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.

Admitted: Part 2

"There are things in that wallpaper that nobody knows about me but me". 

The Yellow Wallpaper

Well, I'm here - my room with a view (of an enormous parking lot, and a highway, albeit). "Welcome to 4 South" reads my white board in Room 4417, which I share with only Nova (my new pink teddy bear), and my video EEG machine. Finding out that I have my own room was like finding out that I didn't have a third roommate assigned to my dorm room in college, or like finding a unicorn. 

Everyone has been SUPER wonderful, and super nice here; even the nurses in the jammed packed ER. But my nurses in 4-South have been the bomb. My evening nurse yesterday watched a little of the PBS nature documentary with Thomas and I after my first seizure of the evening, and rubbed my hand as she slowly injected me with the Ativan, so I didn't zonk out into "la la land." My morning nurse was so compassionate when she witnessed my second seizure early this morning, even while she looked a bit stunned when I "woke up". My daytime nurse hauls ass whenever I call her on my remote (but I feel a bit bad for her as she always looks a very scared as she walks in) and was nice enough to hold all of my equipment as I changed my clothes in the bathroom, and listen to me ramble about my wedding. Speaking of equipment...

Tres, tres chic.

Tres, tres me.

No, I did not hit my head. Yes, I am making a fashion statement. But more importantly, I am being recorded all the time, both my brain and myself, via video EEG. I have never seen anything cooler than this piece of equipment, and am relieved to have it applied this a.m. (since the storm last night might have delayed it's application, since the neurologist comes up from NYC to perform the tests). So we now have movement in a forward direction, and I get to watch my brain (even though it's behaving now). 

And I will have visitors soon, which is really exciting. The medications make me a bit woozy and weird, so I might be both of those things as people see me. And it's been super challenging to grade papers, but I'm hoping that I'll be able to do some later this afternoon. And I contacted all my wedding people to try and make some last minute wedding plans happen, even from the bed of a hospital room. I'm trying to do what I can, staying positive, and waiting until I have news or visitors. Oh, and Downton Abbey tonight makes everything better (score for having cable!). And "High School Musical 2" is on Disney Channel, so I can watch it without Thomas literally putting him to sleep next to me (in between eye rolling and groaning). #sorrynotsorry

Maggie Smith owns my life.

Admitted: Part 1

To no one in particular, please panic.

Welcome to #blizzardgate2016. I am watching the "epic" (most overused word of 2026) catastrophe unfold sitting next to Thomas, while he enjoys an unexpected Saturday off. No, my hubby-to-be in exactly 2 weeks isn't reaping the quiet benefits of a gifted snow day. Rather, he's reading "Rolling Stone" in a puke green recliner as I rock in and out of sleep on the hospital bed next to him.

This guy is a champ.

Today, we're back at Orange Regional Medical Center, after managing to stay away for almost an entire month. After a long and difficult friday workday, punctuated by pendulum swings in mood and cognition, I suffered several seizures late in the evening. In fact, for the first time, the ringing in my ears seem to have directly initiated a seizure, one that brought about auditory and visual hallucinations, along with massive interruptions in articulation.

Thanks to said seizure(s), i was convinced Thomas and I were going to be ax-murdered by the man standing in our door, who was also the devil, who had come to drag me to hell. At the point of hallucinations and a complete breakdown in language and vocalizing my already garbled thoughts, the time had come.

And so, at 1:15 am, I was hurried through triage and surrounded by a plethora of doctors and nurses drawing blood and our medical narrative. And after a very long night speckled with seizures, during which my father visited allowing Thomas the time to sleep, the decision was made to admit me for testing and monitoring. It's probable I'll be here for at least today and tomorrow, and maybe even into Monday.

New fashion trend? Or desperately seeking icepack?

And the testing hasn't even started. I'll be monitored by the epilepsy specialist here, who is said to look like Christ (whose name is Christos), and is the best in the ares (heard that before, but ill a try at optimism). For now, we wait until (hopefully) they catch a seizure on the EEG I will have to wear for 2 days.

And I'm getting married in two weeks, planning a romantic lunch date with my betrothed of moderately edible hospital food, and trying not to freak the F out about money and work. But I also had my first post published on "the Mighty", and didn't realize how critical feeling some sense of agency would be at this moment. While my extraordinary fiance and awesome friends are lifting me up, feeling as though I have a story that is valuable and useful makes me feel like like I serve a purpose.

Nova, the teddy Thomas got in the gift shop for me 💟

I am scared, but I have the unique opportunity to encounter that fear with agency, love, and humor. And I'm blessed to be able to still have a voice, and the means to share my story with this brave community.

The Big, Big Ring

Just having a little fun.

For the past several days, I've been experiencing something I like to call "the big, big ring" (mostly because I think the above song is super dope, even if the grotesque and obnoxious Miley Cyrus is involved in it, and am co-opting it for my own purposes.) Also, talking about somethings as bizarre and annoying as constant ringing in my ears seems somewhat analogous to anything Miley Cyrus has ever done. It also makes it way less scary. 

I appropriately hate myself. 

But seriously, this "big, big ring" is WAY annoying. It comes and goes at a steady, dare I say rhythmic, pace. But whenever the ringing starts, it feels like someone simultaneously chucks my brain into the ocean (salt water, obviously) while jiggling my head so that my vision gets warbled and my words garbled. I look and sound completely intoxicated, which makes me look and feel totally sane. Ironically, the closest thing to this I've ever experienced is one time when I got profoundly drunk and wound up in the ER (sometimes, we're young and stupid). But even alcohol poisoning doesn't come close to replicating these symptoms - they are just so strange. 

This is probably true.

There is some speculation among neurologists that when ear ringing accompanies a seizure disorder, one of two things might be happening. One (dark) possibility is that the patient is experiencing a simple partial seizure during the duration of the ear-ringing. According to Epilepsy.com, people who have a head injury (I've only had about five from grand mal or secondary generalized seizures over the past two months) are more likely to experience simple partial seizures, and that during these brief (usually 2-minute long) seizures, the individual is fully awake, alert, and able to interact. Overall, this seems like a pretty accurate description of what I experience. Another invisible seizure. 

But others suggest that ear ringing can also be an aura, or warning, or a more profound seizure episode. In fact, simple partial seizures can also act as auras for other seizures. So, that's a bit of a chicken/egg issue.

Love this guy. 

Needless to say, my seizure survey continues. I can now, probably, add simple partial seizure to the list of the types of seizures that I've had, including grand mal, absence, atonic, secondary generalized, and post-ictal (which is not considered a seizure type in all medical circles). My brain is clearly a hot, hot mess.

They say knowledge is power. They also say Google has turned us all into doctors. I want to meet this "they." But here's the thing, there's such a dearth of quality health professionals, that you have to become your own doctor and stalk doctors to get the help you need. And with seizures constantly showing their new and shiny faces, I can't live on their time, unless I want the big, big ring to turn into an alarm clock I can't shut off.