Sunday, September 30, 2012

More Medical Drama & Other stuff

This month is just flying by! Can you believe Christmas will be here in just three months? I can't. We've had a busy month. Last week we celebrated our 26th Wedding Anniversary and our son's 24th birthday!! In the midst of all of our celebrating, I took our oldest daughter to the eye doctor for a routine eye exam. I'm so glad I went because it turned out to be anything but routine. The first thing the doctor noticed was that her eyes were not producing any oil at all. None. She said she'd never seen that in someone so young. She's trying conservative measures first; eye drops, warm compresses, massage and fish oil pill. If that doesn't correct the problem, she will start looking for the cause. It's possible that it's an autoimmune issue, of which our family has plenty. As if that wasn't bad enough, she later discovered swelling on her optic discs. They ran several tests, then called another eye doctor a few blocks away for his opinion. Well, he decided that she needed to be seen. So, we drove over there and had more testing done. She had a visual field test done and failed.They did more testing including an eye ultrasound. At this point, they couldn't find the cause, but were beginning to feel confident that it wasn't an emergency. Thank goodness!! There was talk of increased cranial pressure, the possible need for MRI's and a spinal tap. Since she wasn't having any other neurological symptoms they felt we could wait another week then come back for a retest. So, yesterday we went back and she did a bit better, but still had trouble with the visual field tests. The doctor said he thought this time it was more because she was tired. So, we are going back again in two weeks for more testing. Since Tim was with me, he looked in his eyes and mine. He found that Tim had something similar, so he's thinking it might be something that she inherited from him. Tim was so funny he told her that was her inheritance! There's a possibility that some of this could be related to EDS as the eyes are made mostly of collagen. They did find a cataract, which is most likely related to EDS. Anyway, I'm feeling better about the whole thing. It was so much to go through, both physically and emotionally. We ended up spending three hours at the eye doctors offices that first day!We were both exhausted!

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.

Shari



"The man is happiest who lives from day to day and asks no more, garnering the simple goodness of life."~Euripides






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