Monday, June 21, 2010

OtHeR eLheRs DaNLoS PeRspEcTiVes...

So since I am still here... waiting for the date of my RFL  I am just taking the opportunity to get to know more about what I am going through.  I really do not have anyone in my family that has ever gotten this bad.  I am sure others in my family have this.  Positive actually.  Their bodies have not been subjected to the same trauma that mine has been subjected to.

I am happy about that but also concerned that they would not suffer like this.  I do not know what my future holds but I am determined to tread as lightly as possible where my body is concerned.  Not that I wouldn't love to go out and bat a volleyball around or even go for a run with Luka.

But I am learning that those things are not going to make me feel any better.  What will, learning more about what I can do what I am still able to do and getting myself in alignment for that.

Whatever it ends up being.

Here is an article about a family who has EDS.  They live near each other and have learned to work together to accomplish the tasks in their lives.  The help of neighbors and friends also plays and important role.

This article written by Nicole Mattke shares a little about the signs of EDS.

15 year old Sarah Sickles shares about her life with EDS.

I had no clue what Ehlers Danlos Syndrome was.  I have learned allot on my journey so far, not just about this but about many things.  I realized that people with disabilities had limited lives.  I truly believed that their needs were being met by the organizations out there.  Wow was I wrong.

So I am going to work to continue to educate others about people with differing abilities and what they go through.  Through my eyes and what I personally experience as well as through the eyes and thoughts of others and their experiences.  I hope you will continue to follow me on my journey.

It has been an eye opening one for me that is for sure.  I think many people who have this happen to them give up.  I know the thought has crossed my mind a time or two.  But there is a reason that I am going through this and I am determined that it will not be in vain.

Besides the friends I have left around me are great, even though none of them live that close to me.  I am grateful so grateful that I made the kind of real friends that don't disappear when the going gets tough.

If you are out living your life and things are all going great for you.  Please consider that making real friendships can be one of the utmost important things in your life.  Be the kind of friend that you'd want a friend to be to you.  Treating everyone as you would want to be treated is something that has served me well.  I hope it is also something you can take to heart or already do.

It was one of the things that I was brought up doing and then my career with Mary Kay reinforced it.  I have very few regrets.  The regrets I do have are mistakes that will never be repeated again, so they are now learning experiences.  They are worth their weight in gold to me.

Some of the lessons I have learned have been hard.  Actually most of them are.  Being such a stubborn person, I seem to have to hit my head pretty hard to actually get something knocked into me.  ( Pardon my similarity to my physical condition.. )

We all go through things one way or another.  I just hope to have more grace than I have had in the past when I go through things.  It seems though that all of the tough things that you go through just prepare you for the even harder things yet to come.  At any rate I'd rather be prepared.

In the meantime.. I am trying to talk Jason into making our living room that we never use into a place to shoot more pictures.  We do things on the shoe string plan so if he goes for it we will be very inventive with our setup!  Hey, what ever works!  We did watch a great class on how to set up a photography set in a studio environment, and learn about lighting.  The budgetary things that they used in their class are now being added to  my wish list!   Right now I am just excited I get to continue learning!  Thanks !!  Check it out!  I think you'll be impressed!

I hope you have also enjoyed some more of my feathered friends that come over to eat!

Pink Doberman

No comments: