A.S. Face 0243: Janet Vorwald

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

7 Responses to “A.S. Face 0243: Janet Vorwald”

  1. Hi Janet just read your story . think we are all the same with our G.P mine said the same that he does not know a lot about A.S & as for the doctors at the hospitals well I think they don`t believe you half the time when you say things are hurting you its a struggle for us at the momment I`m having so much trouble with my feet had x-rays my doctor said he cannot see any thing wrong so end of story but the feet are still giving me hell hope things don`t get to bad for you & wish you all the luck in the world . from Peter 0286.

  2. Hi Janet. I haven’t seen “my” opthamologist for 7 years now. I wonder if AS is the only thing that causes iritis-because “my” opthamologist wrote it down on a piece of paper right there after the exam. It was the “Aha” moment for a few doctors. I had to “dialate” my eyes with drops for a week, along with Pred of course. Walked around with one eye closed. For the first day, my “pupil” (little black spot) was “square”, cause it was “stuck” to the iris underneath. Weird. What did people do before “prednesdone”???

    Janet-I think your kids are learning a valuable “life lesson” in compassion and understanding. Because of your AS, I think they are going to be compassionate and understanding adults-and I can’t think of a better trait than that. Ya know, I used to “look down” on people who lived in run down trailer houses- and then, with AS, I realized that they were probably disabled with pain. Never again.

    Peter-have you tried the plastic “orthotics” the podiatrist molds to your feet. It helped mine tremendously.

  3. No Derek I`ve not but thank you I will look in to this you no over the years I`ve all ways said I never have trouble with my feet think I spoke to soon ther. only seen my doctor last week & told him how much trouble I was having well thanks Derek will ask about this you do think he would told me what could be done he`s a miserable so & so.

  4. Dear Janet,
    Thank you so much for sharing your story with us. I am so sorry about the loss of your sister. You have a wonderful attitude, all anyone can ever do is live your life to the best of your ability and to the fullest. Thank you so much.
    Sincerely Cookie

  5. Your children will remember and reflect on your strength. Thank you.

  6. I HAVE AN INVISIBLE DISEASE BUT I AM NOT INVISIBLE!
    i like thes one
    thank for you story

  7. Janet, if you see this would you mind sharing your doctor’s name please? I’m seeing one at IC hospital and I feel like she can’t remember what she told me the week before and doesn’t care about my pain or side effects at all, I’m very discouraged.

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