Monday, June 27, 2016

The Perspective of Hope

I know a woman whose fourteen-year-old son is dying of cancer. He was diagnosed at age eleven and has fought an insane battle, but isn't winning the final round. Of course it goes without saying that the impact on the entire family has been utterly devastating. His mother is a gifted writer who provides incredible insight into the reality of their nightmare, and she recently wrote a post that utterly moved me. It was about the changing stages of hope. Four of them, to be precise, coinciding with the advancement of her son's cancer. It started with the natural hope that a person so young would beat the disease and sail into adulthood to live a full and rewarding life. But by the time she reached the fourth stage, it was all about hope for courage. More precisely, the courage to watch her child die.

Needless to say I was incredibly humbled. And ashamed. See the last six months have been living hell for me. I got really sick again and had to quit my job. I didn't realize how sick I actually was, however, until I quit that job and tried to resume my normal housewifely duties. That's when I fell flat on my face. I went through my own grieving process, which mostly consisted of anger and hating myself for being so sick it totally screwed up my life. When I was at my worst I even prayed for my own death, and raged at God for sparing my life when I had those two strokes six years ago. It would have been such a natural way to go, and would have saved me years of suffering...

I bet my friend's son would rather live every day of his life as a double-stroke, four-pancreas-attack, CFS/ME, and fibromyalgia survivor than die in his early teens of cancer. While I don't subscribe to the belief that someone else's problems invalidate mine, reading his mom's post was an incredible dose of perspective. I've been given the gift of life. A sick life, a life with a lot of concessions and heartache and sacrifices and surprises. A misunderstood life outsiders judge very harshly. And a life that really flippin' hurts. But the thing about life is it's not final. It's fluid and can change. If observing this family's experience has taught me anything, it's what a fool I was to wish away my life. For no matter what depths of despair I may sink to, there are probably quite a few people out there who would gladly take my living hell.

Thanks for joining,
Leah 

Tuesday, June 21, 2016

The Luxury of Sick

I've spent the last two week laying around doing nothing. I shouldn't consider it nothing, considering I'm desperately trying to rebuild my health. But instead of saying, "I've spent the last two weeks laying around healing," I fault myself for such a monumental lack of productivity. I feel guilty for not doing the laundry or putting on makeup or going to the grocery store-- things a normal woman my age should do as an afterthought in her thriving, busy life. Yet when I do venture into the land of normal, those simple activities comprise my entire day and usurp all my energy. As I watch my muscles turn to mush and tummy fat muffin-top over my jeans, I wonder if I'll ever be able to return to the gym. And for the love of all things holy, I pray I'll someday gain enough confidence to even glance at the book I bothered to write, let alone try and sell it.

Rebuilding from the splatter of hitting bottom is hard. It wasn't until I accepted, again, that this illness is in control right now, and stopped flipping out about how bad it sucks, that I was even able to stop my decline. It's a daily battle, to be kind to myself, to forgive myself for being sick, to accept the limitations placed on my life. And to remember I've been far worse off before, and it's gonna take some time to improve, but I will eventually get my fibromyalgia managed again. I just don't know when.

Patience is a wicked virtue. Not one I was given in my basket of traits, via either nature or nurture. I'm a driven, competitive, type-A, bossy achiever. When life pushes me, I push back harder. But this does not work with fibromyalgia. I can't "mind over matter" or "action breeds progress" my way out of this one, and Lord knows I've tried! I do know of people who have managed to find peace and happiness while so sick they can barely function. I, my friends, am not one of them. I've tried to be. At times I have been. Right now I'm actually succeeding. But once the pain lifts, and the simple act of showering doesn't wipe me out for three hours, or I wake up with a speck of hope or optimism in my heart, I start racing to the finish line. Well not this time. I'm working hard for every ounce of health I can find, and unwilling to give it away because I want more. No, this time I'm building myself up slowly, gently, generously. I'm respecting where I am, where I've been, and where I want to go. And resting firm in the knowledge that I only begin to heal after I give myself the luxury of being sick.

Thanks for joining,
Leah

Friday, June 10, 2016

Do Cocoons Hurt?

I always assumed the process of turning from a caterpillar into a butterfly wasn't a painful one. Sure, it seemed like a lot of work to spin that silken cocoon to wrap up in, and getting out seemed a bit tricky, but I never gave much thought to what actually happens inside there. I guess I thought it was a womb-like transformation-- where awareness doesn't exist and growth just happens. Turns out I was wrong. Inside the chrysalis the caterpillar digests itself by releasing enzymes to dissolve its own tissues. Then a group of surviving cells rearrange into a butterfly. Ouch. As a person whose own pancreas has tried to digest itself four times (pancreatitis), I only pray some opiates are mixed in with those enzymes to dull the poor caterpillar's agony.

Right now I'm picking myself up from my biggest fall in five years. It's been three months since I last blogged. In that amount of time I've been to hell and am hopefully halfway back again. Again. But every time I break there's a little bit less of me to put back together. My fissures are more obvious, missing pieces more pronounced. And the fresh memory of pain and anguish scathed so deeply into my psyche, I wonder how I was ever able to soothe the raw wounds in the past.

Half my battle was swallowing the bitter pill of acceptance. It took me months to realize I worked too long, my immune system got hit too hard, and I was diving into the unlivable hell of viral CFS/ME again. Too sick to exercise, but still chugging my veggie juice, I finally had to accept that holistic may keep my health from spiraling out, but once my ship has sunk it's not enough to tow me to shore. For that I need a doctor.

After a change in sleep meds and an increase in my anti-viral dose, I can see a fuzzy light at the end of the tunnel. But the woman peering out from inside the cocoon isn't the same woman who went in. And I don't know if I ever will be again. The darkness that filled the void of my soul isn't entirely gone. It almost seems to be a necessary part of me now. A part I want to hang on to. Reminding me of how much it hurts, how bad it can get, and if I am ever lucky enough to stabilize my health ever again, how very much I stand to lose.

Thanks for joining,
Leah           

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