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