Moon

11-11-14

Inspiration always comes with the most inconvenient timing.

12:26AM

I was never a night owl.

4 years ago you suddenly become a severe insomniac.

Modeling was never cut out for you anyway.. You don't like being told what to do.

rant over

I see you few and far between, but we still meet. You sneak up on me like a virus. You bring out my deepest thoughts, hopes, and fears. You're a narcissistic asshole. You're an artist. You're dark, bloodshot eyes. You're my dreaming when I'm awake. You're...

insomnianiania.......


Life lesson # I forgot where I was on the number scale. Now I have to start over.

When you have a chronic illness, no human is capable of truly understanding you. Not even those with like-terms. Your similarities are worlds apart.

You will likely weed through friends ... because everyone is so high maintenance and you feel like sunshines crap.

If you give a mouse a cookie, he'll make you do a bunch of other shit you don't want to waste your time on.

You will never have the capabilities seek out the companionships that most others have.

And if you're an introvert, just forget about it.

Sail to the moon.

Always tell the people you love. You may not have another chance.

The pigeon is a meanie britches who won't share his hotdog.

Don't ever jump out of a plane with a backpack full of bricks.

But don't forget, sail to the moon

fading



fading




fa---

Secluded

Friday
June 6, 2014

10:36PM

iced mocha swimming pools and caffeine baristas


24 years, 2 months, 24 days

or 12744994.2 minutes (and then some)

-is how long since I breathed my very first breath on this planet.

It really does look so much smaller in numbers.. and for some, it's just a blink. A short distance traveled with much more to be seen, only a fraction of a life and quite insignificant, yet, for others it is an eternity of a lifetime.

I cannot speak for my future self, but being as old as I've ever been I can say that I have learned more than most, and less than some in 24 years. Out of each struggling day to fit in and survive in this world, I observed what I had to and acted out as necessary.

This might be one of those (silently) acting out moments.

There are two types of people in this world:

A.The living
AKA the people who see how fragile and important every little thing is and never takes the gift of life for granted. Kickin' the bucket with their boots on, when the time comes, that is.



B.The dead
Better known as the Earth's asshole(s).. or the reason the words pessimistic, downbeat, hopeless, and defeat exists in the dictionary.



And really with so many individuals dwelling in the asshole of the earth, you will have to understand why I have mostly chosen a life of solitude with a few minor exceptions. Especially lately. I don't know whether to blame it on the generation, the previous generations, the technology driven society, my expanding perception of the world, all of the above, or realizing that I don't have enough fingers to point...?

Go ahead, look around you... what do you see? Gym rats boasting about their newest lift; people ranting about that show with that stuff; beauty products "improve the skin you're in"; overflowing boredom; and FIND A CURE because your disease is the most rare, the most important, the most abandoned, and only significant because it has affected you and you wouldn't have cared to read about it had it not.

Look again. You'll also see a child was born; that sunset was freakin' beautiful holy-flipping-cow; a lady rescuing puppies from under a broken house in the freezing cold; a smile; how great the crisp breeze smells after a summer thunderstorm and... it may take a bit of marijuana and a few loose screws but... how amazing God is.. and science.. and rainbows.. especially the double ones.

rambling statement about double rainbows

And I guess what I'm trying to say is,

I have stepped back a little bit recently and looked inside. I have been guilty of the top paragraph but I've also been worthy of the bottom one. I have distanced myself from people I do love, and still love, but only because it was distracting my focus off the pitter patters of my children's heartbeat and onto who fought with who and when--

And when one negative things leads to another, before you know it you've landed smackdabb in the middle of the... well, you know..

My body may be broken but my mind is quite beautiful. And as long as my desire to learn never dies and my appreciative nature is never lost, then I'm healthier and happier than any being could ever be.

Repeating History

1-27-14

10:56 AM

Red light. Foot tapping. Anxious.

10:57.5 AM

Sips coffee. Light turns green.

11:00 AM

Drives faster. World is spinning. Gulps coffee.

11:04 AM

Races through the door, coffee in one hand, purse in the other. I'm now late.. 6 year old to the right laughing with older sister, mother trying to quiet them down.

Friendly receptionist. She knows me now. Asks me how I'm doing. I refrain from telling her my throat is on fire from gulping my scalding beverage and smile sweetly instead.. After all, I'm the inconvenience.. I'm the one who's late.

She waves me by. I sit down. Foot tapping. Anxious.

Sip coffee.

Spill coffee.

"Oh shit..." Wipes it off and attempts to play it cool. Nothing happened.

Rustle my hand through some fitness magazines until realizing the 40 year old woman in front of me notices my clumsiness.

Refrain from magazine notion. Sip coffee. Stare at woman.

Look away.

awkward silence

"So Megan, when would you like to start back IV antibiotics?"

After a blur of small talk and what seemed to be only a moment later and I was being asked this question.

These words are like poison bouncing off the cochlea of my inner ear turning from noise into garbage in the Wernicke's area of my poor and pathetic unprepared brain.

I choke for a moment only to try to make sense of my situation.

Fuck all of you.

I'm sorry... I think I've misunderstood.... ha... You see, I thought you said antibiotics.... And, I'm certain we agreed after running around that mountain numerous times that this was not the answer for me anymore. Besides, I was passing out to the point of brain damage when I was on IV's last year. Not to mention I no longer have my port.

his pen taps quickly... he looks troubled and remembering suddenly...

"Ahhhhh.. yes... Well we'll have to manage with oral medications again I suppose. When's the last time you took Minocycline? We need something to break through the blood brain barrier. The symptoms you describe to me....... ever so classic of Lyme. Your brain needs this, and we've got to go after the infection before your stomach can start to feel any bit better."

But.... but.... but what about my one year antibiotic free anniversary?? what about that huh????? what about ME

A complicated patient is all they've ever called me.

He didn't seem stumped in the least this time. Quite calming in a time of terror for one's disheartening news.

YOU are a unique case, Megan. But you're not the only one with these symptoms, in fact, I see many people with cases just like this... and I'm confident that in time we can get you where you need to be.

as encouraging as that sounds I can't help but to kick myself.... I'm not exactly a fan of repeating history

12:08 PM

Mind racing. Car sick.

Conversations and short attention span.

Having to urinate after drinking too much coffee. Foot tapping. Eyes closing. Mentally exhausted, yet, strangely thankful.

Then laughing. Laughing at the comfort my old friend of knowing-what-side-effects-to-expect.

And the thought of this unicorn man listed below.

And to whoever reads these dumb things anyways..

You will now think of me whenever you see that image. MWAH HAA. I may forever be known as the "girl you knew with lyme disease" and no it's not LYMES DISEASE you imbeciles but I will also remind you of unicornmen. And I suppose that's good enough for me. for now......

influential AND gullible

12-13-13

12.13.2013

It's the end of the year, and like everyone else I've been pondering through the happenings of this last year.. What should have been squeezed into a time frame of (and would be more fair) at least 5 years all shoved into one.

This time last year I was losing hope and faith. My relationship(s) went to shit. My fading health had depleted me of who I was. I was depressed and scared constantly trying to cover myself up with lies and achievements like succeeding in school just to make everyone else around me think I had myself together.

One year ago I was told

Within the year..... I don't see you making it much longer, unless something changes.. And I'm sorry but I don't know where else to turn.

This time last year my medications were failing me. I couldn't hold nutrients. I was constantly sick with virus after virus because my immune system couldn't hold up. I had passed out from the medications so frequently that it permanently damaged my ability to multitask, my speech, and my vision.

Andy and I were separated. I even tried dating. I'm a relationship person-- so I go about acting as though I need to be in a relationship but really that was the furthest thing from my mind.. I was just doing what was "norm" for me. Because that's all I knew. Andy went through a deep depression and every time I denied him I hated myself even more, but I knew that we needed it. It was for the best.

A hop, skip, and a jump later and we slowly mended things.

I decided to give up on medications and give God a chance to guide me to the right treatment, if any at all.

In one month from today, it will be 1 whole year since I have been on any form of antibiotic for Lyme treatment.

1 year

Words cannot describe how it feels to say that. This is coming from someone who has been on antibiotics nonstop since 1999 (which was 4th grade for me, to be exact)

Though I frequently have Lyme pains... I'm still alive.


Something that-- A year ago, I was told would not be.

And this is OFF antibiotics too.

I started eating right.. Pushing myself to exercise even though it hurt (and BOY OH BOY did it hurt..)

One year ago today I had friends who were suddenly there for me. New friends and old, who, today- disappear from my life. It saddens me to see that my life spiraling downwards was merely entertainment for some.

But you have to be Your OWN happiness.

And with that, I have also gained friends, and even more respect for old friend, teachers, and classmates.

In this time frame. Of living, almost dying, moving, going to school, moving again;; I became an aunt to twin boys.

TWIN BOYS

Whom, I try to see as much as I possibly can. And it is a miracle to see our family grow. And how much even the tiniest of life can change someone forever.

But......

In this last year I was reminded once again how fragile life is. And to make sure you tell someone what you feel, because you may not have a chance to later on. Or to keep in better touch or acknowledge an old friend who is important to you.. because it might be the last thing you ever get to say to them. Because.... you don't know what really goes on in their head.

Because.... this last year we also lost a friend.

Where life is given, it is also taken away... Maybe not even taken, but chosen to end. And though it is sad we have to count our blessings. Learn from our mistakes and even the mistakes of others.

In the last year my kids went from toddlers and babies to preschoolers. I see their personalities unravel and it's exciting to see their individuality.

And lastly, from the girl who hates being alone I have learned to enjoy my own company. And just solitude in general.. peace and quiet can be comforting in doses, and I really wouldn't mind living back in the country one day. I'd like to take things slower. Besides, I don't need to be doing something all of the time.. because with that you never get the chance to truly appreciate something.


It has been awhile but what's the rush? This is my story afterall ;)

3/20/13

About 2 months ago I was told that my body was no longer able to handle intravenous treatments.

For that time period I had managed to give my body a break from treating the Lyme, focus on going as organic as possible, and try to get a few other infections under control on top of my hectic daily schedule.

4 days ago I started the Cowden Protocol.

http://www.nutramedix.ec/ns/lyme-protocol

(The site is for those of you…. ‘probably most of you’… who are unfamiliar with it)

To sum it up (because surely you’re too lazy to even skim through the site I provided you with, and quite frankly I don’t blame you) it’s basically a form of alternative treatment.. I have different infused supplements that come in little glass bottles with droppers attached. 30 minutes before breakfast, lunch, dinner, and bed, I’m given instructions of how many drops of whatever supplements to take.

The first few days were simple. Easy detoxing minerals and I wasn’t really feeling any different other than my usual headaches and brain fog.. to be expected I suppose..
But today…. Today is a horse of a different color. To be honest I’m feeling so messed up in the head that I can’t even gather the words to explain how I’m truly feeling. My mind is like a gazillion jigsaw puzzle pieces all from different puzzles and hopeless to ever even fit together HAHA.… and my legs. Oh Lordy. My freakin’ legs. Someone chop them off. NOW!!

It feels as though I’ve been running a marathon while pulling a bus.
Yeah.. my legs are pretty much rubbery sticks of jello at this point. They are making me absolutely miserable.

This, my friends, is a hopeful sign of a herx.. And I say hopeful in that herxing would mean that this treatment is at least curing my skepticism of this whole alternative method of treating me. What I’m worried about is not being able to handle treatment once again.. Then again, what use is worrying about something you have no control over? We’ll just have to wait and see.

I love how I feel like I’m having a conversation with myself while writing this…

Ohh… Lyme brain….



What’s actually been the real challenge lately is gathering the strength to suck up my emotions and be a MOM. And by mom I don’t mean kissing the boo-boo’s on the child’s knees when they fall on the gravel… I mean addressing the fact that my daughter, Autumn, has an Autism Spectrum Disorder… and seeking help for her. Unless you’ve been in these shoes, you cannot imagine the feeling in the pit of your stomach when all of your inside thoughts that maybe your child was “different” are being told to you by her preschool teacher out loud.

To hear that my daughter doesn’t enjoy playing with other children..

If I wouldn’t have suspected that my daughter was half genius, yet extremely socially awkward BEFORE the comment from her teachers..I probably would have immediately thought to blame the kids of her class.. But I walk in and see these kids each morning and each afternoon. They run up and hug Autumn every morning, welcoming her to the classroom, and wave goodbye to me as I leave. They tell her goodbye in the afternoon when I pick her up or try to help her clean up the toys she was playing with.

They smile and try to hold her hand, or fight over who can sit next to my Autumn.

These sweet little 2 and 3 year olds adore my daughter as I know she secretly adores them…. If she could only express it as they are able..

No. It’s not those kids. It’s MY kid.

It’s MY kid who is the reason why she plays alone and doesn’t join in on group activities. She can’t. She doesn’t know how.

My daughter…. The one who just stands there when we walk into her preschool in the morning… with the most frightened look on her face as she stares at her empty seat awaiting her around all of the other kids.. As she views the fact that she’s going to be forced to socialize. The best way I can describe the look is that of someone who is standing in front of a huge crowd and is about to give the biggest speech of their lives. I look into that face.. That expression… Every day I leave her there. And it kills me.

To see my sweet little girl break down and cry at home because she can’t understand her own feelings. Or is frustrated that I cannot relate to how she is feeling AT ALL. The world is ending. The world is crashing down. But wouldn’t yours crash down too if everyone just looked at you as though you were crazy when you’re the one who thinks they’re off their rockers?? Because that’s how she views US. Because her little brain is wired differently.

And not only her. But her father has this too. To know that she inherited this from him. I not only want to understand her, but I want to understand him as well. Two people that I love and care about confuse me more than anything I have dealt with. Even more so than Lyme Disease. I cannot relate to them and the way that they see the world, but I can only grow through the counseling and therapy that I’ll go through with Autumn to help me to be more UNDERSTANDING of it. I don’t have to “get why”… I just have to know that in her mind, or even his (her dad’s) mind for that matter, it makes sense. Even if it will never make sense to me.

And to see my son line things up perfectly across the room…. And for him to be over 14 months old and not speak… Sometimes it has me wondering if he is effected too…. Maybe he is.. Though, he seems far too sociable and his developmental milestones are more on track rather than being way behind in one thing and way advanced in another. Time will tell. We will see. As of now its just taking this one step at a time with Autumn. And in June, getting her retested for Lyme + Co Infections.

So for those of you who have wondered where I’ve been….

My answer to you is…. I’ve got my plate filed sky high and it looks like I’ll be busy for a while. But that’s what makes life so very interesting. ;)

2-12-13

Spending our lives discovering how to feel and I’ve forgotten what it means.

Wearing your white coats and grin of intelligence you’re bound to be confident to have all of the answers. One cough and they steadfastly turn to you for a cure. You nod and hand them a bottle of positive attitude which is all they ever needed.

Yet for me you are different. You look me over with uncertainty. A challenge.

Where’s my bottle filled with rays of sunshine and magical unicorn potions?

Each day passes through me like static on TV, unvarying. A glimpse of picture here and there, never figuring out the full story.

These bruises almost add character to my being. I’m becoming used to them as they are me. We’re meant to be as one. They’re my tattoo and I am their host.

I miss that gut wrenching feeling when someone socks you in the stomach. Or that feeling of fright when you are startled by something. Or maybe even the excitement you feel before an event you have been dying to attend. That breathlessness. I miss emotions in general.

I am mesmerized by your emotions. His happiness. Her sadness. Their playfulness. I study them like the books upon my desk. How do they do what they do? I cannot compute “feeling”.

01001110010101010100110101000010

NUMB

1-14-13


Life is too short. Life is too precious.


I WANT TO LIVE.

1.I want to know what it’s like to be loved for the person that I am. I have loved someone with all of my being never to feel that completely in return.

Love me for my perfections and flaws. To accept my past. To love my children for the amazing kids that they are, because loving them is part of loving me. To want to be there with me through my life challenges..

2.Go hiking under the stars. (and I mean a looong hike)

3.I want to have been able to help someone, somewhere learn about Lyme Disease and have it affect them for the better.

4.Have a paint fight with someone. Not a fight about paint…. But like a water gun fight, but with paint instead of water.

5.Get that tattoo I’ve been wanting for a while….

6.Take my kids to some pretty rockin’ concerts.

7.Make a Thanksgiving feast for a random homeless person/persons.

8.Chase a tornado

9.Visit the Middle East. Visit Europe. And get a picture and autograph in each place I visit with a random person.

10.Eat a sandwich on a sailboat without puking.

11.Stay in the Grand Hotel on Mackinac Island.

12.Take flying lessons.

13.Spend an entire day playing video games and eating junk food. ENTIRE DAY. (no breaks except potty breaks :P )

14.Leave a legendary geocache.

15.Dye my hair something bright.

16.Teach my kids another language (as well as learn one myself)

17.See the Dandy Warhols in concert.

18.Build a super awesome treehouse.

19.Dance in the pouring rain… in my socks.. (because for all of you who know me, you know how much I hate getting my socks wet) for at least 30 minutes.

20.Take a ride in a hot air balloon

21.Sky dive wearing a superwoman costume

22.Cliff jump. I’m terrified of heights.

23.Adopt a child. (one day…. A very long time from now)

24.Drink 10 venti sized coffee’s from starbucks and see what happens.

25.Learn to ski or snowboard. Then proceed to do so to the Waffle Cabin in the middle of the mountain in Killington, VT.

26.GET IN REMISSION.

27.I want to dress up as Wonder Woman. Walk into a bar. Find the drunkest fuck in the bar. And proceed to make a scene by pelting him/her with bullets from my nerf gun.




To be continued…..