Personal Story: Learning to Live with Sjögren’s Syndrome

Last updated: November 6, 2014

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Lynn Chesters is Cynthia Lockley's sister-in-law. If you're a tennis fan, you know that Venus Williams has Sjögren's Syndrome; so does Lynn. Lynn sent Cynthia her personal story for the AccessAbility SIG.

Sjögren's Syndrome Foundation logo

What is Sjögren's Syndrome (pronounced Show-Grins)? Many people have never heard of it including dentists, doctors, and nurses. Thanks to the Sjögren's Syndrome Foundation, the word is getting out more and more.

Close to 6 years is how long it took to find out what was going on in my system. It started with dry eyes, and always one eye that seemed to be hazier than the other every time I blinked. Annoying but not a concern. About 5 years ago the pain in my body started slowly, but I was getting close to 60 so, why not have some pain? But this pain didn't seem to be in the joints, necessarily. I used my dad's old cane just to get out of bed some days. It was in my muscles and joints, an all-over inflammation, as if I had a fever. It would come and go, staying with me for a week or so. After a few years the pain became so bad I no longer walked to and from the train station to work, about a mile. Breathing became difficult with mild exercise. I was tested for heart trouble and lung dysfunction. My heart was OK but my lung function could have been better (Sjögren's affects lungs too). Doctor's could see no real reason for my lung problems. So I went on my way, taking cabs. walking at a snail's pace, and stopping frequently to ease breathing. I finally just succumbed to taking cabs to and from work. I was an active hiker, cycler, and golfer: this was perplexing to me and depressing!

Finally, my family doctor sent me to a Rheumatologist who discovered the blood marker for Sjögren's. She put me on Plaquenil (Hydroxychloroquine), which slows down the attack on a body's exocrine glands that affect the eyes and mouth and any organ that secretes moisture. It has helped quite a bit with the pain. I still get "flares" of aches and pain but they last just a few days compared to the week they used to last. The dryness in the eyes is progressively getting worse, especially at night. I apply eye drops at least a half dozen times every night. They hurt if I don't. I know I could help myself more with a Mediterranean anti-inflammatory diet and more fish oil. It's something I am working on.

The Sjögren's Syndrome Foundation has extensive information on their site at http://www.sjogrens.org. It has been the best $35 dollars I've spent in years to belong to this Foundation and that includes a newsletter. They have a calendar of events and seminars. Something new on this site that I hadn't seen before, is a video. The "A Place to Begin" video introduces you to three patients who share their experiences. You can watch this video without joining the foundation. There are also local support group meetings that are run by patients in the U.S., Canada, and internationally. I go to one in a western suburb of Chicago. There is a list of local leaders for these meetings on the Foundation's website with their email addresses. The Foundation's website has ton of helpful information and resources but my best experiences have been with people at the seminars and local meetings. I always learn something from them!

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To learn more about Sjögren's and find out what resources are available, contact the Sjögren's Syndrome Foundation online at sjogrens.org or by phone at 800-475-6473. Also see the AccessAbility SIG's list of resources and information on this website in Sjögren's Syndrome.

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In memoriam: Fabien Vais

Last updated: October 13, 2014

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It is with great sadness that we have to tell you that Fabien Vais, one of the founders of the AccessAbility SIG, passed away September 17.

Honors Banquet Reception: Fabien Vais with the AccessAbility SIG 2005 Pacesetter Award certificate.

Fabien and the rest of the founding team of what was originally the Special Needs Committee worked hard to make known the concept of “accessibility” to the world of technical communicators. Fabien was a stubborn, tireless, and passionate advocate for accessibility. He initiated the conference accessibility guide to the annual STC conferences. In the very first issue of our now defunct Achieve! newsletter, Fabien explains how he and Dan Voss toured the site of an upcoming conference and discovered “that never-ending corridor leading to a dead-end with seven steps! We had passed an elevator that would have avoided the cul-de-sac 150 feet earlier, but there was no sign directing individuals in wheelchairs to take that route. That was a perfect example of the importance of proper signage.”

Fabien touched the lives of many members of the SIG and the STC. Here are some photos that are bound to bring back some memories.

At the 2005 STC Annual Conference in Seattle, Washington, Cynthia Lockley took the following photo at the AccessAbility SIG mixer. On the left is Dan Voss with a glass of wine, Brenda Huettner in the middle with a big smile, and Fabien Vais on the right. Fabien is not wearing his conference badge around his neck like the other two, but he is wearing the enamel AccessAbility SIG pins we made as conference giveaways that year.

Dan Voss, Brenda Huettner, and Fabian Vais at the AccessAbility SIG mixer.

There are quite a few photos of Fabien from the 2003 STC Annual Conference in Dallas, Texas. Gail Lippincott took a photo of Jodi, Gail, Melissa, and Fabien in front of a statue of a black-colored elephant with large white tusks. Jodi and Gail are standing on the left, Melissa is seated in front of the elephant, and Fabien is in the wheelchair he used for traveling.

Jodi, Gail, Melissa, and Fabien.

When Dan Voss and Fabien got together, things always got silly. In this photo, Dan is passing on the SIG Manager position to Fabien. The photo is called “Deputy Fabien and Sheriff Dan” because both are wearing 10-gallon white cowboy hats (they are in Texas!) and blue vests each with a giant sheriff star made out of yellow construction paper!

Deputy Fabien and Sheriff Dan

Later, still in Texas, Fabien Vais donned a monk’s cloak! In this photo by Cynthia Lockley, he is seated at the dining table looking very much like the photo’s title: His Reverence. Three other members are seated at his table. Two seem very respectful of His Reverence – Gail Lippincott on his right in medieval dress, and Judy Skinner seated across from him in a bright turquoise shirt. The man on Fabien’s left seems more interested in studying the menu!

Fabien Vais Reverence

Cynthia Lockley took another close-up of Fabien as a monk. He looks seriously into the camera with the brown hood over his head, but the dark locks of the monk’s wig peeks out from under the hood in contrast to the elegant silver of Fabien’s hair and beard.

Fabien Vais as a monk

Cynthia also snapped a photo of Fabien at the SIG luncheon. In this photo, Fabien is seated with Mike Murray at the typical big round luncheon tables they have at conferences. With only glasses of ice water and ice tea and a spoon in front of them, it looks like this was taken right before dessert or coffee time.

Fabien Vais and Mike Murray at the SIG luncheon.

At the 2002 STC Conference in Nashville, Cynthia snapped a photo of Fabien discussing plans for the progressions with Lori Gillen at a small round tables with white cloth covering.

Fabien Vais and Lori Gillen

In Chicago for the 2001 STC Annual Conference, nine people got together for this photo of the Special Needs Committee business meeting. Fabien is seated in the front on the left and Cynthia Lockley is seated on the right. The other seven people are standing in the background. Dan Voss is holding a light blue paper flag with the logo of the Special Needs Committee. On the table in front of Cynthia are a stack of brochures about the committee.

Special Needs Committee Business Meeting

At the 2000 STC Conference in Orlando, Carolyn Kelley Klinger snapped a photo of Fabien Vais in his wheelchair and Cynthia Lockley in her scooter smiling in the sun by the Dolphin Hotel pool.

Fabien Vais & Cynthia Lockley

Travel down memory lane and see more photos of Fabien in our photo albums on Flickr. Please do share your memories of Fabien in the comments.

We extend our condolences to Fabien’s family.

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New Discounts for STC Members Only!

Last updated: October 6, 2014

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STCaffinity program logos
STC has improved the STC Member-Only Affinity Program! In an effort to add continued value to your membership, STC has established new relationships with:

Liberty Mutual–You could receive exclusive savings on your auto and home insurance. With Liberty Mutual, you get service and support when and where you need it, plus the latest tips and tools to help keep you and your family safe.
OfficeMax–Enjoy significant cost savings on more than 25,000 products and more than 5,000 environmentally preferable products, as well as savings on digital print services, furniture, technology, and paper. Whether you order online or at an OfficeMax store, your exclusive STC member discounts apply.
InterCall–Get special member rates for audio and web conferencing. InterCall is the world’s largest conferencing services provider and is consistently noted by industry experts as a market leader.
Paycom–Provides members with a cost-effective solution for payroll processing and HR services. Paycom offers a single-database application with full-service functionality that requires no integration from other programs or services.

STC's programs are easy to implement because STC provides online company portals for easy enrollment. Each company was chosen carefully to provide you with discounts and services based on members' particular needs. Information on how to redeem the affinity benefits can be found by logging into your member-only account on stc.org.

Your membership is important to us and we will continue to add more to the list in the coming months. Be sure to take advantage of these current discounts through our Member-Only Affinity Program today!

If you have any questions or concerns, please contact email hidden; JavaScript is required or call 571-366-1914.

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STC Member & Student Member Benefits Flyers

Last updated: October 6, 2014

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Why should you join STC and the AccessAbility SIG? The AccessAbility SIG offers opportunities to network with others in your field, to explore your interests, and get information to enhance your education and skills.

STC has the resources you need to help you do your job better and move your career forward.

Read about the 2015 STC member and student member benefits:

STC 2015 Membership Benefits Flyer
Download the STC 2015 Membership Benefits Flyer .pdf
STC student membership benefits flyer
Download the STC 2015 Student Membership Benefits Flyer .pdf
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Join the STC IDL SIG for “Webinar School” on October 13, 2014

Last updated: September 24, 2014

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Instructional Design & Learning (IDL) SIG
Instructional Design & Learning (IDL) SIG

Dr. Elizabeth (Bette) Frick of the Text Doctor LLC will present tips for planning and delivering virtual meetings and training to members, clients, and employees.

Time:
1:30 PM – 3:00 PM EDT
12:30 – 2:00 CDT CST
11:30 – 1:00 MDT
10:30 – 12:00 PDT

Payment Information:
$20 IDL SIG Member
$30 STC Member
$50 Non Member

For more information about the webinar and to register / pay, go to http://www.stcidlsig.org/news-and-events/upcoming-webinar-101314/.

If you have any questions, please contact Preeti Mathur at email hidden; JavaScript is required.

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