wwwwwwEEEEElllllppp,
I am pretty sick and cannot type much at all.
I just wanted to remind everyone of the Benefit Concert being help for my family and I. It is on Monday, November 14th, at Studio 600. It is from 7 pm - 11 pm. There will be four really popular local bands, as well as raffles/silent auctions. It will be awesome, and I would love for everyone to go and show support!
Also, we are still trying to get the ball on the roll for the Ohio appointment, even though i know travel is impossible. . .But, hopefully we can get in sooner than 6 months, because I need help, and I need it now. I am just slowly getting worse, and just not really progressing, and Quality of life can't get any worse then where I am at. But, I know everything happens for a reason, and it might be a while until I know all of the reasons why the lord made me suffer with these diseases. I know there is a special reason, and I have been able to meet a few people, and help them. I always joke around, that, EVERYONE BETTER BE LEARNING FROM MY ILLNESS, SO THAT NONE OF YOU HAVE TO DEAL WITH THIS LIKE I DO. Learn from my situation, so that YOU don't have to go through this. Although, everyone has their trials, this is my trial, and BOY IS IT TRYING MY PATIENCE ;)
Fun fact: Who knew washing your hair was such a chore/job. I no longer can do it, so my mom gets to wash it in a Grandma blow up thing that lays on the floor so that i can wash my hair. But, it's been 2 weeks since my last hair wash, and its time for another one, i just dread doing anything because it kills me.
Also, I am in need of a cute name for my feeding tube. I can't decide. . .
I also have a new found love, its called GREYS ANATOMY. If you do not watch this show, you are honestly stupid. It is amazing. Good thing i am only on episode 20 . . .I have at least 180 episodes to go to even catch up to its current season.
Also, Hershey, our puppy, well technically i want him to be all mine, is doing awesome. He is so cute. We are all adjusting, and he is definitely not going anywhere.
Also, I decided when i get better, I am trying out to be a Dallas Cowboy Cheerleader. DON"T LAUGH. I am overly excited to try out, when I can do a better trick then rolling over in bed ;) HEH HEH!
Last, but not least, School is a fail. I just cannot find motivation to do it and cannot do anything more than 5 minutes at a time because of pain. I don't know if I will finish by may. . . .but, I am trying. Try being sick and having to take a full time school schedule. . .Yeah, i am stilll at the beginning of the year in some of my classes. Woops. . ..
Well, go to my benefit. It will be good. Enjoy it for me since I can't go!
Alsoooo (This is my last also, i promise), YOU CAN BUY T-SHIRTS AT THE BENEFIT CONCERT.
So, if you didn't get one at school, go order a t-shirt, and help me create awareness for this horrible disease.
You can also text me, 81-592-3907 , and get a shirt through my family or I.
Have fun
Okay,
I am OFF TO WATCH SOME SISTER WIVES (Another show im obsessed with)
Oh, I so hope you get that appointment. No one's judging you --stop worrying about that! Go be a cheerleader and anything else you want to be. I bet being stuck in bed has made something like that --dancing and jumping around and stuff look really appealing.
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ReplyDeleteHaley- My neighbor's daughter struggles with this medical condition as well. One night while I was working at the hospital I came across this article. It is not a "cure" for everyone, but it might be a starting point or some things to consider or look into. Medical advances are amazing! Thank goodness for modern medicine! Even thought it is not perfect and we do not have the cure or answers for everything, we are getting better day by day!!! I hope this article gives you some good information. Good luck with everything. "Come what may and Love It!"
ReplyDeletehttp://www.medscape.com/viewarticle/460632_4
November 15, 2011
ReplyDeleteHaley,
My name is Erin McLaughlin-Tutton. I saw a piece of news covering your story. I have gastroparesis, too. And have been struggling with it for 12 years. Mine began much like yours, I woke up Monday morning with the flu. I know the exact date, December 6, 1999, because I had a basketball tournament that weekend and was too sick to play. I was 17, a junior at East High School in Salt Lake City. Like you I was an athlete, playing volleyball, basketball, and softball. I had many friends, went to dances, games, out with friends every weekend. I had a full ride scholarship to the University of Utah, I wanted to go out of state, but because I was still sick senior year, I decided to stay close. Just until we figured this out and how to get rid of it. My little flu only worsened. I was nauseated and vomiting , my stomach hurt, the hurt that makes you want to scrunch up into a ball. I could not shake it, and began bouncing from doctor to doctor, enduring test after test: each one more unpleasant and invasive than the last.
When doctors could not diagnose a clear disease, they flipped and began blaming me. I was depressed, anxious, anorexic, bulimic, hated my body, hated school. I wracked my brain trying to find anything in my life that could possibly make me mentally ill. Finally, after a year and a half, my new doctor listened and immediately scheduled a gastric emptying test. Did you have that? Consisting of eating scrambled eggs and orange juice laced with radioactive particles and then traced down the digestive tract timing and observing motility. My time was shockingly slow. It was bitter sweet, vindication but no clear cure.
Into my second year, I began to rely on feeding tubes (some like the one in your pictures) as well as nasal j tubes; j/g tubes; and now peg/j directly into my intestines –as low as possible because the first section of my intestines are also affected. Do you have pic lines or central lines? I have specks of scars dotting my arm from pics and several bumps across my chest as well. I use it for TPN if I am really sick, and hydration, vitamins and some medications. I also crush meds and push them through the jpeg. I noticed in your pictures that you have a kangaroo joey pump- I am using that right now!
Anyway, I have lots of stories and would love to get together and hear all of yours. I could even come to your house if you are too sick to go out, which I totally understand. You seem to have a great support system, that is super important. I admire your strength and thank you for sharing your story. Keep hoping and laughing and living to your fullest. Some days will be hard, some will be better- cherish those days. Contact me if you want: erinelisamct@gmail.com or emclaugh@mymail.slcc.edu