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,

Leah

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,

Leah

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,

Leah

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

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,

Leah

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,

Leah

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,

Leah