I have Ehlers-Danlos

Today was a good day. I finally got the answer I have been waiting so long for.  I have Ehlers-Danlos.

The missing link to my medical mystery and what is likely the root cause of the many years of medical problems in my life, from the more current to those reaching back to my childhood.

It was confirmed by a leading geneticist from Tulane Medical's genetics department after a thorough and extensive evaluation by him and his colleagues.

For those not familiar with it, Ehlers-Danlos (EDS) is a genetic disorder that effects collagen. Collagen is the main structural protein found in connective tissues of animals. Literally the "glue" that holds everything in our bodies together. It is found in everything in our bodies; Organs, ligaments, tendons, bones, cartilage, blood vessels, teeth, eyes, skin, everything.


https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome


There are various types of Ehlers-Danlos, some worse and rarer than others. Ehlers-Danlos is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen.  Some forms can be identified by genetic markers, and some have not yet been identified.  It's a lifelong, painful condition with no cure.

Yet I cannot express how relieved I feel to know it is indeed the missing link.

Having leading experts in the genetics field acknowledge my concerns and confirm what I suspected (and questioned years ago to other doctors only to be dismissed)... to finally have some kind of closure and explanation to why it never got better when doctors promised it would.

Going in expecting the worst... to be seen by another doctor who wouldn't listen and would just blame Fibromyalgia despite my clear clinical history. That scenario happened so many times over the years I lost count.

These doctors not only got my medical record ( you'd be surprised how many doctors I have seen who never did or never looked at it fully even when offered ).... and read it. All of it.

I mention something I wanted to be sure they knew ( and wouldn't know unless they read my history) and they responded not only saying they "read that in my file" but then made another random comment based on something else they read (that I had not brought up).... I almost broke down crying right there because it's been so long since I had a medical professional do that.  Know me and my full medical history.  Which is really sad to say it is not more common.

I knew in that moment it was all worth the fight to get this far.

They listened. We thanked them more than we have ever thanked any medical professional.

Now the battle for disability and Medicare really begins.

Designing All The Things

Making dog bandanas. I can't believe I didn't invest in a rotary cutter much sooner!  Also working on a huge overhaul of my website with new coding and updated layout. So much to do, and almost travel time!

Jail time now possible if you have a fake service animal

Service dog fakers better stop faking. This is spreading like wildfire. You will go to jail.

http://www.baynews9.com/content/news/baynews9/news/article.html/content/news/articles/cfn/2015/7/1/service_dogs_law.html

Airports And Dog Training Geekery

Decided to go to the airport today to reintroduce Journey to the scents and the hustle and bustle so we're ready for our flight out on Wednesday. They had a live band playing New Orleans style music, which was awesome.  While we sat there, several people stopped to say hello and thought Journey was awesome. One of them said her neighbor works for the sheriff's office and trains their cadaver dogs, which I thought was really neat.  Later an officer wandered over and I grinned when I saw K-9 on his uniform and he complimented on Journey and we started chatting about Shepherds and Malinois and other dog training geekery, which is awesome because there aren't as many really dog geek people down here as there were in Minnesota!  Turns out he's the K-9 Commander for the JPSD. I had to try really hard not to die from uber respect happy and ask him a ton of questions.

Many people know that tactical and law enforcement K-9 training has always been a huge interest to me since I was a kid and grew up watching Rin Tin Tin, and movies like K-9 with James Belushi and Turner & Hooch with Tom Hanks.  Back in elementary school the D.A.R.E officer I was friends with even got one of the local department's K-9 units to come to my house and do a demo with his dog partner, which is one of the huge things that inspired me to work with and train animals ( and why I trained my amazing childhood dog Norton with German commands! ). For a long time I have wanted to get involved in that area of professional training, but things got mixed up and dreams put on hold when Katrina turned everything upside down and in the years that followed things were so rough I never had the opportunity to pursue it further.

I almost didn't go today and decided at the last minute to swing by the airport while waiting for my prescriptions.  So that inner voice and gut feeling kicked in, telling me it was meant to be that I met this awesome gentleman today and got to share stories and dog training humor.  Funnier, he made a comment about almost getting the cadaver dog job and it just wasn't his thing, and I laughed and told him about the lady who said her neighbor was that trainer, and he laughed too and said it had to be the same person because she was the only one in the area.  Small world.  Huzzah for meeting awesome people!