A.S. Face 0248: Audrey Largent

Hi, my name is Audrey Largent and this is my journey with Ankylosing Spondylitis.

I am 53 & I feel I have so much to offer but AS has robbed me of most of life’s pleasures, hobbies & joys.  The most difficult part is watching the look of utter hopelessness and helplessness from my family & their inability to cope with what I am now no longer able to do. Loneliness, suffering in silence, trying to decipher what is actually wrong with a particular part of my anatomy at a particular part in time is as excruciating as the physical pain that AS brings.

AS has attacked my internal organs, vessels, ligaments, muscles, heart, lungs, intestines, and mostly my spine. I’ve had 2 Cervical fusions (C5-6-7 & C4-5), with C1-2-3, as well as the Thoracic area showing damage already.  I’ve also had a Lumbar fusion (L4-5) & my SI joints are damaged & inflamed, giving me an added pain bonus down my legs.  My shoulders are damaged.  My chest wall/ribcage swells so that it makes it difficult to breathe because my organs are constricted. I can’t stand for more than a few minutes.  I’ve had a DVT (Deep Vein Thrombosis) & PE (Pulmonary Embolism) & have been hospitalized 4 times in the last 1 ½ years.  My asthma is in constant flare & I don’t need to tell you what all these meds & inflammation have done to my stomach, liver & intestines.  I have not been without pain for as long as I can remember.  I live in pain 24/7 & haven’t had a good night sleep in years.  I have had serious & life threatening reactions to most of the medications that are used to treat the autoimmune diseases.  All I can take is prednisone & a few pain medications.  My life is a constant juggle of medical appointments, tests, trying to work, run a household, be a wife & mother & trying to keep it all together without falling apart. The fatigue is overwhelming.  My head (when not in a fog) still thinks that my body can still do what it used to be able to do and I get so frustrated & angry of being unable to do all the things I used to love to do.  My daily focus is trying to figure out how I will make it through the day & “when can I go lay down because I am so exhausted!”  I used to be outgoing, energetic, physically able to walk & exercise.  Now, I humble myself  & sheepishly ask the ones I love, to do things I SHOULD be able to do myself & I feel humiliated to do so.  Ankylosing Spondylitis is a whole body & life experience.  It consumes you & eats away at your dignity one little piece at a time. It is an invisible disease & people judge you harshly because they are unable to see the internal damage that you suffer.  “Why is she parked in the Handicap section? She can walk?”  “There is nothing that exercise won’t cure out of you!”  “You should be able to pick up the pace & do these things.  There’s nothing wrong with you!”  These are some of the comments I face daily while trying to cope with a debilitating disease that robs me of the joys of living.  But each morning, I awake & I take the challenge of living by the horns & say “AS, you will not beat me! I am still alive, I still exist, I still matter!  I will not give up!”  This is my story & I’m sticking to it!  J

This is a little poem I quickly wrote yesterday & I thought I’d share:

Pills, pills, pills,

Down the pike they go!

Spills, spills, spills,

My hands won’t have a go!

Doc, Doc, Doc,

Where is my magic cure?

Talk, talk, talk,

What a bunch of manure!

Bones, bones, bones,

Take me where I wanna go!

Groans, groans, groans,

No way, my lady, no!

Pills, pills, pills,

Down the pike they go!

Ills, ills, ills,

Would rather do-si-do!

Hastings, Florida United States of America


27 Responses to “A.S. Face 0248: Audrey Largent”

  1. Dear Audrey,
    Thank you so much for sharing your story with us. I love your attitude and LOVE your poem! It is amazing!

    Sincerely Cookie

  2. Loved your poem!

  3. Please know while we suffer with this horrible disease there are countless people working to find a bit of ‘hope’ for us. this keeps me going.
    Much love!

  4. Hello Audrey,

    I can totally feel your pain. You know better than to ask: what’s next? What else is going to head South? Each day seems to bring a new surprise, although you may have seen it coming or heard the warnings. Your body feels trashed & the meds are poison; what choice do we have but to pick our poisons carefully? The breathing issues combined with fused cervical vertebrae & ribcage are terrifying. My fog is a drug & fatigue induced trance that never goes away. Rest is impossible & I can’t remember when I felt good. It’s as if I’m in denial… I’m a stranger in a dysfunctional body that I can no longer recognize. You feel literally robbed of life’s blessings that brought joy to your heart. Even the simplest tasks are major challenges; no one understands the personal HELL that you are experiencing. You pray for the inner strength to make it one day at a time.

    Try to keep your life simple; stress is a killer. Pace yourself; your plate is already full. Take good care of YOU! Never give up; tomorrow just might be a better day. GOD Bless you!

    Warmest regards,

    John

  5. Thank you so much John for the kind words. I DO know how you feel. Some days are better than others & I enjoy the better ones like a miser with its gold. I was just diagnosed again with another DVT & possibly another PE. I see a new rheumy on Tuesday & I am hoping for additional autoimmune diagnosis that would at least explain some of the quirkyness I am experiencing.

    Take care of yourself as well.

    Aud

  6. Hi Audrey,

    You and I go way back, my dear friend….well over 20 years but whose counting. I know your strengths, your straight forward convictions. I know your “in your face” honesty, your consistant faith in God and your sassy spirit. I also know the softer side of you, the vulnerable Audrey. I have felt helpless as you reach out for comfort and understanding in the face of pain and dissapointment. You and I have been through husbands, watched each others kids grow up, and faced disease and family tragedies together over the years. Keep up the good fight, share it with the world and know that you are supported by me in all you do. God bless!!!

    Love you,
    Terry

    • Ter… made me cry… I know you’ve always been there for me & I am so thankful! Thanks for being such a good friend. Love ya!

      Aud

  7. Hi Audrey,
    Life is not fair and uncertain much of the time. Miracles still happen and nothing would give me more happiness than to hear from you that you have achieved one. You are frequently in my thoughts and prayers. I love you, Girlfriend.
    Sylvia

    • Dearest Sylvia,

      You of all people can sympathize with me…. I know your end hasn’t been easy either. I am waiting for my miracle. Keep reminding me because sometimes I forget that it’s coming…

      Love,

      Aud

  8. Know that your story makes me stronger Audrey.
    …. suffering produces endurance, endurance produces character, character produces hope, and hope does not disappoint us because God’s love has been poured into our hearts through the Holy Spirit..
    You have a wonderfull friend in Terry.

    • Thanks Derek! Your words do speak the truth. The Holy Spirit is the only thing, at this point, that I think is holding me together & giving me the Wisdom & Courage to keep fighting.
      And yes, Terry is the best! 🙂

      Sending the Healing Power & Flowing Fire your way!

      Aud

  9. Dear Audrey, love, best wishes and big big hugs from a fellow AS sufferer. Louise (Face 246)

    • Hi Louise #246! 🙂 Feel free to contact me if you want to talk. Big big hugs back at you! It’s not an easy thing to deal with…. 😦

  10. wow, that is so much to deal with–so much pain. I’m sorry for all you’ve have to deal with on a daily basis. hugs Elizabeth (face 40)

    • Thank you Elizabeth! I read your story & you’re one tough cookie! But I know you can relate & am sending you (((pain-free internet hugs))). AS is usually more prevalent in males. Your 2 sons have it. so sorry…. I wonder if anyone has done a survey on this site to see what the male to female ratio is of the people that are submitted their story. Just curious to see if it hold true to what the medical community says… Hang in there & the best of luck to your family!

  11. Hi Audrey,
    I loved your poem. I can surely relate to what you say about people judging because we look normal on the outside. I get looks all the time, dirty ones, for parking in the handi cap parking. It is soo frustrating….listening to the snide remarks behind me…talking about how I don’t need it….blah blah blah. It is soooo iritating. I’ve had a permanent handicap plaque now for years and I have some better days than others and most of the time I wont use the handicap places if I can find a near non spot i will use it. But those few cases when I really NEED it and can’t find a close spot so I use it and THEN I get people saying something about it….just really bugs me to no end. I love your spunk!! Thanks for sharing your story.
    ((hugs))
    Marti (face 199)

    • Marti… Thanks for reading my story. 🙂 I read yours too! It’s amazing how many of us go through the same thing! I share your pain & frustrations. Maybe, each of us & all of us together, we can change the world & really make a difference in bringing awareness for a cure for this nasty disease.

      ((hugs back))

      Aud (face 248)

  12. Hi Audrey

    From one Aud to another, you are in my thoughts – we will all fight this together. Stay strong girl!

    Love your poem.

    Aud x

    • Hi Aud!! Not many people out there with that name. 🙂 I’ve never seen another use that short version of it either. Too funny! Gotta have the same disease to find someone just like me!

      Hang in there!

      Aud

  13. DEAR AUDREY,

    YOU HAVE MY PRAYERS AND SUPPORT. THANKS FOR SHARING YOUR STORY.

    HOPE YOU GET TO A HEALING MINISTRY SERVICE. TRY FRANCIS MCNUTT IN JAX. HE IS CATHOLIC AND HAS A WONDERFUL MINISTRY THERE. GO ONLINE.

    • Father Rene! It is so nice to hear from you! Made my day! 🙂 Thanks for the suggestions! But I’ve been to the McNutts 4 times as well as Fr. Jose’s Healing Services numerous times. Even went to some non-Catholic Charismatic conferences (Oh-No – LOL) and Catholic Charismatic Healing services too (oodles of time)! When the Good Lord decides to heal me, it will be on His own Time, Terms & Will. But I’m still holding for Hope! Some days, that it the only thing that keeps me going & together! Keep in touch!

      Blessings!

      Aud

  14. Dear Audrey –

    Leaugey sent your AS site to me and as I read your story, I, too, can identify with the daily effort to keep going. And, boy are you an example for all of us!!!We do suffer in silence most of the time because we are so afraid of overwhelming our family and friends. But, you should know, and always remind yourself, that those of us who care about what is happening to you continually hold you in our hearts and prayers. I’ll pray that you have more and more of those “good” days to hold on to, and that God continues to lay his hands on you to comfort and ease your pain.

    Rita Gallegos

  15. Audrey,
    I happen to stumble across some AS links within Facebook, which has finally led me here. I am 45 diagnosed with AS in 2006, symptoms since early childhood.
    I do not even know where to begin. I have lost/been robbed of so much of my life with AS. I’ve lost custody of my son (now 14), lost job, home, my father, and even relationships with some of my family members because they just “can’t deal with me being a hypocondriac”, because there’s always something wrong.
    *Spinal fusion
    *Knee surgeries
    *Thumb, wrist, & many other surgeries

    I’m lost for words at the moment, due to being in the brain fog of exhaustion, yet excitement for finally connecting with people out here. I cannot sit any longer, and need to get back to my homework, but please please please, stay connected with me – feel free to connect with me, as I will dedicate the rest of my life to helping bring awareness for this disease.
    candyce.sindelir@gmail.com
    ((hugs))

    Candyce Sindelir

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