I was diagnosed with Undifferentiated Spondyloarthropathy in 1997. I have since been diagnosed with Ankylosing Spondylitis, though I have no fusing. I have had treatment since my twenties, so either I am still in the undifferentiated column, or the treatment has worked to prevent fusing. On this page, I will share my experiences. I hope that something that I have gone through and the things I have learned along the way might benefit someone.
The first time I missed school because I couldn’t turn my head, I was 7 years old. I had many times that A.S. was affecting me when I look back now, knowing; long before I was sick enough to be diagnosed. That’s the problem, you have to get very sick to end up diagnosed. I had a doctor who once told me it was good I wasn’t diagnosed back then because the only therapy was a steroid, and he said, “they would have made you short and fat, and you would have died young.”
Jesus is the reason I am sustained through it all. He holds me and loves me and it is enough. There is no suffering that He has not already overcome, and one day I will too. He holds me through it all… THROUGH IT ALL. I have a sister who also has A.S. It is terrible, and wonderful to share this with her; terrible because I long for her to be well, and wonderful, because we have been there for each other and we both truly KNOW…
My life is filled with much joy. I have joy in my husband who is always loving and kind, and in my children, and now grandchildren. That is now. It has not always been that way.
The joint repair has begun. I have had two, wrist and shoulder. I have had chronic panuveitis and scleritis that won’t adequately respond to treatment. I keep pushing on. Because of the threat to my vision and the eyes themselves, I have tried many different treatments. In Fall of 2018, I ended up in the hospital with pneumonia and sepsis so I am not doing immunomodulators right now.
In 2019, I had my lenes replaced and an Ahmed valve implanted in both eyes. We are preparing for an intravitreal steroid releasing device.
I have a great family and a very active, albeit twisted, sense of humor. We Laugh A LOT!