Sunday, April 10, 2016

Do Tell

Photo mine. 

To those lucky ducks that were able to attend the Sjogren's Syndrome Foundation National Patient Conference in Seattle this year: I would love to hear from you! I was unable to go for a whole lot of wah wah wah reasons, but am anxious to hear all about it. Drop me an email at or leave a comment below.

Gee. I wonder if Super Hydrating Nixie was able to fly over?


Amy Junod said...

Awe! Isn't she the cutest! She's a little faded now but still the spirited little water sprite that cheers me up!
Nixie didn't go but some of her friends from the Dallas Sjogren's Foundation Support Group went. (I should have sent Nixie along with our Leader Cathy!)

The Foundation was offering free passes to some of the members. As I started typing my info to enter the contest I deleted my name. Honestly, even if I was given tickets I felt as though I wouldn't be able to attend all of the seminars at the conference. I've felt that for years now and wonder if others have felt the same.

I've since learned that they have dropped the number of days of the conference. Still, I imagined myself needing an interpreter for all of the medical stuff and then for someone to translate what my Sjogren's mouth was trying to say. Rogue Tongue is the term I call it. A fun neurological symptom that's not often enough spoken about among us Sjoggies, for obvious reasons.

Sorry to take the space as you meant to hear from members that went but I just really wanted to know if I wasn't the only one that felt this way about the conference.

Julia Oleinik said...

Amy: I have unlimited space in the comments section of Reasonably Well, so no worries about lengthy comments, especially those that have really good points to consider like yours!

Anonymous said...

way off topic. way off. Is burning mouth syndrome related to Sjogrens? Thank you. So sorry, I'm off topic. Kathryn

Nicole said...

Hi Kathryn,

Yes it is. I have geographic tongue that started out with burning mouth. Still not sure about the exact cause, but it is common among Sjogren's peeps.