An Open Letter to Psoriasis

Dear Psoriasis,

Hate you. Sorry not sorry.

I thought we had a good thing going. I spent the last 28 years primarily ignoring you, and you me. Sometimes, I might have complained about you to the few people outside of my family that knew about you, and occasionally visited a few doctors to try and make you leave. But mostly, I just went through my life hiding you when I had to, and you coming and going as you pleased.

And that seemed to work out pretty okay for us both. I never charged you rent, and you always had a place to live with lots of yummy scalp food to chew on. Up until quite recently, I could cover you with my thick hair or layers of concealer, and you would throw obnoxious, but relatively short lived hissy fits before going on your merry way.

That said, I don't appreciate your emergence on my face, as it was not a part of a rental agreement. The polka dots speckling my eyebrows, or the somewhat pimply breakout of psoriasis on my chin and neck are not welcome.

Thanks for trying to hide in the freckles, though. 

Whoot, I love looking like I'm thirteen again. 

But not even inflaming my face was enough. Nope, now you're causing constant pain. From swollen, purple joints in my fingers, to popping and cracking joints whenever I make even the smallest of movements, to hips that won't just stay in place - my body is teeming with you. And now you have destroyed my back! The pain robs me of my sleep, confines me to just a few pairs of shoes to alleviate the back pain, stole all the hard-earned flexibility in my legs, and turned my strong core into a sad and weak mess. Thanks to you, I am completely overrun with psoriatic arthritis, just one more exciting addition to the psoriasis of the last 28 years.

Here's looking at you, jerk.

With at least one referral pending from my neurologist, and pain management injections on the horizon, I want to thank you for hammering one more nail into my coffin. And even though this chronic condition is much less insidious and much more controllable - I am tired of constantly having to battle for health. I deserve a real shot, and I will have my life. You might have taken one round, but I am going to win this war.

Psoriatic arthritis; you can screw off - your lease is up.

With love,

The Girl Who Kicked Your Butt

Eating Shit

"For someone in search of truth nothing is off limits." - Plant Pure Nation

So far in writing this blog, I have done my best to chronicle my journey after the onset of my still undiagnosed seizure disorder. I have recorded how I contended with hardcore medications, dealt with crippling migraines, faced the loss of independence resulting from the volatility of my seizures, and articulated the "unsettled feeling" of still not feeling better. Up until this point, the lack of connection to my health and the complete loss of control that is directly connected to a near legacy of illness, has completely dictated my life. And I'm still not better. 

What you don't know is that my history of illness is pervasive. The seizure disorder and frequent migraines are tiny portraits of a much larger issue. Kidney disease, in particular kidney stones, is another ailment I struggle with quite often. In fact, I am in the process of passing a kidney stone right now. Furthermore, crippling back pain, locking and popping joints, asthma, allergies, psoriasis, ovarian cysts, ulcerative colitis, and eczema are also significant parts of my story. 

I am sick, and I cannot deny that I have a part to play in perpetuating my illness. This world is toxic, and I am simply perpetuating and contributing to that toxicity. There are things about our lives that are quite difficult to change - I have to face that I'll likely hold a desk job for most of my life, that we have very little time or energy after we work long work weeks, that certain emotional and environmental stressors cannot simply just go away because we will them to. But there are things about my life that I CAN change, and that I also need to change.

Everyone knows that the food we eat is shit. We can't argue that processed, heavily sweetened, and salt-saturated foods are the building blocks for a healthy body. They are, however, the building blocks to manipulate and mislead Americans into buying into a diseased food industry that prioritizes revenue over health. In fact, we all know that the food industry works to keep us addicted to shit food, and lies to us with phony messaging that keeps our heads firmly in the sand.

We all know this. Individuals that are outspoken against the American diet of processed foods and animal proteins are labelled and dismissed. Being an advocate for your own health makes you an enemy, because you draw attention to mistakes people are unwilling to see. I've gotten into fights with family members, partners, and friends over this truth. I've been called names, indicted for being judgmental, and dismissed for being naive. The food industry wants those that see through the BS to feel disempowered and stay silent, and culturally, those that "stay in line" are rewarded.

But culturally, we are all fat AND starving, myself included. Our food is high in calories and low in nutrition. I am positive I don't eat enough vegetables, and that I am flushing toxins and chemicals throughout my body. Nutritionally, our bodies are fucked. I am the perfect example. I can admit it, and now I'm going to try and do something about it. I'm going to eliminate processed food. I am already a vegetarian, but I am going to get rid of my overly processed soy, start eating WAY more vegetables and fruits, be active about eating good proteins and fats, and stop eating poisonous prepared foods. I am going to seek out more local and organic food, start supplementing my diet with vitamins and minerals, and start practicing yoga again. It's going to be hard. But not any harder than passing a kidney stone, and DAMN am I tired of those.

Maybe all the great documentaries on plant-based diets are wrong. Maybe I'm being snowed by Netflix, and am so desperate to feel better that I'm an easy target. But I honestly can't believe that not eating crap will do anything but improve my quality of life. Maybe I'll be hungry, maybe I'll be ridiculed, maybe I'll be an inconvenience. But maybe I'll succeed, and maybe I will finally get my life and health back. And that would be worth all the rest of it. 

Losing It

Welp, in this week's record of the social experiment that I call life, let me drop another shitstorm in your lap. After being blessed with a kickass job that I adore for the last two months, spending my healthy days  immersed in challenging and fun work, while surrounded by incredibly cool and intelligent coworkers; I was suddenly (at least to me) laid off. In perhaps the most considerate and kind way possible, I was given the difficult news by my boss, who did her very best to soften the blow as I did my very best not to start bawling as I packed up my personal items.

Like Adele said, "shit happens". And getting laid off is shit, especially when you can't hide behind anger as you try and cope with the sadness. But all I feel is sadness - I understand how the industry works, and that the last one in is the first one to leave. I'm honestly not mad at all; I get why it happened, and don't blame anyone for it. I'm just profoundly disappointed that I didn't have the chance to grow in the company, to fall even more in love with the work, and to really sink my teeth into quickbooks and web design. Also, I am going to miss the hell out of my coworkers.

Of course, the rest of my life persists in limbo. I don't know what will happen with my health, and I don't know how my next job will handle my illness. I know that, after sitting at home for the last two days (cycling in and out of self-pity), that I HAVE to work. Staying at home and collecting disability and unemployment may be a choice I have, but it cannot be the answer. I have to be able to put my brainstuff to use, or I will go nuts. 

And I know that my skills and experience can speak for me during future interviews. But inevitably, I will have to explain myself again, and deal with the possibility of a seizure at a brand new job, surrounded by brand new people. I hate the thought of having to answer for a medical condition that I struggle to be able to explain, and that I don't understand myself. I don't want to have to tell someone that there's something wrong with me, but I can't absolutely confirm what it is. It's bad enough to have to feel and deal with those things myself, it's entirely different to have to communicate them to strangers.

But my health is getting better, and I suppose I am lucky for it. Ironically, the last seizure I had was a very scary one on tuesday night, but I haven't had anything since. This makes me feel optimistic, since both my headaches and seizures are remarkably less frequent, suggesting a possible tapering off that might allow me to continue to lead a somewhat normal life.

 But having to work AND GO TO WORK with a chronic and unpredictable illness is incredibly challenging. I have been trying to figure out a way to successfully negotiate the demands of work with the demands of my illness for months, and I thought I was making pretty good progress. But now, having to start all over again and find a new job, I feel like all the progress I made is nonexistent. Beginning over again is a formidable challenge, and one that I have no choice but to take on, if for nothing else than to save myself from going completely insane (and taking the cat to crazy town with me).

What Comes Next

"In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven." - Matthew 5:16

When you suffer from a chronic illness, it can be a terrible temptation to live constantly in the moment. In fact, if your illness causes chronic pain, you find yourself trapped in the present and always looking towards an uncertain (but hopefully less painful) future. This feeling becomes even more profound when you're in diagnosis limbo; still awaiting answers, clarification, and a treatment plan that exchanges reactionary solutions with preventative treatment.

But it's so crucially important that we all keep looking forward, focusing our gaze on the ways in which we can maintain our sense of agency and courage while helping others achieve that same sense of self. In my case, my wedding proved a fruitful opportunity to reflect on this idea. It's always been important to me to try and make the world a better place, and chronic illness reinforces this value - what about the people that suffer in silence, that don't have access to quality treatment, that don't have two wonderful families and one wonderful husband to support them?

Thomas is my rock, and I am blessed beyond compare to know that I can always count on him to ride into my disasters on his white horse and save the day.  I also know that Thomas and I both share this important value of "giving back", and that together, we could make a real difference in people's lives.

So, we decided to begin our marriage by giving back. Instead of forcing tacky or stupid wedding favors on our guests, we decided to make a $3 donation for every gift that attended our wedding to the Epilepsy Society of Northeastern, NY. While the jury is still out on whether or not I have epilepsy, or just a seizure disorder, it was important for us to select a local charity that helps individuals facing the same struggles that Thomas and I are facing.

Which brings me, ever so slowly, to the point of this posting - in our struggle with chronic illness, pain, tragedy, etc, we must never forget that we are called upon to make this world better. Knowing our own pain can act as an impetus for action, rather than constantly stalling it, is a powerful feeling. In fact, I know that I want to dedicate my professional life to starting my own nonprofit, one that allows individuals suffering from neurological AND mental illnesses the opportunity to use self-expression and alternative therapies to rediscover their own sense of Agency, and become whole individuals again. I hope to enroll in a MPA program at Marist College in the fall to start this process, and feel confident that I will develop the skills and amass the knowledge I need to begin this journey.

On the heels of my marriage, it is easy to love my fellow human. I know it won't always be so easy because I won't always be in the embrace of newly-wed bliss. But I found a partner that will always remind me of what's really important in life, and be there to help uplift and support others right next to me.

Running Interference

Bob and his friends (see below for information about Bob).

Imagine, sitting in a windowless, basement office. Your fingers are swiftly tapping on the muted keys of the Macbook as it glows an effervescent blue color. The office dehumidifier hums in the background as it tries to maintain the integrity of the oxygen in the air. Your coworkers tap in a disharmonious rhythm on their own laptops. And the fake fluorescent light high on the wall seems to pulsate blocks of bright, white light, as do the hanging lamps scattered across the office. Your desk lamp is pointed down, only turned on to give the appearance of being non-vampiric, because the yellow light is growing increasingly toxic to your current condition.

As you stare at the screen, blinking when the white dialogue box becomes too bright, you notice Bob. Bob is what you've named the floater in your eyes , the one that seems to visit more and more often, even after you begin a new course of medication. And Bob isn't going away today, neither is the nausea, the acute pain produced by any sound, and the pulsating, glowing lights. Amplifying the migraine with aura is the Percocet meant to relieve the pain. The aura intensifies as the migraine persists - the tingling in my left palm eventually leads to total numbness.

More About Migraines with Auras

Imagine being me right now. I am tired after drinking a large latte full of life-saving caffeine. I am nauseous after eating a small TV dinner, and have spent the last several days struggling to eat even small amounts of food. I am unable to shift my point of vision to the left or right without feeling pain in my eyes that radiates across my entire scalp. I look straight ahead, unable to shake off the eerie feeling of paranoia that seems to accompany my migraines.

And this is the bodily environment in which I am expected to complete difficult, new, and growing tasks at the job I've held for a little over a month. Unable to work from home, I feel the presence of my coworkers sharply - and try to appear as healthy and well as possible. I struggle to match their levels of productivity, or at the very least, be competitive. But the throbbing pain, which offers brief glimpses of reprieve as a cruel tease, refuses to be ignored. So, I spend my workdays running interference between the person I truly am and the person I need to appear to be. 

My saving Grace, a gel-beaded eye mask - served frozen, no ice.

I have lost count of how many days in a row I have had a migraine, but it has certainly surpassed a week. It probably began prior to my hospitalization, and certainly shows no signs of letting up. Part of me feels that I shouldn't have to work so hard to mask the intensity of the pain, but it is also scarcely appropriate to lie in the darkness under my desk. So I brace for each impact of the migraine, as I try to complete my work each day. 

Your brain on an aura. 

I don't know how people with chronic migraines are able to raise children, how they are able to run businesses, how they are able to stay in shape and remain active. I don't know how migraine sufferers can hold down jobs. I don't understand how these people live beyond, or even in spite of, the fear of the next migraine. And yet, like myself, I know that people are able to do all of these things as they live with migraines, working through several treatments that don't work until eventually/inevitably, they find something that works.

THIS CLOSE. 

Those people, the ones right next to you, might not look like they have all of this energy whirling around in their head - but their are people that are suffering, and they are doing so in secret. I hope that more people treat the people in their lives with empathy, compassion, and kindness - because you really never know someone else's struggle. 

The Reign of the Migraine

When I was three years old, I remember vividly my first migraine. It may seem strange that a three-year old could remember something so acutely, since memory is still forming at that age. But I remember so truly the deep despair, the confusion over a horrific sensation I failed to understand or articulate, and the fear that the pain would never relent. In between groans of agony and furrowed eyebrows, I remember asking my mother if I was dying, even though I didn't really know what it meant to die, I just knew that it was the worst thing that could happen to a person, and this certainly met those standards. As it is with migraines, I vomited, wept, and slept; a process which took hours to complete. I woke up anew, migraine-free, but burdened with a condition that would plague me for the rest of my life.

SAME GOES FOR ASPIRIN, ADVIL, ALEVE, ETC. JUST NO. 

Fast forward to today. After years and years and years of suffering, my migraines are more volatile than ever. I've moved from the trusted OTC remedy Excedrin, which sustained me for most of my life, to Fioricet, which has a moderate success rate, to Percocet, which sometimes ends the migraine and sometimes amplifies it. I've failed at two preventative remedies, Imitrex and Topamax, as I was allergic to both. Now, as I embark on a new treatment schedule, which will eventually include Botox, I feel slightly more in control of the migraines as they continue to wreak havoc on my life.

Couldn't see "Star Wars" because movie theatres can trigger seizures. #irony

I could attempt to dictate what it feels like to have a real migraine. I could try to articulate the physical and psychological hell the sufferer experiences as they wait for it all to pass, praying that the medication works. And the battle with chronic migraines is never-ending, unless you consider brief, medication-induced reprieves some kind of end. And yet, society treats this illness with the same levity as period cramps, or acne (both are serious conditions, but neither one can cause blindness, profuse vomiting, or pain that resists explanation).

For whatever reason, Migraines have failed to strike much fear, empathy, or compassion into the hearts of those who are living or dealing with a sufferer. Calling out of work with a migraine marks you as weak, and is immediately deemed suspicious. Canceling plans make you a bitch, not someone with a chronic medical condition. Living for days in a darkened room makes you a depressed recluse, not a physically ill person. Migraine sufferers are expected to live in pain, while simultaneously conducting business as usual - a feat any sufferer knows is nearly impossible, even with medication. 

Needles, everywhere.

To be willing to inject Botulism into your head positions someone as desperate. The idea frightens and sickens me, and somehow, I cannot WAIT until March - when I will have health insurance that will cover the procedures. And truthfully, I would eat raw, stinking cow dung if it came with the promise that I would not be attacked with a migraines. But medications have a dubious success rate, and my body is so ravaged by the pain that it converts it into seizures. I can literally NOT handle the pain. 

This post may seem to ramble, but the message is this: Migraines are real, chronic, devastating, legitimate, physical illnesses. Those that suffer from migraines should not also have to suffer the stigma that comes along with them; they should not be branded as weak, attention-seeking, or crazy. They should be respected for the strength it takes to move forward in life being shadowed by the presence of pain, and supported by those that approach them with understanding and support. I am lucky in that many people in my life understand and support me, and unlucky that their support comes from first-hand experience. 

To Queen Migraine, we are all just humble servants. And one day, if you're lucky enough to live without them, she will find a new servant as a plaything, and you will wish you had been more compassionate and understanding. But, for those of us that fight to live life under her sovereignty, we will be there to help you make sense of it. 

Checking Out

"The greatest evil is physical pain." - Saint Augustine

From my best girls, Courtney and Ginger Spice.

After four days in the hospital, I was finally released. And spent yesterday shuffling to my neurologist's office, and dealing with yet another brain-curdling migraine, that resulted in yet another seizure. I'm spending the next two days in my bed, trying to recover from my hospital stay, and reconstruct my brain to a somewhat functional level of consciousness (no LOL's, please).

With a nursemaid like this, who could be sick. Really.

But let me finish my hospitalization story. After many simple partial and absence seizures, the epileptologist, Dr. Christos, came to explain the results of the EEG. For the millionth time, the results showed no evidence of recognizable physical changes (hence, the problem in my brain is not electrical). But that itself may not be entirely true, says Dr. Jesus (with long hair and a name like Christos, it was inevitable). The grand mal seizures were not captured on the EEG, so it is possible that I am having both non-epileptic AND epileptic seizures (more about that coming up). 

But in the absence of physical evidence, I was preliminarily diagnosed with Psychogenic Non-Epileptic Seizure Disorder (PNES), a condition where your body converts physical or psychological pain into seizure activity. In my case, my continued and unrelenting migraines have pushed my brain "over the edge", to the point where it can no longer come to terms with the pain and just wigs out. Furthermore, the onset of PNES often coincides with two things: an epileptic seizure in childhood (like the seizure I had when I was five), and a recent traumatic event (like my parent's divorce). So, #nailedit.

But I got to GO HOME. Amazing. I was able to shower, change my underwear, lay in my own bed, and resume some kind of normal life. Of course, the following day (wednesday), I had to see the seizure specialist at my neurologist's office to begin a treatment plan, but with a clean head of hair and an operable diagnosis, I was feeling BETTER.

Before, covered in heart monitor welts and bandages. 

After, with clean everything. 

So, wednesday brought my visit to the quirky, but wonderful seizure specialist. She confirmed a probable diagnosis of PNES, but is concerned that the lack of grand-mal seizures captured by the last EEG doesn't rule out Epilepsy. So, two days before my wedding, I get to have electrodes put back on my head to try and have a big, big, seizure. 

Dirty hair again. 

But, in the meantime, the problem is being attacked by something other than heavy narcotics that have a tendency to create migraines that are even worse than the ones they're supposed to treat. I am on a preventative medication, Maxalt (also known as rizatriptan), and will continue on Kepra until there is evidence of epilepsy (or not). I am also going to start a botox regiment when my insurance will cover it, so I stay forever young, and to help the chronic migraines. Both epileptologists suggest that by controlling the migraines, I will have a much better chance of controlling the seizures.

And that's where we are today. Oh, and never let a smooth-talking nurse talk you into the flu shot when you're down and out, because you will definitely get the flu. So, cheers to adjusting to new medications while having the pseudo flu. Swell times.

Here's more info on what I maybe, possibly have.