Month: August 2014

Nostalgia and Realizations and Limbo

Posted by

5

A funny thing happened the other day. I can’t remember why, but I decided to browse through old notes I made while in the acute days of illness. Oh yeah, I think I wanted to see if I had written any journal-like chronicles of my suffering, in order to post here so people could understand what it was like. I didn’t see any at first glance – most of my notes consisted of supplements to try, and other avenues of healing to investigate. But among those, I found little snippets of insight into my life and illness, realizations about the bigger picture of what was happening to me.

Suddenly, and strangely, I found myself becoming nostalgic for those illness-ridden days. You see, in the midst of suffering, I was also making important self-discoveries and gaining inner strength. It brewed under the surface of my suffering, hints of it peeking out in flashes of insight, providing inexplicable solace from time to time. Not only that, but I had such hope sometimes. (During the times I could feel it through the despair, that is. I couldn’t always.) I frequently thought to myself, “If I could just get my health back…” What? Everything would magically be okay? I’m not exactly sure what I thought. But I was so hopeful for all the great things I could do once I was well. I had such zest for this possible, theoretical future life – certainly more so than I had pre-illness. Having your health stolen will do that to a person.

Anyway, my health did drastically improve eventually, for which I’m thankful every day. But you know what I found here within this health, in the aftermath of acute suffering? Drudgery. A whole lot of goddamn drudgery. That, and alienation. I no longer have close friends, or feel the camaraderie of sharing with other sufferers. I feel disconnected from my illness support groups, not sick enough to currently relate to everyone, but not well enough to relate to normal, healthy people. So, I basically feel disconnected from everyone.

On one hand, of course I am grateful for everything my recovery has brought me: the ability to do many things I previously could not do, eat things I could not eat, etc. I AM grateful to be past the horrid suffering which left me longing for death on a near-constant basis. However…I did not want to recover just to return to mediocrity and drudgery for the rest of my days, or sit here feeling alienated from the world because of my health experiences. Beyond the “OMG, I can eat a bowl of berries now without getting an excruciating migraine”, and “I can actually focus on something other than my constant ill feelings” and “I can’t believe I can inhale normal laundry detergent fumes without wanting to pass out and die,” there’s an anticlimactic and somewhat jarring  “Oh shit…THIS is my life?” Now that I’ve sampled the underworld in the form of chronic illness, and re-emerged into real life, once the shock wore off I could see everything wrong with it – like all the bad decisions I made which culminated in the subpar existence I dwell in these days.

It’s not all bad. I savor the gains I’ve made like a person set free after a prison sentence. But the rest of it? I’ve come to realize that I’m not being true to myself in my life. One example is that I’m wasting away working a job I hate, eroding my spirit little by little. There are other examples too numerous to list. This is unacceptable, but I don’t know how to change it, a thought that leaves me vaguely miserable and anxiety-ridden.

To solve the job issue, I’ve read several articles and a few books about mid-life career changes, and following your calling in life, but those texts don’t feel like they were written for me. They were written for people who already had decent careers for a couple of decades. People with savings accounts, and spouses to help them in their daily lives. They weren’t written for people who squandered their potential, had a baby too young, wasted years in bad relationships, then became ill for years while whatever skills they learned in college grew rusty, and technological advances rendered them nearly obsolete. How can people like me, who work like dogs and live paycheck to paycheck, aspire to such lofty goals as career changes, especially when there is so little time, money, and energy leftover once responsibilities are fulfilled? Not to mention, even if I had the time and money to, say, return to school, what about my ailing brain? College requires intelligent thought, which can be scarce in these post-illness days. Me not smart no more. But that’s a side note I won’t bother with for now.

So anyway, within my own private nightmare of illness, I had breakthrough periods of hope, of inspiration. My goal was to grow and heal…and I did! What a miracle! But here I am after the novelty of healing wore off, staring in the face of the drudgery and mediocrity that is eroding my spirit again, wondering “What the hell am I doing?” and “What now?” Hence my nostalgia for the illness days, which contained the ability for me to hope and dream without the necessity of taking action. After all, I was too sick. Now that I’m less sick, I have shit to figure out.

Part of me feels guilty, like I’m taking life for granted. Do you know how desperately I longed to return to my normal life, drudgery and all? How many others would long to trade their suffering for my life, problems and all? So many, I’m sure. But now that I’m here, it’s not good enough? Like, who do I think I am, anyway?

I think what happened was that getting sick stripped my life bare, exposing all of its problems so clearly. I realized during these illnesses (MCS and FQ poisoning), as I was steeped in fear of my terrifying symptoms and my uncertain future, that this fear was not confined to my illnesses; It had been an underlying factor permeating my existence since as far back as I could recall. I had been scared of everything my whole life. I was scared of showing my true self to others, scared of failure, but also scared of success. (That realization was a huge shock). In short, I was scared of living. And in hindsight, I could reflect back on my life and see how most of my life choices were actually rooted in fear. How I held myself back for fear of failing, and fear of others discovering I was unworthy. Unworthy of…what? Who knows. It’s like I felt unworthy of life in general, but functioned for years and years completely unaware of this, as well as my other fear-based patterns. Getting ill forced me to recognize this, by so desperately longing to return to life, but realizing the way I had been living all along had actually been harming my spirit on a deep level. And now that I’m better, I can’t go back to my former state of existence, unconscious of my own destructive patterns. But what should I do instead?

I have no idea.

As I said, there’s no instruction manual for re-entering life after two chronic, invisible illness which are unacknowledged by most people, aware of your destructive patterns, and living paycheck to paycheck. I literally have no idea what I’m doing, or where to go from here, alienated, shell-shocked, none of my old paradigms working any longer.

So, what now? I guess I’ll just carry on until something comes clear. Maybe if I try to live more fearlessly, being true to myself in the process, opportunities and ideas will more naturally open to me. I hope so, anyway, because that’s all I can think to do. Surely I won’t spend the next several decades functioning in this state of limbo…will I? At the very least, I would love to figure out how to reconcile gratitude for recovery with discontent for the conditions of my life which are making me unhappy. It feels like a contradiction, even though I guess it isn’t. It’s simply being aware of gratitude while recognizing that I can’t return to the dysfunctional ways I used to live, and not quite knowing what to do in the meantime.

I guess in this way, recovering from illness has been like a metamorphosis. Like emerging from a cocoon, remembering the caterpillar days, but not yet knowing how to fly. I hope to someday learn…or at least remember that underneath my troubles and uncertainty, a hidden but powerful, instinctual part of me already knows.

Fully Functional Opposable Thumbs: Fun While They Lasted

Posted by

0

I am in such a pissy mood this fine evening. Do I want to explain why? Hmmm. Hmmmmmm…. I’m not really sure. Let’s see…

For one thing, electricians have been rewiring my apartment for the last 2 days. This place is old, and the wiring probably violated some kind of building code. Anyway, I came home today from the sweatshop where I work to find most of my furniture moved around and dirt everywhere – dirt which probably contains microscopic flecks of lead paint, might I add. So I got to spend the last hour moving furniture and dropping expletives, like when I discovered dusty layers of crud all over my kid’s freshly washed sheets, my rugs, and the toiletries on my sink. Oh, and when I found out my bathroom fan is now wired to the light switch so it whirs annoyingly every time the light is turned on. I mean, come on. This is not a gas station restroom. Or…it wasn’t until today.

So, spending my evening moving furniture and cleaning dirt off my floors and surfaces sucked. It also allowed my other annoyances to bubble to the surface, one of which is that this very post has been saved in my drafts for almost an entire month and I haven’t managed to finish it. Not only that, but I first started writing it several months ago. It bothers me that life is so hectic that I rarely find the time to write, even though writing is one of the few activities that fills that vast hole of despair I wrangle with from time to time. Or if I do find the time, I’m too exhausted to form cohesive sentences.

Of course, my ever-pervasive perfectionism might also, sort of, hinder the writing process as well. It just might.

Anyway, energized by my aforementioned pissiness, I decided that I’m going to sit right here on my slightly askew couch, surrounded by my slightly askew furniture, lead paint dust underfoot, and finish this blog post tonight, by god. Finish this shit and post it, even if it’s not perfect. Even if it has…(GASP)…some typos. EGADS! So, here we are.

Old thumb post I’ve decided to publish, potential typos and all (take THAT, perfectionism!):

I was blessed with these working thumbs for thirty six and a half years, though I doubt I used them for much besides sucking and inadvertently poking myself in the eye during my first six months of life. Still, I kind of thought their functionality would last my ENTIRE life, and I don’t show signs of dropping dead anytime soon. This is distressing.

Oh, what happened to my thumbs? Right, that detail would help, wouldn’t it? Okay. You see, at work I performed a task which I’ve done thousands of times before at my menial job for the last 10 years.

That’s it. That’s all I did.

Oh, you wanted more? There really isn’t more. While this work task was slightly more labor-intensive in terms of quantity and time spent on its performance, this very thing occurs every so often at my job, and so was nothing new for me. I even performed this task repeatedly in the early days of floxing with no issue.

So what gives?

Physicians may disagree, but I suspect I’ve not yet arrived at the age where loss of functionality in my joints can be blamed on aging alone, especially given the abrupt onset of my thumb issues.

Wait…I never explained what’s wrong with my thumbs, did I? They fucking hurt – that’s what’s wrong with them. More specifically, once the time consuming task was over at work, they were sore, and the soreness never healed. It’s been more than three months. My thumbs now hurt when I perform certain tasks both related and unrelated to work, from the task that fucked them up to begin with, to washing dishes, to typing, to putting on pants, to cutting paper to make the collages I so love to make.

Did you hear that pathetic crushing sound? It was my heart breaking at the thought of losing my ability to create the art I like to create without pain or limitations in movement. But have I lost it? I don’t know, because I don’t know what’s really wrong with my thumbs, or whether they will heal. They make these snapping noises sometimes, in addition to pain. That can’t be good. I probably need to see a doctor, but I can’t afford tests and xrays, and god forbid if something is wrong with them and I need specialized care. I suppose I could agree to a payment plan with a doctor’s office, and then never pay the bill like I did when something was wrong with my kidneys and I had to get tests that never yielded answers. Then I could welcome yet another bill collector into my life, whose calls I ignore daily. We’ll just have to see.

The elephant in the room here, is why the hell was I suddenly injured from a task I’ve performed occasionally for the last 10 years with no previous trouble? Did my thumbs finally reach their maximum threshold of normal usage after being damaged by Cipro?*** I’m suspecting so. Of course, can you imagine the doctor’s reaction if presented with this information?

“Um, yeah…my thumbs are injured from doing this work task I’ve done thousands of times before, and I think it’s because my tendons and cartilage were weakened by a Cipro prescription I took 5 and a half years ago.”

I can see the incredulous look on this doctor’s face all the way from the alternate universe in which I decided to actually tell this to a doctor. Therefore, I will not bother to mention it in this universe. If I see a doctor, and that’s still an IF at this point, there will be no mention of Cipro. Why? Because I don’t want to be referred to a psych or offered Prozac like the last doctor who told me I was crazy for believing Cipro harmed me. Instead, I’ll be the good, agreeable patient and let the doctor figure out what’s wrong with me, because he knows best, right? What do I know? I’m too dumb to understand a package insert anyway. Let him blame my thumb woes on overuse, or even age, even though I’m still relatively young. Then I’ll go home and add my thumbs to the list in my after-death plan (I’ll post more about that some other time), try to carry on with these mangled, pain-riddled appendages, and like everything else that’s gone wrong post-Cipro, wait around for months to see if they ever improve.

Or, I’ll just skip the doctor altogether and keep on waiting around. It’s what I’ve been doing all this time, anyway.

***I know it sounds crazy, but frequent muscoskeletal injury from everyday tasks is not uncommon post-FQ Toxicity. Some of my other injuries include: 1. My shoulder/arm, after putting on a coat (this bothered me for approximately 2 years) , 2. My feet, after wearing 3″ heels for 6 hours (my left foot still has not completely healed, 7 months later), 3. My shoulders, from something new I was doing at work. Doctor said it was bursitis, recommended physical therapy – I declined for financial reasons. They have mostly healed now, but it took more than a year. 4. My wrists – again, from a work task. They eventually healed, but now I have a new wrist injury of unknown origin, going on a month now. 5. My foot. I don’t remember what was wrong, or where it hurt, but I remember it was sore for weeks after walking up a tiny hill. And I mean, tiny – about 3 feet long at a 20 degree incline. 6. My feeble brain cannot recall the sixth injury, but I know I had more than 6 during the last several years. Either way, there is no reason a person in their early thirties should injure themselves while walking or putting on a coat. Somehow, FQs seem to accelerate the aging process, weakening joints and tendons – this is why some people end up in wheelchairs. Although my injuries are annoying and troublesome, I’m grateful every day they weren’t severe enough to hinder my ability to walk. 

“I do not want to die…

Posted by

0

“I do not want to die…until I have faithfully made the most of my talent and cultivated the seed that was placed in me until the last small twig has grown.”
~Kathy Kollwitz

My Cipro Story

Posted by

3

This is the condensed story of my adverse reaction to Cipro, which was printed in a booklet containing victims’ stories to take to Washington DC for this year’s Fluoroquinolone rally. Because there was a 1000 word limit, I omitted several key points which I will probably not bother to expand upon now. I would have included more about PTSD, time lost with my son, MCS, and the Twilight Zone feeling that permeates my existence now. How I have to sit on the sidelines of life watching people take Fluoroquinolones left and right, and then develop mysterious health ailments which doctors can’t diagnose, or never link to the drugs. It used to fill me with rage, or make me cry, but now I feel like I’m viewing it all objectively, like life is a movie I’m watching and have no control over. I guess it’s a self-preservation mechanism. It’s simply not good for me to get all worked up over this anymore.

Anyway, my story:

About five years ago my life was forever altered by a simple round of antibiotics taken for a suspected commonplace infection. September 23, 2008, a date forever branded into my memory, was the mark of my life’s distinct “before” and “after”.

September 23, 2008 is not the day I began taking my prescription for Cipro; Rather, it’s the day I took my last pill. The week prior, I had visited my doctor for a suspected UTI. Like the date, her words also burned into my memory. “I’m going to prescribe you Cipro.” Sounds so innocuous – not at all something that would or should be remembered. After all, why would anyone suspect a round of antibiotics could ruin their life? But like that moment in a horror movie when the viewer shouts, “No! Don’t open the door!”, knowing the terrible fate which awaits the character on the other side, I found myself replaying that moment with my doctor over and over, as though I could go back in time and refuse the medication. In my memory I became the objective viewer of my own horror movie, watching the “before” version of myself right before opening that door. Because I knew that no matter what, from that point forward my life would never be the same.

While taking the medication I noticed few side effects. In hindsight, I felt twinges of symptoms that would later worsen into the unrelenting hell of my adverse reaction, like fuzzy thinking, slight neuropathy, and headache, but nothing severe enough to warrant stopping the medication or even researching side effects. That all changed on September 23, 2008. While my worst symptoms didn’t appear immediately, the date is symbolic because I remember sitting on my bed nursing the worst headache of my life, final pill in hand, wondering whether I should take it. Like somewhere deep inside I knew that swallowing the pill would lead me one step closer to opening the door in the horror movie. But like a good patient, I took it, because not finishing a course of antibiotics could have terrible consequences. (So could finishing it, I would soon learn.)

The next night I was talking on the phone when suddenly thinking and speaking became difficult. The conversation was straightforward, yet I was having an inordinate amount of trouble keeping up mentally. The words I managed to utter stumbled out slowly and awkwardly. Though disconcerting, I blamed it on sleep deprivation, thinking I’d feel better in the morning. I was wrong. My ability to think clearly would vanish almost entirely for the next few years, only to return sporadically until settling on roughly 80% of my former functioning. At that point, I had unknowingly opened the door in the horror movie and crossed the threshold.

The next day brought a wide variety of strange and terrifying symptoms along with the confusion: burning, stabbing pains all throughout my body, numbness and tingling in my extremities and even my face, headache, joint pain, weakness, poor motor control, extreme anxiety, and an overall sensation of vibrating, like being plugged into an electrical outlet. It was as though a bomb had exploded in my body. In spite of my mental sluggishness, I remembered that hints of these symptoms had begun over the previous weekend and decided to Google “Cipro side effects”. Horrified, I learned all about Fluoroquinolone Toxicity and its victims, including the possibility of permanent injury to one’s tendons, and peripheral and central nervous systems.

I immediately called my doctor’s office and made a follow-up appointment. My online reading revealed a rampant denial from within the medical community. However, I still naively thought that once presented with obvious facts, my doctor would not only believe me, but she would somehow help me heal. I couldn’t have been more wrong. In spite of my obvious, abrupt onset of symptoms, along with the Cipro insert stating the possibility of permanent neuropathy, as well as a letter I had found online from a doctor explaining Fluoroquinolone Toxicity, my doctor did not believe I was experiencing an adverse reaction to Cipro. I was astounded.

In the months and years that followed, my health deteriorated further until I was barely functioning, yet forcing myself to work day after day while enduring sickness nearly every single moment. I was a single mom forced to choose between working through my hellish nightmare of symptoms and losing custody of my child. Meanwhile, I kept returning to doctors and seeking help, practically begging them to acknowledge my adverse drug reaction. Almost no one would. The only validation came from a neurologist who researched Cipro but couldn’t provide treatment, and an integrative physician whose nutritional treatments were unaffordable, and not guaranteed to help. The others merely offered Prozac, still believing my symptoms were psychosomatic.

Words cannot convey the hell I endured physically and mentally before finally, very slowly seeing improvements during my third year, no thanks to any doctor. I researched, talked to other sufferers, and guided myself through dietary and lifestyle changes which helped bring me to an acceptable level of health. Now in my fifth year, I’m grateful every day I am no longer in the depths of suffering, but my body and my life will never be the same. Though mild in comparison, I still have neuropathy, chemical and food sensitivities, insomnia, and pain, along with medical-induced PTSD. I lost years of my life, and precious time with my young son which I will never get back. It’s my sincere hope that my suffering not be in vain, that my story will help provide awareness of Fluoroquinolone Toxicity, expose the drug companies’ minimization of this issue, and prevent the suffering of untold masses. We must protect unsuspecting people by informing them of the dangers of Fluoroquinolone drugs, so that their lives will never become their own personal versions of a horror movie: tragic and preventable, with a distinct “before” and “after”.

I have the nervous system of an electrocuted insect. Also, I like cats. And the afterlife.

Posted by

5

I work in a cesspool of noise. I was recently informed that this cesspool of noise will soon grow exponentially because a new business is moving in next door – a business that installs audio systems into cars and makes a shit ton of noise. That’s just fucking super.

I already wear earplugs most of the day. I also wear them all night, otherwise I’m at the mercy of the late night/early morning stirrings of my upstairs neighbors – because of the hardwood floors with poor insulation combined with their incessant clomping and stomping, the clack-clack-clack-clack-clack-clackclackclackclackclack-ing of their daily stampedes above my head.

Did I mention their only footwear consists of hard-soled shoes? I mean, who wears that shit first thing in the morning? My upstairs neighbors do. I guess they’ve never heard of cushy slippers. Either that, or these people are actually half-devils with cloven hooves for feet, sent to eternally disrupt my peace.

Did I also mention that I hate them for existing? This is awful, but understandable, since my degree of hatred is directly proportional to the amount of sleep deprivation their cloven hooves have recently inflicted upon me. Since sleep deprivation is a form of torture, I get a free pass for any resulting negativity.

Even this cat, who has started appearing outside my living room window, is all like: “Whoa. What’s with all the RACKET?!” And she’s hearing it from outside.

Window Cat

The fucked up part of all of this? I’m a quiet, peaceful person. I love stillness. Relish it. REQUIRE it, even. And like solitude, I never fucking get it. Here I remain, stuck in a noisy job that I hate, in a noisy apartment that I also hate (mostly because of the noise), which I can’t afford to leave because I haven’t figured out an escape route from my shitty, noisy job. And now it’s going to get worse?

Hey, universe…do you stage these events to torture me? Job well done. (That’s a partial Gilmore Girls quote, BTW.)

In a future entry I’ll explain how my floxing contributed to remaining in the purgatory of my shitty job, but for now I just want to slump over exhaustedly and whine a little in my new blog.

Speaking of…I’m really hoping this blog will amount to something more than a complaint repository. However, since complaints so often seem to fuel my desire to write…who the hell knows.

I feel compelled to point out that if I could just sleep like a normal person, perhaps my neighbors would not evoke my internal wrath. At least…not as often. But since I have a such a high startle reflex, and an overly-wired nervous system, I don’t sleep like a normal person. Every once in a while I’ll get restful sleep, but for the most part I’m chronically sleep-deprived. And yes, Cipro did this to me. My sleep has much improved since the first two years – I don’t get jolted awake by brain zaps while falling asleep anymore, thank god – but my sleep is far from wonderful.

But nevermind that for now…Let’s talk about the cat who comes to visit. She has shown up twice now, and both times I sat with her on the front stoop after her manipulative cries for attention and/or food won me over. She’s sweet, and has lime green eyes. I like her.

We have some things in common:

1. She’s a little jumpy, and she constantly trips over herself just walking a few feet.
2. She seems a little scatterbrained. Today she kept going back to the windowsill to sit, then acting surprised to see me calling her from the stoop. Like she was all, “Oh, I forgot you were still out here. I was going to meow at you from outside the window again.” So she’d jump down and come play with me for a while, tripping over herself on the way, then go right back to the windowsill to stare into my empty apartment…then notice me calling her again, stumble on over, and end up back on the windowsill after a few minutes of nuzzles and head rubs.

See? She’s awkward and she’s got memory problems and a short attention span. I think we’re soulmates.

I can’t adopt her, though. For one thing, she might already be someone’s pet. For another, I’m slightly allergic to cats, and my kid is moderately allergic. Also, I can’t afford a cat. If the thing gets sick and needs vet visits, I might have to put it to sleep, or give it away, or starve myself to pay for it.

Not to mention, how will I handle issues like fleas? Chemicals and I do not get along well. Even if we did, I cannot fathom squirting insecticides onto living creatures like I did with my former pets in my former, healthy life. Why? Because they might end up poisoned. You might think I’m being paranoid, but this happens sometimes. Just like people sometimes get poisoned from chemicals (and prescription drugs). I know what it’s like to feel poisoned day in and day out, with no relief in sight. I can’t potentially inflict that on an animal. Just thinking about it aggravates my PTSD.

Anyway, that leaves the option of researching natural ways to deal with fleas, which I can only assume have low to moderate success rates. Not to mention, I’m a little burned out from researching natural treatments for my own health issues, thank you very much. I can’t start doing that for an animal, too.

Wait…why am I even talking about this? My kid and I are allergic to cats, and therefore will not be acquiring a cat. Which is a god damned shame, because I love cats. My kid even says I’m a crazy cat lady without all the cats. That’s just sad.

Sigh.

You know what some people do when life deprives them of things? They start planning their afterlife, even if they aren’t completely sure it exists. I believe I started planning mine in the depths of my Cipro-induced misery. It will consist of a healing/decompression chamber to cleanse me of this chronic illness and trauma bullshit, and a GIGANTIC, luxurious bed…maybe the kind you can balance a glass of wine on without spilling it. There will also be an ocean, gardens (both flower and vegetable), fruit trees and bushes, endless sunshine, hammocks, people to massage me whenever I like, all the food and drink I was deprived of in life, vast libraries and schools, and endless art supplies. And now cats. I intend to read, write, create art, sleep (hey, its my afterlife – I can sleep it away if I want to), swim in the ocean, bask in the sun, eat and drink anything I want, get massages, tend to plants, and pet cats. It’s going to be awesome.

And if this afterlife doesn’t happen? So what. So I wasted some time daydreaming – big deal. It’s better than wasting time playing Scrabble on my phone, or being angry at another human, or scrolling compulsively through Facebook for hours…all of which I do on a regular basis. At least daydreaming about the afterlife involves thoughts of petting cats and eating cake and sleeping – precious, elusive sleep – creating a pleasant diversion from the seemingly endless suckitude of life. What could possibly be wrong with that?