Cuz ya gotta have faith, faith, faith

"It's not what happens to me, it's what happens IN me. It's not the size of the problem, but how I handle the problem when I fall." -- Greg Horn

I'd be lying if I said it didn't cross my mind that if I really wanted to, I could milk the crap out of this whole situation. I never did actually want to do that, of course, but seriously, how easy would that have been? With a few tears, some "woe is me," a huge pout and a series of small meltdowns I would have been golden! Unfortunately, no matter how hard I try I cannot for the life of me make myself cry (Dr. Seuss, 2.0) and if I actually tried to fake a breakdown everyone knows I would just end up laughing instead. So, long story short, the pity party was a total no-go.

There have been a few times I've heard, "gosh, I'm so sorry this is happening to you" and as much as I appreciate those caring words so, so much, I'm not even sure I could consider this something that has happened "to" me. I haven't been shot or punched or pelted in the face with water balloons or anything like that...it's just the way I'm wired. Yes, obviously things have "happened" because of said wiring, but not with poor intentions from anyone else. They just happen.

And yes, these things that happen are in fact a problem. Depending upon the circumstances they have the potential to be a BIG problem, and not only for myself. There have been 4 instances of full-on Grand Mal (convulsions, unconsciousness, fall to the floor) seizures when I have been about 5 minutes or less from being behind the wheel. In one my mom would have been in the passenger's seat if I hadn't asked her at the last minute to drive instead; another time I had a car full of friends and thankfully we were laughing too much to finish our food any sooner than we did. I don't even want to think about what would have happened TO them and all of the other drivers on the road if things had been minutely different.

So, yeah, this pain in the butt health issue happens, and it affects me in a few different ways--I am usually extremely sore and exhausted afterwards, I am confused beyond belief, and I'll admit that I'm embarrassed sometimes when I think of how my face looked and what my body did....yeesh. The great thing is that not all of the effects of the junky stuff are negative like those. "How can that be?" you might ask? Welp, it's like this...I have never felt a stronger faith in God than I do now. There have been tough times in the last few years when I have had to walk purely by faith, not knowing where I was going or why things that actually were happening "to" me were playing out in such a way. In these moments it can be so difficult to trust without trying to go in your own direction, thinking that you need to take the reigns and get your life back in order. The way I see it is that when it feels like our world is crumbling down around us, trust is all we have to keep us going. A person I love and relate to very, very much reminded me of Proverbs 3:5-6, a passage that explains this much better than I can and has so much meaning to us both. It's worth a read...trust me.

Take me home, country road. To the place, I beloooong!

"There's no place like home."--Dorothy Gale
Was it really necessary to even cite that source? If you didn't know the reference I fear for your future.

ANYWAY...moving right along...

I don't like to complain and I've been really trying not to thus far, making an effort to be as positive as I can be. However, there are some things that have been causing some irritation. I hope it's ok to share it with y'all--if not, just stop reading here, I guess. No, you know what? C'mon, people...suck it up. :) (the irritations are making me sassy..you can deal with that as well.)

1) I AM SO BORED. I've been up for 13 hours without doing one productive thing and it's driving me nuts. Here are the options: puzzles. And that's about it. I guess I'm free to walk up and down the one (very short) hallway (we have to stay on the carpeted area and I think that's pretty self-explanatory) but that's out because frankly I already feel like I've been thrown in the loonie bin and I do not think a such a stroll would help that fear. In fact, it would make it much, much worse. Nurse Diane is my mama bear #2 and refuses to allow me to be in my room during the day. I haven't really tried to rebel, of course, but once she's done with vitals every morning she is utterly insistant that I strap on the helmet and get my booty out there. It's a good idea in theory and she's well-intentioned, but there is seriously no difference between it and the lounge--neither one has other people besides my mom and honestly my room is winning right now. It has fruit snacks and a comfy bed! (yes, I realize fruit snacks are completely mobile but in this case not as accessible from that area. Whatever, forget about the fruit snacks.) As someone who is constantly goinggoinggoing and to crazy places and activities no less, you can imagine how well I'm doing. How in the H-E-double-hocky-sticks can people sit this much?! It's like I can feel my butt getting bigger and I think we can all agree that is the last thing I need. Bright side: mom has been dominating a Muppets puzzle over the last couple of days. Kermit came together quite beautifully.

2) Minnesota's candidates for all government positions are MEAN. Holy cow! I don't watch very much TV while I'm here (or ever, for that matter) but when I do at least every other commercial has one candidate bashing another. I've been thinking a lot about how an election would go if one or both candidates elected (ha, no pun intended) to refrain from mudslinging. It would be great! I know it's not realistic, this is what politics has come to, yada yada yada. I'll just have to avoid the tube until November 7. Bright side: we see their true colors shine. Unfortunately they're not very pretty.

3) I think I'm starting to smell. I can't shower or wash my hair and it's catching up with me pretty quickly. Who wants to be responsible for reminding me to run to the salon for a liter of conditioner before I go home? I think I'm all set for body wash but I suppose you can never have too much. I promise to take care of it before any of you have to hug me. That's right...HAVE to. You have no choice in the matter. Bright side: an all new appreciation for deodorant. And I get to look like this...

4) Needles. Gosh I dislike them. Nurse Joe (who I might love purely for his kindness) tried to flush my IV this evening aaaand it resulted in a dome beneath my skin. HEEBIE GEEBIES. After a series of tape removal that seemed to last for an eternity we finally got the thing out of there. The "specialist" came in for a redo while I lay there, shaking and on the verge of a passout, this time for totally different reasons than the usual. She was great, though. The irritating feeling will either be gone by the morning OR I'll be rocking the look of an elephantitis patient. Bright side: elephants are my favorite animal.

5) I want to go home. I miss it so much! And that includes "home" in every sense of the word. In my world it could mean many things: going to the farm to hug my dad and snuggle with my pups. Spending time with my sister in Fargo, laughing and venting our woes with one another, probably eating our feelings. Seeing my Mr.'s Slykerman, Hample, Bitz and Albertson, laughing incessantly, adding memories to our already long list. One of our family dances and/or Windsor trips. Kari and I having conversations that sound like a foreign language to anyone but us. Marley and I being totally unable to control ourselves. Getting back to Sioux Falls and everything that goes with it--my awesome classes, the crazy kids and fabulous staff I work with, smoothies and Nutella with my roomie, Tuesday Bagel Boy dates--all of it. I'm more than ready to get back to my normal, crazy, amazing life. Bright side: all of this has given me a chance to stand back and see how lucky I really am!

If you stuck it out long enough to be reading this part, I thank you. Thank you for letting me (insert naughty word, just in case. starts with a B.) about all of this stuff and once again for all of the kind words and happy vibes. It means the world to Judith and me! Thank you for actually following this thing! Thank you (in advance) for reciprocating (suffering through, whatever) the hugs that you will most likely be attacked with upon my return. Last but not least...

Thank you friends and family!! We love you!!

...feel free to imagine me saying that Steven Tyler style if you'd like. Because I did and it felt super cool.

...and by calling it "super cool" I'm pretty sure I completely eliminated any badass cred I may have acquired. Plus when referring to cred I don't think it's ok to say you "acquired it." This hole I'm digging is getting deep. So let's just pretend it stopped at "we love you!!" because we really, really do. :)

"This is the day that the Lord has made, let us REJOICE and be glad in it."

Thank you for all of your positive thoughts and words. We are humbled by your thoughtfulness.

This is an interesting journey. I have learned, yet again, to be thankful for good health. At the same time this whole experience is one of helplessness as a Mom. This is a problem I can't fix. Fortunately I believe we are in the right place and we will get answers. I'm pretty sure Kylie's lack of patience came from my gene pool. I can relate! She has had 4 EEGs and an MRI (so far) since we got here, and is monitored continuously, I'm thinking they should have some answers!!!! Then I look at the patients and families going by in the hallway and am thankful that Kylie is walking, talking, studying, texting, and doing jigsaw puzzles!!! I remind myself that it is worth the wait and in the scheme of things it is a blink. So I will "go lay down by my dish" and wait--patiently. The first technician Kylie saw when we arrived on Monday morning assured us that we would get answers and I truly believe that!

I'm shakin' in my (slipper) boots!

"I am afraid, yet fearless. For fearlessness is not the absence of fear, but the bravery to do it, anyway." -- Natalie R. Ladik

Fearless. This adjective is one that has been used to describe Kylie Lynn Perleberg very few times in the last 23 years. These rare occurences during which the label was used include: being the only one willing to talk to a boy when all of my friends thought he was cute, but too afraid to approach...but only if I was feeling especially cute that day, DUH; Jill and I jumping from the platform on the grain bin to the ground, which was a HUGE distance when we had just barely cleared the 5'0" mark in our own height (and I was actually really scared because I thought I'd break my leg and neck, Gail would yell at us, my mom would yell at me, and I wouldn't be able to play basketball...and it would hurt really, really badly); and riding out a RIDICULOUS tubing experience, and that was only half because I was too scared to fall off and die and the other half to show up my big bro--mission accomplished. ;)

However, once we move beyond those miniscule events we have the girl who has an internal freakout just looking at the DVD cover of a horror movie (and hides under blankets shaking if God forbid such a film is playing in the same room);  will sleep in the car for 2 weeks upon seeing 1 mouse in the house; has to bang on the side of the quonset instead of just walking in so all the stupid birds will fly out before they have the chance to buzz me overhead; and practically loses her lunch any time things are spoken of that should REALLY be left in the privacy of one's own restroom. So, fearless by nature? Not so much.

Right now as I lie in this hospital bed with an IV in my arm, my head attached to a bag full of electricity and a helmet on the table that I'll have to wear if I get up, just in case I go down instead, I do feel afraid. It's hard to explain, but the scaredy cat in me is not afraid of what I thought would induce the feeling--I'm not frightened by the seizures anymore. I'm epileptic for a reason; I don't like the fact that they're going to happen but that's not going to stop them, and I know there is an amazing staff here who know how to care for them better than I ever will.

What I'm actually afraid of is that these seizures won't come. My worst fear in this whole process is that we have come this far and gone through all of the crappy stuff only to have it end up being a total waste. The doctors and techs have been seeing the smaller ones that occur when I'm still conscious, which is great, but if those are all we have to go off of I'm nervous that we will simply up my medication doses and I will be sent on my merry way without feeling that I accomplished what I came here to do. Been there, done that. Blech.

According to Ladik, would I be considered fearless? There certainly is not an absence of fear and I do feel brave in coming here to at least give it a shot (and in being seen in public with my lovely helmet and my tail/cord). But is that enough to meet the standard of total fearlessness in this situation? I am truly uncertain and to be honest it might remain that way throughout. All I know for sure is this: the only impact I can have in determining the answer is to continue to face head-on whatever lies ahead. I have zero doubt in my mind that I will be scared--that will never go away--but I kind of like it that way. Mice will always freak me out for as long as I live and I am 99.9999% positive that I'll never be able to walk under the birds, but this is one thing I know I can dominate with courage and the unwillingness to succumb to my inner scaredy cat. Strap on the helmet, grab the electrical cord, and take on the challenge...at least the part that will come within 100 feet.

adjusting. settling. tangling.

"The way I see it, if you want the rainbow, sometimes you gotta put up with the rain." -- Dolly Parton

A dear, dear friend of mine sent that to me at the perfect moment this morning, right as I was about to begin the craziness of adjusting to hospital life. I didn't ask, but I think it's pretty safe to assume that that was in fact what she was referring to as "rain." I'm trying to be optimistic and patient and remember that it's for the best, but I'd be lying if I said it wasn't at least a sprinkly drizzle being in here. I don't want to complain right off the bat, so let me tell you about the pros of this place first!

a) I have awesome nurses and a great doctor. The nurses are all really helpful and kind and (thank goodness because it can really suck!) they know how to stick in a needle so I barely notice. I am grossly squeamish, so to have that characteristic  is enough to make me love them. Rather than sporting the typical white lab coat doctor garb, mine sports a bolo tie and makes me feel like I'm talking to one of my neighbors from home instead of having the intimidation factor that sometimes comes with the position. Plus, there's Daniel--who I believe is a clinician of some kind--straight out of England with an incredible accent.

b) McDonalds on site. McFlurries.

c) The room service menu is unbelievable. Might have to swing by Albertiville for some new pants on the way home.

Alas, like I said, it has its rainy spots. For instance, I'm on a 24/7 EEG with camera surveillance everywhere I go--this amounts to me carrying around a little bag with the electrical pack that connects to all of the wires coming from my head, dragging along a 100 ft cord behind me, trying not to tangle it up in the hallway like an idiot, possibly with me in the middle of it. The cool part, though, is that I now have cornrows to make it easier for them to get to the electrodes. The hair goes really well with the booty now...just sayin.

They encourage socialization out in the "lounge" and to avoid staying in your room all day. Mom and I tried so hard and chilled out there all day...we were left high and dry with no one to socialize but each other. So we did this...

 It's rather disappointing considering that some of my friends were really hopeful that I'd meet the love of my life while we were both sitting out there, waiting to crash and burn when our brains shorted out. Unfortunately, with the neighbors I have up here I don't think I'll be falling in love any time soon unless I want to hit up the Early Bird Special Senior menu on our first date.

The whole experience certainly has its downfalls; I hate having an IV in my arm at all times...I can't leave the unit at all...I can't even wash my hair for 4-5 days. But now that I'm up here, I realize just how lucky I am. Sure, it sucks that I'll be in here for a week or 2 waiting to figure out some epilepsy stuff and will probably have to deal with that for a long time. Even so, I am so insanely fortunate that we will likely find a way to control it, and learning to live with that is probably the extent of it, along with some other limitations. There are heart patients in the wing who have tried everything but have not been able to get better, and probably never will. I know that for me there will be a rainbow...not everyone gets to say that. It's absolutely worth the wait.

The last post from the outside!

"If you don't know where you are going, any road will get you there."--Lewis Carroll


Clean hair: check!
Bag full of comfy clothes: check!
Ingredients for PB & Js: check!
Zack Morris under my arm: check!
Excitement/Readiness: the pen hasn't made it to the paper just yet...

Today included the last of my appointments pre-admission for the hospital stay. As a student of Psychology I was all pumped up to meet with the Neuropsychologist who I was scheduled with this morning, thinking to myself, "alright, lady, let's do this. Two can play this game." She must have seen me coming, though, and had to cut the appointment short due to "overlapping of patients." I think she mispronounced "intimidation." To add insult to injury, when asking my marital status, she was anything but surprised to hear that I was single. It was probably the hair... I did have time enough to get through the MMPI test, though. I must say, that thing is a little tricky. You have to decide whether the answer you're choosing is how you really feel OR if it's what you THINK you should feel. It's hard to know if you're being consistent. And there were a ton of questions about flowers? The results should be interesting to pick apart.

Next up was a MINCEP Wellness appointment. Let's put this simply...

 

 These are incredibly entertaining and informative.

 

In all honesty, they really aren't that bad. I learned a lot about the seizures I have, which include Generalized Tonic-Clonic (Grand Mal), Simple Partial, and Absence (Petit Mal). Missy the nurse burned me once again by questioning my knowledge and ability to work a simple JVC VCR. Ummm, with all due respect, Nurse Missy, let's put 2 and 2 together--a VCR needs to be operated...a girl who grew up as the classic 90s kid is a candidate for VCR operation...can you say, "match made in heaven"?! Needless to say, I watched those videos like a boss and Missy didn't bother with anymore silly questions.

 

Once done with my sweet vids I was able to speak with a nurse who filled me in on the series of events that will take place upon Admission tomorrow morning. We'll start off with an MRI at 7:30 am (one of my least favorites, but potentially most informative) where I'll be trying to remember to keep my eyes closed, NOT watching myself go into the tiny tube and having a little freakout, knowing that I'll be stuck in there for the next hour, praying that I didn't forget about any metal that the gigantic magnet would pull from my body. Lovely, yes?

 

Immediately following the MRI I will be whisked away to my Unit that I will be calling home for the next 3-10 days, depending upon how quickly seizures are willing to come and how well they are able to read what the EEG shows. As I said a couple days ago, it's really weird to ask, but can we pray that I'll have some seizures this week? Even little ones will help us make some progress.

 

It's ridiculous to think that whatever happens this week is going to determine so much of what might happen in the future. I'm constantly being asked what every other college student is being asked: "what are you majoring in?" and when we tell them, "oh, okay. and what do you want to do with that when you're done?" and we try to play it cool with a vague answer, while in our minds, all we hear is, "holy crap, how am I supposed to know what will happen between now and then?!" Some do know what they want to do and where they'd like to go, and that is awesome. Sometimes I'm envious, I won't lie. On the other hand, I feel great about remaining open to opportunities. With everything going on in the medical category, though, I've been feeling frustrated, like I'm in a limbo position to hurry up and wait. But here's the thing: it's not up to me to make my plan. I figure there are two ways to look at it: 1) the way I have always looked at it: this is a pain in the butt standing in the way of planning my future. OR 2) the way I should be looking at it: this is my road. And what I need to accept is that all of this craziness is a part of exactly what is supposed to be happening. Regardless of the fact that I have NO IDEA where I'm going, this is the way to get there.

 

 



open with caution..it's NOT a a pretty sight :\

"I've developed a new philosophy. I only dread one day at a time."--Charlie Brown

...and dread today I did. It all started with an EEG (electroencephalogram, a test used to measure brain electrical activity) which I was not looking forward to taking for the bazillionth time. Not even a little bit. The first step of this test involves the technician marking various parts of your scalp by scratching it off, then gluing electrodes to your head that measure your brain waves under different circumstances. The number one rule of an EEG is having clean hair, which means NO PRODUCT of any kind. When making this rule there was clearly no one who could guess that when putting it into effect, they would be exposing themselves to Kylie hair in its truest form...

I have a feeling they went to work right away on finding ways to change that rule. Alice, who was an amazing and helpful tech, made comments about it right off the bat. She tried to play off the challenge I had presented as a joke, but I'm pretty sure she wanted to get me back by making me look like this...

That's my pal, Zack Morris. He was given to me by a really great friend of mine, and he's one of the best cuddlers I've seen in a long time.

 



Just as I had remembered, between the lights they flashed 4 inches from my face and the seemingly endless hard breathing, it was not fun. BUT at the end of all of that, they actually WANT me to sleep to get a reading during that period, and not being the type to ever pass up a nap, Mr. Morris and I happily obliged :) We woke up an hour or 2 later, had a nice shampoo, and were on our way.

While we waited for my first clinical consultation an hour later, mom, Zack and I got down to the the first order of business everyone should follow when going to a new town: find the best bagel shop! We do this as both lovers of carbs and tradition keepers, and when we found Bruegger's, we knew we had done our job, and had done it well. Although I am strongly devoted to my blueberry/honey walnut combo, I felt compelled to honor my favorite fellow bagel lovers with their favorite...

the EVERYTHING bagel!!!

 

Are you absolutely enthralled by this post yet?!?! Sorry, folks, this was my day. It gets better, I promise... Don't you go dyin' on me!

 



The best part came next: I got to actually meet and consult with my epileptologist! Try not to be too jealous, as I realize this is basically everyone's dream come true. Unlike any neurologist I've ever had, she was super thorough and listened to absolutely everything I had to say. She already helped me understand so much, and I think it's going to be a great connection once I'm actually admitted on Wednesday. She told me a lot of things about my seizures, details with which I will not bore you, but the craziest was that I'm having a lot of seizures every day that I don't even know about! To clarify: all of the times I suddenly blank out and have no idea what's going on when I'm talking or when others are...those are seizures. And there are lots more, too. Freeeeeeeakaay...

 

Long story short, we have a great start for the actual hospital admittance period. I'm not excited by any means, but today helped to ease my fears about the complete unknown. I mean, it's still ALMOST completely unknown, but it's getting there!

 

It has been so great to get such supportive and loving emails, phone calls, texts, and hugs from the people in my life. It means the world to me and, even though they're now from hundreds of miles away, they comfort me sosososo much. Throughout the weeks leading up to this trip, I've been playing the classic Kylie "oh it's no big deal, let's just joke about it instead" card and not really facing the situation. Yesterday I got to go to church and have breakfast with some of my family, and cried enough to make up for all of the time I had held it all in. The opening hymn was one of my all-time favorites, I was utterly humbled to hear my name mentioned in the prayers of the people, and these people I was with are just too darn good at saying exactly what I need to hear and giving hugs that make me weak in the knees. I am simply blessed.

 

P.S. not only am I blessed by ALL of you wonderful people, but I also just spilled cranberry juice on the hotel's light beige carpet, and by some act of God and the magic of what I assume is StainMaster carpet, the stain has lifted! hallelujah! (no one tell Judy!!)

 

God bless :)