11-24-12

Nightfall creeps upon me like an icy fever from hell.

I never want to be alone. Don’t leave me alone.

The body aches worsen and headaches approach. I want out. Someone take me away. I need to get out.

I’m feeling stiff now and my mind is wandering. I’m looking around for something to keep me occupied. I’m anxious.

With Lyme, or just about anything, your symptoms worsen at night. A night alone to oneself is a Godsend if you can enjoy it, but I spent so many years alone.

The pains are unbearable and I don’t want to think of them. I’d give anything for a night out in town accompanied by familiar faces just as a distraction.

Nights… Yes… Nights are worse.

When I was younger I spent the long nights awake and alone. The silence would do everything but kill me. I would pace from the pains and tears would fall from my eyes like raindrops. I hated the night. I dreaded the night.

The sharp pains pushed and pulled me or threw me down. I couldn’t control them. I couldn’t avoid them. Completely and utterly alone I would suffer every single night. My fevers would break at dawn and I would find myself wrapped in angel’s wings for only about an hour before being awoken for the day.

Here I am again, alone.

If you cannot relive your past then why does it feel that I have?

The pains are so significant. Something that pain killers cannot mask.

My brain is troubleshooting for sleep. Where is sleep… Cannot find sleep.

Twisting and turn. Pacing and squirming. I want out. I want out I want out I want out.

11-17-12

Insanity knows no boundaries.



Half of the time I don’t even know what I’m thinking about or doing anymore. This life feels like a dream inside of a dream inside of another dream.

Nothing seems real anymore.

I find myself having elusive conversations more and more. Sometimes I can recall what people are saying to me only for a brief moment until I see a speaking face with no sound. The person in front of me becomes a blur, and they look as though they’re in some other dimension. Or maybe I’m the one trailing into dimensions far beyond this one.. I always felt as if I belonged somewhere other than here, anyways.

This world always seemed like the only place that ever was until recently. When I am asleep, my dreams seem so realistic. When I am awake, it feels like I’m actually dreaming.

There was a place I went to in my mind the other night. It was a valley so vast with a distant tree line encircling the rolling hills and streams. The colors of auburns and gold were so vibrant as if Autumn were the only season that existed there. The skies were cloudy and gray, but very cheery nonetheless. In the center of the valley was a concrete block wall which had been painted an off white color. Kind of like a bare wall you would see inside of a school building. There were colorful drawings stretching the entire wall. All of the drawings were things I had drawn some time or another in my childhood. From random doodles to assignments in grade school, they were all there, stretched boldly across the wall, but only on the outer side.

The wall was not a single straight line, but curved to the left to make an L shape. Along the wall were a series of doors. When walking to the other side of the wall expecting to see that the doors had led to nowhere, I was surprised that the doors were only on the outer side of the wall, but not on the inside just as the drawings had been.

Out of curiosity I went over to where the doors were and one by one began opening them. Even though the L shaped wall had seemed relatively short (maybe the length of a large garden shed) the doors seemed never ending.

When I opened each door I found that they had all led to its own individual classroom. Each classroom was decorated slightly different. Some were obviously for younger children, and some were for older the further down I went. The funny thing about the decorations, were that none of them were real, but that they were pictures painted along the perimeter of the room. In each room there was only one real item. In the direct center of the rooms was a single book. All of the books were different from one another. None of the books were books I have ever read in my life, but were the most creative and captivating novels I had ever seen. The stories written were those that are unable to ever be comprehended in this world.

After reading through the last book in the last room (as if time did not exist) I stepped outside into the valley and began closing each and every door that I had opened. When reaching the end of the wall, I noticed that there was a door that I had neglected to see (or maybe it wasn’t there before?). When opening that door I saw another classroom except in the center of the room was a gigantic book that was open wide and out of the book was a staircase leading into a place I couldn’t see without stepping inside the room. With uncertainty I turned my head back to the valley to get one last glance of the Autumn hills before I made the decision to explore my new discovery, but had noticed that the scenery was changing. The skies became darker and it had started to rain. As quickly as the lightning began to strike, I had woken up.

I find it unfair to be able to remember with such intensity something that remains only a dream.

I find it unfair to be able to remember something so insignificant to me in this world, yet to not be able to focus on a conversation in reality.

And with this, I find it most unfair to not feel pain in these wonderlands I visit each night, but instead to wake up to this blurred reality with a constant ache that never lets up.

Tonight I am comforting my throbbing head with a pair of oversized sunglasses. It may be dim, but my eyes feel so sensitive to any light that travels through.

I lie back on this bed and close my broken eyes, and continue to dream of this place that does not exist..

11-11-12

Its never a good sign when you travel to a place so much that it feels like another home, even though it isn't.

Its even worse when you're visiting this place because you're sick.

It was a long drive up. The clouds remained ominous for most of the drive until the sky couldn't retain them any longer. The drive was a cold and gloomy one. No beautiful skies or brief reminders of how beautiful this world can be when given a chance. No. No beauty whatsoever. Just a depressing blanket of gray laying across the state of Missouri. It surely repressed any lingering hope that I had for the day.

I've been seeing this doctor, Dr. Crist, since 1999. Right now we're in Columbia, MO, though it wasn't always Columbia. It started with Branson, then he moved to Springfield, and now well... you get the picture.

I had to stop myself when thinking earlier that I was finally getting used to Columbia since I've been coming here for the last 2 years now. You see, every time I grow used to the city my doctor is in, he abruptly moves to another. I end up relying on a GPS to get me everywhere and it feels like starting over. Its kind of nice to be able to "know" where you need to go.. I'm just afraid that tomorrow he'll inform me that his office is moving even further away from my home. *knock on wood* Let's hope that doesn't happen.

Why travel out of state to see a doctor?

Well, (here I go again..) when you have Lyme Disease most, if not all, infectious disease doctors will deny you treatment or even diagnosis. They will send you everywhere including to the moon and back to get tested for just about everything under the sun to STILL be told that Lyme isn't real. That it is impossible for you to have Lyme Disease. That.. Lyme Disease is only found in other countries. Or that Lyme Disease, well... Doesn't exist. You're nuts. You're crazy. You're a psychopath and God help you for even mentioning such a thing.

No... Noway. Now there has to be some infectious disease doctors out there who know at least a little about Lyme, right? WRONG. Like I've said before and I'll say it again. Lyme is pushed under the rug, constantly. Lyme is a man made disease and because of a government fuck up, it was accidentally released to the general public... for you.... for me..... for your neighbor or dog or great Aunt Betty all the way in Russia to get sick with.

Government: "Oooops... Sorry guys... Didn't mean to uh.... Yeah... Sorry..? If I give you a cookie, will that make up for starting an epidemic??"

Ha. Yeah... Here's a big fat finger to the CDC/IDSA and a personal finger to Terence S. Dermody, M.D. AND C. Buddy Creech, M.D., M.P.H. who are a part of the infectious disease department at Vanderbilt Hospital in Nashville TN.

Out of every doctor who has ever denied me help, Vanderbilt was the most repulsive.

Anyways, so here we go again. Another night spent in Missouri.

You look forward to your weekends with your friends. You look forward to hanging with your drinking buddies or having a nice relaxing glass of wine. You look forward to going dancing or hiking. You look forward to ski trips or beach vacations. You look forward to your alone time or to a night out in town.

I look forward to my next appointment. My next plan. Where are we going next with this?

I look forward to finding out new ways and adding new options of how to save my life.

I look forward to getting better.... But let's not jump ahead of ourselves just yet..

11-6-12

“The best thing about the future is that it comes one day at a time. “
-Abraham Lincoln

My mental and physical capacity has reached its limit. I am finding it hard to concentrate on more than one thing at a time.

Why does it seem that the days have been rushing by, but the weeks feel like decades?
I’m standing in an almost bare room trying to gather my thoughts and plans. While breathing in the dust that is resting upon the many boxes and shelves, I feel the vibe of abandonment given off by the room. There is a stale smell and the items around me look unloved and forgotten about, yet not ready to be let go of.

This is where I’ll be staying.

While trying to move boxes of photographs and old holiday decorations into the garage, I’m realizing that it has been a little over a week since I’ve gotten any real sleep. My son hasn’t settled into our new/old home yet, keeping me up all night, and I’m doing everything I can not to realize my own reality. I’ve felt sudden bursts of energy lately, and I’m rather confused as to whether my medicine is beginning to work, or if it’s a result of the adrenaline that is trying to keep me focused on the false reality I’ve been building for myself for the sake of my own sanity.

After disturbing so much dust in a short period of time I can almost feel my lungs filling with dirt particles. A steady cough has become my friend for the day.

I’m no longer able to think ahead.

I know what I would like to do. I have plans. But I cannot bring myself to act. Everything is happening so fast.

People ask me if I feel any better yet, but that question just seems so difficult for me to answer. I still feel so confused and dyslexic. I’m 5 minutes behind everyone else when it comes to reacting.. Whether it be laughing at a joke or understanding a concept of something. In my mind it feels like I’m somewhere very far away trying to listen into a conversation through a paper cup. It’s like when you put your ear up to a conch shell thinking that you’re listening to the ocean, but in fact it’s your own circulation of blood that you’re actually hearing. Whatever I do hear or comprehend seems to travel to me in a dreamlike state of mind.

Everything is so overwhelming.

I wish I could say that for sure something good will happen from all of this, but it’s really too early to tell. Time will tell if this was for the better. At this point, it is something that has to be taken one day at a time. And honestly, I don’t think I could handle anything more than simply that.

I am asked if I have settled in yet. And I sputter out a “yeah.. I guess so.” But I don’t even really know what settling in is right now. I’ve grown numb to physical and emotional pain. I’m just kind of living.. barely. Everyone and everything is just… kind of there… And the plans for the future, even a future close at hand, seem so distant and unrealistic.

I want to tell you everything is okay. I want to tell you that I’m doing better. I want to tell you that I’m happy with where I am in life. I want to tell you that I know that I’ve made the right decision.

But then I would be lying.

Because I really have no clue what is going on.

Because right now I don’t even feel like myself anymore.

My legs are aching, and possibly reminding me that there still is physical pain. This dull, aching pain is reminding me that my numbing can only last so long. The pain reminds me that a reality face slap is overdue once again. Reminding me that running myself to death isn’t the answer either.

Either way. Maybe I’m just overtired.

Maybe I just need some sleep.

11-2-12

Someone call an ambulance…. I think I’ve been hit by a bus.

I’m pretty sure it was a bus, that or the never ending microscopic war that I have to deal with every second of my life.

Over the last week or so I’ve been finding little tiny bumps popping up… well… everywhere. Maybe it’s a break out of die off, I don’t know, but these bumps itch and are hideous. Along with the bumps I’ve got a creepy crawly sensation that comes and goes as it pleases throughout the days. I can literally see muscles spasm and twitch under my skin as though there were bugs trying to escape from the inside. I suppose in reality, there really are. They won’t go down without a fight.

After going through a move back to my parent’s, a relationship separation, and starting my 4th… maybe 5th… Week of IV antibiotics, I’m beginning to grow slightly bitter once again. Today at the pharmacy I had 3 people in a matter of 5 minutes staring completely dumbfounded at the needle in my chest. While they stared they slowly backed away and attempted avoiding my approaching presence. The cashier didn’t look me in the eyes once. She kept her glace strictly on the portacath. What a way to make someone feel…. Just go ahead and treat me like I’m the plague why don’t ya. I am growing tired of all of the fearful stares… It sure hurts to know what I must look like to them. A pale and very, very thin 22 year old with a needle sticking out of her chest. Yep, I definitely look sickly. But you know, I am human just as all of you are… and I guarantee you that if I were horrifically contagious I sure as hell wouldn’t be walking into a drugstore to buy my son’s diapers and baby formula.

I’m just waiting for the right moment to snap at someone.

I’m waiting for my blissful opportunity to be questioned at what exactly is wrong with me. Then again, props to them for having the guts to even speak to me. The next time I’m stared at like the ugliest thing you ever did see (which will probably be tomorrow), I’m going to say, go ahead, why don’t you just ask me what this is and why I look like a zombie? What are you afraid of?

And then I want to continue my story with “Oh yeah, well…. I have testicular cancer.. Don’t bother to ask how.” HA.

The one good thing about all of this is that the second time around, you kind of know what to expect. You know the weird reactions that you’re going to get from people. And this time, you better believe I’m going to take advantage of this situation and be an entirely unnecessary asshole to everyone who does alienate me.

I guess in the end it’s better to make lightly out of a rather depressing situation. Or at least try to. Maybe I’ll tell them I am contagious… And maybe they’ll spend weeks upon weeks just waiting to get sick from me “coughing” on them. I sure hope karma doesn’t get me for that one. I hope she’ll realize that I’m going through enough hell right now to make up for any practical jokes I might play.

We will see....