Welcome! I hear a herd of Zebra!

WELCOME!!!

Today is the first day the site is live. WELCOME!  I am at the Ehlers-Danlos Learning Conference in Baltimore so it seemed the perfect time to launch.

This will be a growing, living, developing blog. The tag that goes with the site name, "I hear a herd of Zebra" is important.  It means that we have a voice in the medical community.  It means that we are "we", a herd, a large group with needs not yet met. We are not "I", alone and searching for help. We are a HERD, together. HEAR us and find diagnostic criteria, research funding and appropriate treatment.

I don't know for sure the direction I want to take is lessons learned and tips and tricks.  Issues covered will be Ehlers-Danlos, but also invisible illness.  We each have our own medical issues, none of us are the same, but I will blog from the perspective of my family and share the experiences of others.

I am at the conference so come find me.  I am wearing a long grey dress and a zebra print overshirt. I am sitting in the back of the room at the second table from the right.

I would like to start with a challenge to everyone that reads this blog.  I will be taking comments and discussion - rules to follow.

Challenge: I would like everyone I can find to come fill out a post-it and share something you wish you had known earlier in this journey. I am going to start to make a "lessons learned" page.  Maybe we can make the Zebra journey easier for everyone.  There is always something to learn.

I will start.

Lesson Learned: One simple lesson I learned is that doctors write anecdotal information in medical records that they don't share in the post - visit paper they give you.  If one happens to think you are "faking" or a hypochondriac each doctor thereafter will read it and start to dismiss your problems.  Ask for those notes.  It is your right. If there is something that you think is wrong or misleading, ask them to change it. Doctors that follow then make medical decisions based on what they see, not based on doctors that don't believe you.

That is my first tip.  Hope it helps.