After having attended my first national Sjogren’s Syndrome Patient Conference last year & having enjoyed it immensely, I am officially excited to attend this year’s conference. Of course I feel that it is my duty to turn into a Sjoggie Sponge & bring back all of the latest cutting-edge information, research and SSF directions to our Sjoggies In Pittsburgh (SIP) support group. In fact, that will be our next topic at our May 3, 2014 SIP meeting. And for those of you who understand my cognitive decline..don’t worry, I’m taking Sandy, my SIP Co-leader, and a paper/pen for my information back-up system.
Put On Your Trusted Shoe Inserts..
Yes, Sjodry and Sandy (and hopefully some of our SIP members from Pittsburgh) will be participating in the Chicago Sjogren’s Walkabout. It is our chance to put in our most trusted shoe inserts and take to the (hopefully warm & sunny) streets of Chicago to help raise funds for the Sjogren’s Syndrome Foundation. But don’t be alarmed because I don’t SWEAT! Or at least not much. LOL, can you relate? Not sure if that’s a Sjoggie silver lining here or not?
Everyone has their own way of coping with their illness(s). For me, I blog, I use humor & I reach out to others to help them in our shared journey of living with Sjogren’s and chronic illness. I don’t know about you..but I do my fair share (and my husband might disagree with the word fair ) of whining about how bad I feel. In fact, I could probably just take a piece of paper & write the same sentence multiple times on a page & then just complete all of the blanks which apply on that or any other given day. So when I get a chance to help the foundation or someone else in a way that I know I can accomplish without triggering a a flare…I am there.
For those of us who live with Sjogren’s Syndrome each day, we have learned over the years about how many people have never heard of, understand or even treat Sjogren’s Syndrome. To me, that serves as a call to action! I have spent thousands of dollars through the years in trying to find a physician that could identify what was and is still happening to me, diagnose it properly and then find an effective treatment plan. I want the best quality of life that I can have. I believe that all Sjogren’s patients deserve to have the best quality of life that they can achieve. That means doctors, dentists, dental hygienists, immunologists, rheumatologists, eye doctors and all of the many other medical practitioners in our communities at large, MUST become knowledgeable about Sjogren’s Syndrome in every aspect. It means that we need copious research to develop definitive tests and treatments for the disease.
A Call To Action!
So how can you help?
There are many ways to lend a hand to the Sjogren’s Syndrome Foundation during April, which is Sjogren’s Awareness Month (or any month for that matter). Becoming an Awareness Ambassador for the foundation is a volunteer role that requires whatever amount of time & energy you can share, whenever you feel like sharing it. There is only one task for the Sjogren’s Awareness Ambassador, and that is to deliver Sjogren’s Syndrome Information to a health professional. The foundation may choose a specific time period and designate a specific type of doctor that they would like to target with the information. Or you can just pick. Now think about how many doctor’s appointments we have? I always have at least 2-4 doctor’s appointments monthly, and sometimes more. All I do, is pick up a small stack of Sjogren’s materials that have been sent to me from the foundation. While I am at my appointment (either before the appt. or after), I let my Doc know, that by the way, as an Ambassador to the Sjogren’s Foundation, I have some materials for you about Sjogren’s Syndrome. That’s it! Done…I have just done my Ambassador duties. Again, no sweat.
Another way that you can help is by participating in a Sjogren’s Walkabout. The foundation folks are really nice in helping to plan the walkabout routes. You see, they know that there are a lot of Sjoggies (like me) who have foot neuropathies and may not feel like walking too far. But since I have already completed one Walkabout last year, my feet have given their ‘Not Too Far Or You’ll Be Sorry” stamp of approval for the Chicago Walkabout. But you still may be saying, ” My feet won’t allow it “ or maybe you’re not even coming to the conference this year. And that’s okay too. That is why the Sjogren’s Foundation has teamed with with the First Giving Folks, an organization that helps Non-Profit Organizations to set up various fund-raisers in a diverse group of cities.
And with that….
comes my.. “if you are so inclined pitch, with an opt out choice”. Some people choose to support others in their Walkabout efforts. Sjodry has created a Chicago Walkabout Team named in honor of the (SIP) Sjoggies In Pittsburgh Support Group in which she co-leads in Pittsburgh, PA. Both co-leaders of the group and select Pittsburgh SIP members who have chosen to attend this year’s conference will revv up their enthusiasm for a Walkabout Chicago en Sjoggie masse.
If you would like to support us in our fund-raising efforts, you may find Sjodry’s (Sandy Burkett) First Giving Page at this (link).
If I look cool after I complete the walkabout…pictures will follow.