My name is Jeannine but most call me Nini. I was diagnosed with AS almost 2 years ago. I had spinal surgery in 2011 to remove C5&6 and a fusion. The fusion did not take right away and it took 15 months to heal. I don’t think I healed completely because I starting having severe pain issues. I went through pain management, neurology and finally a rheumatologist. I struggled for years and than I was diagnosed with gastroparesis. I was in the hospital 6 times in 2014 and 2 times admitted for over a week. It wasn’t until my gastro issues and a change of drs and my rheumo doctor doing a ton of blood work that I was finally diagnosed and being treated properly. I am on Fentynl patches, Vicodin, sulfasalizine, savella (fibromyalgia), neurontin, 3 blood pressure meds and Effexor. I m currently now also on Humira injections.
AS has caused me so much grief. I ended up having to stop working. I’ve been in the medical field for many years. It took almost 21/2 years and I was approved for disability. I was always a very active person always on the go. Even the easiest task is a struggle for me today. I also suffer from depression due to the drastic changes. I’m on a few groups on Facebook and like seeing and feeling I am not alone with this disease. I’ve grown to bless any good days and roll with the bad ones at this point. I was always a fighter but felt like I was fighting a losing battle. Your encouraging words and those of others have been helpful. AS awareness needs to be spread and people need to be more educated especially to the fact that it is an invisible disease and at times we don’t appear to be as sick as we are. I would also love to wear a bracelet in support of all of us who are dealing with AS.
New York, United States of America