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.

Watching.

Floating.

Nothingness

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.

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.”

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

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 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

I Can Indeed See You Staring At Me: A Primer of Staring

As my two friends and I stroll through the stores in the mall on a hot Summer day, one of them asks, "What if I stared at other people like there was something wrong with them?" You may need some more information in this situation, the three of us don't exactly look like a "normal" group of teenagers. My one friend is pushing me in my wheelchair that has my backpack which holds my tube feedings, IV nutrition, and drain bag. I have braces on my knees and a mask on my face. You could say I stand out a bit. You would think people would use their common sense and not look at me like i'm some robot-alien out of a sci-fi movie, but most people ignore their common sense and stare. The amount of people who stare at me on a daily basis used to bother me, and it still does sometimes, but now I ignore it, stare right back at them, or identify and organize them into categories for my entertainment. Now these stares I get aren't just the occasional "I think i’m being discreet and innocent glancing stare", it's often the "blatantly obvious, straight on, what is that??? stare." There are so many different types of stares used in different places and in different situations, so lets take a look at a few most common ones.

#1. The “I think i’m being discreet and innocent, glancing stare.”

Ah, one of the classics, you are all guilty of it. This stare occurs when an individual, let’s refer to them as A, spots another individual, B, who, for various reasons, stands out from society’s “normal” appearance. Person A, who tries to fulfil their curiosity in a way they believe is appropriate by slightly rotating their head by a few degrees at a time when they think person B is not looking, then moves their head slowly back to it’s original position when thought to be socially acceptable. This process is often repeated multiple times until person B has left person A’s range on vision. Here’s a little secret from somebody who is often person B in this situation: I can see you staring at me. When there are twenty people in a room all trying to perform the “I think i’m being discreet and innocent glancing stare,” chances are, more than one person will be looking at me at one time.

#2. The “blatantly obvious, straight on, what is that??? stare.”

The most common misconception about this stare is that it is mostly done by children. This stare is actually most commonly executed by grown men and women, who I am sure have acquired the proper social skills to know not to do this, but do it anyway. Stare #2 usually happens when person A swiftly detects diversity on their radar and quickly decides to ignore their instinct to be polite and perform this stare. Person A then rotates head, and sometimes even entire body, and fixes their point of origin on person B. Person A may continue the stare anywhere from 30 seconds to minutes. This stare can be the most irritating, and most amusing, for me anyway, stare of them all. I find it so ridiculous that people stare like this that I can’t help but want to go hand them a brochure titled, “Manners for the Common Idiot”, and strut away like Beyonce.

#3. The "oh my gosh I feel so bad for you stare."

Sighhhhhhhhhhh. Person A in this situation is often a teenage girl, couples with young children, or an elderly person, but usually a teenage girl. Accompanied by a look of pity, this stare happens when person A is overcome with emotion after seeing someone they believe needs to be pitied. Person A then proceeds to stare, maybe tilt their head slightly, and continue to feel bad for me until something new and maybe shiny catches their eye. Just thinking about this stare makes me want to puke.

          #4. The "what is that, whats wrong with them?!!??!?!? stare."

With a mix of curiosity and horror, person A in this situation stares without trying to hide their emotions. This stare is a more obvious one and may end with person A whispering to the people around them, causing a ripple effect of many types of stares. I really don't appreciate this stare, but I do enjoy watching people trying to figure out what is wrong with me, it is quite amusing.I get this stare the most when I'm at the beach and people are trying to figure out what the tubes coming out of me are, it's great.

   Now here's the deal, I know that human instinct drives us to new discoveries, and for many people passing me in Walmart or wherever I may be, I am their new discovery of the day. Staring is but a product of the curiosity found in discovery, but so is asking. I am not every person who has ever been gifted with the gaze of a thousand eyeballs, so I can't speak for everyone. But at least for me, if you find such deep-seated curiosity in my appearance that it feeds the raging fire of discovery in your soul, feel free to ask. I will often enjoy answering a few quick questions about the way I look and feel empowered in sharing knowledge with others, and if I don't feel like engaging, I'll shoot back with a short response that you can Google later. I would much rather that more people in this world were informed about the conditions that make me, and many others, look different than the typical person than have people stare and make assumptions.