I'm sure many of you know this, but for those who don't, and as a reminder for those who do, EDS is a multi system disease. It can affect your eyes, ears, GI system (from start to finish), nervous system, muscles and joints (of course). Sadly, many doctors do not know this. They think of EDS as only being related to the joints, but since the body is made up of so much connective tissue and EDS is a connective tissues disease, this is not the case. Hopefully, the word will get out and the medical community will become better educated about this condition. Which leads me to my next point....
I'm in the process of working out a plan to become an advocate for those with EDS. Right now, it will probably just consist of me getting official materials from the Ehlers Danlos National Foundation and other resources and sending them to medical professionals and other EDS patients to give to their medical team. I'm hoping, along with another EDSer, to get a packet of information together that can give medical professionals information about diagnosing and treating all of the different types of EDS. I see visions of this becoming something more down the road, but quite honestly, I'm not sure if I will be the one doing it or not. But, I'm excited to get the ball rolling!! Stay tuned for more info.
More stuff. October is shaping up to be a very big month, socially, for us. We have four events we are expected to attend in relation to Tim's work. I may have mentioned this, but in case I didn't, one of the events is a formal ball in French Lick, Indiana at the restored West Baden Hotel. We went on a weekend Honeymoon in French Lick and actually saw the Hotel before they began renovations. Boy, was it in bad shape. It's simply beautiful now though. I'll try and post pictures when the time comes. I'm a little concerned about this event because we are staying overnight. I hope I do okay. One good thing is that it's a charity ball for a local hospital's foundation, so there will be plenty of doctors there!
Besides, our social engagements, we have several doctor's appointments. One of which, is my trip back to Cincy. This time, as I've shared before, our oldest also has an appointment to get her diagnosis. I guess that's her inheritance from me!
Well, I think it's nap time, so I better get going.
"The man is happiest who lives from day to day and asks no more, garnering the simple goodness of life."~Euripides