Arthritis Support Network launched: 2018
Arthritis Support Network Leader: Jarett Type of Arthritis: Ankylosing Spondylitis & Chronic Pain Syndrome
About this Arthritis Support Network:
My vision for this Arthritis Support Network is to:
1) Expand on resources available to the serviced community, access to them and include those providers in support network meetings.
2) Increase educational opportunities concerning healthy living, medications (traditional/holistic/alternative), therapies, procedures and quality of life for those with any rheumatic condition, including guides and resources for their friends and family to aid throughout life.
3) Grow a supportive community that spans from Venice, FL to Naples, FL that can assist one another through monthly meetings, gatherings and meet-ups for educational, recreational and communal assistive needs towards the goals and values of the support group.
4) Be an example for other Support Networks to look to for guidance, direction, and assistance when needed.
5) Lead by example, not just talk the talk. What we say and learn in the group we put into practice in our lives showing there is better living through the knowledge gained through the group becoming champions over arthritis.
I was diagnosed with Ankylosing Spondylitis shortly before my 21st Birthday. It had gone undiagnosed for well over 11 years at that point and probably prior to that. at age 5 I was diagnosed with 'Growing Pains'; At 13, ' Chronic Fatigue Syndrome'. I truly had a chip on my shoulder with the medical community for decades for not just the lack of 'proper diagnosis', but also the 'irresponsibility' of the medications they just threw at me. Ten years ago, I finally had enough of it. I had been living in Vermont for almost five years at that point and had moved to 'the big city' of Burlington. There I was able to walk to most of my doctor's appointments and utilize the college's library. After noticing just how bad a 'Biologic' agent my rheumatologist had me on for over three years, I finally told my Primary care doctor, "Enough is enough. the 'medication train' ends today."
I was fortunate. He was a reasonable man and all of my doctors, for the most part, all worked for the same hospital, finally switching over to electronic records. I had a team of care professionals working for my health and well-being. Though they all didn't agree on how to proceed all the time, the final say eventually came down to me. They all knew I had been researching my illness, the medications I had been on and was returning to school to obtain my Master of Education, in some cases working with their bosses/colleagues doing research on where they differed on how to treat my condition in addition to State lawmakers. I was not going to be denied proper medical care, treatment or the 'correct' medication.
It's taken time, but writing my thesis on Ankylosing Spondylitis and Chronic pain and implementing the steps and care from my Vermont physicians truly has saved my life. I moved to Florida as part of my health concerns to implement those changes and to assist my family. After an adjustment period, finding similar doctors to those in Vermont, physical therapists, and aquatic facilities, and the right community of positive individuals, I have to say I believe I'm well on my way to wholeness and wish to share my knowledge with others through all I do.
Feel free to post questions to the Facebook page when it gets up and running and be on the lookout for the first meeting, hopefully coming up by mid-summer '18. Thanks all.
I am leading an Arthritis Support Network in my area because many 'believe' the South Sarasota to Naples are is 'very seasonal'. As an ASN Leader, I would prove that notion incorrect, that there is, in fact, a large population within two to three major geographic 'hubs' that are in need of support services and the Arthritis Foundation's presence year round. Venice to Port Charlotte is one of these areas. The Fort Myers/Cape Coral area is another and finally, the Naples/Bonita Springs is the third. Combined, this area of Southwest Florida has a great percentage of individuals with arthritis, more so than other areas of the Country, yet it is undeserved. Individuals travel North to Tampa or East to Miami for 'proper' medical attention and support services for arthritis. As an ASN Leader, I want to show people where the right doctors and support services are in the area as well as increase the awareness that arthritis is a big hurdle for individuals living their daily lives in this region.
To join this Arthritis Support Network, please click on the "Join this Group” button above and we will send you updates about upcoming events via email.
Head over to the Calendar of Events to RSVP your attendance.
Complete details with location and times will be posted on this website and cross-promoted to our Arthritis Support Network – North Port, FL Facebook Page. Please like and follow us!
All group participants agree to adhere to the Support Group Participant Guidelines.