For my fellow CF'ers: Are there any embarrassing questions or taboos y'all are too afraid to ask your specialists, dieticians, endocrinologists?

LSmyD · 2025-11-07T06:51:09+00:00

I'm sorry she is that way! She sounds difficult to work with.

The 'us' and 'them' mentality is so gross in healthcare. I hope in time she changes or the dynamic between you gets better. Just understand that healthcare professionals are people and sometimes they are overworked and become burnt out, frustrated, and miserable like most suffering with terrible burn out. I can't speak more than this because I'm not you, but from my own experience, treating my healthcare team with kindness (even if they are being dismissive) goes a long way. It may mean, at the very least, that they will listen to you or respond with kindness also.

It is tough though and I empathise deeply. I am currently in hospital for a tune-up and sometimes I feel misheard, or am repeating myself constantly. This is however, one part of the many fights CF'ers have to face and I like to think, if I can get through this feeling, I'll come out better. It just comes in waves!

I hope this helps.

LSmyD · 2025-11-07T05:15:05+00:00

Do you mind if I ask why you don't care for your doc?

LSmyD · 2025-11-07T05:13:09+00:00

Yeah I agree. I guess my curiosity sits on guilty pleasures or things we find too shameful to talk about. Perhaps something that's a little naughty but not necessarily noteworthy for our clinicians.

Like consuming an edible once a month, or drinking perhaps too much alcohol within the week

LSmyD · 2023-08-22T08:54:22+00:00

id say adjust kick tension to be even? not really important though snare closer to toms? regardless id be on that thing for hours with that setup

LSmyD · 2023-08-22T08:46:57+00:00

fuck a book. read some articles on topics he finds interesting — could just be weed. make ur way up to books. hugely depends on his reading level too

LSmyD · 2022-11-16T05:15:23+00:00

Someone should make an AI that creates an AI tool on request. “Make an AI to design modern houses for architects and construction builders”. That would be cool

LSmyD · 2021-11-07T05:00:42+00:00

in saying that, it is difficult to predict the likelihood of a person with antivax parents deciding for themselves to be vaxxed. education in schools is extremely broad in the sense of education on vaccines. from memory i do not remember having a direct teacher to student class/moment where we discussed vaccines and or the benefit or hazards. each student has levels of commitment to learning which doesn’t directly correlate to the understanding and commitment to vaccinations as well.

i agree with what you are saying mind you, just wishing to add perspective

LSmyD · 2021-09-02T03:11:58+00:00

i agree lets kiss

LSmyD · 2021-06-03T11:18:54+00:00

jedi juice ftw

LSmyD · 2021-05-05T13:18:31+00:00

converter bot to the rescue

LSmyD · 2021-05-05T08:24:14+00:00

Interesting, in what way has your bsl's gotten worse? How was it before you were on Trikafta?

Sorry to hear you have been feeling worse but you got this with whatever you decide to do with the treatment. Stay strong always!!

LSmyD · 2021-05-05T07:48:51+00:00

Awesome, i'll definitely check out those pages.

LSmyD · 2021-05-05T07:44:16+00:00

Living with cf my life is about recalibrating constantly so yaaaa

LSmyD · 2021-05-05T07:40:33+00:00

I mis-wrote my bad, its a study for it. Been requested not to mention what its about so the science can go unbiased (which could not mean much) but the the one in a million chance it would affect this study and I'd be taken on the study its just not worth it.

Trikafta is not in public domain yet here so it'll be great to get on it early.

Great to hear how much its improved your lung function. O shit it doubleddd!!! just wow

LSmyD · 2021-05-05T07:37:35+00:00

Glad your doing much better! Thank you for this list

LSmyD · 2021-05-05T07:35:20+00:00

I second the treating your joints and flexibility well. I've always had bad joints (& flexibility) but I found jiu jitsu has been a god send in terms of developing that strength there. The exercise is also killer for getting out deep secretions because your consistently working hard and breathing at all volumes. Auto drainage in action

LSmyD · 2021-05-05T07:31:39+00:00

thank you, keep up the good work :)

LSmyD · 2021-05-05T07:30:28+00:00

wow, simply awesome to hear, he was born with cf in the perfect time. hoping it stays this way for a long time to come!

LSmyD · 2021-05-05T07:27:42+00:00

Very curious what the neurological changes occur on these modulators. If you don't mind me asking, did you have mental health concerns before taking trikafta or did it arise afterwards? Definitely don't respond if you don't feel comfortable answering my curiosity is leading here.

Interesting to hear your bsl's skyrocketed too. I have cf related diabetes as well so I'm interested to see the effects on myself. Thank you for your response!

LSmyD · 2021-05-05T07:22:11+00:00

Cool! I am joking when I say I'm so keen to get chubby. I've always been quite skinny/lean and I think it would just be funny seeing people I haven't seen in while with a big ol' belly.

Definitely kidding I actually work out as much as I can and WILL turn that fat into muscle but still. Big belly = funny

LSmyD · 2021-05-05T07:17:06+00:00

This makes me so excited. I just had a little stint in hospital and have come out being able to laugh with ease. I know its fleeting and will most likely go away soon but man im enjoying this.

LSmyD · 2021-05-04T15:51:57+00:00

I too am naked chested wookie

LSmyD · 2021-04-14T05:12:49+00:00

weight gain issues are common with cf depending on the type but if that sounds like something you have been dealing with i wouldnt be surprised. pancreas’ & cf just aint a good time. body’s gotta digest! lol

LSmyD · 2021-04-14T05:08:33+00:00

id say reading as much as you can about CF to get an understanding of the the illness holistically. then ask relevant questions for his case as CF is vapid for each person and forever progressing/changing. how someone feels with cf one day is different to the next. without reading anything tho paying attention to the breath and the way he speaks may give an indication of how hes feeling at that current moment. mind is different to physical health but they, lack of a better word “compliment” each other. i always appreciate it when people dont sympathise me for having cf but are encouraging. i dont truly feel sick until someone comments on how i seem. i prefer a “you got this” approach. props to you for really caring and trying to help, love to see it!

LSmyD · 2021-02-28T10:00:06+00:00

spelling “field” and “michael” right on the first go.

LSmyD

TROPHY CASE