A.S. Face 0409: Chrisy Bresnan

My AS story begins 30 years ago at the age of 10.  My knee was the first to flare up and the biggest problem I faced for the next 6 years.  My neck/back involvement originated at age 16 following a car accident in which I suffered whiplash.  So began the physical therapy visits that would continue on and off for years to come.  Yet I never recovered from my injury.

When I was 18, my orthopedist decided knee surgery was my best option so he completed a lateral release – a procedure my rheumatologist believes made my problem worse.  All the while, my neck pain and stiffness were increasing and severely limiting my range of motion.

My first year in college, I found it difficult to sit through classes because I was having pain and discomfort in my rib cage.  It was bothersome to the point where I was skipping class because I was too uncomfortable.  I visited my GP who was smart and caring enough to send me to a rheumatologist for a consult.

X-rays on my first rheumy visit confirmed c-spine fusion.  Blood test confirmed I was positive for HLA-B27.  I was a female diagnosed with AS in 1991 at the age of 19.  At the time, I had no idea the ramifications of this diagnosis and was blissfully unaware of the complications that could confront me in the future.  Or my family – some of whom have since been stricken with the same horrible fate.  My father and sister were both diagnosed with spondylitis.  My aunt shows signs.  A distant cousin.  What about the next generation?

Over the past 20 years, I’ve had more steroid injections than I can remember.  Fluid drained too many times from too many places.  More therapy.  Another knee surgery.  X-rays.  MRIs.  My sacroiliac joints are gone.  I have bone spurs on my hips.  Costochondritis.  A rotator cuff tear.  Achilles tendonitis.  Low back pain.  Constant neck pain (who says fusing makes the pain go away?!). Swelling in my elbows, hands, knees, eyes.  Did I mention the incredible fatigue???  The intermittent nausea???  Depression???  Anxiety???

I’ve also been on more medications than I can remember. NSAIDs.  COX-2 inhibitors.  Biologics.  Chemo-drugs?!?  Steroids.  Opiates.  By far, Enbrel worked best of all.  I was an early-adopter of the drug and took it successfully for many years.  Remicade/methotrexate didn’t work for me, but Enbrel was magical stuff – until the recurring infections began.

My immune system got to the point where after just two injections I ended up with a respiratory infection that would knock me out for at least a week.  Not just a cold, but a full blown knock-you-on-your-butt infection.  Once I recovered and restarted injections, the next infection would set in.  It was a vicious cycle that I had to break by discontinuing Enbrel.  While working 50+ hours a week was incredibly difficult in pain, it was not possible if I was too sick to get out of bed.  I can usually push myself through the pain and the fatigue – though some days I’m not sure how.

After 30 years of living with this disease, I’ve learned a few things.

  1. I’m always sure to sit on the “right” side of someone to carry on a normal conversation since I can’t turn my head to the left.  I also can’t easily look at the sky nor at times see my feet.  But hey, if I can’t see/touch my feet, that just means I’m entitled to more pedicures, right?
  2. Checking my blind spots while driving is almost impossible.  Good mirrors strategically placed are a godsend.  So are backup cameras!
  3. If I don’t sit with my spine straight, my neck will become “stuck” in a forward flexed position that is difficult to get out of and makes swallowing without choking almost impossible.
  4. Fashionable shoes take a backseat to comfortable ones when I’m hurting.
  5. Good music at loud volumes can be incredibly therapeutic.  The harder the better.  Ozzy anyone?  Metallica?  Pantera?  Just no headbanging – that’s counterproductive…
  6. Yoga helps!  Take a class geared towards people with back problems.
  7. A great mattress and supportive pillow are worth their weight in gold.  While highly unlikely to make you pain free during the night, they will certainly allow you to sleep more than you otherwise might (so does taking Vicodin before bed!).  Pillows between your knees and arms are helpful as well.  Forget about sleeping on your stomach if your neck is fused – you can’t breathe with your face buried in the mattress!
  8. I no longer describe AS as “spinal arthritis” because people do not take it seriously.  Many are quick to counter with their own “back” problems that are certainly worse than mine.  For some they are.  But for most – I doubt it.  I can handle lots of things but ignorance isn’t one of them.  (Speaking of ignorance, I once had a doctor laugh at me when I told him I have AS.  He then asked who diagnosed me and quickly changed his tune when I gave him my rheumy’s name.)
  9. That which does not kill you WILL make you stronger.  Most people don’t realize how strong I am – but I do.  And I remind myself all the time when I feel lousy.  So does my incredibly supportive husband.
  10. There is no greater gift than the love of your family.  My son and husband truly keep me going.  Even when I feel absolutely miserable, they can still make me smile.
  11. Enjoy the “good” days because sometimes they are few and far between.
  12. I may not beat AS, but it definitely won’t beat me.

I am fearful of what the future holds.  I was stable for many years, but my condition is certainly deteriorating.  I worry about supporting my family, finding health insurance if I ultimately end up on permanent disability (which I will fight with everything I have in me!), being mobile enough to travel to places I’ve always wanted to see, growing old enough to meet my grandchildren and so much more.

Some days I become overwhelmed.  I can’t remember what it’s like to live without daily pain! But most days I am able to remind myself that I am much luckier than a lot of people.  I will rise to this challenge as I always have.  This is my life, and I choose to live it to the fullest.

Chrisy Bresnan

Maryland, United States of America

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24 Responses to “A.S. Face 0409: Chrisy Bresnan”

  1. wow Chrisy, I appreciate you detailing your experiences. My daughter is only 9 and has been diagnosed with polyarticular idiopathic arthritis with undifferentiated spondyloarthritis. I just know it is AS, but cannot be determined until further damage shows on her spine, which takes time. I thank you because it is so hard to truly understand what she is going thru, as she looks “normal” on the outside, so people like you who share their pain helps me better parent my young daughter who is only just begining this painful journey. I’m so sorry for your suffering.

    • Thanks, Michelle! I’m happy you found my story helpful in some way. I’m sure it is very difficult watching your daughter go through so much. She’s lucky you are trying so hard to better understand and find ways to help her. Please reach out to me through Facebook if you or she ever has questions. I’m happy to help in any way I can.

  2. Man. I’m telling you. The ladies of AS are the bravest of all.
    I’m glad you have someone to make you smile 🙂

    • Thanks, Derek! You are so supportive of all your fellow ASer’s, and it is very much appreciated! By the way, your comments always make me smile as well… 🙂

  3. Thank you Chrisy, my dear and beautiful sister, for sharing your story to help raise awareness of this terrible disease that has attacked our family. Love you!!! Fight on! You have AS, but it does not have you! Xo

    • Thanks, Lisa! I’m sorry you are having to learn about my pain firsthand, but I’m always here for you and certainly know how you’re feeling. Stand tall and stay strong! I love you!!! XOXO

  4. I love this! I too sit on the side needed to not bend my neck and looking up? Nope. The “stuck” feeling is what my Rhmey says she “doesn’t get”.
    Thank you for sharing! Sending healing.

    • My rheumy doesn’t get the stuck thing either. Glad to hear I’m not the only one!!! Sending healing to you as well. Glad you enjoyed my story.

  5. Keep fighting !

  6. Dear Chrisy,
    Thank you very much for sharing your story with us. Such an inspirational and moving story. I choose to life my life to the fullest to the best of my ability, also. Thank you.
    Sincerely Cookie

    • Thanks, Cookie! You are an inspiration to all of us. You have given so much of yourself to everyone. It is such an amazing gesture, and it has done so much for each and every one of us who have become a Face of AS. You have done so much to raise awareness and for that, I will be forever grateful!!!

      • Dear Chrisy
        Thank you so much for your kind words. It has been a labor of love doing this site. I will be forever grateful to all of you who have helped me to make Faces of AS successful! Thank you so much.

  7. Chrisy,
    Thank you for sharing your story. To say I didn’t cry and feel so much sadness for you would be a lie, but I am so proud of your perservance and strength. You are truly an inspiration and I so glad I know you. You are beautiful inside and out and the love you have for yourself and your family is priceless. You will prevail and beat this illness because, like you said you are truly blessed with a wonderful family and they need you. GOD BLESS!

    Love,
    Dawn

    • Thanks, Dawn!!! I appreciate your comments more than you know. You are such an amazing person and an incredible friend. My family is so fortunate to have you in our lives! Thank you for all your support and please know that I am so very grateful!!! XOXO

  8. I can relate to so much of what you wrote (#8, yep!) If we do end up on permanent disability, the one good thing is we won’t have to worry about health insurance anymore since we would be covered by Medicare.

    • Thanks for the good news! Sorry to hear you can relate to the ignorance. Hopefully sites like this one will bring greater awareness to others. Those who do not live with this dreadful disease will never fully understand. Glad we can all give support to one another.

  9. We love you Chrisy! And we are so sorry for what you are enduring. But, you are sooo strong and brave!! Love, Mom and Dad!!

    • Thanks, Mom and Dad!!! While I didn’t mention it in my story, you have always been incredibly supportive of me and it means so much more than you know! Dad – I’m sorry you have to live with the same pain, but I’m glad we can all be here for one another. You’ve both helped me to have strength, and I thank you. I love you very much!!!

  10. Hi Chrisy – Had NO idea. Knew you were the most wonderful Wife, Mother, Sister, Daughter and daughter-in-law. Now I know you have so much to deal with and realize that you are so much more than I ever knew. Prayers and SO very much love .Enjoyed the day with Chris and the ever amazing Devin. Love ya. Mom B

    • Thanks, Mom! I really appreciate your wonderful comments!!! I try very hard to put on a happy face – which is easy to do in your company! I’m glad to hear that what I’m feeling on the inside is not as obvious on the outside. I would much rather people think of me as a bright light than a dark shadow. Thank you for shaping my husband into the incredibly supportive man that he is – he takes such good care of me! Love you – XOXO

  11. Christy, I think we might have met once. I am a friend of your Mother. She would often speak of you and when she did we saw the pain and helplessness in her voice. Your experiences are overwhelming to comprehend when someone, such as I, have aches and pains that no where near compare to your daily struggle. Your Mom’s a great lady. She has given me strength in the past. I can see she’s passed it on to you also. Your message will be an inspiration to others. Nancy G.

    • Thanks so much for your kindness, Nancy! My Mom has taught me to be strong – and she’s also passed along some Abruzzese stubborness!!! Both have helped me with my struggles. I hope you are right that my story will inspire others, and I would be thrilled if it helps someone to find their own strength. I am grateful that my Mother has such wonderful friends. Thanks again!!!

  12. Christy – You don’t know me but our lives and experiences are very similar. At age seven was misdiagnosed with juvenile rheumatoid arthritis. It only involved my right knee until I was fourteen, at which point it affected my left knee. By my late teens-early twenties it spread like wild fire. I wasn’t properly diagnosed with AS until my mid-twenties. I have been on Enbrel for well over 15 years now, and thankful haven’t suffered any of its side effects. I have suffered joint destruction, leading to have both knees and hips replaced and my ankles fused. I have lost my sight in my right eye and I have limited mobility in my lower spine, neck, ribs and jaw. One more unpleasant symptom of AS is osteoporosis. I have broken more bones than I can count. I like you live my life to the fullest. I have a supportive husband and daughter, family and friends. They often jokes that God gave me AS to slow me down. I’ve always figured out how to do things my way (which may not always look pretty). I guess I just wanted to thank you for sharing your story. You see I sit here seven weeks out of a surgically repairs tibia fracture facing yet another surgery to repair my hip socket. I have been sidelined on and off over the last eight years with fractures, hip revisions, eye surgeries ect… And to tell you the truth, it was finally getting to me. Then I read your “power points” and it reminded me that I’m so much stronger than this disease! So THANK YOU. Debbie B. – Michigan

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