CaringBridge.org

Hello everyone and welcome to my page! My name is Juli and I am 19 years old. I am proud to announce that as of June 4, 2005 I am officially a GRADUATE of the Electronic Classroom of Tomorrow! I am currently attending the Youngstown State University on a full academic scholarship - I proudly still hold a 4.0 GPA! My declared major is Respiratory Care. Ha ha - so far I’ve started out as an Education major, then switched from Pre-medicine to Nursing, and now I'm going into Respiratory Care. Well, they say that usually you change your major 3-4 times before you graduate, right?

I have a chronic illness called Dysautonomia, which affects my autonomic nervous system. More specifically I was diagnosed with Delayed Postural Orthostatic Tachycardia Syndrome associated with Diastolic Hypotension, Neurocardiogenic Convulsive Syncope, and Chronic Fatigue Syndrome in November 2003 - although I have been battling these disorders for a good portion of my life.

I was also diagnosed with Reflex Sympathetic Dystrophy Syndrome (also known as Complex Regional Pain Syndrome) in July 2001 after a severe soccer injury. Luckily, my doctor caught it early and I immediately underwent intense heat treatments and physical therapy. My body responded beautifully and I went into remission. I've had 3 relapses since then, but I've been in remission for almost 1 year now!

Most recently I’ve been having some GI issues. I was hospitalized from February 10 - February 13, 2006 after vomiting blood during a seizure (see journal history for more details). It is suspected that my medications are tearing up the lining of my stomach, thus the bleeding. This presents a problem because I need to take my meds in order to be able to function. I am currently undergoing testing to figure out what the problem is. Hopefully this is nothing serious and it can be easily fixed!

I've also been passing out and the frequency of my seizures have increased. I saw Dr. Grubb for my 6 month check-up on April 20, 2006 and he decided it was time to implant a REVEAL Plus Insertable Loop Recorder (see April 21st journal entry for details). This will hopefully tell us whether or not I'm going into asytole when I pass out and ultimately determine if I'm going to need a pacemaker.

On May 12, 2006 I had my REVEAL implant placed at the Medical University of Ohio. The procedure went well, with few complications, and I recovered nicely. Of course my blood pressure is always an issue in the recovery room, but that was to be expected. Dr. Grubb is now just waiting to see what it shows so he can decide on his next move...

In July 2007, while being worked up for my GI issues, I was discovered to have a severed primary lactose intolerance. I was placed on a lactose free diet, which was difficult to get used to at first, but has really helped alleviete my symptoms.

This page was created to keep my family and friends updated on how I'm doing. I will try my best to keep y'all updated with by posting as often as I can. Feel free to browse and check out my links. Oh, and PLEASE sign my guestbook if you stop by. I always like getting up in the morning and finding that people have visited my page. If you have a CB page or any other webpage, include it in my guestbook when you sign so I can come visit you! :) As always, thanks for stopping by!

*You are listening to/watching a music video of "Somewhere Over the Rainbow (What a Wonderful World)" by Israel Kamakawiwo'ole. I absolutely love this song!! If you get tired of it, you can pause it.*

...which means...

The ANS is a very involved and complicated system. It regulates all of the unconscious functions of our bodies; our cardiovascular system, gastrointestinal system, and urinary system are just a few. It also regulates body temperature, metabolic processes, and the endocrine system along with many other functions. Orthostatic intolerance is a hallmark of multiple forms of dysautonomia.

Symptoms include:
Tachycardia, bradycardia, palpations, chest pain, dangerously low blood pressure, wide swings/sudden drops in blood pressure, excessive fatigue, exercise intolerance, dizziness, fainting/near fainting, gastrointestinal problems, nausea, insomnia, shortness of breath, tremulousness, frequent urination, seizures, cognitive impairment, visual blurring or tunneling, and migraines.

This child is walking for Dysautonomia awareness. Right click on the image and scroll down to "save picture as". Save this and upload to your own website to help spread Dysautonomia awareness. We NEED to make people aware of this debilitating condition that is affecting youth all around the world!

You know you have Dysautonomia when...

Your parents tell you to drink before you drive.

You are commonly mistaken for Casper the Ghost.

You carry salt packets in your purse.

You hear a truck backing up and think it's your pump beeping.

You have tried every flavor of Gatorade.

You tell people that you have autonomic failure and they recommend a good transmission repairman.

Physics is your least favorite subject because you hate gravity.

Your doctors send you Christmas and Birthday cards.

You make Jell-O shots with Pedialyte.

On a date, your heart races even if the other person is ugly.

The IV team says they like a challenge…until they meet you.

You are very patriotic and can turn various shades of red, white and blue.

You can read your own echo's and EKG’s.

Your latest embroidery project is a wall hanging proclaiming "God Bless Zofran".

Medical students ask to borrow your notes.

You use your insurance card more than your visa card.

You are blood doping and taking speed or narcotics...legally.

You've been home from the hospital for two weeks and are still measuring your pee.

You're thankful for steroids because finally there won't be leftovers after Thanksgiving.

You tell people you have POTS, and they say, "let's light one up and party!"

"Pain is temporary, quitting is forever"
-Lance Armstrong

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Journal

Tuesday, December 4, 2007 1:14 AM EST

Quick update while I'm taking a break from working on my paper (it's the 4th one since my last update!)...I had a photo shoot back in October to help out a friend of mine who is a senior photography major. I was part of a project she was doing and now a few of the pictures she took of my are hanging in the McDonough Museum on the YSU campus. Cool, huh? Well I got permission from her to share a few of the pics from the photo shoot. Just wanted to post them here. Enjoy!

Read Journal History

Sign and View Guestbook

View Photos

Hospital Information:

Patient Room: Home Sweet Home!

Links:

National Dysautonomia Research Foudation   http://www.ndrf.org/
Dysautonomia Educational Information Center   http://dysautonomia-eduinfo.org/
Julianna Banana's Monster Links Page!   http://members.shaw.ca/bananabin/links.htm