A.S. Face 2147: Dr. Karen L. De Brine

 

I am the face of Ankylosing Spondylitis. I have Crohns. I have been struggling since I was 19 years old. I was diagnosed after my children were born ate age 26 and put on Methotrexate. At age 38 I got lymphoma and the stress of life and illness got the better of my personal relationship and ended my 20 year relationship with my husband. I continued to struggle with this awful disease and raise two incredible children. I have struggled with several different biologics, my last one was Humira which worked for a little while. I am currently trying to obtain Xeljans. I take Hydrocodone for pain. It sometimes doesn’t touch the pain, and some days I don’t need to take it. It takes me about 2 hrs minimum to get moving every morning. My good days my pain is a 5. My bad days I don’t get out of bed. I miss fun activities, bow out of mundane tasks because I don’t have the energy. My buttons are “On and Off” Don’t tell me to not do things because they will hurt me later because I might not ever get that chance to do that again, because sometime I feel like Death itself. I take steps and my hips, knees, pelvis, shoulders, ribs, spine, wrists, feel like they are going to break and turn to dust like The Dead King in GOT after Arya stabbed him. Some days I wish Arya would stab me, but then I think of all my warrior brothers and sisters. We come together in solidarity and help each other through this invisible disease that tends to baffle our doctors, loved ones. and employers. It is through our contact across the world that we know our symptoms are very real and similar and valid. Our bodies are attacking ourselves. There is no cure. We are many, and we will be heard.

I am hoping that by sharing my story it saves another AS sufferer from the dirty looks for using a handicapped parking sticker, or asking your boss or coworker for special consideration for a chair desk or to wear sneakers because of a debilitating autoimmune or inflammatory disease. Most of all to realize that young people get this disease. It does affect women; usually different then men in that typically women have more peripheral joints involved as well as eyes. Not everyone carries the HLAB-27 genetic marker. This is not always a disease that allows a person to “adapt to a normal life” all the time like Wikipedia says. We have some normal-ish stretches where we have taken enough medication and have adapted our lifestyle to APPEAR normal. AS warriors are the greatest adapters I know.

I am including some pictures of my AS life. I am 54 years old. Two pictures were selfies of me in considerable pain. On I was just driving home. Sitting in the car for 20 was agony.
Dr. Karen L. De Brine

New York, United States of America


2 Responses to “A.S. Face 2147: Dr. Karen L. De Brine”

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

  2. Sizzling hot!!!! Closest account of the way I feel !
    I have other bonus diseases that I have to also
    struggle thru everyday. Everybody’s different.
    Dr De Brine you nailed it with your story.
    See we don’t need people or Doctors who
    haven’t struggled like some of us
    or acquaintances to suggest “it will be alright “
    “You can’t possibly be in that much pain “.
    Finally a Dr I can relate to bc you truly have been
    struggling with this hell as I and many more have ,
    Every.Single.Day
    I don’t have my FACE out there yet Karen but
    I’m sending you a warm gentle hug from WI.
    Wish I lived closer to you ♥️
    audie

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