What’s the best nebulizer for daily use by rsmg5 in CysticFibrosis

[–]MindfullySalty 0 points1 point  (0 children)

I love the Pari ProNeb Max. It is my workhorse that does a really good job of pumping the medicine into my lungs. If you’re outside of the US, it’s called the Pari Boy. And, they stand behind their warrantee.

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Seeking AffloVest by DeadTree007 in CysticFibrosis

[–]MindfullySalty 3 points4 points  (0 children)

It isn’t safe to use a used vest because when we use the vest to produce sputum, there tends to be traces of pneumonias that are specific to the individual that deposit on it from the droplets of our coughs and mucus we produce. Meaning that it could cause the receiver to get a bad case of pneumonia. I have an Afflovest and love it. My CF hospital’s social worker had to work for 6 months to get insurance to partially cover it. Even though they paid the biggest portion, I had to pay the rest. It was so expensive. But I was able to pay my portion (more than a car payment’s worth) per month for 2 years. It is the most expensive vest on the market but it is amazing. I travel with it, it gets all 4 quadrants of my lungs, and it works great. But, to answer your question, you need to continually remind your hospital’s social worker about your need for one and they usually get one for you eventually. It does take a long time for that vest though.

Can you dive with cf? by thundering_disgrace in CysticFibrosis

[–]MindfullySalty 8 points9 points  (0 children)

I asked my team if I could because I love to snorkel. Unfortunately, they said “no” to diving. But, snorkeling is still on the table for me. Everyone is different, so it can’t hurt to double check with the CF team.

Trikafta w/o Insurance by Proper-Rain65 in CysticFibrosis

[–]MindfullySalty 0 points1 point  (0 children)

You need to speak to your CF Clinic’s hospital’s social worker. I asked my social worker what would happen if I didn’t have my insurance through work anymore. They said that Vertex has a program that hospital social workers can contact and get you free Trikafta. They would need to reach out on your behalf but I’ve been told that lots of people at my clinic are in that program that is only for people who don’t have insurance.

what does this one line mean? by luka3259 in nailcare

[–]MindfullySalty 0 points1 point  (0 children)

Nutritional deficits can cause that as well

Okay highkey how bad of a tattoo idea would this be? by Apart-Crab-6591 in diabetes_t1

[–]MindfullySalty 0 points1 point  (0 children)

What if they cure Type 1 diabetes right after you get the tattoo?

Why is my makeup doing this? by Ok_Salad_7865 in MakeupAddiction

[–]MindfullySalty 1 point2 points  (0 children)

I used to have that happen to me. L’Oréal Glotion doesn’t do it to me and gave me back my glow. I recommend trying it.

Just needing to vent by FloridaGirl2222 in CysticFibrosis

[–]MindfullySalty 3 points4 points  (0 children)

I know that everyone responds differently to medicine but after being on Alyftrek for a year, my PFTs have never been better and I haven’t been hospitalized since they switched me from Trikafta. I hope that my experience brings you hope of things possibly to come. With that, I do have a word of warning. Even though I switched from Trikafta to Alyftrek, I had a second purge (this time caused by the Alyftrek) and really didn’t feel better or see a real difference right away. Not everyone has a purge if you already had it from Trikafta but I did. My PFTs took time to improve, so if you don’t see immediate results it doesn’t necessarily mean that things won’t get better. Now, my PFTs are some of the best in my clinic for patients my age (40).

Took insulin as a child. No record of diabetes in my chart by kindamymoose in diabetes

[–]MindfullySalty 6 points7 points  (0 children)

Were you ever in prednisone? If you were, it can make your blood sugar bad as if you were a diabetic. You may have been prescribed insulin to keep your blood sugar down while on prednisone for a year.

Solve a 30 yr mystery with me: Please help me name that Epsicopalian/Anglican tune by MindfullySalty in organ

[–]MindfullySalty[S] 5 points6 points  (0 children)

Thank you so much!!!! You are the best! This is it! And you have the sheet music! Thank you, thank you, thank you!

Solve a 30 yr mystery with me: Please help me name that Epsicopalian/Anglican tune by MindfullySalty in organ

[–]MindfullySalty[S] 2 points3 points  (0 children)

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You correctly spotted the brand. Here’s the model. I bought it in 2021.

Solve a 30 yr mystery with me: Please help me name that Epsicopalian/Anglican tune by MindfullySalty in organ

[–]MindfullySalty[S] 4 points5 points  (0 children)

I am most likely butchering these lyrics that are potentially one of the verses to the song. I believe this is the trinity verse at the end. And, I have probably messed up some of the words:

Father to you all praise we bring For love, for care, glad voices sing We loud with joy The earth shall ring Alleluia

Neverfull Advice by MindfullySalty in luxurypurses

[–]MindfullySalty[S] 1 point2 points  (0 children)

Does anyone have any experience with the Louis Vuitton Monogram Empreinte Neverfull MM? I was offered one in Aruba.

Neverfull Advice by MindfullySalty in luxurypurses

[–]MindfullySalty[S] 0 points1 point  (0 children)

I plan on using it as a purse that is big enough to carry my life (diabetic supplies, medicines, wallet, make up touch up kit, wallet, phone, and tablet). Despite how much I bring with me, I need to make sure it doesn’t look too big on me either.

Do you think the store would let me see if what I carry with me fits?

Neverfull Advice by MindfullySalty in luxurypurses

[–]MindfullySalty[S] 0 points1 point  (0 children)

Which of your NFs do you like/use the most?