@luisa-palazola
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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! -
Luisa Palazola started the topic Crazy Stats in the forum Adults With Cystic Fibrosis 1 year, 5 months ago
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]
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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? -
Luisa Palazola started the topic Migraines in the forum Adults With Cystic Fibrosis 1 year, 5 months ago
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]
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Luisa Palazola started the topic BreatheCon CFF in the forum Adults With Cystic Fibrosis 1 year, 5 months ago
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]
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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 🙂 -
Luisa Palazola started the topic FAV THINGS ON YOUTUBE THAT AREN'T RELATED TO CF AND PASS TIME WHEN YOU'RE SICK in the forum Adults With Cystic Fibrosis 1 year, 5 months ago
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]
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Luisa Palazola started the topic CF is Existing in the forum Adults With Cystic Fibrosis 1 year, 5 months ago
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
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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.
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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?
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Luisa Palazola started the topic A Sick Playlist in the forum Adults With Cystic Fibrosis 1 year, 5 months ago
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]
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Luisa Palazola started the topic What're your CF Tattoos? in the forum Adults With Cystic Fibrosis 1 year, 5 months ago
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]
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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 🙂
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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?
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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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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…
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