Ankylosing Spondylitis & the Authentic Truth: What’s Happening in my Home, My Heart & My Body By Jennifer

It’s funny how for weeks I can’t think of a thing to blog about, and then all at once, I am inspired to saturation-point.

Maybe it’s a new blog or two in my reader, a clean room in my house, new pages lengthening my manuscript, sunshine and how we soaked it in this week. Maybe it’s fresh lemonade with strawberries made by my handsome husband, or maybe it’s recognizing how tall and gangly my daughters are growing. Maybe it’s knowing more summer fun & memories are just around the corner, or knowing a new year of learning at home with my girls begins soon. {I find inspiration in the school supply aisle… always have.}

Whatever it is, I want to write about it but there’s so much to say, I don’t know where to begin.

Balanced with all the goodness I just wrote about is the underbelly of the coin — not so good, refreshing or inspiring. Things like doctor’s appointments, frustration & confusion, more tests looming, more vials of blood drawn, a house that I can’t seem to keep up with and how I have allowed that to stop me from inviting friends over for a playdate or tea party or dinner. There’s stressors — we all have them — and so many things to try to stay current with, and that has become very difficult.

I could tell you about several weeks ago when my feverish four year-old needed to be carried from one room to the next, and how due to a back flare-up, I had to ask her to walk while holding my hand. I could tell you how bad the pain in my spine was, and how I couldn’t bend to lift her, but it doesn’t compare to how sad my heart was when I couldn’t just scoop up my hot, miserable little girl and carry her.

I could tell you how my ribs and chest hurt so much that it’s painful for my children to cuddle too close to me. I could tell you, again, that I worry about my future with Ankylosing Spondylitis and especially about my mobility.

I could explain how exhausted I am and how difficult it is to get out of bed on a daily basis. How much I yearn to be present in my little girls’ lives and hearts and the guilt and sadness that can come when I can’t be the mommy I once was.

No, I can’t take you to the library today. I’m sorry, it hurts too much to have you on my lap right now. I wish I could bake cookies with you, sweet girl, but Mama can’t stand for that long right now.

My eyes are welling with tears, and this is how I know that this is the authentic truth.

The pain can be severe, but what is unbearable is what it does to our family sometimes.

I know I could tell you what chronic illness and pain gives me. And I will tell you about the gifts found in all of this in a future post.

 But for now, it’s okay to take a moment and just admit how much I hurt sometimes when my body can’t match my heart.

Bad day or good day, I thank you for coming along on my journey. I hope you find a kinship and truth here. I hope you leave inspired or hopeful. I count many of you among my dearest friends & family, my support system, cheerleaders, fellow AS journeyers, sisters of body and heart.

Thank you.

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11 Responses to “Ankylosing Spondylitis & the Authentic Truth: What’s Happening in my Home, My Heart & My Body By Jennifer”

  1. Brought me to tears. I am thankful many times my body doesn’t match my broken heart. Beautiful job.
    A.S. Awesome Spondies!

  2. Thank you, Cookie!!

  3. marygems said…
    Jennifer, I am new to your blog, but my heart has gone way across the seas from New Zealand to embrace yours[ ever so gently]. I will ask my fellow intercessors to pray for you. please feel free to email me when a day is particularly hard, and we will give you and extra burst of prayer, lifting you up to our wonderful Father,source of all mercy and compassion. What a hard journey- may you know the Lord’s love and peace in a very real way and may He be the source of your daily encouragement.We will pray for complete healing!
    mgemmillatxtradotcodotnz.

    August 7, 2011 1:20 AM

  4. Amanda said…
    Beautifully written Jennifer! You have a huge heart & it is truly inspiring! Your family is blessed to have you in their lives.- Amanda

  5. The Feeding Edge said…
    You are enough, just as you are. I pray the pain will ease for you. Acknowledging where you are is very hard but important for you and for others.

    I have found some ways for it to ease for me but I understand your feelings and experience because I too have felt the overwhelming weight of pain and fatigue of AS and the feelings of wondering – how can I continue to survive a life that looks like this never ending to the horizon.The days where there was no room in me but for the pain. I pray you can find some relief.

    Just know you are loved and you are enough exactly as you are.

    August 7, 2011 9:10 AM

  6. Thrive Out Loud said…
    Even though I know that our girls will be more resilient, more compassionate because of our AS, it doesn’t ease the (heart) pain. I know. Your post reminds me of the first snowfall of the season last year. My 3 year old wanted to play outside so bad. I could barely move that day (I hadn’t been diagnosed yet) and my baby was only 3 months old. I felt horrible as she stood at the window and watched all the other kids play outside.

    I do as much as I can, when I can, but on the days when the pain takes over all I can say is grace, grace, and more grace.

    Thank you for sharing your heart of hearts. For the times when our bodies our weak, I pray our words would be our strength.

    Thinking of you today…

    xoxo
    Kim

    August 7, 2011 3:33 PM

  7. Anonymous said…
    I’m sorry that it’s so hard, and I wish I could fix it. Thank you, Jenn, for sharing your journey with so many, including me. I’m honored to be your friend! Love, Wendy

    August 8, 2011 12:52 PM

  8. Sarah said…
    Thank you for sharing your story, Jenn. I appreciate your honesty, and for showing me how I need to be more appreciative of my body. Glad I found your blog 🙂 And you are in my thoughts.

    August 9, 2011 5:23 AM

  9. Elizabeth said…
    I understand and you are in my thoughts and prayers, my sweet new friend. Elizabeth

    August 9, 2011 11:40 AM

    Jennifer said…
    Thank you so much for these tender, sweet comments and words of encouragement. It is so amazing to put out such vulnerable feelings here and have your gentle hugs and understanding come from all around the world to minister to my heart.

    Thank you!

    August 9, 2011 11:59 PM

  10. Tanya said…
    Thank you so much for sharing! I have experienced these same feelings too. My children are a bit older now, but at times I still get down when I can’t do certain things with my kids and my son looks at me and says, “But why mom? I really want you to come.” I usually sneak away and cry, then compose myself and remind him how much I love hime and want to do those things, but can’t this time. Even though we don’t have the same illness I can still relate to many things. It makes it a bit more bearable to know others understand.

    August 10, 2011 1:59 PM

    Jennifer said…
    Thank you for leaving a comment, Tanya. I hope your illness is giving you a break right now.

    September 7, 2011 10:03 PM

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