Jesus is coming back. Please repent of your sins and turn to Him. He is our only saving grace. My family is no stranger to tragedy. But thank God for the year you have lived. What a light you are. If you knock on Jesus door he'll answer. :) Pray about everything worry about nothing. God bless you. 💕
Hannah its Tylene (iLENE'S MOM) we love you and miss you so much we hope all is most well with you and ur c.f. we always listen to u sing this amazing song THANK YOU for being and supporting Ilene u are always family to us as well as the Rockwells.... Sara and Ron send there love as well.. we love you fly high angels
i don’t think you should of been so critical about the trailer, it’s literally such a good movie. the movie is 100% for cfers do you know the amount of research and work and interviewing and talking to other people who have cf just to make this movie, if it wasn’t for the incredible claire wineland this movie wouldn’t of even existed. of course it’s not going to be completely accurate it’s a hollywood movie and hollywood movies have certain and specific standards that they have to live up to no matter what the movie and what it’s about. and no their voices aren’t scratchy? why would they be? these people don’t have cystic fibrosis they’re not going to sound like they do (in fact claire wineland actually taught them how to do a more realistic cough!) and yes both haley lu richardson and cole sprouse had to go on specific diets to (in the words of cole sprouse) show/ imitate how ‘gaunt’ or ‘frail’ a lot of cfers are
This whole video just made me realize you only base this off your own experiences and not about anybody else and that your only thinking about yourself like saying CFers don’t fall in love so you speak for all of them now like seriously this whole video has just made me not want to subscribe or like but dislike instead
For my whole life I have had minor type stuff that you have in spades, serious allergies, sinus infections, etc. Still ruined my life, but when it's your life, you don't know any better, it's all there is. It was and is your life. When I was younger I would ignore all the things I could have done to make it better, and even when I got older and there was better treatment, got surgery, etc, I would still skip getting my allergy shots, do daily maintenance, etc, even though I got sick and felt bad more often. But then I didn't. Now I always take my pills, use my steroid spray twice a day, get my shot every two weeks, get enough sleep. It may take a long time to process this stuff. Don't worry about it, just let yourself do it. If you skip something, let yourself do it the next day. Process it, let yourself do the right thing. Definitely see a therapist about getting friends, but remember, the only therapy that has been shown to really work is the kind where you DO STUFF (make yourself meet and talk to at least one new person a day, etc). Talking about it just gets you to that point. Wish I could help you out about exercise, that stuff hurts and is boring and takes a long time. But I do enough to keep myself together (you won't have that problem with exercise for a while). And besides, with COVID-19, you have to give yourself a pass until the pandemic is over. Nice vlog, by the way!
This is the best news. And hey, you don't need to apologize to anyone for being human and missing meds sometimes. That's just a lot of extra baggage to be carrying around. I'm confident that you'll figure out a way to do what you need to do for your own well-being. Also, those glasses are super cute.
the movie was made for a girl named claire and she had cf and she had a huge part in making it. all the things about cf they got is from claire, who had cf.
also with the topic of taking your medicines, you are not alone at all with that, I go days without doing any of my nebs or pills because of lack of motivation, and i dont even have trikafta yet lol. Ive allways struggled with keeping a good meds routine. also that fact of knowing that most of my lung damage and health could have been prevented if i had just taken care of my infections better as a child and teen, now as an adult i regret that and it demotivates me when it comes to trying to take them. and I dont think anyone should feel guilty for missing doses at all.
seeing this video makes me super excited because the uk has just got approval and funding for this dug, should be around 2-3 months from now when we are meant to get it, i relate to how your cf was affecting you pre trikafta, I also cant stand on 30min train rides anymore, last time i rode a train was in december and i couldnt stand, I had to lean on wired half seat lean pad things. also just walking up 1 flight of stairs was difficult, needing to stop and catch my breath at the top. the tiredness and long mornings. I really am super excited for this drug, I hope it makes my heath stable and allows me to go back to working 30-40 hours a week instead of the 16-22 hours i had to limit down to because of my cf, and that was 6-7 months ago, way before lockdown, and because of lockdown i have had to stop working out because gyms are closed and vulnerable people are not allowed outside in the uk, this has caused my lf to go from 65% down to 48%.
!!! I'm so happy you're getting better. It sounds like it must be such a huge adjustment rethinking how you exist in the world now. I really hope you followed through with having a look around for a therapist you vibe with. I feel like if you told them all the things you listed here they'd be able to give you some great advice <3
Hey Hana! I wish i could just talk to you through Skype or something... I live in Sweden and we have not had access to Trikafta yet (it will probably take a few years as with Orkambi...). However, I have been taking Orkambi since August 2018 and it has had a very good effect on my body. I have mixed feelings when you tell us about your experience, I am a little jealous as I wish I could start on Trikafta. When you say you don't take it, I just want to say - STOP! Do it! But I understand it's not that easy. When it comes to doing your breathing treatments I understand you, it is natural to take a break when you feel better. After so many years of struggle you feel free, and YOU deserve that, we deserve that... To rest and enjoy life for when times get harder. I sometimes exercise when I don't have the energy/motivation to do my inhalator, it's another way to take care of yourself and it can be as good. Also want to say that I recognize myself a lot in what you say about identity. There is a lot that is changing, for the better of course, but it is understandable that it is a big change. So hopeful and so happy to hear that this miracle drug is out there. Love from Sweden! <3
It's annoying interrupting all the time and saying "this is not like that" or "not right". You actually are the only one cfer youtuber that reacted like that for this movie. It's sad that you can't acknowledge that this movie is for you. Also it's good for you to know that there was a CF DOCTOR ON THE SET who probably knows some things better than you do. My suggestion for you is just to start being open-minded.
I am 37 and Trikafta has made a huge difference for me. I am rarely coughing, barely get out of breath anymore. I also noticed my energy has gone up significantly. Pfts in 3 months went from 38% to 51%.
Something I found that helped me with taking my medications was having a checkbox in my planned for morning an nighttime meds. Just having the accountability of seeing it not done, was enough of a push to get me to take it
So good to hear from you! I can’t speak to Trikafta, as I don’t take it, but in general, I find myself having negative thoughts about myself when I am not completely adherent to a treatment. I feel that I am taking my (relatively) good health for granted, and shame on me. I have to remind myself that no one is perfect, and all we can do is our best. I hope you are able to find a balance of striving for adherence, but also giving yourself a break sometimes!🙂
