Linda L. Jankowski

I flew with my brother to see U2 perform in Washington DC in Spring 2001. We stood for quite a few hours, because we scored General  Admission tickets on the floor. After we returned to California, I started experiencing lower back and groin pain, and I chalked it up to over doing it-the price to pay for an amazing concert weekend across country.

Weeks passed, and the lower back and groin pain persisted, and eventually got much worse. When driving to and from the office, I hoped beyond hope that the traffic light would stay green so I wouldn’t need to use my brake. Sitting was painful. Using my right leg to brake was even more painful.

I would make the Herculean attempt to run an errand, gather my items, see that the check out line was more than one or two people deep, and I would have to abandon my cart and go home empty handed. Standing was excruciating. The pain was not limited to my body. My psyche took a big hit.

I did my rounds with various back specialists. The last in the series ordered an MRI which detected mild spondylitis in my right sacroiliac. He said, “There is nothing wrong with you. You need to move around more”.  I was walking 4.7 miles a day!   I fired him and had the cry of my life. It was one of my lowest points.  My body was a prison.

I brushed myself off, and made an appointment with my family doctor and begged him to help me.He sent me to a Neurologist who actually sat down with me in his office and simply listened. He was kind, empathetic. He said he wanted to do some blood work.

It came back HLA-B27 positive. He gave me a pamphlet on Ankylosing Spondylitis and referred me to a rheumatologist, under whose most able care I have been ever since.
I have been on various treatments, but for the last 8 years or so I have been on Enbrel and Celebrex and I have enjoyed a high quality of life. The “White Noise” of my constant discomfort has turned off. My hope is renewed. Living with a flare up now and again is manageable. I have more “energy coupons” to redeem, and I decide how I want to use them.
I am now 53 years old, and this is some of what I have learned from having AS:
  • I can count on my family and friends.
  • A word of encouragement, sympathetic smile, a gentle touch of the hand, a
    hug, a moment to listen, can provide momentary comfort to someone who is
    hurting.
  • Just because a physician cannot find something wrong with you does not mean
    there is nothing wrong with you. Continue your search for a healthcare advocate.
  • Chronic pain is physically, mentally, emotionally and spiritually
    exhausting.
  • I am a kinder, more compassionate human.
                                             I wish for you an abundance of “good” days.  Namaste.
Mission Viejo California United States of America

3 Responses to “Linda L. Jankowski”

  1. First off, I love your beautiful eyes, they made me smile right as soon as I saw your picture. I also love the AS lessons you shared. Thank you so much for sharing your story with us. You are truly an inspiration.

  2. Thank you for your kindness, Diane 🙂

  3. Dear Linda,
    Thank you for sharing your story with us, I love the things you included about learning from AS. My goal is that everyone will learn from each of our stories.
    Sincerely Cookie

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