Where Are They?

AS is like many other incurable diseases, it manifests differently, can be mild, or can be incapacitating. I have tried to find other blogs, but the people are either very well and stronger than I am, or they just..disappear. One had liver problems and other issues that were getting worse and she just..disappeared. One’s blog did have a conclusion- when she died due to her ribs not expanding and her not being able fight off an infection.

We lost an eight AS patient this year.

And I can understand what can go wrong.

I can’t do this particular exercise. Well, there are a few I can’t do. But this one is scary impossible. It’s like there’s a huge weight standing on my shoulders and back pushing my arms down. They are bent and I can’t breathe and I can only stay up for about 6 seconds before running out of air and energy.

I wish I could describe how scary that is. Does that mean my back has fused? Does that mean I’m going to end up with a hunchback and this is just the beginning of my body not going in the direction I am trying to move it to? Or will I have the ‘privilege’ of at least remaining ramrod straight?

I did the shoulder extensions after the failed back stretch, and then tried lunging. I couldn’t. I lost my breath after five steps. That’s two one side, and three on the other leg. And then I could not breathe.

It reminded me of yesterday morning. Before going to church, I recorded a Bible story segment and the nature story for the children to watch in my absence. I went out to pick two flowers, and became breathless. Just.from.picking.two.small.flowers.

Something is very wrong and I don’t know if it’s enough to know I have atelectasis (partially collapsed lungs) that seem to have caused fibrosis in one lung. It seems extreme all of a sudden. Or is it a symptom of the extreme exhaustion that comes with AS? Do your lungs also feel too tired to work?

I really don’t know. It’s just worrying when you see your outside not behaving, and you feel your inside also not behaving. I don’t know where I will be when my blog comes to an end. I am hopeful that it won’t be an abrupt end after noting that my organs are in trouble. I hope against hope that this will all get sorted and that it will improve.

As I plan to go get my kidney function looked at and a colonoscopy done…