Dysautonomiac of the month

As many of you know I am a member of a group called DYNA kids it stands for Dysautonomia youth network of America. They have members from all over the world and most of them have the same type of heart condition as me. This month I was chosen as Dysautonomiac of the month. Meaning they send "my story" out to hundreds in their news letter and sometime soon will post it on the website under the link stories. I have posted part of the news letter they sent out below so that you guys could see it. I also thought I would take this opportunity to say thank you to all of you who help me get around and put me in your prayers. I am very grateful to all of you. (I am warning though it is a long story.)



DYNA FEATURED YOUTH MEMBER:
Charlie P.UtahJoined DYNA at age 19
Charlie’s Story
My name is Charlie. At the age of ten I passed out while climbing a tree. I fell twelve feet and broke my arm. While I was in the hospital getting my arm set the doctor noticed some abnormalities and sent me to the cardiologist. I was diagnosed with Atypical Neurocardiogenic Syncope. My symptoms at first were mild, and I continued living as actively as I could. I assumed that things would stay that way. I was active in theater productions, was on Student Council, and was a competitive fencer. I was on the first all women's fencing team in Utah and medaled.
The summer before my junior year of high school I got appendicitis and never fully recovered. All of a sudden I was unable to stand without fainting. I had extreme tremors, brain fog, headaches and fatigue. The school decided I was too much of a liability and put me on home/hospital tutoring. I didn't have the energy to do physical activities like fencing anymore. Since I was not in school, I rarely saw my friends anymore. I was able to concentrate my efforts on my schoolwork though. By the end of high school I not only obtained my diploma but also a certificate in Phlebotomy and Medical Assisting.
My parents have been wonderful. They've helped me study through brain fog, and they have taken me to countless doctors' appointments and have always been supportive. They have had to fight school systems to obtain fair accommodation for me. They joke with me when things are hardest, and they are constantly looking for ways to make my life as normal and easy as possible. Thanks to the support of my parents, siblings, and extended family members I am doing so many things that I didn't think were possible.
With some accommodations, I am living on my own and am attending Utah State University. I am currently able to take 9 credit hours. I fall (literally) all the time but I always get back up and keep going. I have a great roommate who on bad days has lain on the floor with me eating salty chips. She is willing to drive me places, and scoops me off the floor at stores and restaurants. It isn't easy to find friends that aren't embarrassed or scared by this and I feel lucky to have her.
During my first year of college on a particularly difficult day I stumbled across http://www.dynakids.org/. I had never really met someone else who had been affected by dysautonomia as severely as I had, and I instantly felt comforted by the mere fact that I was not alone. Being a member of DYNA has changed how I look at dysautonomia, has helped me become more educated about my condition, and has given me hope and reassurance in times of need.
Having NCS has turned out to be more complicated, expensive, and life altering then any of us thought it would be. Even though I have been sick for about 4 years now I still miss doing the things I used to do. However, with the bad - has come good. I’ve had the chance to experience the best in people as they offer to help me. I have learned how sweet it is to go on a walk, and I could never doubt that my family would do anything for me. I am blessed.
Learn More:http://www.dyakids.org/

Donations to DYNA can be made at: http://www.dynakids.org/ via the Justgive.org link. No amount is too small to make a difference

New Car!

Hey guess what I got a minivan. I would tell you the make, model, year, and all that but I can't remember any of it. I do know that it is red, has numerous cup holders and a CD player. Also I can use the wheelchair ramp with out having to use the wench which is the main reason I got it. I am going to miss saying "just a sec let me pull the wench out of the trunk" though. ;) Dominic and Dad came up today and had to switch everything over there were some crunched fingers and near cursing, but they made it work I got to practice going up and down the ramp I tried to ride the chair all the way into the car but nearly decapitated myself and have decided walking it up is going to be the best way to do it.


All I have to do now is name her/him. I can't think of any names that I like. I was hoping to get the help of all you creative people out there. Please feel free to post some suggestions.

Birthday "Potty"

I am posting an English paper I had to write not because it is particularly good but because It is a favorite memory of mine plus dad was able to find the perfect picture to go with it. I am sure most of you have heard the story before though.


“No one’s getting cake until they do it.” Mom taunted. The Guests grinned. This is exactly what they would expect from my mother. I found a pair of underwear I approved of and tried to protect the rest of my unmentionables from the frantically searching guests. I had settled on 100% cotton, with magenta and green stripes. Tasteful, not too granny panty, but not anything a guy might whistle at. I fit them onto my head like a bandanna. I then helped the youngest pull her ponytail through the leg holes in her underwear. My brother Dominic had forced his unfortunately sized chin through the leg of some plaid boxers. The other leg hung off the side of his head like a flag. My cousin Jobba had found a disgusting pair of whitey-tighties, and wore them like a French beret. Mom of course, pulled her pig-tales through the legs of a thong.
Shockingly fast our “potty hat” clad guests were ready and waiting by the front door.
“One time around the block yelling it is a birthday potty!” Mom declared. She opened the door and literally leapt down the sun-soaked driveway.
“It’s a Birthday Potty” echoed off the peaceful streets. Our bare feet smacked the sidewalk in unison as we jogged. Our laughter was probably as loud as our yelling. I couldn’t help but giggle, even though the laughing was starting to make my sides ache. As our troop passed a group of my schoolmates I tried to avoid their bulging eyes, and pumped my legs a bit faster. “Hey mom,” I said, “next year how about a nice piñata.”

I have a bone to pick with Anatomy class

I went to my first Anatomy Lab today. Talk about an experience. First off it is held in a room full of dead people which wouldn't bother me except that they use them as desks. Everyone’s books and the bones they were studying were all laid out on the nearest cadaver. My desk is a 51 year old named Bethany... Creepy right?
Next the amount of info they threw at us today was overwhelming. They point to small holes in the skull and say. What is this holes name? I don't know it looks exactly like all the other holes! We passed around skulls and ribs and vertebrae which were way cool but they have a million different parts with the weirdest names that we are required to know how to spell.
Oh and the cherry on top of this sundae is that to get up to the cadaver lab in the wheelchair or with the walker I have to ride in the cadaver elevator. It is the only elevator they have. It is the most foreboding elevator ever with a HUGE sign in it that says “No passengers Freight Only” The door doesn't even open automatically and is so heavy I had to get help to open it.
If anything this is going to be an interesting semester.