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

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 are 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 give 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.