A more cheerful update

Last week, I was pretty grumpy and annoyed and scared and uncomfortable. This is a rather toxic combination, and it resulted in anything but the cheerful little cherub that I usually am. ;)  So I am working on swinging back in the other direction, rather than wallowing in yuck.  It is helpful to remember that my situation isn't entirely dreadful and I have a lot for which I am utterly grateful (mostly you wonderful people). 

I am trying to be good about doing things that I can right now. I am trying *not* to limit myself when there is no reason to be limited. (#behavioralactivation) For example, I am going sailing on Thursday. I don't really see why I can't go play on a boat. I'll wear all the sunscreen and be safe, so why not? 

The only challenge is that my side effects and I play a weird guessing game every morning. Is it going to be a rash day? How will my tummy feel? Is Spuyten going to bump into my spine all day, or is he going to be more subdued? Should I take some pain meds preemptively and be a bit groggy, or just wait it out? 

For the most part this has all been pretty manageable. I have some fairly predictable abdominal pain every morning around 5:30am, but it does not last all day. It helps for me to get up and move around; so, I guess it is just a little reminder to enjoy every minute of the day. I had a rash for a few days, but it went away with medicated cream. Sometimes my back hurts, but not usually when I am sitting still. The last few days, I have been experiencing a new weird side effect that I read about, but thought "that's dumb and not a thing." I was wrong. So, I have a hoarse/deeper voice every now and then. It does not hurt, but it is super weird; and it can be effortful to talk. (Apologies for not returning your call, this is probably why.)

So, it is all super manageable, but kind of annoying. I know the effects of treatment are cumulative and will become more challenging over time. So, for now, I am working hard to remember that I don't have to be miserable before that happens. There is not a lot of sense in spending my better days in perpetual dread.  Especially now that I FINALLY have a stretch of time without a doctor's appointment!!!!!! It has been FIVE days without a needle in my arm-- the longest stretch of the whole summer! Hoping to keep that going for a few weeks. 

xoxo