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mind, body & EDS

| living with a rare, invisible, genetic disease |

Month

January 2016

Talented Chefs at the Greenbelt Marriott Hotel!

As you all know from reading my “12 Facts About Me” , one of the struggles I have with my EDS and PoTS is dealing with a forever ending list of intolerances to food Continue reading “Talented Chefs at the Greenbelt Marriott Hotel!”

Snowzilla Blizzard!

Just after being discharged from hospital, we experienced one of D.C.’s worst ever snow blizzards on record! Around 35 inches/3 feet (~1 meter for you English folks).
Continue reading “Snowzilla Blizzard!”

My Hero: The neurosurgeon who saved my life

It’s about time for you all to recognise and honour the most remarkable talented man, who I can call “my hero”:  Dr. Fraser Henderson. If it wasn’t for Dr. Henderson’s extraordinary and exceptional neurosurgery skills, I would have not made it alive through the neurosurgery Continue reading “My Hero: The neurosurgeon who saved my life”

Finally The Day Arrived: My Time In Hospital January 15th 2015

Reunited with my twin sister

“She is your mirror shining back at you with a world of possibilities. She is your witness who sees you at your worst and best but loves you anyway.  She is your partner in crime, your midnight companion, someone who knows when you are smiling, even in the dark. She is your twin sister”

Continue reading “Reunited with my twin sister”

Lifesaving Neurosurgery Success!

I am relieved to announce that my neurosurgery that took place on Wednesday 13th January at 7:30am was successful, even though there were many unexpected serious life-threatening complications that occurred during the five hour operation. The specialist neurosurgeon expressed that he was amazed how I even made it alive here to the USA Continue reading “Lifesaving Neurosurgery Success!”

Morning Walks: Talking about EDS & PoTS

Pre-Op tests have been checked off our long list of “things to do” before my neurosurgery on Wednesday 13th January. All tests went well and I have been given the “thumbs up” for my surgery to go ahead! This has definitely settled my nerves and the nurses have assured me that I am under the best hands of care.

Discovering D.C.

After a nine hour flight full of turbulences on Wednesday, we (my mother Jayne and I) have finally settled and ‘found our feet’ on the other side of the ‘pond’. Today was our first day of being typical tourists in Washington D.C. Continue reading “Discovering D.C.”

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