It’s Mah Eeeeds!

img_2713We don’t have an official diagnosis for any of my children yet and probably won’t for a while as we are not having any of them tested yet. They all function well and they don’t really want to get checked out at this point and that is really cool with me. They at least understand a bunch of stuff now with my health issues, and can still do things now to protect their bodies for the future, regardless of whether they have it or not. I’m pretty sure that they are all affected, but one of them way more so than the others and it answers some pretty major questions and problems that we have had to deal with since he was born.

We are one of those slightly odd families who do crazy things to very normal names, and have all kinds of semi code names for things and speak our own half language (though when I say it like that it sounds like a lot more words than we actually use are changed but it’s not too bad). Anyway, using the words “Ehlers-Danlos Syndrome” is a mouthful and means nothing to anyone, and even “EDS” is somewhat formal and doesn’t exactly roll off the tongue, so I guess that I should have known from the get go that within a week or so of diagnosis it was going to be changed into something more manageable, … but more than that, something less … “official”, “medical”, “boring”??…

And without taking anything from ANYONE else and whatever they call it, I could see the children’s eyes rolling every time anyone said this or that about “EDS” and it sounding a little … I don’t know … pathetic or that we were being overly sensitive … and I REALLY don’t want what we are dealing with to become something that no one wants to hear about.

So it should not have surprised me that very quickly the son with the most issues began referring it as “Mah Eeeeeds” !!

Mah as in “my” …


Eeeeds is “EDS” but pronounced like needs, or feeds or creeds …

So when he hurts himself or bumps into things, or one of the many things that he has always done and didn’t know why, he now says “oh don’t worry, it’s just mah Eeeds!” and it sounds way less … stuffy?

And the next thing we knew we were all saying it and so when I meet someone new I have to be careful to explain that it is EDS and not “Mah Eeeeds” … which I have to say, even saying it I feel better … so from now on, even in my writing, …. it’s Mah Eeeeds!



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