Friday, December 28, 2018

Cleaning Up Sick

I realized the other day that I'm unhappy. Not depressed, miserable, anxiety riddled, or on the verge of a meltdown, but just that general feeling of melancholy that means I spend my days in a touchy state of unhappiness. I may be doing worlds better as far as my illness goes. But the coping mechanisms I relied upon to get through my three-year relapse--basically bourbon, Taco Bell, and watching excessive amounts of television--are still very much ruling my day-to-day existence. My bad habits, and the results of said bad habits, are making me unhappy.

But this is good. Because unhappy I can work with. Unhappy I can do something about. Unhappy doesn't mean I'm descending into a cesspool of misery with no ability to pull myself out. Unhappy isn't me freaking out because I'm too sick to exert a modicum of control over my own existence. And unhappy certainly doesn't indicate I'm so full of anger, it's all I can see. Lord knows I've spent enough of my life in those places. No, unhappy simply means I've grown complacent with my life. And as a result, I'm making some not-so-great choices in order to distract myself.

Now that I recognize it, I suppose it's time to get to work. I've got to clean up the bad habits being so sick for so long left me with. But where to start when, like, everything needs to be fixed? Yes, I may have more energy, but I also have more pain now because I'm doing more. That delicate balance of taking care of me and taking care of life is something I've got to continue to respect if I want to remain on this trajectory...

This new inspiration to get my crap together is most likely inspired by epic amounts of indulgence over the holidays. My answer: on Thursday I walked/ran on the treadmill for 23 minutes. So much exertion caused a vicious stomachache of epic proportions. I had to come home and lay on the floor in writhing pain for a while. Then I was shaky and weak the rest of the afternoon and evening.

Sigh...I forgot how hard this is. Nevertheless I did eat better, stayed off the sauce, and managed to annihilate myself by doing a little exercise. No, the laundry didn't get done. But that's what tomorrow is for, isn't it? Provided I didn't just send myself into an epic flare.

Thanks for joining,

Monday, December 10, 2018

Flare or Flu?

Shortly after Thanksgiving my 101-year-old grandmother choked on a piece of food. She came through surgery okay, but after a week or so there was fluid collecting around her lungs and her heart wasn't functioning properly. Like most do when one happens to be 101, her doctors recommended hospice. I haven't seen her since her 100th birthday party, which pretty much consisted of her sitting in her wheelchair while the rest of us ran around having a blast. So last week I decided to hop on a plane and head to Arizona for a 24-hour whirlwind visit with grandma.

It was a terrifying decision. I had to weigh the potential sabotage of my newly-reclaimed health against not seeing my grandmother one last time. Which one would be easier to live with? After hemming and hawing and considering all the potential outcomes, I decided to go. I also decided I was going for me. Not to meet expectations or because of guilt or out of a sense of obligation, but because I wanted to see my grandmother when she was hopefully still coherent enough to have a conversation with me. I convinced myself if I stayed really mellow and positive the whole time, and expected to get through it without a major backslide, it just might be possible.

By the time I got there grandma had a miraculous turnaround, which isn't anything she hasn't done before. Talk of hospice had gone by the wayside as she was efficiently discharged into a skilled nursing facility as a transitional step before going home. I also remembered, in pretty short order, my family is anything but mellow. Nevertheless, it was a good visit and I'm glad I went.

Unfortunately once I returned home, I only had one day to self-care before my husband's darn company holiday party. The one I was supposed to lose ten pounds in twelve days for, but because my week was spent preparing for, executing, and recovering from this trip instead of going to the gym and obsessing over how much I wasn't eating, it didn't even come close to happening. Whatever.

So yesterday it all caught up with me. As I was sitting here watching football, all I could focus on was the feeling of my symptoms coming to life. Yet I couldn't tell if it was a flare of the flu that was on my horizon. I prayed for a flare. Paralyzed with fear, all I could think about was how many germs I was exposed to while sitting in the hospital for two days, not to mention flying on an airplane. I remembered how I was doing really well in 2015 until I got the flu, and here I am three years later just starting to pick up the pieces. It's one of those things where time is the only way to tell. This morning I woke up feeling achy and sluggish but clearly without the flu. Hallelujah! It's a flare!

It's tough, this living sick thing. As much as I'm determined to put my health first, it's an afterthought to everyone else. For years it was an afterthought to me, and I didn't do very well because of it. But last week gives me hope. I'm caring less about what people expect from me, which while making me quite unpopular (what's new), has helped stabilize my illness exponentially. As a result I'm less emotional and more in control of my life, which has made me want to start living it again. Enough so that I was able to hop on a plane, visit my grandma, come home with a flare, and not experience one bit of resentment. That's progress.

Thanks for joining,

Tuesday, November 27, 2018

Twelve-Day Challenge

I wish I could blame my thirty-five-pound weight gain solely on my sickness. For a long time I was too fatigued to empty the dishwasher and shower within five hours of each other. So naturally anything more aerobic than light stretching went by the wayside. Unfortunately for my sense of scapegoat, I only gained like eight pounds during the first year of my relapse. Although annoying, it seemed like a reasonable consequence to no longer being able to workout.

Then I turned forty. It wasn't so much a birthday. No, the week I hit the big 4-0 was more about damage control. Coincidentally, a friend gave me a bottle of delicious spiced rum as a gift. Well in order to cope with my misery over how sick I was and how bad I was failing at life, I proceeded to turn that one-time gift into a lifestyle. I started drinking way too much and eating bad as well. They seem to go hand in hand with me.

Somewhere along the line I graduated from spiced rum to bourbon. Fast food sneaked its way back into my lexicon. As my body got bigger, my clothes got bigger, and I got madder about the whole thing. Now it's been three years, to the month, since I gave up working out. And I'm like a rapidly expanding blimp over here, as evidenced by the size-large outfit I had to go buy Sunday night for my husband's company holiday party in two weeks. And that's with a girdle.

Yet I'm feeling physically better than I have in years. So my motivation to change is stuck in low-gear. Until Sunday night, that is. I've never accepted my larger size and have totally allowed it to impact my self-esteem. Showing up to the family Thanksgiving gathering was rough because I was ashamed by my appearance. In true paranoid fashion, felt like everyone spent the night whispering about how fat I'd gotten. Like anybody really cares.

So now I'm determined to lose ten pounds before the party next Friday. That gave me twelve days as of yesterday. It's a stupid and unhealthy goal, but I'm going to see what I can do. On Monday I did yoga and went to bed hungry. This morning I lost two ounces under a pound. So today, which was a harrowing and stressful day, I went to the gym when I wanted to go have a drink. And then I didn't even pour a stiff one when I eventually got home. It wasn't as much fun, but I'm teeming for another pound lost tomorrow. With ten days to go...

Thanks for joining,

Saturday, November 24, 2018

A New Respect

In the past I've assumed an absurd amount of culpability for my sickness. Perhaps it started when I was told by doctors that there was nothing wrong with me, as far as my blood was concerned. So I needed to look elsewhere for the source of my extreme muscular pain and unrelenting fatigue. Symptoms so ridiculous, they rendered me unable to work.

Fast forward a decade. I'd changed my diet, was juicing vegetables, and started lifting weights. It was easy to assume the changes I'd made were responsible for the management of my illness. I was even healthy enough to get a part-time job. Then I got the flu and all that progress went away. Watching my life slip out of my hands, the life I'd so painfully fought to rebuild, was an undeniably catastrophic experience. 

After three years of hibernation, I'm starting to exist in the world again. Funny thing is, I have no clue what to attribute my upswing to. I'm eating like crap. I'm drinking way too much bourbon. And while I'm finally physically capable of doing so, of course I'm not exercising nearly enough. The only thing I am doing with a modicum of consistency is drinking fresh vegetable juice, yet even that effort is frequently half-assed. And while my general "health" isn't nearly as good as it was when I was lifting and eating quinoa every day, I feel better than I have in years. My energy is good, insomnia somewhat managed, pain present but not excruciating. And the mental psychosis this illness paralyzes me in is simply nonexistent.

What else can I do but surmise this son of a bitch, whatever it is, is an honest to goodness real disease? Can I finally let myself off the hook for even getting sick in the first place? I tried everything under the sun to get myself managed. Then I burnt out on all things healthy. These days, it's all I can do to take my daily dose of vitamins without gagging as I wash 'em down with Taco Bell. Yet now is when I start feeling better. Like loads better.

So I guess fibromyalgia has, thirteen years in, finally earned my respect. Based on what this last relapse taught me, whether I'm sick or healthy is ultimately out of my control. Something inside of me gets triggered. I can bitch and moan and whine and cry and throw a pity-party tantrum all I want, but it won't change a thing. I can eat vegan or paleo or keto or gluten-free to my heart's content, but diet is only a fraction of what it takes for me to get control of this illness.

This latest experience has shook me. Challenged everything I thought I knew about both my body and this disease. Everything I built my philosophy on about how to succeed while living with chronic illness has been flipped. Because what the last few years taught me is once that switch gets flipped, it takes time and a whole lot of self-care to get this thing settled down.

Thanks for joining,

Saturday, November 17, 2018

She Didn't Come Home

I watched her for the better part of six months. Ever since I saw her in the elevator on that spring day and realized she was pregnant, I started paying attention. She lived on the same floor of my apartment building, two doors down. Yet we never spoke beyond the occasional head bob or mumbled hello. Nevertheless, like a fly on the wall, I watched.

I watched as her tummy grew round and husband doted over her. I listened to her chatter to our neighbors about how excited she was to be having her first child. I watched her family haul the abundance of a baby-shower blessing onto said elevator and up to our third-floor landing. I even rode that elevator to the ground with her, during her first moments of labor, as she fluttered around her husband and best friend in a freak-out of nerve-riddled happiness.

And then everything sat silent. I didn't see a single one of them for weeks. Eventually I saw her husband. He looked pale and withdrawn. A while later I saw a woman entering their apartment. Like a grandmother who'd been dealt a blow she couldn't quite comprehend, her face was forlorn and sad. Clueless as to what happened, but possessing no license to inquire, I was only left to surmise.

Then one day I saw her. My neighbor. She came home, broken and disheveled, without her baby. I went into my apartment and wept. How could I imagine anything but the worst? Yet slowly her world started to come to life again. People were coming and going from her domicile, and a smile seemed to have found her guest's faces.

Eventually the baby came home. He was tiny and beautiful. Ultimately the sound of a wailing child met my ears every time I passed by her threshold. I didn't know what she was dealing with concerning the health of her child. But to me, nobody more important than the stranger down the hall, those cries sounded like the joyful proclamation of faith answered: baby and mama had both come home.

She moved shortly thereafter, or I did, thereby severing my ability to Peeping Tom her life. Yet I still think about her every so often. I wonder how things turned out, how the child is doing. How did the story end for her? Was the trauma of early motherhood a temporary experience, or did it leave her life forever changed?

Thanks for joining, 

Friday, November 9, 2018

My Disabled Dog

In July my family went on vacation. On the first day, my thirteen-year-old Yorkie was injured. More precisely, he stopped walking on his left leg and started hopping around like a little bunny. So we took him to the vet and were informed he most likely had a partially torn knee ligament. Anti-inflammatory meds and rest were prescribed, with the hope that the ligament would resolve itself. It didn't. So on August 24th, he had major reconstructive knee surgery. Turns out in addition to the fully torn ligament, he also had a slew of genetic knee disorders his arthritis and advanced age had exacerbated.

I thought his recovery from that surgery was going to be the end of both of us. My little dog came home pissed. He stood in the barricaded living room, with the cone of shame surrounding his head, barking at me incessantly. I didn't sleep for three nights. On the fourth night I slept a little. Until I got up in the middle of the night, tripped over one of his barricades, and face planted into a wall. That resulted in a black eye that lasted for two weeks.

Nevertheless, his progress progressed and he started slowly but surely walking on his left leg again. Until two days after his first physical therapy session, when he started hopping and refused to put pressure on his left leg in any way, shape, or form.

Back to the surgeon's we went, where she informed us the band replacing his ligament had come loose and the surgery had to be done again. It may have been something the PT did, but there was no way to tell for sure. All I knew was my baby boy had to go through that horrible, exorbitantly expensive surgery again. It was the worst possible outcome I'd have given anything to avoid.

So on October 10th he had surgery #2. Luckily this time his recovery was but a fraction of the nightmare. In fact, he started walking, slow and stable, on his left leg the day after coming home from the hospital. He did that steadily until Monday. That's when, again, the left leg went up and my little bunny started to hop. Again.

I have completely altered my life to accommodate my dog, who is much more of a son, in order to rehab his disability. In an effort to eliminate his jumping, I got rid of my box springs and bed frame and invested in a low platform bed. I also got a huge coffee table that blocks his ability to jump up on the sofa. When we walk, three times a day, he spends three-quarters of it in a stroller. Each night he sleeps barricaded between pillows at my feet in order to prevent him from moving around. He's on more supplements to support his joints and ease his arthritic pain than I've ever taken for mine. There isn't a damn thing more I could have possibly done to ensure these surgeries stuck.

Mentally I'm preparing to have a permanently disabled dog. It's heartbreaking, especially considering how youthful, energetic, and vibrant my puppy still is. He's in perfect health, save for his damn left leg. Putting him through another major surgery, considering the success of the other two, is the last thing I'm willing to consider.

But I'm furious. Outraged. I feel duped. And I can't believe that after all this, my dog doesn't have use of his leg.

Thanks for joining,

Monday, November 5, 2018

First Spark of Life

It was October of 2016. To say I was not doing well would be a monumental understatement. I was, in fact, losing it. Mind, body, and soul, I was sicker than I'd been in years. My CFS/ME was in full charge of my physical capabilities, major depression had taken over my mind, and I'd lost my faith in...everything.

My husband decided we needed to get away. He figured removing me from my environment might allow me to reset, gain some perspective, find some hope, who knows. All we both knew was I was in desperate need of serious help. But for people like me, there isn't any. Not from external forces. Any success I'd ever achieved in managing my chronic health issues came about because I found a resolve inside myself and fought like hell to get there.

We were driving up the 101 Highway toward Cambria. I was looking at Instagram. My husband had tagged me in a post. It was 2 side-by-side images of a former anorexic turned fitness competitor. He was impressed by her shocking transformation. She'd gone from a 68-pound girl who, quite frankly, hurt to look at and turned into to a sculpted and toned woman any chica I knew would've loved to look like. But it was a sentence in her caption that rocked my world:

"Life cannot compromise with death, the same way strength cannot compromise with defeat." That simple statement reminded me that I don't have the luxury of giving up. For while my fight for health may be insurmountable at times, it's still a fight I'm required to win if I want to stay alive.

My husband looked over and tears were streaming down my cheeks. For what he saw that inspired him to tag me was a girl who looked a lot better now than she did before. What I saw was a woman who had healed, in perhaps the most remarkable way imaginable. As a way to combat her eating disorder, she decided to embrace true health in every possible way: mentally, physically, and emotionally.

It'd be so nice to write about how I woke up on that fall day in 2016 and slowly but surely started to climb my way up. No, that took another year. I was severely sick, and it took quite a while longer before my physical illness settled down enough that I could begin to address what had happened to my life. Yet that day gave me the first spark that reminded me overcoming odds is not an impossibility. It's essential, in fact, if I want to continue to do this thing called living.

Thanks for joining,

Monday, October 29, 2018

A Decision to Make

I'm officially reentering society. I've joined two writer's groups and have read my material aloud and received critical feedback from both. I'm attending a conference on Saturday. I'm making commitments and able to see them through, for quite a few weeks now. Somehow, finally, miraculously, I've found myself in a position to start living again.

Yet as I dip my toes back into the living waters of life, I'm scared. I'm scared of who I've become. I'm scared to let people know who I am. I'm scared to tell people about what I've been through. I don't want their judgment, and I don't want their sympathy. And I certainly don't want to have to explain and try to make people understand... 

But I don't really know what I want. Perhaps to pretend the whole mess never happened? To never let anyone see anything past skin-deep? To be taken at face value, like somehow my life could become as superficial as it looks from the outside perspective, if only I don't address my truth?

If only. So I have to decide. Who am I going to present myself to the world as? This was a big issue last time I got healthy enough to work. I learned that when it comes to me and other people, I look too healthy to say I'm sick. Trying to exist in that dichotomy felt like a really big burden was placed on top of an already insurmountable struggle. They would look at me like I was nuts and treat me like I clearly didn't understand what true hardship was. So now I find myself electing to stay silent.

The result: people think I'm a happily kept housewife who grew bored so she decided to write a novel. Nothing could be further from the truth, but I find myself doing zilch to change perceptions. It's too hard to try and convince the world that what I'm dealing with is real. Ironically, that's the entire reason I wrote the book in the first place. And why I continue to write this blog. So yeah, I have a decision to make; how much of myself do I keep to the vest, and how much do I let be known.

Thanks for joining,

Friday, October 19, 2018

If You're Not First, You're Last

I'm stupid competitive. The need to succeed and be the best is deeply ingrained in me. So deep, I have a terrible time accepting when I'm not. Perhaps this is part of the reason this illness is so difficult for me to live with. I know plenty of patients who, by year thirteen, have accepted their limitations and gone on to create meaningful existences where they are reasonably happy. They have filled their lives with loving, supportive people and respect themselves despite the struggles living with chronic illness puts them through. As much as I wish I was one of them, I most decidedly am not.

I seem to exist in one of two states. Either I'm beating this beast into submission, or I'm writhing around on the ground throwing a tantrum because I'm not winning, fibro is. There's no middle ground with me. It's almost like every time I relapse, just like when I got sick in the first place, I take it beyond personally. A shining example of how bad I'm failing. I can spend years twirling in the question vortex of "How could I let this happen?" Which is a really pointless question to ask myself after the fact, when my focus should be on loving myself so I can stand back up as quickly as possible.

No, instead I spend years adulating my anger at what is. Furthermore, it's only when I've stabilized enough to climb about halfway up that I can stop my foolishness. Luckily, for the first time since 2015, I'm here. Stabilized. Starting to live life again. About half as sick half as much as the time as I was those first two years. Finally. For a while there, I didn't know if I'd ever reach this place again. I'd done it before so knew it was possible, but couldn't stop bathing in my fury long enough to have faith.

But this is nothing if not a slow climb. As much as I'd give anything for life to be as simple as a decision for me, it's not. I'm starting to exercise again with a modicum of regularity and it's no longer sending me into major flares, but of course it's not nearly as frequent as I'd like. I'm getting out more and starting to be able to keep commitments again. But it feels small and pathetic considering what I've done in the past and what I aim to do in the future. There's still a tremendous gap between the me I am and the me I need to be.

Yet being able to do a little has calmed me down a lot. While I constantly have to remind myself that there are many other roles to play in life other than winner or loser, I find I'm generally getting a grip. A productive day followed by a down day isn't the worst thing anymore. After all, it's worlds away from being too sick to turn off the TV and get up off the sofa for months on end.

Thanks for joining,

Saturday, October 13, 2018


My vote-by-mail materials arrived the other day for November's election. I know these mid-terms are a huge big deal here in America, but I have beef with voting more than once in any given year. It seems like a frivolous waste of time and money to me, not to mention it kills both civilian enthusiasm and voter turn out. Sigh. Yes, this will be like the third or fourth time in 2018 I've cast a ballot. Is it any wonder I leave it to the last minute? I'm usually up until three o'clock in the morning the night before desperately researching who to vote for, and then I have to actually show up at the polling place to drop off my absentee ballot in person--knowing full well my vote probably won't get counted. Still, it's one of the most important civic duties I've been given as a citizen, so to the best of my ability, I persist.

Last election, on June 5th, I sat at The Cheesecake Factory during happy hour pouring over my vote-by-mail materials. There were so many crazy people running for all sorts of things, I could barely get past the candidate statements. And who on earth am I supposed to want on the school board when I don't even have kids... The more whiskey sours I consumed, the funnier the whole thing became. Especially the guy running for mayor who went off for three paragraphs about how we're being poisoned by the drinking water. Like, this is LA. Who here doesn't drink bottled? 

So I would throw out names as various waiters walked past, asking which they thought sounded better for a particular office. Then we would laugh as they offered silly logic to back up their uninformed suggestions. But I couldn't very well transfer such ignorance onto an actual ballot, so eventually I decided I'd voted for the most important positions to the best of my ability and called it a day. Let me tell you: turning in that ballot, in person, to the polling place after happy hour, well it made me feel like a college kid all over again. Like I was sneaking in a term paper after a very important deadline was due following a really big party...

I really need to not leave this election until the last minute. I need to stop procrastinating and start researching. I need to do my part to help my country out of the partisan divide we're deeply enmeshed in. Because somewhere along the way, we citizens of the United States of America have forgotten how to act like adults. How to compromise. How to work together for the common good. Hell, we can't even agree on what the common good is anymore. Nor can we agree on what constitutes a citizen. It's sad, living in an America I most certainly did not grow up in. I honestly don't know if there's a way out for us, or if we'll eventually erupt into another civil war. But the one thing I can do to speak my voice, promote my values, and hopefully influence positive change, is to vote.

Thanks for joining,

Friday, October 5, 2018

Impossible to Be Good

I really did a number on myself when I went on that extreme diet last year. In hindsight I can see how it combined a significant number of what I consider to be unhealthy practices: restricting entire food groups, sweeping overnight changes that aren't attainable for a lifetime, a plan so consuming I was constantly at its mercy--either because I couldn't eat something, I had to eat something, or I was forced to spend hours preparing food so I could eat something. 

Yup, I was that desperate to feel better and nothing else was working. So I set my sights on nutrition. Cleaning up my diet helped me immensely in the past, and this was a new approach claiming to treat the root cause of my illness. Yet the deeper I got into this eating plan, the less functional of a human being I became. Toward the end I was usually in one of two states. Either I was hungry and weak but not allowed to eat because something I drank needed to digest first. Or I was avoiding the whole thing and eating junk because I couldn't possibly face yet one more bowl of salad. 

It's impossible to know if my pseudo-commitment to veganism did anything for me. I've certainly been off it long enough and haven't experienced a backslide. But maybe it healed something inside of me and I never would have arrived here without it? It'll go down as one of life's little mysteries... The one thing I do know, however, is my present burn-out on all things healthy has me eating like crap. Like I've been to Taco Bell more times than I can count after not having eaten such blatant fast food for at least half-a-decade. Because In-n-Out is obviously not fast food.

So here's the result of my year-long obsession with consuming fruits and vegetables: food has lost its attraction for me. Eating is now a chore. I wish it was something I only had to do when somebody  else was paying for a nice meal at a great restaurant. Otherwise, I'm astoundingly sick and tired of thinking about food. When hunger pains strike, I get irritated. It seems like a waste of time to have to stop what I'm doing, prepare food, eat it, and clean it up. Honestly, I'd rather balance my checkbook. So I'm eating bad, not looking all that great, and can barely muster up the resolve to take my vitamins and juice my vegetables anymore. I'd rather go get a falafel. Or a burrito. Anything I don't have to cook and is a breeze to clean up.

Thanks for joining,

Tuesday, October 2, 2018

Social Media Stalemate

I'm struggling with social media in a major way. I haven't posted on instagram in a month. I never really got my twitter off the ground. And I basically go on facebook once a year around my birthday because for some reason, people still care enough to wish me a happy one. I haven't even been on my facebook page to promote my blog since I started writing again last month. And let's be honest, while not quite social media, I ignored this blog itself for years. It kind of hung around in the background of my life, this thing I was supposed to care about, knew I needed, and took a stab at every once in a while, but couldn't bring myself to utilize regularly.

About the blog, I kinda figured out my hangup. I didn't like my truth. It was ugly living it; the last thing I wanted to do was own it. Publicly. My life was a hot mess. It was easier to melt in on myself than volunteer my way into a position of vulnerability by spewing my crap all over the internet. After all, in the past my words had been used against me. Occasionally I would catch up with an old friend and they'd inform me they still read my blog. I'd look at them in horror and ask why before telling them to stop. These people didn't even have an illness. Why would they want to read my incessant ranting about mine?

I guess the isolation and loneliness became too much to take. Eventually I decided to own my truth, in all its pathetic ugliness, and just start writing again. Like I did in the beginning: to me, for me. With no agenda or design on self-promotion. No pictures to create context or blurbs posted on facebook to draw in hits. I haven't even told my family. No, I just started writing what's inside. Slowly but surely, everything that's been stewing is starting to come out. It's an intense process, my attempt to trust again. To get to know myself and be honest about who I am. To confess my flaws and deficiencies to anyone with a WiFi connection. But the improvements I've experienced over the course of the past month are undeniable, so perhaps there's something to this whole "own your truth" business after all.

But the rest of it, the tweeting and liking and following and tagging, oh goodness it all seems so pointless. I know I'm supposed to want to engage with the world as it happens around me, on these specific platforms. All the kids are doing it. Why should I be allowed to not care that a person I went to high school with, and haven't seen since, went to Greece for six weeks? At the very least, failing to congratulate my aunt on her granddaughter's engagement makes me a pretty apathetic person. And don't even get me started on the political and social meltdown my country is enmeshed in. I should be shouting my two cents from the rooftops. Yet I sit silent, strangely absent, unpolarized by the actions of others because I'm so frustrated by the lack of my own.

Perhaps one day I'll find my enthusiasm or confidence or desire to reconnect with people. To share my experiences or what makes me happy or what pisses me off. But right now I feel like a stranger to myself. I hibernated like a bear for three years. I was hurt and recoiled into a tight little ball of protection and lost a significant amount of myself in the process. I guess I won't find a purpose in my social media, again, until I get to know who I am. Again.

Thanks for joining,

Thursday, September 27, 2018

Motivation Lost and Found

I live in a reclusive little bubble. I have very few friends, don't leave the house very often, and am not all together happy with my quality of life. Frequently my husband is the only person I see or talk to on any given day. Plenty of my seclusion is the result of my health struggles, but I would be remiss to blame it all on sickness. At this point in the game, a fair amount of it is good ol' fashioned habit. Laziness. Lack of motivation. For years I was too sick to get up of the sofa. But my health is stabilizing and my fatigue abating. This puts me in a precarious position. I have to gently dip my toes back in the waters of activity in order to not induce a relapse. But I also have to return to living life. One would think I'd be jumping up and running out the door any chance I get, but I'm not.

Nope. I'm kinda sitting here waiting for some magical spark of motivation to float in through an open window and breathe life into me. I've spent a lot of time thinking about the previous two times I managed to reclaim my life. The first time my motivation came in a pill. I was on high-dose prednisone following my strokes and couldn't sit still. Free of pain and fatigue for the first time in years, and high on having just cheated death, I started promoting my blog on facebook and getting to know a bunch of other fibro patients. People started reading it, formed a community, and I had a purpose. I sprung up out of bed every morning and crusaded all over the internet about how, together, we patients were going to change the stigma of fibromyalgia.

Unfortunately, thankfully, being high doesn't last forever. Once I tapered off that drug I was in hell. My pain and fatigue were worse than ever. I'd gained like 100 pounds. I could hardly walk up the stairs. And psychologically, well, let's just say I was so distraught the whole crusade thing fell apart. It took a few years until I found my second burst of motivation, and that one was induced with fear. Something happened in my personal life that required me to buck the hell up and take charge of my family. I was forced to get it together because my life was on the brink of falling apart. It's amazing how motivating securing your own survival can be.

The result was 2015 me. Working out at the gym, working part-time at a job, believing I owned my health and could have it all. Two measly little flus, back to back, was all it took to wipe out all my progress. Now I sit here three years later halfway between fresh-off-prednisone me and capable-of-engaging-with-the-world me. I desperately want--screw that, I need my motivation to be pure and positive this time. It has to stick. It also needs to happen like yesterday. And it kinda did happen yesterday.

I left my house again. This time it wasn't a lunch date, it was to attend my first writer's group. I've been working on a novel for the last 100 years and finally finished it. The time has come to put myself out there and launch my new career. It's scary. It's intimidating. It's also pointless to have written the darn book if I'm not going to put everything I have into making it a success. So once again I set my alarm and was up and out of the house by 11:30 a.m. This time I even drove forty-five minutes in LA traffic by myself. May not sound like a big deal, but for me it is. While I didn't present my own work this time, simply being around other people who are trying to do what I'm trying to do was exhilarating. I left the meeting feeling like a real, live girl. Today I'm back to being a heap on the sofa, but something inside me has shifted. Perhaps that spark I was looking for floated in through my car door.

Thanks for joining,

Monday, September 24, 2018

Hell Week

Sometimes this illness presents itself in the absolute strangest ways. Take last week for example. I woke up during the wee hours of Monday morning to pee and caught a violent cold shiver on my way back to bed. So I bundled up under my blankets like a mummy and shivered myself back to sleep. Well when I woke up a few hours later, I was drenched in sweat. Like hair plastered to my forehead, sheets soaked, drenched in sweat. I felt sick, but that's kinda my normal state these days so it didn't cause much concern. I dragged my way through the day getting non-physical activities done and somehow, despite feeling pretty awful, kept my mental state steady. 

On Tuesday I woke up still feeling sick: alternating between really hot and freezing cold, achy, lethargic, stomach a mess, bla bla bla... But in addition to feeling sick, there was an extreme pain on the right side of my mid-back, kinda near my ribs. It flared and spasmed at times with such severity not only could I not breathe, but I was forced to cry. I tried massaging it and icing it. I took ibuprofen. I sat in strange and contorted positions trying to relieve the pressure, but for the life of me I couldn't get out of pain. I hurt too bad everywhere else to do yoga; a medieval torture rack sounded more appealing. So I sat there patiently waiting for the flare to subside, knowing once it did I could attack my back with some good ol' fashioned stretching.

On Wednesday I woke up so sick and in so much pain that I lost my shit. I'd tried to keep it together, I really did, but my PTSD started to kick in and I couldn't. If I thought I was crying on Tuesday, Wednesday took it to a whole new level. I spent the majority of the day ranting and raving about the unfairness of life. What had I ever done to deserve unending misery? How was I supposed to survive it? Horrible people have wonderful lives, why can't mine just be normal? And it was while crying this out to dear old mom that a lightbulb went off in my head.

This particular back pain is easily sixteen years old. I had it long before I started feeling the symptoms of CFS and fibro. I remember going to the doctor and being told it was because I was a makeup artist and worked with my right arm extended out in front of me for like forty hours a week. He told me to file a workman's comp claim. I thought he was ridiculous. I was twenty-six years old and had worked in the industry for a year-and-a-half. I hadn't exactly been performing hard physical labor for twenty years under adverse conditions. Clearly my doctor just didn't want to deal with me. So I sucked it up and ignored the pain until a few years later when I started feeling the symptoms of what turned out to be CFS and fibro. I found out that whatever's wrong with my shoulder is connected to whatever's wrong with my neck. Combine that with these chronic pain conditions, and the result was damn near right-arm paralysis.

It took years to get that spot, along with all the other areas on my body where I have a slight inequity fibro lives to exploit, out of pain. Acupuncture and yoga helped, but it wasn't until I started weight lifting that I forgot it even existed. But I'm not exercising regularly right now and am actually in pretty pathetic shape. I've been really down on myself for gaining weight and not looking as good as I did a few years ago. Last Tuesday I was reminded in a brutal and punishing way that exercise, for me, has nothing to do with looking good. It is, quite simply, the only way to feel like my body isn't falling apart.

Wednesday's realization did nothing to improve my Thursday. I believe at one point my husband actually told me I wasn't allowed to cry anymore. And I didn't blame him a bit. How he hadn't walked out the door yet was beyond comprehension. If I'd had any way to get away from me, I woulda flown the coop in a heartbeat. Nevertheless, we somehow made it through my flare. He found the trigger spot under my shoulder blade and pushed on it until I thought my eyes were gonna pop out of my head. I spent hours stretching while we watched TV. Sure, it hurt like hell, but sitting still wasn't any better. Clearly the only way to improve my future is to torture myself now. 

On Sunday I woke up and the first thing I felt wasn't my back. Hallelujah! Yes, it still hurts, but the stretching and massaging and ibuprofen and ice, and in all honesty my flare ending, shifted the pain from agonizing to uncomfortable. So that's that. Another week gone. Another week I won't get back. Another week of my life absorbed by this sickness that doesn't make a damn bit of sense and no one can seem to fix.

Thanks for joining,

Wednesday, September 19, 2018

Just Feed the Dog

Last year, or maybe it was this one, who knows they all kinda blend into the same, my dog got sick. Something was wrong with him. Either his intestines were developing a serious disease, his food was poisoning him, he'd contracted a parasite or infection... We gave him every possible medicine. I changed his food. We even treated our other dog in an attempt to eliminate her carrying something she was transferring back to him, despite her not displaying symptoms herself. Nothing worked. He had me running him out to the bathroom at all hours of the night. He gave me dirty looks every time I put his food down and half the time refused to eat it. Yet he was still my baby dog. Twelve years old, maybe, but he still wanted to play and love and live his life to the fullest.

I had to figure out how to make him better before his intestinal inflammation turned into that aforementioned serious disease. Following my vet's advice, I took both dogs off their commercial diet and started to cook for them. Also, since they were eating chicken and turkey, I switched to beef. Twice a day I warmed up organic ground beef, apple, and spiralized white and sweet potatoes and fed it to my canines. I no longer got dirty looks when I put down that bowl o' food, let me tell you. Mealtime resumed its rightful place as my dogs' favorite time. And low and behold, he got better. My vet diagnosed him with a poultry intolerance and commended my dedication to figuring it out, not just throwing him on a lifetime of medications that don't work all that well to treat his nightmarish symptoms (sound familiar).

Perhaps I mentioned in a previous post that I'd totally burned out on this housewife crap and was no longer cooking for my husband? Needless to say, cooking for the dogs had to go. So I started researching dog food. Good God, ignorance is bliss! Let's just say that the high-priced kibble I'd been investing in, believing I was supporting their long-term health, was full of crap. In fact, all kibble is. Fillers and byproducts and meals that provide very little in the way of actual nutrition. So I kept searching. Sadly, it was nearly impossible to find dog food in any form that wasn't junk. I wound up settling on an extremely expensive New Zealand beef jerky that I mixed with a dehydrated beef and vegetable "powder," that I had to rehydrate with hot water. It was less work than sauteing ground beef and boiling spiralized potatoes every few days, but still too fussy for me. At this point I was so burnt out, I wasn't even cooking for myself anymore. Plus my dogs' enthusiasm was gone. Rehydrated gruel just wasn't as appealing as fresh ground beef. No duh.

After he got inured in July and totally stopped eating his food, I went back to cooking for the dogs. Meanwhile, my poor mother was forced to listen to forty-five-minute daily rants about the utter lack of quality dog food available at an affordable price. Then the whole "legumes can cause canine heart disease" scare broke out. Man, did I get desperate--to stop cooking, researching, and otherwise being a complete freak about what to feed my dogs. Yet I also refused to watch him get sick again. So finally I settled on a frozen raw recipe with beef and vegetables mixed with that New Zealand jerky.

Now this is where my ridiculously long story comes full circle. Because when I found out raw wasn't good for senior dogs, given that they are more susceptible to pathogens, I started lightly steaming the frozen raw food. Now I can't find a cooked food with an adequate amount of quality ingredients to replace it with. So here I sit, taking a break from researching dog food, again, to throw a frustrated fit. I'm right back where I started. Cooking, researching, and otherwise at a total loss about what food to feed my dogs.

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Monday, September 17, 2018

Accepting Sick

Last spring I got sick with a cold that acted more like the flu. While certainly not the sickest I've ever been, I was already struggling to come out of a fibro relapse and it hit me pretty hard. Additionally, it lingered and lingered and lingered until it was nearly summertime. At one point I remember walking around my kitchen forcing myself to do the dishes with every muscle aching, nose running, head throbbing, and lungs hacking. I'd been like this for weeks and was miserable. I wondered if it was ever going to end. I couldn't remember what it was like to feel good and didn't know if I ever would again.

Somewhere between unloading the dishwasher and loading it back up again, an epiphany hit me. I stopped working and just stood there. Stunned. Suddenly my life made all the sense in the world. Of course I wasn't going to feel good again. And for the life of me I couldn't figure out why I expected to? It became clear as day that even after this cold-flu abated, which it undoubtedly would at some point before Labor Day, I was still sick. I was still miserable and in pain and hardly able to function. I was still struggling to come out of a three-year relapse. I was isolated and alone, with no help on the horizon and no end in sight.

Acceptance washed over me in a way it hadn't before. I admitted how sick of feeling awful I was, and how it wasn't fair that everyone else's colds and flus went away and allowed them to return to real life when my chronic illness had been keeping me prisoner for thirteen years. I got mad that I was expected to live in pain and self-subjugation because medicine doesn't truly know what's wrong with me. I became furious over the fact that because medicine doesn't know what's wrong with me, I'm treated like a nut job who just can't figure out how to make life work.

It seemed like an absurd circus I was willfully participating in. So I decided, then and there, standing in front of my dishwasher with a tissue in one hand and the other covering my hacking mouth, that I was done. I refused to participate in the madness any longer. Everyone who didn't feel like I did every damn day could piss off, I was done caring about them more than me. I was done feeling awful and hiding it. I was done putting productivity in front of my ability to reduce my pain and sickness. Yup, in that moment I decided feeling good was my number one priority and everything else could happen second.

My flares changed after that. Instead of lying on the sofa all day feeling awful and getting nothing done, then feeling okay a few days later and racing around to get caught up, only to push myself right back onto that sofa, I stopped the cycle. Slowly I started to feel better from my cold-flu. Man was I behind on life's to-do list! But my refusal to keep myself imprisoned in misery was fresh and strong. So I did a little and rested a lot. Each day I kept at that pace. When I felt bad, I rested. When I felt good I did a little, then rested preemptively. I figured if everyone else gets to not feel horrible every day, the least I deserved was to not make things worse for myself.

Yes I've pushed myself into a few flares since then. Obviously. Whatever I had to do was too important. Until I was there. Then I remembered why I committed to my quality of life first and productivity second. This epiphany has revolutionized my life. Over the last few months my core health has started to stabilize. I'm coming back to life again and slowly getting a handle on my circumstances. And each time I make a decision to put my health first, it becomes easier to do. Although I'm still climbing out of the deep hole of relapse, I'm now able see the tiniest glimmer of light at the very end of the tunnel.

Thanks for joining,

Saturday, September 15, 2018

My Lunch Date

On Thursday an old friend took me out to lunch for my birthday. Now she's a regular person with a regular job so lunch for her is at like noon. This meant I had to be up, showered, dogs walked, makeup on, and generally trying to present myself as a functioning member of society by the time I called Lyft at 11:45 a.m. I'm usually walking my dogs around the block in my sweats at eleven, and that's on a good day when both my insomnia is in check and flare registers on the below-average scale. Otherwise I find myself motivationless and begrudging the monotonous list of duties and chores that lie ahead of me. Yeah, I've been known to drag starting my walk out until well past noon. It makes me wonder how on Earth I used to have a job. It's also one of my greatest hurdles I'm actively working to overcome.

I got to the restaurant nine minutes early. And I can't blame it entirely on my Lyft driver literally being on my street the moment I made my request. I was so paranoid I was going to be late, because I'm so far from functional right now, that I went into hyperdrive the moment my alarm went off. I spent the morning racing around in a shaking rush doing everything in my power to arrive on time. 

Obviously that's not a realistic way to live. But considering this was the third time we rescheduled because I kept cancelling on her, I was hell bent and determined to follow through on my commitment. And I did. Although the methods I employed were hardly a kind way to treat myself, it felt good knowing if push came to shove, I could get myself out of the house before noon. I even did such a good job of appearing somewhat normal, when I got in the car my Lyft driver asked me if I was headed to work.

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Wednesday, September 12, 2018

Bitch Needs Bourbon

That was the text I sent to my husband at 7:28 p.m. last night. Because at that point in time, I really needed a drink. In fact, I knew it was the only way we were going to make it through the evening together. My day had gone from bad to worse and my mental state right along with it. It's awfully strange to know intellectually that everything in the world isn't negative and terrible, yet only be able to experience it that way. Every word out of my mouth was critical and naggy. I was in too much pain to sit. My patience was nonexistent. The need for solitude and distraction was paramount, yet my life isn't built that way. For years I took narcotics but don't anymore. So in order to become somewhat tolerable, I drink.

Thank God for the one-day flare. I'm not saying I'm ready to conquer the world today. But considering I lived in the aforementioned flare-state for about eight months straight, a day of extreme misery isn't all that derailing anymore. Strangely, I'm realizing I can almost consider it a good thing. Yesterday reminded me how far I have come, and how hard I worked to get here. I may spend most of my time bitching about my inadequacies, but if I honestly assess where I was in 2016 and where I am today, well, it's as far apart as night and day. 

Not that I wouldn't have slapped myself silly for having such a positive thought yesterday.

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Tuesday, September 11, 2018

To Do or Not To Do

I didn't realize I woke up in a flare until I tried to pour my coffee from my regular mug into my travel mug and spilled half. It pissed me off so bad, I hurled all the silverware sitting on the counter that the coffee spilled on into the sink. Then I stood there annoyed that something as non-emotional as the success or failure of transferring liquid from one vessel to another elicited so much passion in me. Furthermore, having to grab the sponge from the dishwasher to clean it up, when it would have been so much more convenient if the sponge was already sitting near the sink, seemed like an extra assault on my already taxed capabilities. Groaning, I realized the extreme fatigue I experienced last night, coupled with the boil on my face I woke up with this morning, combined with the screaming hips I tossed and turned to all night, added to my irrational expectation that every effort I put forth flow smoothly or else... Yup, I was in a flare.

Maybe it will only last a day. Perhaps if I take really gentle care of myself today, tomorrow will be filled with sunshine and rainbows. But I have stuff to do today. If I don't, life gets backed up. Then I have to do like 50 things in one day to catch up, which isn't possible for me right now. So the anxiety monster takes over. I'm overcome with how little control I have over myself. The justifications start to form, excuses as to why things are the way they are. But none of it lets me off the hook. 

I get frustrated that I can't keep my commitment to myself to dye my roots and do yoga, let alone give the dog a haircut and juice my veggies. Because if I just did those four simple things, it would be okay. I wouldn't be behind the eight-ball of life. I'd be capable of crossing a few more things off the To Do list that's required to keep me moving forward. Yet quite frankly it's one of those days where taking a shower and emptying the dishwasher, that's pretty much all I got in me.

Once the sum of my energy diminished, I found myself deposited in this weird no-man's land of unthrilling monotony and boring repetition. It feels like domestic servitude. It's hard to find motivation to get up and kick ass every day when I can barely keep up with everyday necessities. Where's the fun? Where's the variety? Where's the endorphins and pheromones and excitement? So today I sit here lamenting how far apart the life I live and life I want to live truly sit. I wonder how many more years of trying to stabilize my health it's going to take until I can start to bridge that divide. Because it's about so much more than a daily To Do list. It's about crossing off accomplishments on the goal list of life.

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Monday, September 10, 2018

Tryin' to Yogacise

My motivation to start exercising again is sorely lacking. I mean I want to be the person who springs out of bed in the morning and hits the gym like it's second nature. I want my pain gone because there simply isn't enough room in my muscles for both fibro and strength. I want those firm arms and flat abs back. I want to do yoga three days a week and workout twice, like I used to when everything was going so good. I desperately want to wave a magic wand and be back to how I was before I fell apart.

But apparently I don't want it all that bad. Because I'm doing very little to make it happen. Maybe six months or so ago I decided gabapentin was the culprit that was stealing my motivation. I'd been on the drug for years, and while my dose was relatively low considering where it'd been in the past, I was still on a fair amount. It was something I had convinced myself I needed to sleep and hadn't stopped to reconsider if it was still necessary. So I weaned myself down, slowly, a step at a time, until I was on one quarter of my previous dose--barely anything at all.

Well if I thought I was taking the drug to sleep I was sorely mistaken. My sleep ease or quality didn't change a bit, but the pain in my hips and low back morphed into a monster I'd forgotten lived inside my body. Suddenly sitting was unbearable, and standing up from the sofa made me scream out in agony. Ice picks stabbed up and down my hamstrings from my booty to my calves. I felt 85. I was stiff and couldn't move. It sucked. And I was no more motivated to start exercising than I was before I reduced the dose. Maybe less so, because I hurt so bad...

So being true in my commitment to torture myself, I decided I needed seven straight days of yoga to fix this disability. Loosen up those tight muscles. Snap me back into the habit. Rediscover those neuropathways that like the agony of exercise. Because on the other side of all that pain sat the absence thereof, if memory served correct. Now I knew full well doing yoga seven times in seven days was going to push me into a flare. But I didn't care. I just wanted to be able to sit, stand, or walk without feeling like my nerves were shooting electrical currents down my legs and out my ten little toes.

Six times in seven days. I was amazed I accomplished that. Unfortunately, however, it was one of those angry flares. The kind that makes me wonder what I'm doing on the planet, taking up so much space and contributing nothing. Makes me question why on earth anyone still loves me, and how I can still love them. Makes me go nuts on Instagram when I start to read the comments section, on any page any topic, wondering why on earth everyone's so awful and stupid and mean. I started retreating down the rabbit hole again... And then it passed.

I'm still averaging yoga about once a week, as I was before my 6-times-in-7-days offensive. The pain in my hips is less, I think because my brain's pain impulses have adjusted to not having medication artificially soothe them. But not much else is different. Meaning I didn't find the key to my missing motivation. This rebuild forms the same basic structure as every other time I've come back from this mysterious ailment they call fibromyalgia: Trial and error. One step forward two steps back. And a whole hell of a lot of torture every inch of the way.

Thanks for joining,

Friday, September 7, 2018

The Missing Ingredients

Ability isn't my biggest hurdle right now. My health is actually holding kind of steady. I'm functioning at about 50% of the capacity of a healthy person. Considering that during the worst of my relapse I was around 20%, things are looking up in that department. My biggest issue isn't my mental state, either. Undoubtedly I suffered from a severe depressive relapse in 2016. While the experience of being haunted by the most damaged parts of my psyche has left me forever altered, as it has every time prior, the acute pain of the condition has vacated my present state. So basically I don't spend every day sobbing for hours on end wishing I wasn't alive. It's a relief I forget to adulate as often as I should.

I don't spend six hours in the kitchen every day any more, either, using my precious energy to facilitate the necessities of life. And while I still do more care-taking than I'd envisioned for my future, my days aren't bogged down with the non-stop frenzy of barely getting everyone else's needs met. Please don't misconstrue, I'm well aware of how fortunate this makes me.

So it would only make sense that I'm taking full advantage of my abatement in suffering. Moving on my life goals like a bitch. Regaining everything I've lost like a conqueror settling a known land. But no. My life is not that linear. Instead I'm floating around in the strangest psychological abyss I can remember. My productivity is shit, and desire to improve it even worse. I could be getting so much more done than I am. But I only got a handle on my flares when I decided to put my health before my output and started listening to my body when it told me to slow down. Which means I sit around a lot investing in the notion that if I do, I can avoid not being able to get out of bed for days. It also means not much gets done because I basically justify everything as not worth relapsing for.

This whole thing is screwing me up royally. My mind NEEDS to do. My body NEEDS to chill. Like every other time I've started to get a handle on this illness, the two parts of me are not lined up. There's no tandem. No coalescence. And it's driving me insane! I should be getting so much more done than I am. I should be respecting my limitations way more than I am. But I don't know when to push and when to pull. So I sit here waiting for that magic day when I'm flooded with my missing ingredients: equal parts motivation and discipline. Sitting. Waiting. And wondering if that day will ever come.

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Wednesday, September 5, 2018

I'm My Last Priority

Admitting how deficient I've become in my blog post yesterday proved amazingly cathartic. It's like putting my business out in the street made me responsible for cleaning it up. I spent the remainder of my day yesterday pondering, without judgment, how I got here: When I quit my job in 2015 I had no clue my chronic fatigue syndrome had been reignited. Assuming I needed a couple months of rest and a hell of a lot of sleep, I set out to make up for my loss in income by becoming a proficient housewife--something I'd never excelled at in my life.

I did it. For a couple years my husband didn't wash a dish or cook a meal. I packed his lunch every night before bed so he could grab-and-go to work in the morning. Everything we ate was clean and made from scratch. I even went so far as to deep clean every inch of my apartment and reorganize every cupboard, closet, and cubbyhole. Like I said, I didn't realize my CFS had been reignited. Until the crippling fatigue kicked me in the ass. Suddenly I was back to making a shower my daily activity. Some nights I was so dizzy and weak I couldn't muster the strength to empty the dishwasher. Still, however, I refused to let him lift a finger. He was working more than double time to cover my lost wages and I figured it was the least I owed him. So I'd sit on the sofa zoning out on TV or cell-phone solitaire until I had just enough energy to get up and get the job done. Sometimes that didn't happen until my insomnia kicked in at one o'clock in the morning.

In a moment of extreme desperation I decided to commit to a nutritional plan that promised to rid me of the viruses that were making me sick. Nothing else was working and I couldn't get the fatigue under wraps. This program was a tricky and complicated protocol I committed to about 60% of the way. But that 60% consumed my life. There were so many requirements! First came the quart of lemon water on an empty stomach first thing in the morning to detox my liver. After about an hour I drank 16 ounces of fresh celery juice to restore the hydrochloric acid in my gut. An hour after that came the all-fruit smoothie full of supplements. Then there was the coffee I was supposed to give up but didn't...

Given my extreme insomnia had me waking up late and all these liquids had to be consumed far enough apart so my body could absorb them individually, I wasn't actually eating anything until like 4 or 5 p.m. Which left me shaky and weak for the majority of my day. I got used to feeling too fatigued to leave the house, even after the CFS started to abate. I could actually get through a yoga session without having to rest halfway through, but mentally didn't recognize the improvement. 

About a year into this program I totally burnt out. I'd become ridiculously obsessed with food and what I could consume when. Like it was pretty much all I though about. I'd also gained a ton of weight. Yet the one thing that made the biggest difference for me, has always made the biggest difference for me, was something not on the aforementioned protocol: fresh veggie juice. It's simple; when I drink juice every day I don't have horrible flares. When I don't, I do. No matter what else I'm consuming, it's the one consistency in my life.

So I declared myself a part-time housewife, stopped cooking, stopped packing my husband's lunch every day, and started focusing on myself as an individual. I managed to eek out some incremental progress until my dog was seriously injured in July, forcing me into full-time caretaker status once again. And that's when my bitter resentment took over. For too long I've felt like I was my last priority. Everything required to take care of everyone else is urgent, while I sit here withering away, desperate to regain a sense of myself, and terrified I never will.

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Tuesday, September 4, 2018

Forward, Not Back

I'm sitting here trying to write a blog about how miserable I am, because right now I'm really flippin' miserable, but can't put the words together. Each time I try and pull up how I feel from deep inside, so I can ponder what to say to give my desolation body and life, I hurt. So I stop pulling. Because once I start to feel that hurt everything seems pointless. Writing anything. Doing anything. Being anything. But by denying myself the pain of feeling, I'm blocking any access to the joy of living. It's now at the point where I'm so alienated and estranged and isolated from everything and everyone I can't even access my words.

I've been here before and can't believe I am again. I do this to myself. My anger over my relapse becomes bigger than anything else and I allow it to overtake me. Eventually it paralyzes me. I guess ultimately I will become so miserable that I'll be forced to do something about it, but in the meantime years are passing me by. Which makes me oh so angry...

It's silly, me sitting over here trying to figure out how to become who I used to be again. The last three years have changed me, eternally, just as the three before that and the three before that and the three before that. Why am I just now realizing that what I've been doing is basically trying to become who I was in elementary school, after I graduated from high school? It's asinine. Who would want to do that?

There is one direction in life, I know this. I also know I can't navigate the road ahead if my eyes are stuck on the rear-view. I cannot feel joy until I process through the pain. I won't find my direction again until I can easily access my words. And without a doubt I will never find the freedom to move forward until I release my hold on the past.

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Thursday, June 28, 2018


The ideal shape of the female form has changed a lot during my lifetime. When I was a kid in the '80s it was all about Jane Fonda's Original Workout. Thin and toned with tits, that's what we were supposed to want to look like. By the time I became a teenager in the '90s, the "supermodel" had been born. If we couldn't manage to waif our bodies into the Kate Moss prototype, we at least had the decency to shoot for the slightly more sultry, if equally hard to achieve, Linda Evangelista. Then Jennifer Lopez blew everything up with what, at the time, was considered a rather large rump. Hip hop rapped about the glory of big booties and small boobies. It was the first time I became aware of how valuable diversity in the feminine aesthetic truly is.

So much has changed since last century. Now women get implants in both their boobs and their butts. The plus-size model isn't only for the plus-size catalog anymore, if season sixteen of Project Runway was any indication. Women are lifting weights on their quest to obtain both strength and health. I know that was my impetus when I started weightlifting in 2013, and it revitalized my life. It also, inadvertently, dropped me into a size six. Although I weighed close to 150 pounds, all that muscle made me appear smaller than I'd ever been in my adult life. It was glorious. I looked great, I felt great, and my fibro was darn near in "remission." Then the grand relapse of 2015 happened. Too fatigued to even drive to the gym, let alone complete a workout, exercise was one of the first things I lost.

It was a brilliant idea to get rid of all my larger clothing when I was sliding into that six, let me tell you, because today I'm back in a size ten. My arms no longer have visible muscles, just a thin layer of cellulite. I'm wearing a Brazilian waist trainer when I go out, which does a reasonably good job of squeezing my belly fat into both my boobs and my butt. But seriously, I'm struggling. When I look in the mirror I see a woman who used to look good and, sadly, just don't no more. What's worse is I've allowed it to affect my self-esteem. Deeply. I'm trying to accept the concept that I'm supposed to love my body regardless of her size. It's hard. Ashley Graham is my spirit guide on this journey. Every time she posts a size-sixteen bikini or lingerie pic on Instagram, I study it. For a girl who grew up being told Heidi Klum was "the body," my attempt to normalize what I see is a work in progress. However, the irony isn't lost on me that I'm in awe of Ashley's radiance because it comes straight from her sense of self-confidence.

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Thursday, June 21, 2018

Write Like Nobody's Reading

Me and this blog, we have a tenuous relationship. I made a big fuss about how I was going to resume blogging and return to facebook a few months back. Like every other attempt to return to this construct, however, I quickly fizzled. Blogging went fine, except I had no clue what the point is or why I'm doing it. Finding myself purposeless, it didn't take long before I didn't know what to say. Facebook, on the other hand, was a profoundly disappointing experience. And this time it had nothing to do with the people. The people were quite wonderful, actually. But facebook himself was inhospitable. Every time I logged on he informed me in BIG, BOLD, RED letters and numbers how poorly my page was doing. I'd been gone a long time and people weren't engaging with or responding to my posts. I mean the ones facebook circulated got attention. But since I declined to pay facebook, my posts were circulated to very few people. Say 500 of the roughly 12,000 who follow, if I was lucky. For a girl whose type-A will never die, it was extremely frustrating. Eventually the negativity became too much. I filled out a scathing survey about how user un-friendly the whole experience was and stopped logging on.

Yet here I am again. At this point in my three-year relapse, I'm finally getting my illness managed. Again. I could be chronicling my journey--how hard it is to exercise when I hurt this bad, how I tapped out on my anger and have been basking in the afterglow of acceptance, how aimless and purposeless I feel trying to rebuild my life... But I'm not. Because I still haven't found my purpose. All I know is I cannot continue to write a blog where I'm defined by my illness. Fibromyalgia is not the sum of my whole; it's a part of my person. Yet it's the topic I founded this blog on, named it after, and have spent years and years ranting and raving about. Where on earth do I go from here?

There's a whole world going on around us I want to write about--not as it relates to fibromyalgia, but how it relates to me. My thoughts, perceptions, feelings, opinions, experiences, and pain. Frequently my illness comes into play, for it is a defining presence in my life, but it's not always about dealing with fibro or its impact on my day-to-day operations. Sometimes its just about me--a woman reacting to the world I live in. Yet the very concept is terrifying. Opening up my truth in an age rife with so much unfiltered, unadulterated hate seems idiotic. Giving anyone with an opinion access to judge my life and words feels like I'm begging for a kick to the teeth. I'm not. But if I don't write like nobody's reading, if I don't start telling my truth without regard for the reaction of others, I might as well put this pen down right now.

Thanks for joining,

Tuesday, March 6, 2018

Six Months Later

Last August my husband embarked on two new endeavors, both of which meant a lot to him. He signed up for a once-a-week night class and started independently studying for a really intense licensing exam. As a man who works full time and logs in another part-time job's worth of hours in overtime, he's already stretched really thin. I didn't vocalize my concern at the time, lest I appear unsupportive, but I couldn't conceive of a world where he had enough energy to devote to all three commitments successfully. Unwilling to proclaim his ambitious efforts destined for failure, however, I refused to give breath to my fears. In fact I did the opposite. Like a good wife I shut my mouth, smiled, and threw all my support and encouragement behind him.

I also decided the only way to get through this next phase was to subjugate my own needs to take care of his. While there was some gallantry to my thought process, it pretty much lacked logic. The reality is I'm a high-maintenance trainwreck who's constantly sick and struggling to fight my way back from an atrocious viral relapse. Not exactly a model cheerleader, let alone life partner, to get someone through an intense time of personal improvement. Nor am I a person who has the luxury of not taking care of myself. Especially once the stress and exhaustion of his demanding schedule started turning my husband into an ogre...

Ultimately life became unbearable. Again. My reaction was to stop talking and retreat into myself. I felt increasingly trapped in a life I couldn't stand and had no control over. But my husband was near the end of his commitments and struggling to stay afloat, so I couldn't very well say anything to him. The last thing he needed as he raced toward success was a nagging wife to distract him with her whiny little problems. Isolated, alone, and angry, my mental health took a hit.

He passed the flippin' licensing exam last Friday. The floodgates of my misery burst open on Saturday. For the past week we've done a lot of talking. I'm sitting on months worth of unexpressed anger and resentment that has turned me bitter and hostile. He's got an entire life he's been avoiding and has to start participating in again.

While I'm relieved things are on the right track, I'm disappointed in us. We've been together nearly nineteen years and have had more hard times than most people have hairs on their head. You'd think we would have learned how to navigate life's challenges without falling apart, as individuals and as a couple. But instead of coming together, we both retreated into our own individual survival modes and wreaked a fair amount of havoc in our own lives. That havoc has to be cleaned up. So while it seemed like passing that licensing exam meant the hard work was coming to an end, I'm quickly realizing it's only starting to begin.

Thanks for joining,

Tuesday, January 23, 2018

Dying Inside, Again

Diminished. Irrelevant. Unnecessary. Incapable. Right now, those are the words that describe me. My inability to engage in life, which I'm working so hard to change and thought I was improving on, is simply inadequate. Nobody's got the time or the patience to sit back and wait for me to get it together. And why would they? I've already squandered enough of both to suck up everyone's lifetime.

Is there a soul on the planet I can talk to? Because right now I feel alone and isolated, like a woman existing on an island of herself. But that island has no fruit left on her trees, and the wildlife have all swum or flown away. So I sit and stare out at the sea. Starving. Wondering if anyone is ever going to rescue me. Knowing full well they won't. I'm responsible for every ounce of my survival and can't even feed myself.

This is what year thirteen with an invisible, chronic illness has done to me. Annihilated my self-worth, estranged me from those I know and love, suppressed a life that was supposed to get lived, and turned a vibrant and capable woman into a blithering, pathetic pile of weakness.

It didn't have to be this way. It didn't have to get this bad. I could've gotten sick and not lost my mind. I could have, at least once on this thirteen-year journey, encountered a doctor who didn't treat my life-altering insomnia and muscular pain like a t-shirt I decided to don because I liked the way it felt. Is it a myth, or are there people who get this illness whose friends and family rally together and lift them up? Are those people accepted for who they have now become and not persecuted for never being enough?

I'm retreating further into myself. Every time I get this low, a piece of me dies and stays here. There's less of me to pick up and move forward with. Right now I wonder if I'll ever be able to move forward at all. Thirteen years ago my life splintered off into a parallel universe. Although it seemed like I was still part of the normal world, my truth no longer existed there. Now I'm floating in an abyss of madness existing somewhere between my truth and everybody else's world. My reality is pecking at my flesh, nibbling on my toes, eating chunks of the goodness that was once my soul. At the pace I'm going it won't be long before there's nothing left inside me at all.

Thanks for joining,

Wednesday, January 10, 2018

Healthy Burnout

I don't know if it slowly crept up on me or hit me like a freight train. All I know is I woke up last week utterly unable to continue spending the majority of my time in my kitchen. To fully understand how I got here, I've got to rewind to last April. Picture it: Los Angeles, 2017, 4:30 a.m. I was sitting on my sofa sobbing because I couldn't sleep, hadn't slept in I don't remember how long, and was still getting sicker following my relapse in 2015. I was so out of control of my circumstances, desperate doesn't even begin to cover it. So through my tears I grabbed my computer and dialed up Amazon. I'd been hearing about a revolutionary book that uses nutrition to heal mystery illnesses for some time and, quite frankly, short of joining a cult was willing to try anything to regain my grasp on my health. So I spent $15 and ordered the book.

After I warily stared at it for a few days, I finally picked up the darn thing and started reading. By the time I turned the last page, I was ready to give it a whirl. Thus began the indexing and cross-referencing and researching of various nutritional supplements to find out how to treat my myriad symptoms in the most efficient and affordable way possible. There were significant foods I had to eliminate from my diet and others I had to figure out how to add. This book preached veganism, which I didn't even begin to try, but ultimately I took what was already a healthy diet and turned each meal into a supercharged dose of nutritional medicine. And what I did was a half-ass attempt compared to what was prescribed...

It's been nine months and I'm feeling worlds better. I'm also severely burnt out on nutrition as a concept and want to set fire to my kitchen. I want to throw my juicer and blender off a cliff. I want to stop buying produce and eat tater tots and queso dip for dinner every night, followed by a midnight snack at In-N-Out. I want biscuits and gravy for breakfast, not a fruit-and-algae-infused smoothie. The thought of pushing one more stick of celery through my juicer makes me want to yank out my hair by the root...

All this animosity has been brewing inside me and it finally roared last week. Clarity came to me as I thought back on the early days of learning how to eat healthy. Back in 2011, the number one commitment I made to myself was to make slow, reasonable changes I could stick to for the rest of my life. But 2017 me was so desperate to stabilize my immune system, I delved head-first into a "diet." The long-term result of this diet was I became food obsessed. It was too restrictive to last a lifetime and inspired cheating that was far worse than what I ate before I began. Which is why diets don't flippin' work. Never one to throw out the baby with the bathwater, I'm reassessing and adjusting. After all, I am feeling worlds better. There are many beneficial components I'm keeping. But I'm also moving forward with balance and the firm knowledge that it is only what I can sustain that can sustain me.

Thanks for joining,