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Hi There, I'm Kris. I'm a quirky sort who loves silly jokes, sunflowers, music, divine interruptions and music. I am devoted to my nerdly, ginger-haired husband, our 3 living & growing kids, and missing our 1 Babe in Heaven. We journey together through this life, dancing to our own beat, while learning each step as my children and I are effected by a life-threatening & degenerative chronic illness called Ehlers Danlos Syndrome (EDS). Please look on the "What is Ehlers Danlos Syndrome" to the bottom right of the page to learn more about EDS. I believe I have been given this journey in order to over come it, and this is my story of how I get it done.

Tuesday, December 20, 2011

a single step

Tomorrow is the day I consult with the new General Practice Dr.  I'm not as nervous as I thought I would be, but I'm not exactly hopeful either.  The way healthcare is set up here, all practices are connected; if you see one Dr., all Dr's can look you up in the network; I can see this being an advantage if you're currently being treated by a Dr. you trust.  I, however, am not.  My only experience with seeing a GP in this area was with a Dr. of Osteopathy (D.O.) who happened to have met & my daughter after her last GI surgery; she was in her wheelchair and hooked up to her feeding pump on a 24 hour continuous feed (she has a permanent g-tube), she'd also been in & out of the hospital for several weeks and I was naturally, exhausted- the D.O. perceived that I must be depressed- and nothing could change her mind....not very D.O. of her.  The next time I saw her was when my own GI problems started- she wanted me to take anti-depressents.  I asked her how that would help me with my symptoms and she told me that I was probably "just overwhelmed".  I explained that I know the difference between overwhelmed & feeling ill; I have been my daughter's only care provider since her birth and I am quite adept at not only caring for all of her needs, but also being her advocate and the educator for her medical care team.  It was the 3rd time I had seen this Dr. and it was 2 years after I was diagnosed with EDS, so I asked her if she had researched Ehlers-Danlos Syndrome yet....silence.  *sigh*So, I am off to see this Dr. tomorrow how will have more than likely seen notes about me from the previous "D.O.", may more may not have a pre-concieved idea of me, and there is nothing I can do about that.  I can, however, determine how I will present myself tomorrow.  I plan to simply to introduce myself and explain my history & my diagnosis. I will explain that I am mostly self-educated on my syndrome, and it effects me pretty severely according to my Geneticist <name drop here>. I will then ask if she has ever heard of Ehlers-Danlos Syndrome and whether she has or hasn't,if she is willing to research it and help me to build a medical team.  If she is not willing, I will ask if she will refer me to someone who she thinks might be.  If she is willing, I will ask her for the next step.

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