The Kiss Of Death

Long ago I was in a car accident and sustained whiplash and a concussion, among other things. Most of my injuries cleared up pretty quick save for one nagging lingerer, the right side of my neck. To relieve pressure that would cause neck pain and headaches I started cracking my head from side to side. Snap, crackle and pop multiple times a day for the last nineteen or so years. The first sign of a repetitive use injury reared up in college. When I would type a lot my wrist would hurt. So I'd put on a carpel tunnel splint, turn in my term papers and wait a couple of days for it to clear up. My career as a makeup artist aggravated this injury as well. Hinging my arm out from my body to blend eyeshadow and puff on blush gave me a numb and tingling arm with a hand which wouldn't grip. When Fibromyalgia crippled me I actually lost use of the arm and hand entirely. My current profession behind the computer is not very friendly towards this problem, either. I now use an ergonomic keyboard, wrist beanbag and support my elbow on the chair arm or face dire consequences.

When this numbness and tingling takes over I usually have my husband rub my neck knots with icy-hot, ice it and rest. Well this past week my husband took a few days off work and we ripped apart the office. Organizing, filing and trashing clutter and junk. It felt great. Until my damn neck and arm started acting up. The pain got so bad I was ready to punch my arm through the wall to distract from the fingernails on the chalkboard anxiety taking me over. So he grabbed the icy-hot and dug in. But I got sick. Within five minutes I was running towards a spinning bathroom to puke and pass out. I didn't do either, thankfully, and sat in front of the fan sipping water wondering what the hell just happened. I reached up and rubbed the knot lightly and there it went again, a flash of feeling like the worst flu that keeps you plastered to the bathroom floor all night long. So I was able to recognize the link. But with a history of strokes bells and cymbals start clanging.

So today I went to the doctor and remembered why I am so damn frustrated with our modern medical system. Long story short my Vagus nerve was stimulated from the massage, causing the nausea and spinning. No strokes, she was reasonably sure. But no acknowledgement my pain was serious, either. And within minutes I morphed into that poor little girl from seven years ago, running from doctor to doctor looking for help, a diagnosis, somebody to take me seriously and believe my pain is real. The girl who fought so hard to obtain a diagnosis that is the kiss of death on a medical chart. Fibromyalgia is such a nightmare. If you look too good they don't believe you are sick. If you look like crap they think you are depressed and crazy. If you go in with a list of problems a mile long they get overwhelmed and only address the top two or three, leaving oodles of unmanaged symptoms. If you complain and whine they don't want to help you. If you are proactive and positive they never really see what is truly going on. So screw them, I have to say. The best they had to offer was a neurologist...in November. I am going to see an acupuncturist and chiropractor and see if I can get help with this problem that way. I am not that girl from seven years ago. I am wise and worn with the reality of living with Fibromyalgia. I am not going back to desperation and hopelessness. As the old adage says, if you can't go up the bloody mountain then just go around it.

Thanks for joining,

Leah

Awareness Please!

"If you know neither the enemy nor yourself, you will succumb in every battle." Sun Tzu, The Art of War

The definition of the word crusade is to advocate for or exert oneself continuously, vigorously, or obtrusively to gain an end for a certain cause or person. Well I am on a crusade to clear up a few things about this misunderstood and diverse illness known as Fibromyalgia Syndrome. Quite frankly the state of affairs is a mess. Medical science has not uncovered a source, the root cause of this condition. Progress has been made in recognizing it's not a rheumatic illness but instead neurological in origin. But patients experience sweeping differentials in symptoms and severity, successful treatments and management, and core beliefs surrounding the cause of the condition itself. Awareness efforts are disorganized and patients often judgmental, smug or incompassionate towards each other. Folks who have recovered can preach how something worked for them so therefore will work for everyone. People who still suffer may believe another persons recovery or management means they must not have really had Fibro in the first place. But this is not a one-size-fits-all illness!

The Art of War by Sun Tzu is an ancient and brilliant wealth of Chinese philosophy. It's concepts are still widely used today in both business and political strategies. One pearl I especially appreciate encapsulates the action of creating division among your opponent. Entering their camp, infesting and spreading dissent among the masses. If they are busy fighting themselves they can't fight you! Without ever even going to war you have already won. Sadly I look upon our community as the opponent. In our anguish we have created so much dissent among ourselves that is exactly where we sit. Lonely, isolated and desperate, internalizing the experience so it can only be seen from a limited and pain filled individual perspective. So broken we cannot even begin to come together as a collective and arm ourselves to change the reality of living life with Fibromyalgia. But we are not alone, there are 6 million of us just in the USA.

I believe with a change in mentality we can rise above this and focus on the true enemy. Doubt, disbelief and ignorance. Our real opponents. What I am proposing is not easy and requires an opening of the heart, mind and soul. It challenges whatever comfort zone we have created as a way to survive each day living in throbbing, shooting pain. Slipping into a thick coat of armor to protect ourselves as we venture into the outside world. But I am hard pressed to find a Fibromyalgia patient satisfied with the knowledge, treatment, awareness, research or management modern medicine has to offer. Something has to give, and it starts with us! Search your heart and mind and see what little bit you can do to be a small puzzle piece in the huge revolution necessary to change the way each person with Fibromyalgia experiences life going forward. This illness is hard to define, difficult to unite and darn near impossible to mobilize, but I believe we the patients can do it. Accepting our differences is mandatory. Standing as a collective patient body and demanding recognition, respect and results is critical. Hope is paramount. But we can do it.

We are all on our own journey through this thing called life. We have our distinct challenges and individual theories and beliefs and things we are willing or not willing to try. The point of uniting is to dispel forced change and expressed criticism. It is to embrace respect and compassion towards each other. I have recovered leaps and bounds from the disabled and hopeless woman Fibromyalgia broke me down to. But I can only speak to what has worked for me. I cannot tell someone else what will work for them. We each have to figure it out for ourselves. So research, learn, read and educate yourself as much as possible. Don't give up on the never ending nightmare of living with Fibromyalgia. This disease will take everything if you let it, but be stronger and push back harder! This is your life we are talking about. And please remember to treat yourself well, for that is the first step in showing others how to do the same.

Thanks for joining,

Leah

This blog was originally published on 9/19/10. Boy was I in an impassioned Prednisone rant! Nearly two years later I want to thank you, those who read this blog. Those who have taken action, spoken up or even simply started respecting themselves in a whole new way knowing we may be isolated but are far from alone.

Who Has Your Ear?

A few weeks back I bought a bag of bananas at Costco. Mostly green with a little yellow, just the way I like to buy them so they don't turn brown in two days. Well two days later I look over and the whole bunch was past yellow and speckled with rotting brown patches, not just spots. I scrutinized the bunch, totally pissed off and confused. They went straight from green to spoiled, what happened to my yellow? Upon inspection I found one banana in the middle of the cluster actually rotting in its skin. It was mushy and oozing liquified banana juice. Nasty. So I threw them all away (yes I know I could have made banana bread but didn't). Then I got to thinking about what a ridiculous metaphor this is for life. There is wisdom in the expression, "One bad apple spoils the bunch." Because it does! The one rotting banana ruined all my other bananas, rendering them unable to be consumed in mere days.

What about people, attitudes, and opinions? The things we unwittingly surround ourselves with in our everyday lives. My experience tells me negativity is as infectious as a rotting banana. Fear is stimulated by the moanings and groanings of others. Unhappiness sprouts from the seeds of malcontent. One rotting soul spoils many spirits. Sick with an illness great portions of society either don't believe exists or refuse to comprehend the severity of incapacitation, we can get lots of negativity shooting our way. Doubt, criticism, dismissal, or worse, speculations of insanity. After listening to this long enough one can become horribly sucked in, believing the hype, angry at the accusations or deflated and defensive. I know it takes very little before I willingly hold out my hand and allow myself to be led down the path of anxiety and depression. Sometimes I can get myself there all on my own!

But lately I've been ignoring all that crap. Just don't have the time to indulge myself in one more round of woe is me. When the wah wah whas of life come at me I just turn around and walk away. If my brain decides to wrap itself around how awful everything is and I find myself stewing over the lack of a remedy I go do something else, anything else, to distract myself from that nasty point of view. This week alone I cleaned out four kitchen cupboards, organized and updated my address book and actually had dinner on the table more days than not. All in the name of redirecting my thinking! And when it comes from an outside source, an agitator sitting on my shoulder chattering in my ear planting seeds of discord and kvetching about how awful life is, I brush them off and squash their nasty oozing infectiousness. Misery loves company and I am quite content to send them on their way to go find other company.

Thanks for joining,
Leah

I Cycle, So What?

Up and down. Flip flop. Zero to 60. Whatever you want to call it, I will announce to the world in a loud clear voice I am not the same woman every day. Or at any given time during the same day. It's often maddening, for I would much prefer to be stable and happy all the time. Who wouldn't? Alas, that is just not the way it is, though. Once I got to thinking about it I realized maybe, just maybe, this is not such a bad thing. Because quite frankly everything in this world cycles. The earth cycles around the sun giving us day and night, months and seasons. The moon cycles from round to a sliver and its gravitational pull cycles the tide from high to low. Humans cycle their life around these forces large enough to insert their power over our world. Hell even the washing machine cycles from swish to spin.

Popular opinion of the day strives to override the incessant madness from all this cycling. Go to bed at the same time each night. Wake up at the same time each morning. Eat five small meals a day to keep that blood sugar from crashing up and down. Eliminate the cycling and exist at an even keel. Allow the chaos of change to ensue all around while tucked in a ball of stable, expected living. Good advice, don't get me wrong, but God I am bored already! Yes these things may be beneficial but what about joy? Spontaneity? Excitement at the unknown? Passion? Being a little bad once in a while and breaking the rules? I am beginning to believe these are far more important than given credit for.

Were we supposed to give all those things up because we got sick? I sure did. The unexpected kicked me up one side the street and down the other. I couldn't adapt. There was no roll with the punches or go with the flow for this girl. Spontaneity? Ha! Just the word alone made me hurt. I didn't have joy and the only passion I felt was anger at my illness. But I wasn't sticking to a schedule either. So I flogged myself for years because I believed keeping carefully constructed order was the key to Fibromyalgia management. It didn't work. For the life of me I cannot mush my zest for surviving life into an expected routine. I don't have the discipline or inclination. Some people do, but not me. Finally a month before my 36th birthday I have gleaned enough wisdom, and hindsight, to realizing despite all this cycling I am making progress. Getting the Fibro beast managed. Making my life liveable again. So what if some days I wake up and run a mile and other days I can barely get myself from bed to couch. Life is a cycle. Like everything else. A cycle.

Thanks for joining,

Leah 

A Human Pin Cushion

After the doctor appointment when I was told to "figure out how to get myself better" I decided I had nothing to lose and was going to try acupuncture. It helped me years before with migraines following a car accident. So I found someone who offered a reduced rate through my insurance and set up an appointment. I was a hot mess in those days. Like a really hot mess. Running my requisite ten minutes late I was thrilled to find a parking spot right across the street, no easy feat in the crowded bay area. Shuffling in to said appointment swaddled in sweats and slippers, hair in a bun with no makeup on, I looked about as good as I ever did those days. The office was serene and peaceful. The acupuncturist pleasant, her eyes dancing with light. She greeted me warmly and quizzed me on the state of my health. I laid down and she probed her thin, wand-like fingers over my body, immediately zeroing in on all my "hot spots" of pain and tension. And then she went to work. Poking needles in my ears, feet, shoulders, back, legs, arms, neck, head, you name it, I was a human pin cushion! She left me for a good 30 minutes to marinate in that state. When she came back in she flipped me over and did the same thing on the front of my body. Each needle poke was profound. As they probed and slipped into every painful, tension filled, toxic oozing bundle in my body I felt things bound so tight for so long start to release.

At one point during this trance like doze I heard a car alarm wailing repetitively outside and thought to myself, That kinda sounds like my car, but ignored the hunch because the 20 needles in my body certainly took precedent at the moment. What was I gonna do, pop up and race outside half dressed, pins protruding from my body like some voodoo doll gone wrong? When she came back it was to remove the needles and give me an intense massage, pulling tension and stress out of my now loosened up bundles of nerves. I left feeling amazing, better than I had in years. But as I walked up and down the street I could not find my car. Clicking my key fob I did not hear my horn, and it slowly dawned on me maybe it was indeed my car wailing the alarm while I was passed out in pin cushion heaven. I called the police station and was informed I'd parked blocking the driveway of an apartment complex and was towed. I did what? Talk about Fibro fog! I could have swore that was a parking space, not a driveway. No wonder I found parking so easily. I had to walk to the tow place and pay a kings ransom to get my car back. Oh not good!

I kept seeing the acupuncturist, each appointment walking in feeling like I had been smacked around in a boxing ring and leaving feeling partially human. This woman was amazing, and as we got to know each other she dared to venture places she had never gone with any other Fibromyalgia patient. One afternoon she tapped into a "cord" that started in my upper right neck, through my shoulder blade, snaked diagonally across my mid-back and down into bad sciatica pain on my lower left side. As she popped in the needles like a trail of bread crumbs following this cord of tension I could barely take in a shallow breath, the pain and constriction went so deep. But after a half hour of shallow breathing it turned into full, deep breaths as the cord slowly began to relax. I felt amazing! That was a big turning point in my recovery. 

But certainly the most far out experience happened one afternoon when I struggled in through quicksand, my female cycle leveling me to the ground like it always did. I complained about my adrenals. They felt so slow, sluggish, blocked. She probed her fingers around the inner part of my knee and popped a needle into my adrenal zone. A flaming ball of fire shot up my leg to my hip, back down and out my toes! My leg involuntarily kicked her. She looked at me with wide eyes and told me she felt the electricity shoot through the needle, something which never happened to her before. "Told you my adrenals were blocked," I said. That was a huge turning point for my health. She helped me so incredibly much. I walked into her office that first day a completely different person than I was when we moved to Arizona a year later. I've been to a few other acupuncturists since then and have been sorely disappointed, didn't even bother going back, actually. Once you have had the best its hard to settle for less. God guided me to this amazing woman at the distinct time in my life when I needed her touch and healing hands the most. I will forever be grateful. She helped me recover in ways I never even knew were possible. 

Thanks for joining,

Leah  

This blog was originally published on 9/17/10. Still miss her and have never found anyone like her. If you live in the San Francisco Bay Area her name is Brielle Kelly. She is sure worth a visit!

Family Put The Y In Dysfunction

I don't use this blog to bitch about my family. They are good people for the most part. Human and mistake-making, flawed as we all are, but certainly not malicious. However, on Monday I was grossly maligned. And boy do I have something to say about it! It wasn't my blood, it was my husbands, but that does little to erase the sting. See apparently his sister feels sorry for him, saddled with a wife who is sick and all. From the way I am treated I kind of already knew that. But it goes much further than this. Somehow in her delusion she's become convinced of a concept so outlandish one couldn't help but dismiss it as, well, simply crazy. So here it is. Her theory states I "concealed" my illness when we got married, therefore "tricking" my husband into a fraudulent marriage he is now "stuck" in. Once this gross assumption came out in the open oh ya betcha I blew. Smoke billowing out my ears like a choo-choo train smokestack. I felt weird, oddly judged. It quickly grew into disbelief and then outright anger. Slowly it dawned on me she thought I was a liar, a swindler, the kind of woman who "traps" a man. What kind of man is this who is "trapped" in my web? Certainly not the one I am married to, he stands up for himself and what he believes in. Hard to imagine he came from the same people she does.

Do you think my sister-in-law is on the hunt for a new wife for her brother? I sure do! I have become quite a liability, extremely expensive and have not fulfilled the one purpose of my entire existence, popping out babies. So she wants to discard me, throw me away because I have outlived my usefulness. And do it all by concocting a fanciful tale which allows her to remain conceptually Catholic, but with the added benefit of effectively exiling me from her family by tracing my poor health all the way back to the beginning of our marriage. By believing I swindled her family and "trapped" her brother, the entire existence of our union would be nullified. This is the manipulation of religion at its ugliest. Not to mention she is just plain wrong. I got married in 2001 but didn't get sick until 2005. I guess that was a pretty effective concealment. Even I didn't know I was sick for four whole years!

After I stopped smarting from the colossal smack across the face I realized this really was quite a creative point of view. And severely and sadly fallacious, nuts and just plain stark raving mad. Unfortunately intellectualizing and rationalizing this whole malady in my mind did little to heal my heart from the deep wound taking over any love, fondness or respect I once possessed for my husband's relation. I know I am not alone here. Sick people are inconvenient. Demanding. Messy. We require a lot. Force those around us to readjust their expectations in many personal and individual facets. But she is an idiot. Threw the baby out with the bathwater because now her brother wants nothing to do with her. Ever. After leaning on some very supportive shoulders I am getting a grip. A flare too, but I kinda knew that was par for the course. Being judged sucks. So do false accusations, blatant lies and complete disregard because let's face it, sick is just not popular. Continuing to fight for what is good and right I am putting this ridiculous farce up on the shelf and walking away. I have too much to do and many important things to accomplish. And I ain't givin' her one more second of my thought. Haven't I said it before the best revenge is a life well lived? Well I am gonna go live it.

Thanks for joining,

Leah