March 11, 2021 at 10:08 am #16368Bailey VincentKeymaster
I had a Telehealth appointment with my CF team last week (I love them so!) and will have an in-person in a couple of months. I am so lucky that my team is so amazing and listens so well, and, funnily enough, my lead doctor shared how another patient had sent her something I had written! (Pure coincidence)
Before the pandemic, I was planning to invite my team to a dance show (although we never got the chance with everything shutting down) and I once sent them a video of our company-for-chronically-sick-dancers project that I was proud of at that time. I love the idea of having a team I can be close with, trust, and keep my life open towards… It gives us something to really fight and work for!
Question: How close are you with your CF team?
Have you ever invited them to personal triumphs like graduations or events? Do they know you outside of the hospital walls or do you prefer to keep those walls (metaphorically) up?
There are no wrong answers of course! Just curious how your current CF team dynamic feels for you.
March 12, 2021 at 8:53 am #16372Jenny LivingstonKeymaster
Like you, I am incredibly close to my CF team. It wasn’t something that happened right away, but throughout the years that closeness happened naturally. They’ve seen me through some incredibly difficult times. They’ve seen me at my most sick, most vulnerable, most afraid. They truly care about me as a person – something that goes both ways.
There are some team members of mine who seem to prefer keeping more “professional” boundaries and I’m okay with that. I can completely understand why that would be the case and don’t take it personally whatsoever. I am just as grateful to have them as care providers, even if we aren’t “friends.”
For my college graduation a couple years ago, my CF team gave me the sweetest card and gift. When I first took Randy to a clinic visit, I warned him that some of my “CF people” would grill him harder than my family, and also that their opinion might matter more than my family’s. This was a joke, but there’s some truth to it! My team knows a part of me that even my parents and siblings don’t fully know or understand. They’ve seen me in a difficult and toxic marriage and celebrated with me as I rebuilt my life after divorce.
They provide exceptional care, but more than that, they truly feel like family.
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