New Years Resolutions

I am writing this tonight instead of tomorrow because I am not sure that I will have the time except for now.  I want to put out my resolutions for this year. I want to put them in print, so I can stare at the words and remind myself that these were important enough for me to decide for myself if I ever so choose to forget.  Here we go!!!

I AM GOING TO BE MORE SELFISH THIS YEAR-

What I mean by this is I am going to make time for ME. This ME time will include EXERCISE. I want to strengthen my muscles to try and stabilize my joints. I will no longer set unrealistic goals with my business ventures that force me to work 18 hour days so I can't take care of myself.

I WILL LEARN TO SAY NO-

Saying no will allow me to get away from setting all of these unrealistic goals. What I offer is what I offer and anything outside of that is NO.

I WILL TAKE TIME OUT TO APPRECIATE WHAT I HAVE-

I have been given a lot in my life and for years I had the attitude that I deserved it. Well, now I am going to stop and smell the flowers, look at what I have, appreciate it, love it and pay it forward.

TRY A MORE HOLISTIC APPROACH FOR MY EDS-

I want to explore more natural substances to take coupled with my exercise to hopefully get off some of the medicines I am on. I have already made an appointment for acupuncture next weekend and I am SO EXCITED to try it!!!!!  I will explore supplements in hopes of creating a more balanced mind, body and soul. Hopefully this will lower my freaking cholesterol!

I don't think that these are unrealistic!! I already quit the hard things which were smoking and drinking. If I can do that than I can do anything.

Here is my philosophy on EDS and this is how I perceive it for ME. I don't want anyone thinking that what I say goes for other people. Everyone has their stories, everyone has their limitations.  When I used to be healthy, strong and athletic, I felt much better about myself. If I work that hard to get that back, I think I will feel better in general. I will have a lot of hurdles to overcome along the way with pain and subluxations, I am no spring chicken anymore, but once I get there I wont need near the medications that I take. I HOPE!  Sitting on my ass whining about my knee pain isn't doing anything for me so now its time to try something new which is DOING SOMETHING ABOUT IT!!

I started tonight with my friend Dave. We joined the gym together and went for the first time. He is actually fit and motivated to go, which will motivate me. I jogged 2 miles and biked about 2. Then I sat in the most wonderful thing that has ever been invented on the planet called a sauna!!!! Oh what a wonderful piece of equipment that is!! I used to go in there with my grandma when I was little at the YMCA but to me then it was a hot room. Tonight it was like being wrapped up in a toasty warm burrito room, all cozy and nice. I have always liked oven hot things, like my car in the summer, a tanning bed, putting the space heater in my office on full blast and shutting the door. I have always wondered if that is just  a weird personal preference or if it was an EDS thing. I have read that some children with autism like heat and being wrapped up. I'm not autistic though.

Well anyway folks, I am logging out so I can watch recorded Millionaire Matchmaker to fall asleep to. I hope you all have a wonderful, pain free New Years. I will definitely keep everyone posted on my progress!!!

PEACE!

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

                        

The Beginning

I was always a bendy little girl, I never thought much of it. My brother used to find it amusing that he could bend my hand all the way back until it touched my arm and I didn't cry. Well, that's a lie. I didn't cry out of pain, only to get him in trouble.  I used to stand on the couch and jump off of it, landing a perfect ten on the carpet with my toes folded under my foot. Kind of like a toe dancer would stand, but only more ridiculous looking. I would run that way too. I remember my grandma always thought that was so weird. I also sat with my legs sprawled beside me so I looked like a big "W".

Here is an example of my toe walking. The feet behind me belong to my greyhound. The tattoo on my ankle I got when I was 17 so give me a break.

I was very athletic and really competitive, which isn't very common for kids with EDS. Most of them have trouble learning to walk and are extremely clumsy. Not me, I was a champ. I was always awarded the Presidential Physical Fitness award, did awesome at Jump Rope for Heart. (I wonder if they still do that?).  I could climb rope like a monkey; gym class was a breeze. Almost everything I did athletically I excelled at. I believe I was the 3rd fastest girl in my class. We had about 120 in my class so I think that's pretty damn good.

I went to the doctor a lot because I would convince parents that I broke something, but I never did. Sure felt like it and I would get X-rayed and nothing. I just always hyper-extended myself beyond normal human limits. I have only broke my tailbone and that's it.

I had some "growing pains" here and there but never anything that ever held me back.  My only childhood trauma came when I went to the dentist when I was 7 or 8 after doing a stint living with our mother in Newfoundland. Apparently she didn't find it that necessary to monitor my teeth brushing so I never did and ended up with 7 cavities. I know, I was a scurve. My grandma took me to the dentist and I am pretty sure it took 10 people to hold me down over 2 days of drilling. Everyone thought that I was crying and freaking out from the sound of the drill, not for the fact that I COULD FEEL EVERY BIT OF WHAT HE WAS DOING!!!!! Novocaine doesn't work on some EDS patients. Well, caines in general. Boy that was a shit ton of fun!

When I was in 8th grade it was decided that I needed braces. I don't think it was a hard decision considering my mouth was so crowded it looked like someone opened it up and threw 50 teeth in there and they all were fighting for a place to sit.  I had to have 4 adult molars removed so all my teeth would fit nicely. While going through the mouth numbing phase of the extractions, that's when my dentist learned that I was a difficult patient and needed to use something other than Novocaine on me. Then I went through 4 years of brace face hell. I only have 25 teeth in my mouth, soon to be 24. You wouldn't think that it would take that long for all of them to move. I have one wisdom tooth poking my brain that I need removed. Most people have 32 teeth. See? Small mouth. If you knew me you would NEVER think that though.

Anyway, back to my super awesome athleticism.  When I was in 8th grade, there was an announcement made that all boys who wanted to play soccer, there would be a meeting in the gym. I kind of thought that was a bunch of bullshit, and being the butthole that I can be sometimes, I went to the meeting with another girl friend of mine. I wanted to play too!! And guess what? I got my wish. I played varsity soccer. On the men's team. I was a forward and I had never played a day of soccer in my life. That's how awesome I am.

So, the whole season it was me, a bunch of dudes and a few girls, traveling the fine state of Iowa playing high school soccer. It was so much fun. I loved that summer. I had never been in better shape in my entire life. Then one day it all came crashing down on me. I was running on the soccer field, not a care in the world. I wasn't even NEAR the damn ball and all of a sudden I heard the loudest snap I have ever heard in my entire life. My coach was at the other side of the field and every single person stopped playing because they heard it too. I went down immediately, screaming in pain. I instantly felt sick to my stomach. I thought I broke my leg. Thoughts of me teasing another player earlier in the season came right to my head. He had broke his femur kicking the ball when someone else's leg got in the way. He was carried to the bench where he laid his head in my lap waiting for the ambulance to arrive. I told him that he could die if his femur was indeed broken from significant blood loss or a clot to the heart. Now it was me who was going to die.


Once we got to the ER the orthopod told me that I ripped the tendon sheath behind my ankle bone. It's worse than a bone break. There went my career in soccer. I was devastated.

So, I hobbled around that summer. I was supposed to take drivers ed but had to drop it because I couldn't walk a mile to the school to attend class, plus I couldn't drive with a cast on my leg. I only had a partial cast for a few weeks. When I walked after it was "healed", the tendon that sits behind the ankle bone then flopped back and forth over it. I became a weenie because that shit hurt! I didn't want it to happen again. So, I pretty much aborted my sports career.

We decided that October to have surgery on it to tie the tendon back down. The anesthesiologist that I had was a pretty cool dude. He suggested I have a spinal block so I could watch the surgery. This wasn't like day surgery, this was actual surgery. I'm all about stuff like that so I agreed. I remember laying on the table and them showing me the tendons in my ankle. It was pretty cool. I started freaking out though because as they were working on me, I could feel them leaning up against my legs. I still had sensation. So, they ended up knocking me out.

After everything in my ankle was put back in its original anatomical position, they buttoned me back up and sent me on my way. I lost all my friends that fall because I had the rankest, smelliest cast on the planet. Hell if I was my friend I would have packed up my toys and left too. It was bad. I was a sad, broken, smelly little girl.

I want everyone to know that the injury that I suffered is the same injury that Curt Schilling had happen to him and he then pitched in the World Series and won! That man is my hero. I cannot even fathom doing what he did and winning. He is either a true athlete or steroids are amazing drugs!!!

HYPER: EDS SUCKS

I wanted to be a lot of things when I grew up; meteorologist, makeup artist, flight nurse, mortician, dog trainer. I never anticipated that none of these would ever come to fruition and that I would grow up to be hyper.

When I say 'hyper", I don't mean it in the typical definition: : high-strung, excitable.. The word hyper applies to me in this way; above : beyond : super- a : excessively b : excessive.


I have a genetic condition called, Ehlers-Danlos Syndrome Type 3 Hypermobile. (EDS for short).

Now, I don't want anyone to think that my dreams of becoming everything that I wanted to be never happened because of what I have. That's not the case. I never became any of those things because I was a lazy asshole for a long time. EDS does cause low energy, but I am a responsible enough person to admit that although I have been affected significantly with low energy throughout my life, I won't blame that for not becoming a meteorologist. Ill blame my math skills for that one.

Don't get me wrong, I do have a great job in the transportation field and I also own my own photography business, so I grew out of my lazy asshole phase in my late twenties. Now I am anything but lazy, and I enjoy the fruits of my labor, but it does come at an expense and this is what this blog is going to be about. My battle with EDS, my journey in researching it and maybe meeting some cool folks along the way.

There isn't really any fantastic sites on the internet that I have found that has told me anything I don't already know. Its very frustrating. This is a disease that isn't widely known about. If you are interested in learning about it, you can visit this link:  Learn about EDS Here.

I am going to wrap this first blog up for now and I will start posting about what led to my EDS diagnoses and some major events that has severely impacted my life because of it. If anything, maybe I will be able to help someone else.