SC - Columbia

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Arthritis Support Network launched: 2016

Arthritis Support Network Leader: Barbara              Type of Arthritis: Sjögren's Syndrome

About this Arthritis Support Network:  

My vision for this group is to connect with people living with arthritis and/or other rheumatic conditions for positive coping strategies and uplifting support. I want to provide a fun, affordable, relaxed, informative, and positive haven where people feel valued and at peace.

About: Barbara 

My name is Barbara. When I turned 30 years old I was "gifted" with a rheumatic condition called Sjögren's Syndrome. I didn't know what it was, and I work in healthcare! Only recently have I actually started to see literature calling this condition "Sjögren's Disease!" And it is a disease!

So this is progress people!

Anyhow, part of Sjögren's for a large majority of people is an elevated RF (rheumatoid factor) blood titer level. An elevated RF is most commonly associated with Rheumatoid Arthritis. Sjögren's is basically a crossover disease between RA and Lupus with some extra "fun stuff" (like all your moisture glands drying up) thrown on top. It's known for "dry eyes" and "dry mouth" but as anyone with connective tissue disease knows. ... Our whole bodies are affected!

So I'm in the chronic pain - Spoonie warrior fight with you. I've been through denial. I've been through despair, depression, and anxiety. I have a slew of specialists. I've done a great job at adding more autoimmune conditions to my medical history (Fibromyalgia is a nuisance..) and I'm here today with acceptance, optimism, and a strong desire to connect with others like me for education and support.

These conditions prepare us for this world in a unique way. They shape and mold us for a special purpose. My vision for this South Carolina-based group is to have a collection of patients and their loved ones connect and meet for positive support, encouragement and growth. I hope you'll join us.

Contact: 

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Meeting Location and Times: 

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Activities: 

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Comments

Deb Gevedon's picture
Submitted by Deb Gevedon on

I was diagnosed with Sero-negative RA 29 years ago. I have tried traditional medical treatment and found that it caused me more difficulties than it cured so I opted out. I am not bragging my any means nor recommending this path for anyone. Regular chiropractic care has been extremely instrumental in dealing with pain in my neck, back, shoulders, hips, and believe it or not, my hands and feet. It is a difficult life anyway you go at it.

I have learned over the years of the many overlapping conditions. I also suffer with Sojgrens symptoms. So far I have been able to comfort my dry eyes with Systane eye drops. I treat the dry mouth & inflammatory oral conditions with Oil of Oregano and Coconut Oil. I also gave up over the counter toothpaste and elect to use baking soda instead. Fibro symptoms also reared their ugly head over the past few years. I have managed to cope with the deep muscle pain with swimming, yoga, and callanetics. I have been told that I have GERD but was not given any information or instruction on what to do about it. I have found the elimation of dairy and breads to be very helpful with my digestive issues and Oil of Oregano has helped a great deal with the acid reflux.

September has been one long flare for me. I thought things were improving but this week it is my feet. My feet are very swollen and painful. My calves are even affected. I began wearing Danskos several years ago and that greatly diminished the problems with my feet. However, this week has been particularly painful. I am trying to stay off them but you know how that goes! You can't sit down all the time. 

I hope and pray that you find some relief. 

Deb in Kentucky

Arthritis Support Network Leader(s)

Barbara

Goals

Arthritis Support Networks provides personalized help and support to adults living with all types of arthritis and rheumatic conditions. Our programs offer opportunities for connection, education and empowerment via support groups and conferences.

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