Forum Replies Created

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  • jenny-livingston

    Member
    February 15, 2023 at 9:42 am in reply to: Encouragement for couples in the CF community

    Jenn has such a way with words, and I love that she doesn’t shy away from talking about the harder aspects of CF. While she and I are in different positions — she being the parent of someone with CF, and me being the person with CF — she is spot on when she talks about it being a team effort. I am so glad to have someone in my corner 100% of the time, even when it’s not easy.

  • jenny-livingston

    Member
    February 9, 2023 at 12:19 pm in reply to: Overcoming Routine Fatigue

    Personally, I can’t say that I experience “routine fatigue.” The only part of my life that follows much of a routine is my healthcare. My respiratory treatments have been a “built in” part of my day for so long that I don’t even really think about it anymore — I just do them. Things like pills and sinus rinses, those all happen in the morning and evening as well (following treatments). The rest of the day is kind of “anything goes” and I find a schedule far too stressful and constricting to be beneficial. I do enjoy the loosely structured routine of my mornings and evenings though.

  • jenny-livingston

    Member
    February 6, 2023 at 9:57 am in reply to: What are some books you’ve been reading the last month?

    I think reading a book a month is a great goal! I used to read for entertainment more than I currently do — grad school has me drowning in textbooks for the time being. During the course of my classes so far, I’ve kept a list of book recommendations from my professors and classmates. I have no idea when I’ll get to them, but I look forward to the time that I’ll have the capacity to work through that list.

    If you had to pick a single book that is your favorite or most highly recommended, what would it be?

  • jenny-livingston

    Member
    January 20, 2023 at 1:27 pm in reply to: What is a comfort show for you?

    A few of mine are Schitt’s Creek, Parks and Rec, The Office, The Mindy Project, and — something of an entirely different feel — Forensic Files (I’ve been told this is odd, but the narrator’s voice and process to finding justice are super comforting to me). As Gina said, I love something I’m familiar enough with that doesn’t require my full attention, and anything that gives me a laugh is a win.

  • jenny-livingston

    Member
    January 9, 2023 at 9:28 am in reply to: Representation in Media

    Okay, I’ll be the first to say — I didn’t hate Five Feet Apart. Actually, while it was far from perfect, it’s probably been my favorite media portrayal of CF so far. The mistakes and exaggerations of certain things drive me a bit crazy, but I thought it did such a good job of portraying the emotional elements of CF, particularly when it comes to the unique friendships between us. I may be very biased when it comes to this because I’ve been fortunate enough to have become very good friends with other CFers at my center. I’ve heard people say (about the movie), “you’re not allowed to just wander the hospital with other patients at night” but I literally used to do that exact thing! I’ve also lost some of these friends and when Stella says, “He was my best friend and I never got to hug him,” I feel that deeply. All of this to say, something about Five Feet Apart just does it for me.

    I’d like to see more media representation of CF in general. I’ve seen a few reality show contestants who have CF, but they are never shown doing treatments or anything and their story is always painted as being super inspirational; overcoming their illness in order to succeed. I’d love to see portrayals of the day-to-day life of someone with CF. We don’t need to “overcome” anything in order to succeed or be happy – we can do that while also living with and managing CF.

  • jenny-livingston

    Member
    December 7, 2022 at 10:10 pm in reply to: What kind of music do you listen to?

    Okay, I absolutely love The Black Parade! My brother was really into punk rock when we were in high school, and his music tastes influenced mine quite a bit at that time. My daughter and I have definitely bonded over our shared love of music, and we especially love experiencing it live! In the last year we saw Harry Styles twice (I told you he’s our boy), Louis Tomlinson, Lizzo, and a 90s country show with Aaron Tippin, Colin Raye and Sammy Kershaw. My music taste is kind of all over the place. I don’t have a favorite album or even a favorite genre. This past week, I’ve listened to a ton of Ghost and The 1975. Next week, it’ll be something else… maybe Green Day or Good Charlotte for old times sake.

  • jenny-livingston

    Member
    November 28, 2022 at 9:26 am in reply to: What are Your Favorite Holiday Traditions?

    I grew up surrounded by extended family on my mother’s side. We got together very frequently for dinner, movies, summertime barbecues, etc. I can’t recall specific holiday traditions but my childhood as a whole was colored with family togetherness. As an adult, some of my siblings and I have begun new traditions with our children. Around Thanksgiving, we take a trip into the nearby mountains to harvest Christmas trees. WE bring sleds and spend some time playing in the snow before bringing the trees home to decorate. Another tradition we have is Christmas brunch at my mom’s house rather than another ham/turkey dinner with all the fixings. I love that my daughter is getting to experience the same closeness with her cousins that I had during my childhood.

  • jenny-livingston

    Member
    November 18, 2022 at 12:59 pm in reply to: What are You Trying to Understand About You?

    William, I’m so glad you’re here! Thanks for this introduction, and also for the question you posed. I think that understanding ourselves is an endeavor with no end. Something I’m learning to understand is the way that CF has been part of my identity for so long, and what it means now that much less of my time and energy are tied up in CF these days. I no longer identify with CF in quite the same I have for so long. Learning what that feels like and what it means for me has been… interesting.

  • jenny-livingston

    Member
    October 15, 2022 at 2:10 pm in reply to: How do you know it’s time for a tune up on Trikafta?

    Luisa, I oftentimes wonder this myself. Since starting Trikafta, I’ve been able to clear up any issues (including a minor bout of pneumonia) with oral antibiotics. It’s been almost 3 years since my last hospital admission. I know that I’ll need IV antibiotics at some point in the future, but I don’t know if I’ll be able to recognize that need right away. My body has changed so much, and I’m not longer as closely attuned to what it is telling me. You posted this a while ago… how are you feeling now?

  • jenny-livingston

    Member
    February 24, 2023 at 1:31 pm in reply to: A farewell of sorts

    Bronwyn and Jeanne,

    Thank you both for the kind messages left here! You may have seen me mention that I’m in graduate school, pursuing a degree in social work. I am able to do this because of the miracle that Trikafta has been in my life, but it’s taken up so much of my time and energy that I’m needing to take a step back in some other areas of life. The connections made here have truly been a light for me over the last few years, particularly during the pandemic. I know this forum will continue to be a support to many, and I look forward to checking back in as I’m able. I wish you the very best and hope to chat again soon!

  • jenny-livingston

    Member
    January 19, 2023 at 4:10 pm in reply to: Let’s talk about bugs (sputum cultures)

    Deanna, it’s interesting to me how we can all culture SUCH different things! I haven’t ever had either of the things you mentioned here, and I genuinely had no idea a human could contract Bordetella from a dog (I’ve had them my entire life). Thanks for sharing this! I hope you are currently doing well. How are you tolerating Trikafta at this point in your journey?

  • jenny-livingston

    Member
    January 9, 2023 at 9:14 am in reply to: Does getting older scare or delight you?

    Janee, I love this so much! You have overcome many things, but what I love most is the positivity radiating from this post. I hope your year of 60 things is wonderful! Maybe you can give us some updates throughout your year of new adventures.

  • jenny-livingston

    Member
    January 3, 2023 at 10:11 am in reply to: A quick COVID check in

    Christina, remaining positive for three weeks is so interesting to me! Especially with no symptoms. When my daughter first had COVID, she was asymptomatic and nobody else in the house caught it. Hopefully this illness moves out of your home quickly and without complication.

  • jenny-livingston

    Member
    January 3, 2023 at 10:07 am in reply to: A quick COVID check in

    Ron, I am so glad to hear that you’re both doing okay now!

  • jenny-livingston

    Member
    December 28, 2022 at 10:27 am in reply to: A quick COVID check in

    Annette, what a stressful situation! I hope your husband recovers fully and without complication, and I hope you stay COVID-free!

  • jenny-livingston

    Member
    December 1, 2022 at 5:25 pm in reply to: Caregiver Shoutout

    Judy, this is beautiful! I am so happy you have Don in your life, and I am sure he feels fortunate to have you. My partner has also been someone I can lean on, and he is such a loving caregiver.

  • jenny-livingston

    Member
    November 21, 2022 at 12:21 pm in reply to: What is the biggest shock since your diagnosis?

    Judy, what an incredible shock! I’m so glad you’re still here. I can only imagine the relief that came with an official diagnosis… finally! But I can also imagine the frustration of having to convince medical professionals that you do indeed have CF while also being the one to teach them about it.

  • jenny-livingston

    Member
    November 2, 2022 at 10:03 am in reply to: For Older Folks with CF + Trikafta

    Martha, your disappointment is valid. I believe it is perfectly normal and natural to feel both happiness for others and the jealousy you describe. I am so sorry to hear that you haven’t seen the benefits you hoped for, and I am glad you feel comfortable enough to share your thoughts with us here.

  • jenny-livingston

    Member
    November 2, 2022 at 9:59 am in reply to: For Older Folks with CF + Trikafta

    Judy, I think you are right when saying that younger people will likely see more benefit from Trikafta. Older bodies have been through so much and experienced damage to an extent that cannot be fixed by these drugs, as amazing as they are. I am glad to hear that you’ve seen some improvements, but sorry to hear that you think it is affecting your mental health. This is something I have experienced as well.

  • jenny-livingston

    Member
    October 25, 2022 at 11:01 am in reply to: Dealing with Feelings of Survivor’s Guilt?

    Timothy, you are not only worthy of sharing airspace with others, your presence and contribution are so valuable. I’m so glad you’ve joined this community — a huge thanks to your partner for the encouragement and to you for having the bravery to do it. This comment of yours genuinely moved me to tears, that last paragraph in particular. Thank you, thank you, thank you for being here and for being so vulnerable.

  • jenny-livingston

    Member
    October 25, 2022 at 10:23 am in reply to: When did you first meet another person with CF?

    Wow, Kerry, this is similar to my own family’s experience. We were very good friends with another family with 2 children with CF in their family. We also maintained a decades-long friendship with an adult with CF who was a former camp counselor of ours at CF camp. Even after we moved out of state, he stayed with us at our house when he’d come visit. It was only years after his death that I realized he cultured some very aggressive scary bacteria that we simply didn’t understand the risks of at that point. I know there is reason for the precautions we take now, but I sure do miss those earlier days when CF friendships were “allowed.” I hope your girls are doing well today!

  • jenny-livingston

    Member
    October 17, 2022 at 5:22 pm in reply to: Dealing with Feelings of Survivor’s Guilt?

    Laura Lee, I firmly believe we can hold space for both gratitude and guilt at the same time. I, too, am so incredibly grateful for the life I have, while also feeling strangely guilty that I’ve been this blessed. I am no more deserving than anyone else. A friend of mine said something to me a few years ago that I’ve carried with me ever since. When I was starting Trikafta, feeling so happy for the opportunity but knowing that not everyone would have access or eligibility, she said to me, “Gratitude is the answer to so many of life’s questions.” Anytime I feel guilty or underserving or sad for the loss of so many others, I try to remember that gratitude is the answer. A conscious practice of gratitude has helped me navigate so much! Thanks so much for sharing your thoughts on this.

  • jenny-livingston

    Member
    October 6, 2022 at 9:50 am in reply to: Late CF Diagnosis

    Judy, what an incredible story! Thank you for sharing that with us. I’m glad you were able to finally get a diagnosis and also happy to hear that you’re doing well at 77! We talk about Trikafta and it’s side effects pretty frequently here. For all the great things it has done, some of us do struggle with it. I’m very glad you are here on the forum!

  • jenny-livingston

    Member
    October 6, 2022 at 9:44 am in reply to: An Acronym Guide for the CF Community

    Tim, yes! This is one we use frequently, but I hadn’t thought of it. Thank you!

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