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”

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.

Diane Scribe Niiganii said this on October 25, 2011 at 2:12 pm | Reply
Thank you for your kindness, Diane 🙂

Linda L. Jankowski said this on October 27, 2011 at 3:43 am | Reply
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

Cookie Has AS said this on November 7, 2011 at 4:33 pm | Reply

Our Stories

© Cookie Hopper and The Faces of Ankylosing Spondylitis , 2011. There is an implied agreement and permission granted to Cookie Hopper and the Faces of Ankylosing Spondylitis that the participants photo/story will be used only in order to raise awareness for Ankylosing Spondylitis. There will be no monetary value gained by either party. The Faces of Ankylosing Spondylitis agrees to uphold the integrity and honor of each individual’s story when doing projects to raise awareness, and will be a mutual agreement of both parties involved. Once a photo & bio are submitted to Faces of Ankylosing Spondylitis ( Cookie Hopper) , heretofore known as "Faces," the individual submitting to Faces gives permission for Faces or its representatives or organizations coordinating with or whose services are retained by Faces or the invisible illness or Ankylosing Spondylitis community to use the image/likeness, name, & your bio or portions of bio as written, from the moment of submission, for as long as Faces exists as a website and/or organization. All submissions become the property of Faces, and upon submitting, participants grant full rights to the submitted images & bios to Faces, and the right to use & name in connection to activities of Faces, from now into eternity, in all forms of media, including new media, and agree that they are the property of Faces from submission until dissolution of the organization." Once included the removal will not be possible due to being number, but every possible action will be made to change any information if you feel the need for it to be. Unauthorized use and/or duplication of this material without expressed and written permission from this blog’s author and writer of the individual story is strictly prohibited and legal recourse may be taken in the event of this happening. Excerpts and links may be used, provided that full and clear credit is given to [Cookie Hopper] [individual author of the story] [The Faces of Ankylosing Spondylitis] with appropriate and specific direction to the original content. COPYRIGHT and TRADEMARK NOTICE ©2012. There are underlying copyright interests in the various works of authorship associated with this the faces of ankylosing spondylitis. These copyright and trademark interests may not be reproduced and redistributed, with or without alteration in whole or in part, unless prior written permission provided by Cookie Hopper of Alvin, Texas US 77511, along with the individual author of the story. Trademark name “The Faces of Ankylosing Spondylitis” and " I Am The Face Of Ankylosing Spondylitis" name has been approved and acquired by Cookie Hopper February 10, 2012. Others wishing to use this name or logo are hereby requested to contact the owner Cookie Hopper to discuss their interest before doing so. The Faces of Ankylosing Spondylitis Trademark number is 40671 The stories submitted may not be used without the original author’s permission, along with Cookie Hopper, which you may acquire by submitting a request to Cookiehasas@aol.com. The phrase I am the face of ankylosing spondylitis and the phrase the faces of ankylosing spondylitis are protected under the copy right and trademark laws. By submitting your photo & bio to Faces of Ankylosing Spondylitis (Cookie Hopper) you enter into a legal and binding agreement on both parties side. Cookie Hopper agrees there will be no selling of the stories or monetary value gained. Cookie Hopper agrees to uphold the integrity and honor of each individual’s story when doing projects to raise awareness, and will be a mutual agreement of both parties involved. This site is protected under the Trademark and Copy right laws. 40671 as of January 2012.

%d bloggers like this:

The Faces Of Ankylosing Spondylitis