Saturday, October 8, 2016

Rise and Fall- Dysautonomia Awareness Month

This one's for the fighters. For the Gatorade hoarding and the salt obsessed. For the IV saline loving and the compression wearing. For the supine superheros with a foggy brain.

This one's for the 70 million people around the world with Dysautonomia.

Rise and fall
I rise.
Feeling the calm before the storm.

A wave
Voices start to fade
A world of distance forms
The mighty drum begins to beat
While darkness becomes the frame
I'm heavy yet a feather
All feeling lessens
Intertwined in my thoughts,
Yet detached from physical feeling
My legs are no longer my own.
The black curtain begins to descend
Signaling an end and a beginning
A stranger in my own shell
A ghost waiting.

I fall.

Head down
Legs up the wall.

I breathe.

Darkness retreats
Feelings regained
Gravity tugs me into its embrace
Thoughts connect
Reality draws in

Legs down
Deep breath
I rest.
Becoming one again with the body I once knew
And then I will rise.

I will rise,
And again I'll fall.
In this never ending loop
But finding serenity in this storm,
I will rise again.

This poem is a small peek into the everyday life for many Dysautonomia patients. Syncope or presyncope (fainting or near fainting) episodes like the one depicted above are often only one tiny piece of the symptoms Dysautonomia patients constantly live with.

Dysautonomia is an umbrella term to describe the various forms of autonomic nervous system dysfunction. The Autonomic Nervous System, or ANS, controls all of the functions your body should perform and maintain automatically like temperature regulation, digestion, blood pressure, hormonal balances, and lung function, and a whole lot more.
All forms of Dysautonomia  are wildly underdiagnosed, misunderstood, and underfunded.
About 1 in 100 people in the world have some form of Dysautonomia, yet 60% of patients are told by medical professionals that they are faking or have a psychosomatic illness.
This is why we need to educate and advocate for change.

For information and resources on Dysautonomia from Dysautonomia International, click here.
To find out how to get involved and help raise awareness by click here.
For profile overlays, banners, and informational pictures to use on social media to #makenoiseforturquoise click here.

Saturday, July 9, 2016

The Hole In The Wall Gang Camp: The Most Magical Place on Earth

I belt show-tunes at the top of my lungs as we drive along a long, winding, wooded road. There is excitement in the air and joy in my heart, and I know I am about to have the best week of my life. I'm headed to a magical place where sadness is trumped by love and “no” is a word sparingly used.

I'm going to camp.

Now this camp is no ordinary summer camp, there is absolutely nothing ordinary about this camp.

The story of camp is not ordinary.
The staff is not ordinary.
The counselors are not ordinary.
The campers are not ordinary.
The magic at camp is not ordinary.

Every single person and aspect of The Hole In The Wall Gang Camp is extraordinary. Don't believe me, let me give you some backstory.

Hi, I'm Anna. And I'm a camper at The Hole In The Wall Gang Camp. I'm also a singer, ukulele player, artist, writer, and possibly the biggest Hamilton the American Musical fan you will ever meet. I'm also living with Ehlers Danlos Syndrome and many of its co-morbidities. The list of medicine, infusions, and various medical care I need on a daily basis is long enough to intimidate most experienced doctors and nurses. And for that reason, I can't attend any ordinary camp, and that's why I'm a part of THITWGC.

In 1996, Paul Newman, yes the world famous actor, race car driver, and all around incredible person, had a simple, yet transformative, idea. He envisioned a place where every child, no matter their medical conditions, could have the experience of going to camp. He wanted every child to be able to let loose, meet other kids like them, and raise a little hell. In 1998, after two years of hard work, imagination, and determination, camp was born. And the rest, is history.

Fast forward 18 years. It's June 17th, 2016, 10:05 AM. Our white van, filled to the brim with boxes of life sustaining equipment (and my ukulele, I can't forget my ukulele), makes a sharp left turn off of a long wooded road. The only thing marking this important turn is the carved wooden sign that is stretched between the trees. It reads: THE HOLE IN THE WALL GANG CAMP.
We pull in, crossing the dirt dam at the edge of the lake, and I know I am home.

Familiar faces greet us with lit smiles and wide eyes that hold more than words can accommodate. “We've got a camper.” And with the affirmative “Bring ‘em down” on the walkie talkie, we drive to admin.

More faces greet us at the administration building. Hugs and smiles and more hugs are followed by helping hands ready to carry my bags. There are three categories for where my bags need to go.
1. Goes to the cabin where I sleep. This is my blue duffel bag, one backpack, and a pillow.
2. The infirmary. This is three large cardboard insulated boxes filled with seven days worth of life sustaining IV bags. And one more gigantic cardboard box for all of my supplies and medications. (Aka the things taking up all the space in our van. But it's kinda vital to me being alive so I guess it's fine)
3. Stays with me. This third section contains two things. The bag I'm attached to that is currently keeping me alive. And my ukulele. Like a said, I can't forget my ukulele.

As we walk into the infirmary, the paint on the mural surrounding me depicts the magic that happens at camp. And the people around me, well, they are the magic.

We get settled and organize my things with my nurses. I'm in the red unit this year. As my mom and I go through each medicine and procedure I need to do while I'm at camp, I'm surrounded by more red trinkets and decorations than I've ever seen in my life. Well actually that's a lie, I got to look at equally as many green things in the green unit’s room last summer. But you get the point.

I meet with this summer’s dietitian. (Only the cool camps have dietitians, am I right?!) We go over my oral diet: If it can drain out of the tiny plastic tube in my stomach, I can eat it. If it can't? Nope. My diet this week (and every other week) consists of chocolate frosting, mashed potatoes drowned in gravy, water, hard candy, popsicles, chocolate milk, juice, and frozen Gatorade. Yum.

The wind blows in my hair as we ride away from the infirmary and to cabin circle in a golf cart. There is no need for wheelchairs at camp when we have golf carts that can seat a whole cabin of campers.
Blue, yellow, red, purple, green. Each unit is tucked into a nook of trees. They contain three cabins, each cabin with eight campers and five counselors. These cabins hold so much more than people, they hold friendship, they hold laughter, they hold tears, they hold the most precious memories of countless campers and counselors alike. And they hold the most important thing of all, the feeling of inclusiveness and love that you feel knowing you are surrounded by people who understand you.

Camp is the only place I know besides the hospital where you are surrounded by people who don't think it's weird to have the long protruding line up your neck where your central line is, or to have to take handfuls of meds multiple times a day. Need to eat through a tube in your stomach or your heart? No biggie. Because each and every camper knows that their life is a precious gift that has to be fought for. We all know that our lives can not be taken for granted, and that they often do not go the way you planned, but are amazing and beautiful.

Many of the counselors and staff know this to be true as well. Some of my favorite people at camp are the camper turned counselors, and this summer I got to meet the first camper turned nurse. Seeing people like you be a part of camp their whole life is a feeling you can only understand at camp. You see people like you thrive, and not just survive.

In the center of it all at camp, there is a flagpole that proudly flies the camp flag.

At the first night of each session, camp has a unit fire drill contest that ends with raising the camp flag. As it is raised, we sing one of my favorite camp songs that shows the understanding and connection each camper, counselor, and every single member of THITWGC has.

“This joy that I have, the world didn't give it to me.
This joy that I have, the world didn't give it to me.
This joy that I have, the world didn't give it to me. The world didn't give it, the world can't take it away.

This love that I have, the world didn't give it to me.
This love that I have, the world didn't give it to me.
This love that I have, the world didn't give it to me. The world didn't give it, the world can't take it away.

This camp that I have, the world didn't give it to me.
This camp that I have, the world didn't give it to me.
This camp that I have, the world didn't give it to me. The world didn't give it, the world can't take it away.”

Alina and I
(She's from Germany)

Mark and I
(He's an actor and Lin Manuel Miranda's former teacher!!!!!!)

My awesome counselor's and I at the boating and fishing pier.

Saturday, April 2, 2016

Symphony of Life

mnnm mnnm
mnnm mnnm
mnnm mnnm
Like clockwork.
Bold and prominent,
fast and steady.
The occasional
chimes in,
below the bellowing clockwork.
This symphony of noises is anything but a nuisance in my eyes.
These noises very well be coming from inside me.
These noises are the very essence of my physical existence.
These noises keep my heart beating.
These noises keep me alive.

When your body can’t sustain your life,
Because your insides are
And they don’t know how to keep you alive,
You need intervention to survive.
So my pumps do what my body can't.
Well they can do some of what my body can't.

My pumps can't
Keep my ribs from sliding out of place.
Keep my temperature regulated.
Keep my arms from twitching.
Keep my legs from going limp.
They can't do a lot of things.
Actually, they can't do most things.

But they can
Keep the blood from draining from my head.
Keep my weight at a healthy level.
Keep my blood pressure from dropping.
Keep my heart rate from skyrocketing.
Keep me able to stand without seeing black.
Keep me alive with breath in my lungs and blood coursing through my veins.
They can’t do everything.
But they do important things.

My pumps do more than maintain my physical life.
Allow me to dream.
Allow me to learn.
Allow me to serve.
Allow me to voice my opinion.
Allow me to stand up for what I believe in.
They give me the opportunity to

The noises in my bag are the noises of my life.
A life sustained on batteries and extension cords.
A life I don't take for granted.
It's a weird life,
I suppose.
But it's mine.
And It's pretty great life.
A spectacular one at that.

mnnm mnnm
mnnm mnnm
mnnm mnnm
mnnm mnnm
mnnm mnnm
mnnm mnnm

Saturday, September 26, 2015

Choose Life

I stare down at the DMV papers in front of me, and the little box that's responsible for giving second chances at life glares back. I want to check that little box with all my heart, but I know I can't.

My mom, dad, and I decided I should get a non drivers license ID card to have as a second form of identification besides my medical bracelet. I've been dreading this day for a while. Not because I'm afraid my picture won't turn out well or because I don't feel like going to the DMV. I've been dreading this day because today is the day that I have to say no to organ donation.

I have Ehlers Danlos Syndrome, a genetic, connective tissue disorder that affects how the collagen, which is the glue in my body, is made. This means all of my skin, organs, and various other parts are made of crappy collagen. Ehlers Danlos is responsible for the failing organs in my body, and would do the same is transplanted into someone else's. This is the reason I can't be an an organ donor.

Everyday, on average eighteen people die in the US alone waiting for an organ transplant. That's eighteen daughters and sons, mom's and dad's, coworkers and teachers. I don't find that acceptable. Eighty-four percent of Americans support organ donation, yet only thirty-four percent of Americans are registered organ donors. Checking of that little box on your DMV papers can save eight lives. That's eight second chances at life, eight beating hearts because you checked off that little box.

I've watched friends wait for years on the waiting list, waking up each day in hopes of getting the call that will give them a chance at life. I've watched them get the call and make it through surgery if they're lucky. I've watched them take their first steps out of the hospital after receiving the gift of life.

You don't need your organs after you die, but other people do. If you say no to organ donation, your organs that could save lives will turn to dust underground. So as I sit here writing this in the DMV, wishing that I could choose organ donation, I urge you, give a second chance and give the gift of life. Choose life. Choose organ donation.

Written in honor of Alex 

Heart and lung transplant recipient and musician

2/9/98- 2/12/15

Friday, August 7, 2015

Adventure Is Out There, And I'm Determined To Find It

I shift my feet as I inject the last syringe of medication into my bag of TPN. It’s ten o’clock at night, the end of an incredible day with my family; we drove halfway across the state to see one of my best friends, explored the campground where they keep their camper, and drained blue cotton candy out of my G-Tube. Now here I am, five hours away from home, setting up TPN on the bed of an RV. I’m nauseous from the faint smell of burgers and hot dogs, and  a teeny-tiny fluff ball of a dog is sleeping on top of my feet. How the heck did I get myself into this situation?

Earlier today we packed the car full of our bags that we needed to take on our annual adventure. Every year since 2009- for the exception of last year when the family road trip was my family driving out to see me on Easter in a hospital across the state- we pack up and head in a general direction. My family doesn’t believe in knowing exactly where we’re going to sleep or where we will go next. So we wing it. I've gone on road trips since I've had medical issues. For example, we traveled to Niagara Falls where I toured in my shiny, new wheelchair. But never to this extent. This year is the first year we’re road-tripping since I've needed extra baggage like TPN, tube feeds, and a million other things that make leaving home an endeavor in and of itself.
2009 trip ft. my shiny wheelchair
As I stare at the fully jammed car it hits me the amount of supplies it takes to keep me alive for just three nights. The contents of my supplies are as follows:
1 bag of assorted candy (duh)
1 wheelchair
1 sharps container
1 biohazard bag
1 huge backpack full of medical supplies that don’t need to be kept sterile-
     2 knee braces
     1 wrist brace
     3 ace bandages
     1 box of KT tape
     6 tube pads
     1 roll of PressNSeal
1 gigantic cardboard box containing-
     4 sets of IV tubing
     4 sterile syringes
     18 needles for injecting into TPN
     4 formula bags
     3 sterile caps
     8 saline syringes
     6 heparin syringes
     2 Sorbaview dressings
     1 dressing change kit
     1 cap change kit
     10 needles for my injections
      3 enteral extensions
      4 batteries
      1 Cadd pump charger
      1 Infinity enteral charger
      1 backup enteral pump and charger
      4 enteral syringes
      1 box of alcohol wipes
      4 Farell bags
      1 container of Clorox wipes
      8 boxes of formula
      1 roll of paper towels
1 huge tub of my medications
and last, but certainly not least,
1 red cooler that holds my life-source:
3 bags of TPN.
The cooler also holds 7 syringes of medications, and two vials of my injections.

All these supplies for three nights.

I now also realize that the car is made up of 95% medical supplies, and that I only have one bag that isn’t medical, and it’s full of clothes. Because of all this extra baggage we need to stay in a hotel that has a refrigerator, ice machine, table, adequate air conditioning  and the usual two beds and sofa bed for our needs. This requirements make our spontaneous adventure of a trip a little more tricky than the average family trip.
So why leave the house to drive somewhere I've never been, to try to find a hotel that fits my needs, to spend hours in a car that makes me feel sick, to go through all of this just to go on a road trip?
One word: adventure.

I don’t want to spend my days at home, pent up inside because leaving the house is hard to do.

I refuse to let my health hold me back from going out into the world and having a great, big adventure.

I want to feel the excitement of pulling out of the driveway on the beginning of a trip, knowing the best is yet to come.

I want to take chances, even if it means I may end up tired and grumpy and in a not ideal situation.

I want to feel the wind on my face as we cruise down the highway, with a feeling of uncertainty and adventure looming in the air, since I still don’t know quite where I’m headed.

I want to stop on the side of the highway to take pictures of the valley below.

I want to see new things, meet new people, visit new places.

I want to explore the world.
The Pennsylvania Grand Canyon

Getting to experience the world beyond the walls of my house and the hospital is worth the struggle of lugging my extra baggage around. The only thing that will ever hold me back from going on a trip would be my mindset. As long as I have my determination, my family, a cooler, all of my seemingly endless medical supplies, my dad’s excellent packing skills, and a little planning, anything is possible.
Selfies on the side of the highway

More highway shenanigans
"This is my cart now"

The site of the dam that caused the Johnstown flood

Walking into a great little Mennonite store that ended up having some great chips I could lick