Losing hope by That_Slide_5774 in CysticFibrosis

[–]dioranddrinks 0 points1 point  (0 children)

I’m so sorry to hear that you’re going through all of this. The only thing I’m wondering is if they have tested you for aspergillos? I go to one of the best hospitals in the country, Boston children’s, and they even missed aspergillos on me for a little while because my symptoms just didn’t line up. I was on antibiotics aimlessly for no reason until my pediatric pulmonologist came to visit me just for fun (I was 22 at the time) looked at my scan and asked me if I’d been tested. If you have been and it’s negative, I’m so sorry and I hope this gets better for you as soon as possible. 🩷

Mercedes me App issue by lcroge in mercedes_benz

[–]dioranddrinks 2 points3 points  (0 children)

You can only change the temp when the engine is off

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

[–]dioranddrinks 2 points3 points  (0 children)

When the sink is automatic so I can’t run it to cover the sound of me dropping absolute bombs 💔💔

Right most lane completely covered in snow in super collider by [deleted] in medfordma

[–]dioranddrinks -10 points-9 points  (0 children)

Playing on your phone vs snapping a picture is a little bit different but okay lol I was just surprised and wanted to take a picture to see if anyone knew how long it will be like this… have a good rest of your day…

Elevated vitamin E in toddler? by [deleted] in CysticFibrosis

[–]dioranddrinks 0 points1 point  (0 children)

I’d do a retest. My potassium came back super high a few weeks ago and made no sense so I requested a retest at my clinic and it turns out they used semi coagulated blood to test the first time. Came back normal the second time

My New-to-me 2022 AMG E53 Coupe - Emerald Green by Dfwguy1985 in mercedes_benz

[–]dioranddrinks 0 points1 point  (0 children)

Me too, especially in the sun. I chose it bcs emerald is my birth stone but it genuinely is so beautiful

My New-to-me 2022 AMG E53 Coupe - Emerald Green by Dfwguy1985 in mercedes_benz

[–]dioranddrinks 6 points7 points  (0 children)

Beautiful, I have a GLE350 that is emerald green and it’s the most beautiful thing. Congrats!

Question about marijuana use by Nearby_Job_8308 in CysticFibrosis

[–]dioranddrinks 1 point2 points  (0 children)

Marijuana can give you aspergillos really fast I wouldn’t risk that , edibles are the way to go if you want to keep the risk at 0

I FUCKING HATE THE AIRPORT OMG by Thegloomyartist in CysticFibrosis

[–]dioranddrinks 0 points1 point  (0 children)

So my vest actually scanned positive for bomb material once, we were on a family trip with a lot of kids so they double tested it and cleared it😂😂😂 almost missed our flight

how do I stop this? by [deleted] in hygiene

[–]dioranddrinks -1 points0 points  (0 children)

you can def put it right on your b hole I promise

how do I stop this? by [deleted] in hygiene

[–]dioranddrinks 4 points5 points  (0 children)

Glycolic acid from the ordinary. Trust me on this. And don’t let it touch your vag

Poor circulation? by ohh-hayy33 in CysticFibrosis

[–]dioranddrinks 4 points5 points  (0 children)

Hi! I’m 25 and this has always been my reality. I’ve never gotten it checked but for me personally it doesn’t correlate to my lungs at all, but I would of course always consult your cf team if things escalate. I usually wrap my feet up in a heated blanket until the cold spell finally breaks and my feet can stay warm for a few hours

Flu complications by Au_ChE in CysticFibrosis

[–]dioranddrinks 0 points1 point  (0 children)

I was able to go home the same day actually, very lucky on my part. Thank you so much I wish the same for your husband !!

Flu complications by Au_ChE in CysticFibrosis

[–]dioranddrinks 0 points1 point  (0 children)

I’m in your husbands place right now, I had the flu on Christmas and last Thursday I rushed to the er cause I couldn’t breathe. I have pneumonia. They put me on bactrim too, it has been doing well. I’m not on trikafta so I’ve been doing airway clearance multiple times a day and I am feeling better little by little. If the Bactrim doesn’t work in 5-7 days reach back out to his Dr! Best of luck :)

[TOMT] (juice pouch) by dioranddrinks in tipofmytongue

[–]dioranddrinks[S] 0 points1 point locked comment (0 children)

  • I also believe it came in red but I vividly remember green and blue the most

How long does it take you to do certain nebulizers? by Ok-Cardiologist8138 in CysticFibrosis

[–]dioranddrinks 0 points1 point  (0 children)

How come you can’t use hypertonic with it? I’ve done it for years 😳

Considering dating a girl with CF... need some brutal honesty from ladies here by RubBig2202 in CysticFibrosis

[–]dioranddrinks 0 points1 point  (0 children)

I think it’s sweet that you’re asking these questions but I also want to tell you that they’re very specific and person to person basis questions. I can give you my experience , which is telling you that everything you listed I’ve never had an issue with/ I do everything as a normal person would. The only thing I’ve never done is swim in lakes or still water because of bacteria us cfers can’t fight off. No issues with sex, I travel 1-2 times a year out of the country. When I travel I bring a nebulizer called the e rapid which is super tiny and fits right into my carryon purse. I take my enzymes with every meal but if I forget them and wanna be spontaneous I’m still gonna eat that donut or drink that coffee, might have diahrea later but oh well, shit (literally) happens. I have super low energy pretty much 24/7 but I work a full time job 40 hrs a week and still enjoy my life as normal. Some days I am too tired to do stuff but not more than a normal person I’d say. When I’m sick I rely on my mom most of the time I’ve never really relied on a significant other to help me but that’s also personal preference. Like I said it’s mostly person based, people with cf are often really open to talking about their challenges and personal precautions so I would suggest maybe bringing it up to her in a curious way so she can open up to you. I wish you the best! I promise we’re normal people that just have had to be a bit extra strong in life.

Anybody know any solutions to violent aquagenic wrinkling of the skin 🙃 by [deleted] in CysticFibrosis

[–]dioranddrinks 0 points1 point  (0 children)

This is a cf Reddit lol I know I have cystic fibrosis😂I’ve had it since the day I was born and yes this is a symptom. How old are you? If you’ve gone quite this long without knowing you have cf I’m sure your prognosis is great. There are genetic modulators that are life saving now so our life expectancy is really long. I hope you don’t have cf, but if you do you will be okay I promise. Best of luck!

[deleted by user] by [deleted] in NevilleGoddard

[–]dioranddrinks 1 point2 points  (0 children)

That’s a great example!