Zsazsa wrote:
Oh dear, Ehlers-Danlos Syndrome is a very serious medical condition...I can understand why you don't want to put another diagnosis on your daughter's plate. I hope your daughter is under the care of an excellent medical physician.
Nice meeting you!
She has a great Physical Therapist, and a very good rhumey. We just switched Peditricians, and we've only seen the new one when she had a virus. But her "well" visit is next month and we'll gage how good the new Ped is then. I can be harsh on docs...but I have had so many bad ones for both myself and her that they have to EARN my turst at this point. My daughter likes the personality of this one tho. She liked the last one, but that doc was the kind who would never be there when you needed her. I cannot have that. I have to have one that actually shows up to work on a regular basis. We'd end up seeing the guy who would cover for her, and he was useless. He sounded like an announcer on a pharmacutical commercial, and he would not shut up and listen. Like some others, he'd get this deer-in-the-headlights look about him when I mentioned the EDS. I have learned the hard way how to pick up on the expression of doctors when they have no idea what you are talking about but do not want to admit it. A LOT of practice went into that. Its fairly easy...they all get the same exact look and try to change the subject on you.
So a new Ped, and we shall see. My daughter handles the EDS thing with grace and dignity, and has an almost sarcastic "Well why wouldn't it be?" attitude about it. But she also thinks I am the only person in the world that she can relate to. She doesn't have many friends, tho she doesn't get bullied much as most of the kids like her, they just cannot break through to her. She has one female friend at school, an older girl who fell behind in homeschooling and was placed in my daughter's grade in coming to school in the 3rd grade (they are going into 8th now). This girl is very low key. Her other good friend is a very androgenous boy, whom is always in trouble, and she rarely understands why he does what he does to get in trouble but she just accepts him as he is, and I adore him as well. She doesn't associate with the other girls, tho there is only a slight issue with one of them, they tend to just leave one another alone. My daughter doesn't have interest in what other 13 year old girls like. Other than a celebrity crush or two, fashion and boycraziness and so on aren't her thing. Her thing is mythology and magical creatures and demons and the like. From fairies to vampires and zombies to crackens or griffins and unicorns to Artemis. Now other little girls like fairies and unicorns, I know. But most cannot tell you the mythology behind them, the different theories or myths created by different authors regarding magical and/or immortal creatures, or follow you around the house wanting to know why different web sites list a specific god as the god of different things, why can't they get their stories straight? Me, I don't have an answer for that. I often wonder things like that myself.
The occasional teasing she does get doesn't really seem to phase her much. She gets teased sometimes for being so quiet, but its usually boys doing it who try to pull her out of her shell. They are drawn to her but she is as oblivious when they are crushing on her as she is when they are teasing. She has a wild class...I think out of the 26 or 27 kids in her grade, only 8 are girls. So, they are almost always in trouble. When the boys complain to her about the teacher "not liking me" she tells them if they would just be quiet now and then and learn to behave they wouldn't have these problems. LOL...
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One may have a blazing hearth in one's soul and yet no one ever came to sit by it. Passers-by see only a wisp of smoke from the chimney and continue on their way. -Van Gogh
04 Jul 2010, 6:56 pm
