Keep Up!

I love America holidays. All the years spent working retail made winter holidays, well, not so much fun. So I made my consolation for gritting through Black Friday frenzies and extended Christmas hours a big fat rollicking Memorial Day, 4th of July and Labor Day. Of course as illness consumed my life a big fat rollicking anything ceased to exist, ever, but I have worked relentlessly to get some of me back. Well this weekend just past I put all that hard work to the test. My husband and I packed Yorkie & Porkie snug as two bugs in a rug in the backseat of our car and took off on a little getaway down highway 10 to the Pacific ocean. Home to visit loved ones we left behind many years ago and just don't get to see all that often.

Friday night was great. Of course I ate too much, drank too much wine and stayed up far too late engaging in scintillating conversation. Saturday morning arrived with a rush. Oh man was I slow moving! Molasses me finally got it together and we took off to a friend's graduation party, late and racing the clock. As we sat there stuffing our faces with tacos I realized we were expected elsewhere in two hours for another meal. Gluttony seemed a certain future destination, but intent on living in the now I stuffed down the out of control feeling sneaking up on me. Relax, I told myself. Enjoy the action packed day for what it is, you just don't get that many of them. On Sunday I found myself exhausted, sitting at brunch about to face plant into my bowl of fruit. With a cup of coffee in one hand and a glass of champagne in the other, I knew the push to get through this one was gonna cost me. And it did. 

But it was worth it, for this girl was in dire need of some fun. A break from the monotony of my life, the seriousness of illness, the frustrations of just not being able to keep up with with the world at large. We rolled back home Monday night and I was so stiff and sore I could barely make it up the stairs to my peaceful little cocoon I call home. However for once I am not angry at the aftermath of my vacation. Not yet ready to reside in the land of the normals, three days later my head is still reverberating with clutter, my senses jammed up and overloaded. Yes the price I pay is steep, but with amazing clarity I realized how far I have come. I could not have done half of what I did even a year ago. All the hard work to get this illness managed funneled into one weekend showed me life can still be lived, experienced and enjoyed. It was a whirlwind, and man am I glad to be back in my controlled environment, but I had a blast and gained some perspective so consider it one more step of success in this battle so hard fought and won.

Thanks for joining,

Leah

All We Have Is Today

It has been to my absolute irritation and immense frustration ingratitude and negativity have sneaked their way into my heart. My mind tells me to be grateful but my soul is screaming out in mourning. I've been a bit pissy about life, sitting under that all encompassing and life-sucking umbrella of fear. Yes other people have it worse, yet other people have it better too, and that seemed to be all I could focus on. So here I sat wasting my days with bitterness and hopelessness. In the fashion with which I embark on everything in life I got mad at me. Why can't I snap out of this? What good is counting my struggles, not blessings, doing for me? And how do I proceed in life so emotionally worn with no guarantees it won't get any worse? Because I know first hand it can get oh so much worse.

I flipped on the TV yesterday to a movie I have not seen in years, since before I was sick, actually. Born On The 4th Of July. Oh it didn't take me more than 20 minutes to find that gratitude and gratefulness I have been so desperately seeking. I can handle my problems, I thought to myself after watching Tom Cruise try and navigate life in a wheelchair. My problems are mine and I own them. But what the guy whose life the movie was based on struggles with, oh no I could not do that. Slowly the wheels in my head ground to a screeching halt and started turning in a positive direction for a change. I felt my burden lift and the immediacy of my misery vacate. Finally. Well if I would've known this movie would help me so much I would have put it on weeks ago! And still happier I became when I was able to swallow and accept that indeed, any number of catastrophic and horrible things could happen to me on any given day. But not today, not right now, so why am I worrying about a future I cannot control? After trauma hits is when to deal with it, but not today, not in my precious present!

What this whole experience served to show me is the importance of being honest and feeling those feelings, no matter how unpleasant they may be. For if you don't acknowledge them how can you deal with them and move past it? This is a process. A never ending process as we cycle through life with something pretty devastating in its own right. When I started this blog it was with absolute honesty. I ripped open my guts and poured them out. It hasn't always been pretty, or cheerful and uplifting. Quite frankly if that was all I gave I would want to smack myself for being so obnoxious. While I do try and search for silver linings I also have no interest in the fake or forced in life. What you get from me is real. The good, bad and ugly of the ups and downs and sideways progress of a female living with Fibromyalgia.

Thanks for joining,

Leah

Leave Me Out!

A few weeks back out of town friends came to visit, a couple we don't get to see that often. They stay with her family who lives here, and my husband and I are friendly with them too. Well the two sisters and their respective husbands got into a bit of an argument. One of those "one too many cocktails" disagreements that really aren't that important, in my opinion. But not to our friends! They turned it into a big to-do, all of them. This spat became over dramatized and threatened to ruin the trip so my husband and I not so gracefully extracted ourselves from the equation and told all four adults they were being lame. Then we watched it turn into quite a struggle, neither party willing to bend or fold. I didn't see them working it out anytime soon. They were both too busy "sitting in right" to appreciate the other's perspective. 

But the day before our friends were scheduled to return home we got the call to come hang out. We thought everything had been worked out between the two. Or else they wouldn't have called us, right? Of course I had already spent my spoons elsewhere and wasn't really up to it, but push I did. From the second we walked in the door a big fat elephant in the room cut the tension with a knife. Truce maybe, but there was no resolution. Just pissed off people stomping around and shooting bad vibes at each other. I didn't even set my purse down before we turned around and left. No thank you!

Of course when we got home I was pissed. I was now upset, spent energy I didn't have and allowed myself to be sucked into an unpleasant situation that could have avoided if I'd thought of, shock gasp, me first. But I didn't, I never do. Why? I really analyzed. I am begrudgingly known for not checking my messages, calling people back or returning texts. Not doing much really to facilitate communication with other people. Learning to not apologize for it took a lot of work, but it's just the way I am now, the post-Fibro me. I realized situations like this one are precisely why. Because when people get an inch of me it takes nothing to make it a mile. A speck of my reciprocation somehow turns into a willingness to fight their battles with them. But I can't do that, I can barely fight my own. I have become reclusive since getting sick and don't enjoy it one bit. I miss having a life. But what a thin line we walk, navigating one more slippery road of chronic illness, living sick in a world of healthy expectation.

Thanks for joining,

Leah

*The Spoon Theory by Christine Miserandino

The Independent Nurse

I have met many people since starting this blog and The Fibromyalgia Crusade. Some have allowed me to interview them and agreed to share their stories. This is one of them...

Dolores* was a nurse at the big hospital in town. She worked the night shift in the ER for many years, thriving on the high-octane pace. Numerous patients claiming to have Fibromyalgia graced her care during this time. The common attitude about the hospital was that Fibromyalgia was a big fat joke. Bunch of fakers wanting to lay around all day and bilk the system, high on drugs and complaining about nothing. Dolores would humor them but never liked giving the narcotic injections they were obviously desperately seeking.

As she aged she started slowing down and her job eventually became overwhelming. Transferring to the maternity ward she found new mothers and fathers with the occasional hysterectomy a much more agreeable place to spend her evenings. It was to her absolute horror when one day physical pain hit so bad she could not get out of bed. Every inch of her body throbbed with her pulse, fire zipping through her like an electric conductor. The blanket hurt her skin, her hair hurt her head. This pain had been mounting over the last few years, but certainly never this bad.

She went to see her doctor who ran every test, scan and procedure available, yet there was no explanation for her suffering. Outrageously frustrated, the pain became so bad she started missing work. Dolores could no longer complete four 12-hour shifts a week and was forced to switch to part-time. As her doctor continued to rule out any and every illness which shared her symptoms her pain and fatigue grew nearly unbearable. She made it to the assisted-living care facility where her mother lived less and less. This brought more and more guilt laden phone calls that only compounded her stress.

Her solid reputation took terrible hits as she failed to complete her work duties. Holding patients up and changing their beds became damn near impossible. Some days even the newborns were just too heavy to hold. Dolores refused to accept this Fibromyalgia diagnosis that was the best thing her doctor would come up with, and sought out second and third opinions. She knew everyone was snickering behind her back. But this is not Fibromyalgia! she wanted to scream. Panicking, she refused to believe anything so horrible, a pain this grand, was caused by that wastebasket diagnosis. There was no way all those patients she scoffed at behind their backs for all those years were feeling this. This was living hell.  

Slowly but surely her world crumbled all around her. She lost her job, then her health insurance. Her daughter got pissed at her when she refused to watch her grandson. Dolores could hardly keep her eyes open and knew she was not capable of looking after an energetic two year-old safely. Work friends ceased to be friends. Her boyfriend decided he was not up for this, eight years her junior and unimpressed with her rapidly shrinking capacity. Her condo was paid off but she was sucking her retirement dry, having long since exhausted her savings account.

She hit her own personal bottom the third time she was denied for permanent disability from Social Security. Seeing no hope, no possibility for the future, she swallowed half a bottle of Vicodin. But she was lucky. Her nosy neighbor walked past her kitchen window and spotted Dolores passed out on the dinette table, the empty bottle of pills resting upright on the floor. Dolores woke up in the ER, lying on her left side with that thick tube down her throat, gasping for breath as her stomach fluids pumped out her mouth. Her former colleagues stood around and clucked their tongues. She wanted to die from embarrassment.

It has been eight years since that horrible afternoon. Dolores was offered a hand up by a lady she barely knew. A woman she saw a few times a day and nodded a terse head in greeting towards, her next door neighbor. Gloria* was a hippie, earth mother incarnate. She had wild carrot orange hair and smelled of lavender. And was young to walk with a walker. Gloria sat by Dolores’ bedside and they just talked and talked for hours.

Gloria had Lupus. She gave Dolores a crash course in the world of chronic illness. Gloria taught her that accepting her diagnosis, deconstructing her life, and building it up again in a way that supported her limitations was possible. Her new friend showed her there was life after Fibromyalgia. Gloria introduced Dolores to the world of alternative medicine. Holistic philosophies became Dolores’s saving grace. She hired a disability attorney and with better documentation was approved on a new claim. Medicaid was a few years to follow. She found a doctor, not affiliated with the hospital, who has helped her find a specific mix of medications to keep her depression, pain and insomnia at bay.

The shame and embarrassment of having Fibromyalgia fades as the years pass. Most of the people in her former life are not included in her current one. Her mother has made friends at the facility she lives in and is not nearly as much of a nag. But her daughter has not accepted Dolores’ new lifestyle and resents her mother for making such a big deal out of nothing. One of the hardest parts of this whole process has been learning how to allow her daughter to not believe her, and be okay with it. Some days are bad and some days are better. Yoga keeps her muscles from coursing with too much pain. She carefully budgets as much acupuncture and massage as she can afford. It was quite a journey to get to this place and Dolores is still trying to forgive herself for all those poor patients suffering with unbearable pain she snickered at and treated like drug addicts.

Thanks for joining,

Leah

*All character names are fictional to protect the anonymity of the contributor.

Fibro Dumpty Had A Great Fall

I've had Fibromyalgia for seven years, been in remission from CFS/ME for five years and had that Fibro beast managed for about three years, give or take depending on the week. So what the hell is wrong with me? Why did I decide to challenge Fibromyalgia? How come I didn't take my own word for it, that this illness is pretty much as awful as it comes? What did I think was gonna happen if I answered the unsatisfied call deep in my soul to live a normal life? Had Samantha Stevens twinkled her little Bewitched nose, my fairy godmother waved her magic wand or the trailing wishes of a shooting star just come true? Did I honestly believe if I prayed hard enough or thought positive enough or acted healthy enough, I actually would be? Humph.

Whatever madness my brain existed in these last few months, something was radiating out of me. A need buried down inside that's never really gone away no matter how hard I try to convince myself I have accepted my fate. I was angry, miserable, desperate and sorrowful. Mourning such a deep loss, the loss of life as a healthy person. This mental relapse, refusal to accept my health problems, seemed to come from nowhere, rising up like Moby Dick in the night. Blindsided, I set out to challenge the very core of my existence by proving to myself if I kept a clean house and exercised regularly and put on makeup everyday, actually leaving the house to exist in the land of the living, I could stand to live this life forever. As long as I could do just those things, keeping to an active schedule of my own devise, I could. I have done this to me many times before, but this time my body kept responding so I kept pushing. Knowing the inevitable did little to soothe my stirrings of discord or curb this irresponsible behavior. I think I actually believed it was over and I was just babying myself.

And then Mother's Day came, the same day my body finally got fed up with my delusional mind. I woke up hurt and sore, puffy and crying. Putting one foot in front of the other was way more than I could do. In the back of my mind I knew it was over, my mad dash to the healthy line. I could hear a grateful murmurer of finally reverberating around my mind, my body oh so grateful and relieved. Now I set about putting not only me, but my quickly imploding life back together too. Like most trauma in life acceptance is relative. Working really hard to get to the other side is critical, however I find my ability to peacefully coexist with Fibromyalgia comes in waves. I will get there, for a while. Then I am not. Push to the crash, and I will get myself there once again. So now I sit here waiting to see how long it is going to take all the king's horses and all the king's men to put Humpty-me back together again.

Thanks for joining,

Leah

You're A Pretty Girl, It's A Shame You Are So Unhappy

I stared back at my doctor slack-jawed, open-mouthed, shocked. This woman had seen me through the worst health of my life, was the one to finally diagnose me with Fibromyalgia and CFS/ME. Here we were two years later, and she was thinking I was just depressed the whole time? I wanted to scream in her face, jump up and down and shake my fist at her, call her a long string of really bad curse words. But that would only make me look crazier, plus I didn't have the energy. What's worse is she was one of the few who actually helped me. So we sat there battling back and forth, fighting over pain meds and how I was supposed to work my retail job. I couldn't stand up without feeling like I was crushing myself, and I was supposed to run around a department store caring about what shade of lipstick somebody bought? Finally my doctor looked me square in the eye and said, "I am not going to give you anything stronger. Once you get on the pain patch you don't ever come off. Go get a massage, acupuncture, something. You need to figure out how to make yourself better!" And with that she stood up with a flourish and flounced out of the room. Did that really just happen? I thought to myself. My doctor telling me I need to figure out how to make myself better? That was rich. 

Oddly enough desperation is what precipitated every turning point in my recovery, and this encounter left me with loads of desperation. So I did what she said, set out on a quest to turn over every rock and look under every stone in an attempt to gain some quality of life back. I researched until my eyes dried out, beat the proverbial crap out of myself because my level of functioning was so low. I cried, threw hourly pity parties, hated everyone and everything around me because I simply hurt so bad I could see or feel nothing else. Still working, I couldn't afford not to but it was taking me down very quickly. I was confused and bewildered, shocked this had become my life. But I was able to find a little kernel of fight way deep down inside and began pouring this tremendous amount of tumultuous emotion into it. Started taking responsibility for my part in this nightmare. Not causing it, but in repairing it. This was when I lost all faith in modern medicine. They had no knowledge about my condition and were not going to fix me. As wrong as it was, it really was up to me.

My quest and research opened my eyes to major truths between man and nature. It led me to view my entire body as a complete life cycle. I started taking into account every bit of food I put in my mouth, the stress I existed in, exercise I hurt too bad to do, medications I took and sleep I didn't get. I became aware of the lie the modern American lifestyle precipitates and how that alone causes a multitude of serious illnesses. When I would feel even remotely capable I fluttered into a flurry of activity, desperate to catch up with my life that was racing fast ahead of me. Yet after every push there was a crash, but how do you not push? This combat was mentally, physically, emotionally and psychologically exhaustive! And there was no way to get away from it, no relief that was not in the form of a drug-dazed Percocet haze which in many ways was worse than the pain itself. So I broke down, and Visa and I went to a specialty clinic. They were knowledgeable and compassionate, but quite expensive. They enlightened me to so much about my body. My immune system was null. I was host to a multitude of viruses and infections. Candida was out of control, thyroid whacked, testosterone non-existent and at the age of 29 my human growth hormone was that of a 86 year old. Literally. I had not had a dream in years and was never reaching stage four sleep, critical for growth hormone production and self-repair of the physical body. 

The clinic treated a plethora of problems with medication, hormones, vitamins and supplements. I started gentle yoga stretches and forced myself to shuffle around the block with my puppy. Quit packaged, prepared, processed, fried and refined foods. I finally accepted I was sick but was going to get better, not giving myself any other option. It was so hard and so much work! Each step forward met with a hard shove back. But I pushed harder. I refused to live life so sick I could not function and did anything and everything I could to improve my situation. I went on heavy-duty anti-virals to rid myself of the primary cause of CFS/ME, and endless bouts of other medications too. An incredible acupuncturist came into my life and I entered an entirely new realm of healing with her. I did the Lyrica and Cymbalta dance once they became FDA approved. But I fell prey to their side-effects, spent the better part of two years of my life in a half-conscious state, so medicated I didn't feel pain but I didn't feel anything else either. My 5'6" frame ballooned well up to 230 lbs. 

Oh you name it, I have tried it. Some of it worked, some of it didn't and some of it made me worse. But after years of exhaustive work my illness was managed and I could function again. You better bet your sweet bippie before I moved to Arizona I made one last appointment with that doctor. I walked in, healthier than I had been in years. I told her what I had done, shared my resources with her and watched her in amazement as she said, "Wow, you really were in pain, weren't you!" And then I tried with all my might not to kick her in the shin as I flounced out of the room in a flourish.

Thanks for joining,

Leah

This blog was originally published on 9/6/2010.