A.S. Face 0617: Michele Seiler

My name is Michele Seiler and I live in Lockport, NY. A small town East of one of the seven wonders of the world – Niagara Falls.

I am a face of AS. I started having lower dull back ache in my twenties. Doctors did x-rays and said maybe I had some arthritis. So I ignored it. As the years progressed the pain was always there and growing but I became “used” to it. I really complained for a good 10 years to my primary doctor in my 30’s, who suggested I lose weight, strengthen my core, do some physical therapy. I got relief most from Chiropractic care and about 800 mg of ibuprofen 3x/day. That went on for ten years.

As a single mom, my three kids and I started skiing… We had wonderful family memories. In 2008 I experienced a “pin prick” in my hip.  I thought I just hurt it skiing, but as two weeks went on, it kept quadrupling in pain and stiffness. I could not get out of a chair, walk, stand, move normal.  I was scared!! I ran to the doctor again.. Yep I had to demand bloodwork … The x-ray showed arthritis.. And the nurse, who informed me that I “only” had a bit of it suggested i just get used to it…( Her grandfather has it and is ok… Lol mind you i am about 39 yrs old) My demand for bloodwork was heard and what’s interesting is that at the same time my sister called saying she had tested positive for HLA-B27 but she thought the strange disease sounded like me -and what I had been complaining with my whole life … Couple days later the doctor called and said it was positive.  HLA-B27 positive and there was no doubting my symptoms… I couldn’t move!!!

I couldn’t pronounce the name, let alone explain it.. Or understand it. I just wanted the doctors to fix it.. They don’t tell you at the beginning to hang on for the ride ..  They just give you their rehearsed doctor answers… So I’m four years into AS diagnosis … I am having a difficult time finding a medicine that doesn’t give me a serious side effect .. Remicade and simpoini caused vasculities, oriencia and enbrel have caused major fatigue… The kind of fatigue where you can’t move, (three hours to shower … Or tires you just to sit… ) Due to the fatigue, I had two disabilities within a year with trying new meds.  This last time I just crashed…hung on the edge of the cliff of hell..(depression, anxiety… Yuk) I am happy, no thrilled, to say I have found my peace recently…(mourning my old self)  We are back to trying meds and I have my “fight” back.  I have decided to concentrate on my health.. I’m not totally stable but I am happy with the track I am on… And the unknown that lays ahead of me.   I’m a firm believer in the fact that when one door closes another one opens.

I try to talk about my disease more – I think I had too much denial early on and I felt if I ignored it, it might just go away .. Most people don’t know what I deal with daily and that fine… But just bringing some awareness to those around me as to why I am “not around” when Im not well is actually good.  It’s helps me that my friends understand…

I wish all AS patients .. Strength, patience, peace, happiness, and strong voice to never give up… And please get up and move .. Don’t let your couch be your life…

Remember when things are tough : “Things never stay the same forever”… :))

Enjoy that journey …

The stories and this site had been my only inspiration and light during the my darkest times this past year.  Reading the posts made me feel:
INSPIRED (the ones who are not letting their disease overtake them)
LUCKY (others have it worse )
A CONNECTION (I am not alone)
All I can say is that reading them has truly helped me… And have shown me a Light at the end of the tunnel…
Michele Seiler

New York United States of America

5 Responses to “A.S. Face 0617: Michele Seiler”

  1. Dear Michele,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Hi Michele,
    Thanks for sharing your story. I agree with what you say about denial and it being important to talk about AS and try to help people understand. I’ve had a long journey ( ten years at least) to diagnosis. It’s so frustrating, isn’t it? Good luck on your journey. Sari

  3. Thanks for sharing your story. Hope we can help with any questions you have. Elizabeth face 40

  4. And now your story will be an inspiration to others Michele!

  5. I think your so beautiful: ) 💛💙💜💚❤💚💜💙💛

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