Looking Back – Day 11

Today is Day 11 of the Art Apple A Day Retrospective – for information on the project click here.

Day Eleven – October 11, 2010

Looking back 10 years ago today…

I remember the worry about a small stomach bug that was hitting my family during my visit. People with autoimmune disease and especially people on biologic drugs that weaken our over active immune systems know that even a small stomach bug can escalate quickly. So I was concerned and tried not to worry about what might happen and just enjoy the small amount of time I had to visit with my niece and nephew before getting on a plane home to Colorado. The years of being so sick take a toll and leave deeply embedded trauma. Those pesky what if’s started in my mind once again.

  • What if I flare?
  • What if I don’t have the right medication with me if I do flare?
  • How would I get those meds if I needed them? [this also leads to time spent thinking about those possible scenarios]
  • What if I have to spend the rest of my vacation in bed?
  • What if…. what if….. what if…

Guess what? The bug passed and we had a great day making cookies together! All that worry.

Shifting to today in 2020 I wish I had known then what I know now. That worry is actually part of the issue. It’s part of a very complex puzzle. If A.S. were a puzzle it would be one of those gigantic room sized puzzles. Have you seen those?

Yes… spondylitis is a puzzle like this one and I was determined to piece all together. I think 10 years ago I was maybe a quarter of the way there. Today I’d say I’m 3/4 there and I’m so proud of that and most of that progress started just in the last year believe it or not – I’ve been taken by surprise by this! Please don’t think there can’t be continued progress even if there hasn’t been much of any in a few years. Things change, new information comes available, a new physician can open up new possibilities.

Piece by piece, with determination things can get better. Some of that happens because you find treatment that helps, some is from all the small things you incorporate into your life to find your own unique balance point, and some is because you just get used it it. {this is hard to hear when you are first diagnosed but it does come in time}

I say my puzzle is only 3/4 the way done because there is no way to predict the future. I could go from my current state of remission to back to where I was 20 years ago where I was basically bed ridden and there is no rhyme of reason what might set that in motion. And there are some whose puzzle is much larger and more complex then mine and they might stay and 10% “figured out” their whole lives. I don’t want to discourage anyone but it is the unfortunate honest truth.

So I live for today and give thanks for the good moments and I stay focused on the things I can do that I have found that help me stay in this “remission” as long as possible because I know I’m extremely fortunate – which is why I try to talk about this disease – to help raise awareness of this complexity.

I hope everyone with health issues can find the pieces of their unique puzzle and put it together in a way that gives them as much joy and life as possible. My heart aches for all who suffer from any horrible painful disease or cancer or difficulty. I am in awe of the strength of the human spirit to hang on and endure.

Much love,

To see my original eleventh post from 10 years ago click here or on the image above.

And the story will continue tomorrow…

Side Note: You will notice if you follow along day to day that as time progresses my apples and the post topic often start to relate. Today I wrote about the puzzle of A.S. – inspired by the image. On day 11 in 2010 I hadn’t really made those connections yet. I find this interesting upon reflecting today. xO

2 Replies to “Looking Back – Day 11”

  1. I’m thinking we won’t get the 14 foot long puzzle. Maybe in another 10 years. Wonderful memories though (although memories of a stomach bug aren’t, you know, wonderful.)

  2. I have a difficult enough time with my dang neck when we do a 500 piece puzzle at a table. No way I’m doing a puzzle on the floor! We’ll put Sofia and Claire onto it once they hit high school! Ooohh… a Day Four puzzle would be awesome! Love you sweetie, thanks for being a part of this with me – the first time for sure – doing it a second time means we’re both nuts!

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