It was never my intention! Why should I, I find my life pretty boring! 'Pretty boring', my best friend Vicky said, 'it's everything except boring!' I tried every excuse possible: What should I write about? I have nothing to tell? etc, etc, ...
Well, her I am with my own blog telling you about my daily life and thoughts, as an Ehlers-Danlos patient. I don't plan to bore you with always and only talking about EDS, but rather tell my story about my life, how I think, how I see things, how I experience things, how I cope with daily struggles!
I chose to write in English, although it is not my original native tongue. I was born in Germany with a Dutch father and a mother with Dutch-Indonesian roots, grew up in The Netherlands and immigrated to The States at the age of 12 after my mother remarried a Britt! So I spend my teenage years till my 26st birthday in The States before moving back to Europe, The Netherlands first to end up in Belgium married and becoming a Belgian citizen. English is second nature to me, I still dream and think English!
It was a hard and long road, the journey to Belgium! Restarted my life several times. My husband Ronny is my second husband but the only true love of my life! We have three children, Ashley (25), James (18) and Jason (11 almost 12). We have struggled through many battles of life, but that has made our love for each stronger and has brought us closer to each other. Over time in my blog, I will tell you a story here and there.
The struggle in finding the correct diagnosis has been long and difficult. I have had health issues, pains and complaints as long as I can remember. Seen many doctors, have had several wrong diagnoses to eventually end up with the diagnose of Ehlers-Danlos Syndrome, Hypermobile Type overlapping with Classical. Although I pretty much found the diagnose myself, well later confirmed by Genetic Specialists from The University Hospital Ghent, it was difficult to accept the diagnosis for me and my family. EDS can be quite a disabling illness. All my joints are extremely hypermobile and regularly on a daily basis dislocate partially or completely. I walk with a crutch and for longer distances, I use an active wheelchair. I use orthotics, mostly silver splints, and have a prosthetic in my right knee. I've undergone many operations and I am full of scars spread all over my body. Not normal scars but wide cigarette type scarring typical of Classical EDS. I have all kinds of other health symptoms typical of both types of EDS.
The symbol for EDS is the zebra. I'll explain another time the how's and why's. For this reason I have chosen to call my blog 'Zebra Safari.' It represents the wild and excitement in my life as I try to cope with daily life, a family, EDS and the organisation as the chairperson of the Flemish Patient Foundation for EDS and Marfan.
My daily life is a Zebra Safari!
