Day 234 – Hold Your Head Up High

Art Apple - Day Two Hundred Thirty FourI will keep going.

Some days – heck, lots of days we all want to quit. We want to just throw in the towel and say, “That’s it – I give up!”

Life with a chronic illness makes these times seem like they are our existence more than they are a passing emotion. I struggle with trying to talk about my disease and the topics that surround it. I have an enormous desire to not let AS become my identity. I refuse to let that happen actually.

That might seem odd to people since I have made it a personal crusade to tell the world about spondyloarthritis in all its forms but health activism is what I do – it isn’t who I am. Some days I know that I will feel exposed, naked, vulnerable because what I do demands that I show you my life. And when I feel like giving up I’ll remember that who I am is a wife, a step-mom, an artist, a friend, a gardener, a lover of color and laughter – a human being – so I will make decisions the best way I can. I promise to keep going … to hold my head up high.

Until tomorrow.


Day 234 was created in mixed media.

I thank goodness for the outlet I have with my art – it allows me to express in a personally powerful way.

8 Replies to “Day 234 – Hold Your Head Up High”

  1. On the button as usual Jenna, I have started getting involved more and more with trying to share information, get conversations going, open up perhaps the leass talked about aspects of chronic illness and already I have found that it is in danger of smothering me. I found it did start to feel like AS was me and I was AS, perhaps because I cant work any longer, but then I took myself in hand and tried to think what else I could do completely away from AS, so I started my other blog. It is important to remember that you have talents and interests so you balance, as far as you can, your time. But like with all things As related, once you have been beaten down, you kick it is the ass and climb back up again. xxx

    1. Hi Jackie,
      I think it happens to all of us sometimes. I’m just learning to try to recognize when it becomes too much and pull back a bit. The emotions of thinking about the pain and illness all the time is far too great – the cost too high. I am again looking for that balance point like I wrote about on Fight Like A Girl Club. Fortunately I have people close to me to help me recognize when it becomes too much – and I refocus on the positives and joys of life in general.

      I’m so glad you started a blog for your book reviews – something you love that has nothing to do with AS! Yay! That will add so much dimension and happiness to your life – and I can’t wait to read the next review.

      xox Jenna

  2. I don’t think you will ever let AS become your identity Jenna. You are too inspiring, positive and creative to let anything like that happen!

    I too consider myself a health activist (well I strive to do wonderful things like you are!). Since I have been sharing my story, helping others with Arthritis and volunteering my time with Arthritis Victoria, I feel even more like I have my own identity. It has cemented in my mind what I am meant to do, who I am supposed to be. Arthritis is just something I have, it isn’t ME, yet I believe it has played a significant role in making me stronger person. So I think the more you do with AS awareness will only make you stronger too 🙂

    Naomi x

    1. Naomi,
      Bless you. Thank you so very much for such lovely words. You’ve been with me from the start of this journey – what a fascinating trip its been so far – huh?

      I agree with you – our advocacy makes us stronger. If we stand up to it and look it in the eye, our disease loses it’s power.

      You are an amazing and giving friend.


  3. When I first think of you, besides your name, I think of your amazing artistic talent, then your website, then AS. I hope it is of some comfort for you to know that others don’t feel like it has become your identity. *hugs*

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