Thursday, June 30, 2011

Tame The Beast

In order to get a handle on Fibromyalgia you have to believe you can get a handle on Fibromyalgia. I think that is the trend I am noticing, the pattern evolving. The patients that have questioned drugs-to-treat-symptoms and given up their processed, fake and junk food in exchange for proper nutrition really benefit. The ones that have shut the door on toxic and stressful people and have started exercising, no matter how easy and slow, are improving. The first 4 years I had this illness I was a complete mess. I paid my quivering dues in a shivering heap of self-pity for many months. Not knowing how on earth I was going to survive living life in a body in so much pain. I spent the requisite anger phase lying there with barely a pulse as the world passed me by. It was the worst case of flu in my life. I hurt so bad all I wanted to do was not be inside my own body. No position was comfortable and I did not get the luxury of being sick for a week and getting better and going back to work. No, I had to go to work without getting better, for it was lasting too long. I slowly but surely surrendered my career into lesser and lesser prevalence in my reality as the pain and insomnia overtook me. I became disabled. And then, every semblance of control in my life stripped away, I let go and let God.

Somehow I found fight. Deep, deep inside. It was not me. A pit in the center of my stomach said no. Not this way. It was generations and generations of blood pulsing through me that screamed out a refusal to live in a prison body. All that spirit my ancestors possessed. All they worked for, all they fought to conquer and settle and build and grow found the same determination in me now. A strength I did not know I possessed and had been handed down to me without my knowledge. One step following the other I sought out wellness. I researched and educated myself. I obtained medical treatment. I explored alternative therapies quite successfully. I got CFS into remission and my Fibromyalgia managed. I now know and believe that if anyone has done it, I can too. Anything. Well almost.

But I can live a life! I can sleep and exercise and laugh and love. I can go shopping and take my dogs to the park. And it is this that I wish to impart to you. I wanted to jump off an orange bridge with all my might. But I didn't, and fought back, and won. My life is limited but still a whole hell of a lot better than popping 5 Percocet a day to dull the never-ending pain. Or fatiguing so bad after 30 minutes outside of my house that I had to forget what I was doing and return to the daze of safety. Oh yes, life is much better now than it was before. I am still missing about 35% of myself, that Fibro has stolen. And I try a little bit each day to do better. Both in action and intention. In accepting and forgiving while improving and progressing. And I am thrilled watching so many of you do it too.

Thanks for joining,

Tuesday, June 28, 2011

This Is What I Want

I had 4 majors in college. Hospitality Management, Business, Journalism and the one I actually got the degree in, Interior Design. As you can see I was a bit indecisive. And at my mere 34 years of age I have had 3 careers. Yes, I did work in interior design for the first few years out of college but was sorely unprepared to launch a full-scale construction effort to build a name for myself in a field that I enjoyed as a hobby, but did not like making a living at. In all honesty I will admit, I gave up. Took a job in cosmetics and built my career there, a glutton for retail punishment, clearly. That career carried me, though, through numerous pancreas attacks, CFS and Fibromyalgia until I finally had to lay down my makeup brush and call it quits after the strokes last year. And nobody was more surprised than I to find my 3rd career is a Fibro blogger and awareness campaign founder. It really did sneak up on me and took me by surprise, my frenzy and passion fueling the fire burning in the pit of my stomach. Urging me forward faster than my feet could carry me. I have had Fibromyalgia for 6 years now, and it has destroyed my life and made it a living hell. When I started blogging and communing with other Fibrates I found so many out there fighting the same fight, in many different ways. So many thinking they are alone, and quite frankly crazy, because Fibromyalgia will make you believe that about yourself, if friends and family and doctors don't beat it to the punch. So many abandoned by their spouses and children and friends and family and judged so harshly, oh so harshly! 

And I got so mad, fueled by a Prednisone furnace bubbling and spewing the steam and smoke of rage and anger. This just was not right! I had a hell of a time getting CFS into remission and the pain, fog and insomnia of Fibro under control (most of the time). But the advantages I had in my battle were not a given to every other patient and I was able to see with blaring objectivity what a true and horrific nightmare having Fibromyalgia is in the USA today. And then I met some friends across the pond, and in many other countries, and found it was even worse there! Awareness is pathetic and patients are blamed for their illness. There is very little groundbreaking research or real scientific knowledge about Fibromyalgia as it spreads silently, soaking up and completely absorbing thousands of millions of lives. For not only do I have Fibromyalgia, but my husband and mother and father and step-mother and brother and best friend have been affected by it deeply, too. Both in watching me struggle, lending a supportive hand and coming to terms with the sacrifices I have had to make in my life and how that alters their plans, expectations. So usher in The Fibromyalgia Crusade, my attempt to unite a splintered, angry, abused and often quarreling patient body into one strong voice. WE HAVE FIBROMYALGIA, IT IS REAL, AND WE DESERVE TO BE TREATED WITH DIGNITY AND RESPECT WHILE GETTING OUR SYMPTOMS MANAGED! And pretty much everything I have done since then has been to further this cause. 

My dream is to see each patient taking responsibility for their health, quality of life and medical treatment. Refusing ignorant doctors and apathetic family members a place in their life. And spreading awareness in any and every way they feel comfortable with. This is what I want...what we deserve. I want to see a good faith effort headed our way. I want to see heartfelt awareness being spread, decent government funding budgeted for Fibromyalgia research and all of our family and friends sporting some sort of Fibro awareness something to catch a strangers eye and hopefully spark up an informing conversation. I want to stop seeing Fibromyalgia patients blamed for their illness or on the verge of going homeless. I really want to stop seeing so much uncontrolled pain and fighting to get it managed with doctors just ignoring that annoying depressed patient they believe us to be. And I really really want to never see again a very sick patient, long unable to work, denied the disability they have been paying into their whole lives. I need to know what is wrong with me, damn it! I want to finally be able to answer, Why me? I want the members of the medical community that have condemned or unfairly judged or failed to treat us to hide their eyes in shame as they recognize they were not-so-nice with their bull-headed ignorance. See above all, more than anything else in the world, I want to be done with this illness, I want to be free.

Thanks for joining,

Monday, June 27, 2011

Female Obesity

My grandmother subscribes me to Prevention magazine. Its a shrunk-down (meaning 1/2 as big as a regular magazine) monthly focusing on health and wellness, usually featuring a celebrity who has lost weight or defeated illness and become healthy. There is lots of information on the latest medical research and breaking down foods to show what is really in them and face wrinkle-cream reviews and basically if it has anything to do with a woman, in or out, it covers it. Right up my alley. So I am thumbing through the latest issue when a headline stops me cold. DOES YOUR DOCTOR MAKE YOU FEEL FAT?* grazes across my eyeballs and I stop scanning and start reading. And I will be darned if I didn't learn something that I have suspected for years, but never been able to confirm. The scales are not tipped in our favor, ladies. In fact, they are decidedly against us. Check this out:
  1. More than half of physicians admit they think less of their overweight patients. Ouch.
  2. A 2007 Yale University study found physicians feel a bias toward a woman that weighs 13 lbs. or more over her Body Mass Index (BMI) regulated weight. That could be her boobs, you know.
  3. In a 2003 University of Pennsylvania study more than half the primary-care doctors view their obese patients as awkward, unattractive, ugly and noncompliant. More than 1/3rd of those regard obese (there is that word again) patients as weak-willed, sloppy and lazy. That goes straight to a quadruple ouch.
  4. The BMI scale: (18.5-24.9 normal) (25-29.5 overweight) (30+ obese). The scale is the same for both men and women. But the bias does not kick in for men until 35, approximately 75 lbs. overweight, states the director of Research and Weight Initiatives at the Rudd Center. Women are supposed to have a higher fat ratio than men, as our bodies were created to sustain pregnancy and breast-feeding and fat reserves are available to guarantee survival of the fetus. But clearly not according to the U.S. government.
And the one that stopped me ice cold in my tracks. A doctor that actually got it. "One of the key factors underlying this stereotyping is the notion that nobody would be obese if they were eating healthy and exercising. But for every obese person I see who doesn't exercise 2 hours a day or who's drinking gallons of soda pop, I'll treat 10 thin people doing exactly the same thing." Thank you, Dr. Sharma! Now none of this had to do with Fibromyalgia, yet these are things many of us have had to deal with. Incident after incident referenced in this article kept coming back home that doctors may blame obesity for any and every other health problem. Sprained ankles, asthma, even a simple annual pelvic exam a doctor was unable to complete because of the patient's "obesity". Yes, it is important to maintain a healthy weight. Most of us know the health benefits and concerns if we don't. But what is this ideal of "healthy weight" we are held up to? Well, if you are a woman 5'6" in height and weigh 1 pound over 150 lbs., you are obese. 

I remember my first "obese" experience. I was 23 and had just survived my first pancreas attack. Of course it was not diagnosed properly and they took my appendix. I came home and as I read through my medical records of the hospitalization and surgery I discovered I was described as "a pleasant obese white woman in her early-twenties". What? Obese? That word loomed dangerously in front of me, taunting me. Flush raced up my neck and flooded my face as the shame and embarrassment shock-waved through my body. I may have been plump but don't think I was even over a size 12! And it made me feel so incredibly bad about myself. It crushed me, actually. And I recall my last "obese" experience. After a year of stable weight my doctor upped Lyrica to 450mg to get me off narcotics. I gained 10 lbs. every 2 months and got bigger than I ever had in my life (I did get off those narcotics, though). I begged to be taken off Lyrica and put back on Neurontin, for I was terrified of another pancreas attack triggered by the weight gain. And you know what he did? He told me I was NEVER going to get off Lyrica. EVER. Then he referred me to a bariatric surgeon! Well that will tell you the difference between me at 23 and 33, because I told him to shove it, fired him and have found a new doctor that respects me and treats my variety of ailments with dignity. And although concerned, has never "blamed" me for that 40 lbs. I gained on Prednisone I am working so hard to get rid of.

Thanks for joining,

*Prevention July 2011 pp. 26-33. Rodale Inc. Emmaus, PA 18098

Friday, June 24, 2011

I Am Officially The Crazy Customer

I worked in retail my entire life until I had the strokes last year. That is a solid 17 years. High-school, college, career. All in retail. Working with the general public is something I had become well accustomed to. From that vantage point I was poised to observe a motley crew of odd behaviors, with a few true gems thrown in for extra viewing pleasure. Please don't get me wrong here, I loved many aspects of management and makeup artistry and enjoyed thousands of wonderful encounters with truly delightful people through the years. But 6 years in downtown San Francisco beckoned some of the most amazing displays of humanity I ever thought possible. And some of those were my employees! Oh how nasty and vicious women will become over a free gift with purchase! Being pushed in the stomach forcefully by a little old lady right after she told me I should lose weight. A man walking up with a receipt totaling hundreds of dollars, yelling that it should have been a credit, not a charge. Oh you name it, I have seen it. Homeless drenching themselves in a perfume tester or smearing lipstick all over their face. Tourists from every country imaginable, relentlessly negotiating prices in a corporate department store. Folks returning face cream only to discover the jar is empty or full of a different product when we go to damage it out. There is not enough room for all the stories I could tell. People are crazy! Amusing, but crazy! So I found myself in utter shock and horror yesterday when I realized I was that crazy customer.

Shortened logistics: Bought some things at T.J. Maxx. Was charged 2x for an item. My husband notices it on our way out the door and they give us a credit for the overcharged amount. A few days later we decide not to keep this item so I went back to T.J. Maxx to return it. The salesgirl tells me it has already been returned. What? Oh yeah, I remember, we were charged twice. The credit slip is stapled to the original receipt she is holding in her hand. But the clerk tells me they are different sku #'s, the items were the same price, but had different tag numbers. Therefore, what was that item we were actually charged for and where was it? She calls the manager. I am so confused, and it is only increasing by the second. The manager looks up the un-returned item number. It is not the item I am trying to return. So what does your girl over here do? The confusion and pressure is mounting, and I am well aware I look like a scammer, trying to get one over on the system like I had seen done so many times before. So OF COURSE I start to melt down. By brain morphs into a puddle of misfiring neurons and synapses. I get so flustered I am babbling incoherently and I feel that inability-to-problem-solve-in-a-heated-situation problem I have been having lately take over. I have to explain to the manager what is wrong with me, for my reaction was overly intense, and I am losing it over something one would  simply not normally lose it over. I tell her I had strokes last year and don't deal well in stressful situations. My face is trembling and red and I am trying with all my might to hold back tears. I ask her to pull the security footage so they can see I am not running some sort of swindle operation. I am utterly confused and call my husband, trying to get his recollection of the original purchase and why this was happening. I think she starts to feel bad for me at this point because she starts being nice. She jots down the receipt information and tells me she will call me the next day when she has had time to pull the security reel and sort all of this out. She reassures me they will take care of me and I should not be upset. 

I feel like a total moron, not only for all the confusion, but my poor reaction to it as well. I leave in a daze, clutching the item in my hand and not completely sure about what just happened. As I make my way out to the car it slowly starts to dawn on me...was the item in my hand actually paid for? We had bought 2 items with the same price and I am beginning to realize maybe we never should have received that credit, for we were never overcharged in the first place. Did I technically go into that store to return something I did not own, they did? I climb into my car in the 113 degree heat and sob and cry, as I try with all my might to make sense of this. As I am driving away I mentally accept and practically confirm the store owns this item and debate turning around to take it right back to them. For heaven sakes that is the only right thing to do, especially after making such a major fuss! But I am spent, worn out, and want to check tags when I get home to verify this dawning realization is indeed true. It is. Oh my. So I called the manager and told her I will bring the item back this weekend while shamefully hanging my head. And the stress of all this has pushed me into that flare I was teetering on the edge of. And best of all, if I had not gone in to return it, I would have had a free bag I never even knew I did not pay for!

Thanks for joining,

Thursday, June 23, 2011

You Want Me To Set A What?

It has been told to many a Fibro patient to set a routine. The body responds best to routine. Go to bed at the same time every night, wake up at the same time every morning. A fundamental of "sleep hygiene". Set specific times in your day to exercise, rest, work, be active and be still. And many a Fibro patient have laughed long and hard at that one! Plenty with Fibromyalgia are complete and total victim to the illness. There is very little rhyme or reason or predictability about Fibromyalgia, excepting that it just plain wrecks your life. So gaining control of it, understanding the responses and precursors your body signals, takes a huge amount of hard work and the proper health care. But when you are exhausted and in pain and barely able to function, losing ground in the workplace and/or homelife in big ways, a huge amount of hard work is exactly what you don't have in you. And if I don't know what I am going to feel like from day to day, to the point that I cannot work or attend school or accomplish my responsibilities with much regularity, how in the world am I supposed to set a routine?

I can tell you I personally am mid-way between free-fall and routine. And it has taken me about 3 months to reach this middle. Three months of waking up every morning and promising myself I am dedicated to sticking to this routine. And then physically sticking to it. About a month ago it finally stuck. I work my own hours at my home-based business, The Fibromyalgia Crusade. And I am housewife-in-residence. My husband earns the bacon and I cook it, clean it, wash it, dry it, pay it, balance it, vacuum it and put it away. I groom my own dogs and die my own hair and paint my own toenails. Every luxury has been delicately and hopefully "put away" for a while, I can only hope and pray.  This leaves me with plenty to do but as you can see my schedule is extremely flexible. I don't have to clock-in at a certain time to do a job I am barely able to do. I don't have children to be fed and ready for school at a specific hour. So when I flare, and feel awful and in a horrible mood and am exhausted and can't sleep, I can push through it or indulge it without a world of consequence in other people's lives raining down around my head. And it has taken me 3 month to kinda get here.

But it does help. It helps with the anxiety of knowing what is going to get done when. And it takes a tremendous amount of self-discipline, at least for me. Being in tune with your health and body is extremely important, too. And very hard to achieve. For me walking with intermittent fast bursts and yoga 4 days a week help balance my unbalanced and totally screwed up musculoskeletal system. And I can usually sleep. But committing to a schedule and then pushing through to achieve that commitment can often lead to horrible flares that can last a long time. Once again I think we have to come back to balance, yin yang. If you are so sick your illness controls your life, I personally would do anything and everything I could to flip that control. And then set out to expect a routine. I have spent many Monday's swearing to myself this week was going to be different. And by Tuesday night I am in a flare so bad there is no different anywhere around. Ask questions and seek answers my friends. So many of us have pushed ourselves until we have collapsed. Emotionally, physically, psychologically. You are really sick and need to have your symptoms managed. I guess then, and only then, would expecting a routine make any logical sense. At least to me.

Thanks for joining,

Tuesday, June 21, 2011

I Revolve Around Chapstick

Last week I ran out of chapstick. I am very particular and will only use DCT (Daily Conditioning Treatment) in the peach pot made by Blistex. I smear a thick layer on at night and it keeps my lips lipstick soft all day. And well moisturized. Seeing as I have used this product religiously since my teen years I am without a doubt absolutely and completely addicted to it. Dependent on it. Unable to function without it. Like ask me what the one thing I could not live without on a deserted island is. Its that darn DCT. If they discontinued it I would camp out on the lawn of company headquarters and handcuff myself to the door so they could not get in until they promised to reinstate it. But when I ran out I did not race to the nearest CVS (across the street, literally) to replenish my supply. I could not be bothered to shower, dress and actually leave my hermit cave. So I smeared like things I had around the house on my lips. Vaseline, some department store lip conditioner, lip gloss, vitamin E oil. And my lips proceeded to become so chapped and cracked and dry, pieces were flaking off. I could barely speak. It hurt to move my mouth. 

See I have no natural moisture barrier protection on my lips. I have had so many cold sores, sores that would turn into 5 or 6 at a time, causing the bottom half of my face to morph into, and I am being kind here, Daffy Duck proportions. Valtrex was a Godsend to me. It has saved me from wearing a paper-bag over my head ever since my college years. So seeing as I am lacking the natural moisture protection and my addictive menthol chapstick, I find myself in quite a quandary. But I did not do anything about it until I wake up Saturday morning with a deep crack in the corner of my mouth, rendering it impossible to even yawn. This massive injury on my lips, for that is what it now looked like, made me incredibly grouchy and mad. I took the puppies out for their morning potty break, hollared at my husband to walk out onto the front porch and sent the dogs up the stairs to home. I jumped in the car, drove across the street, and in my full just-woke-up glory (minus the night-guard and ear plugs) marched in to that CVS store and bought myself some bloody DCT. Three pots, to be exact.

And this experience has made me contemplative. How Fibromyalgia has been such a loss of freedom. I cannot just pick up and trek across Europe, healthy and young. I can't take off on a spontaneous or impromptu road trip. I would need my medications first! The mountain of supplements that go with them, too. Sleeping in a bed that is not my own is unrestful and unsatisfactory. Travel just plain sucks. My sleep gets screwed up, my body hurts, I do too much with not enough rest. Grrrrr! Who is this grouchy and confining woman? Where did she come from and how do I get rid of her? I want my choices back! I want to be able to work as hard as I play and possess freedom and possibility. I really need to be so much more than this illness, this pain. But my "dependencies" loom large, chapstick being but the least of them. So how do I marry this sick body with that soaring spirit? How do I coax  illness out of primary focus in my life? I guess maybe the first step is believing it can be done, and then setting out on the painful and twisty road to accomplish it?

Thanks for joining,

Monday, June 20, 2011

The Price Of Womanhood

A few weeks back I set out on a quest to let my overwhelming and often all-consuming guilt go, or at least figure out the root so I could start the process of releasing it. See I was convinced I had ruined my husband's life, imprisoned him in a misery far greater than mine could ever be. I was not given the intimate role model of lifetime marriage by my parents and in the back of my head, back far further than I could ever consciously access, believed when it got tough, people split. Take off. Run, skip, hop or jump their way as far away from the offending party as quickly and blamelessly as possible. Our society is no stranger to divorce. Lifetime marriages are rare, and long-term happy marriages even rarer. I was, in all honesty, shocked my husband still wanted to be my husband! A woman approaching her mid-30's or 10th year of marriage may go through this self-doubt phase anyway, but given my myriad of health problems, balloon of weight, loss of income, inability to keep up with others socially and every other weakness, I could not for the life of me figure out why what I had to offer was enough. But I was missing an important link. What love does to a person, the intense bond nurtured, long-term love becomes. And the character of my husband. See he was modeled lifetime marriage by his parents. And his mother was a home-health nurse, so sickness and illness were not the plague to him that they are to others. But this miserable mess of a woman that I had become; sick, childless, no career and very few friends, practically a recluse, was quickly becoming so insecure I did not even want to be around myself! Obviously this was becoming a big problem and I had to do something about it.

I picked up a book my mother gave me in 2007. Its a scriptural take on the creation of woman and our purpose, our design to compliment man and what an important role we play in the ordered madness of our world. I tried to read this book when she gave it to me 4 years ago. It was really lame! The first few pages I suffered through were full of the strangest conclusions drawn from the most inconsistent evidence and perfectly preposterous analogies. I put it down and forgot about it. But I recently cleaned out my office closet and that unread book traded places with the read books in the stack beside my bed. I picked it up and hauled out to the pool one Saturday afternoon. The first chapter explored the inclination of the female heart to possess beauty, crave to be delighted in, strive to obtain external beauty as a way to reflect what is inside. And each word hit so close to home I felt every thump and thud. It made such perfect and obvious sense! That will tell you what 4 years of living life will do to you! The author talked about little girls playing dress-up, and how before the injustices of the world had a chance to take hold of heart and soul, we would strut around in shoes so big they tripped us and lips so red they overtook our faces. Glimmering belts strapped around our heads like crowns of jewels. Whatever fancy dress was befitting the occasion. We would bounce and flounce our stuff, in front of mirrors and past our parents and take pride in the joy of being female, being pretty, as we dreamed of a future full of glamor and intrigue. Of course my mind went straight back to the little girl I was so many years ago, playing with mommies jewelry box and hats and scarves and elbow-length gloves. And I will be darned if lying amidst the hungover post-teens giggling about their exploits the night before I did not break into almost a full sob!

Something I was reading was ripping back all the layers of "protection" I have swaddled my heart in, and that pure innocence of the little girl I once was soulfully mourned her seclusion, challenged her quarantine. I gradually begun to cease thinking in terms of a $ value on my head, a list of "good" and "bad" qualities that price my self-worth, and begun to think of myself as a magnificent creature, fierce and protective while soft and embracing.  I begun to understand why my heart was aching so bad it was infecting my brain with self-doubt and worthlessness. Because to survive I had to shut her truth, her vulnerability! A cold hard world with many pains and injustices, I vowed early on my heart would never be truly broken because I would protect it by never truly opening it. Never truly surrendering. Not allowing love to not only flow in me but through me, as I was created to do. I am starting to see the beauty in the feminine, the female. I am opening my heart up to my husband in ways I have not in over 12 years of relationship. I am trusting him in ways that for practical purposes are just plain stupid! But the time has come. Fibromyalgia has stripped everything from me, and I have had to rebuild my life brick by painstaking brick. If I can rebuild a healthier, stronger, happier me, a woman that rejoices in her womanhood and sees her value in ways that are just not considered in this day and age, I will have certainly turned that lemon into one fabulous margarita!

Thanks for joining,

Friday, June 17, 2011

How To Get Better From Fibromyalgia

I have been getting a lot of questions lately regarding how I got better from CFS and have managed my Fibromyalgia. People are curious, they want to know. There is so little real information out there. There are lots of things people will sell you, claiming it will soothe your aches and pains. Sometimes it works, sometimes it doesn't. There are lots of people that say they were "cured". Maybe they were, maybe they weren't. But the only universal truth I can accept is Fibromyalgia seems to have a few different sources and is remedied in each person according to the source of their Fibromyalgia. Last August I started a blog people seemed to relate to. That led to a support page for folks that want to talk to each other about Fibro. Then came the awareness campaign, a group to belong to and gain strength from. I built a website, a one-stop shop that seeks to legitimize Fibromyalgia to the common person. Every statistic and description linked back to reputable sources with the click of a button. And sadly even after doing all that I cannot tell you how to get better from CFS and manage your Fibro. I can only tell you how I did. 

I have laid it out in a very long blog to the right of this page under "Must Read Blogs". How I Survived Fibromyalgia, One Woman's Story. All the gory details surrounding my quick descent to disabled and slow ascent to a whole lot better but still not 100%. I am gathering up to write a book, really digging deep and retelling the story of this war I have been fighting since 2005. But I can only speak to what happened to me, not anyone else. For they still have not found a common cause, therefore determining a common cure is extremely difficult. So we mutter around miserable and in pain. Misunderstood and blamed, defamed and estranged.

What does Fibromyalgia need for it to cease to overthrow our lives? What can we do to make this happen? We can work toward managing our symptoms with medication and lifestyle. We can huddle into puddled heaps. We can cry and moan and rage at the unfairness of it all. We can rise up and be strong when we can, and lie down and be weak when we can't. We can simply do our best. Life with Fibro is hard. I have no easy answers. Be strong and love yourself, knowing there are thousands out there just like you. They understand, because they feel just like you do.

Thanks for joining,

Thursday, June 16, 2011

If I Do Not Laugh...I Will Cry

My mother was telling me a story many years ago. Someone she knew had a mother that was an artist. This woman had taken her easel into the forest and was painting what I am sure would have been a beautiful landscape when a tree branch above her fell off of the tree and right on top of her, killing her. As my mother is telling me this story I can kinda tell where it is going and start to giggle. By the time she gets to the tree branch falling I am in near hysterics and at the conclusion of this story I am laughing so hard tears are springing from my eyes and I think I am gonna pee my pants! The sheer absurdity of the situation struck a cord in me, and for some reason I could not contain this laughter. Of course my mother is laughing wildly as well at this point for as we all know, laughter is contagious. Bless that dear woman's soul but I will be darned if we don't giggle like school girls every time this story comes up. Its terrible, its horrible, its something I feel very very guilty about. But despite the guilt and sheer inappropriateness of my reaction, it reaction. 

Then there was this time I was in a big ol' fight with my husband. It was a few years back but I do recall it having something to do with money, for I was sick and cash was flying out the door faster than a heavy-metal-video hot chick's hair in front of a turbo-fan. And we disagreed and were stressed out and not banding together in this time of crisis for our family, but doing what happens all too often and blaming each other, ripping one another apart. As the pressure and tension mount, my husband, being the scotch man that he is, gets up to pour himself a drink. He likes it neat, no ice, in a snifter. It's a small snifter, and he usually fills it about 2 fingers full. But when he walked out of the kitchen I took one look at the glass that was literally filled to the brim with scotch, something I had never seen him do before, and burst out laughing. I could barely force coherent words from my mouth as to why I was laughing so hard. For what was in front of me was so much more than just a glass of scotch 7-fingers-full. It screamed out his distress, despair, fear, anger and frustration that he had not been able to communicate to me in any sort of effective way. It spoke to the volume of his suffering. His most practiced way of dealing with super-stress was to have a drink. But this one glass held about 4 servings and once again the outrageousness of this action sent me into hysterics. He starts laughing too, the absurdity of the situation slowly dawning on him as I rolled around on the ground holding my side and choking out belly aches of laughter. We both dissolve into puddles as all the anger and blame pulse out of us with each shudder and shake, and when we finally calm down we are not mad anymore. We are open, free, back to reading the same page in the same book. It is us against the world. We were able to go on from there united once again, playing for the same team, and facing our problems together. See the laughter had broken the misery...

And that is why if I do not laugh, I will cry. If I cannot look at a terrible and awful state of being such as Fibromyalgia with a glint of respect for how preposterous this situation is, it will take me down. In searching for survival of this illness I have had to learn to make fun of this illness. I have had to laugh at what it has done to me, even if I was crying at the same time. I have made jokes about the stereotypes we are often prey to. The meeting up of a bunch of Fibrates, say at  a convention. Oh the amount of pillows and cots we would need!  It would be like a 24-hour drop-in, "open house",  no set times, just come when you can! No Fibromyalgia Awareness marathon for us. It would be a 1 mile walk, buddy up with another person and take turns pushing each other in the wheelchair! The padded wheelchair, that is. Oh through this adventure in Fibroland I have laughed as much as I have cried. Well maybe not, but... I have only made it this far because I refuse to accept any reality other than my own. And if something horrible or sad or disastrous happens, I can survive it if I can find the absurd. Lift my glass and toast to irony, sarcasm and, simply put, laughter.

Thanks for joining,

Tuesday, June 14, 2011

What On Earth Does A Fibrate Do With A Manic-Depressive?

Last night I was watching that movie Red with my husband. It was pretty funny and we were about 10 minutes from the end when I noticed he kept screwing with his cell phone. I asked him what he was doing and he informed me that my little brother had just called him for the 4th time in 5 minutes. Curiously, I got up and fished my phone from my purse, only to discover 3 missed calls from him as well. Now normally this many calls from someone would warrant an immediate and urgent call back to see what on earth was wrong! But this many from my dear little brother usually indicated 1 thing...a cycle of mania was headed his way. See on top of being autistic, he is also bi-polar. And while he is very diligent about taking his medication, as many manic-depressives are not, the crossed neurological wires of autism make treating his mental illness extremely difficult. Of course my phone starts ringing again, and I answered it to see if he is okay. Oh there was no emergency, just an angry 22 year-old man ranting and raving about his litany of irritations and injustices. He hates his job, says they make fun of him. He is very frustrated at his lack of memory, side-effects of the many medications he takes and would love a girlfriend more than anything in the world. He goes on and on, and I only interrupt to get him off video-game superhero tangents and back to the real world. I also explained that I too suffer from memory problems and understand how frustrating it is. Then I told him I needed to get off the phone, for it was late and we were going to bed.

And that is when the snagle happened. He loudly and ferociously launches into a flowing tirade of all his anger issues and will not shut-up! I calmly repeat myself a good 4 or 5 times. Then he informs me his pinky is numb. I tell him he needs to call mom and continue to attempt to end the conversation, but to no avail. Then the threats start coming, how he is going to hurt himself to punish me and all sorts of ridiculous crap flowing from the activated manipulative and passive-aggressive part of him. My husband is telling me to hang up the damn phone already, he sees where this is going, but I feel bad for my brother and keep trying to end the conversation with at least a disgruntled "bye" from him, not cut him off in the middle of his diatribe. And then it happens. The pressure mounts, the anger boils, the bull-pinned-in-a-little-tiny-cage feeling takes over...and I snap. I launch into a full-blown rage attack. I spring up, screaming a trail of obscenities and throw the phone down, yelling and slamming things and so unbelievably angry that this problem I thought was under control is swallowing me up again! See ever since I had 2 strokes last July I have a serious problem with anger, confrontation, anything really that puts me on the defensive and requires quick problem-solving skills. I have been exercising regularly as a way to expend this energy and up my endorphins, but last night nothing seemed to temper this flare of ferocious anger.

So here I sit, day 1 of what I hope is a very short flare. My head hurts, throat is sore, face throbbing. Fibro pain is extra intense and sleep but an illusive wish. I am a scattered mental mess! And I had been doing so good lately. Actually practicing self-discipline and tackling my household chores in a way I had not in years. Spending that time each day to fix myself up , knowing that when I look better I feel better. Getting off of the facebook vortex and working on progressing The Fibromyalgia Crusade. And of course, the hardest of all, exercising regularly. Last night's outburst makes this flare all the more devastating as I stress out about backsliding and losing my hard-fought progress. So what do I do, to make sure this does not happen again? This is my brother, not someone I will cut out of my life, ever. And he is going to continue to wax and wane with the symptoms of his illness as I do with mine. It is very important for me to remain a positive influence in his life. A sister with a different perspective and life experiences than mom or dad. And yes, as much as I hope this day never comes, I will one day be his conservator once they no longer are able. So I have to figure out how to have a relationship with him, during whatever stage his bi-polar cycle he happens to be in. And I have to find a way to do this without activating my own illness and trashing my progress. When I figure all of this out I will be sure to let you know, but for now I think I am going to send him an email, tell him I love him and just need a little break for a while.

Thanks for joining,

Monday, June 13, 2011

Chemical Clean-Up

The Fibromyalgia flare is an interesting entity to come to terms and learn how to cope with. There are some oh-so-good I kinda remember what it was like to be normal days that pop up every so often. When that happens I usually cannot remember the living hell Fibromyalgia really is and honestly wonder what I am making such a fuss about. I think its the brain's default coping mechanism, to squash the memory of pain and anguish in its full acute detail and highlight the not-so-bad moments with skewed accuracy. Its how women are able to have those 2nd babies...or 2nd husbands...I can only assume. But for some unknown reason, which may be rooted in many different causes, those symptom-flares eventually come. You know, you hurt extra bad, cannot even keep your eyes propped open with toothpicks because the fatigue is a big fat bear hug swallowing you whole. Everything around you is extra-bright, extra-loud, extra-confusing and the whole world looks like they are racing by in a frenzy of activity, as if on fast-forward. Headaches, tummy aches, you-name-it-aches, if it can bother you, it will. I am still trying to figure out how to not indulge the rampant hormonal and chemical surges I feel charging up my senses, making me a very grouchy and difficult person to deal with, even towards myself.

I want to build a box, a sensory deprivation tank I can escape to when flares or hormones or brain chemicals erupt with the force of Old Faithful and my reality turns bleak. I will steam and stew and work myself into a lathered up state over the stupidest things! An irritating phone conversation with a not so nice customer service rep and two hours later I have darn near written a dissertation on how I should have handled her bad attitude differently! Trying to reclaim the lost opportunity of all the smart and quick and sharp words that should have rolled off my tongue in the moment, but didn't. Or that rude comment Aunt Sally made last week about my hairstyle. It takes everything I have to not call her up a full 4 or 5 days later, having rehashed the conversation in my head thousands of times, and read her the riot act! The one I would have read her initially if I was not in such a fog. So I run around and start creating all sorts of issues with my everyday reality, everyday people. Things that are not really a big deal turn into monumental, sanity-stretching and physically-taxing catastrophes. Then once that flare subsides and I settle down, the pain and insomnia and irritation lessen, I usually have a big fat mess to clean-up.

See when I am in a flare I am certain, beyond the shadow of a reasonable doubt, this is how every minute of every day of the rest of my life is going to be...forever. I cannot recall my good days and wonder how I have managed to stay alive given the complete evisceration of my physical and mental being. The misery sponge has soaked me up completely! So I battle. With myself, my husband, whatever telemarketer happens to catch me at a very wrong moment. Friends, parents, strangers, no one is safe. I am angry and full of hate. Everything is annoying, and frequently rage-producing. But this is called a flare for a reason. If something goes up then it must come down, and eventually I level off and realize I am not treading water in a tank full of great white sharks. Jaws snapping at my ankles as I struggle, sputter and inhale water instead of air... Then once I am feeling better I have to start the long and exhaustive process of righting  whatever wrong I have dramatically and often irrationally inflicted. So yes, please bring me that sensory deprivation tank. I can just exist in suspended time, no aggressors or stressors triggering my unbalanced and angry brain. Then I would have not nearly as many fences to mend once I find that day when I wake up and want to live again.

Thanks for joining,

Friday, June 10, 2011

Where Does Your Drama Come From?

I have taken part in my share of drama, theatrics and scandalizing behavior over the years. I understand we all don't always make the best choices for ourselves and often pay steep consequences. But in my late 20's I started getting sick, and my ability to envelope myself in self-induced drama dwindled as real, constant and pervasive chaos in the form of pain and exhaustion consumed me. I laid down the attention-seeking, histrionic-fueled and self-destructive blips on my radar and started making good choices, purely out of necessity. The price I suffered was way too great if I did not. And slowly but surely the friends in my life that fed off that hectic lifestyle fell away, seeking out new folks to bounce on the trampoline of crazy living with. Luckily a few stayed, mostly the solid, progressive, forward-thinking relationships I had forged. Those that could wrap their brain around sickness and limitation and were compassionate and understanding. This was but a small handful. Well six years in, I am glad to report the majority of the life-sucking drama-causing anguish-fueled relationships have fallen away. And for this I am glad. For I just can't dance that tango anymore. My hips can't take it!

I have to admit it is hard for me to sympathetically listen as one cries about a big zit keeping them from partying it up on Friday night. Or another escapade as their already-cheated-on-them boyfriend takes 'em on yet one more round of betrayal. Perhaps needing that new pair of Louboutin's they don't have your size in right now is just not something I can relate to. I understand that problems are relative to the people they are creating a problem for, but if you pile every single stress I have ever had in my entire life on me it still would not be as damaging or incomprehensible as being chronically ill and in pain at all times. Fibromyalgia is so outrageously horrible. And I only ever truly grasp that when the first bad day, on the other side of a few good ones, has done me in. This is perhaps the most filppin' ridiculous illness to try and live with! Flares, insomnia, confusion, senses springing off your body! Pain. Oh my the pain! Stomach problems and hormonal problems and these are but a few of the physical problems, I have not even delved into the emotional. Or practical, like how do you pick up your toddler or maintain a job with any regularity? So no, getting my panties all wound up about darn near four-figure pumps is not something I can much relate to, even if they are really really beautiful.

I believe I can heal from this. I believe that my symptoms can be managed to the point that Fibromyalgia is not center stage in my life. I believe in a better tomorrow for us all...someday. See Fibromyalgia thrives in the face of chaos, confusion, misery, blame, self-doubt and guilt. But it is thwarted by acceptance, pacing, self-assurance, avoiding stress and believe it or not, fighting to squash its ugly head! Do I miss those friends, that drama? Sometimes I do! For it represents a normal long forgotten. But the person Fibromyalgia has forged me into is glad to be done with those emotional ups and downs. My illness gives me plenty of her own. So folks hang in there and be strong! You are seriously sick, so don't take no for an answer. Find a doctor that will help you manage your illness. And figure out how to manage your life so you can create an environment poised for healing and wellness. You must work together as a team to get your symptoms managed.  Keep searching until you feel better.  They may not know cause-and-cure yet but don't let that snatch away your quality of life. Do you see anyone standing around you right now determined to figure your life out, instruct you on how to get better? I know for me the only person that did that was me.

Thanks for joining,

Thursday, June 9, 2011

The Game Of Guilt

Wish I may, wish I might, I cannot seem to get this guilt thing contained! It got the point that I actually looked at my husband the other day and told him it is getting hard to look at him, I feel so guilty. Guilty for being sick, guilty for the financial devastation my illness has caused us. Guilty for the sacrifices he has made and compromises he has been forced into. Guilty for not keeping a clean house and oh so guilty when he asks me to do laundry so he can have some clean underpants the next day. All because he had the misfortune of marrying a person who looked healthy but has been dishing out one medical crisis after another since before we got hitched. And the worst guilt of all, that he still loves me. For every time we have this conversation he flips the table. And of course I would do everything he has done for me and more if need be, if he were the sick one, without hesitation. But for some reason I cannot grasp why what I have to give is valuable enough to love. And fight for and keep hanging on to. This exploration, meeting of minds as we navigate a way to deal with this guilt, for I am shutting down and closing off with greater frequency, brought up a new angle I had not considered before.

My generation. We were raised by the ERA fore-mothers whom, by the time my parents came of age, were stomping and yelling about equality, rights, freedom from the chains of housewife-dom and motherhood. Choices and opportunities afforded to men were not afforded to women. And yes indeed something needed to be done about it. For how can we call ourselves a free country when half our population had very limited freedom? But by the 1980's equal rights were a mess. Men could not open doors or pull out chairs or gesture a stand as a woman excused herself to the powder room while in a restaurant. There was no separate but equal. There was only equal. Feminism had swallowed up femininity. And the female population lost something important while they gained that sought after equality. The natural balance between men and women. The yin and yang. The way we were created to complement and complete each other, not compete with one another. The belief that a woman could "have it all" morphed into a nightmare for many, as high-profile careers or demanding jobs interfered with motherhood, and TV and video games became the prevalent constant babysitter for my latchkey kid generation.

So this brings me back to how I was able to shed some light on my core beliefs and values and uncover what is feeding this seed of guilt deep within my gut. I never expected to not work. I fantasized that one day I would have children and of course stay home with them until they were off to school. Then I would resume my professional identity and we would all sail into the sunset, happily ever after. But I got sick and knocked that boat clear out of the harbor before it had a chance to set sail. And life has been one big fat struggle to come to terms with the physically limiting and emotionally devastating reality that is living with and managing Fibromyalgia. So I have set out on a search. To seek out a greater understanding of these differences between man and woman. Differences I was not taught to know or respect. Gain some insight into how I can set down this very heavy bag of guilt and embrace the role I am positioned to play. Delight in my husband, compliment him, have pride in being his wife. Take ownership of my home and recognize that what I am doing right this second is indeed work, even if the pay is terrible and I enjoy it quite a bit. 

Thanks for joining,

Tuesday, June 7, 2011

The Drugs Are Making Me Fat

As my loyal readers know it is something I am very self-conscious about, obsessed over and embarrassed by. My weight. Ever since I was a pudgy little girl I have struggled with extra pounds. But in the past it was more a matter of calories in vs. calories out. A decision to eat healthy and exercise, and then doing it. When I look back at pictures from age 12 to 22 I do not see a heavy girl, I see a normal one. Since college ended and I domesticated I have been in a consistent yo-yo championship with my weight. Up and down, up and down. There was always a good reason it went up. I was working too much, traveling for my job and always eating out, every meal a quick throw down the throat. The first time I lost a significant amount of weight was for my wedding. We went to Weight Watchers and there was so much fake food involved to keep the points viable it is now what I would consider a poisonous way to eat. But I lost 30 lbs. and looked great on my wedding day! After my honeymoon I did not continue counting my Points and the pounds slowly but steadily packed back on over the years. Then I lost a bunch after my near-death triglycerides-in-the-7,000's pancreas attack. I stopped eating fried, creamy, cheesy and blatantly fattening. I did this for years and was very satisfied. I could eat pretty much anywhere. Even Taco Bell has a soft-tortilla grilled-chicken with tomatoes-and-lettuce taco. I also started exercising, a lot. Along came Yorkie who was a little hellion of a puppy. I would ride my bicycle around the snobby hills of the Peninsula with him chuggin' along right beside me, oblivious to the shouts of cruelty flying from the cars we rode past. He loved it, his little terrier spirit running wild and free. I went to classes at the gym. Weight training endurance, yoga, pilates. All in the same week, every week. I was in great shape and looking better than I ever had. The doctors marveled at me. Most patients don't make true and lasting change to their health after a scare like that, You are so committed and dedicated, on and on. Then one day I got sick and never got better.

I lost function, lost the illusion of a "normal" life. Fibromyalgia & CFS took that "decision" of diet and exercise away from me, for I was in so much pain and so fatigued I could hardly get out of bed in the morning, let alone exercise. I was extremely nauseous from the pain meds and could only stomach comfort food. That one there cost me about 20 lbs. My first nemesis was Lyrica. It helped me in dozens of different ways but once I got up to 450 mg the weight came torpedoing onto my hips and gut at the speed of light, faster than I could blink. And I found myself a whopping 30 more pounds with that one. Then I went off of it and lost about 20 lbs., really feeling I was on my way to slow and progressive weight-loss. The sustainable kind. But along came an intense and solitary tango with arch nemesis! My hated savior. For it treated the Vasculitis-caused strokes in my brain while sending me into a frenzy of crazy. It was all I could do to keep from bouncing myself off the roof I was so high. And boy did I eat! I would pop truffles into my mouth faster than they could melt. I ate darn near a Costco-size tin of Danish butter cookies. In like 2 weeks. You betcha' I gained those 20 lbs. back, plus a lucky 10 more! 

Part of the weight I gained is my "fault", and partly the side-effects of various medications. But I have discovered blame is a no-win game in life. It does not really matter what put it there, all of it is my responsibility to deal with. But for a long while I was stuck, heavier than I had ever been and doing nothing about it but being absolutely miserable as the clothes I actually fit into dwindled down to stretchy tank tops and yoga pants. And then one day, about a month ago, I became aware of an ugly monster called deconditioning. I saw myself in a mirror wearing a bathing suite in broad daylight and  nearly cried! I noticed how droopy and hangy and jiggly everything was, and I quickly found my elusive friend motivation. My friend and I have since been pushing and pounding and stretching and bounding my body as many days a week as I can possibly stand. And yes, the weight is dropping off. For good this time, for I can't keep doing this up and down to my body. Yo-yo dieting is entirely more damaging than just staying overweight. This is one area where being fat is actually healthier and your body does not give you an A for effort. See when you diet, eat foods in ways that are limiting or restricting and not lifetime sustaining, you lose muscle mass as well. Then when you start eating like a normal person again, for you can only deprive yourself for so long, you gain the weight back. Plus usually a little more. And you don't get that lost muscle mass to come back. So you have actually raised your risk of a cardiac event and body fat percentage, even if you just go back to the exact weight you were before! So once again I have made a decision, and I am happy to report it is working. Can I please just not have any more health set-backs, please?

Thanks for joining,

Monday, June 6, 2011

How To Be Happy

I actually had my dad buy me a book once with that title. It was a small and whimsical little picture book purchased at the overpriced bookstore in the center where the movie theater is in downtown San Francisco, which of course by now I have long forgotten the name of. I was severely depressed and looking for a way to find my light, my happiness. Woven into a bunch of brightly photo-shopped neon frog and fish pictures, this book used insightful quotes and pondering phrases to inspire uplifting thought. It basically stated happiness is a choice. It is not dependent on outside circumstance. You choose to see the positive and march forward, never looking back or down. Unfortunately that did little to lift my intense, constant and pervasive despair. I needed a better answer than that! For I was slowly losing my grasp and did not know what to do about it. After a youth spent self-medicating my feelings away here I was, 25 years old, newly and happily married, living in the city of my dreams with my career going quite well and so utterly miserable all I could do was mope and cry. I was angry all the time. Angry at work, angry at home. I was angry at the bar downstairs from our house we spent way to much time at and angry with the homeless person at the end of my street. I was just plain angry at being angry! I suppose you could call this my early-life crisis. So many of my friends were having babies during their post-college post-marriage days. Flinging themselves into the frenzy I can only imagine that motherhood is. Or they were strutting their single Sex In The City-selves around town, partying it up and living large. I did not fit into either world.

For I was married yet alone. My husband worked 40+ a week and was pursuing 2 finance undergraduate degrees. He was really really busy. I was making friends from work, but all anyone ever wanted to do was go out drinking, and although this was boring it was indeed an effective way to pass the time and forget about being miserable. And we most certainly were not ready for that baby, for about 100 different reasons. So I existed in this vortex, this void, and would march up and down the hills of North Beach, popping into churches I never went to, pleading and crying to God please please make me not feel so much pain in my heart! Seething as I furiously speed-walked past the happy friends and families shopping and playing and eating on Pier 39. Bitterly I watched the sea lions fight for top-dog alpha in the animal world, beached on algae-covered pilings in the bay. Any semblance of normal happy life devastated me, for it was a sharp reminder that I was anything but normal and happy. Finally I sought out counseling. It helped, substantially. I learned about my neglected inner child and default behaviors and lack of boundaries or setting limits with myself. I learned that my life was my choice. I could make it what it was. Not necessarily easy, a tremendous amount of hard work actually. But ultimately mine to do with what I will.

After 3 years my therapist let me go. Well really she moved away, and I was referred on. And right about then is when I got sick. And I thank God I had obtained, retained and honed the life-skills my therapist had helped me discover and use. I was such a mess as I was folding into the cyclone of Fibromyalgia and CFS. What if I had never seen that woman? What if I had still been horribly depressed? I shudder to imagine what a depressed me would have done with a sick me. But does depression suppress the immune system (I think yes), so we become more susceptible to infection and disease? Did this depression help precipitate the viral infection that gave me CFS and damaged my central nervous system, leaving me with Fibromyalgia after all is said and done? So much research goes into the Fibromyalgia-depression connection. I can tell you I have had depression, and I have Fibromyalgia, and I have been depressed because of Fibromyalgia. They are all 3 very distinct and individual states of being. Yet many of us are put on anti-depressants as the first course of treatment when we fall ill and start seeking out medical answers that no doctor can seem to find.  Told we are depressed, that is all. Hogwash!! Well I for one look forward to getting to know these answers as the dawning of a new day of Fibromyalgia awareness and research is ushered in, spurred by the thousands of patients that want to know too, want to get better. Patients who refuse to shut-up and suffer in silence. Patients that demand a quality of life, and don't stop until they find it. Patients that are on a crusade to change the reality of living with Fibromyalgia...what we call...The Fibromyalgia Crusade!

Thanks for joining,

Friday, June 3, 2011

Ignoring The Message

I have a serious mental block against checking my messages. It has pissed everyone in my family off at one point in time or another. But I feel the oddest sensation of bliss when my voicemailbox on my cell phone fills up full. And I leave it there for days on end, those that are trying to get a hold of me forced to call multiple times or alternate phone numbers with nowhere left to leave a message. I am not any better with my answering machine at home either. In fact I just cleared 27 new messages last night. Now its not like these are calls from a few days. I am not nearly that popular of a person. It will take a good month to month and a half for this many calls to accumulate. Which lends itself to the question of how someone gets a hold of me in an emergency? My mom has a job where she travels constantly and guilt-teases me that she would be buried in the ground before I even checked my messages to find out she was dead. I suppose she is right. But nothing really seems to dissuade me from this negligent habit.

And as I was trying to explain to my father last night on the phone, who I was talking to because I returned his 2 of the 27 messages, I have a problem with this. It must be a big overgrown thorn-bush of rebel inside me that firmly plants her heals in the ground and refuses to call my voicemail. Never mind the fact that I usually have talked to the lucky empty-voicemail recipients dozens of times between when their message is left and my actual retrieval of it. So its not like anyone in my life is ignored. But the job I had when I got sick required me to be on my cell phone 18 hours a day, at any given time. And if not on it, at least available to be. Messages were something I checked with anxiety, uncertainty of what shoe was dropping next, impending doom clouding my doorstep. It got to the point that I was pretty much fight or flight ready for the majority of my waking hours, and sleep but a brief unrestful respite from the constant and pervasive stress. This was selling lipstick and blush, for crying out loud! It does not get more important than that!

So my sloppy message retrieving habits formed in reaction to this albatross around my neck, and I came to learn how to neglect my voicemail. For checking my messages induced anxiety and anxiety induced stress and I was certainly trying to ignore the ill effects stress had on my existence. But actually not checking my messages was a very hard habit to pick up. I was Pavlov's dog over here, every time a ding would beep from my phone I was on it, problem-solving or soothing my boss's ego or interviewing a new employee. So letting it sit, ignoring it, was actually a huge victory for me. My brain has been programed to be accessible at all times. To learn how to look at the blinking message light and turn away, to see I have 15 unheard voicemails and hang up my cell, those were hard for me. I felt like I was shirking my responsibilities, my obligations. Strangely enough the process of letting voicemail go was extremely important to my acceptance of this illness and the limitations it places on my life. I saw an instant stress-aggressor and set out to learn how to avoid it. So for now I am always just an email or text message away, but if you just leave me a voicemail, you may not hear from me for a while.

Thanks for joining,

Thursday, June 2, 2011

We Made Friends!

This weekend while my husband and I were lying at the pool we met another couple. Around our age, good people and both of them were actually interesting on their own. The dating stage of couple friendships is funny. Its extremely rare to find a good match, all around. Often I find his friends girlfriends are very young and I know he finds my friends boyfriends very dull. Plus with all my ailments I would assume I am an odd person to get to know. So how do I do it? How do I present myself to this woman that has 3 jobs and more energy than the Energizer bunny? My husband and I are home-bodies. Not so much by choice but more a matter of circumstance. I am sick and we are broke. We watch a lot of TV and hang out with our dogs. Maybe venture out to get a yogurt, coffee, the dog park or our all around good time Friday date night at Costco. An afternoon lying at the pool. And that is about as exciting as it gets. But for some reason they were drawn to us and I found myself cautious to reveal too much about my reality, my limited life, my illness.

See the strokes are so much easier to talk about than Fibromyalgia. They are legitimate and understood. Like cancer, when you tell someone they comprehend the severity of the words you are saying. But with Fibromyalgia we are lucky if someone has even heard of it, let alone knows anything about it. Yet it is what rules my life, structures my time, absorbs my existence. For watching this woman bound around with endless energy reminded me how much I have lost. I was like that once upon a time, too. So as the weekend progressed my oddities sprouted bigger and bigger branches. My chemical-fobia organic-sunscreen sun-worshiping don't drink much alcohol because I am on medication-self revealed herself. And I realized I must come off like a total nut! With all my strange ideas about health and wellness, how the refined, processed, carb-heavy food-guide pyramid of the 80's is what has made our country fat, how I scoured the racks in the grocery bakery until I found hamburger buns with no High Fructose Corn Syrup, my known nemesis. Oh and how the now-recommended eating style of 5 small meals a day is just the establishment's scamming way to correct themselves of the debauchery that was that food-guide pyramid, decades later. Yeah, even to myself I sound like a paranoid conspiracy theorist.

And my mind went to an RSS feed my blog is linked to. The emails I get from them are right in that vein. Emails about UFO's or the government injecting monkeys with ebola or nuclear missiles ready to attack from some mid-east country or another. Slowly it dawns on me that I am indeed that paranoid conspiracy theorist! That is probably why they contacted me to link up! Because I am running around shouting to every computer that stumbles on my blog or support site on facebook a very controversial point of view, that Fibromyalgia is a legitimate disease with a specific cause, though it remains yet undiscovered. And enough people agree with me on that fundamental fact and have hit this blog or The Fibromyalgia Crusade or The Fibromyalgia Fun House so that I am garnering a wee bit of attention. Well, good! I am proud to be a paranoid informed conspiracy theorist with evidence to back up my claims that has managed somehow to rid myself of the most debilitating part of this illness. Link me all you want, wherever you want. I am proud of the publicity. I am proud to spread awareness. But when I bring it back home to my personal life it is so complex. How do I say it? How do I tell a new and potential friend I just can't do what everyone else can?

Thanks for joining,