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, December 29, 2010

When I Was Accused of Being Loose in High School, Who Knew it Was True!

I'm just teasing, I was never "that girl." I was this girl --->

For real, that was me. I was in there. I was the Carlisle Wildcat!!! You would think that job would be awesome but it wasn't. That thing was made in the 70's and smelled like 23 years of high school sweat. It was hot, the head was the size of a small car and little kids liked to punch me. I couldn't turn around quick enough to catch them due to my head size. Also, the top had a hole where a breathing screen once was, so another fun game for the elementary munchkins was to throw quarters in there. At least I made some money.

Here is an actual picture of me in high school circa 1993ish. 

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 *Sigh* I had the best hair. I am much more attractive in this picture. Let me go back a little farther down the old memory lane to 5th grade where I met my best friend, Amy Sue Roberts. Now known as Amy Sharp, or @Sharphounds on Twitter.
HAHAHA!!! We were SO HOT!!! I have the best mullet and I have no idea what Amy is doing.  Well at any rate, we met and have been best friends ever since.

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I was diagnosed with EDS about 1997. I had a TON of lower back pain, ankle swelling and then I lost 30 pounds in about 30 days from stomach problems. I had every test under the sun done. Finally a rheumatologist diagnosed me. I didn't really know what it was. I was told I had IBS as well and I was put in a clinical trial of a new medicine which I took. I had to call in every night and tell them what my poop looked like. Then my brother's friend who is a pharmacist told me to stop taking it because it was causing ulcerative colitis and killing people. So, I stopped, but my diarrhea never did.

I was working in Des Moines busiest hospital's ER at the time. Standing was really wreaking havoc on my lower back. I would go home and cry. Plus my ankles swelled up. Amy had left me and gone into the Army. She was in Korea feeding all her GI Joes and I was here treating UTI's and homeless people.  Amy was always hurting herself as well. We used to want to call attention to ourselves and would actually try and break each others limbs. We weren't all that bright. I was so pissed at her because after spending a few hours at my house one day jumping off the couch trying to break our legs, she goes home, walks in her door, slips on the rug and breaks her arm. I was so jealous.

Amy popped out a couple kids and started having some joint problems. She was diagnosed with EDS a couple years after me. Isn't that such an awesome coincidence?  I didn't really know anything about what I had, only that I had it and I had pain and rot gut from it. Then she calls me up out of the blue and tells me she was just diagnosed with Ehlers-Danlos. I was like, that's what I have!!!!

We truly are best friends. Its nice to have someone to bitch to. Here is what Amy looks like today.


Amy and her dad. He just can't let her go.

Me and Amy
                                                                                Me


                        

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