12-27-12

Its’ been a while since I’ve written in here…. And for a good reason.

It is rather difficult to come up with the right words to say on this topic anymore, let alone any words at all. How do I inform the world of this when I can’t accept it myself? I wish I could write in here and give people hope, awareness, and faith. I wish people would gain strengths from reading these, but how can they when I’m constantly the bearer of bad news.

I want to write that the IV’s have worked and that I am getting better. Slowly, but surely, things are moving forward. I want to tell you that my life has finally gained composure and is beginning to look up. I want ever so badly to tell you that all of this will soon fade away like a bad dream and that I will be able to move on with my life at last. I want to help others with this, but how can I when I can’t even help myself? It is quite a frustrating position to be in.

My shoes are filled.

This journey has been too long, but not long enough. I still want to walk down this road a ways and see what’s around the bend. But I am just a mere field mouse running in circles below as a hawk circles above.. just waiting to plummet from the skies and introduce me to my impending fate.

The truth my friends… I agreed to tell you all the truth this time.

I agreed to allow you to see the Megan behind her pretending. The infamous pretender that I am.


*It’s too hard for me to just accept what is happening to me.*


Yet, the truth for me is hard to swallow. Like swallowing a jagged pill followed by a jar of rusty nails. And yet, there is no avoiding the truth now.

From following a brief post here or a brief post there, most of you can acquire that I haven’t been well. That my body is too weak to continue treatments of any kind at the moment.


*This isn’t fucking happening to me.*


My bloodwork shows malnutrition. My stomach is in knots.. constantly. My immune system is weakened and my body isn’t reacting well to the IV medication Doxycycline. Rochephin about kills my gallbladder and I’m nowhere near strong enough to handle the “big guns” Vancomycin. Claforan made my hair fall out in clumps and my skin turn blue. I have an immunity to Zithromax from being on it too long. But to get down to the point.. I’m too weak to handle the dosage I’ll need for any of these medications.


*Fuck….*


Ehrlichiosis . Babesiosis. Bartonella. Lyme. have all taken over my brain.
My body is rejecting nutrients, no matter how much food I force myself to eat, causing me to lose weight instead of gain.


*How can this be happening……*


My stomach is too sick to handle supplement treatments. Oxygen therapy isn’t enough. I have a heat intolerance which makes heat therapy impossible. Acupuncture… tried it. Detoxing. Been there… done that.

Your gallbladder is fine, they say. Your stomach looks great, they say.

Then why am I unable to remain conscious?

Ovarian cyst? They say. We’ll get to the bottom of this, they say.

Then why am I taking test after test with no answer?

We’re unsure…… they say. But we’ll keep searching. Maybe its H pylori.

I’m not a fucking guinea pig. And am tired of being treated like one for the last 20 years of this.


*I’m so tired……*


I’m so.. so tired.

“I would love to go back to go back in time to when we used to live at John’s old place…” My parents say… Reminiscing about the past. “Just for a day or two..”

I would like to go back in time to when I didn’t feel like a science experiment. When my aches and pains were explained by a simple virus or ear infection. When “she checks out healthy” was the conclusion of my doctor’s appointments. But that time in my life was so far back, that I cannot remember. 20 years…. And I’m 22.

And I never thought it would end like this. After 20 years of fighting, one can only expect a happy ending. One can only dream of beating this and moving on…. To make some kind of colossal difference in this world and be famous for it. And maybe live a somewhat normal life on the side…


*What is normal? Can anyone even answer that question..? I doubt it. Self centered, unappreciative, gluttonous jerks.*


Not to turn my attitude around, but all of this is so surreal to me, that I can only naturally hang on to even the smallest bit of hope.

“I’ll get better…. I have to.” I say to myself. Every day. Every damn day for the last 20 years.

And its only human nature to feel hope for anything.


*I’m sorry for being so unkind up there…. I really am.*


But why this? Why Lyme Disease. I’m such an impulsive person, you’d think it would have been a little more random than this. I guess there’s still time to find out. Maybe not much, but enough. After 20 years of fighting this, and after 20 years of making it by, you’d really truly grow to believe it would be something else.

“She won’t make it to her 16th birthday..” they said.

“Something has to change, or…… or she’s not going to live.” They said.

Hey fucktards, its’ been 6 years since my 16th birthday. Almost 7.

Maybe I just hung on to make my point proven. Maybe it’s because I’m so damn stubborn. “You can’t tell me what to do….”

Maybe I want to do this again this time… and though chances are slimmer, I have my faith.

Because nothing is impossible with God. But everything is impossible without Him.

I cannot express to you what it feels like to have no control over anything in your own life. But I suppose I will have to find comfort in resting my life in the arms of God. Because at this point, that’s what it has come down to. Because the decision is beyond that of this world.

*I’m dying. .. ….*

12-4-12

My stomach has been sick for hours and sleep is looking impossible tonight. Sitting in bed playing old school arcade games on my laptop brings back melancholic memories.
I’m unable to lie down. It’s as though acid reflux were keeping me from doing so, but the pain is so much more than that. The feeling is similar to that of a stomach virus except without the body aches and everything else that comes with. My body’s temperature keeps fluctuating from hot to cold as if it isn’t content with either one. A small bead of sweat slowly creeps down my face as I persistently try to shift my concentration elsewhere but fail miserably.

I doze off for a second or two while leaning against the headboard of the bed. I hear my phone beep and as I look over to check the text I feel somewhat queasier than I had before. Yep. I was going to puke.

This was it. I couldn’t take it anymore. My ultrasound for my gallbladder was on Monday, but only being Tuesday night I wasn’t willing to wait that long in this kind of agony. I tiptoed down the hall to my mother’s bedroom to awaken her and let her know that I’d be at the hospital. It may have been 2AM but sleeping was useless anyways.

As I made my way down the stairs I began to feel a bit lightheaded. I was definitely going to puke now. I walk into the kitchen to grab a quick glass of water for afterwards and a wet towel for my sweating forehead. My dad was half awake lying on the couch when he questioned my appearance so late into the night. “What’s wrong Megan? What are you doing up? It’s nearly 2:30 in the morning…”

“I feel like I’m going to puke.. I am going to puke..” I mumbled while making my way to the bathroom. I’m walking past the couch where he lays and I find myself looking over at him briefly. In that moment my head felt even hotter and my entire body began to sweat. I could hear soft mumbling noises in the background but sound was growing dim. Sound became nonexistent. I shifted my weight towards the couch for something to grasp.. I lost hold of my glass.

“Megan, I’m soaked!! This water is cold! Megan! Are you alright?? What is going on??? Megan????!”

I hear the sound of my dad’s voice with frustration and annoyance. I come to realize that I’m slumped halfway over the couch. Just starting to gain consciousness back.. “I’m really sorry dad.. I’m really sorry…” I squeak out… But there was no sound. I stand up and make a motion at grabbing the counter top nearby and say “I can’t hear anything, dad. I can’t hear…”

Everything goes black.

I open my eyes and I’m on the ground where I once stood.. I’m completely drenched. I was lying in a puddle of water and was soaked to the bone as if I had just stepped out of a swimming pool. What was going on?

I see a light on in the foyer and hear my dad’s voice frantically yelling. “Rochelle, ROCHELLE! Wake up!! Come quick! I can’t get Megan up. Rochelle something is wrong. She’s passed out cold.”

I hear my little girl’s soft cry emerge from her room as she awoke from all of the chatter going on. I wipe the sweat off of my forehead and stand up. Everything is in tunnel vision as I make my way over to the staircase. I only managed to get out “Is Autumn alright? Is everything alright?”

Everything goes black.

Once more I find myself on the ground, except this time in the foyer. What was happening to me? I see my mom coming down the stairs saying “Bruce, she’s awake. She’s awake.” I look around the room confused and as I try to stand again my world goes black once more.

I’ve given up this time. I awake on the floor with a pillow under my head. The pillow is sopping wet. My mom is holding my hand and looking at me with worried eyes. “Megan, stay there. Don’t try to move.”

That’s when they start. The convulsions. Those terrible unwelcoming convulsions…. How I hate having them. I had gone over a month without having one and this just ruined my record.

Once my body had stopped I began to cry. I didn’t know what else to do. I wanted to know what was happening to me but nobody around me had any answers…. And the look on people’s faces when they’re terrified..

Its’ one thing to see someone terrified about something, and it’s a whole other ball game when that person is terrified about what is going to happen to you. It’s an “Oh shit” moment to the extreme. It’s a “What the hell do I do now?” moment.

The voices… the talking… Everything is happening around me and all I can seem to grasp is that 911 had been called. I’m helpless and quite frankly, it sucks.
As I see the lights speed up the driveway I try to come to my senses more and more. Two men walk in and each one immediately begin hooking me up to things. I have my eyes closed as the light makes them burn. Everywhere else had become numb. I had gone into complete shock of the situation. The men kept asking me questions… the same questions… over and over. They wouldn’t let me go a minute without talking to them or answering to them. The last thing I felt like doing at that moment was to talk when I had no idea what was going on.

I attempt to stand to get onto the stretcher and I feel my head start to spin. I kept losing my focus as they strap me in tight. They continue to ask me those questions… I continue to attempt to answer. The entire way there was just question after question. There was no silence. There was no peace. Just a meaningless conversation of undesirable questions.

All of this to find out that I have a cyst.

To go to a hospital to be questioned more about my Lyme than anything else.. As if Lyme Disease had never been heard of before.

To think to myself, could all of that really have been caused by a cyst? Is the Lyme a factor? Or something else that we don’t yet know of?

My unanswered questions make me nervous. I’m only 22.

And then I know that I’ll have to answer. I’ll have to find answers for family and friends. I’ll have to provide them with the information they seek and make them aware of the situation and comfortable with it. I am regretful of this, because it just makes the public see me more of a cripple than they already do.

In my mind I’m this young and healthy girl with goals and aspirations. With spunk and energy. With a crave for adventure and never turning down an opportunity to be so.


But in reality, I’ll probably never been seen as that girl.. I’ll never be given the chance to truly be me.

12-2-12

I wonder what it feels like to not be tired. It’s been so long.

5 days since I started the Doxycycline.

5 days and I’m waiting.. Hoping.. To feel better.

After this, I’m out of ideas.

Someone boil me a bathtub of water so that I can lay in it and burn the ill away. The night time body aches are so severe and I’m refusing pain medicine the way a junkie would heroin. Though, I may have just a slight upper hand when it comes to my will power vs. a junkie’s will power.

It’s not that I “need” the pain medicine because I “want” it, it’s because I feel like the entire perimeter of my body is bursting into flames and being pierced by knives all at once.

Rant.

Give me a diversion.

End rant.

I can’t help but to laugh at myself as my thoughts wander. “It’s not that you’re terribly uninteresting but…… Did you see that man wearing a top hat and monocle riding along on that Clydesdale?”


Just kidding...

But in my mind there probably was a man wearing a top hat and monocle while riding a Clydesdale. And you can’t blame me for getting distracted by something as interesting as that.

..................................................

There I go again losing my head.

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....

10-25-12

It’s the days like today that keep me going.

I wish everyone could see the world through my eyes. Not in the pain that I have to suffer, but to see how beautiful things can be. To be able to appreciate them as I do.. After being so close to having my life taken from me so many times..

I guess this is one of my gifts.

I guess this is a specific trait that makes me different than the rest of the world.

Days like today….

It’s these good days.. These days where I have a glimpse of what it feels like to have my life back. And God, I love them so much. I appreciate every given second that I am allowed of days like today and I’ve learned never to waste them.

It should be like that for everyone… Every single day.

Maybe I was given the gift of seeing the world as this magnificent opportunity of wonder and beauty because of what I have to go through. I just wish that I could share with you what I see.

Life is such a gift.

I don’t know why we waste so much time doing things that make us feel trapped or uncertain. It seems to be the nature of our ways with being human, but I feel that should change. Being happy isn’t impossible for anyone. Even for the people who seem “stuck”. It is all about making a decision or two. And maybe I should take my own advice, maybe I am the hypocrite in the end.. But these days remind me of those changes that I can make in my own life, and that there is hope. There is hope that I will make it through this sickness, through this down time of my life. Today I saw a glimpse of what it will feel like to have my life back. I saw that getting better from this illness is once again a possibility for me.

And then I realized…. If I can defeat this, this will be the 3rd chance I have been given to live again. And that… This time, I need to let God show me where He wants me, rather than where I think I need to be. And I can only pray that I am guided in the right direction because this time… this time, I can’t afford to screw up.

I will get my health back to what it was.. better than what it was.

I will have my life back.

I will be me again.

And I will be a much wiser, more caring, appreciative, goal driven, loving person than I was before.

“Bleed in your own light
Dream of your own life
I miss me
I miss everything I'll never be
And on, and on

I torch my soul to show
The world that I am pure
Deep inside my heart
No more lies

A crown of horns
An image formed deformed
The mark I've borne
A mark of scorn to you

Consume my love, devour my hate
Only powers my escape
The moon is out the, stars invite
I think I'll leave tonight

So soon I'll find myself alone
To relax and fade away
Do you know what's coming down
Do you know I couldn't stay free?

I shall be free
I shall be free
I shall be free
I shall be free
I shall be free
Free of those voices inside me
I shall be free
I shall be free”


Smashing Pumpkins- Rocket

10-22-2012

22 days since I’ve had my surgery.

13 days since I’ve started treatments.

9 days.

It has been 9 days since I first made the acquaintance of this persistent control freak of an asshole that they call “a fever”. Seriously? You call this a fever? I always thought fevers were something that broke over a matter of a couple of days… Matter of days meaning like…2 or 3.. But 9? That’s not a fever, that’s a takeover. A personal invasion. That’s trespassing on private property, setting all acreage aflame, and then pissing on the ashes while laughing.

Hey guess what you guys? World War III called. He said he’ll be taking place somewhere underneath your skin. Tell all of the VIP pathogen’s that they’re invited. There’s going to be roasting flesh and internal organs to snack on.

I mean, hell, there might as well be by now…. I can hear my insides screaming.

Oh well. At least I still have my sarcasm. And that’s all I need.

Ha.. ha…
Ha…..
*choke*

It’s the moment of self realization. The moment that this is all too real now. This has been happening for a while, but somehow it’s becoming more and more certain for me.

I’m lying there on my back and all I can do is daydream. Anything that takes me away from the present.

This is the part that I feared. This is the part that made me cringe when I heard “port”. This is the herx.

It is hard to explain how terrible I am feeling at this point. There really are no words that will make you understand what this feels like. Anything that I could write just wouldn’t make sense. It would sound like I am telling an exaggerated story.. since I’m feeling witty tonight, let me humor you a bit with an example.

Here’s the story…
George was a middle aged man driving on his way home from work when he realized that he had nothing to eat at home and needed to make a quick stop into the grocery store. The grocery store was about 10 miles past the exit he would normally pull off onto, so he could see that he wasn’t going to have enough gasoline in his car to make it. George stopped at a nearby gas station, managed to fill up his station wagon, and then continued to the store. He then shopped for food and afterwards made his way back home where he enjoyed dinner.

Here’s the exaggerated version…
George was a decently young man in his prime years of life enjoying a peaceful drive home from work when suddenly ninja’s jumped off an overpass landing on George’s car causing him to swerve off the road and into the grass. George grabbed the recently sharpened martial arts sword that he so happened to have in the trunk of his car and bravely took on the dozen of ninja’s who were fiercely attacking him with their… ergh.. “ninja-like-weapons..”… Anyways. Once George was finished bathing in ninja blood, he conjured up an appetite. When realizing that his fridge was empty because yesterday a grizzly bear broke into his apartment touching nothing except for only the delicacies of the fridge, he decided to make a pit stop at the grocery store. The grocery store was practically 1000000000 miles past the exit he usually takes, so George felt that it would be wise of him to fill his 2013 Ferrari F12 Berlinetta with a tank of awesomeness. While driving into the gas station, George’s car was being mauled by naked super models! They all wanted to hook up with George and ride in his masculine vehicle. One by one George had to make his way through the models with excuses about why he was in such a hurry, but maybe next time *wink wink*… He was then able to continue his journey to the grocery store.
While picking up a can of Green Giant spinach, George was suddenly summoned into Medieval Times where he fought a fearsome dragon for the town’s people of …umm.. some place Medieval. Anyways, in return for George’s bravery, the people of the what’s-it-called-town told him not to worry about food shopping, and magically made food appear in George’s fridge at home, also sending George home along with his 2013 Ferrari F12 Berlinetta. There he was able to enjoy a manly feast of bear meat (yes, the same bear that raided his fridge yesterday).The End.


Now that I have just about wasted your time and mine, I think I can sum this up by saying.. I really feel like hell today, and I wish my life were an exciting exaggerated fairy tale.. But I’m glad that my name is not George.

10-19-2012

I think it is safe to say that over a time frame of the last 6 months or so I have been down into the lowest of lows that my life has ever seen. It is pointless to regret things as you cannot change your past, but just one life decision changed could have stopped so much from happening.

I often think of myself as one who believes that everything happens for a reason, but for the situations I have stumbled upon lately I am beginning to wonder what the purpose is for any of this.

It’s not just Lyme that has taken so much of my life away, but also some of the hidden pathways I have walked down. I’ve always been an adventurous soul, but I fear that my curiosity now has me feeling stuck. I’m at a dead end looking behind me wondering where I am supposed to turn now. Is there a detour to this broken life I have created for myself and my children? Are there bridges I can build to cross the heavy currents of the streams below?

It is hard not to reminisce of the time in my life where I had my life back. After struggling with my health for all of my childhood I had a grace period. Not only was I at the top of my game (or as top as it gets with Chronic Lyme) in my health, but I was on my way to achieving goals I had set for myself many years ago. I was living in a place that offered me so much, friendships and numerous opportunities for my life. I was surrounded by people who supported me with where I was going in my life. And I thought I knew what true love was, and maybe on my end, I knew.. But I feel like I threw so much away when I moved so far from everything.

I chose to move for many different reasons. I felt that the grass was greener, so to speak, on the other side when in fact the grass wasn’t any different there than where I had left. I jumped the fence into an unknown place and left many people who truly cared about me behind in hopes to find newer or more exciting adventures.

In reality the adventures were definitely different, and some of them, yes, exciting. But I had jumped into a relationship with someone who will never comprehend me. A relationship that was never mature enough to take on two children. A relationship that has taken the health that I once had and ripped it into shreds, and threw me back into the pits of my despair. I jumped into a relationship that has shown me what it is like to love, hate, and make decisions I never thought I would have to make.

Out of all that has been, I have received two of the most wonderful and scary blessings I could ever endure. My children. Though I love them more than life itself I cannot come to think how I might do this alone. How I have been doing this almost completely alone. How it would be easier on everyone if we were prepared for this hurdle in the first place, but if life was planned then where would the excitement be?

On the other end of the spectrum, I find myself at my lowest of points. My once built up never to be knocked down self esteem has crashed and crumbled beneath me. Self worth is something that I’ve forgotten. And my short lived stable health seems to be something I only once dreamed of, but was never a reality.

I may be beginning to sound pessimistic. But the decisions I have made over the past 4 years were purely out of optimism and hope that things would work out. That I would get better. That everyone would be happy. I have changed some, not so much taking away my optimism completely but giving me more of a reality face slap. My eyes were opened to what is truly happening around me and I’m not quite sure where to go from here. I have people pulling me one way and others pulling me another, and I know which way I need to go…. But I feel as though I lack the courage to do so. For now moving along seems impossible. And wishing I could go back to when decisions seemed easier to make is getting me nowhere. It seems so much harder to make life decisions for 3 people when you hardly feel well enough to get out of bed each day.

I suppose I’m not the only one. I suppose there are many others like me. And when the Lyme is making me feel so much more distant from my surroundings it makes it all the harder.

Here is where I give it to God. Whatever faith I have will be of use right about now.

10-17-2012

After having two children any mother would gladly take the compliment “Oh you’re so skinny. You had him 9 months ago? Noway! You’re too tiny to have had any babies..”

But when you’re this skinny…

When you’re losing weight so fast that you’re afraid to step on a scale.

When you approach the end of the day to realize that you’ve only been able to force down portion sizes smaller than that of the average toddler…

Well…. When that happens, any noticeable comment about how thin you are becomes an embarrassment.

When you’re this skinny the only comment made on your after-baby-weight is just a hint that you need to put on the pounds. If only they knew how hard that I try….

My stomach is in knots constantly, and I force myself to eat whatever tiny portions I can coax down.

After I eat, I wait. I wait for the stabbing aches and pains of the ulcers to send my stomach on its daily routine of rollercoaster rides.

I see everyone else around me snacking on things that I want. Things with wonderful smells or visually appealing textures or colors.. And I begin to hate myself.

I look in the mirror every evening and am reminded at how much of me seems to be withering away once again. I am reminded of the short period of my life when I weighed what I was supposed to. When I could eat breakfast, lunch, and dinner with no pain. When I could maintain a healthy and balanced weight. And I am also reminded of the hardships that I faced my entire past with.

Growing up I was always too skinny. I always stayed a steady 10 pounds underweight throughout my entire childhood which eventually led to only weighing 80 pounds at the age of 14. At 15 I was only 60 pounds.Towards the end of my 16th year I was gaining weight. I had filled out my figure and was a perfect and healthy weight for my height and size. I was happy and had energy every single day. In college I was able to run 7 miles every day and maintain an exercise routine.

And here I am again…. A mere reflection of a stick. Ha.

One day I will get back to what I was those short 4 years I had stabilized my health.

One day I plan to be able to eat again. And run. And to have the energy to accomplish whatever goals I set for my day.

But for now I’m stuck poking at the untouched dinner on my plate hoping that maybe tomorrow it will look a little bit more appetizing than it does tonight.

10-13-2012


The rage.

You never understand the rage until you’re in it.

It begins with a rush. It’s like warm brain freeze that turns into a dull continuous headache.

My mind feels disconnected to my surroundings. I care less about the things that were important nearly 15 minutes ago.

Then there’s the rage.

The ever so infamous rage.

Everything matters. Nothing matters. I feel as though I’m drowning in my emotions. I cannot sympathize. Self worth is nonexistent.

At that moment I want to disappear from my existence. I start to disappear….. I’m gone.

I’m now an emotionless machine. My soul has disconnected from my body and I’m watching as my body fights for survival against the swelling of my own brain. My actions are a result of neural excitability… electrical impulses that are sending mixed signals to different parts of my brain. I don’t know how to act or how to feel. Everything is purely robotic. It’s like watching an angry baby scream and cry because they can’t yet tell you what they want/need.. they can only communicate by screaming.

When you have neurological Lyme, you’re forced to pretty much live in survival mode. You’re forced not to care or even think about certain stressful situations. To fade out. Your infected mind cannot handle it.

So when I tell you that “I’m half there today.” I’m not hinting to you that I didn’t get enough sleep that night and missed my morning cup of coffee. I am completely serious. My mind is only willing to work at half of its regularly working potential. Half of my brain is forced to ignore what is going on in the outside world….. to ignore any current surroundings because it is fighting for my life.. It is fighting an infection that has been taking over my body for 20 years.

I wish that I could show you what it feels like. I wish that I could help you to understand this part of what we go through with chronic neurological Lyme. But this is just one of the many silent sufferings we have to endure. One that cannot be seen by the naked eye.


And the only two words I can leave you with are: brain dead.

Oct. 1, 2012


It was a cold and gloomy morning on our way to the hospital. My hair was as black as the night and damp from running through the Autumn rain. As we waited in the waiting room I’m feeling alone and lost. It was then that I began asking God why. Why do I have to go through this again? Why can't you allow me to die this time?

An older lady with a long grey sweater calls out my name. She's standing at the end of the room in front of the last registration office of the hallway. I stand up and look back at Andy, who is oblivious that my name was even called. I turn back towards the room and walk to the lady. She smiles and tells me that she's the one who'll be checking me in and gathering my insurance info.

It seems like forever while she's gathering my information. She tells me the room number that I'll be staying in and makes me repeat my personal information to her to make sure she's got the right person. She then goes on to ask me what seems like a million questions about why I am there, and what Lyme Disease is.. what it does... what the symptoms are. I calmly and respectfully answer every question to the best of my ability, even though the last thing I want to think about is why I am there.

When the questions are all through, she picks up the phone and calls for another woman to come and talk to me. As quick as she hung up the phone a blonde middle aged woman in a white lab coat steps into the tiny cubicle registration office. I notice a ring on her finger the size of her wrinkling hand and a concerned smile on her face as she approaches me. She sits next to me in the chair where Andy was supposed to be sitting, and explains to me that she is anesthesiologist who will be mixing my particular dosage and keep me stabilized during the procedure. She then goes on to ask me a million and one questions as the lady before her did about Lyme Disease and what my symptoms are.. Her questions, unlike the lady in grey, were much more in depth and serious. All the same though I didn't really feel like talking about the reason why I was there, or the reason why I was going through anything. Aggravated, I answer her questions short and sweet. After the last question was asked her face grew more serious. Less cheery. More concerned. She looks at me and says quietly, "I'm actually asking you these questions about Lyme for a more personal reason..." She pauses and then continues.. "My husband was diagnosed with Lyme. He was sent to Vanderbilt hospital but the infectious disease told him that he cannot contract Lyme if he hasn't recently been out of the country. I'm not sure what to do because he's really sick and.. and nobody will treat him." I then laughed lightly because Vanderbilt turned me away as well. For all of the 20 years of having this Vanderbilt has stuck by the CDC and lied. Lied about all of it to save their own asses. Lied and sent people, like myself, out to die.

I turn to the lady in white with a more serious look... I tell her not to worry, but that she needs to take my advice. I give her the name and numbers to my 2 lyme doctors that I have. I tell her a little bit more about lyme and the controversy, which is why her husband is having a hard time finding treatments. I tell her that her husband needs proper treatments, or that he won't get better... but then I give her hope and say that as long as she takes my advice, as long as she takes him to one of these doctors who WILL treat him properly, he will be fine. And I ended it saying that I can't stand the thought of allowing another soul to go through the hell I have been through... am going through..

I see the relief on her face. I see the hope. I see the excitement that she is going to be able to find help for her husband. For that brief moment that she thanks me right before walking out, she looks into my eyes. Our eyes meet and I see so much deeper into her. I see that I really have truly just helped someone else who has this. And right then and there, I think, if I had never stepped into that hospital that morning.. if I had never gone to have surgery.. if I wasn't sick still, I would have never been able to help this man. And I feel so deep inside of myself once more that, this is what I am here to do. I am here on this Earth to suffer. I am here to go through this. But its not going to go to waste. All of the pain that I go through will be used to help others. I will be able to help others with this. And at that point, as another nurse takes my arm and walks me up to the 6th floor to my room... I am okay.

I am okay with this.

I know that this is where I am supposed to be right then and there.

----------------------------------------------------------------------------



I’m abruptly awoken to the sound of nurses scrambling around my bed. What’s going on? Is what I wanted to say, but the lingering anesthesia in my system kept me quiet.

The more I came to, the more I began to realize what was going on around me. My body was shaking uncontrollably in the bed and I had a nurse holding me as still as she could onto my left side. I made an attempt to make eye contact with one of the nurses so that she would notice that I was conscious. As soon as she noticed me she began questioning me. I saw her lips move in the same movement over and over but no sound yet came out. I kept watching as best as I could around the convulsions of my body and finally started to hear what she was repeating to me.

“Are you having a seizure?? Is this one of your Lyme seizures??”

It was then that I completely came to as if I had never been asleep at all. I glanced down at my hands which were crippled near my chin. On the right of me was an older nurse pushing down on my arm and waste trying to hold me still.

I looked back at the nurse who asked me the question and remembered the questions they had asked me before putting me under anesthesia.

You see, when you’re being put under by anesthesia the anesthesiologist is obligated to ask you if you are at more of a risk for certain complications. Having seizures is one of them…. Well, I’d never been one to have seizures until recently so I played it off pretty cool. I told them that I had them rarely, but that they were due to the Lyme.

I guess I may have fibbed a little when I said that they were rare…. Ha.

“Yes” I squeaked out while I attempted to nod my head but failing miserably as it shook all over. Yes, I was having a seizure. How embarrassing… Right when I was hoping that everything would go smoothly.

I almost feel like I shouldn’t have told her. I mean, I think it was pretty obvious at that point what was happening with me but when I confirmed it I swear 5 more nurses came over to my bedside to help. Awesome….. Not.

Each one of them was pestering me with questions.

*Just an FYI for nurses.. Please don’t pester someone while they’re having a seizure. It’s hard enough to talk. Try to make eye contact or contact through body language.*

“What does it feel like?” the nurse asked. The same nurse who asked me if I was having a seizure…. Was she new at this?

“Like my brain is melting out of my ears” I responded.

“ICE! Get this girl some ice!!!!” she yelled.

FINALLY. Someone is taking some action. Don’t just stand around and play the questions game with me all day…
It wasn’t long after a cold ice pack was placed onto the back of my neck that the convulsions stopped completely. At that point I was too tired to speak anymore of it. I was too tired to answer questions. I was too tired to explain why. And I just closed my eyes and waited to be wheeled back to my room. Up the elevators and around the corner to room 610.

9-27-12

Just a matter of moments before it happens. I am aware of everything.
Imagine the life of a puppet. Their body is on strings controlled by a being much stronger than them. Every precious move they make has been decided by someone else. The puppet has no say of the decision of their bodily movements. Instead, they are forced to just hang there and except whatever fate the puppet master chooses for them.

I sit there as my body shakes uncontrollably. Attempting a quick glance down at my hand, I see how deformed and unnatural looking it appears. It’s like looking at a crippled up mummy.

My body feels cold. I feel so cold as if I were lying in an ice bath waiting on my impending death. And as quickly as I was cold I feel hot. The hot sizzling feeling creeps up my neck and around my skull. At any moment my brain could melt and drip out of my ears. My stomach is queasy and the parts of me that aren’t flopping around are as stiff as a board mimicking some kind of living rigamortis.

It hurts.

It hurts to breathe.

The strength of what seems like a full grown man’s is what pushes and pulls my neck in every direction. I’m fighting with myself at this point. Fighting to regain control over my own body.

My eyes hurt and I begin to feel dizzy.

I am.

Aware.

Of everything.

An icy rag touches the bag of my neck and I am comforted by some relief. Slowly I gain control back. Slowly..

As things return to normal I am reminded of the promise that I made myself as a teenager. I then take a look at my sleeping son and daughter and am reminded at why sometimes promises, even to oneself, are made to be broken.

I am sore.

I am tired.

I am wondering how I’m going to do this….. again.
And I’m just taking it one minute at a time.

2012

“You’re such a great little pretender.” My great grandfather Langenburg used to tell me. That is the one thing I will always remember him by, and maybe the best judgment anyone has ever made of me. I’m just a pretender.. And a rather good one, at that. Though, I really wish I never would have subconsciously forced myself into becoming such a skilled pretender.

It’s about damn time I stop pretending. Yes… It stops now. Here’s the truth.
I look in the mirror and do you know what I see? I see an average 22 year old young woman with fair skin and green eyes. I see dark hair and a crooked toothed smile. I am slender but look relatively healthy. I can imagine a person meeting me and thinking “She’s shy, but seems happy.” “Outgoing, but a little bit naïve.”

In a first impression I can only imagine how a person might characterize me. All of which are what I want to be. This is who I have forced myself to look on the outside. You see, I’m so good at fooling you. I’m so good at making you think I’m “this” type of person. That’s right everyone, I’ve been FOOLING you this whole time.

In reality I’m not very shy. I’m not shy at all. I have a shit ton to say but no one who will listen. I’m not happy, I’m thankful. I’m miserable in my own skin. Outgoing? Try bitter. Naïve? I am aware of more than you think….

You look at me and you see the person I have made you think that I am.

I wish so much that I could look the way that I feel.

When you have cancer, you go through chemo. When you go through chemo you lose all of your hair and your skin turns pale. You look like the walking dead and everyone can see your suffering. You walk down the street and someone glances at you for a second, with your bandana tied neatly around your hairless scalp and dark circles under your eyes as if you have become visibly lifeless. At that moment, that person has sympathy for you. They smile at you sweetly as if to say “Stay strong, and God bless you for all you must endure.” They may or may not know the terrible pain you go through every single day of the unbearable treatments that you’re forced to go through but for that very moment they stop and they try to imagine. They try their hardest to imagine what it must feel like for you and how strong you must be. They honor you for this burden that you must carry. And for that moment, they become angry for you. They’re only a stranger but they’re angry for the pain and suffering you have. For the fight that you are so desperately hoping to win. And with those sudden built up feelings, they think for a second… We have to do something. We have to stop this from happening to others. It’s not fair. It’s not fair.

Because you see, it’s really not fair.

And you continue walking knowing the acknowledgment that was given to you, with your head held high and suddenly…. Suddenly you feel pride. You’re proud that you may have potentially given someone the motivation to actively DO something for such a humble cause. That your pain and suffering isn’t going to waste. That, even if you die, you’ll know that you helped someone, somewhere, try to find a cure so that others don’t feel the same ungodly pain that you and many others like you feel.

The life of one who has cancer is beyond painful. They endure so much. I have seen close friends and family members pass from such a terrible sickness. But they have help. They have millions of dollars raised each month for a cure. Imagine having a disease that’s shoved under the rug constantly. Nobody knows what it is, and those who do don’t realize the severity of it.

I’m a great pretender. I’m a fantastically fabulous pretender. As a child I had these hopes and dreams of the person I would become. I had my teenage years all planned out in my head. All of the dances I would go to or the boys I would date. I had my childhood thought out. All of the many things I wanted to say or do. And growing up I have pretended my very hardest to be that person that I so badly wanted to be.

Here’s where you begin to negatively judge me.

Here’s where you wonder: “Why can’t she just be herself and be happy..?”

And here’s your answer.

If I looked how I felt. I would be lifeless.

And for once I’m going to open up and for the first time ever, truly tell this world how I, Megan Marie Mastrobattista (Hunt) FEEL.

I wake up every single morning feeling like I never sleep. My eyes remain heavy no matter how many cups of coffee I drink. With every step I take I feel like my legs are made of broken shards of glass that were glued back together by a 5 year old in craft time of kindergarden class. I pick my children up wondering if my arms are suddenly going to go numb and turn to rubber. If I might drop them by sheer accident.. I can feel the entire base of my spine running down my back as if I were just beaten repeatedly in the back and neck with a spiked hammer. I can feel my throbbing, unstable heartbeat in the back of my neck with my spinal cord connecting the rest of my body to my brain. I can feel my cerebellum, occipital, and frontal lobes of my brain swelling with inflammation causing a constant headache. As of lately I have been wearing my sunglasses indoors almost every single day because my eyes fail to adjust to light causing my constant headache to turn into a daily migraine. With all of the brain swelling I find myself having a difficult time thinking… remembering… gathering the right words to say when I speak and end up making myself look like an unintelligent lunatic.

My vision is constantly blurred. Sometimes it’s better than other times, sometimes I can make out shapes and sometimes I can only see a blur of colors that forms the oceanic view of my world before me.

I feel as though I have pins and needles running through my entire body, constantly jabbing me on and off all over like tiny little knives that are continuously stabbing you.

My mind races and slows down. For instance, today while trying to get the kids packed and ready I found my mind racing.. My thoughts were spinning through my head a million miles a minute, so fast that I couldn’t keep up with them. But through my eyes I’m looking at everything happen as if it is happening in slow motion. I can hear voices slow down and deepen. I watch my kids run in slow motion across the room. With that, I become nauseous and am forced to close my eyes in the hope that things will straighten out before I throw up.

My stomach is constantly in knots. My stomach feels inflamed as if anytime I might vomit up my own internal organs.

I spit up blood from such severe stomach ulcers.

I have chest pains and heart murmurs that come and go as they please throughout the day.

Severe insomnia.

Anxiety attacks.

I have mini seizures that force my body to shake and twitch, usually followed by symptoms suddenly worsening and me balling my eyes out in sheer agonizing pain.

I have fevers of 100 almost every other night due to my body’s failing immune system.

That is the life of someone with Chronic Lyme Disease.

Now that I’ve told you how I feel… I have to tell you. I have to tell you that I feel like this every single day.

These symptoms aren’t occasional for me.

So I tell you, it’s not fair that I look healthy to you.
It’s not fair to me.

Because with that, I am forced to act like the person I would be if I weren’t sick.

Because I make up excuses about why I felt tired or weak while trying to help my brother and his wife move into their new home. It was… Uhm.. Some virus I had recently, I guess I’m not completely over it. *cough* *cough*.. and I’m so damn good at it.

I make up excuses as to why I’m wearing my sunglasses all of the damn time.

Or excuses to my children about why I can’t pick them up right now.. Or take them outside.. Or to the park.

I make up excuses about why I typed something strange or asked the same question 3 times in the last 5 minutes.

I’m a pretender. I will pretend to be the person I want to be. The person I’ve always wanted to be. The person I think you’ll enjoy more.

I pretend because nobody gives a shit about Lyme Disease.

Because Lyme Disease isn’t serious to anyone unless they have it.

With Chronic Lyme Disease people WILL NOT bend over backwards to help you or set you up for treatments. Instead, they will watch you as you die and tell you that you are fine. “You don’t look sick….. Why don’t you go and join a good soccer team with some friends or something?” I pretend because I know I will never get sympathy.. And that nonexistent sympathy will never be used to inspire someone else to bring awareness. Not unless they get it.

With Chronic Lyme Disease you’re forced to LIE about how you really feel. You’re forced to pretend that everything is alright when in reality you’re wondering if you’re going to live.. because quite frankly, you feel like you’re dying. Because you are.

And with this I will say…

I don’t remember what it feels like to be normal.

I contracted this disease in my toddler years. I grew up being sick. I haven’t known anything else.

So before you say “Who are you to have children with being so sick? To add the responsibility of two more lives to care of besides your own? Are you NUTS? To force yourself to pretend to be who you aren’t?”

Is it so wrong for someone to try to live out their dream?

I have always wanted to be the person that I pretend to be. I spent my weekends as a child having sleepovers on pain medicine because I wanted to actually be able to have a childhood. I did my best to get back into public school after my 1st round of IV’s because I wanted to know what it felt like to be a teenager. I moved away with a guy who may never truly love me as much as I’ve loved him because I wanted to know what it felt like to love. I allowed myself to have children because I wanted to know what it felt like to be a mother.

I pretended to be okay because I wanted to know what it was like to be normal.

Now tell me, what’s so wrong with that?

1999- Assistant

Tick. Tick. Tick. Tick. Tick.
The sound of the clock was driving me insane at this point. Its 2:45pm on a Thursday and school is almost out. Time goes by even slower when you spend school hours stamping books.

Instead of spending the last hour and a half with my 4th grade class who had been doing God knows what… I’ve been standing at a little table in the library branding all of the cover’s of the new books with my school’s name. This wasn’t punishment, even though it often felt like it.

You see, I’m usually sent here instead of being sent home.. For whatever reason my acid reflux has been acting up and my bones and joints have made random muscles in my body twitchy recently. I’ll go to school in the morning fine… Sometimes… Other times I wake up feeling like this. I’ll go about my day with my classmates and then randomly I’ll get a stomach ache… A doubled over in pain kind of stomach ache in the middle of class. And then my leg.. or my arm.. or my hand… or my neck will start twitching.. And I’ll cry because it hurts something terrible.. And then get made fun of for crying like a little baby.. And then I’ll get sent to the office because my stupid teacher never knows what to do with me. My school is new, this is the first year it has ever been open, Randolph Howell Elementary, and all or most of the teachers are new and inexperienced as well.. Including mine.

So anyways, I’ll make my way to the office and then from there they’ll decide what to do with me. They almost always have the nurse examine me, and she’ll almost always tell me I’m fine but looks at me as if she knows that I’m actually feeling horrible… So for the first month or so of this they’d call my mom and send me home.. And then after missing so much school they decided to find other tasks in the school for me to do to… well…. I guess to take my mind off the pain until school hours are over with. Today, like most days, I’ve been sent to do someone else’s job in the library. While the library assistant is in her office drinking coffee and surfing the web, I get to complete all of the tasks she’s supposed to complete. Sounds kind of screwy if you ask me.

Tick. Tick. Tick. Tick. Tick. Tick.

2:46pm…

This is bullshit.



1999- Lyme Disease

A few weeks ago I had my blood drawn. A lottt of blood drawn. And today we find out the results. My mom’s been on the phone for a while now..

Mom refused to tell me what I was being tested for, she just said it was going to hopefully tell us what all of my weird aches and pains were from. I’ve been having these aches and pains since I was 2, and now I’m 9… For years I’ve been sent to different doctors and specialists.. For years I’ve been getting my blood drawn every few weeks.. For years I’ve been told that we were hopefully going to find out what was wrong with me.. And for years we’ve been told “We’re sorry, her labs are normal. Good luck to you, though.”

The door opens, mom steps out of the room…. Her expression is blank.
“Hey mom, what’d they say? Am I normal?”

She looks at me as if she’s unsure if she wants me to know…. But quickly just blurts out….

“Megan…. You have Lyme Disease. You have Lyme Disease like I have.. Except… You didn’t just have Lyme Disease. Sometimes there are separate infections that get mixed in with the Lyme, and well…. Your blood work came back positive for just about everything..”

Before I could even have an emotion she says “Look on the bright side, at least we know what it is now and we can get you help! I’ve made you an appointment with my doctor, Dr. Crist. He’s going to help you get better.”


Rickettsia. Ehrlichia, Bartonella, Babesia, Rocky Mountain Spotted Fever, Mycoplasma etc…


My stomach turns and feels all knotted. I feel as though the color from my skin is fading… They say that kids are carefree and handle situations or bad news easier than an adult would, but at that moment I felt a lot older than I was.. “I have an incurable disease… I’m only 9.”

And at that moment on I knew that life was never going to be the same.

1997 : Sweet Tooth

Ever since mom was diagnosed with Lyme disease, sweets were rarely found in our house. Apparently eating sugar made you feel a lot worse. I suppose you would think the same would go for any sickness, but I’m just a kid. I have a sweet tooth, and I feel like I have a right to think that mom may be going overboard by completely banning sugar like it’s the black plague. Luckily for my brother and me, our dad is a junk food junkie. Even though we weren’t allowed to have sugar in the house anymore, my dad always has a “secret stash” that only the 3 of us know about….

“Now let’s see..” I thought to myself. “Sugar cookie, chocolate chip cookie, candy bar…” My choices continued but there is something about my dad’s chocolate chip cookies that made me keep running back to them. They weren’t thin or crispy. They were thick, chewy, and had just the right amount of chips vs. the right amount of cookie.

As I’m working my way through my first and only cookie that day I’m noticing a stomach ache approaching. It seems like every time I eat anything sweet, I get a stomach ache, fever, and body aches. ”Reflux again today, just like yesterday, just like every day” I thought. Acid reflux was my excuse for every ache and pain I had these days. That’s what the doctors kept telling me and doctors are supposed to know everything. At least that’s what my 7 year old brain thought.

1997 : Valentine’s Skate Night



“Oh, my!” said the little flower. “All my friends can come and go, but I must stay in one place.”



“Did you get any Valentine’s at school today?” asked my mom as I opened the car door. “Yeah, but only because everyone has to give the entire class a Valentine.” I mumbled. “Any special Valentine’s from any special boys?” my mom nudged on. “No. The boys in my class are stupid.” I said annoyed. Which was true, and when they say that girls mature faster than boys it surely applied to every boy I had ever gone to school with. “Everything alright, Megan? Did you have a bad day or something?” my mom said looking back at me through the review mirror after noticing my tone. “Yeah everything is fine. My head kind of hurts and my legs hurt. I don’t know why, but I feel okay. Can I still go roller skating with Tiff tonight?” I said trying to change the subject. “Yeah, call her when you we get home and make sure she’s still going” said mom. Tiff was one of my best friends. My first best friend. Best friends since I was 2 and she was 3. She lived a couple of houses down from me and we spent almost every weekend playing. Tonight was Friday night and roller skate night for my school at the skating rink.

“Alright boys and girls line up from youngest to oldest in the center of the rink for limbo! If you don’t want to play, please skate off the rink and sit on the side until the game is finished” announced the DJ. “You wanna play or sit this one out?” my friend Tiffany asked me while we stood around watching other kids line up. I felt funny. My legs were still aching for whatever reason but this was my weekend and I wasn’t going to let anything get me down. “Sure, let’s go!” I said racing Tiff to the rink.

5 minutes passed by and half of the kids were already out of the game or disqualified for acting up, but we were still in it and I was getting tired. “I think I’m going to bail, come find me when you’re done” I said to Tiff, skating off the rink and over to the side. My legs were aching something terrible at this point and were beginning to feel like jello. My head didn’t feel right, I couldn’t think straight. I didn’t feel sick but what in the world was going on with me? “You okay?” Tiff said while she skated off to the side to see what was up. “Yeah, I don’t know. I don’t feel right. My legs hurt really badly” I said. “Maybe you’re just tired from skating. Let’s sit here for a few minutes and rest. You’ll probably feel better by the end of the game.” Tiff encouraged me.

As time went by I began looking around the roller skating rink as if it were another dimension. Every time someone spoke it sounded like they were being sped up. Everything sounded… Fast? Voices, music, just sounds in general. Yet when I looked around it seemed as if everyone was moving in slow motion. And when I tried to speak or move I felt as if I were in slow motion myself. My mind wasn’t right. I needed to go get my mom. “Tiff, where’s my mom? Do you see her?... Do you mind going and getting her?” I asked. “Sure, is something wrong?” she looked concerned at this point. “I’m not really sure” is all I could muster out.

As Tiff went to go get my mom I felt like a million years were going by.. Watching everyone skate super slow, so slow that the colors that they were made up of just kind of blurred together, yet all of the noises were sped up and warped.
“Megan, what’s wrong?” my mom asked rushing over. “I don’t know mom.. My legs hurt and my head feels funny.” I said.

Before I knew it I was limping out the door and waving to bye to my best friend. We were supposed to have a sleep over that night, but since nobody knew what was going on with me I was taken straight home and told I was probably coming down with the flu. The flu? I didn’t feel like I had the flu, but at the same time I didn’t feel “right” either.

“You’re home early” my dad says as we walked in. I immediately limped my way up the stairs and into my brother’s room. He was watching some movie and I figured since the rest of my night was going to suck I might as well watch whatever he was. I proceeded to lay down on his bed while he sat across the room fiddling with some papers. It was then that I remembered I had some Valentine’s candy leftover from school downstairs in my back pack. “Well that might make my night a little less sucky” I thought.

It all happened so quickly. One minute I was getting up to get my box of candy hearts and the next minute I was face down on the floor of my brother’s room. I had attempted to get out of his bed, but what I soon found out is that when your legs don’t work, you don’t stand up, instead, you fall. I think that was when I realized my legs weren’t working… It took me a minute to process what had just happened since my mind was all over the place tonight. “Ant! Get mom. I can’t move my legs!” I yelled. “Seriously?” asked Ant. “No, I just love smelling the carpet in your room. YES. MOM!!!!!”


1997 : Pediatrician


Being carried into the doctor’s office at 7 years old is always an awkward experience. All of the other kids and mom’s look at you like you’re diseased. Yeah yeah, I know what they’re all thinking.. “Either she’s so sick she can’t walk or she’s just really lazy.”

Doctor Brooks, my doctor, wasn’t in today. I was going to see someone filling in for him… Doctor Fitzgerald or something like that. Doctor Fitzgerald was a man looking to be somewhere in his 30’s. He was tall and had sandy brown hair with no facial hair present. He smiled at me strangely and without saying a word examined me. “So what’s going on?” he finally asked. “I can’t move my legs” I said as I thought it was as obvious as daylight. “And why can’t you move your legs?” he asked. Doctor Fitzgerald.. Please explain to me how you became a doctor? Because you’re asking the dumbest questions I’ve heard all week. If I knew the answers to these questions, I sure as heck wouldn’t have come to see you, now would I? No, I never said that.. But I’m pretty sure my mom and I were both thinking something along the same lines.
That doctor’s visit ended in disaster. I went home with a prescription for over the counter Tylenol. WOW. Sounds like we’ve really got it figured out here. I even had a few x-rays done on my legs to make sure they weren’t broken. Sure enough, as everyone suspected, my legs were fine.

So what was my diagnosis you ask? Acid reflux again? Well, this time, I didn’t get one. I had a “Maybe you should come back when Dr. Brooks is back in office.”

1996 : Mom Has What?

“Wake up Megan, it’s time for school..” I hear my mom say.. Typical words of a typical day… But today’s words didn’t sound the same. Mom sounded run down. Exhausted. “Maybe she had a cold”, I thought to myself. But mom was tough, she could take it. Besides.. Mom NEVER gets sick, and when she does its never anything big.
I was ready to go downstairs and my favorite morning ritual was to hitch-hike a ride down the stairs like a monkey on moms back. I waited for her at the stairway and as she came out of her bedroom I jumped up waiting for her to give me the signal that she was ready to pick me up…. But she came and went and I got no piggy ride down the stairs… Maybe something really was wrong? “Why couldn’t I have a hitch-hike this morning mommy?” I asked sad and let down. “I don’t feel like myself today Megan, my body is sore and my joints hurt.. Maybe tomorrow. Sorry hunny”.

What the next morning brought was an even bigger surprise. I was still asleep when I heard my dad’s voice telling me to get up for school. What was my dad doing home from work? My dad was never home. He steps into the room and must’ve noticed the confusion as he said, “Mom’s not feeling well again today.. She’s going to see the doctor later, but for now, I’ll be taking you to school”. At this point I figured mom had actually come down with the flu, I had never seen mom so out of element.

As the weeks went by my brother and I continued seeing less and less of the mom that we knew. Her test results were to take a while to come back, but she told us that she thought she had Lyme Disease since she had a bulls eye rash a while back. Lyme Dih-what? Wait. Hold up. Mom thinks she has a disease? And what the heck is LYME disease? This was too weird of a reality to swallow, thinking that my mom would be any other than the one I knew, so I continued on as if she’d never mentioned those two words….. I had an amazing imagination but none too great to fool me for more than a week or two.. It was hard to get past the fact that she was now this completely different person, or so it seemed. She walked around so miserable and exhausted and looked like the walking dead. Her common complaints were joint aches, head aches, muscle aches, and just aches and pains everywhere. Fevers. Memory loss. Fatigue. You name it, she felt it. It was like an endless list of symptoms I thought I’d never understand.. Funny thing is, neither did her doctor.

The test results came back positive. She figured as much but her doctor was in shock. He’d hardly even ever heard of “Lyme Disease” and hadn’t the slightest clue of how to treat it.. But doing the best he could in studying into it, he read that within 3 weeks of antibiotics of doxycycline through a picc line IV would be a cure. YES! Mom was going to be back to herself within the month. Thank you LORD. Things were finally going to be back to normal.

1996 : Crist

Saturday mornings were no longer cartoon mornings in the family room. In fact, no mornings were cartoon mornings downstairs anymore. Every morning for those 3 weeks mom had to have a nurse come out to the house and hook her up to an IV. The nurses were always nice, though it seemed like it took a million years to pump a tiny bag of fluid into my mom’s veins. Ant and I were usually told to go outside or hangout in the playroom until she was done with her medicine for the morning, so that we wouldn’t interfere with anything. BORING. But that’s okay it was soon to be over with, right? The doctor said that mom would be COMPLETELY better at the end of these 3 weeks and that life would be back to the norm. Boy was he wrong……

3 weeks went by… 3 months went by…. Mom was still sick… except now that she’s exceeded her 3 weeks of treatments the doctor refused to treat her for Lyme Disease any longer. What the heck? Why was mom still sick? She was supposed to be better, but instead, the zombified mom that I’ve known for the past few months continued onward. It confused everyone. And not for my own selfish 6 year old needs, but I had stomach issues that, let’s just say needed lots of frequent attention. I was up crying through most of every night and every school day. Often times I was sent home from school being doubled over in ridiculous unexplainable pains. I had the “weirdest” case of acid reflux and IBS and ulcers and every other stomach problem under the planet. Now that’s one thing my mom and I had in common… Unexplainable, weird symptoms that didn’t make sense. Except the difference was, she knew what was causing hers. At the same time it was hard to see someone who was as strong as stone come crashing down into a pile of rubble. My mom HAD to get better. She HAD to.

It seems like just as quickly as mom became sick again she found some answers. She found the truth. They say sometimes the truth hurts but nobody said how badly. Mom’s 3 week disease turned into a disease with no cure. She caught up with a Lyme group in Nashville, TN who had all gone through the same or similar instances as my mom. They were finding doctors who followed Doctor Burrascano’s guidelines on how to treat Lyme Disease and even coming up with their own ideas through intensive research or study. Only a handful of doctors correctly knew how to treat this complicated disease and discovered that late Lyme or Chronic Lyme needed continued treatments. For how long? Sometimes forever. Forever was a scary word. To imagine MY MOM sick, forever? Noway. No how.

She was lucky to find a doctor within driving distance. Somewhere in the middle of bumblefuck nowhere Missouri. Doctor Charles Crist. Doctor Crist had become particularly interested in researching Lyme when his wife was diagnosed with it. There was no help for her, and without him furthering his studies, she could have died without proper treatment, just as the rest of those with Lyme.
Before I knew it, my grandparents were at our house for a visit and mom was on her way to Missouri. My brother and I always enjoyed time with them, and eagerly accepted staying under their care for a few days. The time that mom was gone flew by with them here.



With my parents return also came a mom with new faith. It was as if she was back to the same old mom I had known, even if she didn’t quite feel up to par. She was glowing, as if hope were lighting up her face. She was finally getting the help that she needed. There was a chance. There was hope.