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Turns out my new approach is right on the money.


Friday, May 17, 2013

Recently I started participating in an Ehlers Danlos page on Facebook, as well as the Ehlers Danlos National Foundation. The information I'm gathering from these pages is INCREDIBLE and amazingly validating. So much of what they're posting about the condition explains my symptoms, and contradicts my doctors who know little or nothing about the condition (and I'm starting to suspect have no interest in learning about the condition either).

A few hours ago they posted a portion of a paper/lecture by a doctor who treats patients with my specific form of EDS. I searched online for info about the doctor then searched to find the full text of the paper/lecture. Reading this is like reading the history of my life! I could print this out and highlight everything that relates to me and have more than half of it highlighted. Included in there is a section that says almost the same thing I said in my last blog! This also talks about other symptoms/conditions that I've been too AFRAID to tell my doctors because they will never believe me!
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In fact, he even states in there that continually pushing through the pain and not getting proper treatment will cause the conditions to worsen more and more, which means THEY CAN NOT TELL ME THAT THIS IS NOT REAL AND THAT I'M FAKING OR MAKING THIS UP!

If anyone has some free time (warning: it is LONG) and wants to read it, it's in pdf format here:
www.dynakids.org/Documen
ts/hypermobility.pdf


I'm actually still in shock here as I write this; it seems almost too good to be true that I have proof now!
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Member Comments About This Blog Post:
MISSCUS 5/21/2013 7:04PM

    It is so rewarding to finally have some validation. I am going to read the link even though you warned it was long. I still keep you in my prayers. Are you getting any support yet, or disability?? I sure hope so as I know you deserve it. I haven't heard from the Ellen show at all. I might submit your info again. Bombard them a "little".

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MUTTSBARK 5/20/2013 9:13AM

    Doctors have huge blind spots. Don't they? I hope your new FB page will give you plenty of info to help. You sound so nice and interesting ... Something has got to help.

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RISINGBLUESTAR 5/19/2013 12:00AM

    emoticon Finally, proof! Getting proof and finding information is very rewarding. When your doctors tell you that you are making things up, ask them why you would want to spend all of your times making appointments and seeing them when you could be out in the world doing other, more appealing things if that was really, honestly the case! I am so glad that you found this paper. Would it be a possibility for you to get in touch with the doctor who wrote it? Maybe he could offer the help that you have been looking for!

Good luck Sheri! :)

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JAMER123 5/17/2013 9:53PM

    So glad you found this group and are finding so much info on EDS! Hoping it is going to help your Dr. or another Dr. treat you to ease your symptoms. Good luck!!

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MOM2ACAT 5/17/2013 4:19PM

    I'm glad you found that group!

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SHERRYGAYL 5/17/2013 7:22AM

    emoticon That is WONDERFUL! I know exactly how that validation feels and it's probably my favorite feeling ever. I spent nearly half my life telling doctors, "I felt a tearing sensation and it's hurt ever since then" just to be told there's nothing on the x-rays and therefor no damage before this wonderful lady finally ordered an MRI. "I'm going to order an x-ray," she said. "It won't show anything. I've had a bunch of them over the years," I objected. "I know but they won't let me order an MRI unless I do a cheaper test first," she replied. And when I got the report and it used the word "tear", I cried. But, hell, you know me. I cry at everything emoticon

Anyway, I am so happy for you! That is probably tied for the best thing that could have happened for you right now! I'll be busy most of today but I'll text you later emoticon

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