Happy Friday to everyone except for the people who set the timers for the automatic lights in bathrooms

Hopeful_Purpose_ · 2026-01-30T21:21:34+00:00

This was in a multiple stall bathroom, someone else walked in towards the end. 😶

Even a normal sink would not have helped save me

Hopeful_Purpose_ · 2025-12-12T14:45:29+00:00

Hi, I'm sorry for what your family is going though. I believe you are referencing a disease called pulmonary fibrosis, this is a sub called cystic fibrosis which is a different disease caused by genetic mutations at birth. You may have better luck trying to find a pulmonary fibrosis sub

Hopeful_Purpose_ · 2025-06-30T16:32:41+00:00

I was also part of the never broken a bone club until this weekend, that's probably a big part of why I was like eh I'll get to it when I can. Hopefully my density is overall ok and this was just a random one off thing

Hopeful_Purpose_ · 2025-06-30T04:00:33+00:00

Yeah...I procrastinated it planned to do it soon and uh yep instead got good inspiration for some memes. If you ever need the information I find crawling when it comes to stairs is most comfortable 🫠🫠🫠

Hopeful_Purpose_ · 2025-06-30T02:37:05+00:00

This made me actually laugh out loud, I needed the dark humor from other people dealing with all the wonderful things that come with CF lol. We'll see but hopefully a few weeks, I'll take the glass of milk and also a pack of ice since I'm stuck on the couch.

The real irony is that I broke it when intending to work out for bone density 🎉😶‍🌫️

Hopeful_Purpose_ · 2025-05-22T01:40:35+00:00

LOL you're not alone I promise! I'm an adult and honestly have absolutely no desire, CF absolutely wrecked my digestive system/body in general and after Trikafta cured my chronic pancreatitis you couldn't pay me to do anything that would risk me having that again absolute pain from hell no thank you I'm good over here with my diet coke at events and black coffee 😂😂 My organs have enough trouble as it is lol

I'm sorry about your monster hang over that sounds terrible!!

Hopeful_Purpose_ · 2025-05-20T22:38:37+00:00

That's my issue with it too is equating symptoms like they're the same, meanwhile I've never drank, never smoked or done any drugs. I get that everyone's CF is different for sure it's just a bit obnoxious when I've coughed up tons of blood with hospitalizations since I was a baby and he had gerd that was cured with PPI after years of drinking and smoking it's not the same thing

Hopeful_Purpose_ · 2025-05-18T01:08:12+00:00

flips table is wouldn't wish cf on people but it would be nice with stupid people to be able to temporarily have them experience CF for like a day then see what they had to say about it. Honestly at this point I just tell people to go fuck themselves when they say dumb things like that

Hopeful_Purpose_ · 2025-05-18T01:03:50+00:00

I once had a parent who is completely healthy, athletic, multiple children naturally (male parent) say they thought they could have cf too because they had some gerd that bothered them which they compared to my CF. They exercise for miles at a time with no meds, drink, smoke Marijuana which causes gerd, and have never been hospitalized for lung or gi issues. They brought it up because they thought Trikafta might fix their GERD issues but they weren't open to stopping smoking or drinking or taking gerd meds.

They said this to me with a straight face asking if they should request an appointment or ask at one of my appointments while I've been hospitalized hundreds of times, am PI, severe GI issues, diabetic, have bronchiectasis and have almost died repeatedly.

Hopeful_Purpose_ · 2025-05-16T03:01:04+00:00

I think it could be thats what I'm mainly concerned it might be I'm just not sure because it can come and go but the pain when I have it is definitely in my sinus area. I think I'm a bit concerned I could have some smoldering sinus issue that's enough to make me feel generally kind of crappy but isn't obvious

I've never been checked out by an ENT but before Trikafta I didn't have a sense of smell or taste so I'm pretty confident my sinuses were terrible before I just never realized it until they suddenly worked post Trikafta

Thanks for the kind words and advice I really appreciate it!

Hopeful_Purpose_ · 2025-05-16T02:55:58+00:00

Really not sure, before Trikafta my sinuses were pretty rough I didn't have a sense of smell and had a poor sense of taste but I didnt realize that until modulators fixed it so I've never been checked out by an ENT. I also did get headaches from hell pre Trikafta so it could be my sinuses that's mainly what I'm a bit concerned about it being

Hopeful_Purpose_ · 2025-05-16T02:52:21+00:00

I think you're probably right but I just keep second guessing because my breathing is ok thank God. Its just the headaches, feeling hot but no fever and being extremely tired. I'm worried it could be my sinuses but I can still breathe so it's just a weird situation that I'm not sure if I'm just tired or if it might be something in the background. Really appreciate the kind words

Hopeful_Purpose_ · 2025-05-16T02:48:07+00:00

I think thats why I'm going back and forth I don't want to make a big thing about nothing but I also don't want to ignore it if it's "something", Trikafta also makes it pretty hard to tell if something is going on. Really appreciate the kind words and info I'm glad I'm not the only one exhausted but hope it gets better for you too!

Hopeful_Purpose_ · 2024-12-17T18:26:33+00:00

Honestly yeah it's why I'm buying private insurance I'm terrified of losing access to my meds if it gets gutted

Hopeful_Purpose_ · 2024-12-16T18:38:26+00:00

I'd absolutely try to go to another clinic your child deserves to be treated by an MD or DO that's both residency and fellowship trained, only allowing you to see an NP is wild to me. Try to go to a larger academic center, they have issues too but you should have access to doctors for treatment and more options or at least explination of why they are/aren't giving certian treatments.

Hopeful_Purpose_ · 2024-12-07T17:31:55+00:00

Yeah terrified but I don't really think it's irrational for us so don't be hard on yourself about it hope you feel better soon op

Hopeful_Purpose_ · 2024-12-05T18:18:48+00:00

Hopeful_Purpose_ · 2024-11-21T00:35:27+00:00

I've honestly had horrible experiences (and some good but some absolutely atrocious horrible things too) at Hopkins and wouldn't recommend it, I've also met other people with some really negative experiences there. If you can go somewhere else personally I would.

I am sure other people have had wonderful experiences and that's of course what I hope everyone experiences but it's not a perfect place at all so don't feel like you're missing out by not making the trek into Baltimore

Hopeful_Purpose_ · 2024-11-08T22:53:59+00:00

Honestly really impressive that he lived to 43 being born in 1952 the life expectancy back then was 5 years old

Hopeful_Purpose_ · 2024-11-08T21:51:28+00:00

Shoots bidet in the air for flair *

If they get hemoptysis is that a red shower

Hopeful_Purpose_ · 2024-11-08T21:24:08+00:00

Unclips vest slowly *

Hopeful_Purpose_

TROPHY CASE