luisa-palazola
Forum Replies Created
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I’ve never dealt with chronic pain. But, I have had arthritic flares pop up over time. From the CF community standpoint, I think we talk often about issues with chronic pain. But, and perhaps its because its not a big issue with me, I don’t know if its quite talked about in clinic
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I don’t have the Monarch — we talked about getting it and going through insurance at my last clinic. But, has since been not talked about. I have the AffloVest, and I really like how I can take it with me on trips with ease. But, lately I’ve mostly been just doing intense cardio in the morning and at night I’ll do flutter. So, I’m wondering if I should ever pursue the monarch. Do you find it as effective as the regular Vest?
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@jpaul Kinda like exist with no attachments?
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From what I’ve learned, being cautious/ aware of harmful germs is necessary, however it is also necessary to maintain your own peace. Finding that balance is very hard, especially when you don’t feel well and everything feels like a potential threat.
In terms of this post, some of those contaminated areas are easy to avoid and/or are sensible to do maintain clean or avoid. However, sometimes it’s inevitable to use them or come in contact. I think maintaining a regular and proper handwashing routine, and trusting your immune system and the things you can’t control is necessary. Otherwise, the panic and anxiety that surfaces from the stuff you can’t control, in itself, can be detrimental to your health. Be aware, practice standard precautions, and trust yourself.
In terms of the PFT equipment, I do know that the CFF has strict rules in cleaning those machines that are critical to keeping cross contamination (see link below) as low as possible. I think if you have any skepticism about the tech’s cleaning, it would be wise to let staff or the director of the clinic know.
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Ah! Yes @williamryan that’s the one I was thinking of! @ulisesvera creo que este sitio te puede ayudar! https://www.cftr2.org/welcome
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I’m not sure what my first mutation @tre-larosa! But,
1. I know I have a copy of the df508 and l1077P
2. What is a second variant?!
3. I was diagnosed when I was nine years old (2002)
4. I think the L1077P is relatively rare.I know there’s a really neat resource where you can look up your mutations and get some pretty neat feedback, but I have no clue where it is. @ulisesvera
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@ulisesvera por se acaso, sera que tu mutacion es G542X. Esto es lo que me aparece https://www.cff.org/What-is-CF/Genetics/Know-Your-CFTR-Mutations-Infographic.pdf
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Hey @jstolz1 awesome to have you here! I’m Luisa and I’m 25 with CF. I graduated about 2 years ago and studied political science and international studies. You say you’re studying journalism, have you considered chronicling your experiences with CF through a blog? I used to write a lot of my experiences (still do) on facebook, and it landed me a writing gig, which eventually led me to a job. Also SO awesome the flu didn’t land you in the hospital
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@legolise Hi! I don’t know much about access to Orkambi in Canada, but I am going to message one of my friends in Quebec and see if I can dig up some resources for you. If you have Facebook, please feel free to add me there, Luisa Palazola.
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Hey @tremblaymagmail-com I know for me I have had a different perspective growing up with CF, and I think maybe that was related to being a later diagnosis (I was nine when diagnosed) and my doctors growing up had always emphasized a future for me. Granted, I was always aware of my mortality and still am — and that’s definitely influenced my behaviors and relationships with others. Lately, I’ve found myself super appreciative and grateful for those who surround me, and I always let them know. I don’t think many people do that as often as I do, simply because the idea of dying doesn’t occur to them or they aren’t confronted with it as often. Or, that’s what I think. I think most people are very uncomfortable with the idea of death, and me as well, but I also know that.
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Aahhh dude I am HERE for this game. Right now I’m sitting in this nifty coffee shop and there’s some retro & cool salt and pepper shakers. And, FOR SOME REASON, whenever I think of salt shakers, I think of this one memory at Christmas dinner YEARS ago:
So I have an ENORMOUS family on my Dad’s side (he’s one of nine kids!). For Christmas we used to all gather at my Grandma’s modest sized bungalow in the heart of Mid Town, Memphis. Grandma has a pretty nice sized dining room table, but we’d still have to pull out fold out tables and chairs to make room for everyone at the dinner table. And we just essentially “added” the fold out table to the regular table — to make one giant table we all ate at.
So, side note — we also would eat raviolis made from scratch every Christmas.
Anyways, after dinner we were all talking — and my family is very expressive when they talk. Hand motions everywhere, voices incredibly jubilant and loud. And my Aunt Cici and Uncle Andy were sitting across from me, and I think my Uncle was making a point in his conversation, and accidentally knocked the salt shaker over. And he got so so excited, saying it was good luck and meant that they would have a baby. As they has been trying for years.
And ever since then, whenever I see salt shakers or someone spills salt, I think of babies, family, and good luck.
My cousin Aza shortly came after that.
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AH! I hadn’t see this post for approval! But, I LOVE this poem so much!
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Y’all, I’ve definitely been feeling so overwhelmed. I’ve got so many things I have to do mulling around in my mind — and then there are times I have the AUDACITY to think “Crap am I doing enough?” Y’all should see the amount of sticky notes I have on my desk. Reminders on my phone.
@morganpolen I really like that idea of taking time out to assess how to improve your schedule!
For me though, this is how I’ve learned to mitigate that sense of fear that comes with being overwhelmed:
1. Journaling — YALL THIS JOURNAL LOOKIN’ LIT. I write down ALL of my emotions. *I also try to phrase everything within an optimistic framework* and I also write down all of my intentions, which *I also try to keep my intentions and the motives behind them positive.* It keeps me in check.
2. I’m also learning to appreciate the little moments throughout the day. I find myself marveling at the squirrels haphazardly playing outside or, like today, I saw two geese fly overhead almost in synchronicity to the song I was listening to at the moment. At moments like those — this moment in time — feels almost, well, perfect. I kinda like the idea that there will never be a moment like the one I’m living in right now. So if I can, I try to absorb it.
3. I have a skill I’m working on that allows me to totally disconnect from everything around me. Sometimes that’s working out, but recently I’ve picked up on learning Portuguese. I try to study/ play DuoLingo like ten minutes a day. I get into it, too. Pronounce words and develop sentences. Of course, learning a language requires immersion. Sometimes that Netflix, or music, and one day Brazil! For now I’m getting there, but I’m really enjoying this journey of picking up a third language. It’s not perfect, but hell, neither are my first two languages. um dia seria escrevendo e falando em portugues sem problema, te juro!.I’m coming to the conclusion. That I am enough, I do enough, and even if I had nothing to do — I am enough on my own. I really have to be gentle with how I approach the narrative in my mind, otherwise I would be torn up inside. Anytime I have self- depricating thoughts, I come back with “Okay, but look at all the things you’ve gotten done so far. Whether it be in that day, week, month, and hell, in my life.”
And then I say, everything that needs to happen will happen at it’s own time. And sometimes I’ll have an edible.
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I was diagnosed with CF at nine years old. I was born a “healthy” baby and met all the typical weight milestones without issues, and didn’t have many respiratory problems — until I was eight years old. I developed a walking pneumonia that essentially wouldn’t go away. When I was nine, I distinctly remember the radiologist came to see me and my parents, after many doctor’s appointments, and looked at my x-ray and looked at me, saying that he thought what I had looked like “cystic fibrosis.” And a few weeks later I was getting a sweat chloride test at our local children’s hospital.
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Hey Breanna! YES! Please share your poem here.
We’re so excited to have spouses join and learn through our experiences as well. And heck, I think it would be super beneficial for ME to understand a spouse’s perspective
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Hi Maria! Exactly how I feel. I’ve been fortunate to grow up with brothers and a Dad who are incredibly supportive of me, and act as a role model for who I let in my life. I stay as open as possible, and in my dating experience — those who don’t care, won’t ask questions. And those who do, ask questions and always offer a big hug. <3
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Speaking candidly:
From about 19 and until about 23 I definitely was reckless with my drinking. In retrospect, I definitely thought it and I was cool, but it also certainly was a way for me to express some sort of “normalacy,” or to be able to say “yeah I have CF, but I’m doing all the things people my age do AND MORE.”
Hell I remember the NIGHT BEFORE I had my port replacement surgery, I was out at my favorite bar. Which makes me laugh, honestly.
Those were moments that I was proud of, and to an extent I still marvel at. Thankfully, because of my anxiety about my health (and, even while being inebriated, I managed to keep stay anxious — thankfully) I somehow made sure I:
a) did treatments, either before leaving to go out, or at 3AM (often drunkenly) at home
b) kept incredibly hydrated throughout the nightBut, going out and partying every weekend (and often more) definitely caught up with me, as it does everyone. And not at the expense of my health, but I made some really horrible life decisions and had some not so great friends. It eventually all came to a screeching halt in 2016 and my friend group kind of broke up, because of me and my poor choices.
And for a while, I felt SERIOUS FOMO (fear of missing out) and depression. And oddly enough, CF kept me safe at home and away from toxic coping habits. Now, three years later. I still enjoy going out for a drink or margaritas with friends, and sometimes I do get *drunk*, but no way in hell am I interested in 4 AM drunken nights.
However, there are other ways to decompress that I enjoy way more. Sometimes that’s exercise. Sometimes that’s cookies of the green variety.
— thoughts from a 25 yr old w CF
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Thank you!
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@williamryan it really is fascinating to think of. I think we are so entrenched with CF and don’t quite ever get a break, that we don’t totally process the trauma that goes alongside it, or the attachment there is to your body. Living a more normal life is awesome, but it feels like something is missing!
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1. I’ve had little GI involvement with my CF. I think growing up I had worse problems than I do now. I used to not be able to tolerate some really fatty foods (probably some pancreatic insuffiency I was dealing with, but refusing to take enzymes)
2. I’m on omeprazole, but since starting the triple combo — I’m noticing my acid reflux doesn’t quite exist. Kinda wild -
@williamryan wait which site are you using! if it’s the database I’m thinking of, could you post here?
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@roner13 Because of my gene mutations, I was never eligible for Orkambi. But, I did do the trial for Symdeko (and was on the actual study drug) and that medicine was incredible and my fev1 shot up 10%. Unfortunately, my cohort of the study was terminated early (there wasn’t enough information to support continuation with my mutation group) so I was VERY bummed, and the 10& Fev1 dropped back to my baseline. It’s certainly life changing. However, have you heard about the triple combination therapy? THAT is going to be a game changer for so many people.
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That’s how I am! CF usually comes up within the first date/outing with someone. I literally wear it on my sleeve (I have a tattoo of some lungs on my arm!). I always look for people who ask questions.
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@morganpolen exactly, it’s a partnership! CF or not — I genuinely believe when you decided to commit to someone, you commit to the up’s and down’s that come along for the ride, which are often unexpected and not always fun.
And in terms of CF — I think about the people I dated who didn’t quite understand CF, and for me — that’s not a me thing.
I think it says a lot of personal character to look up CF, to ask questions about our disease, and to be by our side. I can see how it’s scary, but hell, so is life. And I think those people recognize that life is full of unexpected up’s and down’s. 🙂