So I have three things to update on. Spoiler alert, #3 is pretty darn cool.

 

1. Started seeing a physical therapist. The idea was to get in with someone who would know my condition every time I went in and be able to continuously work with me. I expressed to him the issues I was having with breathing and muscles. His ideas and stretches in just two sessions already seem to be making a difference. What is really interesting to me is that the shortness of breath sensation that I’ve been experiencing for two years now can be induced with one of his stretches. This is actually a good thing because we have had a hard time pinpointing whether the sensation was coming from the lungs, chest muscles, heart, some combination etc. I’m excited to see where this goes.
2. I’m back on a 30-day heart monitor due to the breathing ‘dives’ I’ve been experiencing. You wear it all day. It’s no fun. Nothing else to report there

 

Now the cool part. As I’ve stated before, the biggest quality of life hurdle by far has to do with my breathing and how difficult it is to contend with. This symptom started two and a half years ago. This past Saturday, I woke up and had an almost immediate ‘dive’, which has been pretty typical of waking up recently. I took a breathing treatment and tried to move around a bit by going to get the mail.

And then something happened that didn’t even really occur to me until later that night. I’ve been keeping a log of the severe breathing dives I’ve had since they started in March. I realized eventually that I hadn’t written anything. There were no dives. With the exception of just after waking up, it was the first time I essentially went a full day without one since being discharged from KU Med on March 28th.

And then something else dawned on me…I didn’t even have the underlying ‘regular’ breathing issues. I was taking deep breaths at will. There was no feeling of choking, no ‘breathing through a fog’. It felt so natural and normal that it felt foreign because I haven’t experienced it in so long. Almost overwhelming. By the time I went to bed, I realized that I had just experienced something I pray for constantly: a perfect breathing day. The last time I breathed so clearly? January 2014.

So what happened? Well, it could have just been a fluke…one of those days that just sort of happen in life and we don’t know why. Believe me when I say I spent half an hour tracing my steps…what time did I take my medicine and what were they? What did I eat in the last 24 hours? HOW did I eat? Did I sleep longer or shorter than normal?

The most exciting possibility…I am right at the projected date for the Rituxan infusions to start working. If that’s true, then it was a short preview because Sunday was pretty rough. Whatever the case, I found it interesting on a higher level that this weekend was the fifth anniversary of the Joplin, Missouri tornado that shifted my life course (that’s a story for another day).

As anyone with myositis knows, every day is about waking up and working with the hands that are dealt. Sometimes, you get a glimpse of perfection.