With the promise that Trikafta potentially holds for me, along with starting suppressive Doxycycline for MRSA, and based on the improvements (health-wise) I have had, I feel like I am entering a stage of reinvention.
I was getting ready to die. I have been reading books on “how to live as you die” and “how to accept” death. Less than 2 months ago, my CF doctors discussed lung transplant with me (I do not plan to do so), and also mentioned a feeding tube for nutrition.
I couldn’t even think about anything besides surviving because I was always so sick…every 3-4 weeks 103 degree fevers, going on O2 sometimes for 6 months at a time, hospitalizations only 6 weeks apart, and my CF team telling me they were “out of ideas”.
And now, I have some hope – and have all this stuff that I want to do, but how do I start living again? Doing stuff? Getting out? Seeing friends? Will they have me back? Am I still important to them?
I also have no idea what my interests are at this point, though I love writing, acting, and beading. In the past, I used to read a lot but not lately, I used to sing but not in 30 years bc of a throat condition that killed my pipes. I have spent a lot of time running support groups online, and – this may be a surprise to many – volunteered as a radio DJ for pirate web radio station/chatroom for a year. But what now?
A New Me?
At 48, I am starting over in a way. But I prefer to see it as starting something new, not in place of where I have been surviving.
Just not sure how to start. After my sinus surgery in 3 weeks, I want to hit the ground running. In the meantime, self reflection and decluttering my house as my body gives me bursts of energy.
A Call to Action
To all of my friends, family, and sorority sisters…
If anyone who knows me from any part of my lifetime had any suggestions, clubs, groups or idea of something that I might be able to do (seriously, don’t suggest “town adult soccer team” because, like, have you ever seen me kick a ball?), or anything that you are part of and think I might be interested, please let me know!! I am looking for something to start in the Spring/Summer.
Also, I would love to start seeing people. I live in Central Connecticut but at some point plan to resume driving and would love to meet up with old friends.