On the Line

It's 1:09 a.m. on New Year's Eve - the day before the official onset of 2016 has literally just begun. I am jostled, violently, out of sleep by the nasty resurgence of the migraine my body had been fighting off (with a healthy dose of sleep), coupled with intense nausea, and the most excruciating lower back pain I have experienced in a reasonable period of time (thanks to a ten+ year-old back injury from NFA Lacrosse). 

I had a seizure several hours before; the kind of seizure that I experience only in the past tense through Thomas relaying the experience to me, as if I'm some kind of absent bystander.  I remember nothing of the incident, other than waking up in a swamp of drool, and simply fell asleep right after. I had been fighting off a headache for most of the day yesterday, and there was a touch of inevitability to eventual seizure (and a sense of elation that it waited until late at night to happen, as to not ruin my day). Not to mention I was super tired, and super stressed that evening. It was a literal molotov cocktail waiting to explode, and as I was told, we were lucky the seizure was a small explosion. 

But waking up in that much pain, with my stomach feeling as if it were being torn to shreds while the invisible vice around my head continued to pulsate with tightening and loosening, and the weighted dumbbell housed in my back tripled in its miserable weight - it was too much. After an initial (failed) attempt to go back to bed, after vomiting at least three times (out of pain), I announced to Thomas that we would be going to the hospital. And so, out of bed he lept as I packed up my wallet, cell phone, COBRA notice (extending coverage until today), and the bevy of medications I take, and off to Orange Regional we went.

This is not a PSA for Orange Regional, but not withstanding the surly intake nurse that was slightly more inquisitioner than caretaker, that hospital was spot-on in its care. I was sped along the process with an unfamiliar ease - a stark contrast to the lengthy wait times expected at St. Luke's in Newburgh. Additionally, I noticed that everything from the linens, to the waiting room chairs, to the nurses themselves smelled GOOD. The smell of antiseptic and vomit didn't seem to plague the ER beds, which was a lovely change, and helped to reduce some of the anger of the migraine. The speed of medication administration, not to mention discharge, was also a very welcome change. 

Styling, #HungerGames.

Be it some kind of anti-serendipity or tragic-comedy (I am so dedicated to this word that I would use it thusly), they decided to buff and wax the floors in the ER at the exact same time I was lead into my bed. I fought, rather unsuccessfully, to mold the linen at the bottom of my bed around my head and eyes to block out as much of the noise and flickering lights of the ER as possible from exacerbating the migraine, while secretly willing the deaths of what I imagine to be lovely and dedicated hospital workers. No one likes to be that person, the evil and terse patient, but Migraines turn you into a monster. Please don't judge me.

After a nurse came in and demanded to turn on the lights to the room (despite my outcries) to draw blood, the doctor came in and offered a cocktail of anti-nausea, anti-inflammatory, and pain medicines that would be administered by my very sweet male nurse that made small-talk and entertained what I can only imagined was a sad attempt at comedy on my part. Thomas is convinced he was flirting with me, and if he could be flirting with someone with obvious VPL wearing a sweatshirt with pug puppies wearing neon bows (from the kids department at KMart), all the more power to him. I was just happy I was going to be seeing some relief, and given the right medications, perhaps some stars. 

Fiction. 

Fact. Not hot. 

I was given Zofran and benedryl (to eliminate the nausea) and Topirol (to reduce the pain of the migraine). I had very little energy to freak out about being given Topirol, and made the conscious decision to die if I had to, in an attempt to receive some relief (if you've read my posts, you know that the last time I was given Topirol, I "hulked out" and then begged Thomas not to let me die). Needless to say, as sleepy as the benedryl made me, the Topirol didn't have a serious impact in mitigating the migraine, nor did it have any psychosis inducing symptoms. So, I was offered a small round disc - Percocet. There is nothing like Narcotics to make any kind of pain go away; I was finally ready to go home to pass the hell out, and wait for Thomas to fill the script of Percocet given to me by the Dr (just in case).

Pretty much what Thomas' hair looked like. What a champ. 

Thomas, as usual, was a champ. I don't remember most of the ER experience, as I oscillated between sleeping, hiding under a linen blanket, and whimpering in a nearly ecstatic state of pain. But he, aware of the long day of work in front of him, sat by me and narrated the parts of the evening that I couldn't remember or simply refused to deal with out of pain and exhaustion to the treatment team. Thomas is my rock, and if I'm going to get through this awful period of insurance nonsense (incidentally, my insurance card didn't work, so I'm now listening to the repeating message of various health insurance companies and the NYSOH) and treatment, it will be because of his resilience and caring. I am the luckiest person alive, even if I can sometimes forget it. That said, I can sometimes forget a lot of things, like where I live - the sweet male nurse asked where Walden was in reference to Middletown, and I couldn't figure it out. 

Today, NYE proper, I am headache-free (for now), but exhausted, totally and completely exhausted. I signed up for insurance through the NYS of Health Exchange, having to stomach the costs of a high-premium, low deductible "gold" plan through Fidelis, that will unfortunately (likely) not start until Feb (as I missed the deadline for Jan, even though the deadline was the day after I stopped working at CP). I have been on hold with the exchange for over an hour to try and fight this date of enrollment, to move it up to Jan 1. If this unnecessarily extensive wait is any indication of my success, I expect to be pissed off in about another hour, if I can stay awake that long. Poor Thomas - if I am this tired, I can only imagine how tired he is. 

I am hoping not to be a wet blanket tonight, and try to celebrate with the love of my life in whatever way someone like me can celebrate NYE. I'm excited for the start of the New Year, and have a post on the way about a tentative diagnosis that I will share with you tomorrow to mark the New Year. But at this point, I'm trying to just "remain on the line", in whatever metaphorical sense that can be understood. Even if it's from that movie when Lance Bass tried to be straight. 

Happy New Year's Eve. May you find yourself less irritated by unresponsive phone conversations, and full of the love of family - which, if its anything like mine, is worth more than gold (coverage or otherwise). I crack myself up. 

A Taste of the Holidays

I haven’t had a seizure since Christmas Day, when I had one (?)/two (?) while visiting my mother. I’m always happy to report measurable periods of time without seizures, as it makes me feel like the medications have an occasional success rate, and that thing called hope is real.

Buy this Symptom, in Stuffed Form. 

But here’s a fun new symptom that is remarkably hard to explain, and makes that little bird called hope fly off into the sunset. It’s hideous, monstrous, and impossible to eliminate. Every second of every day, I have this taste in my mouth, coupled with this oxymoronic sensation of dryness and salivation. There is a salty undercurrent of the taste, with a strong punch of sulfur, and notes of something sweet – too sweet – ghastly sweet. Honestly, it tastes like the aftermath of a night packed with heavy drinking, followed by heavier vomiting. The kind of residue left in your mouth that only red-wine vomit can leave, the kind you cannot erase, not with toothpaste, mouthwash, food, or any other kind of drink. The kind you smell in your nose because you vomited so hard. The kind that seems to follow you like a perfume, infecting your desk space, your seat on the train, etc. The kind you just have to sit with for the day to remind yourself not to drink so much again. The kind that seems like karmic punishment.

There is a single saving grace to this predicament; no one has said anything about what I imagine must be my rancid breath.  I am drinking water and snacking on mints and tea in an attempt to not be a horrible colleague, but I’m paranoid that the kindness of my coworkers masks their disgust. I can report no change, via the mints and tea, so logic would suggest that these are not proving effective antidotes. So now I feel even more gross and weird than I did before, when I was just the girl that might, out of nowhere, have a seizure.

What makes the sensation even stranger is that I taste it in EVERYTHING I eat. It ruins every single bite of food, layering it with this awful taste of decay and rot. The saliva is thicker, and actually feels like it’s coating the food, glazing it like a stale donut. The chinese food I ate for lunch yesterday tasted like vomit. The chips and salsa I tried to eat after that, and dinner following that. The Starbucks double shot I had his morning, and even the apple juice I used to knock down my ten pills this morning. There is not a food or drink I can imagine that wouldn’t taste like rotting flesh, not a single choice I could think to make to break the cycle.  Even the pad thai I had for lunch today, perhaps my favorite food on God’s green earth, tasted putrid and rancid. I downed a bag of doritos, which in itself a rancid, overly processed mess of fake food, and it seemed to help tone down the horrible taste.

"Security Blanket"

And I haven’t done anything differently than I have since I started the meds. Nothing has changed in my daily routine, my eating habits have been consistently strange (but at least consistent, and include real food, doritos not included). I have even had dry mouth before, from both medications and illnesses. I have even had pervasive dry mouth from taking too much benedryl a few summers ago (this can happen, no joke, and is super dangerous). But this is not that kind of problem. This doesn’t go away, no matter what I try to do. Not even Susan’s peanut butter balls, one of the only holiday sweets I really, really enjoy, could assay the taste or make me feel better about my life.

I’ve watched a lot of “Monsters Inside Me,” as a medical freak, and have been called a “hypochondriac” by many, many people. I tend to jump to conclusions that are absurd, acting more of an alarmist than a realist. In fairness to me, I grew up in a house in which this reaction was endorsed, because the people closest to me became inexplicably gravely ill. However, I hold a level of self-awareness that makes me suspicious of my tendencies of (worst-case) self-diagnosis.

You're welcome.

But during one particular episode of “Monsters Inside Me”, which I believe focused on an individual with some kind of parasitic encephalitis, the patient reported a similar sensation of a decaying taste in her mouth that wouldn’t quit. This is no way to say I think I have a parasite or encephalitis. But, brain disease is brain disease, and a swollen brain can be caused by a plethora of ailments. Encephalitis is, scarily enough, fairly common. But the new symptom I am reporting, coupled with the increasing difficulty maintaining clear vision, and the remaining symptoms I’ve been reporting, is troubling.

Who doesn't love this cute little guy?

 And knowing that this may be a sign that my condition, despite the medical interventions I have sought, continues to decline is even more scary to me, since I’m so happy at my new job, and leap closer to my February wedding. This new symptom could be nothing, or it could be something, and I’m aware of my propensity to jump immediately to “something.” But, it’s annoying, obstructive, and hopping around the back of my mind like the March Hare. The taste creates the urgency – I have known that something is wrong, and now I know that there is something else wrong. At best, it’s annoying to experience. At worst – well - luckily I only have one more day before I interrogate the shit out of my sweet natured neurologist and try not to act like the crazy person I feel I am becoming.

Hope is the thing with feathers

"Hope is the thing with feathers - / That perches in the soul - / And sings the tune without the words - / And never stops - at all -" Emily Dickinson

It's Christmas, and that means many things for many people. For Christians, it's a day to celebrate the birth of our Savior, Jesus Christ, and the beginning of a wonderful promise of salvation and hope. But  I don't try and "keep the Christ in Christmas" because corporate greed and commercialism did a pretty sweet job of removing that already. Additionally, the whole idea of Christmas, the real meaty bits about why anyone should celebrate, has to do with hope and love for our fellow earthlings. My wish this year is that should you celebrate this remarkable day, and share messages of hope with your friends and family, as "hope is the greatest of the gifts we'll receive."

Best Holiday/Christmas Disney sequel ever. #ShamelessDisneyplug

But before I get too preachy, let me slow down a bit. The idea of hope is one that seems laughable to someone with a seizure disorder, especially one in the early stages of treatment and diagnosis. "I hope I won't have a seizure" has the same affect as what your loved ones HOPE they can to do help you, what you HOPE the medications will finally start to correct - these things (especially the first two) have no affect. There's nothing anyone can do, but hope.

And I hoped that I wouldn't have a seizure over the holidays. If you read my earlier posts, you knew how scared I was of having one on the MRI table on the 23rd, and how subsequently lucky it was that I didn't. But, unfortunately, I did have seizures yesterday - two be exact. And they did stop me from going to Church, a tradition that I always find meaningful because it fills me with the same hope that Christmas can bring. Instead, I had a clonic tonic, followed by a secondary generalized seizure at around 9 p.m. I made a feeble attempt to socialize upstairs with my to-be-in-laws, but was too tired and weak to put forth much of an effort after the fact, and fell asleep at around 10:30.

Seizures, are difficult to anticipate (the only clues I had to their imminent arrival was a headache, and too much alcohol). But figuring out the types of seizures experienced isn't JUST the job of the doctor, it's important to know what you, and your loved ones can expect. So kick back for a real quick education sesh (with information condensed from epilepsy.com/learn):

Absence Seizures: Lapses of awareness, often characterized by staring into space or "blanking out". These seizures can be difficult to see because they are both brief and subtle. In their "atypical form", a person can demonstrate some responsivity.

Atonic Seizures: Loss of muscle tone, or "drop attacks."

The Tonic/Clonics (sounds like a band name):

Myoclonic: Brief, shock-like jerking that lasts a few seconds.

Tonic: Stiffening of muscles, in which a person can be literally contorted.

Clonic: Convulsions, in which a person jerks repeatedly and cannot be restrained. These (alone) are somewhat rare.

Tonic-Clonic (often thought of as grand mal seizures): Stiffening, convulsions, and loss of consciousness is usually reported. These seizures can last several minutes.

Simple vs. Complex Partial Seizures: These are a little tricky to explain, but they can involve a significant or small change in the motor, sensory, or physic functions of an individual, including changes in thoughts, the presence of hallucinations, etc. These typically last about two minutes, and can be confused with a host of other symptoms and ailments, so can be difficult to correctly diagnose them. In contrast, Complex Partial Seizures affect multiple areas of the brain, are associated with auras (a warning, like a bad particularly taste in your mouth) and involves automatisms (like lip smacking). Sometimes, ESPECIALLY in my case, these seizures turn into...

Secondary Generalized Seizures: These seizures start at one side of the brain, and move to others, can last 1-3 minutes, and usually involve a long recovery process (like a very long nap). According to epilepsy.com, "These seizures occur in more than 30% of patients with partial epilepsy" and occur "after initial seizure activity is detected." I suspect this is why I have seizures, about 2/3 of the time, in groups of two.

As you can probably see, knowing the different types of seizures can help with having productive conversations with your treatment team, and pinpointing symptoms that may be indicative of larger problems. For instance, I am certain that while I've had tonic-clonic seizures on and off throughout my entire life, my sensory processing disorder was probably due to simple seizures in childhood. Moreover, the subtlety of absence seizures made me completely unaware of their presence in my life, but several friends and family members have made comments about me "spacing out." Of course, like many, it took my first big grand mal/clonic tonic seizure to start putting together the 1,000+ piece puzzle that depicts my condition.

Not to bombard you with information, but since it is the holidays, and many spend this time with family trying not to turn into a drunk mess or punch an annoying relative, I've included a link to a VERY useful, and therapeutic website. I encourage you to share this link with the people you love, as it can be difficult to explain how the pressures of the holidays can exacerbate seizure symptoms.

Stress and the Holidays - What it Could Mean for You

Finally, I wish you and your family a very happy holiday, full of this thing called hope, that never stops - at all.

Hope (in a bottle)

"Courage is the mastery of fear, not the absence of fear." - Mark Twain

Disclaimer: Since my wonderfully sweet, red-headed partner in crime at my last job got me the most thoughtful going away/Christmas present, my posts will likely all begin with a relevant and poignant quote from someone far smarter than I. The English nerd in me was deeply inspired to share the musings of men, women, and even children, braver and more articulate than myself to greet you at the beginning of each post.

And a brief word about this dear friend, who we shall call "Ginger". I will keep this brief (to not insult others religious beliefs, at least not yet), but I am as active a Christian as a I can be at the moment, and perhaps even more spiritual that the Lutheran doctrine allows. I believe that God is the ultimate match-maker, and through His wisdom, brought Ginger and I together because we needed each other for emotional strength (and sometimes even physical strength) and courage. While I look forward to beginning a new chapter (tomorrow!), Ginger's kindness and compassion meant the world to me. And now, she has given me the gift of not only her words of wisdom, but the wisdom of the past. I look forward to continuing to share this wonderful gift with you, and to Ginger, thank you.

Just in case my continuing plagiarism inspires you to purchase the book, it's well worth it. 

Now, to elaborate on both the title of the post and the quote used: "Hope in a Bottle", and Mark Twain's thoughts on courage. I do not know if the mastery of fear is possible, and I know I, like many, many others, have a bit of work to do to even begin that journey. But in all fairness, Twain himself died of a massive heart attack after experiencing periods of deep depression, and had a deep fear birthed from Halley's Comet (which he found quite sinister). Perhaps he himself was unable to put theory into practice. To disagree with Twain (whose writings I don't particularly fancy, so I feel less guilty doing so), I don't believe it's the mastery of fear that defines courage - it's rather the ACCEPTANCE of fear. In our world, we are surrounded by terrifying probability and enormous risk of danger - global warming, terrorism, gun violence, car accidents, etc. Being aware of risk(s) and facing them with understanding and fortitude is a much more modern way to define courage.

Which leads me to my part in the story. After suffering for SEVERAL, EXCRUCIATING DAYS with a headache/migraine pattern that attached an invisible vice to my head and squeezed at randomly different intervals throughout the day (reserving a particular malice for evenings), I called my neurologist, daily and in near tears at work, begging for her to do something. Finally, she did do something, giving me a medication more terrifying than kepra and clonazepam combined.

The "P" word. In my anguish, when my doctor's nurse told me she called in a prescription to be picked up, I did not take special care to listen to what I was being prescribed (this is a novice mistake and I should've known better). That said, the desperation born from a migraine is a truly nasty thing. So, when my ever princely Thomas delivered it to me after work, I finally read the bottle, and there it was. PRETNISONE. 

We call this my "pre-roids face". The nearly sticking the bottle up my nose is the post-Kepra/Clonopin face.

According to WEBMD, Pretnisone "can treat many diseases and conditions, especially those associated with inflammation." In various medical communities, it's known as the "wonder-drug." It's been suggested to me several times just this year for shingles, hives, and stomach issues. In the Hurd family, it's known as the medicine that they gave Sarah that time in 11th grade when she came home from Lacrosse practice with a hideous rash, begged to go to the emergency room or be shot and buried in the backyard, who was taken to the hospital (the less bloody solution) and given a Pretnisone injection. The injection appeared on to exacerbate the allergic reaction, turning what was a localized rash into an entirely polka dotted body of angry pink hives. Additionally, the medication then turned me into the elephant (wo)man, causing my lips and ears to swell magical hues of purple and blue. With some hasty injections of benedryl, and then some more benadryl, I was finally able to go home, and suffered the rest of the week without trying to peel my skin off like a snake.

Since those awful two weeks of 11th grade, I always inform doctors about my prednisone allergy. I used to be so diligent that I wore a medical alert bracelet with the allergy on the front of the tag in bright red (now, I will need to get a new medical alert bracelet for the seizures). But, in that moment on Thursday, I do not believe my doctor ignored my medical chart or history; I believe my doctor made a judgment call, hoping the benefit outweighed the risk. And at 8 pm that night, down the Prednisone went. And my life has been better ever since. In addition to having no allergic reaction or medical complications, the side effects seem to be manageable (knock on wood). Slowly, the headaches are decreasing in frequency and severity, giving me some hope that Migralepsy is a more appropriate diagnosis (meaning, the seizures have a clear and obvious trigger). 

But Prednisone is not pretty. Before I go through the list of side effects, let me tell you about a fun little trip to Macy's in which I experienced the emotional clusterfuck that Prednisone can create. Unfortunately, in navigating the wedding registry process, Thomas (but mostly I) made some boo-boo's, including ordering two griddles (and ultimately receiving both), and ordering beautiful Ralph Lauren towels in a color that was poorly represented online, and turned out to be nearly indigo blue. We wanted to exchange them, and chose the Friday night before Christmas to do it (bad, bad timing). So we get to the registry department of Macy's, and the old lady in the bridal registry department ignored us for an extended period of time, despite having made direct eye contact with Thomas, and the two of us growing the volume of our voices to make our presence known. After standing there like idiots, and my steroid-filled anger escalating, Thomas leads me to a sweet older man in a service station who is going on break, but will send someone over. Well, over strolls the mean old woman who reprimanded us by saying she was "counting the money" and that "she wasn't ignoring us, she heard us talking." 

I would've broken her decrepit jaw into little pieces if Thomas wasn't there. Rage literally swept through my veins, followed by the alarming urge to burst into tears. Luckily, at least in that moment, I just stared, gaping mouth, and Thomas handled the rude interaction. Thomas then went to find a manager, while I walked into the little girls clothing department because I felt myself starting to cry.  I desperately wanted to go find the mean old lady and tell her everything; that I'm getting married in less than 50 days and am afraid of having a seizure at the wedding, that Christmas is in a hot second and it will be my first Christmas with my parents divorce and my sister's move to Florida, and, that everyone that comes up to her desk has both joyous and sad stories, and that a huge part of her job is to honor and celebrate a tradition that is crumbling in this country. I just wanted her to understand the hurt she inflicted. 

But I decided that my emotions were still wildly oscillating, and I chose not to seek her out. Instead, I found a quiet place to cry until I saw a sparkly Elsa dress, and thought of the future I could have, with my own little girl fondling the same sparkly fabric while holding my hand. This is a future made a little bit more real by the Prednisone which is working just a little bit more to help get me just a little bit better. To conclude the story, a lovely store manager wearing a Mickey Mouse sweater (this I took as a good sign) offered sincere apologies, asked the appropriate questions about the wedding (the one's the bridal consultant should've asked about the planning, the proposal, etc.), and gave us a gift card in exchange for the towels. We left the store, and we eventually, the sting of what happened faded away.

Seriously, the only magic in Macy's is Kate Spade. AVOID Macy's as a registry option, this anecdote was just ONE horror story of many. 

According to Healthline.com, the common side effects of Pretnisone (other than roid rage) include:

• confusion
• excitement
• restlessness
• headache
• nausea
• vomiting
• thinning skin or acne
• trouble sleeping
• weight gain.

So far, the biggest worry is weight gain, as eating disorder recovery is a nebulous and volatile process that is easily undone. I am afraid of gaining weight, of slipping back into the same habits that put me easily into the underweight BMI category, or never finding recovery, or forgetting that I want recovery.  But courage is knowing the risks, accepting these risks, and powering through them. I will be as careful as I can be about watching what I do (or worse, do not) eat, and know deep in the recesses of my brain that I can afford to gain some weight, which should help the crazy voices in my head that are screaming out against the risk. But I know it will be a struggle, and hope that the medicine is short term, especially since, once again, I only got about 5.5 hours of sleep (sleeplessness, while not at the top of this particular list, is one of the most common symptoms).

But there is hope in both this medication, and even more hope in my willingness to take it knowing the possibility of gaining weight. Resilience is something I am growing into, and my faith in God will help take me/drag me to a place of healing. Hey, sometimes a relationship with the Divine isn't pretty. Whether or not you believe in Christ, Allah, Buddha, etc, whatever guides you through life, I hope it's  a power that makes you feel agency, hope, and allows you to act with kindness and grace. There is so much pain in this world, and if that bridal saleswoman had any notion of kindness, she could've made one person feel a little bit less scared and alone. 

I will leave you with this astonishing video, and encourage you to listen to her message at the conclusion of the song. Whether it's God, Nature, karma, or just plain old love - know that you are beloved and that there is power in this season of giving in love, no matter what a mean old lady tells you. You are loved, and it is within your power to grow that love and share it with a world sorely needs it. 

Oh Sleep! It is a Gentle Thing.

Oh sleep! It is a Gentle Thing. Beloved from pole to pole!

It's 4:51 a.m., and I am reciting "The Rime of the Ancient Mariner" trying to call upon sleep. When that isn't working, I wind up listening to the same episode of "Kitchen Nightmares" that I must've seen over ten times, and just looking super pretentious on this blog by quoting the poem. In truth, I am hoping the seemingly oxymoronic approach of listening to the crass shouting of Gordon Ramsey will soothe me back to sleep after being abruptly woken up, two hours ago, with a headache. If Romantic Poetry doesn't work, try another emotionally challenged Brit. 

From poetry, to "poetry." Those guys.

There is so much more to talk about when it comes to headaches - the crux of my impending diagnosis and the majority of my medical history involves migraines. It is probable that my diagnosis will indeed be migralepsy, which opens up a can of worms I can't begin to catch at 5 a.m. More on that later.

"Insomnia" is such a strong word. I very much respect the complexity and severity of this very real disease, and find tossing it around to describe one night of troubled sleep as repellent as someone claiming to have OCD to describe a minor idiosyncrasy. Hence, I will refrain from another case of self diagnosis (migralepsy is enough for one night). But the number of nights in which my sleep is interrupted and stolen from me continues to increase, and likely contributes to the increasing onset of seizures (which will then occur later in the day). Exhaustion makes your brain do crazy things).

I. HATE. THIS. The abundant use of images is just to make my the page look nice so I can be mildly pleased I accomplished something I like to look at while I counted the minutes of sleep I lost. This pervasive inability to stay asleep is both astounding and completely unexpected. I had occasional difficulty falling asleep before, especially as a teenager, but it was never this nuanced or severe, nor did I ever have difficulty staying asleep.

If you read my prior posts, you know I have no problem falling asleep, and alternatively, have difficulty staying awake sometimes. The other problem, I admit, is much more inconvenient. But let's be real, obviously one informs the other. I'm certainly tired right now, and would love nothing more than to fall back to sleep for just a few minutes. I know I need to sleep, and simultaneously accept that I will not be able to.

To explain the sensation of being unable to sleep when you're this tired (and this frightened of the consequences) is impossible. All I want to do is capture a few minutes, even an hour, to let my brain rest. I know how crucially important rest is for a brain riddled with migraines and seizures, and loaded up on myriad medications.

This symptom absolutely coincides with the November onset of the headaches and seizure activity, but it also coincides with medications I began taking to treat the headaches. Perhaps tonight the medication wore off and hence, a headache that was lying in wait woke me up. Or, maybe it's another medication that's causing the seemingly incessant migraines. Or, maybe it's something more insidious, something lurking in my brain causing all of these problems. And, what's even worse than some sort of catastrophic illness is the doctor's finding nothing at all; having no answers or solutions.

Stress, I know, impacts sleep. Obviously, having seizures is super stressful. But having an eating disorder, being a teenager, working for a totalitarian dictator (years ago), and never having enough money is also stressful. I have dealt with stress because I am human, and have dealt with it without having seizures or losing hours of sleep. There is something else going on that the "power of positive thinking" or "just powering through" will not help.

I apologize if that seemed aggressive. Blame it on the lack of sleep, on the seizures, on the rest of this crazy sauce night - but give me a pass on this one, okay? I'll be better tomorrow (this will be my epitaph).