Racing Days and Kibble Nights

I would love to know what place I got for the marathon I must have ran in my sleep last night. I had a relentless pulled muscle in my inner left thigh that gave me an embarrassing limp at work today. My whole body ached all over. I mean I hurt before I went to bed but isn't sleep supposed to help and not hurt? Not happening with EDS.

My home life didn't get any better when I went to feed the dogs. I filled the puppy feeder and walking back to put it in its place it spilled everywhere. I guess my left wrist couldn't handle the pressure of my right hand putting the lid on it because it gave out on me. Please comment and give me reassurance that a two year old can handle a little kibble in their diet. :(

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Ehlers Danlos Family Contributions

It is time. 

One blog featuring families in need who have Ehlers Danlos Syndrome has been created. The mission of the blog is to provide one stop to find a way to donate to the various nonprofit centers for research to find a cure as well as individual families who need help.

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"1. Lack of information from doctors world wide. People with Ehlers Danlos Syndrome usually travel many miles to seek treatment due to scarce familiarity with the condition.


2. Systemic problems occur. Very few people or none with Ehlers Danlos Syndrome have no other medical problems diagnosed. The other diagnosis' are often but not always secondary diagnosis to the Ehlers Danlos Syndrome.



3. Often people with Ehlers Danlos Syndrome are minimized. They are told the problems, being so many, are all in their head. Many have been diagnosed with psychiatric disorders that do not fit them.



4. People with the Vascular type of Ehlers Danlos Syndrome have a lower life expectancy. People with any type are at risk for life threatening complications."

The hope is that for every $20.00 donated to the cure research that $1.00 is donated to one of the families currently struggling with this debilitating systemic congenital condition to aid them to a better quality of life. Such families are found along the right side of the blog.

This community really needs your help!

Click here to view: EDSFC

The Doctor Turned Me Away

My doctor tells me that I have both a bleeding disorder and a clotting disorder. I am so confused! Apparently, so is he. It's like taking a Toyota to a Ford clinic to be worked on he said.

Due to the lack of experience with my condition by doctors in my area, I am waiting on details of where I will be sent. I was diagnosed with a bleeding disorder and a clotting disorder. I will be sent out of state in search of a care team. Ohio Children's Hospital or Mayo is looking likely pending resources for overnight stay, travel expenses, daycare for children at home while I am away, and any possible insurance involvement in my needs for specialty care. We remain hopeful I will get treatment of any kind soon. The upright MRI in Carmel would be so helpful in determining treatment. Your support means so much!!!

                                     Trying to remain strong for my babies everyday.

More than the Beighton Scale/Score

Other signs of connective tissue disorder and hypermobility include the following:

Metenier's sign

Reverse-Namaskar

There are many more signs. EDSers will do this stuff as kids as "party tricks" and yes we realize nobody else seems to 

be able to do it but we dont necessarily see ourselves as different. Gym class shows many people doing things that 

others can not for instance. We were born this way and have to be told that it is different within the population norms.

Cervical Instability

Hello everyone! I hope you are enjoying the blog. All I could think about lately was the pain that goes on everyday but Im not going to get on here everyday and whine about that causing my blogs not to want to be read anymore. Instead I slap on a smile (call me fake idc) and continue onward.

Today I want to talk briefly about cervical instability. Many with EDS complain about neck and back pain daily. It can get really bad too. I would love to put my head down about every hour for a good 15 minutes all day long. Of course I cant do that but when I get the chance it does help me get through the day. You will find me trying to hold my head up with my wrists very often. Yes it does make things worse for the wrists!! Today I am thankful of my pain scale not being a 10. Woohoo! Tomorrow is Halloween and I plan to take my kids out so I imagine I will be worthless November 1st hahaha! (I laugh but it's not funny. Not really) But that's ok I will pretend I am fine and try to get myself to believe it. Its hard to understand how that does seem to help, although very little, it does. A positive attitude will get me as far as I can go in life. I choose to stay positive for myself and my family! So slap that smile on and fake a good day if you have to. If I believe there will be more Ehlers Danlos Syndrome awareness in our future than it will come true? The power of attraction wins!!