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  • Luisa Palazola posted a new activity comment 1 year, 5 months ago

    Oh my gosh, that’s so cool. Are your books available to order on Amazon. And, I can’t imagine what it is like to lose four siblings. CF is brutal, especially when the medications and therapies haven’t been there. Also — I will be in North Carolina next month, but I am going to Charolette!
      • I think all of my books are available through Amazon, though I haven’t looked recently.
        When we were all growing up there wasn’t much talk about CF in the family, and about the only treatments available were antibiotics and back-slapping percussion. Terrible for our parents who had all those babies after WWII only to find out that the…

        [Read more]

        • May you remind me of the name of your books, and I’ll be sure to look them up. And, jeez — post WWII was such an apocalyptic space for the world, toppled with the news of CF… I can imagine you took on that identity to not want to have CF.
            • The three books published since my transplant are :Bain’s New York. The City in News Pictures, 1900-1925; Sunny Land. Pictures from Paradise; and Some of Us. (The last two are collections of my photographs. You can see some of my pictures on my website: michaelcarlebach.com
        • Have you seen these stats before, our team at CF News Today came up with this neat infographic of strides recorded by the Cystic Fibrosis Foundation. And, I think it’s pretty phenomenal:

          For, me it’s boggling to realize that I am one of those people. I am one of those people who has not only benefitted from the newer medications and…[Read more]

        • Luisa Palazola posted a new activity comment 1 year, 5 months ago

          Hey Ashley, how’re ya?! I wanted to introduce myself — I am Luisa and I am 26 with CF. I also am one of the moderators here 🙂 How have you been? ALSO! So awesome you’re in Australia!
          • Luisa Palazola posted a new activity comment 1 year, 5 months ago

            Hey Michael! So glad to have you on the forums. I am Luisa and I also have CF, and I am one of the moderators here at CF News Today. I think it’s so AWESOME that you had your transplant in 2005. How are you doing today?
            • I’ve been dealing with pretty gnarly migraines over the last few weeks. I’m no stranger to migraines, in fact when I was 16, I was admitted because of getting migraines. That admission, I also had an MRI of my head — and, it turns out I have a birth abnormality called Arnold Chiari Malformation — type 1.5 to be exact. It’s the when the

              “lower…[Read more]

            • Head’s up! The CFF hosts an annual virtual event for people with CF for a “weekend of sharing, connecting, and learning as we join together for a free, two-day virtual event to discuss experiences unique to people living with CF.” This year it it is Sept. 20 and 21. Sign up…[Read more]

            • Luisa Palazola posted a new activity comment 1 year, 5 months ago

              Pues todo bien por ahora, he tenido muchas problemas con la hemopytsis. Pero estoy en una de las estudias de Vertex, y ese medicina me ha cambiado todo. Y bueno, como el FQ es una enfermedad hereditaria, todo la vida. Pero me diagnosticaron un poco tarde — a las 9 años. Y vos, a que edad te diagnosticaron, como le va con tu salud?
              • Luisa Palazola posted a new activity comment 1 year, 5 months ago

                Hi Jodie! I am Luisa and I am 26 and have CF — I see you’re a research RN. I am in a study and have been with my research nurse for the past 4 years, we spend so much time together that now she feels like a second mom to me <3 I hope you are well, and if you need anything or have any questions, I am here 🙂
                • Luisa Palazola posted a new activity comment 1 year, 5 months ago

                  Hi Hopson, how are you! I am Luisa and I am 26 and I have CF — I also am one of the moderators here 🙂 Do you have CF or does a family member of yours do? Either way, let me know if I can be of any help 🙂
                  • 1. Christina Randall’s channel. She is a becoming YouTuber who has chronicled her experiences in prison with rawness and realness; something totally foreign to me and I think offers a facet of life outside chronically ill life.

                    2. CG Kid is a recovering poly addict, and talks openly and honestly about drug addiction. Again, it’s something very…[Read more]

                  • I wrote this a few months ago, it’s an unedited culmination of my thoughts on living with CF:

                    “It’s CF Awareness Month. There are a lot of ways people choose to see their disease, if they even want to see it as a disease.

                    This is how I feel:

                    CF has made me confront my own mortality. CF has made me confront mortality of those I love.
                    CF has s…[Read more]

                  • Luisa Palazola posted a new activity comment 1 year, 5 months ago

                    Hi Kaylee! How are you!

                    I am Luisa and I have CF, too. I am also a moderator here 🙂 Let me know should you need anything

                    • Luisa Palazola posted a new activity comment 1 year, 5 months ago

                      Ya veo — entonces vas fuera del estado. Pero, gracias a dios que no te queda tan lejos. Yo vivo en Memphis TN, pero mi mama es venezolana. Yo también tengo que viajar para ir a mi clínica, que queda como tres horas de en Nashville. 🙂
                        • Como as estado de tu salud? Hace cuanto tiempo tienes CF. Espero que puedamos hacer amigas y poder platicar mas sobre CF.
                            • Pues todo bien por ahora, he tenido muchas problemas con la hemopytsis. Pero estoy en una de las estudias de Vertex, y ese medicina me ha cambiado todo. Y bueno, como el FQ es una enfermedad hereditaria, todo la vida. Pero me diagnosticaron un poco tarde — a las 9 años. Y vos, a que edad te diagnosticaron, como le va con tu salud?
                          • I think what you consume (whether food, television, news, music, ANYTHING — impacts your mood and perhaps your ability to get better). At the very least, this music helps me feel a bit better, for various reasons (or for no apparent reason) Here are my top songs that I listen to when I feel like sh*t. Link me the music you like when you feel like…[Read more]

                          • Last year I got my first real tattoo. I scheduled an appointment with an artist I had followed on IG and drove 3 hours to get a my piece done by him. After him postponing my original appointment and then kinda forgetting I was coming on our rescheduled date, a resilient best friend, and some coffee: I got my piece.

                            I won’t leave out the s…[Read more]

                          • Luisa Palazola posted a new activity comment 1 year, 5 months ago

                            Hiya Valerie! How’re you? I am Luisa and I have CF, and I also am a forum moderator here 🙂 Let me know should you need anything!
                            • Luisa Palazola posted a new activity comment 1 year, 5 months ago

                              Hi! I am glad you are here, I am 26 and have CF. I am also a moderator here 🙂

                              I see your son has CF too, and that you worked with quality improvement. I used to work on a quality improvement subcommittee for my local children’s hospital, haha. Well, I just wanted to pop in and say hi, and to let me know should you need anything 🙂

                              • Luisa Palazola posted a new activity comment 1 year, 5 months ago

                                Hi Mike! Just wanted to check in! How’re you?

                                I am Luisa and I am 26 and I have CF. I see your son has CF, too. How is he doing?

                                • Luisa Palazola posted a new activity comment 1 year, 5 months ago

                                  Hi Yesenia! How’re you? I am Luisa and I am 26 and have CF, too. I am also a forum moderator here 🙂 I see you’re from Iowa — what clinic do you go to and do you like it? Let me know if ya need anything!
                                  • Luisa Palazola posted a new activity comment 1 year, 5 months ago

                                    Hi Lia! How’re you?

                                    I am Luisa and I am 26 with CF and I also am one of the moderators here. Does any of your family have CF? Let me know if ya need any help 🙂

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