Saturday, February 15, 202011 am - 12:30 pm
Decatur First UMC (DFUMC)300 East Ponce de Leon Ave.Decatur, GA 30030
We meet in the Gathering Room on the first floor. Parking is on Commerce Ave. The disabled parking is right by the door to enter under the covered walkway. You don't have to take any steps; it's completely accessible. There is a code to enter the door, 9753#.
We meet the 3rd Saturday of most months from 11 am - 12:30 pm.
Dana Marton(404) email@example.com
I am a mom, a wife, a daughter, a belly dancer, a nurse, a blogger, a children’s ministries teacher, and a dance teacher. I have Psoriatic Arthritis with spinal involvement, Ankylosing Spondylitis, Sjogren’s, Fibromyalgia, Chronic Fatigue Syndrome, Hypermobility EDS, Avascular necrosis, Osteopenia, Osteoarthritis, Pseudotumor Cerebri, Endometriosis, Hypertension, and I am also being watched for Lupus.
I didn’t walk until I was over one year old. I started dancing at age 2 because my mom thought it would help build up my muscles and strength. I always had aches and pains, but doctors always thought it was because I danced and had growing pains.
My Avascular Necrosis (which is in my 6 large joints: hips, knees and shoulders) was likely caused by connective tissue involvement from the autoimmune/auto-inflammatory arthritis diseases. Because of the AVN, I have had my right shoulder and both hips replaced. I have had shingles 48 times, some very mild cases, and some more severe leading to nerve damage and post herpetic nerve pain.
I got married in 2000, and things kept getting worse for me. In 2002, I had core decompression on both hips. The right hip took; the left did not. I was in a wheelchair the following year and remained there for 6 months. I had a total hip replacement of the left hip in December 2003. I was 29 years old. I went from the wheelchair, to a walker, to a cane.
I didn’t understand why all my joints and muscles hurt so much if I had AVN in only my hips. I soon found out that I had AVN in my knees and shoulders as well. Then a rheumatologist said that I had to have something going on systemically if I had all these joints involved in AVN. I was diagnosed with sero-negative rheumatoid arthritis in 2003, and then sero-negative spondyloarthropathy. Then I was also diagnosed with Sjogren’s.
In 2006, I was finally diagnosed with fibromyalgia, after having excruciating muscle pain for all those years with no relief, and with psoriatic arthritis when I broke out with psoriasis from head to toe (and I also had a sausage digit indicative of psoriatic arthritis). My right shoulder collapsed the day before Halloween in 2009. I had it replaced on March 29th, 2010. I had my right hip replaced May 10th, 2012. It collapsed almost completely around the holidays.
I didn’t give up at all, though. I continued to belly dance. I even performed in a show in two different dances a few days before my surgery. I am so glad I did. It kept my spirits high. It kept my muscles strong, and it protected the area around the joint until the hip was replaced four days after our belly dance show.
I look forward to leading the Atlanta SAA Support Group! I hope that we can all help one another by sharing our stories, how we all cope, and listening to one another. I will stay vigilant with studying any new treatments and up-to-date therapies for the people who attend our support group meetings.
It has been a long road for me, and it will continue to be. I anticipate that I will continue to need more surgeries and that new procedures, treatments, medications, and possibly even diagnoses are in my future. The reason I wanted to share this with you is that we all have such incredible medical stories. We all have different stories, but we all seem to be more alike than different. I can’t wait to meet all the new faces at our next Atlanta meetings!
My name is Meloni Thompson; I am married to my high school sweetheart and I’m very lucky to have such a supportive man in my life! We have 2 beautiful daughters, with amazing husbands and we love our GRANDS!
My AS story is like a lot of women who get misdiagnosed or dismissed, even when multiple signs point to AS. I am HLA-B27 positive and have a younger brother with AS, who already had both hips replaced. We all know that AS is hereditary. When I left the doctor I was very upset and confused....You know that comment… “It’s very rare in women.” How could I be dismissed so quickly when so many signs were visible?! He missed it and at that time, I didn’t know much about AS. I learned quickly that I was the only advocate for me and I dug in to learn all I could for myself and my family.
I’m not sure when I first started having symptoms, but I do know that my first “arthritis-type” knee surgery was at 15 years old. I’ve always suffered from migraines, joint pain and light sensitivity, but in 2006 I really started having trouble. I was suffering from severe lower back pain, swollen ankles, wrists and fingers. My fingers and toes had the sausage look! My ankles were actually so swollen and painful that walking was very difficult. In 2009, I finally saw another rheumatologist who quickly diagnosed AS. It was a moment of relief, fear and sadness.
Controlling my AS has been a challenge. I sometimes think had I been given the correct diagnosis at the beginning this wouldn’t be the case. I stay on top of research and make sure I’m aware of the new medications that are available and have even suggested them. Pretty much anything that is AS approved, I’ve been on. I like to say that I have good days and bad days. I know some AS’ers call them flares, but for me it’s good days and bad. Calling it a flare would mean that sometimes it’s gone…well, that’s not happened at all. I wake daily with pain, it’s just that some days are worse than others.
As for this disease being hereditary, I’ve already mentioned my younger brother who is HLA-B27 positive and by the age of 24 already had both hips replaced. My youngest daughter started having random joint pain and we found out that she is HLA-B27 positive but currently showing no active AS (thank you, Lord).
As a group leader in the state of Georgia, USA, my hope is that we will be able to come together and share knowledge and our struggles with spondylitis. Through knowledge, education, and support we can live well with spondylitis and hope that one day there will be a cure!
I’m a face of AS and so is my family, but we will not let AS be in charge! I’m continually learning more and more about my body, my AS, and this disease.
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