Easy in my harness

Right now, the EMU is quiet. There are no epileptic children squawking, as there often are. It makes this place feel like a pet store full of myna birds and guinea pigs rather than a specialized care unit in one of the more prestigious hospitals on the Eastern Seaboard. When it is quiet like this, and no one is fussing with my electrodes or checking my pulse, and all I can hear are the sounds of minutes passing by I think I might mistake whatever I am feeling for something close to contented.

It is, in some ways, a relief to be literally glued to one spot for a time, at least for me-- at least for now. For all the discomforts of the wires, and the tedium, and the terrible food they bring me (or forget to bring me...), I can sort of make peace with being stuck here. I have to be here, for a predetermined length of time, for a predetermined reason, and that is that, There is no anguish on my part whatsoever over what I should be doing, and if it is the right thing to be doing at all. It is easier to stifle longing for various elsewheres when I cannot even walk across the hall. Of course I cannot be at Knox right now, I am glued here. I am glued here until Monday, and so why bother longing at all?

It is, of course, not so easy to settle into my surroundings when I am at home. There I am also trapped, in a lot of ways (some some of them literal, some of them less so), but for no good reason. When I am able-bodied and un-glued, I do not think I should be content to sit in Maryland, biding my time until somebody signs my permission slip. Just as the wild animal who knows he is injured will allow himself to be handled and caged, and the one who is well will bite and pace when he is restrained, so too do I, I suppose (Now I apologize for that metaphor, I really do, but it was apt, you see. You understand. Don't make fun).

All of this is not to say that I do not want to be at Knox right now, because of course I do.I just have momentarily sorted out "something I want" from "something I should have", and so the turmoil of being trapped has died down. It's nice. When you give up the struggle, it is quiet. The myna birds of the EMU will teach you that.

**Post originally written 3/27/2010. There is sadly very spotty internet in the Epilepsy Monitoring Unit, so it was not published at the time.

Get to Know Your Serotonin Representatives

There comes a time in every girl's life when she asks herself: "How well do I really know my circulatory and nervous systems?"

This usually occurs after an episode of syncope, as it did for me, and it led me to physician after physician seeking answers. this is because, as it turned out, I didn't really know my circulatory or nervous systems at all. Here I had been, thinking that my fainting spells were "out of character" for them, when really it was them finally manifesting their underlying character. It had been there all along.

With every new pronouncement of pathology that gets filed away in my ever-expanding medical record, I get to experience that strange collision of frustration ,worry, fear, bafflement, optimism and doubt that is the moment of diagnosis.

And so, upon reflection, things really aren't so bad after all.

...But Sometimes They Ask About Other Things.

Other things being: Are you alive? Are you still in college? Have you told the folks about the convulsions, Krissy?

Unconventional Usage of SSRI-class Medications for Experimantal Treatment

I have not been unconscious in a while. The pills are keeping me upright but making me sad.

Operation CBC EBV

18 December 2008:

8:30 AM

I am asleep. An alarm is set for 9:30. This allows me precisely one half-hour to wake, dress, and eat before leaving for a physical therapy appointment. I have no plans of being awake until that time. In fact, I have no plans whatsoever. This is due to my being asleep.

My mother places a phone call to Pediatric Associates of Ellicott City, inquiring about test results to see if I have mono. Since I am eighteen, she is unsuccessful.

9:00 AM

My mother, believing the hours before eleven AM to be the most crucial, wakes me. She requests that I call the Pediatric Associates of Ellicott City myself to get the results that she could not. I decline.

9:05 AM

My mother attempts to wake me again, although I have not yet fallen back asleep. I am tired. This is due to my lack of plans to be awake. Too fatigued to yell downstairs, I place a call from my cell phone.

9:07 AM

The house phone rings. My mother answers. This exchange follows:

Krissy: Why, mother, WHY, did you think it was a good idea to wake me up half an hour before I NEEDED to be up to ask me to make a NON-ESSENTIAL phone call that could just as easily be made half an hour later?

Carmen: Well, I just thought...

Krissy: WHY?

I hang up.

9:10 AM

I am unable to fall back asleep. I go downstairs. I ask for the phone number to the Pediatric Associates of Ellicott City.

9:15

After calling the Pediatric Associates of Ellicott City, I am still on hold. I tire of listening to smooth jazz selections from the Nutcracker Suite. I abandon my mission and get ready t go to physical therapy instead.

9:30

Afraid of the Pediatric Associates of Ellicott City returning my phone call while I am out, and risking their refusal to leave my test results on the answering machine or with my sister, I hatch a plan.

Krissy: Kylie, I have a spy mission for you.

Kylie: ...

Krissy: If the doctor's office calls while I am out, TELL THEM YOU ARE ME. They will give you my test results. WRITE THESE DOWN. Okay?

Kylie: Okay.

11:00 AM

I return home from physical therapy.

Krissy: KYLIE! Come down here and give me your spy report!

Kylie: Oh, um, well, okay, so, I told them I was you, but, then they wanted to know what the test was for, but I didn't know...

Krissy: Did you crack?! GOD, Kylie, you ALWAYS crack! You are a TERRIBLE spy!

Kylie: I didn't! I didn't! I stuck to the plan! I told them the fax number of your cardiologist, but they still wanted to know what the test was for. So, I just said I needed to ask my mom...

Carmen: You did the right thing, Kylie. WE'll just have to call back...

Krissy: You failed your spy mission. The man from Uncle would NOT be proud.

Kylie: I was given faulty intelligence!!

Krissy: There are no excuses for failed spy missions. I am going back to bed.

2:00 PM

I wake from my nap. My mother has attempted to call the Pediatric Associates of Ellicott City twice more to get my results. The first attempt was unsuccessful. On the second try, the mission was a success.

I had mono.

I Got Rhythm

You (if there is a "you" anymore for this blog) will not likely be surprised to learn that I have returned to blogging only because I am stuck at home. You will also likely assume that I am stuck at home because of medical complications. As it happens, you are right.

Postural tachycardia syndrome (POTS) and neurally mediated hypotension (NMH) are at it again, those rascally disorders responsible for such hilarious hijinks as "In the ER Again" and "Passed Out on the Pavement"! They're back and better than ever, this time sending me home from college early with incompletes in all of my classes. Now, don't get me wrong. I'm used to this stuff! I was expelled from my high school because of this stuff. I spent a year not leaving my house because of this stuff. I went to community college for a year because of this stuff. This stuff didn't jump out from behind the shrubbery and surprise me one foggy evening.

Excluding the element of surprise, though, does not make POTS and NMH significantly more manageable. For whatever reason, no matter how many times I explain to the paramedic that I KNOW what's wrong with me, and I DON'T need to go to the hospital, they never seem to trust the trembling eighteen year-old that is lying on the floor of the classroom that they arrived to find unconscious and convulsing. Go figure.

What all of this means, and what I'm getting to, is that I'm back and at it again-- new medications! After altering the dosage of something I'm already on (Florinef), it has been determined that new and different classes of medications will be required to treat my symptoms. That's where Norpace comes in.

Norpace is an antiarrhythmic drug that works by blocking certain signals to the heart that may cause it to beat abnormally fast. It's kind of an intense drug, usually administered in hospitals to patients with life-threatening ventrical tachycardia. It is not recommended for minor conditions. It is not designed to treat the conditions that I posses. It can (rarely) cause congestive heart failure since it, you know, is messing with the heart and its beating. Naturally, I am totally excited to start this medication.

I mean it!I am! Even though new drugs often result in my inability to eat solid foods, sleep, and walk around the house, I am absolutely, legitimately excited to start messing with meds again. In a strange way, I really do enjoy seeing my doctors at Hopkins. Dr. Peter Rowe (my cardiologist) is very possibly the most brilliant and kind physician I have ever had the privilege of working with, not to mention his delightfully sharp wit. I end up feeling very honored to be seen by a doctor who spends his time researching, lecturing, and practicing on some of the most interesting and complicated medical cases in the country. It is even more exciting for me to be prescribed drugs whose effects on me may assist his research and understanding of medicine. I feel terribly important. And, as they always say, self-importance is the best medicine.

Kind of.

I'm basically a doctor

So. If you have a fever and a cool, damp cloth just isn't cutting it, I recommend slathering yourself in peppermint oil lotion. Then you will be cool and tingly.

BONUS! The scent of peppermint is good for nausea!

Ow ow! (and it's not because you look good)

So apparently our insurance company is refusing to pay for my physical therapy because it isn't "medically necessary". But the fact that a 2-inch portion of my spine does all the bending, and can only bend one way, and the fact that my hypermobile hips could dislocate at any given time, and the fact that bending my neck back consistently pinches a nerve kind of sound like medically necessary reasons to me.

But hey, what do I know? I'll just get back on the oxycontin for the chronic pain. No prob.

I don't even want any candy.

Today: a shot on both arms, holographic star-shaped bandages from the nurse dressed as a fairly princess, and the realization that I need to write a research paper by tomorrow morning. Happy Halloween, guys.

Iron deficiency

For a long while now, I haven't been able to think of anything to say. Anything, that is, that wouldn't be cause for you to worry.

I've become so stuck in this place that I'm in that sometimes I wonder if I shouldn't worry. I'm hanging in some sort of limbo between real life and total meninglessness, where I exist but don't participate.

I can excuse it now, sure. I'm hundreds of miles away from the only friends I have, I'm too sick to go to school and make new ones, I don't pursue any hobbies because of my physical state, I don't read because my head is too clouded by medications. Nobody's blaming me for sitting around doing (literally) nothing. But I wonder what my excuse was last February, when I was surrounded by friends and seemingly happy with my life. What will be my excuse when I head off to college on my own? My isolation and disinvolvement, while currently pushed to an extreme by circumstance, may not go away.

It's a frightening thing to contemplate. For so long, I've romanticized college, convincing myself of is magical transitional powers. And while I maintian that getting out of Maryland and sorting out my medical concerns will improve my condition, I'm afraid I'll still do this to myself. Like I know, while invisible, that I'm doing now. Like I've done before.

It is not the incapablity of happiness. I enjoy things and I still laugh. What I'm describing is the incapability to sit, alone with my thoughts and decisions, and be fine. Not happy, just fine. Happiness is something else entirely, something fleeting and needing no contemplation. But what I'm talking about, what I'm struggling with, is something more closely related to satisfaction or fulfillment of the self. And while I don't expect my own or anyone else's levels of this thing to ever be complete, I'd like to be a little less anemic.

What an eyesore

"Oh, how bizarre, how interesting and bizarre..." says Dr. Tong, examining the technician's findings. I'm sitting, slightly elevated, in an optical exam chair. Dr. Tong leans over charts filled with measurements (of what? I don't know) and my mother wrings her hands nervously. "Well," he says, "you have fourth-nerve palsy." I lean back, and for a reason I cannot recall, mutter "I gots me some palsy." to myself.

Dr. Tong continues, explaining exactly what the condition is. To paraphrase, a specific nerve/muscle combination that controls my left eye is screwed up. He stands up, takes a series of prisms from a drawer, and walks over to my mother's chair. "Using these prisms," he says, with a precise and oddly-emphasized English characteristic of non-native speakers, "I will simulate for you the way Kristen's eyes see the world." He lines up the prisms and holds them up to her eye. "Oh, my," my mother said, screwing her face up in concentration. "How on earth does she..." Her sentence goes unfinished. Dr. Tong removes the prisms and asks her what she saw. "Well, everything was doubled," she began. "But not just that. One half of something would be over here," she gestured to her left. "and the other half would be somewhere to the right and above it! I don't know how Krissy possibly sees." Dr. Tong nods. "Hold on," I say, "I don't see like that. I mean, I'll get double vision when I look in certain directions, but it's nothing so drastic as that." "Ah," Dr. Tong turns to me, "But it is!"

He begins pointing things out about me, things like my crooked glasses and the way I tilt my head slightly to the left. My mother tells him that the glasses are nothing, that I've always had crooked glasses, I have since I was in preschool, and so that couldn't possibly indicate anything. Growing more passionate with his speech, Dr. Tong responds. "Precisely!" He takes out some angle-measuring device and, holding it up to my glasses, mutters a rapid series of complex measurements to himself. "Her glasses are crooked at the exact angle to partially alleviate her condition! And you say they have been like this since she was young?" "Well," my mother says, "We always thought she was just rough on them." "Kylie always thought I had crooked ears.." I add. Dr. Tong is fascinated. "It all makes sense." he says. "The way you have bent them is therapeutic to your eyes. It moves things for you. Do you remember how your mother said things looked split through the prism?" I nod. "Well, by tilting your glasses, the lens moves things closer to where they should be. It is remarkable though, for a patient, even subconsciously, to have made these adjustments, especially from a young age!" "Oh. But if that doesn't entirely remedy my condition, how come I see fairly normally?" "Well, you tilt your head to the left, and while it is only a slight tilt, it contributes to the effect of the tilted glasses. Aside from these outward remedies, the rest is done through muscular compensation. You say that you have been diagnosed with Chronic Fatigue Syndrome?" he asks. "Well, yes," I answer, "But I think that has more to do with the Ehlers-Danlos* syndrome than anything else..." "This may be true," Dr. Tong continues, nodding, "But the muscles of your left eye are working five, perhaps more, times as hard as your right eye in order to straighten out your vision. While it does not seem like your eyes could make you feel tired, this could be a major contributor to your already existent problem. You may not feel strained at this point in your life, but somewhere down the line, perhaps sooner than you think, the constant fight to see will take a toll on you. It will be too much." My mother looks at me, but I don't quite know what to say. "Furthermore," Dr. Tong continues, "your head tilt is dangerous, especially since you have Ehlers-Danlos. Over time, the vertebrae in your neck will stop looking like they are discs, and start looking like they are wedges. Your bones will change shape." "She's already in physical therapy for her back and neck!" my mother blurts out, looking overwhelmed. "Well," Dr. Tong says, "Let us explore the treatment options."

I sit back, waiting for the expected round of drugs that usually comes my way when doctors discuss my treatment options. "You have three options." Dr. Tong begins. "You can have surgery, wear prism glasses, or do nothing. I strongly warn you not to do nothing, because while it may not seem like an insurmountable challenge to overcome right now, fighting this disorder will only become harder for you. Surgery is your best option." "Well, we don't really want surgery." my mother says. "What are the prism glasses?" "The prism glasses use special glass, prisms, to shift the problem. You must be aware though, that the problem is not corrected, it is merely shifted. As Kristen currently sees, her vision to the right (with glasses) is fine. The center is mostly fine, but she occasionally sees double, and her vision to the left is awful. What prism glasses will do is shift the problem so there is no problem in the middle, less problem to the left, but the right, where there was no problem, will now have some problem. That is why I recommend surgery." Alright, but exactly what does the surgery entail?" my mother asks, clearly unsure of herself.

"Well, we don't actually take the eyeball completely out..." says Dr. Tong.



And so it looks like I'm getting eye surgery pretty soon. (I don't know how long it takes to get an appointment.) It also looks like I gots me some palsy.

Why I stuffed my mouth with Kleenex at 2:40 last night

I can't sleep.

That came first. I came off a med or two, started up some new ones, and I can't sleep. Okay, fine. The doctor said that might happen. Sure, it's uncomfortable when four o' clock rolls around and I'm still tossing and turning, but cool. Whatever, I'll just take a nap tomorrow.

It continues. Three nights later, my problems start. Not sleep deprivation. Not even headaches. Nope.

Saliva.

It's only 11:30 on Tuesday night. I'm awake, no surprises here. But holy shit, I'm swallowing an awful lot. Hold on, maybe I'm just being paranoid, maybe it's just because I'm lying here with nothing else to think about except swallowing. That's it.

Gulp.

It's 3:45 now, and what the hell? I can't stop swallowing! Okay, everyone swallows their spit. I've always done it...so why is it happening so often, or why am I noticing so much? Maybe a drink of water will help.

Ugh!

The stuff's only tasted worse at wellgroup waiting for a urine sample. And that's saying something. It's probably just the meds. I'll get used to it. I fall asleep sometime after 4:30.

I'm fine.

Until Wednesday night. It happens again, only it starts in at nine, not eleven. I haven't even crawled into bed yet. Again, swallow...swallow...swallow...swallow...swallow...swallow...swallow...that's all my brain is doing. Telling me to swallow. I try to focus on other things, anything!

4:15

...swallow...swallow...swallow...swallow...swallow...swallow...swallow...swallow...
Somewhere along the line I drift off. 8:30, Mom calls upstairs, time to get up. And swallow.

No!

This went away after sleeping yesterday! Well, as crime fighters everywhere (or maybe just Buzz Lightyear) bellow at evil-doers: "Not today!!" And so ,as Gogol Bordello would say: "Fuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuck!"

Twelve hours pass.

Still swallowing. And still not knowing if its the meds or I'm just crazy.

I heart Cat and Girl

Guess which one I want.

I'm addicted to lazy.

I am all kinds of unhappy right now. My migranes are back, despite my various meds, I live in Ellicott City, my father is annoying, I have absolutely nothing to do with myself all day, I have a stupid schedule at my new school, and, oh yeah, I'm fat now!

I have no idea if it's the meds, which can cause weight gain, or my constant boredom (read: constant eating), but I've definitely gone from a size 4-6 to an 8. I only know this because I went shopping yesterday, and also because I fit perfectly into my baggy jeans. I know it's stupid and superficial, and it shouldn't bother me, but it really does. Also, I know that I'm not obese or anything, but it's just one more thing on top of everything else. Oh, and also my parents, father included, were telling me that they weighed less than me in college. This again? Didn't my mother get this out of her system when I was in seventh grade? I didn't think parents wanted their children to become anorexic, but hey, what do I know?

In not-so-stupid news, I gave my dog a bath today. Yes, that is how bored I am here. I chose to bathe my dog.

Back to stupidity. (But wait, Krissy, how was you blogging about bathing your dog not stupid?) I can't eat feta anymore.






(space to react)






I just can't. We even found a middle-eastern grocery, where I can get any variety my heart desires, fresh pitas, hummus, pastries, and everything else I live for. The only thing is, there's a pound of Bulgarian feta in my kitchen just waiting to be devoured, and I can't go near it!

Maybe this is why I'm fat! Maybe, there was some enzyme in the feta that sped my metabolism, and now that I'm not eating it, my already disfunctional body's entire digestive system has slowed down! Yeah! I'll bet that's it! I'm a genius!

My brilliance aside, I really don't know what's going on with this whole feta thing. It worries me though...

After tripping on the patio...

Ow. Ow. Ow!

Oh, woe.
My left big toe
wrapped in half a roll of paper towel and the blood soaking through it is beginning to show.
It drips onto the patio.

I'm quite the poet, am I not? So yeah, ow. I can't manage to go more than two days without seeing a doctor. They can't put stitches in it, though, because of its location. Thank God. I will, however, be taking advantage of my get-out-of-class-five-minutes-early pass, so I can hobble from class to class.

I am ridiculously pathetic.

My mother thinks I'm breaking up with her

So, yesterday was Mother's Day! How nice. My dad bought flowers that Kylie and I pretended to have picked out for her, I made her favorite kind of cookies because I was craving them but didn't say anything, and, oh yeah, we got in a huge fight.

The thing is, I had no idea we were fighting.

I stayed, aside from going downstairs to eat/make food, in my room all day, as I have for the past four days since returning from the hospital. My head hurt, and due to various side effects from various new medications*, I sleep for at least 16 hours a day now. Anyway, Sunday. At lunch, when seated with my family, my father kept asking me questions about how I felt. Not, "Does your head still hurt?", but "What emotion are you feeling right now?". Gee, Dad, how about "Pissed off"? This is because, since returning home, my father is convinced that I am suicidal, depressed, and made up my heart condition and seizures to, I don't know, why would I make that up? So all he had done was ask me, "How are you doing... emotionally, I mean?".

Here I must deviate again, so that you understand why this question, coming from him, pisses me off. We are WASPs. We don't hug. We don't even brush shoulders when we sit next to each other on the couch. I haven't told my parents that I loved them since I was six years old. We are cold, socially akward, WASPs. We DO NOT talk about our feelings. We don't talk about anything but work, school, redecorating, and the occasional anecdote. Now, when my father thinks I'm going to kill myself and faked unconciousness that resulted in a four-day hospital stay and the discovery of a medical condition that caused my unconciousness (yeah Dad. Just kidding! My heart didn't really stop beating during that test, I faked it!Haha!), now, he wants me to show some emotion.

So I was mad at him. And so I mumbled "fine" and continued eating. My head hurt, still, and so conversation, especially this one, was not really something I wanted to take part in. I sat in silence, save for a few good-natured remarks about my sister's lack of aptitude in the area of handling cutlery, but they just my usual, sarcastic, well-recieved bits. You know, like, "Kylie, unlike the Spainish members of the royal court in the sixteenth century, you should by now be familiar with the fork and how to use it, as it is no longer classifiable as a new invention". Stuff like that. Kylie doesn't recognize it as nasty or intentionally harmful, nor does anyone else who at all knows me. My mother though, couldn't take it. Sheleft her plate, half un-eaten, and went upstairs to cry.

Unaware of why she left, I continued eating, then went back to my room to sleep for four more hours. All this time, I had absolutely no idea that she was upset. The only thing that could have created friction between us in the past day or so was an incident on Saturday night, in which I had an episode, passed out in the living room, and came to while she was yelling at me for sleeping with my face in a book. Confused and shakey, I started crying, she yelled at me for sleeping on my face and crushing my glasses, my father came in, knew that I had been unconcious and not sleeping, and told my mother to calm down. He asked me if I was stressed, because he thinks I have episodes on purpose to be excused from my responsibilities. I said yes, because after awaking to my mother literally yelling in my face for sleeping, when I had absolutely done nothing wrong, I was kind of stressed. I told him this. He said, "I know, but your mother just was stressed so she started yelling. This whole business of yours has been very hard on her, you know." And so, choosing to ingnore his talk of "this business" of mine, and just how hard my medical woes, including chonic pain that triggers my heart condition, was on her, I nodded and wobbled upstairs to my room, to sleep.

Apparntly this was our falling out. I had no other incident or words to go on, when Sunday evening my father approached me and asked "Are you mad at your mother?". I answered no, out of honesty, though I cannot say my voice was not tense with resraint. I had had it with his attempts at a heart-to-heart, and was trying not to let my anger towards him blow up into something unmanagable. "Well, then," he said. "Are you being mean to her for a reason?"
"What?"
"ARe you purposefully being mean to her on Mother's Day for a reason?"
"What did I do?!?"
"All right."
"What???"
And he got up and left the room.

My mother has not spoken to me since. She only gives pained looks, and turns away at the sight of me, then goes to read her eight or so "Thinking of you" and "I'm here for you in these hard times" greeting cards from friends. (NOTE: I have two get-well cards. I don't want more, but, why does she have eight?)

So that's it, kind of. My mother is mad at me, I'm mad at my father, and I can't leave the house for another week. Oh, and did I mention she's having her friend babysit me? Anyhow, life kind of sucks here, with the exception of feta, but I'm dealing with it.

*Um, I was going to go into it, but it's too long. Another post, guys, another post...

Her Glorious Return

Home again, and the cat meows and my dad never stops conference-calling the plant at Lake Charles on speakerphone and we get kicked out by prospective buyers and a slightly pushy realtor and I have piles of missed schoolwork to do...it's good to be back.

I was released yesterday with four new prescriptions that I'll never remember to take, three scheduled follow-ups, an order to be home-bound for up to another week, and no dietary resrictions. NO DIETARY RESTRICTIONS!! The first thing I did with my dizzy and drugged self when I got home was to break out the gorgonzola and order Chinese. Hell, I don't care if my heart momentarily spazzes and I sieze unconciously, it's better than my no dairy, no acid, no spices diet. I can eat cheese! And asian food! Mexican! Italian! INDIAN!!

I am happy. That's right, not angry, not cynical, well, still cynical, not depressed or anything else I normally am. I feel wonderful. It's truly awesome, as awesome as ten billion hot dogs, what a bit of salty, smelly, viened cheese can do.