Nothing Safe Left To Say

When I started this blog nobody read it. I wrote for four or five months without giving the link to a single soul. Just publishing it alone was an outrageously ambitious endeavor for a girl as private as I. The thought of anybody actually reading my inner agony sitting here on the world wide web was utterly mortifying. Then I almost died, and the treatment to cure my disease consisted of legalized meth, AKA high-dose Prednisone. So high as a crack-head I set out to let anyone who was interested know just how horrible Fibromyalgia was, a disease I suffered from for the previous five years and was struggling to rebuild my life around. Woo hoo, was I high on the fellowship of social media! The feedback was incredible, and planted an ember of passion in my soul to do something about the horrible reality far too many Fibromyalgia patients endure. By the time I was coming off the dragon-drug six months later people were reading. Clearly I started something, but exactly what I still don't understand. It didn't really matter, however, seeing as the messiest phase of my last ten years was just about to begin.

I had no idea how much damage my brain sustained. Once again looking like a healthy 34 year-old fooled my doctors into believing I survived two fatal strokes with hardly a scratch. Nor did I realize I was on so many medications I literally couldn't see straight. Day after day I got a little better and a little worse. What a devil's dance we tangoed into the starry night, my elusive friends health, sanity and me! Four years later I know I won, but at no point in my journey was that a guarantee. All the while I blogged, or didn't. I engaged in intense levels of personal entanglement with this disease and its online community. My keyboard warrior roared to life and nobody could shut her up! Until a member of my own family began cyber-stalking me, and twisting my words to discredit me. People were still reading, but I no longer knew who they were. All I knew was a fair amount of Fibromyalgia patients hated me for not representing their experience accurately. Eventually all the harassment became so burdensome the flesh and blood of my words began conforming to avoid controversy. The hatred, outrage and anger in my heart swelled, but I didn't have anywhere to put it. So I turned it on myself.   

Despite my stale and tired words people are still reading. Is saying thank you a big enough gesture, knowing I wouldn't have kept going if that hit counter stopped spinning? My comfort with revealing myself certainly reached its peak during my steroid days. Since then the panic in my heart surges a little more each time I think of how much of myself I left sloppily laying around this place called cyberspace. Once again another crucible envelops me. I simply cannot move forward in my life and continue to spew safety. The facade is pointless. Fibromyalgia is raw, awful, fucked up and merciless. While caught in its clutches I have done awful things and behaved in absurd ways. Recognizing that reality doesn't mean there isn't hope, a better tomorrow or a way to enjoy living again. If I'm going to continue to write this blog I must embrace my heartache, let it go, and speak the words my heart recognizes as truth. Those words are far from safe.

Thanks for joining,

Leah    

Searching My Soul

I sit here mystified and bewildered, unsure how to proceed. Thoughts of obligations, responsibilities, ambitions and dreams whirl around in my head in a constant 24-hour cycle. There is no break, no moment of peace, regardless of how badly I need certainty. Trying to make sense of my journey only makes me crazy and panicked. Attempts to manipulate my future leave me feeling raw and exposed. For so long my body hurt so bad it was all I could feel, think, see and do. That pain consumed me, invaded my heart and distorted my mind. I didn't think it would ever leave, to the point that I forgot who I was because that pain was all I could be. That pain became me. Something kept me going, but I don't know what. If I could bottle it and sell it I would gladly laugh my way to the bank to cash my millions. How does a person keep going with so much torment and adversity?

What happened six months ago that changed everything? I hit the floor of a glass bottom boat hard, and stared at the churning abyss waiting to suck me deeper, to claim my life. I knew if I fell any further there was no getting up again. Suddenly, the girl who thought she lost so much there wasn't anything left to lose, realized life can still get worse. It was the moment all my hardship prepared me for, I suppose. Staring my demise in the face forced me to take my eyes off the end and believe things can be different, but only if I really believe. The kernel of intention bloomed in the face of no other option, and I set to work.

Over the last six months everything changed. The biggest surprise of all is discovering I'm still here to rediscover. I thought life beat the passion out of me, like a snarling rabid fight dog who no longer knows how to play. Convinced I would spend the rest of my days as a vague shadow of the woman I was meant to be, I instead find myself actually living again. Smiling, crying, laughing and playing. Believing. And yes, intently searching. 

Thanks for joining,

Leah    

Survival Is Mine

Today I rejoice, because one of the hardest trials of my life is behind me, and I survived. It was hit or miss for a while. The motivated and unblemished 2014 I was certain awaited the other side of January 1st didn't quite offer me the clean slate I hoped for. Instead, while I was desperately trying to move my life forward, exhaustive circumstances kept slapping me around. How many times can a person get knocked down before realizing standing up is sometimes just too hard? I guess I don't know how to not fight for my own survival, though. I've been doing it too long to stop now, for crying out loud! So I kept going...

At some point during the last few weeks my epic amount of hard work and determination to achieve a better life started paying off in spades. It wasn't something I even realized was happening until there was enough progress to look back and see it. In that instant of awareness I realized the greatest tool I possess is my brain. After all, it was my brain urging me to dodge negativity like a speeding bullet, my brain forcing me to exercise when I woke up feeling like half a human, and again my brain making me get my ass off the couch and stick vegetables down my juicer so I could get all that nutrition down my throat and boost my horribly depressed immune system. Thankfully my brain recently had a breakthrough I've been desperate for, allowing me to now go to bed at 2am, fall asleep like a normal human and wake up at 10am ready to have a day. Is this what it feels like to have some control over ones own circumstances? It had been so long I forgot.

I realized if I hadn't changed my attitude I would still be on the endless victim Ferris wheel wondering why my life was so hard. Everything I hold near and dear was on the brink of collapse. My family was about to topple head first into the raging sea of chaos. Had I continued to believe what I possessed at that moment was as good as it gets and all I was entitled to, we would have. Coming out of the abyss scared me silly, because I was able to look back on my life and see just how far into survival mode I sunk. There is so much work to repair my life into something worth living again. Survival mode is no way to survive, yet the horrible reality far too many chronic illness patients simmer in year after year with no end in sight. Hocus pocus, mysticism or magic potions didn't get me here. Looking under every rock for the elusive concept of health, and believing it could be mine, well that was the first step to living again.

Thanks for joining,

Leah         

The Conundrum Of Good Intention

Last night I was hell bent and determined to get to bed before 2AM. Although it's not even Valentine's day yet, Phoenix is already warming up. This winter had me on a luxurious "sleep until 11AM and still walk or run with the dogs five days a week" schedule. It's been stressing me out horribly, to know if I want to keep up the exercise I have to get my routine turned around, or come April's 100 degree heat all my progress will melt away into utter oblivion. Of course good intention always has to marinade for a while with me, before motivation to change my evil ways finally sets in. In other words, I'm remarkably skilled at procrastinating until the very last minute that I am staring failure in the face. That's often, not always, but often when I will get my act together. So of course I try to go to bed early last night so I can get up before noon and exercise before it's too hot and...can't sleep.

By 3:30AM I gave up and started writing this blog, because I realized something profound. About a month ago I began doing back twists and side-bends in addition to my yoga routine. A week or so later I started getting all mad and bent out of shape over everything in the entire world, and I stayed that way for two miserable weeks. About a week into that two week rage consumption, I made the mistake of complaining to my husband about my lack of upper body strength. Well, let me say it loudly, Anger+Complaining=Be Ready To Get Advice! I got his opinion in the form of a convincing lecture, where he challenged me to not rely on the neck/shoulder problem excuse I always use to keep from doing push-ups, and just give it a try and see what happened. So obviously modified to a standing position, I did. Low and behold, my neck and shoulder are fine! But then last week happened. I broke out in horrible rash-hives all over my face, felt the painfully familiar flu-like symptoms invade my body, and had such a catastrophic meltdown over the state of my angst-filled misery, it's taken me a week just to catch my breath. Exactly the type of stuff that happened when I first started doing yoga, and when I first started running. 

So what did I go and do today? More back twists and standing push-ups. Is this why I can't sleep tonight, the horrible rear of another Fibro-flare? The rash and boils on my face are finally calming down. I was feeling rather optimistic and positive, is that going next? And that's when the something profound hit me. Healthy people don't have to make this choice. They can start exercising and not release toxic levels of some unidentified disease into their system that consumes months of their lives. At most they get sore, tired, or won't feel all that great for a few days. I'm certainly not saying it's easy for everyone to just get in shape, but come on now. What a completely ridiculous price to have to pay. 

Thanks for joining,

Leah      

What Is, Is, Remember?

For a long four months things seemed to be getting better. At first it was very hard to halt the chariot of destruction in my life. It took continued re-routing, self pep-talks and blatant scare tactics, but I somehow convinced myself that my reaction to life was my choice. That admission affirmed tantrums, meltdowns and anxiety freak-outs were now obsolete, since to choose to behave that way is simply insane. I reached new levels of health under this fragile new government of myself. Things were going swimmingly over here, in positive attitude land. And then one day the rage came back.

Was it inevitable? Is it impossible to simply do away with the emotional reaction to my life's circumstances by just not thinking about it? It worked for a while, why did it stop? Because I had a health issue rear its ugly head? Or does part of this inter-related world of weird illness encompass the rage? Quite frankly, I could sit here all day and ask chicken or egg questions, and never get an answer. What I really wanted was to get back on track, but I couldn't for the life of me figure out how. I was just too damn mad and out of control, and did I mention mad? 

I was driving in the car with my husband this evening when the realization smacked me across the face. Suddenly I knew what the missing piece was, and it wasn't information, the origin of my emotions or even illness itself. It was acceptance. More to the point, it was accepting reality for reality's sake. What is, is, slapped me silly, and reminded me that if I try to bear the burden of life all on my own little shoulders I won't get out of bed. But if I look around and accept my givens, and do my best with what is, I just might.

Thanks for joining,

Leah       

Raw & Bitter

...with a heaping side of anger. That pretty much describes my state of mind right now. It's amazing, how quickly four months of determined progress got swept away in the blink of an eye. I'm still not quite sure how it happened. It started with a scaly rash on my forehead. Then the boil appeared between my nose and eye. Then another boil. Then an itchy, swollen eyelid, which quickly turned into two lizard-textured ocular skin flaps. Four more massive boils appeared on my face and before I knew it, the texture of my skin rivaled puffy, flaking 40-grit sandpaper. 

This hostile takeover has taken about a week and a half, but have I seen a doctor yet? When I finally relented and called my dermatologist yesterday the receptionist apologized profusely for not being able to squeeze me in immediately, and recommended I go to urgent care. I suppose when I laughed and told her I have chronic illness and don't get too hyper about health problems, it earned me a "difficult patient" mark on my chart. Which I don't really care about, that's how bitter I am. Because I am fully expecting my doctor to tell me there is...nothing wrong with me. Besides looking like the Elephant Man, that is. But the last thing I expect is for my doctor to actually help me, take me seriously or, gasp of all gasps, diagnose me.

Clearly this is an absurd perspective, but my PTSD surrounding anything health or doctor related is so explosive, I'm actually plotting my own demise over here. It's far easier than expecting anything else to change, since it never does. Maybe for a minute, but doesn't it always come back to me being sick and inept and miserable? My husband keeps reminding me this may be something "normal" and if I don't go to the doctor I won't ever know. How many times have I heard that one before? But I now look so deformed I don't have much of an option. And the itching, heavens to Betsy, the itching! My emotions have the stability of the Richter Scale in a 10 point earthquake, and anytime anyone asks me how I am, I start crying and freaking out like humanity is coming to an end. Which I really do feel like it is. So...back to isolation mode I go. I can't deal with this world. I can't deal with people, doctors, illness, concern or medical bills. I can't deal with trying to make people understand my reality. And I most certainly cannot deal with the rash consuming my face! 

Thanks for joining,

Leah