It’s not because there has been a lot of big physical things changing in the last week (some very minor improvements), but emotionally it’s been a tough one.
I was trying to think of something to say - because writing and chocolate are my two favorite things when I’m not doing real well. Couldn’t come up with one thing - so I decided I’m going to brain dump all over your computer or phone or iPad or whatever you might use. My hope is that sometime, someone, somewhere might connect with what I wrote and be blessed by it. So here goes…
- The whole concept of “It’s not going to get better” - at least not in the next 5 to 10 years - is foreign to so many people. That’s another source of isolation and frustration for the patients (aka me). My mom (and I love her dearly) is almost 82 and doesn’t do life gracefully right now. Every day, she asks me how my headaches are. Every day she reminds me of the things that I’m already fighting. I have asked her to switch the focus - not, “how are your headaches today?” (Cue next card) - how is the throat? Instead, focus on the whole person. “How are you.” My primary care doc told me in the first appt I had after January 30, 2018 - The AVM doesn’t have you, you have it. You are in chargeRepeat again and again. If you are a patient, look for that and confront the situations. "Jim, I’ve got to tell you something, got a minute?..When you ask specifically how my headaches are - you interrupted a moment in time where I might not be fighting the headache - and suddenly, it’s back in the center. Ask more generic (but still real and concerned) questions - "Hey TJ, How are you doing? You got a minute, I’d love to learn more about it - because it sounds really unique “thing.”
Ask how they are doing, ask if they need help with things - but let them control the amount of information and the way and time that it comes out.
Wow this really rambled - I’m going to start another one shortly…