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  • Highs and Lows Again (Wow, What a Week). You?

    Posted by bailey-anne-vincent on July 26, 2021 at 1:56 pm

    Hello forum friends! I have been off the forum for some of the last week due to surgery recovery and… well, it hasn’t gone well. I plan on writing a way-too-honest column about it (to get it out of my system), but the short story is: I am struggling much more than I ever anticipated and feel rather blindsided.

    I still can’t even sit up! Which means no driving… eating only while leaning to one side, tilted up… and, of course, not sitting squarely to type. (I am very inept at typing while laying down, though currently trying.)

    Anyways, regardless of this, my week has kicked off with a request for a reporter to do a full press piece on my dance company in a few days (which means I’ll have to push through this pain for sure?).. my pre-teen hitting a hormone-wave of tears out of nowhere (my shirt is still damp from the teenie-teen crying)… and so much more. I can’t even process how much has just happened in 24-hours, while feeling my very worst.

    So that leads me to this week’s first question:

    What has been the highest HIGH and lowest LOW of your day so far?


    paul-met-debbie replied 2 years, 8 months ago 3 Members · 2 Replies
  • 2 Replies
  • jenny-livingston

    July 29, 2021 at 11:29 am

    Bailey, I am seeing this days after you posted since, as you know, I’ve been away from the forum as well. Rather than focusing on this specific day, I’m thinking of the last several days (since we left Utah). The day we were flying out, I lost my wallet. I had left it at a gas station an hour away from the airport, but only realized this once we arrived for our flight. After several panicky phone calls, a speedy trip back to the gas station, and a last minute “your wallet was found in the dumpster” (stripped of the cash, but with all my cards and identification still inside), we were able to rush back to the airport and somehow made our flight. I felt like I had an emotional hangover for days. It was simultaneously the most unfortunate and luckiest things I’ve experienced for a while.

    The good? Being in Boston with my best friend and her family. Since we’ve visited before, this trip is much less about touring the area and more about simply spending time with each other. She has a pool in her home which is where we’ve spent a lot of time the last few days and this vacation is just what my weary heart and mind needed.

  • paul-met-debbie

    July 30, 2021 at 2:39 am

    Hi Bailey,

    I am sorry to hear you are struggling so much, hope things will soon improve for you.

    I can’t recall any lows, but a high of last week, apart from my birthday of course, was the long overdue visit to my cf team. They prepared a vip treatment for me, booked a special room in a different part of the hospital that was close to the car parking so that I could reach it easily. One of the nurses even picked me up at the entrance and walked with me to a new imaging department where I got my thorax x-Ray. The other nurse draw my blood in the vip-room so that I didn’t have to walk for that either. And they did the sweat test as well. Then the doc joined us to talk over the x-ray and instruct me about Kaftrio. Fortunately my liver functions were excellent I heard later that afternoon. On my request, they all wore N95 masks, I had my N99. So, they really came through for me, and it was good seeing them all after three years. They will arrange for me to have the subsequent blood tests to monitor my liver on Kaftrio with my personal physician, so I won’t have to make the trip to the cf centre every time.

    Cheers,good luck with the press piece,

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