Ehlers-Danlos Sucks

This is a sub-blog about a girl dealing with Ehlers-Danlos Type 3. I hope to help others while helping myself, my family and my best friend in talking about and gathering all the information that I can about this jerk of a disease.

I have another blog: http://ihatebrainaneurysms.blogspot.com that I started in 2008. My dad was diagnosed with a super huge brain aneurysm which he fought for almost 2 years. He won the battle of the aneurysm, but died due to complications of his treatment following the aneurysm removal. It is his story, in my perspective.

I believe that he had undiagnosed EDS and this caused his aneurysm. I want to be heard and I want the medical community to take notice and to understand that this disease isn't black and white. There are a ton of gray areas. Just because we don't look sick or necessarily feel sick doesn't mean we aren't!!

I hope to keep you interested, I want to hear your stories and I also hope to make you laugh.

Welcome to my blog!!

Wednesday, February 23, 2011

In Memory of Jim Shoning

Ever since dad passed away, I have been trying to think of something I could do to keep his memory alive through a charitable organization.  I wanted to raise money somehow and donate it to families of patients who are sick.  I know how hard it is to have a family member who is sick and the financial burdens it causes.

Trying to come up with an idea is hard, especially when you dream big like I do. The problem with dreaming big is usually there is huge overhead and time which I am not prepared for. I saw a Man vs. Food where there was a food marathon that raised money for charity. It was pretty neat and I think it would be something dad would have liked. They got I think 3 restaurants placed about town and each team had 3 people. It's been awhile since I have seen the episode and I am probably remembering parts of it wrong, but it basically had the first person eat a pile of whatever it was, then run to the next restaurant where the person then tagged another to eat food there. Then they rode their bike to the next place where they tagged the next person who I think ran, because I don't recall there being water...but at the end they all three had to run across the finish line. I think that would go over very well, but I would have to find sponsors and spend lots of cash and it would be a full time job. I can't do that.


Then I thought of a walk, but everyone does a walk. Same with bike rides.  Half the people I know don't walk OR bike ride. So, no one would show up!  So, I just kind of kept it in the back of my head this whole time until this weekend. Coleman came into my office after cleaning out his Jeep and had a ramp ticket to Rush Hospital and this:

 


A TEN DOLLAR GIFT CARD WE GOT FROM THE EMPLOYEES AT RML!!!  BINGO!!!  RML was where dad was in Hinsdale, IL that was the ventilator facility before we went to Oelwein. I specifically remember how awesomely thoughtful that was when we were given that. It was only ten dollars but I tell you what! After driving back and forth from Des Moines to Iowa City, then Iowa City to Chicago, then to Oelwein all the while paying for hotels the entire time and eating out for over a year, my savings account went bye bye.  But, I don't care, I would do it all again in a heart beat. Which leads me to believe that there are other families out there who are doing the exact same thing that we did for their loved ones. So, I want to pay if forward what was given to us and give it to others who need it.


I WANT TO START A GAS CARD CHARITY!!!!!!


This is TOTALLY appropriate too because between my dad and my grandma, I can't even begin to think of all the tanks of gas I scored out of those two. Hell, for about 3 years of my life, my grandma gave me an Amoco card which I bought all my gas with, (And maybe a cigarette or two, LOL) Plus, its GAS, and well, Shonings and gas go hand in hand. Coleman once said he thought our family crest was a toilet.


I have been trying to think of names and its been hard. I keep wanting to play with words and be clever with the whole "gas" thing. Like, You Have Been Gassed. Or, We Just Gave You Gas.  A gal I work with said we should call it "Jim's Journey" and then call the gas cards, "travel tokens."  I like that, but I don't like "Jim's Journey."  To me it makes it sound like he is still alive and on a journey. So, I would like to implement his name somehow and I am just drawing a blank, so suggestions are WELCOME!!!


I am going to donate some proceeds from my photography business to this and I plan on putting the names of the people who donate on these cards as well as a "made possible by."  Unless they don't want me to of course. I would love to be able to donate these to Methodist and University of Iowa, and as much as it pains me to say, Mercy. Im not a Mercy fan and thats no secret, however, those are our top 3 trauma hospitals in the state and thats where people get flown to when something happens. So, this creates a drive issue for people.


I can't even BEGIN to tell you how hard it is to have to stay out of town with your loved one and miss work and deplete your bank account. Every little bit helps and I hope to make a difference in some people's lives. If anyone wants to donate money or a gas card, hit me up and we will make it happen!! I am SO excited for this!!!!


I will keep everyone updated on my progress as this comes to fruition. YAY!!!!!  Remember, throw me some suggestions!!

Saturday, February 19, 2011

Wow!! I Sooo Did What I Said I Wouldnt!!

I am such a jerk! I said I would't be one of those people who start a blog and then ignore it and I did!!! I feel so bad, but I do have a million excuses:

1. Im still dealing with a dog that has a broken leg.
2. She also has allergies and it's a fulltime job to keep her from licking, scratching and trying to not let her eat her cast.
3. I work a fulltime job.
4. I work another fulltime job!
5. Im planning a wedding.
6. Im reinventing my 2nd fulltime job since Im the owner.
7. Im trying to pay attention to my awesome fiance.
8. All my good tv shows have started back up.
9. Im sleeping.
10. I get tired of staring at the computer all day.

There! Those are 10 reasons as to why Im not on here. Its currently 2:13 AM, I cant sleep and here is a run down of my day tomorrow.

1. Early morning laundry
2. Test drive a new vehicle
3. Pick up nephew, go by bday presents.
4. Go to a 4 year olds party
5. Take nephew back home
6. Go shoot a wedding
7. Go to a dinner
8. Attend another wedding party
9. Go home and crash!

My ankle is better now, I gained some weight because of my injury so today I started the 17 Day Diet that Dr Phil raves about. My fiance started it too. I think I have broken the world record for pissing today since I think I have drunk enough water today to fill a childrens pool.

The weather is warming up here in old Iowa so I plan on getting my bike out. I am an avid bike rider. This last year was ruined because of the flooding. My trails were all under water and I dont like riding in the street by myself. I need to get back on my Twitter too. I wish there were more hours in the day!!!

Anyhoo, Im tired so Im going to turn in. I promise to pay more attention to you, Mr. Blog. Nighty night.