Well, I was hoping for better but small improvements are better than none.

Coming to terms with the fact that this is as good as I’m going to get is hard. There was just too much damage done before we could stop the progress of my disease. So many things that complicate having any “meaningful recovery” that it doesn’t make sense to push for a lot of intense physical therapy. That is doctors saying that, not even insurance companies (and I can get a lot more covered than most people).

I will be starting a light pulmonary rehab program soon though to hopefully reduce my dependence on supplemental oxygen. Now it is about balancing my quality of life with treatments and not doing anything that risks injury or unnecessary fatigue. I get it and I agree but it just sucks we are at this point.

I am still grateful, though. This summer has been proof that I can still live a good life under these conditions. If nothing else I have learned through all of this, I know I am extremely adaptable. And I have so much support, so many people willing to go the extra mile so that I can still experience things as fully as possible.