Saturday, November 28, 2009

Something's Gotta Give!

Everyday God gives me a little ration of patience and a little "just get through one more...". Everyday He brings me a little closer to what He wants for me as far as healing and the rest of my life. I just wish I could see farther than the day to day.

Has anyone seen the movie with Jack Nicholson "Something's Gotta Give"? It's one of those movies where so many things happen and each time you as the viewer go "seriously? What else can happen? Really, "something's gotta give!!"

That's how I feel today!! God, Something's Gotta Give!!

I was looking at some pictures posted by some fellow EDSer's on the FB group and discovered that there are more things that I can "do" that I didn't realize were abnormal! Really? There's more?? Somethings Gotta Give! Oh, wait, our problem is things give a little to much!!! HAHAHAHA! Love the Irony??

I saw a screening tool today that I like. It said kids around 12 should be screened for Ehlers-Danlos and then it listed all the possible complications that come from it as reasoning for why. Here's a few: Aortic aneurysms, POTS, Chiari and Tethered Cord, pain, dislocations......... So, why is it not taken more seriously?

Doctors who are less than familiar say "you're just a little stretchier". Dr's who are familiar enough say "you're not as bad as you could be". Dr's who are very familiar just suggest you find a good pain management doc...

What happened to medicine being about preventing problems and catching them early? If EDS makes kids more at risk for tethered spinal cord, shouldn't they all be tested for a tethered spinal cord, regardless? It would be like saying eye cancer causes blindness but not testing their vision. I have lots of these What if questions. Unfortunately no one can answer them. And those who can make the research happen tend to not take seriously the experiences EDSer's have.

When will "You're just a little looser" translate into "Lets make a list of what we need to check into and what your future may hold." I think every EDSer should have a "Red Flag" list.

Just my two cents. Because Something's Gotta Give!!!

Shouldn't every EDSer have a head/neck MRI to check for retroflexed odontoid and damage caused thereby? And shouldn't every MRI of such said person be "red flagged" for the radiologist to see the retroflexed odontoid and "mild chiari" that reeks havoc on our lives. Shouldn't we, as parents of such and medical health professionals, be able to advocate for this?

I want to do so much research! I have so many ideas!! Arg!!
Something's Gotta Give!

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