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Arthritis Support Network launched: 2017
Arthritis Support Network Leader: Shelley Type of Arthritis: Rheumatoid Arthritis
Arthritis Support Network Leader: Stacie Type of Arthritis: Rheumatoid Arthritis, Osteoarthritis
About this Arthritis Support Network:
Our vision for the Tampa Bay FL Arthritis Support Network is to be a resource for arthritis education, information and social interaction. It will be a support system for those affected by arthritis as well as caretakers, family members and friends. We would collaborate with each other to build a support group that is patient-centered and seen as a welcoming family for others to join. We would recruit others with arthritis that can learn from each other and provide information to share from within our support group and from community members we seek to broaden our knowledge and ideas about topics like nutrition, exercise, devices to make daily life easier, and advocacy. We plan to host meetings once a month at a convenient location with scheduled speakers and fun social activities. Input from all participants is strongly encouraged as this is everyone's support group!! As we grow in membership, we foresee having multiple groups to accommodate for location needs and we’d love to see Arthritis Support Networks in the four quadrants of the Tampa Bay area but we'll take it one step at a time!
My name is Shelley and I’m excited about starting up an Arthritis Support Network in the Tampa, Florida area. I’m the mother of a teenager and a college student. My husband, Rob, is my rock. We live with two very strange cats and a highly energetic rescue dog named Apollo. After years of symptoms and visits to specialists, I was diagnosed with Rheumatoid Arthritis and Celiac Disease almost simultaneously at the age of 42. Two autoimmune diseases out of nowhere turned my world upside down. It was a bit of a relief to get a diagnosis though and to begin to understand why my body was attacking itself causing me daily inflammation and pain. I started reaching out through social media and website searches for any information that could help me better understand what was happening with my body and what my future might hold. I was scared. I felt alone and misunderstood by family and friends who suggested I use this oil or ingest this herb to make my pain go away. How could I be so young to get arthritis? How quickly would my RA progress and would medication work? Did I have to stop teaching children? At the time, I didn’t know much at all about arthritis. Within weeks I had far too much information and I was overwhelmed at the possible treatments and lifestyle changes I had to make. I wish I had a support group to go to then. My rheumatologist suggested I visit the Arthritis Foundation website along with several other websites, and it was through those searches that I found networks of people I could relate to and who would help me enormously along my journey.
Finding the Arthritis Support Network has changed my life. This family is comprised of so many amazing people, each with a story to tell that helps to see arthritis with new lenses. It has been six since my diagnosis and I have continued to work full-time teaching adults and elementary children, but it has not been smooth sailing. I have needed to reach out frequently to others for support and to figure out how to best manage family and work with fatigue and pain. All of these changes I’ve gone through have impacted my family along the way and it has made us more aware of each other’s needs.
I would like to lead a group because in the first years of the onset of my disease I had trouble letting others jump in to help me. I thought I was supposed to do it all and it was very difficult for me to let go. I know there are other people living and maybe struggling with arthritis in my area of Tampa Bay. While social media is great, having a local group to share with and to learn from would encourage face-to-face connections among us. I’d like to bring people together who have forms of arthritis to share what we’ve learned to help us make life easier and bring in speakers who can offer insight. A support group is needed here. We are a large, diverse area and I am confident that there are many people with insight to share to benefit others.
My name is Stacie and I am a retired Middle School Administrator and Language Arts teacher. My RA was diagnosed over 5 years ago and because of the health challenges associated with the disease, I chose to retire early. When one chapter ended in my life, another began. I am a Patient Ambassador for the VectraDA and now an Arthritis Support Network Leader for the Arthritis Foundation and I hope to fulfill the vision of not just surviving with arthritis but thriving!
When I was first diagnosed, I was frightened and confused. I knew nothing about the disease or what was about to happen. No one prepares you for the feeling of isolation. Not knowing where to turn, I began to educate myself using resources available. The Arthritis Foundation was my main resource. It was during an infusion appointment that fellow patients began discussing the idea of having a support group that would provide education and social activities for the arthritis patient and their caretakers. One did not exist in the area and on an informal basis, we decided that we would have our own "support group" during our common infusion time. It is so important to be able to speak with others who truly understand what it means to have a chronic illness. It was during those times that I did not feel alone. If I felt that way, then alot of others would certainly feel that way. I am excited to be joining Shelley and to grow the group!
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