Misadventures with Nasal Spray

I’ve had intermittent facial pain for the past 4 years, approximately. It mostly affects my left side, and can involve my nose, sinuses, teeth, jaw, eye, and ear. I have sought medical advice on numerous occasions. Here’s what I’ve been told at my various appointments, in pretty much this order:

“It’s probably allergies. Try this nasal spray.”
“It could be a tooth infection. Go visit a dentist.”
“I don’t see anything wrong with your teeth. Follow up with your doctor.”
“It could be allergies. Try this nasal spray.”

The pain and irritation comes and goes. I’d pursue an accurate diagnosis more frequently, but I hate going to doctors. My faith in the medical system was completely destroyed by years of visiting countless doctors who either dismissed my issues or couldn’t help at all. Therefore, it’s a rare occasion that I actually seek their help anymore – usually I have to be in somewhat bad shape to decide to brave their offices again. Not to mention, floxing gave me a higher than normal tolerance for physical discomfort by forcing me to endure illness and pain for several years with no help whatsoever. So, I tend to live with bothersome symptoms for long periods of time, hoping they’ll just go away eventually. Smart, huh? Yeah, I think so, too.

Anyway, one reason doctors haven’t been able to help is because all they seem to do is speculate rather than identify the root cause of the problem. Then they prescribe drugs to mask symptoms. But as weeks and months drag on, I inevitably forget these details and end up in an exam room again at some point.

This time, though, when my discomfort flared again I remembered the results from all the visits of the past, especially the “It’s probably allergies. Try this nasal spray” thing. So, I decided to try some nasal spray before heading to the doctor again. Luckily, I have amassed a small collection of little-used physician samples over the years, and so I happened to have two such sprays to choose from. I picked Nasonex, mostly because it was in arms reach the moment it occurred to me. Bonus: it wasn’t even expired.

Because my chemical sensitivities have improved so drastically from the first 2 years I was sick, I tend to forget I’m still very sensitive to drugs of all varieties. (I take them only rarely.) So, when I decided to squirt one spray into my affected nostril, I was surprised by the side effects that ensued in the coming hours.

First, I began to feel crappy. Yes, that’s a vague description, but it was a noticeable contrast from the previous two days of feeling relatively good. In addition, within a couple of hours I began to get joint and tendon pain, nausea, mild peripheral neuropathy of the itchy/crawly variety, muscle twitching, nausea, stomachache, and jitteriness.

I thought, “Oh no, am I coming down with the flu?” Then I thought, “Wait a minute…surely it can’t be from that ONE SQUIRT of nasal spray in my one nostril, can it?” So I googled “Nasonex Side Effects”.

The answer? Yes. Every single one of my sudden symptoms could, in fact, be related to that single spray of Nasonex. Well, except for the peripheral neuropathy, I think. Most medications tend to flare that no matter what – just another gift from Cipro that keeps on fucking giving.

But anyway…I’m going to share some gems I stumbled across in my google searches, just to illustrate how ridiculous life with sensitivities really is.

Some of my symptoms fall under the “normal side effects” category. That’s fine. I understand that even healthy people get side effects from medications.

Some of them, however, fall into different categories. “Flu-like symptoms” falls into the “call your doctor at once if you have any of these serious side effects” category. Oh really? No, thanks. That’s a quick route to a “paranoia” notation in my medical chart.

Now, jitteriness was another story. I didn’t see it mentioned on mainstream websites, so I decided to do another google search: “Nasonex jitters”. Of course, I got several hits. It must be a known but rare effect. Whatever. It happens. I am certainly no stranger to the concept of rare side effects. What struck me as beyond ridiculous, however, was this statement:

“Usually seen in women aged 50-59, who have been taking the medication for 2-5 years.” Uh…okay.

My search for “Nasonex twitching” yielded similar anecdotal evidence of this side effect, including:

“Muscle twitching is found among people who take Nasonex, especially for people who are female, 60+ old, have been taking the drug for 1 – 6 months…”

What? People, I’m 37. And let me remind you that I used ONE SQUIRT of that shit. One squirt, one time. I mean, really? What the actual fuck? I haven’t been taking it for a month, let alone 2-5 years. In fact, it had only been 2 hours. But my body, in its infinite, distorted wisdom, said “Ooh, 2 whole hours?! Break out the fucked up side effects – 2 hours is just too long to be on that drug!”

Suddenly I’m remembering AGAIN why I still have so many samples from the doctor’s office, and another reason why I always put off appointments: because I can’t tolerate the bullshit drugs they always want me to try. So, I guess it’s possible my face/eye/tooth/jaw pain is from allergies, but I can’t tolerate the medication long enough to test this theory.

I swear, the level of insanity involved in the aftermath of floxing is staggering, even to an old-timer like me. (By old-timer, I’m referring to my veteran floxie status of 6.5 years.) You’d think I’d be used to this sort of thing by now, but I’m fucking not. THIS SHIT IS RIDICULOUS.

Oh, and for the record, I have no idea if the Nasonex even helped. The pain and discomfort in my face lessened after a while, but it seems to do that randomly when I don’t take anything for it. So who the fuck knows?

I’m just going to end this post here. I have other ailments that have evaded diagnosis, but I’ll save elaboration for another time. Here’s a little teaser, though: be on the lookout for a post entitled “Misadventures with my Ass”, or some such thing. That’s sure to be a fun one. (BTW, get your heads out of the gutter – I’m referring to medical issues only!) I’ve got to gather the courage to talk about my ass woes publicly, though. It might take a while. Or, it might not happen at all. We shall see. Hopefully none of my ailments will eventually result in someone saying “Oops, we thought you had allergies or minor digestive issues, but it’s actually stage IV cancer. Sorry!” Because that would totally suck.

And I’m not making light of cancer in the least, BTW. It’s actually been a fear of mine for quite some time, to receive one of the worst diagnoses possible after years of medical mysteries.  So, that probably means it will happen someday.

Until then…stay tuned for more misadventures with ailments and modern medicine! Good times! Gooooood times.

Delayed Losses

Most people who have stumbled across this blog know about the delayed reactions Fluoroquinolone antibiotics can cause – health issues that don’t show up for days, weeks, or even months after finishing the medication. (My own adverse reaction took about 3 days to present itself.) For those unfamiliar with this concept, I recommend googling “Fluoroquinolone delayed reactions” to see what comes up. I would do it for you, and insert a link into this blog, but I really don’t feel like it right now. For one thing, I’m upset and just want to write, not search for links. Also, I’m not so interested in writing about the science behind FQ adverse reactions, or of proving my adverse reaction actually happened. At this point, with the mountains of evidence out there, along with the countless people joining support groups and vocalizing their suffering every single day, if you still don’t believe it’s possible I would like to simply part ways with you and wish you a long and healthy life, free of adverse drug reactions. (And I truly mean that.)

No, the reason I began writing this blog was so I could process the impact my floxing had on my life. I’ve found talking about it in a personal way – not a medical or scientific way – has been somewhat cathartic, allowing me the freedom to express the emotions and just the enormity of what I went through. Because it was enormous, and completely life-altering in every way. And even though I’ve experienced significant recovery, I’m continually surprised by how much my floxing continues to affect my life, even 6 years later. Surprised by the way it lurks under the surface at all times, and by the new ways I continue to realize its impact on my life.

For instance, for 6 years I’ve spent so much time trying to make the best out of my altered life that I’ve forgotten to mourn what I’ve lost. And I’ve been learning lately, that not only can FQs cause delayed physical symptoms, but they can also cause delayed losses.

What do I mean by delayed losses? I guess what I’m referring to is the realization of loss long after it actually happens. Or…reflecting back and seeing how a current loss is actually rooted in events from long ago. It becomes a delayed loss when you don’t realize it happened until weeks, months, or years later.

I think I know why I couldn’t mourn my losses while in the throes of misery. I think facing it was too much to handle at the time, back when I was spiraling down, unsure whether my life would completely shatter. When I was getting sicker, and more chemically sensitive, and reacting to my home and my workplace, I couldn’t grieve for all that I lost because I was facing losing absolutely everything. For a few months I felt like I was on the brink of homelessness, losing my ability to work, losing my child. I was so sick and so scared. Functioning in survival mode while frantically trying to keep myself afloat didn’t allow time to mourn.

When my health began to improve and the dust settled, I had moments of calm reflection in which I did allow myself to grieve my old life. But I think allowing too much grief scared me – I was afraid I would succumb to the despair that threatened to drown me while I was so sick. So instead of focusing on my losses, I began to celebrate my gains. While this allowed me to maintain a semblance of good mental health, I realize now that I inadvertently buried my emotions with my optimism. And what happens when you don’t fully process your emotions? Right – they come back to haunt you with a punch to the gut…like when you learn your mother’s health is failing.

I hate to admit this out loud, but I cut back on contact with my mother a few years ago. When I was struggling with health issues and worries, and just life issues in general, it became hard for me to talk to people…especially her. I was trying to maintain a positive outlook in the face of my life challenges, and every time I talked to her she brought me down. She started trying to guilt trip and manipulate me into calling her, and it angered me to have to deal with her negativity on top of my stress. So, I stopped calling. At least, not as often. And when we did talk, I was distant.

Fast forward to now. She was just hospitalized for 3 weeks due to her lung condition. I realized immediately when I heard about it that I wasted the last bit of decent health she had by detaching from her, and that it’s already too late to make up for it – she can’t talk for long periods on the phone anymore because she can’t breathe.

While I was taking a hiatus, setting boundaries to protect my mental health – or so I thought – my mother was losing the ability to care for herself and I had no idea.

Not only is that devastating and guilt-inducing all by itself, but it brought the old, buried emotions of loss to the surface from when my health was altered. I realized this is yet another impact of my ordeal: a loss of time with my mother. None of that would have happened had I not gotten sick. I wouldn’t have been overwhelmingly stressed, and she might not have been as needy had I been able to talk to her occasionally like I used to. My fucking Cipro nightmare indirectly cost me the last remaining healthy years with my mom. Because even if she lives several more years, she just isn’t the same. I will never get my mom back – not the mom I used to know.

I’m sobbing as I write this. Not only has my heart been ripped open, but I’m remembering all that I lost during those sickly years. Every single one of my relationships suffered. My son, my best friend, my parents, my brother and his family, my other friends. I’d say my boyfriend, but he’s the only one I still talk to regularly. (But actually, I almost lost him as well due to the stress of illness and the ensuing upheaval.)

The worst part is that it’s mostly my fault I lost touch with everyone. I was too sick, yes, which is understandable. But on top of being sick, I was embarrassed about the state of my life, and my struggle. I was ashamed that I wasn’t the same person – that I was sick, and slowed down, and less fun and intelligent than I used to be. I didn’t want people to notice that I was only a shell of who I used to be. And even though I’ve improved, my life overall still contains a struggle I don’t necessarily want to reveal to people. I want to be able to tell them that I’m doing well and enjoying life, but I can’t. All I can seem to say is that I’m not as sick as I once was, but I’m still struggling and stuck and vaguely miserable. I guess that’s a different reason for my shame, and partly why I didn’t make the effort to reconnect even after I began to get better.

So, the impact of my health ordeal is even greater than I realized. Through learning of my mother’s failing health, I’ve become reacquainted with the losses from several years ago which I never fully processed. I’m seeing the ways my illnesses impacted all of my relationships. As I glance around as a somewhat healthier person who is able to do and enjoy more in life than I thought I would at my worst, I see how everything is altered. It’s like time was suspended for me – as though I traveled somewhere for what seemed like a week but was actually 6 years, and was shocked upon my return – expecting everything to be the same.

But nothing is the same. Everyone’s life has continued without me, and I’ve mostly missed it. I’m looking around, and it feels like no one is there.

After 6 years, I still can’t believe how alienating this experience has been, and just how much it robbed from me.

I can’t imagine how I’m going to deal with losing my mom, or the anger and devastation of knowing this loss actually began 6 years ago when I swallowed those pills. Or the guilt of knowing I’m to blame for our decreased contact the last few years. I mean, I understand why it happened, but I can see now that decreasing contact with her was not the way to handle things. I’m not sure how I’ll ever forgive myself for that.

Coping with Insanity (The World’s, not Mine)

I was going to post a stupid and probably redundant question to my online support group for Fluoroquinolone Toxicity sufferers, but decided my resulting rant was too negative and expletive-laden. Instead I’ll ask it here, somewhat rhetorically, to no one in particular, even though there may not be a real answer:

What…just WHAT on earth do you do when you can no longer stand living in a world that does this to people? That poisons them, tells them all their symptoms are in their heads, then leaves them to suffer alone? Sometimes I feel like I can’t take it anymore. It’s not even because I’m still suffering – I’m 6 years out and doing okay compared to the first 3 years. It’s living in this fucked up, shitty world all the time, having to watch people take FQs, not understanding even a fraction of the horror that awaits them if they get floxed. It’s worrying about people you love listening to their doctor’s bullshit medical propaganda instead of your sincere and heartfelt (not to mention VALID) warnings. Worrying about your kid growing up and buying into all of mainstream medicine’s bullshit, swallowing all the poison they’ll try to shove down his throat without question. I’m more worried about that than I am about his future drug and alcohol experimentation. How fucked up is that?

I almost feel like I need to be more direct when discussing FQs. Like, rudely direct. Nevermind the “FQs can cause permanent peripheral neuropathy and tendon damage.” Fuck that. That’s too easy to ignore, even with the word “permanent”. How about:




Which…that can apply to all drugs, not just FQs. The worst part about that statement is that it’s completely true, and also the most likely to be deemed sheer insanity by people living in blissful ignorance of the dark underbelly of the mainstream medical paradigm. And it’s yet another example of people with pharmaceutical-induced health issues knowing (and living) a truth the masses are not yet ready to hear. As a result, we get front row seats as people slowly wake up to the truth, usually by becoming poisoned themselves, or watching someone else get poisoned.

Why won’t people heed my warnings? And why can’t humans ever seem to learn anything unless we’re shocked by personal tragedy? I mean, I’d like to think that I would have been shocked into never taking a Fluoroquinolone drug had I encountered a floxed person in my healthy days, but who knows. I can’t exactly go back in time and prove it, can I?

Anyway…This post was inspired by a conversation with my mother, who is in the hospital right now halfway across the country. I cannot visit her, or do anything except talk on the phone with her, and she does not want to talk about FQs, and doesn’t know what kind of medication they put her on for the suspected UTI that turned out not to be a UTI, because she’s on so many meds already, and every time she mentions not wanting a FQ to a doctor they say, “Just because your daughter is sensitive to FQs doesn’t mean you will be.” She told me that and had to abruptly get off the phone, so I’m now sitting here all scared and disgusted and filled with rage. So, what, I guess I can look forward to the possibility of watching my mother get floxed from afar because doctors are ignorant and she is stubborn? Fine. Great. Looking forward to it, really. In fact, I’m looking so forward to just watching everyone’s health go down the tubes…people I care about, random strangers. Fuck it. We’re a poisoned, ailing population, stumbling around poisoning the planet, continuing to poison ourselves and each other to “treat” the ailments we’ve developed from being poisoned. The human race is disgusting.

Sorry. I know this post is negative. Usually I’m annoyingly optimistic, an idealistic, “silver lining” kind of person…to a fault, really…but I just can’t be that way all the time. And really, I wonder if it’s nothing but a defense mechanism, anyway – a way to soften the horrors of the world, trick myself into thinking it’s not that bad so I’ll stick around for the duration of my natural life without driving myself off a cliff prematurely.

Which brings me back to my original question about how people live in this world of horrors. How do we cope? I suppose this is a universal question which could apply to any adversity – not just the type of illness and insanity I’ve been subjected to. I guess the answer is to distract ourselves with entertainment, or thoughts of good in the world, or food, or drink, or whatever…whenever we can. I guess it’s human nature to gloss over pain as often as possible, just so we can continue to function. Which means, maybe I shouldn’t judge people who dismiss me, who can’t seem to wrap their heads around what happened to me. They probably can’t handle it, the same way I sometimes can’t – like today. Only, I don’t have the luxury of ignoring it the way some people to.

I wish I did, though. It’s a heavy burden sometimes, like being one of the select few who is privvy to a terrible secret, knowing we will have to watch from afar as the whole world slowly learns this secret the hard way. Like parenting…knowing you can’t protect your child from someday learning the world is goddamned difficult and full of pain, because he’s stubborn and doesn’t listen to you, and can only learn by stumbling along his own path until he’s shocked awake by whatever version of misery he encounters in his life.

Jesus. Happy Fucking New Year, huh? Again, sorry for the downer post.

Wait a minute. I think maybe I’ve found another answer to how to cope in this fucked up world besides distraction: feel the emotions for as long as they’re here, express them, and just let them run their course. Emotions don’t last forever; they wax and wane. I’m feeling the weight of fear and anger and sadness right now, but that doesn’t mean those emotions will be here when I wake up tomorrow morning. Even if they are, even if they last for weeks or months, they won’t ALWAYS plague me with the same intensity. I will learn to cope somehow – it’s just human nature. I learned that from being floxed, didn’t I? Yes, I did. I just need to remind myself occasionally, when life becomes too much. Which, it will…over and over again. But it’ll become good again, in some way or another. I forget that sometimes, too.

I’m going to go now and have myself a good cry, then try to mentally will my mother to please, please, for the love of god add “NO FLUOROQUINOLONES” to her medical chart. And then go cry some more, because I’m having a hard time coping with the world’s insanity on this particular day. Maybe tomorrow will be better.

My Country Western Song/Fucked Up Children’s Book

A few weeks ago I got a migraine and wrote the following:

You know those stereotypical country western songs in which some poor sap is down on his luck? Maybe his dog just died and his woman just left him, and his boss is getting him down – that kind of thing? I’m having one of those evenings, only substitute the dog and woman and boss with illness and other absurdities.

Let’s see, what are the elements to tonight’s country song?

Well, to set the stage, I was lazily researching school-related info for my kid online when I realized with dismay that I was getting a migraine. I haven’t had a migraine since around April, so I was pretty bummed out about it.

I’m not sure what brought this migraine on. My theory is either stress, the extra coffee I drank today, the apple I ate at lunch, dehydration, or the perfume my new coworker sprayed in the bathroom today. This may sound odd, but trust me – these are all potential migraine triggers for me.

I should note that I had/sort of still have MCS, that pesky condition (understatement of the year) in which a person reacts to various foods and low levels of chemicals in the environment. I used to be extremely ill because of MCS. I suffered acutely almost every single day for 3 years, with migraine being one of my main, most troublesome issues. One day I will write more about that whole ordeal, but not tonight. Tonight I’m writing about my fucked up country western song.

Here goes:

So, once I realized I had a migraine, I got depressed. Anytime my MCS status is relegated from “former problem” to “shit, this might still be a problem”, it fucks with me. I tried not to think about it, but I got depressed, then moved quickly into uncontrollable crying – a PTSD reaction to the horrid memories of those 3 years suffering with this unacknowledged medical condition. My fear and despair from those years just flooded back to me as the familiar vice grip of the migraine tightened its hold on my skull.

I composed myself and started doing these breathing exercises that help with MCS (long story). While doing the exercises I decided I needed to eat dinner, so I dried my face and began cooking a frozen fish fillet and zucchini. Then I discovered that the heating element to my oven was broken, so I had to use the broiler. Only, you’re not supposed to broil this fish, so I decided to use it just to heat the oven to an acceptable temperature. This meant I needed to cover the fish, but I realized I was out of foil. So I covered it with a cookie sheet, which ended up emitting a smoky, stale grease odor as it heated.

While this ridiculousness was going on, I decided to wash dishes. Because of my broken thumb, I wear a brace and glove while doing the dishes. I must have pressed too hard while scrubbing, because I felt a snap when the end of my thumbnail pressed against the brace. I then realized that my thumbnail was beginning the process of falling off. Super. The doctors told me it would happen, but the warnings didn’t render the event any less cringe-worthy.

So anyway, in the span of 30 minutes the following occurred: migraine, PTSD, broken oven, out of tinfoil, baking with broiler, smoky kitchen, thumbnail falling off. I actually laughed and wondered what on earth could possibly go wrong next, then begged the universe to leave that question unanswered.

So, that’s tonight’s country western song. It’s not really a song, though. Perhaps I should’ve used a different analogy, like from the children’s book If You Give a Mouse a Cookie. Have you heard of that book? It’s about a series of events that occurs after a person gives a mouse a cookie – a seemingly minor act which leads to more and more minor acts, eventually culminating in mayhem and total exhaustion for the frazzled giver of the cookie. That was my evening.

Here’s the “If You Give a Mouse a Cookie” version of my evening:

If you eat an entire honeycrisp apple at lunchtime, you’re probably going to get a migraine later. When the migraine begins, it’ll trigger your PTSD and you’ll begin to cry. While you’re crying, you’ll remember you need to eat dinner, so you’ll decide to bake yourself some fish. After turning on the oven, you’ll notice that it’s broken and decide to use the broiler instead. You’ll discover you’re out of tinfoil, so you’ll find an old cookie sheet to cover the fish. Then you’ll do the dishes while waiting for the fish to cook. While you’re doing the dishes, you’ll feel a snap on your thumb. When you realize the thumbnail is falling off your previously-injured thumb, you’ll notice the kitchen is beginning to smell. You’ll open the oven and a cloud of noxious fumes will rise from the cookie sheet and assault your senses. You’ll close the oven and leave the kitchen, pondering how to care for your dangling thumbnail, when the food timer will go off. Then you’ll eat dinner while composing a blog post. Writing will cause you to stay up too late, making your migraine worse. As your migraine worsens, it’ll trigger your PTSD again and you’ll begin to cry…again. You’ll give up and collapse in bed, vowing to finish the blog post some other time. When you finally resume writing, you’ll realize several weeks have passed with very little time to write. This will depress you, so you’ll shake your fist at the sky cursing the gods for giving you a passion you have so little time and energy for. But you still won’t write much, because it’s Saturday, and time to take your son to his annual birthday sushi buffet lunch. Hopefully your lunch won’t give you another migraine.

There. I think I’ll call it “If You Give a Floxie an Apple”. If I could illustrate, I’d make a cartoon out of it, or a small graphic novel or something. Do illustrations of migraines and thumbnails falling off and PTSD sound as awesome to you as they do to me?

My life is so ridiculous sometimes.

Pass the zinc, please.

I’m getting sick. Well, maybe. Like a good zinc cold product consumer, I started sucking on a lozenge at the first sign of illness – last night when the dull headache that crept in during the day never morphed into a migraine like I feared, but instead gave way to a crushing fatigue, and just a bunch of “off” sensations.

“Off” bodily sensations have become the norm for me post-flox, sometimes caused by ingesting a disagreeable food or substance, or breathing some chemical or whatever. Sometimes I wrack my brain trying to figure out what caused it, and sometimes I do…but sometimes it remains one of life’s mysteries.

Last night I realized this current “off” feeling meant I’m getting a cold. When I considered that my son has had a cold for the last 2 days and has likely left all manner of germs all over the place for me to touch and transfer to my own body, I put two and two together because I’m smart like that, and popped myself a nice zinc lozenge.

Now I’m at work continuing my zinc lozenge regime, hoping for the best, and hiding the fact that I’ve brought this possible illness into the workplace. I mean, am I contagious if I’m zinc lozenging the fuck out of the germs? I don’t know. But I’ve got to eat and pay bills, so I intend to grace my workplace with my germy presence and soldier through my workday for the duration of the illness, unless I become too physically weak to get out of bed.

I mean, I’ve had enough practice working through illness during those 2-3 years of near-daily, intense flox symptoms. Somehow (who knows how) I managed. I worked through neuropathy that left me with burning, tingling, and numbness in my limbs and face. I worked through pain that left my body feeling twisted up like a pretzel, and stabbed repeatedly in various muscles and joints. I worked through migraines that rendered my brain practically a vegetable, making my eyes feel crossed, my mental processes slowed to the point where I should have been huddled in the corner of the room drooling on myself. But I didn’t do that. I performed all of my work duties with miraculously few mistakes, all while smiling at people, trying to pretend I didn’t want to die every second of every day. After all, what would have been the use in complaining? Very few people believed I was suffering, anyway.

My point is, if I can handle that, I can handle working through this possible cold.

I feel it, too. Or rather, my body’s response to those little germy fuckers trying to invade my body. Guess what, germs? You can kiss my ass. Unlike days past when illness sensations would trigger PTSD from my floxing, I refuse to become stressed out over your possible presence. Who gives a shit if I’m sick? If I’m prescribed antibiotics that might fuck me up again? If I can’t take normal cold medicines for relief, or nap for hours and hours during the daytime to hasten recovery like normal, non-floxed, non-MCS people, because my nervous system is shot and medications trigger neuropathy flares? Who gives a fuck? This is nothing to get upset about.

I’m saying these things to remind my dumbass PTSD brain that acquiring the common cold is not the same as descending into the unrelenting hell of possibly permanent flox and MCS symptoms. Colds go away. Just think about ocean waves or some shit, and stop worrying.

Secondly, I’m reminding myself that I am strong. If you had told my younger self I would survive that flox/MCS hell, I never would have believed you. See, I thought for many years that I was weak. Frail. Physically and emotionally. Well, guess what? I am many things in life, but weak and frail I am not.

Also, I am well aware that most people in the world would consider this blog the ramblings of a neurotic person. Seriously – just considering my posts objectively, they do seem insane, like something out of a sci-fi movie.

“She thinks an antibiotic fucked up her DNA, and now she’s supposedly allergic to everything? What a nutjob.”

I know that’s what some people think of me, which used to bother me quite a bit. But you know what? It really doesn’t anymore. I don’t need anyone else to validate my adverse drug reaction, or my unacknowledged, invisible illnesses, or any single goddamn other thing that has happened to me the last 6 years..or ever. I know my own truth, which is all the validation I will ever need…EVER. Times infinity plus one, as little kids might say.

See, I’ve figured out that I’m strong enough to withstand people’s doubt. Yes, it hurts to have my experiences dismissed. It’s even downright traumatizing when doctors, the people in charge of my healthcare, do it. But there’s an aspect of their dismissal that can no longer touch me, because my wellbeing is no longer dependent on the approval of other people.

I don’t know why it ever was. I mean, I’ve spent my entire life feeling shunned, not fitting in with the vast majority of people. If an alien ship appears to retrieve my spirit when my body kicks the bucket someday, I will not be the slightest bit surprised.

My point? If I can survive a lifetime on the outskirts of life, the subject of people’s frequent ridicule, I can survive their disbelief in my experiences, and their erroneous judgments about my mental state. I don’t actually care anymore, because I’m strong enough to stand on my own. I guess that’s another unexpected gift my health issues brought me.

My goodness. Who knew that a simple cold virus could lead to giving myself a pep talk about inner strength? I guess I’m my own life coach now. My own foul-mouthed, sometimes snarky asshole life coach, but that’s okay – this style works for me. If you don’t like it, don’t ask me to be your life coach. I wouldn’t be good at it anyway, since I don’t like telling other people what to do. There would be a lot of, “I don’t know – you should just do what you want”, which seems a little wishy-washy for a life coach. But what do I know – I just started this gig today.

Anyway, I have to go because it’s time to dig out another zinc lozenge and get back to work. I hope the zinc helps. Just because I can handle having a cold without succumbing to the troubling, PTSD ghost of illness past, doesn’t mean I WANT to.

Last Will and Testament…or Something

(Wherein I refer to death-related topics as casually as I would refer to making sandwiches, all while cussing like a sailor. Don’t read if such things upset you.)

If I ever make a will like a responsible person, I’m putting some morbid shit in that thing.

Actually, I’m not thinking of a will – I’m thinking of something like an after-death plan. Is that something people do? I mean, people who wish to be cremated instead of embalmed and buried (as I do) probably should have a document stating their wishes, right? Is that part of a will? Or are wills just instructions on how to distribute people’s material and monetary accumulations to their loved ones? (For fuck’s sake, now here’s another Thing I Need to Google. I should probably do so before publishing this post, so as not to display my ignorant stream of consciousness for all to see, but I’m not going to.)

ANYWAY, I doubt I will have much to leave anyone besides the contents of a cluttered apartment resembling a slightly more aesthetically pleasing set of Sanford and Son. (Have fun sorting through this hoarder’s oasis, future recipient of my junk!) But I do have some things I’d like to happen upon my death.

First, as I mentioned, I would like to be cremated. I’ve told both my son and my boyfriend on numerous occasions, “Chemicals gave my body enough trouble while I was alive; I refuse to be pumped full of them when I die.” I realize I would no longer be adversely affected by chemicals as a dead person, but it’s the principle of the thing, okay?

Secondly, I would like my body to be examined for flox-related abnormalities. Specifically, I would like to be cut open in the places I specify and checked for torn or ruptured tendons and cartilage damage. I would like for someone to notice evidence of excessive wear, and wonder some version of the following: “Hmm…why does this sedentary, slug-like person have the joint and tendon damage of a lifelong marathon runner? That sure is odd.” And I can state in my will, or after-death plan, or whatever: “Because of Cipro. Nasty drug, huh?

Of course, if I do live until the ripe old age of 90 (god, I hope not), my tendon and joint destruction will probably just be blamed on age. UNLESS they resemble the tendons and joints of a 140-year-old instead of a 90-year-old – in which case, maybe someone will notice.

Who am I kidding? Even if I can have these things checked after I die, nothing will likely come of it. I’m just imagining a scenario in which I have the last word in an argument with all the naysayers in my life who refused to believe that Cipro harmed me. I mean, what would be the point if I’m dead? And I’m increasingly wondering what the point is while I’m alive. I find myself caring less and less as time goes on. Don’t believe me? Fine. Take all the prescribed Fluoroquinolone drugs you wish, you fictitious amalgam of all the skeptics in the entire world. Take a crapload of FQs and continue to think I’m crazy, because of course you’ll be one of the lucky ones who can take FQs without adverse effects. I don’t even care anymore. (Actually, I do care, but I’m feeling too cranky and cynical to care out loud right now, so I’m pretending I don’t care.)

By the way, all of today’s cheery thoughts were brought to you by this other, preceding thought, which went something like this: “I’m glad I’m somewhat healthy again, but really wish my body felt as young as my physical age.”

They were also prompted by this thought: “My fucking neighbors woke me up at 7:00 on a Saturday again…don’t they EVER sleep in?” I mean, I had grand plans to spend the morning with a delicious cup of coffee, writing a profound essay about the unexpected gifts of illness, or some crap like that. Instead, my coffee gave me a stomachache and didn’t even wake me up. As a result, I am far too cranky to ponder anything that doesn’t allow me the freedom to express the snarky, irritable side of my personality at this moment. So, since nothing profound is coming out of this brain of mine today, I said to myself, “I know…I’ll write about what I want to happen when I die!”

Oh, also? This is unrelated to anything in this entry, but a few weeks ago I bought an awesome pair of boots online at a huge discount – something I NEVER do, but justified it as an early birthday present to myself. Well, I opened the package today, and they’re too small, and I can’t return them. So instead of enjoying this rare treat, I’ve acquired a task and an errand: listing them on ebay and going to the post office to mail them once they’ve sold. I have an unreasonable hatred of mailing packages. Like, to a ridiculous degree. I don’t even know why. Or maybe I do: it’s because mailing things confuses me. I have no idea what to charge the ebay buyer for postage in advance, and no idea how to properly wrap and package this stupid box. Because of this, the boots are probably going to sit in the corner of my Sanford and Son apartment for god knows how long, mocking me and collecting dust. Maybe I should just put them in my will. Or my after-death plan. Or whatever. It’ll go like this:

  1. Cremate my body. No chemicals!
  2. Check my body for Cipro damage. (Wait, that should probably go first. Reverse the first two entries.)
  3. Give this pair of awesome, vintage boots to some lucky recipient who will either love the crap out of them or not mind going to the post office to mail them to someone else.

See, my needs are pretty simple. At least, my after-death needs are. I wish I could say the same for my pre-death (otherwise known as life) needs.

Side note: I have no idea how someone this confused and stressed out over mailing a package functions as an even remotely independent adult. Let’s just file this under “Mysteries of Life”, shall we?

Now, if you’ll excuse me, I’m going to attempt to salvage the remainder of this day in spite of my desire to complain excessively and throw things through windows. Wish me luck!

Our Gift to You

The Great Controversy book, with bonus shot of my injured thumb.

The Great Controversy book, with bonus shot of my injured thumb.


Several months ago I received this book in the mail for free – a generous deed for the good of humanity, I presume, as apparently mine is one of many souls in the world currently in need of saving. Rather than adding another piece of trash to the landfill, or donating the 500th copy to Goodwill, I decided this book was a collage-maker’s dream with its strange and unique phrases. So I kept it, and began removing these choice phrases from the confines of the pages with my trusty exacto knife. Kind of like excising tumors, only in reverse: removing the good parts from the cancerous mass. After two or three hours, an inadvertent poem formed.

Note: no offense intended to any religious folk out there. I really don’t care what beliefs people adopt in order to ease the harshness of their earthly lives (most people would deem my own beliefs utterly wacky, I imagine). I’m just not into the hellfire and damnation variety of religious propaganda. Or proselytizing – even passively, as with a book appearing in my mailbox. When that happens, I’m going to make collages and/or cut-up poetry out of it. I’m sorry, but that’s just how it’s going to be.

Our Gift to You

Splendid churches
infected with
finite minds
choosing darkness…

What indignation
intermingled with
the uplifting of humanity!

What must be the fruit of
independent thought
that are in the graves!

The lightning flashes,
leaving the darkness
more dense…

Anticipating the loneliness,
when the luxury of the world
becomes inadequate.

(This detestable rottenness
in their pursuit of pleasure.)

Time was short
to little groups gathered,
in costly and fashionable attire,
for less worthy purposes.

and did they know it?
and did they feel it?

The discord which
would have manifested
its own peculiar dress
to the whole universe,
from fear rather than from love.

I desire to live!
cries the lost soul
darkened with the smoke,
the terrible destruction of life.

(So strong was this feeling
to enter the divine.)

Should we be surprised that
his heart was broken?
Blotted from existence
in the midst of
the falsehood uttered
for the good of the human mind.

The influence of
a higher state of existence
filled with love:
the souls of all men
would have lived forever,
away into the bliss.

Spirituality is called
the serene joy,
an inspiration,
a love of the world
(the whole wicked world).

The same spirit that
would often linger
with the masterpieces
of the seasons,
to the blue skies,
the entire universe,
the whole state of existence…

These are everywhere,
these writings of love.

So precious a talent
in their true light,
can alone comprehend
the perplexity of the universe.

Motivation, or lack thereof. Also: enough with the fear, already.

Last night I posted the following to my parenting message board (I’ve been online friends with this unbelievably awesome group of moms for over 10 years now) in hopes of gaining some insight, or even just some commiseration for an issue that’s been plaguing me lately:

I am so annoyed with myself. I work like a fucking dog all week, and often fantasize about writing and doing art while I’m toiling away. I get so inspired in the middle of working, driving, or any other highly inconvenient time, yet when I’m home for a couple of blissful hours at night or on a weekend, I have ZERO motivation. How will I ever find any creative fulfillment this way? Actually, it’s not just that – I am unmotivated about looking for a new job, filling out paperwork, and other things which are necessary for survival and/or self-improvement. Yet, I’m super motivated during times when I can’t do anything about it. Is this a psychological problem? On a subconscious level, am I trying to ensure that I remain in this rut forever because it’s familiar, and thus comfortable here? Or maybe I’m just too tired when I do get the chance to relax, so all I feel like doing is the bare minimum, or vegging out. Anyone have this problem and/or have tips to overcome it? I feel like I’m wasting my life.
Coincidentally, someone else had just posted something very similar in the group. She was advised to create her art when she could, whether or not she was motivated or inspired. She was also told that inspiration may come after she’s started, but regardless, it’s important to show up for this creative time on a frequent basis. This was good advice, and helpful for me, too.

Someone also suggested she ask herself whether any underlying fears were preventing her from creating her art, such as fear of failure, fear of success, or fear of not being good enough.


My internal bells went off as soon as I read this. Yes, I am often too tired and just outright fried to work on anything creative when I have the time to do so. That is valid. However, I also have the underlying fears mentioned above. And I think my initial insight was correct – that maybe a tiny part of me is comfortable in my rut, so I have difficulty doing things that might alter the state of existence I’ve become accustomed to, as sorry as that state is sometimes.

Finding comfort in my rut is unacceptable, and I must remedy this. As I said in a previous entry, I did not claw my way back from bizarre, isolating illnesses and despair only to exist in mediocrity for the rest of my life, too afraid to live. I begged for the chance to live again; it’s time to take it.

So, fuck the fear. I’m going to spend more time doing the things I love most: art and writing. Who cares if I’m no good? Who cares if I fail? Who cares if I succeed? If surviving illness has proven anything, it’s that I can handle things. I can handle adversity, and I can handle life.

I dont believe I came to this beautiful, insane planet just to sit on the sidelines biting my nails, watching other people live their lives, while too afraid to live my own. But my illness experience taught me that’s exactly what I’ve always done. When I was ill with MCS and I couldn’t participate in life, I felt like I was watching others with envy from afar. After all, that couldn’t be me. I couldn’t do the things everyone else did because our modern world with its ubiquitous chemicals made me extraordinarily ill. But I SO wanted to participate. Life felt like a cruel joke.

Looking deeper, I realized I had always been a mere observer in life – too afraid to participate, even though I could have participated. In this way, I wasted 30 years of my life. Well, it wasn’t a waste – it was the journey that led me to become the person I am, and all that crap. But regardless, I’m aware of the opportunities I missed throughout my life because of my fear of living. It’s time to show up for life now, in spite of the fear. It’s time to find the opportunities that scare me and dive in. I owe it to myself. I’ve survived too much already to just squander my second chance at living.

I realize I’ve already written about recognizing my underlying fears through processing my illness, but this recent insight has driven home just how pervasive these fears are in my life. I didn’t realize a simple lack of motivation could be rooted in fear. I’m sick of this shit.

So, I’ve got a message for the universe: I’m ready. I’m ready to show up for opportunities that scare me, and try to succeed even though I may fail. I’m ready to live an authentic life, in spite of the uncertainty and upheaval such a radical restructuring of my life would surely entail. Why? Because I’m worth it. My life is worth it. That’s why. That’s the only reason necessary, really. Every other reason is secondary to this vital truth which took decades for me to learn. But that’s okay. Better late than never, right? After all, there’s nothing wrong with being a late bloomer.

Also? Maybe I need to stop worrying so much, because maybe I’m exactly where I need to be at this stage of my life. Perhaps my years of fear and adversity provided the experiences I needed to finally show up for life. Maybe learning what I don’t want was a necessary factor in determining what I DO want, and a catalyst to push me forward into action. Maybe there’s actually a method to the madness we call life.

I must note that writing this post about my lack of motivation has paradoxically motivated me. I guess I should thank my lack of motivation for inadvertently uplifting me. Or thank myself. After all, I’m the one who decided to delve into this annoying issue rather than succumb to it, vegging out in front of crappy TV, shoving fistfuls of crappy food into my mouth, feeling sorry for myself. Go, me!

Actually, now that I’ve taken this time to write, and thus can breathe again, I think I will go veg out to crappy TV with those fistfuls of crappy food. But I’m not going to feel sorry for myself – I’m simply hungry.

So as not to end this post with a reference to my gluttony, here is a motivating post about fear of success. Good advice for us all, I think.

Thoughts are Bad, M’kay?

So, that last entry about my faulty thumbs? There’s a little more to that story.

I mentioned that I had begun writing about my thumb woes months ago but couldn’t manage to finish the post. But it was constantly on my mind. Every day I thought, “My thumbs hurt. I need to finish that blog post.” Every single day. Then, about a month ago on my way home from work, I added this thought: “I need to get my mind off this recurring sinus issue I’m having, because it’s stressing me out.”

Approximately 10 minutes later I exited my car and slammed my right thumb in my car door. Just slammed it right the fuck in the door. Then it stayed there as I scrambled to find my keys and unlock the door in order to free it. Then I almost passed out. Then I unloaded my groceries and drove myself to urgent care.

Long story short? My thumb is broken now. Hairline fracture, but still. A month later and I still can’t use it much, and need to keep it dry because of the disgusting wound right under my nail, which is bruised and will probably fall off eventually.

Now I REALLY can’t do collages now. Or write or draw. Isn’t that some shit?

You know what else? I’ll take you through some of the thoughts such an injury creates in a person with my fucked up health history:

“Will the doctor try to give me Cipro?”
“Will I be forced to educate a disbelieving and dismissive doctor about FQ adverse reactions?”
“I can’t mention MCS. I’ll have to downplay that one.”
“I’m sick as fuck of downplaying my health issues because modern medicine has not caught up to the reality of environmental illness.”
“OMG, I might have to downplay it for the rest of my life…which could potentially mean decades.”
“This is bullshit.”
“I feel depressed and alone.”

I did downplay my health issues at urgent care, refusing a tetanus shot because of my MCS, without outright saying I had MCS. Instead, I told the doctor that I have peripheral neuropathy from my adverse reaction to Cipro, which worsened the last time I received a shot (lidocaine). Therefore, I did not want a tetanus shot. In reality, the preservatives and/or immune system activation involved in such a shot has the potential to cause a huge backslide in my health, not just with increased peripheral neuropathy, but with increased chemical sensitivities. I cannot deal with that level of illness again. I haven’t even been able to write much about it, because of my residual PTSD.

True to form, the doctor scoffed, looked at me incredulously, and said, “You don’t want to get lockjaw, do you?” I said no, but I don’t want my peripheral neuropathy to flare, either. I’m sure he thought I was insane. From his perspective, I’m sure I looked insane. No hard feelings, doctor, in spite of you subsequently rushing me out of the office for “refusing treatment”, and in spite of your lack of awareness that FQs can cause permanent peripheral neuropathy. You know what else? I was refusing a tetanus shot, but I actually did want his other treatment recommendations. But because I felt rushed and mildly shamed, I didn’t communicate any of this. I just cradled my thumb and let a nurse show me the door.

I spent the next few days paranoid about getting tetanus. I began using homeopathic remedies, but since that did not assuage my fears, I decided to visit my natural-leaning MD to see if they had preservative-free tetanus shots. Sure enough, they did. Well, “as preservative-free as possible”, as he put it. Good enough for me. I got the shot and went back to work.

Then I spent the following week paranoid I was reacting to the shot because I was fatigued and my arm developed a large, red, warm, itchy spot. (That’s the hard part of surviving MCS – not knowing whether a side effect is normal, or indicative of an adverse reaction which will result in worsening health.) Symptoms gradually resolved, though. No worsening of chemical sensitivities have been noted so far. Now I’m paranoid about my thumb developing an infection, but trying to refrain from running to the doctor again.

The moral of this story, people, is a few things: A little bit “be careful what you wish for”, yes. Because I wished for a distraction from my sinuses and ended up with a broken thumb. But also? Watch your thoughts. Every day with the “My thumbs hurt.” Every damn day. And look: I attracted even more thumb pain into my life!  (I’m kind of kidding, though a tiny part of me wonders if there is any law of attraction truth at work here. Yes, I am one of those people. Feel free to internally mock me, or stop reading this blog.)

I could use this opportunity to advocate positive thinking, but I’m feeling too cynical right now. Instead, I wish I could stop thinking altogether. Forget any kind of thinking, both positive and negative, because thoughts are bad. Thoughts are are terrible foes that make things happen. They break your thumbs, make you feel things, and keep you awake in the night.

One final realization: People with MCS (and FQ Toxicity) naturally develop a degree of paranoia because the illness often involves intense physical reactions to relatively benign substances. As such, any given chemical, or food, or prescription drug has the potential to cause misery and a worsening of overall health, requiring extreme diligence on the part of the sufferer in order to protect his or her health. However, mainstream medicine views this diligence as paranoia, and therefore a cause rather than an effect of the illness. They do not recognize the illness’s physiological roots, or that the resulting paranoia is a necessary aspect of survival – especially in a world where disbelief in the illness runs rampant. Mainstream medicine’s misconception of MCS actually forces sufferers to exercise greater caution in their healthcare options due to lack of external support and acknowledgement, making them appear all the more paranoid.

What a vicious circle, the irony of which has been duly noted.

Now, I would like to stop thinking about this vicious circle and carry on with my day. But please, universe, don’t break any more of my fingers or thumbs. I’ll find my own distractions from these unpleasant thoughts, thank you very much. Also? I enjoy my ability to think, so please don’t take my thoughts away just because I complained about them. Okay? Okay.

Nostalgia and Realizations and Limbo

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.