Thursday, March 17, 2016

Horrible, Terrible, No Good, Very Bad

On Monday I took my dogs on a mile-and-a-half walk around the neighborhood. Our morning walk is the final grasp on daily exercise I haven't totally dropped yet, and I rely on it greatly to create normalcy in my life. A life that is by all other accounts, sliding off the rails. Monday's walk itself was uneventfully wonderful, until I stepped off the curb to return home, and rolled my right ankle. Later that day I woefully reported to a friend, "I twisted my ankle and it's mildly swollen and minorly sore--and I really need this to get better by tomorrow." Full of determination to not let yet one more lame-ass problem screw up my life, I iced it, took Advil, and wrapped it up in an Ace bandage. By Wednesday the bruise was still quite pronounced, but my range of motion was pretty much fine. 

But on Wednesday between my flare and med change, and the fact that I hadn't slept for two nights, I woke up crying. Emotionally raw and too sensitive to exist with the world, I proceeded with my obligations as best as I could. Except for on Wednesday when I was returning from my walk, a woman almost ran me over in the crosswalk. Twice. So as I yielded the right-of-way, I yelled at the bitch. Dirty words, you bet your sweet ass. Then the man behind her yelled at me for yelling at her. ARE YOU FLIPPIN' KIDDIN' ME????? So I flipped him off and burst into tears. I wanted to scream, "Do you want to kill me too?" but was too overwhelmed with the complete mess of a human being I had devolved into. So I walked home sobbing, past the mailman I see every day, and proceeded to wail like a baby for the next three hours. I mean, what on earth is this--a world of horrible people I'm just supposed to exist in, and have I become one of them? I finally got a grip and decided I wasn't allowed the luxury of having emotions at this time in my life, and tried my damnedest to make myself numb. What a peach my husband had to come home to last night. 

So today I'm gun-shy about taking the same walk I've taken every day since I bought my Yorkie ten years ago. I don't want to get killed and don't trust my reactions toward the people who may try, or defend those who do. But I'm trying to be the tough chick who pulled herself from the depths by taking no excuses, so on my walk we go. Or more precisely, we try. Because this time, in my paranoid preoccupation with not getting hit by dangerous drivers, I step off the curb and into a pothole--and splay face-first into the middle of the street. My dogs do, too. Luckily my guardian angel preoccupied the greater Los Angeles driving-brigade until I was able to collect myself, my children, my belongings, and hobble over to the curb. And wouldn't you know it, I rolled the other ankle. So here I sit with a bloody knee, ice on my left ankle, scrapes on my elbows, and puppies who are freaked out but fine. Thank God. Wondering why the hell I'm back in 2013 again. I mean, I barely survived it once. What on earth makes anyone think I can survive it again?

Thanks for joining,
Leah        

Thursday, March 10, 2016

The D Word

Doctor. The mere mention of the word sends me into a panic-induced tail spin. Needless to say, I don't have the best track record with doctors. Not only does seeing one usually mean there's yet another thing wrong with me, but they frequently ain't all that nice to a girl with so many unexplainable health problems. See, I'm crazy and they can't help me, so we usually leave it at that. Which is absurdly ridiculous, seeing as crazy people get help all the time. But my unwillingness to concede that the pain in my body is caused by unhappiness in my head, well, that puts me into the category of "unhelp-able crazy," which has left me to figure out how to live with this illness all on my own. Hence the panic-induced tail spin I've adopted as my default whenever the D word is uttered. Did I mention I have a hard time going to the doctor?

But as it goes, yesterday I had to see a new doctor. So with no hope in my heart, no desperation, and asking for very little, I set out to present my long, sordid health history to yet one more medical professional. Because really, I just need to sleep. I can manage the rest of my symptoms with nutrition and exercise, but not if I can't bloody sleep. And since August I've been unable to obtain consistent sleep. 

It's been a while since I dragged out that binder of medical records and combed through it to create a concise medical history, but the day before my appointment that's precisely what I did. It took me eight hours. The surges of emotion I felt reading through every medical report, hospital discharge summary, and diagnostic result made me weep. Once I settled down, I marveled over how on earth I'm still standing, yet alone clinging to hope or faith in the future. At the end of the day I had a one page, concise, non-emotional summary of my myriad diagnoses and treatments for the past 16 years. It was, without a doubt, the best thing I ever could have done.

Because the reaction I got from my new doctor yesterday was staggering. Not only did he tell me how happy he was with my organization when I handed him the paper, he actually asked if he could take a moment to read it, and then proceeded to ask me questions about individual incidents! I almost fell off the exam-room table, thrilled he cared! But what came next shocked me to the core. He finished reading, put the page down with a smile, and explained what I've always known but nobody will admit: when many (not all) doctors hear the words "fibromyalgia" or "chronic fatigue syndrome" from a new patient, they immediately, without further consideration, place that patient into a "category." Never mind that those diagnoses were obtained from said doctor's colleagues, that patient will forever be taken less seriously. But what I did, when I handed him that medical history summary, was cut off any potential attitude at the pass. It told any doctor, unequivocally and without a doubt, what I have experienced is real, I take my health seriously, and am not to be dismissed as a drug-seeker. At that point, I think I did fall off the exam-room table. Clearly, the emotional upheaval and time I invested in creating that document were well worth the reward. Thank the good Lord in heaven.

The rest of the appointment went well. He informed me the meds I'm taking to sleep are not suitable for sleep because they are short-acting. Eureka! Is that why I pop awake after 4 hours with my brain racing? He prescribed me something different and last night I slept. Not like a log, but I was able to fall back asleep after waking up in the wee morning hours to pee, so that's progress. And he wants to hear from me in two days to see how the new meds are working. Is it possible, after all this time, I finally found a doctor who truly cares? And there I go with that hope again...

Thanks for joining,
Leah                    

Thursday, March 3, 2016

The Dichotomy of Me

I did something when I created the protagonist and mentor characters in my novel, something I just gained incredible insight into. I gave you a woman who has triumphed over unfathomable hardship and prevailed, and a girl who thinks the worst is behind her but has no clue how hard life can get. And it was while walking my dogs this morning that I realized this illness is precisely how I was able to accomplish that. See right now I'm the girl--only I'm midway through my journey into "how hard life can get." So how I was able to create a character who's triumphed over jack squat is a total mystery to me, considering I feel as successful as a cyclone in keeping my life together.

That's when I thanked fibro. See those brief moments of triumph I spent years working toward fueled my mentor character into existence. Would I have truly grasped her sacrifice, her dedicated efforts to keep going on her own terms, and her relentless determination to succeed, if I myself hadn't been successful? At least a little bit? With something? On the other hand, without those endless years of unending misery, could I have even remotely captured what it's like to have your life smashed to smithereens over and over and over again? I think not.

I'm laughing my ass off right about now. See, back when I was doing really well--exercising four days a week and sleeping every night--I worried I wasn't going to do my protagonist justice. Life had been a nightmare for a really long while, but that time had passed, thank God, and I was feeling so capable and confident. The better I did, the more of a distant memory my own personal hell became. Of course the infamous fibromyalgia flare-up gave me little tidbits of a reminder every so often. But as we all know, being sick for a few weeks and a few years are completely different states of being.

The silver linings of life are hard to find sometimes. Right now I'm really struggling. But I've been really struggling for so long now, seems like I would just accept it as status quo and move on. Clearly that ain't gonna happen. So onward and forward we go. Still believing one day I will stop being the flippin' protagonist, and once and for all become the woman who has triumphed over unfathomable hardship--and prevailed.

Thanks for joining,
Leah

Tuesday, March 1, 2016

The Drug Dance

I'm stumbling around like a zombie who feels like she's on the verge of getting the flu. That's what I feel like--a sick zombie. Lucky flippin' me. Somehow in the middle of my brain-stem driven level of functioning, I realized I have to sleep or I cannot exist. It's that simple, and that dramatic. Otherwise I feel so awful, riddled with anxiety and such severe pain, all I can do is drink to escape my misery. Needless to say, the after affects of a bottle of Burgundy only further serve to enhance my zombie-like, anxiety-riddled state. So I am now back to drugging myself to sleep. And the dance begins...

To medicate or not to medicate is an overwhelmingly controversial topic. Not enough, and functioning isn't possible. Too much, and functioning isn't possible. Then there's that whole "two strokes as a side-effect of a very popular antidepressant" thing I went through six years ago. So needless to say, I try and medicate as little as humanly possible. But the bottom line is what this illness does to my body makes me want to die, physically and emotionally. I found a way to mitigate such a dire reaction by completely changing my lifestyle. After years of prep work, my fibromyalgia salvation came in the form of green juice and dumbbells.

But today the flu-ish zombie writing this is so many miles away from the capable woman who managed her illness with holistic lifestyle dedication, I'm struggling to figure out where I am. No, I'm nowhere as bad off as I was in 2011--when I was 100 lbs. overweight, in so much pain I couldn't walk down a flight of stairs, and shattered from six months of high-dose prednisone, but I ain't squatting 95 lbs. either. So here I sit at square three or four, admitting I'm sicker than any one thing will fix, and putting my faith back in that tenuous combination of kale juice and pharmaceuticals. All in an attempt to try and find my footing on the path to traversing year eleven with the fibro beast eternally on my back.

Thanks for joining,
Leah

Thursday, February 11, 2016

Where to Begin

I feel like a ship floating out at sea. I exist but don't belong. Nor do I know where I belong, or where on earth I've been. The only thing I know is I've been here before. On a vast, void-less planet lacking shape, clarity, or direction. Land and sea have not been separated yet. Once again I exist, but I don't belong.

Picking up the pieces of my life is proving a much harder task than I thought it would. At first I just thought I needed to sleep for a few weeks and would get right back on track. Then fibromyalgia laughed in my face once again. It's taken me a few weeks to even start sleeping at all. I keep thinking about the woman I was before I went back to work last March. In the skewed hindsight of my memory she was a happy girl who had her health managed and was living a pretty productive life. But knowing me, I was bitching about the same things I'm all bent out of shape about now; I was just in a lot less pain and exercising a lot more.

That's when I was reminded fibromyalgia didn't just make me sick, it made my life sick. And that's what I'm hung up on-- asking myself the "whys" of life. Basically, why the hell is this my life? But experience has taught me "why" questions are a dead-end road. A pointless waste of time. Who cares why? What is, is. Quit trying to figure out why shit went wrong and get busy trying to fix it. But I'm too sick right now to fix much of anything, leaving me to sit here stewing over everything I should have become, but didn't. Which is why I feel like a ship floating out at sea. I don't even see land, let alone know how to reach it.

Thanks for joining,
Leah       

Friday, January 15, 2016

Freedom from Crazy

Yesterday I almost lost my resolve to stop emotionally reacting to my health, circumstances, and life. I had an extremely painful infected cyst on my back I had to have drained by a surgeon. Then I got a cold. And having slacked off so much on my exercise while completing my commitment to gainful employment left my muscles tight, sore, aching, and all together screaming in pain. And have I ever mentioned I suffer from insomnia? Being this sick for this long makes me crazy. I try so hard to not let it, but am really just one woman being swept into a sea of afflictions and am sometimes just not that strong.

And it's okay. I don't have to be strong all the time. In fact, as long as I don't sabotage myself in reaction, the whole experience is really quite human. Quite normal. And quite possibly one of my biggest triggers. See, I spent years furious with myself for getting so bent out of shape over 1) how sick I was and 2) what that sickness was doing to my life. So once again it was my reaction, not my reality, that made things worse. But did I really just expect myself, starting at the age of 28, to gracefully lose my ability to live my life, earn a living, and engage with the world-- with nary a care of concern? Come on now, that's just not the way people are built! Especially me.

I'm in my eleventh year of living with chronic illness and have finally found an acceptance that has evaded me until this point. It's made me realize acceptance is freedom. Freedom from having to be different (not sick), freedom from living up to the expectations of others (give them love and a smile, not a commitment to host Thanksgiving dinner), freedom from believing I could have handled any of the previous ten years any better. And freedom is, most of all, the ability to move forward without giving into the crazy. So I guess, seeing as I wanted to give into my errant emotions but instead redirected my focus on organizing my Tupperware lids, mission accomplished.

Thanks for joining,
Leah