Now I Know By Cookie

The subject for our weekly topic is “symptoms.”

Simple enough, Right?

Then why am I on the verge of tears?

Why have I been working on this blog for a week and still can’t find the words I need? I keep getting stuck in a whirlwind of emotions.

I don’t know how to begin….

I don’t know where to start….

I don’t know what to say….

Do I just list the symptoms I’ve had or have?

Do I share the symptoms I’ve never confided to anyone?

Do I share the times I was in a life or death situation because I assumed my symptoms were “just” Ankylosing Spondylitits?

Do I tell how many times I’ve repeated my symptoms over and over; STILL no one listens, maybe they do, but no one HEARS ME?

Do I tell about the doctors who told me my symptoms made no sense, it must all be in my head?

Do I tell about the doctors who “seen”  my symptoms, but had no idea how to help me?

Do I tell about the doctors who acknowledged my symptoms, suggesting that I learn to live with it?

Do I tell about the doctors who were appalled by the symptoms I suffered from but judged me when I was unable to “deal with it?”

Do I tell about the doctor who abandoned me when I needed her the most?

Dr. A was my doctor during my young adulthood. She was a wonderful and kind lady; I felt that I would be her patient till my life ended or hers. I was her patient for twenty-three years and when it became apparent that my “symptoms” (Ankylosing Spondylistis) was going to change my life drastically and challenge her medical knowledge. She decided to do something.

I went in for a visit and was struggling with pneumonia, she sat across from me the same way she had for twenty-three years and said…… I can no longer be your physician. I can not deal with the challenges I (her) will have to face.

I just want to finish my career quietly, and smoothly. I don’t want the responsibility and work that it would require of me to be your physician. What Ankylosing Spondylitis hadn’t managed to destroy of me, she did in that fifteen minute conversation. I told her that I didn’t get this disease on purpose to make her life hard. I told her that I would pray every day for her to be in my shoes at this very moment one time in her life.

Do I share I was forever changed as a human being that day?

Do I confess that nine years later I’m still cautious when sharing my symptoms for fear of being abandoned?

Did you know I can’t tell you which symptoms I have are from Ankylosing Spondylitis or not?

Did you know that my Ankylosing Spondylitis doctor can’t tell me that either?

Did you know that the most devastating symptom I have from Ankylosing Spondylitis is a broken heart?

Did you know fear  is the hardest symptom of Ankylosing Spondylitis I deal with?

Do I share that I asked my family to list the cause of death on my headstone as Ankylosing Spondylitis, because I still want to raise awareness after I am gone?

Now I know why I was in tears. I still feel the pain, shame, hurt, and devastation of every single symptom I ever had and tried to share.

Did you know that it took thirty-two years of tears, begging, screaming and pleading for someone to finally realize I had Ankylosing Spondylitis?

Now I know why writing these blogs is important to me,

because as long as we continue to keep our selves unheard,

Ankylosing Spondylitis will continue to be an invisible disease.

Dedicated to The ASer’s

Who Walked Before Be

Who Walk Beside Me

Who Will Walk After Me.


17 Responses to “Now I Know By Cookie”

  1. God damn it Cookie!! I have been struggling with this one too and yet again you write exactly how I feel – and I need a tissue!!

    Fantastic – you have caught exactly the hardest part, in my opinion, the aloneness, the abandonment, and as for that doctor, she should be ashamed to call herself a doctor, she is a disgrace.

    Jackie Aitchison 7:46am Sep 12

    • Thank you sweet Jackie. I find it shocking that this topic turned out to be the most painful and hard one I have written. I had attempted to write it several times and until today I had no clue what I was going to do. I thought this would be the first topic I would postpone. It took me through a lifetime of pain, anger, hurt, and devastation in less than twenty-four hours. It took a toll on my emotions and I have kept tissues close at hand all day. Thank you for taking the time to read my work. Thank you for always being honest in your response. Thank you for your kind words. Thank you for encouraging me. Thank you for being my friend. Thank you for being one of the greatest Blessings Ankylosing Spondylitis has given me.

  2. I walk beside you my friend, I think many of us deal with naive doctors, or doctors who don’t know how to care, how to react, how to fix things. I have struggled with this, with doctors my entire life. Did you know that doctor used to really mean a learned friend who would care for you in your time of need? We’ll be your doctors, after all , support , love and under standing is what we all need more than anything else in this world. You are stronger than you think.
    Hang in there

    • Lindsay, what a beautiful statement to wake up to. That has to be one of the most touching replies I have ever seen or been blessed with.
      I agree it is about walking beside each other and being there for people. Thank you for making a difficult blog worth the tears it took to write it. Blessings to you.

  3. Catherine Tidman Says:

    Wow! You’ve seen my soul! Our Lindsay is so right…we will be your understanding,your comfort,your “gentle” hugs when you need them,and we will NEVER leave you alone to suffer in silence!! EVER!!Shame on that doctor for the abandonment.If nothing else,she was at least honest that she “wouldn’t” help you and gave you no real reason other than a selfish one.Be glad she is the past.We are here for you,all the way. And,your story rings true for so many of us,it could actually be my story,too.”Gentle” hugs,my friend<3 ❤

    • Thank you so much Catherine, seems the hardest one for me to write has touched people the most. I appreciate your kind words along with everyone elses. Knowing I am never alone and have people who understand makes my life so much richer and easier. Gentle hugs to you my friend. Thank you all for taking the time to read my post and being kind enough to remark about it. Much blessings to you all.

  4. Cookie, this is one of the most powerful posts on AS I have ever read. Thank you for being real. There are so many of us who walk beside you, and because of the awareness this “generation” of AS-ers is raising and the stories we are telling, the ones who walk behind us will have a bit of an easier time.

    • Jennifer,
      Thank you so much for that saying that…Cookie, this is one of the most powerful posts on AS I have ever read. Coming from an author, well what can I say. I honestly thought this topic would be generic, but it turned out to be the most emotional one for me to write and to be honest one of the most healing. I was able to put a life time of hurt in this blog and touched some by doing so. Thank you for your kind words they mean the world to me.

  5. Fiona wrote: “I just read this… I do not have AS but I could have written it myself anyway because of all the separate conditions I have which do not apparently add up to any one diagnosis (well not as far as I know). The loneliness and the constant struggle with different symptoms, never knowing from day to day or even hour to hour how I will be so never being able to plan anything have taken so much from me. Juggling the medications and having no-one to talk it all over with (apart from on-line), being treated like a freak or neurotic, not being believed (not so much now I have some things properly diagnosed) and still having some embarrassing symptoms that I have never shared is profoundly isolating. I am lucky, I still manage to get out a bit and have ok days and I am so grateful for that. Some of us are set huge challenges every minute of every day that just go unseen. I am very grateful to have got to know Jackie because I no longer feel quite so alone! Thank you for sharing Cookie xxx”

  6. Jackie wrote: “I put Cookies blog on my page as I thought it would be appreciated by others outside of the group, plus it is just a great blog!!”

  7. Fiona wrote: “It is, I really wanted to cry all the way through it even though she doesn’t mention a single actual symptom… It really does help to share this stuff xxx”

  8. Jackie wrote: “You should look sometime in our group, and look up the blog page, Masquerade of Words”

  9. Fiona, Thank you so much for taking the time to read my blog and for your kind words. It means a lot to me and all of us who struggle to write and share our stories. Today has been a very healing one for me. I thought the “symptoms” blog would be a generic pain in the AS. Turns out that it healed a lot of sadness I carried.

    Jackie, what can I say girl but love you!

  10. Tabitca Cope posted on your Wall.
    “I thought your blog on symptoms was fantastic. well done! It must have taken a lot to write it xx”

  11. Cookie…Now that brings tears to my eyes and joy to my heart. I did struggle on what to write about. Then when I just not “think” and let my emotions take over the key board I find the words I need to say. Thank you so much for the compliment, what… a great accomplishment for me, especially coming from a published author. I wasn’t going to do any blog writting but did so to show my support to Kelly and her War on Ankylosing Spondylitis, turned out to be the most healing for Ankylosing Spondylitis I ever did. Blessings to you can’t wait for that second book! Thank you Tabitca.

  12. Tabitca It brought tears to my eyes reading it. I don’t have AS but have lung disease and I recognised so much of my own journey through illness in what you had written. I think you are very brave *hug* xx

  13. Cookie … Thank you, I was so flustered with it that I decided I was going to skip “symptoms” but When i typed I dont even know how to begin and walked away, it came to me.

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