I’ll be honest with you. Her inner strength comes in large part from you, her fellow Fibrates. She works tirelessly to ensure Fibromyalgia patients have a voice, but there is no way she could do it without your support. Some of you just joined and some of you have been here since the beginning. Either way, she draws strength from all of you…and as her husband, I thank you. It’s not that we all can’t do this alone, but it’s a hell of a lot easier if we have others to lean on. And that’s what this whole Crusade is about!

I wish you all the best of health and well being.


I have been very sick for the last few days and when I finally came back to life this was sitting on my computer screen. All I could say through my tears was "Wow."

Friday, October 21, 2011

The Resurrection Of The Smart Phone

OR: The Ragings Of A Crazy Insomniac

Here I sit at 2:40 AM in a rather particular situation. I have my big doctor appointment tomorrow with my primary care Doc to discuss what I ranted and raved about in a blog a month or so back. Actually its today, at 11 AM, because it is now a new day. There is a significant amount of research I must bring to the table, a blanket of knowledge I must possess if I am truly going to catch her attention and get her to take a second look at an inflammation marker on my blood test she wants to chalk up to "that is just how I am". In fact I was given an abundant opportunity to prove that knowledge is power today, or yesterday, as it is now 2:50 AM. I went to the dentist on Thursday afternoon then called my mom  to chat on my way home. Her friend answered my mom's cell and told me my mother was in the ER. So of course I headed directly there because her symptoms were concerning. Severe migraine, tingling numbness, stuff like that. 

But I got hopelessly lost. People kept telling me to get off on an exit that does not exist on a freeway coming from that direction and taking that interchange. I drove past where it was supposed to be four times and finally decided it just did not exist for me. But none of this is my fault! I am a California girl. There is the ocean and there is east. There is Mexico and there is north. Very simple and linear. But Phoenix has a completely psychotic system of freeways called "loops". Big giant multi-lane highways that circle the city. Huge problem when you live in a metropolis comprised of grids because the same "loop" going the opposite direction, but called the same name, will intersect the same street at two completely opposite ends of the valley, not to mention the loops themselves intersect each other like four times. But in a fit of "this is frivolous and driving me crazy" I shut my smart phone down last week and went back to my little bitty old one that does not know how to hook up to that addiction we call the internet. Anyway I went 50 miles out of my way without my GPS and wound up using all my gas I had budgeted for the week which was coincidentally the exact same amount of money that darn data package costs for the smart phone. Do I even need to say I was a very unhappy girl? Shortly after I arrive at the ER the doctor came in to inform my mother her CT was clear. He was very rude, abrupt and dismissive. He told her to go home, this was an after effect of a concussion she had some months ago. The only other thing he could do is give her a spinal tap to rule out a stroke which she did not need, according to Dr. ER. I assume that term "spinal tap" usually sends most patients running away screaming but I cried at the mere mention, for I remembered the two I got when I was having my strokes and how scared I was. I observed his brisk and "put out" attitude and let him leave as I looked at my mom and her friend and said "Now you know what it feels like to be a Fibromyalgia patient!" 

But I was formulating my plan, oh yes I was. Extracting exact patterns of a week of migraines and tingling numbness from a person drugged up on Dilaudid was interesting, to say the least. But when that doctor came back I started on him and he switched to a different dance very quickly. I informed him I had two hemorrhagic strokes last year. I clarified all the information I had gathered from my mother. I used all sorts of fancy doctor words and pushed him with my knowledge because goodness gracious I have plenty of it! I asked him eye to bull-headed eye if his professional recommendation was that she get the spinal tap or go home. He was much more astute and interested. Then he left again and when he came back he asked my mother what she had decided about the spinal tap, did not tell her she did not need it and to go home. He had miraculously conferred with a neurologist during his departure as well. I needed to research medications and procedures during the long hours emergency rooms absorb, but again I did not have my smart phone. Mom got discharged and thankfully went home to follow up with a neurologist tomorrow, which is now today seeing as it is now 3:15 AM. So I am wired and doing my own medical research and overwhelmed with my life and cannot get a hold of the darn cell phone company to turn that bloody smart phone back on because it is the middle of the night! But hey, its only an hour and 15 minutes before my husband gets up to go to work. I think I just might be able to make it...

Thanks for joining,

Thursday, October 20, 2011

I Wanted To Die

Oh such a touchy subject, one it has taken me a year and a half and some 400 blogs to get the guts to confront head-on, but here it is. That S word far more horrible than any S word I have mentioned so far. Suicide. It is the leading cause of death among Fibromyalgia patients. I know my personal experience with the beast and I also have witnessed a barrage of fellow patients succumb to the dark and hopeless thoughts that can infect and consume one's mind. It seems nobody is immune. Far too often I see many devastating examples of what happens to a Fibromyalgia patient with miserable medical care, an apathetic family/social support network and a job they simply cannot do anymore. I have seen others with entirely too much on their plate racing through life at top speed with no idea how to slow down, careening toward imminent disaster. And sadly still I have seen too many simply in too much pain that continuing to live does not make any sense. It just hurts so damn much. 

All of these are common triggers for Fibromyalgia patients to head down that fatal fork in the road. Living in constant and pervasive level 8 pain that everyone tells you to take Advil for is bad enough. But simply the fact you have been told to take Advil for level 8 pain just because they don't know the cause of it, now that is simply unforgivable. So we take our wounded selves to the corner and try and lick away the scars, the damage, the pain. But this is a pain that goes far deeper than muscle aches and stiffness and insomnia and all the other maladies that come with Fibro. This is total mental devastation.

I was the careening at top speed toward imminent disaster kind of Fibrate. And I sped, and I hit. It was 2006 and I had just been given the ridiculous diagnosis of Fibromyalgia. I broke because I was one sick girl still expecting, and expected, to accomplish what I had always done, but without the physical capabilities to do so. The entire medical system I had been raised to believe knew all knew nothing. I saw no other option than to get my husband to leave me so I could die without guilt. Nobody knew how to take my pain away, nor did they understand how bad it was. If there was no chance ever of improvement why on earth was I continuing to torture myself and those I loved with my pathetic, pain-filled presence? I was desperate, demolished, broken.

I can't tell anyone how to get out of that place, I can only tell you I was able to and I have seen countless others come back from it as well. Meds and therapy, lots of both, and that tiny little pit of Hope resurfaced in the bottom of my gut. It grew and grew because I watered her and fed her and verbally encouraged her to bloom. I ran circles around her chanting and praying and shaking medicine sticks in the air. Basically I told Hope she had to come back to me because it simply was not possible to live without her! Slowly, very slowly, I tried to figure out how to put my life back together again, but I knew that would not happen until somebody could figure out what the hell was wrong with me! So here we are five years later. I have researched it all and tried most therapies under the sun. And yes, there was actually something real wrong with me. I have improved but am still a shadow of my former self. Or am I? Am I actually discovering my true self, hidden and buried under all the junk life had thrown at me? Did getting sick slow me down enough to set me right? These are things we will never know but I am grateful to even be here today asking these questions. Hope did come back to hang out. Sometimes she comes and sometimes she goes, but her burning ember in the bottom of my soul cannot ever go out again, for I simply am not letting her go!

Thanks for joining,

Tuesday, October 18, 2011


Dear Editor,

I am not exactly sure under which category you would like to post this ad. It does require a broad base of skills and knowledge so you may choose to apply it to as many fields as you see fit. We are looking to fill a multi-national staffing agency and need those from all backgrounds.

An adult capable of performing in-home care with a clean record, both police and driving, able to:
-Commit at least 6 days a week and 12 hours a day
-Cook, clean, do laundry, grocery shop & run errands
-Be extremely positive and compassionate
-Play chauffeur to a bevy of doctor appointments where you will keep notes and ask questions or even challenge the doctor if needed
-Remember everything that ever happens in the event it needs to be retold
-Keep track of complicated combinations of medications and make sure they are taken properly and on time
-Give gentle yet thorough massages daily
-Lead a mild stretching and walking program designed to rehabilitate
-Put up with everyone else that lives in the household and keep them quiet and occupied, running their errands and driving them where they need to go as well
-Laugh at the multiple absurdities of life
-Spend a lot of time at the pharmacy
-Be really really nice in the face of a very grouchy person in pain
-Be up to date on the latest research and treatments for chronic pain
-Calm down hysterical or upset people on a regular basis
-Act as a mediator between clueless friends and family that can be mean at times
-Be honest and ethical, even if the one you care for will never notice
-Fight your ass off for disability so you can actually get paid
-Ignore mood swings
-Encourage health; physical, mental and spiritual
-Force the one you care for to stop "overdoing it" if you notice they are particularly active or trying to "catch-up" because they are having a good day
-Understand your needs come last
-Play therapist
-Have endless ideas on how to turn a frown upside down
-Caretake for anyone else the one you caretake for caretakes for
-Be overwhelmingly flexible and spontaneous yourself but don't expect that in return

Please apply in person to ensure you are a personality fit with the one you will be working with. This job is hard and complicated and requires long hours at low pay, don't say you have not been warned. However what you will be exposed to will not only make you extremely grateful for all you have but will also make you stop and smell the roses, discover what is truly important in life, learn how to laugh through your tears and show you the unbreakable will of the human spirit. Call 888-NO-FIBRO to register and obtain information on where to apply. Thank you for your interest.

Monday, October 17, 2011

Flip Flop

When I was 25 I moved from L.A. to San Francisco. I managed a makeup counter at one of the grand ole' department stores in Union Square. It was equally parts exhausting and amusing, exhilarating and soul-sucking. But it was the job I had so that was the job I did. I made friends with the manager of the cosmetics counter across the aisle from me. During the cold rainy holiday hours we would start work at 4:30 AM. There is nothing as overwhelmingly obnoxious as the sight of a department store at 4:30 in the morning and we were left with plenty of time to talk before the customers slowly trickled in with dawn's winter rays. She was a wild French woman and we quickly became friends because if you are interesting or unique I usually want to be your friend. Wild and French makes for interesting and unique. So everyday, right around the time it actually started getting busy  with the noon lunch-hour rush bustling in, we were off of work. Completely deliriously exhausted neither of us were racing home to go play housewife. No, we needed to repair our suffering.

Instead we would plant ourselves at The Gold Dust Lounge up the trolley track from the store, dragging a rotating cast of other disgruntled and eternally exhausted co-workers along for the ride. $2.50 glasses of champagne, need I say more? Lets just say we drank away plenty of lunches, dinners and foggy evenings tucked into those red crushed-velvet booths. We bitched and moaned and complained about work but more often than not we spent the afternoon laughing. At each other, ourselves and of course the other patrons reflected back in tacky gilded-gold framed mirrors. Her husband would usually come pick us up and interject some sanity into the situation, yet not too much, for he was the wild French lady's husband after all and frequently the party would carry on. My spitfire French friend was a Leo, as am I, and we tend to be on the  passionate and emotional side. Well I will be darned if this man did not have the funniest expression to describe his wife's rapidly cycling mood changes, as anyone who has ever loved a complicated woman is more than likely well acquainted with. "Flip-flop," he would say, taking his hand and placing it flat in the other palm, flipping it over rapidly back and forth. "That is what she is, flip-flop!" We would all laugh because me oh my, it was only so true! 

Lately my husband and I have been delving into the damage chronic sickness and the good old-fashioned game of living life has stamped on us. We are working with every beat of our hearts to start to mend the past, repair the damage and rebuild our life in a way that sustains health. In this process there is a lot of pain and anguish coming to the surface. I frequently find myself reminiscing about life before I got sick, when consequences were minimal and the future an endless canvas with which to paint the life of my dreams. The memories are bittersweet, for I am glad I had that time but so sad it, and the rest of life as I thought it would be, is over. Now I could interject here how much chronic illness has made me who I am today, brought out a better person, taught me what is important in life. And all of that is true, but I am not in a phase of appreciation right now. No right now I am in a phase of destruction and rebirth and am really pissed off all this has happened to us. As I feel these feelings on their way out the door of my life I can find myself having rapidly cycling mood swings. But pretty quickly my memory of that wild French lady's husband with his "Flip-flop" will come to mind. It turns my poor-little-me frown upside down as I giggle and laugh at my memories, beyond grateful I have them. Something so silly that describes the ups and downs of life perfectly, especially if they are flipping and flopping every four minutes or so.

Thanks for joining,

Friday, October 14, 2011

I Shoplifted!

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, 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 it is slowly dawning on me that in my spaced-out medication-dazed Fibro-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 still had no recollection of how it had come to reside in my purse. No dice, not on the receipt. Cold panic gripped my heart as I realized 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. I looked at him incredulously and proclaimed, "You think I told them?" But seriously this breakdown of thought to action is quite alarming and could get me in serious trouble. At the very least it is extremely concerning 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,

This blog was originally published July 6, 2010. I have reduced my medications substantially since I wrote this, mostly due to no longer working and not being in as much pain along with heavy duty lifestyle management. But yesterday I almost poured vodka into my breakfast smoothie instead of blueberries so am not sure my mind is any more mine than it was then!

Thursday, October 13, 2011

But Were You Hurt Enough?

There is a book whose title I will not tell, written by an author that will remain unnamed, that everyone in the whole wide world made such a gigantic fuss about. Hollywood even made it into a movie! And all I heard from everyone I knew was to read this book. It is great! Empowered womanhood! You will love it! They all assured me. So I broke down and bought the darn thing in paperback at Target. Immediately I was turned off, for this woman had been portrayed as a hero, a goddess of unprecedented proportions for overcoming unspeakable pain and triumphing over all her wrongdoers with a transcendent peacefulness.

But all I could see was a woman with an endless bank account and oodles of time on her hands void of any responsibility cavorting around and indulging herself. And I got mad. Actually I was really really jealous. Because I wanted her life. And I wanted her problems. And most of all I wanted her solution, irresponsible and generously funded self-indulgence! I put the book down after my 6th or so attempt to get into it, fuming and angry as I had been the 5 times I had previously ventured into her world. Did anybody even edit this book? It reads like she turned a tape recorder on and recorded her stream of consciousness, whatever came to mind, and published it hot off the transcribers desk. Finally I decided this is not the right time in my life to be reading this book and it went back on the shelf for another place, another journey, a whole other attitude adjustment.

Then irony smacked me upside the head a few times to catch my attention. My complete lack of compassion became blaringly obvious. I judged this woman because her trauma was not worthy of my respect. It was not big enough, grand enough, destructive enough. But it was still her trauma. She had every right to feel what she felt, for if that was as bad as her life had gotten she was a very lucky girl and must not have much to compare it to. She had every right to make millions of dollars off this venture if she is writing what her customers want. Just because this woman had not befallen to a multitude of health problems or natural disasters or an abusive past or anything equally traumatic I judged her. Yet I would not ever in a million years wish what I have been through on even my worst enemy. This found me in a peculiar set of reasoning that made no rational sense. My heart softened and I found empathy and even a little joy in being reminded not everyone suffers so horribly in this thing called life. So go for it girl! Live your life and keep loving and laughing and doing what makes you happy, I begrudge you nothing. I hope she never has to find out about the devastation that comes when life really betrays you and leaves you stripped naked and beaten lying on the floor wanting to die. I can only pray.

Thanks for joining,

Tuesday, October 11, 2011

To The One I Love

Dear Healthy person in my life I love very much,

I wish I could erase today. I wish I could push rewind and go back to the beginning. I would not have  been in such a pissy mood, taking my pain out on you when I woke up in the morning. Instead we could have spent it drinking coffee and pouring over the newspaper, giggling and commenting on the offensiveness of the world. I wish I had not yelled and shouted, sending the dog under the bed and the kids to turn up the TV, rolling their eyes at yet one more frustrated tantrum from predictable ol' me. I wish we had gotten ourselves up and out of the house, enjoying a break in the summer heat or some warmth in the winter gloom. We could have gone anywhere! Done anything! But we did not. Because once I got going I could not stop. Everything made me mad. Everything was catastrophic. The world was coming to an end. Or at least I thought so because I was just in so much pain. 

Sadly we did not meander around our little downtown, grabbing a quick bite to eat in the cool evening air and making up stories about the funny people walking by. Assigning them silly issues, complications, relationships, based on what we perceive of them. No we did not go, we sat in the house and every time you tried to help I just got madder and madder. I could not do anything else, no matter how hard I tried, because I am devastated and don't know what to do about it. My life hurts and in trying to deal with this pain nobody understands I am making your life hurt, too. So we did not cozy up with a bowl of popcorn on the family room sofa to watch our favorite TV show and laugh at the stupid commercials. No, I locked myself in my bedroom and you, I don't know what you did. I cried and felt sorry for myself and got mad all over again because I hurt so bad and nobody can help me. 

I feel powerless to stop it, this spiral down to the pit of hell I seem to be on, and the last thing I want to do is take you on this ride with me. Somehow you put up with me. My insecurities, my neuroses, my anger, my pain. I don't quite know how. I believe if I had a choice to not be subjected to me I would run for the hills but for you, oh for you I would lie down and die so I kinda understand why you are still here after everyone else has gone. Hopefully we made up and shared how hard life is for both of us because I have Fibromyalgia and how it has totally screwed everything up. Hopefully we listened to every little old married for 65 years couple and did not go to bed angry. Or maybe we don't even share a bed. But if we did not make up, snuggling and discussing our plans for tomorrow, if I have not said it already, I am sorry. I am just so damn sorry. I am scared and drowning and don't know what to do, how to stop it. I am sorry for the pain I cause you, I am sorry you have to even go through this. But most of all I thank you, most amazing person that you are. All I can do is try and do better tomorrow but please please please know how much I love you.

A Fibromyalgia Patient

Monday, October 10, 2011

My Secret Garden

Chronicles of the ups and downs and sideways progress of a female living with Fibromyalgia. That is what I promise you in the title block below the name of this blog. And for whatever reason I remembered something I had not thought about in many years as I was looking at, and pondering it, just now. My teenage years were spent in a very pleasant and tree lined suburban community master planned with distinguished schools and Southern California sunshine. My pops took me on a trip up the gasp-worthy coastline of my long native state when I graduated from high school. The Pacific Ocean, the song of my heart, was the soundtrack for this journey. 

We were off to go look at colleges and of course eventually found ourselves in San Francisco, in a neighborhood I now recognize with ease but was a mystery to then 18 year-old me. We were walking up and down the compacted streets complete with a misty rain and the loud cacophony of an urban grind. Garbage trucks, buses, pedestrians, delivery trucks and a tiny little lane in the middle for both directions of traffic to travel so of course lots of honking horns and yelling too. Eventually we found ourselves in a fabulous breakfast joint cozy with regulars and packed with tourists. My father met up with his boyhood friend that lived in the city and he took us to an amazing place. Between the innocuous storefronts and short driveways posted with giant signs warning of the consequences if you were stupid or brave enough to park there, we ducked down a dingy little ally. 

It opened up to the most beautiful cultivated wild garden I had ever seen in my life. The stuff The Secret Garden or Alice In Wonderland is made of. Enchanting and captivating, you were invited to stay as long as you liked and mossy benches parted the plumage, the light drizzle only adding to the ambiance. There was hardly anybody there because this entire Eden was hidden in the most peculiar place right in front of one's face, if they only knew where to look. Reflecting back on this experience as an adult I smile at the parody, for that blooming sanctuary hidden down an unassuming alley is pretty much my life. I am a dirty dingy crowded street full of mayhem with pockets of beauty flowing from the oddest places and in the most peculiar directions. I never promised this was going to be neat, pretty, polished or perfect and it hasn't been, it isn't. But as I chronicled my personal journey with Fibromyalgia for all the world to see I can't help but feel I have indeed given you what I promised. Plenty of ups and downs and sideways progress to laugh at, cry with, get pissed off at me or with me or just feel a bit more understood along the grueling road that is that thing called life with Fibro. I am amazed so many have taken this journey with me and for that I thank you, and I hope my writing has helped you or someone you love in some positive way.

Thanks for joining,

Friday, October 7, 2011

The Death Of The Smart Phone

A murder has been committed. I did it and am glad I did, for my smart phone and I were just not getting along. As a lady that REBELS at being told what to do by anyone for anything, I have been in constant battle with that darn phone for over a year. It zings and beeps and makes all sorts of R2-D2 type sounds, even if I have the vibrate button pushed! And please don't get me started on apps. They are just as controlling and bossy and needed to be updated daily. It got to the point I was not getting my text messages because all the smart phone and apps cared about was themselves.

Yes I know we could have gotten to know each other much better and perhaps a mutual friend could have shown us both how to compromise so our union was not nearly so volatile. But in all honesty the last priority in my life right now is learning how to use a bossy phone. Especially one that never does what I ask it to do, calls whoever it wants whenever it wants and when I set the alarm, if I happen to be staying somewhere other than my home, I will wake up well after the time I set it for to see the screen flashing and blinking like a fireworks display without uttering a peep. Can I just ask here, what is the point?

Yes I am sure many of you think I am some sort of dark-age technological moron and that is fine because I am. I am sure there are many that are much more skilled and wonder what kind of vapid imp I must be to have so many problems with a simple phone. But all of my annoyances aside the real reason I killed it was because I could not afford it. That data package is far too much. Last night that conversation took place, the one between two partners trying to suss through the business of living life together. Not to mention the extra challenge brought to the table when one of them is chronically ill. So we did our 75th round of cuts and the first thing I volunteered was that damn smart phone! Just now I killed it, resurrected its predecessor in its place and am looking at this archaic little phone wondering how it works and what exactly it does, for it all looks way too simple to do much of anything at all.

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Thursday, October 6, 2011

Raging Bull

Well kids I feel like I am giving you "woman on the verge" blogs these days. I am hoping they are better than nothing. I am experiencing the worst shingles outbreak of my life. It has literally taken over my brain and I feel like a cow with "turning disease". That is when a maggot crawls into a cow's ear and infests in its brain, causing the cow to turn around in eternal circles until it drops dead. The fact that they even have a name for this is odd. But it is no joke, I learned about it in 10th grade biology class. In fact it is probably the only thing I remember from 10th grade biology class. But mine is more "crazy lady disease" and does not involve maggots. So I have barricaded myself in my apartment and medicated the incessant sobbing down to a dull sniffle. I am trying with all my might to not let this flare convince me life is hopeless and there is no point.

I have always been brutally honest and raw in this blog, for what is the purpose if I am not? I am sure it is not hard to find bloggers intent on forced happiness or cheerful attitudes, but I have discovered not many Fibro patients are happy or cheerful all of the time. I have not sugarcoated the hell this journey has been or how frustrated I am with the pathetic response Fibromyalgia patients are met with from the world at large. I have been quite vocal that through heaping amounts of hard work and determination I was able to drastically improve my quality of life. And I am the first one to tell you laughter is without a doubt the best and most sane way to survive this illness.

But today I don't have that hope, that laughter, that song in my heart. No matter I still must keep going because as we all know the show must go on. That is life, that is being an adult, right? Well right now I say phooey! I am angry and mad and feeling very sorry for myself. I get so frustrated with healthy people and their petty problems they think are huge. Or watching them screw up their lives completely of their own accord. I would give my eye teeth to have their health! I get so mad at the person I was and life I lived before I got sick, hating it so I don't have to feel the pain of missing it. Oh happy and healthy where are you? I feel like you are a wayward teenager. You don't come around very often and when you do it is dramatic and rushed. So yes for today it is "Bitter, party of one!" over here. Whatever, I can give it a few days. But it will be interesting to see if I find myself better in a few more, and skipping down the path of hope and happiness once again. I always have every other time before.

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Tuesday, October 4, 2011

A Really Big Question

I had some labs drawn a few weeks back and my doctor's nurse called me with the results late last week. My vitamin D is low and I need more thyroid medication, however those were the least of my concerns because my C-Reactive Protein came back high. Normal range is 3-8 and I am 18.7. I knew it was a test for inflammation but didn't know much more than that. The nurse informed me because my CRP was the same as it was in April, the last time they checked, my doctor considered it stable and was not concerned. "What?" I asked, unsure I heard her right. "So what was my sedrate?" I inquired. Ah but that test, another marker of general inflammation, had not been run. "Did she check my ANA?" I questioned, wanting to be sure Lupus or another autoimmune disorder had not cropped up in the years Fibromyalgia had consumed my life. "How about my white blood cell count, has that ever gone back down after the strokes?" I kept on. I think I lost the nurse at this point because she stopped answering me and started talking notes to give to the doctor.

I had my CRP checked years ago at The Fibro & Fatigue Centers and it was elevated, but I could barely walk across the room back then and was in so much pain surely I knew I was inflamed. Today I did a little research, eternally thankful for my friend named google. Oh wow I am not sure if I loved or hated what I saw! The CRP test is used to confirm general inflammation and assess the possible presence of: cancer, connective tissue disease, heart attack, infection, atherosclerosis, inflammatory bowel disease, lupus, RA, strokes, polymalgia rheumatica, vasculitius and giant cell arteritis, to name a few. When I read the definition of polymalgia rheumatica I almost fell out of my chair, for I will be darned if everything but the weight-loss and being over 50 did not describe me to a T. Then the link to giant cell arteritis and vasculitis made my blood run cold, for vasculitis was the cause of my strokes.

Then I got really really really angry. I felt like I was back at square one with doctors not taking me seriously because I am young, proactive and look healthy. I am so pissed at my doctor for thinking this is just something to be ignored. For most polymalgia rheumatica may occur in patients over 50 but strokes don't usually happen to 33 year-olds either, so I think I have earned myself some "out of the box" problem-solving medical care by now. I see my doctor in 3 weeks. I am going to compile all my lab records from 2005-now, including records from the multiple hospitalizations due to various life-threatening ailments, and research as much as I can. And I am going to go in there and let her know how disappointed I am by her lack of investigating something that could be linked to the strokes that almost killed me last year. I will request a referral to a Rheumatologist, too. For if I don't do these things all I can do is sit here feeling like a ticking time bomb with a blindfold over my eyes, just waiting for the next health crisis to explode and take my life.

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Monday, October 3, 2011

On Retreat

When I was extremely sick with CFS/ME I was a basket case. I was disabled to the point I could hardly leave my house. I had NO ability to deal with conflict or stress and would melt into a blithering puddle reminiscent of the Wicked Witch of the West at the slightest provocation. After much dismissal I had finally found a doctor that believed me and ran a litanous list of extensive tests. He ruled out MS, HIV, heart problems, thyroid dysfunction, autoimmune disease, both bacterial and viral infections and a plethora of everything else he could think of. But still he could not tell me what was wrong with me. I was falling apart because I did not have any idea how to deal with the total destruction of my life. Well meaning friends and family were, quite frankly, up my ass. When are you going to get better? Have you tried this vitamin potion? My friend got better on it. Did you know a lot of people claim to be in pain so they can get disability and don't have to work? Have you tried this? Have you tried that? Oh the list went on. Suggestion after suggestion, opinion after opinion shoved down my throat and if I did not pursue each "idea" presented to me I must be one of those fakers, too. 

I finally reached the point where it became blazingly obvious the tiny precious little bits of energy I had each day were not at all spent on getting better but fielding off these people and defending my right to not have explored 25 suggestions overnight. I could barely make it from the bed to flop on the sofa but nobody understood that at all. None of them had ever dealt with chronic pain or illness yet knew the answer, if I would only just try it. So instead of committing myself to an insane asylum, for that is surely where I was headed, I went on retreat for two weeks. Unfortunately I did not have the money to head off to a "wellness center" where I could holistically ponder and contemplate my situation and just rest. Laying by a pool, getting massages, maybe some acupuncture or reiki treatments.

So what, I thought. I can go on retreat right here in my very own living room! It was not my apartment that was bothering me, nor was it my husband or dog. I sent everyone a mass and vague email that I would be "on retreat" for two weeks and unreachable. I turned the ringers on my phone off, the answering machine volume down and silenced that cell phone, neglecting my email as well. And I sat. I thought, I contemplated, I cried, I prayed and problem solved and laughed, all by myself. My husband would come home from work after a long day and I would have enough energy to actually spend some time with him. It was glorious! At the end of the two weeks I was actually a bit stronger and could deal with the difficulty of others with a lot more confidence, for I had found my voice. I have gone "on retreat" a few times since, when things just became too intense to handle. Blocked out the world at large and got into my own head, heart and soul on my never ending quest to figure out how to live sick in a world that has no patience for it. It is the best thing I have done for myself when my feelings of anger, resentment, frustration and aggression start taking over, consuming my thoughts and ultimately my health. 

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