Thursday, August 11, 2016

Fear of Forty

Last week I officially crested the top of that middle-age hill and am now on the other side. The stress and anxiety I felt during the last weeks of my 30's had me tied up in knots. Turning 40 was such a daunting prospect, especially considering where my life's at, that all I wanted to do was cry. And a few times I did. Like the date on my birth certificate swirled up all the anger and frustration over how little control I have over my life. Then it happened. I turned 40.

Now I'm laughing, because turning 40 is so much worse than being 40! 40 is, actually, glorious. Like the date on my birth certificate allowed me to accept everything about my life, and stop being mad at it. It helps immensely that I'm now getting a string of days between flares, and the flare that just ended yesterday didn't present itself with its usual buckets of anger. Sure I zoned out on yet one more TV series as I distracted my awakening brain with epic amounts of Scorpion Solitaire. What else is a person supposed to do when they're too fatigued to function? But I didn't get mad about the fact that three days of my life are just...gone. 

I just was. Where did this acceptance come from? Where did the anger that's consumed me for months just up and go? My husband reminded me this is how it happens, how I slowly start to stabilize and regain my footing. Funny, because I forgot. I didn't remember what it was like to feel a positive emotion, let alone not dissolve into puddles of anger anytime I felt anything. Whatever this is inside me they call fibro, it's a Beast. And it took the Beast releasing a little of its stronghold for me to remember how complex, dark, and all-consuming the Beast truly is. 

And also for me to remember what a blessed gift acceptance is. For if I accept my reality and work with it, not rail against it, I actually make progress. Eventually that progress is measurable, and I can look behind me and see some distance between me and the Beast's prison. Don't get me wrong, the Beast is still walking beside me, trying to take a swipe out of me anytime it feels like it, but I no longer live in its world. The Beast is living in mine. 

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Saturday, July 30, 2016

A Different Me

This week the flare hit so hard I didn't know what was happening to me. All I could feel was more anguish and desolation than I could bear. The why's of life started swirling around my mind again, their utter uselessness distracting me with the unfairness of it all. I seethed hatred and anger at my life, the consequences of my existence, and mostly the prison my health has left me in. That was Monday and Tuesday. Miraculously on Tuesday night I slept, which was but a pipe dream the two nights before. On Wednesday I woke up and felt, dare I say it...human? Every inch of my body didn't hurt and I didn't want to hurl myself off the nearest bridge. Victory!

That's when I realized I'm getting better. See that flare state I just described above was my continuous reality for months...and months...and months. I've known for a few weeks now I was stabilizing, that all my juicing and resting and exercising was starting to right the broken-down vessel that is my ship. But I didn't realize how much I'd improved until I was thrust back into the netherworld of constant and pervasive fibromyalgia. 

So slowly I turn my sights forward. Gently I can start to reclaim the small parts of myself I had to bury deep inside to survive my last relapse. But my natural tendency is to race full-speed ahead to replace everything I lost. Quickly, like the less time my life is missing from my life, the more I can deny it was ever gone. But I built my house on sand before. Sure I may have physically managed my fibromyalgia, but inside I was still broken and flogging myself for allowing such a predicament in the first place. I was in so much emotional pain when I embarked on my fitness journey in 2013, all I could do was shove it all aside, plaster a smile on my face, and pretend it was real.

Somehow I have to figure out a way to do better this time. A way to stop pretending and make it real. Lasting and authentic. I've been given an 86th chance. So many patients never figure out a way to improve their symptoms so they can improve their lives. I have. But my greed and impatience in wanting my "healthy" life back fooled me into believing I could just push my way into it. I can't. I'm a different me, something I've accepted in the past but its never really stuck. But it's really about time it stuck.

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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.

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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.

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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.

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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?

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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...

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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.

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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.

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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.

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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.

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Wednesday, January 13, 2016

Incurable Fog

One day while driving down the street I forgot where I was. Mind you I just left Target and was headed toward home so had certainly been there before, but in that instant I couldn't have told you where I was on the planet if my life depended on it. I had to pull over and cry for a while, gnashing my teeth and pulling my hair over the fact that I was thirty years old and becoming so sick with something so unfixable, I was literally losing my mind. Flash forward a few years to when I had settled into the reality of living with fibromyalgia. Working retail was a painful necessity that was quickly running its course, so I set about trying to figure what on earth to do to earn a living. Naturally, this required me to take a Spanish course at the local community college. Not because I wanted to earn money off my non-existent Spanish 1 skills, but because I desperately needed to know if my brain was capable of learning and retaining new information, and I took French in high school. 

I worked really hard for that A. I'd get up at 7 AM to study, regardless of how poor my sleep quality was the night before, determined to prove I was still a viable human specimen. All that learning made interesting things start happening to me, like I could listen to music again and started to remember why I walked into a room. It was an incredibly liberating experience. I'd far surpassed the "no treatment no cure" diagnosis I was given in 2006, but never expected to get my brain back. In hindsight this was like a cruel teaser. Because little did I know, I was about to lose it again. 

By the time Spanish 2 rolled around the following semester, I was a double stroke survivor. I attended one session and promptly dropped the class, considering my brain was such mush I couldn't even make my mouth say ¡Hola! I even tried Conversational Spanish the semester after that but was still too screwed up. Getting my brain back after my strokes took a lot of time to heal and, once again, demanding an excessive amount of mental prowess from myself in order to write my book. But imagine how differently the next six years would've gone if I hadn't succeeded in my little Spanish 1 experiment. Perhaps knowing I could take a perceived limitation and put in enough work to triumph over my tribulations gave me the will to keep going, even when everything was at its worst? All I know is I was told to accept my illness, so I decided to challenge it. That attitude has gotten me into plenty of trouble over the years. I'm always pushing myself and overdoing it and crashing and burning. But I've also come leaps and bounds from that poor sick girl in 2006 who was told she was never going to get better. While I may not be "better," through one challenge at a time, my life certainly is.  

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Friday, January 8, 2016

Reboot Pain

Man do I hurt. I haven't been exercising and it's really starting to take a toll, proving to me once again that moving my body is the best pain pill I've found. As my immune system tanked, so did my ability to engage in cardiovascular activities. When I was in the worst of that two-month-long monster flare, my mile-and-a-half morning walk with my dogs turned into a pathetic shuffle around the block. Coupled with the fact that the gym hasn't seen my sorry ass since November, it's no wonder I freaked out and quit my job. Since I'm still knee deep in survival mode, I'm not even really doing yoga. It's all I can do to fulfill the completion of my obligation at work, so I've been put on hold. And man do I hurt. 

Not to mention I've gained ten pounds back. That alone would seemingly send me running to the weight room to bicep curl myself back into my former shape. But I'm not. Then I finally realized I'm so darn terrified of getting that sick again, I'm babying myself. What a delicate balance, this living with chronic illness thing. I have to challenge myself just enough to slowly move my life back toward health, but too much "challenge" sends me flying down the tunnel of unending sickness. For flippin' reals, yo?

So I'm putting down my computer and doing my Namaste Yoga DVD. It's gentle, yet very effective, but given my pain-seeped state is going to hurt like hell. Tomorrow it will hurt a little less, and in the next couple weeks I will hopefully be geared up to go slap around some iron with a bunch of over-inflated muscle heads. It took me two years of yoga to even get back to the gym, and two years of intense cardio weightlifting to get to where I was, but the benefit of having done all that work is a relatively quick recovery. If I start now, don't overdo it, and for the love of all things holy, can somehow avoid another monster flare.

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