I’m a big sports fan and I have to say that I often find myself watching games and thinking to myself ‘I would give anything to be able to run down that track, field or court at full speed like that just once without harming myself’.

I’ve noted before that of all the side effects and problems that have arisen since getting diagnosed, by absolute far the biggest factor to the change in my quality of life is the ability to breathe. Pain, weakness, vision problems, everything else can be dealt with. When you can’t take a deep breath, that is a completely different type of animal. 

I am getting ready for the final infusion of Rituxan this Friday, number four of four. If it is going to help the current flare, I still have a few weeks to start feeling the effects. Unfortunately, the last few weeks have been rough. This may be due to the extra fluids I’ve been taking in from IV meds, in addition to the meds I had while an inpatient at KU Med. It could be from the meds themselves that I was taking. I’ve been having trouble with breathing, an issue that has caused some pretty bad episodes in the last couple of weeks.

It’s hard to tell the culprit because there are always so many moving parts. What makes it more difficult is that the issue/symptom is always there, and it wasn’t well understood before. I’m working with my primary doctor and my pulmonologist this week in order to find some solutions, but in the meantime my CPAP mask has been a good friend to get a deep breath. I’m trying to limit movement and relax/de-stress as much as possible, but life happens. Things will be back to baseline soon, weathering the storm is a part of this game.

Take a deep breath and remember not to take it for granted.