My name is Janet Vorwald. I am 39 years old and live in Iowa.
I was working as a cake decorator when I can remember my first real flare up (there may have been more before that but I didn’t pay much attention). It was during the busy graduation season and I just thought it was from all of the bending over. I went to the chiropractor for a long time with no relief. He said my hips were out of whack. I went to my family doctor and got no where. I couldn’t sleep for more than a few hours at a time because of the back pain. It was easier to walk around in the middle of the night. Thought it was the mattress so we got a new one – that wasn’t it either.
In 2000 I got pregnant with my second child. The back pain went away. After giving birth it came back. I had an MRI and ultrasound that showed nothing. Went to physical therapy with no relief. I just dealt with the pain for a few years. Then one day my eye became very sensitive to light and touch. I went to the doctor and was diagnosed with iritis (uveitis). He asked if I had arthritis. Sayin no, he sent me to my family doctor who ordered a blood test. That coming back positive I was sent to a rhuemetologist and diagnosed with Ankylosing Spondylitis. What a whirlwind few months that was. Insurance wouldn’t cover Remicade yet and then had to wait for them to approve Enbrel. Once on Enbrel I felt great. Yet, I didn’t feel comfortable with my rheumatologist. He made me feel like a was ‘just another patient’, which I am but he made me feel stupid for asking questions and didn’t explain things well. Hello, I was just diagnosed with a lifelong illness, help me out a litlle. I learned more from my own research than him. I talked to my family doctor and it was tough but she got me switched to another rhuematologist in the same office. I am still with him, I have had my family doctor for 16 years, my eye doctor for 12 years, and dermatologist for 5 years. They have been wonderful (sometimes frustrating) with helping me and this disease. My eye doctor admitted he didn’t know a lot about arthritis and AS and has sent me to another doctor. I’m thankful he was honest about it. But throughout the years he has learned more, I’d like to think I had a part in that.
After having several long bouts with iritis I was switched to Humira. (I have had iritis once in 4 years) I have had a bout with plantar fasciaitis, a bulging disc, constant swelling, hip pain, weight gain, and most of all fatigue. The pain in my back is minimal. It is the peripheal joints that bother me most.
I go to work every day, have been married to my wonderful husband for 18 years, and am raising two wonderful boys – 15 and 11. They have seen my ups and downs and understand when I have to take a nap. I just hate for them to look back amd say ‘oh ya my mom slept a lot!’ I hope I have and will continue to educate them enough. They have both done a science paper on AS which has helped all of us understand the disease even more. The technology world is wonderful. I have learned so much and although I don’t know anyone personally with AS I feel like I have have a lot of friends through the ASAP Chat Group. I like to go for walks, read, decorate cakes (although that is getting harder and harder to do), and go camping.
It’s not just the back pain, it can effect so many other parts of the body that I didn’t realize. One piece of advice to everyone is listen to your body. If something doesn’t seem right, seek help.
Stay positive ( even though it is hard sometimes) and live life to the fullest. I lost a sister due to alcoholism and I would much rather fight what I am going through than to have the demons she had to fight. There will be bad days but there will also be good days.
I HAVE AN INVISIBLE DISEASE BUT I AM NOT INVISIBLE!
I MAY HAVE ARTHRITIS BUT ARTHRITIS DOESN’T HAVE ME!
ALTHOUGH I MAY HAVE TO ALTER IT A BIT – I AM GOING TO LIVE MY LIFE TO THE FULLEST!
Iowa United States of America