A.S. Face 0320: Patricia Edgley

Hello my name is Patricia, and I suffer from AS.
This disease has taken over mine and my son’s life entirely…I would never wish this on anybody, not even my worst enemy.  It is an insidious condition which on a daily basis is ever changing…leaving me often times just utterly exasperated and exhausted.  That being said, I have vowed to not allow this disease to rule my life any longer…I am taking back my life, and it starts now!  So here I am everyone!
I don’t want to write about my daily struggles, nor talk about how I found out I had this disease at the moment…maybe one day down the road I will.  I don’t want to place my energies on that right now, I want to look ahead…towards a brighter future.
I find the majority of us sufferers have the same symptoms and struggles, and have the same stories as to how long it took to get a firm diagnosis…and how we all had/have to deal with doctors, family, employers and friends who have no idea what this illness does to a person;  mind, body, and soul, nor what it does to their families and finances.  It is so destructive, and it’s so easy to fall into the rut of feeling helpless…worthless…alone.
I have lost a lot because of this disease…and many people have walked out of my life in the beginning because things like this makes them uneasy and they can’t cope…others I have let go of because their attitudes were not conducive to me having a positive support system around me.  Either way, I am happy they had a role to play in my life (bad and good) and I have now learned from it.  I choose to look forward with much hope and faith that I can come to a happy medium with AS…I know I will have my bad days, however I’m determined to have a lot more good days through educating myself, proper diet, exercise and forgiveness to those who don’t understand, and especially of myself, for acknowledging that this is not my fault and I did nothing to bring this disease into my life.
There’s a new peace in my soul now.  I have accepted the fact that I have AS, but I have also accepted the fact that I will not let it define me as a person…I am more than just a person with AS, I am a fighter who will not stop fighting to get some of my old life and vitality back.
And to all my AS brothers and sisters out there…I’m sending gentle hugs and prayers for more painless days ahead.
Thank you for listening,
Patricia Edgley
Hamilton, Ontario, Canada

20 Responses to “A.S. Face 0320: Patricia Edgley”

  1. We will fight this together!!


  2. love your story, you are a positive woman with a positive mind

    • Thank you Cathy, not always positive but trying my best so this disease doesn’t control me any longer 🙂

  3. I wish you luck Patricia in hoping you keep finding the strengh to fight your A.S & thanks for sending the hug from Peter 0286

  4. Hey friend,thank you for sharing!! U always remind me to keep my chin up and keep fighting!!! Thank you for all ur support! Means alot to have a friend like you! Hope to one day meet you!!!

    • Don’t forget the support you’ve given me girl, I never met you but I found a connection between us. There are many reasons people come into our lives and yours was to help me in my journey with AS, and vice versa darling…and I’m glad if once in a while I can make you feel better when you’ve had a rough day. You deserve the support, you deserve the kindness and you deserve to know you are loved and liked Jenn…after what you and your mother have gone through with this horrible disease, you have plenty to offer other AS sufferers, and I for one am grateful that you’re in my world…sista!

  5. Couldn’t have said this better Patricia! Thank you!

    Louise (246)

  6. GOD Bless you, Patricia! Keep fighting this thing called AS. If only others could walk in your shoes for just one day, only then would they realize the struggle to even accomplish what most folks would consider the simple things in life.


    • God bless you John! I guess we have our work cut out for us to educate others about this disease. I myself never even heard about AS until I was told I had it…that was 3 years ago :/

  7. “Theres a new peace in my soul now…” love that line. Damn straight. If you can do it, then so can I !! Thanks Patty (I can call you Patty can’t I?)

    • I’m glad you like it Derek, it’s truly how I feel now. I don’t quite know what did it, other than to tell you that I was annoying myself with all my whining and complaining on a daily basis, and thought to myself this has got to stop! I need to take my life back instead of putting everything on hold…my family, my friends, my goals, hobbies and dreams.
      I needed to stop complaining and feeling sorry for myself because the more I thought like that, the more I became it…no way! I won’t do that! I’m thinking in a whole different way now, even if I’m at my worst, I still won’t give an inch to this disease…it’s stolen enough of my time, it will not take the rest of my days. Good luck Derek and may you have more healthy days ahead of you 🙂

  8. Dear Patricia,
    Thank you so much for sharing your story with us. You are exactly what the quote I chose for Faces of AS is about.

    When something bad happens, you have three choices:
    You can either let it define you, you let it destroy you, or you can let it strengthen you.

    I made a choice a long time ago, to always look for the beautiful andpositive things in my life, makes life for me more meaningful. Sincerely Cookie

    • You are a beautiful person Cookie, without you, our faces and stories wouldn’t be known…thank you for all that you do 🙂

      From the bottom of my heart,


      • Patricia, Thank you so much for your kind words. I couldn’t do it with out all of you!
        Thank you from the bottom of my heart.

        Sincerely Cookie

  9. Thank You so much for sharing your story Patricia. Your story has made a strong connection with me. Even though I have been recently diagnosed I have been suffering from AS for years. I’m a single mom of a 6 year old son. And all I want is to live my life happy with him. And I can NOT let this disease take over my life and stop me from doing the things that I love. Thank You again for sharing.

    • Hi Kerry, I can relate to raising a boy by yourself, since that’s my story too. I never had the type of support that is much needed in that situation…I hope you do. Raising a child alone is not easy but doing it with AS, is an even bigger challenge that no one without this disease can relate to. Please don’t hesitate to friend request me on FB if you ever need a friend and a shoulder to lean on…I know your pain, I know your journey and I know your strength to endure. Take care luv 🙂

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