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!