Monthly Archives: June 2010

EDNF has banned me

Well the Ehlers Danlos National Foundation (EDNF) has banned me from asking questions about the way they run things, evidently. My last post was deleted. There was nothing offensive in it or antagonistic.

I know non-profits are hurting right now & they mentioned web site expense. Something with which I have a lot of experience so I gave them some tech/web free advice – open source is cheap and robust and lots of non profits use it.

The post was deleted and I’m banned from further participating.

EDNF is the most institutionally defensive organization I’ve ever encountered – and I’ve mostly worked for .orgs – any time anyone asks any questions about how things operate, they get their head cut off.

What, for pete’s sake, is wrong with membership wanting to be informed??

It makes me sad because EDSers need all the help we can get.

I don’t think I’ll be going to the conference now.

I know the National Marfan Foundation has EDS under it’s “other syndromes” umbrella and people there are pleasant and forthright because I’ve hung out on their site too.

If any other EDS organizations wants any free IT advice let me know – I have a Master’s and had 15 years experience before EDS and POTS whomped me.

-Jilly

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National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

I really dislike having to ask people for help but lately I’ve had no choice so I’m sure I’ll get over my aversion quickly haha. Need help shopping, getting things in and out of my car, etc. I’ll be chauffeuring a bag of poultry feed that is in my front seat until a neighbor can come over and take it out of there for me.

Trigger point injections yesterday at the pain clinic. So painful yet feel good and relieving at the same time haha. Some of my shoulder blade muscles are stuck. I’m going to try myofascial massage. That helped once last year with my leg muscles. My fasciae (?) gets stuck sometimes. Also started a new medication. Not a pain medication, but something that might help with my fatigue. Took 1 this morning & feel a little bit spaced out. Not sure how driving is going to factor in with this; maybe I’ll acclimate.

I think my beta blocker quit working because my HR is 100-130 walking around. Maybe it is the heat, too.

I’ve been on a diet of very reduced carbs & I cannot tell any difference whatsoever in my mood or body – except the standing HR is high again LOL. (I need to lose about 50 pounds that I’ve gained since my hysterectomy 2 years ago and the beta blocker etc.) I also haven’t lost much weight. :/

Links:

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Long-Range Plan FY 2010-2014: PDF File

Enabling tools for engineering collagenous tissues integrating bioreactors, intravital imaging, and biomechanical modeling Published online before print December 1, 2009, doi: 10.1073/pnas.0907813106 PNAS February 23, 2010 vol. 107 no. 8 3335-3339

Adventitial fibroblasts in vascular structure and function: the role of oxidative stress and beyond Can. J. Physiol. Pharmacol. 88(3): 177–186 (2010) | doi:10.1139/Y10-015 | Published by NRC Research Press / Publié par les Presses scientifiques du CNRC

Cell interactions with the extracellular matrix and the journal issue is here Cell and Tissue Research Volume 339, Number 1 / January, 2010