I Stayed Calm During A Crisis!

My husband came home from the gym the other day and set out to heat up some food. He turned the electric stove burner to 7, 10 being the hottest. I am sitting on the sofa in the living room watching TV when I hear him exclaim "Oh no!" and hear pots and pans clanging. I sense a change in light behind me, turn around and discover there is a good old fashioned electric grease fire consuming my stove top, flames licking the cupboard above it! So I charge into the kitchen, immediately grab the fire extinguisher from under the sink, aim it at the fire and squeeze as I shut my eyes. Nothing happens. I shout "A pin! There must be a pin!" and pull the pin from the safety on the extinguisher, shoot the nozzle and put out the fire. It was a triumphant moment! I was on cloud 9 as I discovered I had reacted in a calm, cool and efficient fashion, quickly and with success during a moment of such intensity. Something I imagine myself doing in every "crisis" situation, but truthfully lacking faith I could actually keep my wits about me, knowing how scattered my brain is these days. At this point half my kitchen is covered in whatever fire extinguishers are made of, a fine powder blanketing every surface, creating rolling hills and valleys on my left-over grits (grrrr), a kitchen towel, the canister of dog food, you name it. So being the sweet wife that I am I scold at my husband for not telling me there was a FIRE going on and just exclaiming "Oh no!", turn on my heals and head back to the sofa to watch TV, leaving the dear man to clean up the mess left in his wake.

There are few issues I am left with as the aftermath of my strokes, but controlling my temper and problem-solving in a quick situation are two areas I have lost ground in and they have been blaring at me for a while. Not so long ago I found myself screaming at my husband on the phone while he was at Trader Joe's, because he could not find the specific canister of coffee I was describing. Then an employee comes over to help him and she has no idea what I am talking about either. I proceed to start screaming at her through the phone shooting directly into my husband's ear, a bubbling inferno of rage pouring out of me. He just hung up in exasperation and bought whatever was the closest to what I had described. So here I sit, sipping that French Roast blend that is not my most favorable selection, grateful my husband has a forgiving heart. Then there was the post office incident (scroll down a few blogs for that one), and all these tiny little hiccups in life, the ones we all experience 100 times a day, but they are causing me to come unglued and completely lose it. So as I am discussing this with my husband he looks at me and says, "You need to exercise. You clearly have the energy with all these outrageous bursts you keep having, and exercise will channel and use that energy." And he was right.

The next day I got on program. I woke up and walked the dogs and would count 100 steps of walking then break into 30 steps of jogging. I quickly suffered. My right leg, below the site of the Sacroiliac Joint Dysfunction, pulled and burned all the way to my ankle. Then I came home and lightly rebounded on my trampoline while pulling bands to work my bicep for the round-table portion of Chelsea Lately. Next is a 25 minute program on Fit TV that is a flowing yoga sequence that kicks my booty but I do the best I can. And then I would rest. Actually I could really not do much more for the rest of the day but my mood and happiness immediately shifted, as though someone had turned on a switch. And each day, a minimum of 3 days a week, I have rolled out of bed in pain and cranky and forced myself to do it. I have not had one angry outburst since then. Yes plenty of thing have annoyed me or pissed me off, but I have been able to (gasp) control my temper. And then with the electric grease fire on the stove-top I learned I can act cool and efficient in a crisis. And it appears exercise is a magic remedy for me at this stage in my Fibromyalgia journey. Good thing because I have lost 10 lbs. in the first two weeks and only have 30 more to go before I am at pre-Prednisone weight. Sigh.

Thanks for joining.

Leah

The Gift Of Pain

Blogspot was down yesterday, sorry this is a day late ~

I am part of an elite group. A rare and select few that have been given an incredible gift. The gift of pain. Sometimes it comes earlier in life and sometimes later. Arriving in the form of a blow to the gut or a stab to the heart, each are equally experienced. Either physical or mental, it penetrates, permeates, and snakes vines around the central control of the body, the nervous system. Pretty soon the synapses and neurons and neutrons and neurotransmitters are conforming around the thick ivy of trauma enveloping the base of the brain. The aforementioned occurs naturally in every person, but sometimes a particular person will have a genetic link or specific response or traumatic shock and the ivy of pain and misery takes over, growing up, down and all around. Consuming the control center of the body.

They call this Fibromyalgia. And don’t know why it happens. Or how to fix it. And so we, the patients carrying this diagnosis, are given that gift. Pain. Anguish. Misery. And we have to figure out what to do with it. For ultimately how it affects me is up to me. I have run myself ragged, done backflips to make them happy, stressed and struggled and screamed a thousand times and that has not taken my pain away. I have begged and pleaded and cried and prayed, and still my pain has not gone away. So I got quiet, and looked deep inside. I pulled out tons of junk, baggage, ill will, anger, unforgiveness, frustration and fault. But did my pain go away? I researched and educated myself on blaring truths our modern world is oblivious too. I learned how to sleep and eat and work and play, but only after these things had been taken away from me. I had to learn how to fight and get them back. I learned how to nurture myself, love myself, insist others treat me with dignity and respect. I learned how to love in a whole new way, so much deeper and with a purity that eluded the former me. And still I had pain. So how can I possibly say this is a gift? Pain is a gift?

Because without this pain I would not be the me that is me. I would not be triumphant over misery. I would not be the victor over the simple, so hard fought and won. I would not be the person that sits here writing this, sharing my experience and hoping that you too will find the value deep inside yourself and march the path to wellness and self-acceptance. For every day I learn a little bit more about how to control this pain. What food to eat, what activities to engage in. Who to allow into the inner sanctum of my world. How to engage with the masses, get a solid night sleep, expect what is realistic. So I can say, without a doubt, this pain has saved me from the life that was before. The world of expectation and greed and selfishness and all that is ugly. It forced me to get quiet inside myself, assess what is important and mindfully live each and every day. For if I don’t, the pain will consume me, and take away the gift that is all it has given.

Thanks for joining,

Leah

My Trip To The Shopping Mall

Oh my, yesterday was quite a day. A good day. Fun and unemotional (always a good sign). My mom needed a top to wear to a party this weekend so we met at the mall. Well first we met to eat. And as we are eating she tells me I need to write a side-splitting funny blog. And then she performed the dramatic act that is going to become that side-splitting funny blog while we are leaving the restaurant. I was trying to get online with my phone and followed her into the bathroom, my head down, focused on my hands. She goes into one of the stalls. I am still absorbed in my online pursuit and have not looked up from my phone. I stand and wait for her in front of the sinks and mirrors, tapping away at the keypad. A person walks in, an employee, to wash up. I do a double take out of the corner of my eye as I am greeted with a questioning, Hello. I look up to see a person that looks like a man. I am very confused. Maybe a gay man? But a gay man would not be in the woman's restroom. Is this a transsexual? Possibly mid-transfer between woman and man? So as my slow brain attempts to quickly unscramble this information into recognizable parts I conclude that no, I am looking at a man. I look a little to the left and see a urinal. Finally it all clicks into place that we are in the men's restroom as I loudly exclaim this information to my mother, still in one of the stalls, apologize to the gentleman and start laughing hysterically as I exit the bathroom clearly marked MEN.

Then I made some rounds, having worked in most of the department stores in most of the malls in the greater Phoenix area. Lots has changed, for in retail it always does, but there are usually those few sprinkled throughout that stay steady, don't move on. I ran into one as my mom browsed the sale upstairs and I scoured the cosmetics floor for any recognizable faces. And I was so saddened by her news that her mother, a woman I had met who was vibrant and alive just last year, had died. Suddenly, no reason. My heart went out to her as I watched this shell shocked single mother of 2 hold back her tears on the sales floor. Her mother had been her childcare and it was so obvious the emotional and financial devastation this dear heart was in the middle of. I felt so bad I wanted to offer to take care of her kids for her! Yeah, imagine me as daycare for a 2 and 4 year-old! Luckily I bit my tongue before I offered something I could not do. I went on to talk to another former co-worker and friend only to find out her cancer had come back. I spot a third familiar face and discover she had fallen and broken her hip. At this point I stopped looking for people I knew and fled cosmetics to escape in woman's sportswear and find my mother, very saddened by their tribulations. 

As we are walking to the parking garage I spot a vending machine. I am parched, my throat so dry I can hardly swallow, white foam coating the edge of my lips. I have just enough to buy a $1.75 tiny little bottle of water and feed the overpriced drink dispenser the last of my change. But it is broken. It eats my money and leaves us standing there really thirsty and very frustrated. At this point I fantasize about having a big black marker in my purse so I could write across the window of the machine in big black block letters OUT OF ORDER!!! I head into the nearest store and wait patiently as the clerk finishes helping the customer in front of me, pondering my options and simmering down a little. I then explain the situation and ask if I could borrow a black marker, promising to bring it back. The sweetheart of a girl gets it immediately and asks if I want a piece of paper too. I reluctantly say yes as I let out a puff of air, telling her she probably just saved me from getting arrested for vandalism and winding up in Tent City. She slaps a piece of tape on my OUT OF ORDER sign and I leave the store to triumphantly pin the sign on the thieving mechanism, still horribly thirsty but ultimately glad I did not deface public property. I head home, tired and exhausted, and contemplate the events of the day. We are all just people trying to survive this game called life. Bad stuff happens to good people. Everyone has their struggles, and no one is immune to difficulty and devastation. As I make my way back to the safe and controlled environment of my home, I find myself grateful to have survived another day, and always looking for ways to make a better tomorrow.

Thanks for joining,

Leah

The Stigma Of Fibromyalgia

A thought just suddenly popped in my head, seemingly from nowhere, and I am finally able to put my finger on exactly what the stigma of Fibromyalgia brings to the table. See its not that we don't want to get better or are lazy or are working the disability system or are crazy, drug seeking or just feeling the normal aches and pains of age. That is what the ignorant must believe for some odd reason of their own. But I am talking about the rest of the folks we know and come into contact with. The ones we expect support and belief from. Their reactions can lie from fascinatingly interested (my favorite of course) to apathetic, sympathetic or just plain uncomfortable. And often times we are treated poorly, our proclamation of ill health met with skepticism, and the truth that lies underneath that attitude. The belief that if you would stop indulging this problem of yours and just assume yourself better, you could have your life back. And that is all it is my friends. Dismissed as optional. Once I was able to assess this fundamental truth I felt the scales fall away from my eyes. It was extremely easy for me to picture why we are not taken seriously.

I remember, long before I got sick, hearing about something called Chronic Fatigue Syndrome. Maybe it was towards the end of college, in my early 20's. And I distinctly recall thinking to myself Well then why don't they just get enough sleep? Go take a nap! Many moons later I got a very serious and debilitating group of infections with the same name, but in no way did the name fit the disease I was afflicted with. The debilitating, painful, life-sucking sickness that disabled me. And I understood. But you can't really understand until you have it. Unless you have it. In the mean time we are made to feel frivolous and indulgent about being sick! How about the disappointment and inconvenience factor? We are reminded, often in painful ways, how unacceptable our behavior (illness) is, or how harshly judged we are, and not even behind our backs! I struggled with this for years. Especially with family. Most of my friends had fallen by the wayside once I took ill. But family gathering, oh those were some doozies! As salt of the earth traditionalists, the men watched football and women cooked and cleaned. Frequently it was inquired as to why I was only bringing one dish. Whispers wisped around, tongues clacking that I was not helping enough with food prep or clean-up. And inquiries straight to my, and my husbands face, as to why on earth we don't have children yet and need to hurry up already! We ain't gettin' no younger! Oh that was an ugly one. The lack of empathy was never so strong as it was on that topic.

And all this judgment and criticism and refusal to accept that I was sick with something real only served to make me not want to be around them! It took a lot of strength, forgiveness and self-love to get to the point where a complete lack of interest in my medical condition rolled off my back. And some days I am up to it, strong enough to deal, and others I am not. But I still am cut to the quick when I am challenged over my diagnoses. When it is implied, or blatantly stated, that I am just dramatically nurturing depression or are lazy or worst of all, don't have good manners! Everyone suddenly turns in to a diagnostic technician, doctor, herbalist or pharmacist. Especially the ones that had a friend who had Fibromyalgia and just did_______ and is all better now! So guys and dolls, we have a lot of work to do. A handful of doctors have picked up this diagnoses and seek to find a cause and cure. A bunch of organizations have formed to spread awareness and raise funds for research. And those are SO important to advancing our cause. But the biggest social impact to raise awareness and validity of this illness lies with the 6 million and counting in the USA alone that have Fibromyalgia. We are the voice of this illness! We are the normal people walking around amongst our peers that must stop and inform everyone our lives touch that Fibromyalgia is real, we have it, and we are not going away because it is an inconvenient or disbelieved illness. I get a lot of inquiries as to what that purple band on my left wrist is for, and cherish each opportunity to explain, educate, and ultimate make the reality of living with Fibromyalgia a much more decent place to dwell.

Thanks for joining,

Leah

Its All About The Symptom Chart

The other day I was talking to a good friend about life, love, marriage, you know, fun things like that. I happened upon a funny memory I had not thought of in years. When I was newly married, oh so many years ago, one evening my husband and I were watching TV. Back in those days of ‘yore we were your typical newlyweds and seldom kept our hands off each other. But somehow this particular evening we found ourselves on opposite ends of the sofa, not cuddled together like we usually were. In my typically female brain I started to obsess on this. I sat there, paying no attention to the Seinfeld re-run on in front of me, and flipped through the mental file of what could be wrong. “Why is he not near me? Am I not attractive to him? Does he love me? Why isn’t he showing me the attention or affection he usually does?” I sat there getting more and more worked up as the minutes ticked by, my paranoia and insecurity mounting. Finally on the commercial break I looked over at him and exploded “Why are you not near me? Do you love me? Am I attractive to you? I don’t understand what is wrong!” He looked back at me in complete shock and proclaimed “Honey, I am just watching TV!” Oh I learned a lot that night about the fundamental differences between how men and women communicate and perceive things.

I have somehow managed to survive the nearly last 10 years of marriage by learning how to accept this variation in baseline. Things that are important to my husband may not be important to me (like home electronics) and certain things that are important to me are not important to him (like makeup). We have learned how to respect our differences while placing primary emphasis on growing together as we grew as individuals. Change is inevitable, thank God, or I would still be the super-stressed-out overachieving 23 year old I once was and that just sounds exhausting! But I'll be darned if Fibromyalgia did not do its damnedest to cause division, for it was obviously something one person was going through first hand but it was still happening to both of us. How to communicate that? How to put into words someone else can understand how badly you hurt, crazy you feel, totally freaked out you are? Yes he was there every step of the way, but does not live in my head, therefore cannot understand what I don't spell out. Learning how to communicate on this level was an entirely different playing field. I sure wish back then I had the Purple Pain Code at my disposal!

One of the things that helped me, and subsequently my husband, was to chart my symptoms. With the flippin' Fibro-fog I could not remember anything anyway, so charting was the only way to effectively communicate with my doctors. Oh so many countless appointments found me blithering and blathering my way through, usually forgetting the most important concerns I had, and unable to state with conviction why I was really even there! I sounded lame, even to myself! See for a doctor to support a disability claim, write a work note, prescribe a medication or even begin the long process of obtaining a diagnosis, our medical professionals must be given the clearest and most concise snapshot of how our lives occur. Our limitations, frustrations and failures. Our successes or recognition of a pattern of behavior resulting in a new understanding in how to manage a symptom, pinpoint a trigger or avoid a flare. The symptom chart is a crucial tool in getting anyone else that is not a Fibromyalgia patient to understand even an inkling of what a day in your life is like. The Doctor Appointment Packet sold on The Fibromyalgia Crusade website has one, a pretty comprehensive composite of symptoms with a grading scale and a place to record your sleep, work and exercise activity. It is amazing how much you can learn by looking back at an overview of a week in your life! And how much your doctor can learn about how to better treat you. With a disorder modern medicine is just on the cusp of understanding and many still challenge the validity of, it is critical to become a pro-active patient. Once I learned this there was not a doctor in the land that did not take me seriously. I walked into each appointment armed with oodles of documented information and the details of what I was doing to manage my health. Yes, I frequently overwhelmed them but GOOD! It showed them I was a force to be reckoned with and I was just not going to go away. This was a critical step in getting my Fibromyalgia managed so I could regain a quality of life. Because an angry Fibrate in pain shoving page after page of  documented symptoms, previous treatment attempts and a clearly spelled out expectation of appointment objectives is enough to make any doctor take you seriously. Any doctor interested in truly helping their patients, that is.

Thanks for joining,
Leah

Its Not That Odd To Breakdown

In the 10 months I have been publishing this blog and connecting with fellow Fibromyalgia patients I have noticed a frequent trend. There reaches a point where the reality of living with constant pain and fatigue and insomnia breaks you. Or comes within a hair's breath. It hurts my heart to see the pleas for help, the scribbled ramblings of a racing brain ill equipped to withstand the devastation occurring simultaneously in your life and in your body. Screaming someone make sense of this! Someone please just tell me what to do and I will do it! Please take this stupid and random and weird and complex and misunderstood illness away from me! I myself am not immune to it and have seen it enough times, in many different people from all walks of life, to wonder if anyone is. Its like the culmination of all the crap we juggle crashes down. All the strength it takes to conjure up the perseverance and sheer will to get out of bed each morning suddenly vacates. And left with the unfiltered purity of your misery, you snap. But in some ways, if you are fortunate enough to have a support network to help save you from yourself, it can be a necessary step in the life-cycle of coming to terms with, and moving beyond, a Fibromyalgia diagnosis.

Oddly enough I hit my bottom very shortly after I took the final test to confirm this vague and looming diagnosis of exclusion. The MRI to test for MS. I remember exactly how I felt on that sunny-yet-chilly early summer day in northern California. Standing in the middle of my living room on my cordless phone as I was informed there were no abnormalities in my MRI confirming Multiple Sclerosis. I hung up the phone and sobbed. Now please understand I did not want MS by any stretch of the imagination. I understand what a terrible degenerative disease it is. Yet the sobs were rolling deep out of the center of my being because that was my last chance. BECAUSE MODERN MEDICINE COULD NOT TELL ME WHY I WAS SO SICK! So ill that I could not do my job, a very stripped down version of the one I had before I got sick. In so much pain I could think of nothing but the constant hurt, and fatigue so bad making my bed had turned into an Olympic event. But modern medicine was all I knew. And the best they could offer me was a  CFS and Fibromyalgia diagnosis with no way to get better. I was in prison occupying a body wracked with illness. And there was no key to get out. So my mind folded.

I knew it was coming, but of course had to push myself over the brink before I finally caved and admitted defeat. I had been to see a Psychiatrist a few days before, and luckily she was there to catch me in the ways a Psychiatrist can, with compassion and medication. My husband and mother offered the emotional support and supervision I required and my MD gave me a month off of work and on to state disability to figure this problem out. A month! Ha! 5 years later and I am still figuring it out. But that was the fire under my bum propelling me into educating myself to the real truths of modern medicine. How it is the symptom, not the cause, that is often treated. How when a doctor with a God complex can't fix you in a 15 minuet office visit they turn it around to make you the unstable and hysterical one. And how if I ever wished to resume living life as a somewhat normal individual I had to figure it out. For myself. And that was really really hard. So when I see these breakdowns occur, as they all to often do, I say a little prayer that strength and hope will be sent their way. And I remember back on my own lowest-low and the subsequent aftershocks that have dotted my journey. Oh friends this is hard. But not impossible, to learn how to live with. I figure there are two ways to look at it. Oh well or I can.

Thanks for joining,

Leah

The Right To Be Happy

I watched a HBO movie recently about the first reality show in 1973. It was an interesting and thought provoking tale about a family living in Southern California with 7 kids, Mom and Dad. A PBS special that was the first stone thrown to shatter the Donna Reed image television narrowly portrayed. I enjoyed watching it, for I have major big-family envy, but there was one line that snapped my attention and stopped me cold. The traveling-salesman philandering husband was complaining about how important it was for his expectant children to learn how to pay their own way in life. His late teens/early twenties eldest son was floating from the East Coast to Europe, exploring his passions and dreams, indulging in theater and the arts. The wife took a long drag of her cigarette, turned her head to her husband and said "What about raising people that have a chance to be happy in life?" I think I actually gasped. It was like a knife to my heart. Her single statement a dagger in my psyche. For the fundamental difference in the art of parenting that burst to the surface of that exchange was one I had never heard before. I was raised to grow-up and take care of myself. I got a job at 15 and was taught to work hard and persevere and swallow it and do whatever it takes to be successful, get the job done. So that is what I did. My teenage and college years were no better or worse than any other middle class suburban kid growing up in the USA in the 90's. Absolutely no reason to feel sorry for me, but I worked for a bit of what I had too.

Yet the thought of being given an opportunity to indulge myself in play and self-exploration is something I had only been told to hope for on the other side of my career and child rearing. Something  for which I had paid my dues and bought for myself. The justifiable luxury on the other side of a lifetime of hard work and toil. The thought that a parent would be interested in providing that for me was, well, laughable. That was just not our lifestyle. My grandparents were working class farmers. They lived the great depression and were industrious and thrifty. Those were the values they raised their children with, and in turn my parents (after indulging in the hippie-love movement) passed down to me. Those same values are the ones I applied to my career while repetitively ignoring the clanging symbols my health was banging in front of me.  For in my mind there was no option as to whether or not I worked, and I pushed myself back to it so many times I lost count. I forced myself to continue to do a job I was too sick to do because I had to pay my bills. Just like so many other Fibromyalgia patients have to. Unfortunately we tend to do this to ourselves, don't we? 

Through the years of all my research and experience in surviving multiple health crises I believe now that if I had stopped when my symptoms first started, took them seriously and pursued wellness, I could have avoided the intense severity that brought me to my knees, caused my emotional breakdown and subsequent devastation to my family. But I truly saw no way to do that. My income was necessary to the survival of our life. Between all the medical tests to obtain a diagnosis and my reduced salary it was not long before we were in financial dire straits. Which pushed me to work harder. Which made me sicker. So this too is what we are fighting for, dear friends and readers. Yet another objective of The Fibromyalgia Crusade. The right to be sick. And the right to tend to our illness when we get it, not after we have ran ourselves ragged and can no longer stand up. This is an amazingly expensive disorder to have. It is disabling, has no cure and limited treatment options wrought with unsavory side-effects, and is only firmly diagnosed after dozens of other illnesses have been ruled out. Obtaining disability is a nightmare, let alone finding a doctor to treat you and work to discovering the root cause of your pain. So keep marching forward, my friends. We the patients must join forces and progress awareness and, dare I say it, acceptance of this illness together. For I know now I am not waiting until "retirement" to enjoy my life. I guess when your 34th birthday is spent in the hospital having danced on death's door it makes it pretty darn hard to plan to wait until I am 65 to get to livin'. Besides, the retirement age will be close to 80 by then. Oh my.

Thanks for joining,

Leah

The Mean Lady At The Post Office

I went to the post office on Saturday to mail out some orders. The clerk processes the tee shirts just fine but turns to her co-worker next to her to verify she is marking and charging the awareness bands the correct way. The clerk-next-door examines my package and starts literally yelling at me, informing me the size of the envelope is all wrong and HOLY SMOKES the thickness varies! She completely stops helping the folks at her window and grabs some sort of postal employee training program material to demonstrate the package cannot fit through an opening it can obviously fit through, jamming it so it crunches and almost rips the envelope in her effort to be right. Now let me say I have been going to that post office at least twice a week since November and the loud and obnoxious clerk has helped me dozens of times with hundreds of the exact same package. In fact, one of those times was last week when I sent out 6 and she did not say boo to me. But she keeps going on and on, loudly and rudely, like she has never seen me before, and refuses to answer me when I ask when all this changed. Nor will she admit to a rate increase that took place on April 17th of this year that is widely published and any Joe Schmoe can look up and verify in a quick google search. She keeps shouting that nothing has changed and these were the regulations and she did not make the rules. Remember this is not even the clerk that is helping me, nor is she any kind of supervisor. 

Oh I am bubbling mad! She is talking so forcefully and loudly that asking questions is futile. My husband, booming over her grating-on-my-ears voice, turns to the clerk that is helping us and asks how much it is going to cost. It is the exact same rate I have been paying since April 17th. We pay and leave and once I get in the car the floodgates release! Oh I am so angry! What a bitch! How dare she talk to us like that! She was not even helping her own customers! Who does she think she is! But the thing I am most angry about is I seem to have lost the ability to stand up for myself. I am becoming increasingly aware I have a serious problem with stress. Basically my ability to deal with it is zilch, zip, zero. As a Fibro patient my senses are already, well, sensitive. But this problem has been getting worse and worse to the point that any public exchange that requires a speck of gumption, stand up for yourself or "Hey rude lady, don't talk to me that way!" derails me. So as I am crying and ranting and raving my husband encourages me to talk about what I feel (oh bless his angel heart) and as I blabber through my thought process I come to a startling revelation. I have lost the ability to problem-solve in a heated moment! Once that adrenaline starts pumping I cannot quickly  mentally scan and assess the situation in any given number of case scenarios, and effectively implement the one that will both meet my objective and mitigate the situation. My brain becomes this mushy mess of confusion and surging chemicals leaping across fried synapses.

Armed with this new enlightenment about how my brain is functioning is actually comforting. I am not going crazy after all! This is just the fun aftermath of the two strokes I had last year. So yet again I set out on a regatta to figure out how to manage this gap, this flaw in brain operation. Melting down at every confrontation is so ridiculously counter-productive to my health it is not even an option. I must build a toolkit to have at the ready so when that flood of emotion hits I can gracefully untangle myself and get the hell out of there as fast as possible. And remind myself once again that when people have a problem with me, it is usually a problem they really have with themselves. Clearly Miss Cheerful has one place in her life she gets to feel in control, and I hope, for the sake of the general public, I got the worst of her that day. So I have filed a complaint and am changing post offices. Luckily in this day and age I can stand up for myself without having to shout in someone's face. Because if it happens once, shame on you. Happens twice, shame on me. Plus, it could really be so much worse. I could be her.

Thanks for joining,

Leah

Shift The Focus And Pick Up The Responsibility

A few weeks back I came to a startling revelation. As I attempt to mop up my life from the mayhem 2 strokes and 6 months on high-dose steroids left in its wake, I was getting so mad that I was not completing all my tasks, tending to my responsibilities. It was really getting out of control, so I set up a weekly to-do chart and made a list of everything I need to get to, from cooking and cleaning to painting my toenails and going to the post office. Then I tried to plug that list into my weekly chart. Nothing ironclad or too controlling, more general blocks of time to complete general categories of tasks. But it did not fit. It was almost comical as I tried to copy, paste and manipulate 75 million things into a realistic snapshot of a week in my life. No wonder I was getting so upset, I could not have completed all that before I was sick! I could not make it work and had to step away, but vowed I was not going to throw up my hands and give up on it, as I have every time before. See I have established a wonderful pattern of behavior that just kinda snuck up on me and became who I am. I expect to accomplish everything, then I don't so I get upset, being upset and overexertion causes a flare and then I am able to accomplish even less! I have been doing this my whole life, just take out the word flare and replace it with stressed out. Its really stupid and actually the definition of insanity. So I have taken a few weeks, chewed the fat and mulled it over. Yes, there is a certain amount of productivity that is required to live. We all have it, there is no getting around it, no matter how bad you hurt or miserable you feel. So I have to make mine fit into the time and energy I have to get it done in. That is just the way it is.

What is really required is shifting my focus and pulling back on my already nearly threadbare list of obligations and responsibilities. Admitting I still cannot do it all, minimizing expectations, both from myself and what others expect, and accepting help. This brings up a whole bathtub full of feelings of worthlessness, letting people down, insecurity and the one that is never late, GUILT! So these too are things I must work on, in the inside, as I attempt to restore order to the outside of my life. I can do this with realistic expectations, allowing adequate Fibro patient-time (FPT) to accomplish each task, acknowledging that I am doing my best and letting what I can't complete roll off my back. C'est la vie. That is just the way it is. I will get to it when time and energy permit.  My 5 pointed star of health is screaming at me to make it center stage in my life. It has been barely balancing on one leg and is high time I put my foot down, or at least the 4 other legs of the star, and commit to what is doable. I know as a Fibromyalgia patient I crave consistency. From my illness, its impact on my life, how it affects and alters all I do. So in my attempt to create an environment that is healing, productive and balanced I will try to share that harmony with you, my readers and friends.

I have already decided to devote the career portion of my life to The Fibromyalgia Crusade. Empowering patients and spreading awareness. I am thrilled it is thriving so, but I have not been treating it like a job, giving it that elusive consistency and regularity and order. Nor have I been treating my home as my pride, my puppies as my joy, my husband as my blessing or my body as my temple. I have been a mess. All over the place. Up and down 30 times a day! Sadly my brain is a little bit more fried than it was, my central nervous system increasingly damaged from that whole ordeal last summer. But I am finding my limits and stopping points and learning how far I can go. What is important and gets all my focus. And what to direct my attention away from. So this I can offer you, my readers. I can realistically commit to blogging 4 days a week, Monday, Tuesday, Thursday, Friday. And I can commit to progressing The Fibromyalgia Crusade, expanding our reach, creating more tools, offering more awareness items. And I will commit to re-shifting and placing my priorities back on my 5 pointed star. It is critical because chaos and confusion astound me but order and expectancy soothe me. So I have filled in that schedule that was so impossible to figure out before, letting all else fall around that star. My absolute first priority is my health and my best health is achieved with a combination of sleep, exercise, diet, stress management and balanced brain chemicals and hormones. The critical foundation necessary to manage Fibromyalgia, to regain some sort of quality of life. They say you must love yourself first before you can love others. And loving myself is taking care of myself, so I can be the best me I can be, personally, professionally, socially. I know from my own experience that I am as responsible for my health as my doctor, in fact astoundingly more so. So I am ready. I am sick of disorder and mayhem provoking my sensitive brain. I am going to strive for that balance, find that harmony and practice loving myself enough to put me first.

Thanks for joining,

Leah 

Today Is Fibro Awareness Day Yeah!

Blogspot decided not to work for the all of May 12 so this is yesterday's blog:

Today is our day, folks! Today is the day that has been set aside for all the Fibro patients the world over to feel validated and shout out awareness from the rooftops. In all honesty, even though I have had Fibromyalgia since 2005, this is the first May 12 I have greeted with enthusiasm. I just looked back at this blog and there is no entry for May 12 last year. It just did not seem like that big of a deal to me because I was not part of any community. I was just a woman who was grateful to be back to work and decided to practice a long-standing love of writing by starting a blog. It focused on my Fibromyalgia journey and was an overwhelmingly cathartic experience that helped me immensely in coming to emotional terms with what had happened to me. But it stayed private and unpublished. I got up enough guts to take that Intro to Spanish class I had been dreaming of taking for so long. I observed myself actually learn and retain new information and that courage propelled me to look into a graduate program in English Literature. And then last summer, IT happened. For some odd reason still unknown, the blood vessels in my brain started to expand and contract rapidly and I had 2 strokes. I survived, with my central nervous system a little more fried and a few minor losses in cranial function, and was put on high dose steroids for 6 months. I went nuts!     

I know now part of it was the drugs, but the sheer high one gets out of evading death is incredible! I saw life as if it were the first time. I stopped trying to control everything and decided to hand over the reigns to my God. The overwhelming gratefulness I felt towards surviving those strokes re-sparked the overwhelming gratefulness I felt towards surviving Fibromyalgia. And it became clear to me I had a responsibility to publish that secret blog and see what happened. So I started my Facebook page and "liked" all the Fibro sites that looked even remotely interesting, friending those profiles that stood out from the rest, and posting little blurbs of my blog on many pages every day. I called, beckoning the public to view my words, read my memoirs, glimpse at the heart and soul of who I am. Well for some odd reason I think people liked my blog! They could identify and felt understood and really liked the way I wrote. I was astounded. What ensued was a frenzy of blogging and networking, inadvertently creating a support page on my page that quickly became its own page, The Fibromyalgia Fun House. The hits kept rolling, new people kept on commenting, and pretty soon I recognize the state of affairs for Fibromyalgia patients out there in the world is AWFUL! I thought I had a hard time getting that painful little monster under control. Here I was meeting people that were degraded and dismissed, ignored and treated hysterical. Abandoned and disabled and uninsured. It broke my heart.

So I decided we needed to do something about it! The quickest way I could see to affect change was to get the patients to stand up for themselves. To do that they needed strength and resources and support, all sorely lacking from my vantage point. The Fibromyalgia Crusade was born, a patient united awareness campaign, and I set out to steamroll Fibromyalgia into the reality of as many doctors and daughters and husbands and best friends as you all would allow. I was en fuego!  Unstoppable! And now this, my friends, is where we are. I am a full time blogger and founder and president of a pretty snazzy awareness campaign. One I believe in with all my heart. And the support I get out there is incredible. As it has been my awareness campaign, it has become your awareness campaign. Your chance to grab onto something you really need; support, unity, love. Your chance to change your life in the way only you can do. And with a lot of hard work and determination and fight, so many have taken their lives back. So that is why this May 12 means so much to me. Because of the entire world each and every one of you have let me see, your world.  Because of the support we have exchanged and shared. Because each time I hear from all of you it keeps me going. Fighting this fight. Spreading the word. God bless you all, I love you.

Thanks for joining,
Leah

FPT

It takes me a long time to get stuff done. I am talking about normal stuff that used to take the blink of an eye to complete. Returning an email, checking my messages (a GRAND pet-peeve of mine, I don't know why), getting myself fixed-up to get out the door. Every moment of my life I have to weigh my actions against my well-being and in a fluster of rushed analysis decide if I can complete what is in front of me during the time allotted to complete it in. Frequently that itself is a complex equation and releases a flood of pressure on my already confused and delicate central nervous system. This immediately results in a frenzy of stress and in about 2 seconds I am horribly overwhelmed and racing to the Xanax bottle...which should be the meditation CD but I just don't have the time!

So a while back I recognized this new and disturbing pattern and started making room in my life for the fact that I am slower, I don't move as fast as others do, or nearly as fast as I used to. My sense of time is distorted and I will make a list 20 activities long, only to be able to complete 2 in a day. As I adjusted to this, and REALLY made an effort to stop being late to every doctor appointment, I got used to running at a little bit of a slower pace. I accepted that this is part of who I am now, and instead of stressing out and beating myself up I attempted to commit to less and allow more time. I got so comfortable with my newly-adapted time-frames that finally, one day, when my husband yelled "How much longer?" for the 20th time at me as I was getting ready, I finally got up, poked him in the nose and told him I would be ready when I was GOOD and ready and to stop hollarin' at me every 3 minutes, for good riddance! I run on Fibro Patient Time, and am not getting stressed out about it anymore! He looked at me in surprise and we both burst out laughing. "Fibro Patient Time, that is a good one!" he proclaimed.

Since that day I operate on what I call FPT. Yes it is my responsibility to allow enough time and not hold others up, but following that warning, I don't want to be rushed anymore! I don't want the stress that comes from committing to too much, both in and out of my house. I want the reality of what it takes for a Fibrate to get things done to be respected! Like I have learned crossing off 2 things on that To-Do list trailing to the sky is an accomplishment and something to be proud of, I want the exorbitant amount of time it takes me to get things done to be recognized as a sign of my illness, not my laziness. I need others to not take it personally when I call them back 2 weeks later or send that thank you note from Christmas in June. It is not that I love and respect you any less, it is just that it takes me flippin' forever to get things done! Just as the Purple Pain Code has given us a way to express the severity of our symptoms, FPT gives us an allowance to run at a slower pace than the rest racing around the globe at lightening speed. And just like we have recognized pain-killers are usually just pain-dullers, it reminds us, and those we love, know or just have to interact with that yet another area of our life is deeply affected by Fibromylagia.

Thanks for joining,

Leah

Fibromyalgia In The Real World

I had an extremely eye-opening and revealing thing happen to me this weekend. Whilst I was dealing with some minor family upset, I Fibro-crashed. All my energy had been spent and exhaustion socked me square in the jaw. I became stiff and inflamed all over my body. I hurt and no position made me comfortable, sitting, standing, lying down, it all just ached. I became foggy and hazy in my brain and the slightest bit of stress caused catastrophe to my central nervous system, meaning I was a bit of a blithering mess! It was a meltdown of all functioning parts. So as I am Frankenstein-lurching around someone very close to me started pouring their angst out, about the situation I could do nothing about, and instead of being able to listen and give comfort or care I lost it. OVERLOAD ALERT! I sat there looking at this very important and supportive person in my life like they were from Mars. I could not understand why I was their chosen therapist for the moment when I was so clearly not coping well myself. I mean I had all but a red siren flashing on top of my head screaming FLARE! Couldn't they see this? Didn't they know?

But the answer was no. In the midst of their emotional reaction to what was going on they leaned on someone you would typically be able to lean on. And although I have complained of fog and fatigue and exhaustion for years, it turns out I had never properly explained the stress factor. See we don't process stress the way an undamaged brain would. Very low threshold, very extreme reactions and the aftermath is a deflated ball of a person kicked into a weed-filled corner of the school yard. They could not figure out why I was freaking out and I could not understand why they were utilizing me as a pillar of strength when I was clearly a puddle on the ground.

Luckily we had a chance to remove ourselves from the situation, I indulged my flare and pretty much spent the weekend at the pool, and they came to grips with their emotional entanglement. We were then able to talk, and assess where our communication breakdown occurred. Through this exchange I learned something very important about myself, Fibromyalgia, and how to manage it in a demanding and stressful world. Never take anything for granted. For in your mind you may have explained all the in's and out's of living with Fibromyalgia until you are blue in the face, dotted all your i's and crossed all your t's. And sadly most of us have lost friends or family that refuse to accept, believe or understand our illness. But the ones that are still there, the ones that offer support and show unconditional love and stand by your side, those are the ones I am talking about. Those are the ones we cannot just assume exist in our brains and understand our experience. Those are the ones we must constantly remind what we can and cannot do. For in explaining all this I realized I learn more daily about how Fibromyalgia impacts my life through my efforts to manage it, so how could I possibly expect another person to be aware of something about me that I myself have just learned? In light of this new revelation I am redesigning the information cards for The Fibromyalgia Crusade. On the back I am going to list, in common spoken terms, how living with Fibro impacts our lives. So please feel free to comment, email me or throw your 2 cents in at The Fun House. We are going to progress awareness of this illness if it is the last thing we do. It is simply too important not to.

Thanks for joining,

Leah

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

So Easy To Get Derailed

Oh today was not a good day, not a good day at all. I am sitting here fuming and steaming and sputtering all sorts of frustration and anger and confusion and irritation. It all started when I get a before-noon call from a long-time friend in town for business sitting at the darn guard gate to my apartment wanting to know if I can buzz him in. Of course his reasoning is that I don't work so don't have anything to do. Arrrrg! That one makes me so mad. I frantically throw the dirty laundry sitting on the living room floor into the basket and wheel it back into the bedroom, hurriedly scrub the toilet in the guest bath and empty the trash, unlock the front door, turn on the TV so he has something to do and fling myself into the shower. Scrub scrub, shave shave, rinse rinse. Throw on my clothes, iron my hair, dab on a little blush and gloss and I return to the living room to greet my guest. He is sitting on my love seat working on his computer while Porkie eyes him suspiciously from across the room. I package up my orders and print out the new Fibromyalgia Crusade information postcard I have just finished. The plan of action is to photocopy the information card at Kinko's, stuff the orders and head to the post office. Mind you I have confirmed lunch plans with my friend.

So we head out to the copy shop where I am given the most atrocious service by a man that has either failed to learn his job or has never been trained. I leave fuming, swearing I will never go back, with 20 pages of clean white card stock and no information cards for my orders! We head to the post office and I start sealing up my packages, feeling horribly unprofessional. I direct him to turn in a little bit, a few lights down once we merge to one lane, and give him the street name to turn right on. As I am filling out a customs form I look up and have no idea where we are! He had turned at the next light, reciting that I told him to turn right. Well right about now I am seeing red, all the streets twist and turn and merge together and change directions so after a couple of attempts, with my lunch date repetitively texting me that she is starving, I direct him towards home. We were halfway there anyway. So no information cards and nothing sent. I suppose the steam billowing from my ears prompts him to put on Reggae music and tell me to chill out. However, it was HORRIBLE Reggae music and only served to piss me off even more!

Oh but it does not end there my friends. I come home from a very pleasant lunch with my girlfriend to loads of family drama and spend an hour on the phone running interference between a bunch of angry people. At this point my head is splitting and I am not doing well. Then I sit down at the computer to tend to my business, a source of drama entirely on its own. Apparently I am not a person with feelings, but am expected to mechanically and magically solve and satiate the large breadth of problems a certain style of Fibromyalgia patient has. For so many are amazingly wonderful but a handful have mistaken me as a punching bag. I mean I know Prednisone made my face look like a volleyball, but it is not a volleyball and YOU ARE NOT ALLOWED TO PUNCH ME! Was this the girl who wrote not to give your power away, when was it, yesterday? It can't be. I was just 3 days into burying myself in the neuropathways of less stress and more acceptance. Recognizing that if something does not get done today there is always tomorrow. The world will not cease to rotate on its axis if I don't get ______ done right now. And ultimately what has happened is done, and all we have is the moment right now. So I am gonna get back on the train of positive, go curl up with the puppies and watch some General Hospital. They have SO much more drama than I could ever dream of. And yes Miss Scarlett, tomorrow is another day.

Thanks for joining,

Leah

Who Holds Your Power?

Each of us, as human beings, were created with a flexible mind that is willing to grow and change as circumstances dictate. Our willingness to adapt has been the key to our survival, as a species and a society. But like most other earthly relationships, power struggles quickly emerge, hierarchy is created, and the need to control slips firmly in place. With umpteen thousands of years of this under the collective belt of the human race we now look around to find an unfair world in horrible disarray. One lacking humanity and compassion, often void of any depth of purpose or meaning. As Fibromyalgia patients we can find ourselves on the losing side of this equation all too easily. Many still don't believe our pain is real, doctors included. We are forced to beg and plead and cry and religiously document symptom after symptom, as we travel around seeking a doctor to give us some of that much needed compassion accompanied with a dash of relief from their prescription pad. Family and friends can grow resentful and impatient, irritated and overburdened with the sheer gravity of responsibility they must pick up now that extremely competent you is not functioning. Or able do nearly as much as you used to, are no longer as much fun or simply can't keep up.

And the less we are believed the more our power is stolen. A snatch there from Mr. New Rheumatologist that is dismissive and brisk during a 15 minuet new patient appointment. A snip here from an exhausted husband snapping at your slightest gesture of need at the end of a long day of work. A bit given easily to a friend lecturing you that her friend has Fibro and does ________ and is just fine and you should too! Slowly it is chipped and cracked and eroded until a mild rainstorm turns into the torrential flood that sweeps whatever bits and pieces of power that are left out to sea, knocking you flat on your ass. For any Fibromyalgia patient knows how horribly stress and apathy affect our well being.

But do we realize how much power we really hold over our own lives? How it takes a lot of hard work and determination, but you can get it back? For power is not a state of physical being, it is a state of mind. Through the fog and haze Fibromyalgia blankets you with, it is possible to stop giving it away to the power snatchers and hold onto your precious cargo with all your might. Slowly but surely, little by little, Fibromyalgia patients are standing up and telling the world to bugger off. Get lost, go play in traffic, take a long walk off a short pier! Refusing treatment from doctors refusing to treat your Fibro, dropping the peripheral relationships that cause stress and bring you down, not support you and lift you up. Not allowing anyone else to define how you experience your life and your pain. And that is precisely what we need to do. Each emotional encounter, breakdown, tragedy or just plain good old fashioned trial and tribulation comes with it a call. A charge to look at who exactly holds your power in any given situation, and if it is not you, take it back.

 

Thanks for joining,

Leah

The Path Most Traveled

I had an interesting thing happen with Porkie yesterday. Porkie is my year-and-a-half old Yorkie/Poodle rescue that has become the laughter in my heart. She is the silliest dog and actually resembles the offspring of a bucking bronco and a gazelle, shrunk down to 9 lbs! I took the dogs out yesterday before my husband and I went to the pool for an afternoon bake, soak and BBQ. I let them off their leashes at the foot of the stairs, they ran up and both Yorkie and Porkie immediately plopped down on my neighbors front door mat. I call to my husband to come see them, for it was a strange behavior they had never done before. As he is coming out of the house my neighbor opens her door. Yorkie jumps up and runs in our house but my little Porkie dear is frozen in fear. She is 2" from the top of the stairs and her eyes are darting around wildly, not trusting any of the humans closing in around her, inching towards a clean getaway straight down the stairs and into the parking lot. See when we rescued her she had a very checkered past. She was picked up at 5 months old off the streets and taken to the pound. She spent a month there and was 2 days away from her lethal injection when an angel of a volunteer rescued Porkie and brought the puppy to the rescue she runs out of her ranch. For my dear Porkie had HORRIBLE fear of humans and would run away at the slightest approach. My husband thought I had gone batty but indulged me and nearly a year later she is the silliest, most playful, sweetest, incredibly cunning and utterly adorable puppy that demands constant tummy scratches, chomps on Yorkie's ear when she gets excited and licks my husband and I all over the face when we come home. So it was a bit surprising to see a year's worth of socializing, training, love and pack-bonding fly right out the door as her fear instinct took over, her most basic default setting. For she did not trust and that was her instinct to preserve her life.

It reminded me of how hard it is to truly, deep in your heart and soul, change. Lots of people strive for it, want it and lets be honest here, need it in their lives. But very few can ever tap into the root source of their behavior patterns, be it drinking or working, yelling or controlling, recognize what is hidden deep down and embark on the relentless quest to change it. I am one of those that have decided to live life on my terms, not the terms presented in my childhood or mistakes I have made along the way. Not the well-worn patterns that have latched onto me via my heritage and ancestry. And most certainly not the outlook prescribed to me when I came down with a weird set of illnesses modern medicine is still ill equipped to diagnose or treat. But change is so hard! I am trying to untangle the intertwined mess between the type-A perfectionist most comfortable with self-medicating all unpleasant feelings away, the sick girl that can't do much but sit on the sofa all day zoning out on the TV in a medicated stupor, and the woman I am trying so hard to become: dutiful housewife, perfect puppy parent, Fibromyalgia crusader, inspiring writer and somewhat attractive, but more importantly healthy Pancreatitis, CFS, Fibromyalgia and Stroke survivor. Man 'o man if I am not having the darnedest time trying to figure this whole thing out!

For my life is moving, but not necessarily in the direction I want. I am spending my days ping-ponging from web page to web page, allowing the hours of my life to suck into the vacancy of social networking and blogging, neglecting all else. I have lost touch with real people, sitting in the apartment all day, seldom using the freedom to explore I am so generously afforded. I used this past weekend as an opportunity to completely physically, but more important mentally disengage from all computer-related activities and float back down to earth. My life is in a-shambles! I am no longer a bevy of perfectionistic energy, racing from one activity to the next, trying to get it all done. I'm not the sick patient watching the dust multiply and laundry pile up while I just sit there, observing it happen yet physically incapable of doing anything about it. I am a woman who exists somewhat between these two worlds, with the neuropathways that facilitate balance lightly etched into the memory of my brain. The type-A pathway is well traveled and deeply luged. The sickie is chiseled next to it, not as deep but still quite familiar. And the path of success, the one of balance, is lightly laid on the surface. It is traveled so seldom but still exists because at times, it is followed. Yes I am going through a significant stage of growth as I attempt to swerve my desired default to an entirely untraveled daily behavior pattern. But I believe we are all capable of change. For once I knelt down and raised my voice, sweetly urging Porkie in the house, I'll be darned if she didn't immediately run right in our open front door. She just needed a little reassurance, but my girl knows where home is.

Thanks for joining,

Leah