Monthly Archives: February 2012

Ehlers Danlos & POTS links 02-29-12

Today is Rare Disease Day.

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Ehlers Danlos & POTS links 02-21-12

Ehlers Danlos & POTS links Feb 11

This story is horrifying: Amanda Trujillo, a nurse in Arizona, was fired for educating a transplant patient about the patient’s post-surgical treatment and on non-surgical options like palliative care. I guess her license was taken away after the surgeon pitched a titty-fit. She was also ordered by the Arizona State Board of Nursing to have a psych evaluation because she participated in social media on the Internet.

I’m not a nurse, obviously, but I was raised by them in a hospital for the first 6 months of my life and have tons of respect and gratitude for them. And as an ill person, I appreciate that nurses like Ms. Trujillo advocate for patients and inform us about treatment choices.

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I’m having a heck of a time with Vanderbilt Medical Center this week – billing double-charged my debit card for 3 different bills (over $700) and they say it may take up to 4 to 6 weeks to put the money back in my checking account. Plus, I don’t even think I had an EMG in the first place.

I’m disabled & waiting on my SSDI application so $700 is a lot of $$$.

Product Review: FLA Activa Sheer Therapy Hosiery, 15-20 mmHg Thigh Highs Lace Top

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body. I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Product Review: FLA Activa Sheer Therapy Hosiery, 15-20 mmHg Thigh Highs Lace Top – Available in Various Sizes and Colors

FLA Activa Sheer Therapy Hosiery, 15-20 mmHg Thigh Highs Lace Top – Available in Various Sizes and Colors

Well, what can one say about compression stockings without sounding like a 80-year old? :/

At 15-20 mmHg, these aren’t super high compression but they help.

I have some higher compression Jobst stockings and they are too hard for me to put on. They go over the abdomen (unlike these stockings) to help with blood that pools there. But like I said, what’s the point of messing up my shoulder, back etc trying to get into them LOL.

Anyway, these stockings are good quality thus far. I have them in black and they are more like tights than sheer. (which I like). There is a silicone band at the top, which keeps them up if you don’t want to wear a garter / braces. I’ve had them several months now and they are wearing well.

Honey-Can-Do LBG-01148 3-Piece Mesh Wash Bag Set, White

Click to see all my product reviews.

Ehlers Danlos & POTS links Feb 8 2012

Ehlers Danlos & POTS links Feb 06 2012

EDS & Postural Tachycardia Syndrome links Feb 03 2012

I didn’t feel like checking if any of these are duplicates from before; sorry if they are.

Welcome

I use some acronyms here:

EDS = Ehlers-Danlos syndrome, a genetic connective tissue disorder

POTS = Postural Orthostatic Tachycardia syndrome, a form of dysautonomia (autonomic nervous system disorder).