I am an overly emotional person, just the way I’m built. I often wonder that I’m not doing enough to support everyone Is there a need for a sponsorship program? It’s just a thought. To help building a ramp, giving a physical hug or what is needed to someone I need. Does this support already exist and I don’t know of it. Most of the time here we just need to vent or get suggestions to our problems. I see some that I think need more contact and it bothers me, as I should be doing… read more
Been here a very short time. But after reading everything, it's comforting to know there are somany of us drifting around and around on this AS boat. This place might be the place where in the sharing we confirm we are not insane, there is not enough medical information out there to get doctors steering in the right direction. AS is not something a doctor can see on the outside...only knowing how to read the radiology correctly confirms it. B27 positive is a clue, nothing more. It cannot confirm AS. I have had to learn the radiology and read my own disks. Of course, local AS support groups are great...if one can get there. I cant. So you guys are my support group! If anyone knows a really good AS doctor, no matter where, please share name. If I can find someone knowledgeable enough to have an intelligent conversation where I can learn something instead of constantly trying to teach/explain the disease would be a godsend! God bless you all. Together we can stop feeling like we're drifting and make some real headway in our immediate medical communities.
@A MySpondylitisTeam Member
Some random thoughts and ideas for you on finding resources and creating a support group...
I Googled "State of Virginia, Social Services". 2-1--1 VIRGINIA Popped up with links to a variety of services.
In Central Missouri the Central Missouri Community Action Agency covers 8 counties in it's Resource Guide.
Also in Missouri, United Way "Community Options and Resources" offers a resource directory.
My point is that where ever you live in the U.S. you can Google local or state "Resource Guides" to find listings of services in one place.
I also Google "Community Action Agencies" or "United Way" in the State or County I want info on. I've learned those two organizations provide social and provider services to middle and low-income individuals, families and seniors.
My work as a Clinical Gerontologist often involved locating caregiver resources for aging parents across the country with adult children in California. You have to enjoy the paper trail, otherwise it becomes tedious!
I think I understand what you are proposing; something like a phone buddy to people diagnosed with spondylitis who need more support than the "typical" website user.
Have you thought of a Conference Call Support Group? Every other week on a Tuesday or Wednesday at Noon (Pacific Time) members of your Support Group call a toll free number to link-up. You'll need to limit the number of people to less than 10 so everyone gets a chance to talk. Six to eight participants is a manageable number. Keep the call to 90 minutes. As the facilitator you can sign up with any free conference call service provider. Since everyone on this website has access to computer technology or cell phone you won't have to worry about that.
Hope these hints are helpful!
@A MySpondylitisTeam Member 2015 that would be great.I bet where you live (big enough of population) you could advertise and get people to join a group you start
The only places I’m able to find support/answers is this site and my FB group. I agree that having an in-person support group would be wonderful tho.
Thats the idea. I see people that get into a rut or are having continuous trouble I wish I could reach through my smart phone and hug them or get them some help. My energy level is as with everyone limited so going to see if existing programs can branch out. Time will tell.