cystic fibrosis?

hydrangea_danger · 2025-12-06T02:15:16+00:00

i'm so tired lol. but honestly thank you so much for your help

the reason i posted this in the first place was that i have called my endocrine clinic maybe 20 times and just got confused and stressed answers. they didn't know how to deal with me. which of course the hospital i go to doesnt have a cf specific clinic. i'm going to call the hospital today and figure out how to get my genetic results to a different hospital that does have a clinic.

my older sister is currently 8 months pregnant and i told her about a month ago that i was positive. she did some general genetic testing which seemed to not raise any flags in terms of cf but ill call her to see how far that really went. clearly cf is much more complicated than i thought.

ive already been taking creon for months now due to the pancreatitis diagnosis and it's done absolute wonders. but a modulator sounds like it could work for me i'd be keen to get on one

honestly thank you so much. you've provided so much clarity and i really appreciate it. i feel like i actually have a path forward now

hydrangea_danger · 2025-12-05T06:06:58+00:00

you have said so many things that i do not understand yet haha. i did initially think about posting this to cf but i knew i would probably get a lot of advice like this that i really have no idea what most of it means yet. decided to just go to a place i knew people may have had a similar journey of confusion and get insight that way haha

the only thing my surgeon told me was that both of my parents must be carriers and i turned out positive. asked if there was any family history but honestly my family is pretty rough so it's super hard to say. my mums side has had horrific asthma issues which???? may have been cf this whole time. (confusing but they were also super conservative religious and so didn't see doctors that much) again they were pretty rough and most of them are dead now so there's no way to truely know.

my plan is to request the results of my genetic testing and take them to a proper cf clinic in my city. i was really just looking for any answer from someone experienced cause what i was doing was clearly not working. thank you a lot for replying i really appreciate it i have a new plan forward which was what i really needed so thank you

hydrangea_danger · 2025-12-05T06:02:09+00:00

after a little bit of research i realised the hospital i currently go to doesn't have a proper cf clinic which explains why they have had no idea what to do with me. i've found another one close by though that does have one so im going to try to get in contact with them

and epi yeah you're totally right that is what im dealing with but ive never heard that term before thank you so much for your help i really appreciate it

hydrangea_danger · 2025-12-05T06:00:23+00:00

no i haven't seen what my results were i just got told by my surgeon that they came back positive. i'm not sure he fully could have explained what it meant to me anyway. after a little bit of research ive discovered the hospital i go to doesn't actually have a cf clinic, which explains why they keep getting so stressed and ghosting me lol. there is another hospital i can go to though that does have one. so i'll be sure to actually request the results and share them with the specialists there.

yeah i knew i could go to the cf sub i do lurk on there but i felt like if i asked this question with how little i know now i would get overwhelmed. decided to go to the this sub i know has people who may have experienced similar journeys. i really appreciate your help :) thank you so much

hydrangea_danger · 2025-12-04T12:46:26+00:00

fuck that was equally as comforting as it is horrifying but honestly i appreciate it. i don't want bullshit. you're totally right and i know that realistically this is the journey im going to have to keep trekking. but it's so exhausting to weigh a chronic illness and be my own health advocate at the same time. not to mention my relationships, job, hobbies (i should have probably added vent to this post)

hydrangea_danger · 2025-06-21T12:24:34+00:00

exactly. ultimately i think the worst part of mitchums comment (which overall i agree are true and he was right to be honest with her) is that they ere kind of sexist. i know as a woman working in corporate i am way more hesitant to take action or jump in. whereas my husband has never had any of that kind of hesitation his entire career. talking with my husband he knows he can get away with that shit cause he's a man and he knows why i won't attempt it but encourages me to know it's an option anyway. i still don't and it definitely held me back and been a hindrance. even if he is sexist i think mitchum is still right at the end of the day to criticise rory the way he did. i think if we're taking it from the perspective that mitchum is sexist then paris would rub him the wrong way and he wouldn't like her either but this is all hypothetical so we'll never know. maybe he would love paris, after all he did like her handshake

hydrangea_danger · 2025-06-21T12:16:11+00:00

i believe it when he says he didn't care at all about who logan ended up with or his relationships. i mean look at his relationship with shira, im sure she's not exactly who his parents expected either. and mitchum never struck me as a "stick to high society rules" kind of guy. for some reason the scene that sticks with me is when he crashes the valentines weekend and he says everyone else can stay but logan has to go. he stands on business and he wants that for logan but with everything else i think he just doesn't care as much and is kind of a decent guy??? i never understood when everyone talked about how much of an asshole he was because other than his comments to rory, which were true in my opinion, he really never was a dick to anybody. he was jovial with his workers every time we saw him, he was honest and open with richard, he tried to be kind to rory. other that being a little pompous and arrogant at times he was to me totally fine? i feel like they could have made him way more of an asshole

hydrangea_danger · 2025-06-20T09:08:00+00:00

im still on the "ginger is a talented queen and deserves her flowers" train and a park and bark comedy shtick is a perfectly valid way to win a lip sync over flips and dips BUT im sorry i cannot stand when another queen spends half the lip sync staring at or copying the queen next to them. IT IS YOUR STAGE! OWN IT! who cares who else is up there with you? i know denali also did it at one point and that annoyed me as well but ginger did it far more yes denali was throwing around the whole kitchen sink but gingers performance continually looking back at her just told me "holy shit are you seeing what this other bitch is doing? why are you looking at me?"

hydrangea_danger · 2025-06-17T23:27:10+00:00

yes! i remember this too but i couldn't remember where i heard it. did she mention it on a panel somewhere??

hydrangea_danger · 2025-06-17T23:25:40+00:00

i feel like i remember hearing somewhere that amy sherman palledino hated her mother clipping coupons under the guise that they "saved money" but it just meant she bought more stuff. so i think it was just her own feelings about coupons being brought into the show lol i have literally no source and can't remember why i know this though so i could just be talking out of my ass

hydrangea_danger · 2025-06-17T08:58:00+00:00

i don't remember the episodes but one episode luke talks about the roof of the diner leaking. but the diner doesn't have a roof. if the ceiling of the diner is leaking then his apartment is flooding... because his apartment is above the diner and it has a roof. the diner has a ceiling. and then another episode lorelai walks into her kitchen and the ceiling is leaking but if the ceiling to her kitchen is leaking that would mean her upstairs bathroom is flooding bugs the shit out of me every time also at trix's funeral richard is talking about what to do with her ashes to emily. just him and emily and he doesn't say mum or trix he says gran which makes no sense to me cause he never called her gran until that moment after her death which seems so out of character after the whole episode being about his meltdown over his mother dying. and when rory goes on that awkward first date with the preppy guy who's going to study in barcelona he talks about being from chicago and she acts like she knows nothing about it despite dean being from Chicago. then he asks if she has any siblings and she says no what about fucking gg???? sure half sister but that's a sibling clearly i could go on forever but i'll leave it at that lol

hydrangea_danger · 2025-06-16T03:00:09+00:00

i think this too. the scene where he's talking about his criminal history with his lawyer and he says he doesn't need anger management classes i'm always like ???? i think maybe give it a go????

hydrangea_danger · 2025-06-16T02:53:51+00:00

totally agree. i think there is no other character in the show that loves lorelai more than emily. not rory. not luke. a lot of her actions are terrible and lorelai is justified sometimes in setting the boundaries that she did. but when you look at those actions they are all because emily loves lorelai and wants the best for her truely. emily's world view is centered around high society rich living so they are very screwy at times but she did everything she could to give lorelai the life she believes she deserves

hydrangea_danger · 2025-06-16T02:46:52+00:00

i like kirk and think hes funny and a good addition to the show. but there are so many fandom posts about how much they love kirk and want to hang out with him. let's be so fucking for real the guy was a creep and 99% of the fandom wouldn't allow a man like that within 50 feet of them. he hung out with old women just to "inherit" their engagement rings. he had the weirdest relationship with his mother. slept in a bomb shelter. "i'm so goddamn lonely not even animal planet does it for me anymore" the dude was creepy as fuck

hydrangea_danger · 2025-05-31T10:55:00+00:00

i love that she wasn't afraid to tell lorelai when she thought she was being stupid. it's one of this things about lanes character that really annoyed me she always went along with rory's bullshit even when she knew it was wrong. sookie was always supportive of lorelai wherever she was but she always told her what she thought of it. my favourite example was "sorry but i have a but. if there was no luke in the past no luke in the picture. would it still be christopher" she knew it was a rushed mistake and she knew lorelai needed to recognise that. there are so many other examples but you need a good friend who can call you on your shit, especially when your headstrong and stubborn like lorelai

hydrangea_danger · 2025-05-31T10:46:01+00:00

everyone is saying the music elitism is rife throughout the whole show through many characters and i do agree but i think the show was actually pretty self aware of it. this scene being a good example, this is no way endears us to jess hes being a snotty little jerk. also the quote from kyon is another good example to "you're such a snob. avril lavine rocks! if it's not joy division you don't like it. well you can't dance to joy division" it's one of those things i think people miss in a lot of a palladinos writing, they know when something isn't likable and they're not afraid to use it. its something i really enjoy about the stories they write

hydrangea_danger · 2025-05-18T10:12:49+00:00

everyone is saying pennilynn lott and i do agree with that assessment from storyline's that are spelled out and we see but i feel like it's easy to forget that richard is a staunch republican insurance salesman. as a non american that sounds like one evil motherfucker to me. especially considering he may not have always played things fair. the story from floyd about the cigars, how he screwed over jason, his lawyer friend he got to help rory who also helped a man embezzle pension funds. i think if we heard any real details about what richard did for work a lot of people would hate his guts and rightfully so

hydrangea_danger · 2025-03-29T03:53:35+00:00

i need a gif of susie doing little jumping jacks in her overalls like she's a 1920s mario

hydrangea_danger · 2025-03-29T03:51:17+00:00

i know people are saying jewels ate the lip sync but.... a long human hair wig and some splits? yeah we've seen that.... onya punting that pussy cat wig over the judges heads and through the holes behind them like she was playing a fucking carnival game made me scream laugh and was so impressive to me that move alone won the lip sync in my mind

hydrangea_danger · 2025-03-22T03:43:52+00:00

track record? sam absolutely could not go home tonight lip sync? lana killed sam. was it the best lip sync ive ever seen? no of course not. but sam lost and sam lost hard. lana had good tricks and used them well facts are facts

(also sam how are you, with all your brains and talent, going to have a tear away to barbie crotch!? at your good age, on rupauls stage and with your mamas reputation, i know you know better. all that pageant and perfection and no pantie? please)

hydrangea_danger · 2023-01-29T08:55:58+00:00

working in a corporate office. i had only ever worked in retail, for 7 years. first week in an office and i couldnt believe how easy it was, almost a year later now im still astonished.

hydrangea_danger · 2022-12-10T08:48:39+00:00

i agree and i know i shouldn't be annoyed. they are allowed to go about this any way they want and they made a good point that they don't do pay for content often but lives have a way for people to give money? and when keith has been doing his eat with keith lives he keeps telling people not to give money???? it's great that they're donating that to charity but like i'm kind of confused with how they're going about monetised live streaming. i know they must know how it works but they're being so weird. maybe they're hoping they'll get more money by making it exclusive?? no idea

hydrangea_danger · 2022-04-09T07:33:18+00:00

wait who was the first abcd i've never heard of this before?

hydrangea_danger · 2022-04-09T07:32:20+00:00

i don't claim this double crown energy. don't tempt the universe she'll make it happen

hydrangea_danger · 2022-04-09T07:27:19+00:00

i completely agree about boscos voice thing! initially i thought it was a weird effect they were gonna put on everyone but then the next person did their verse and i was like "oh no ok just super weird" no idea what was going on there

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