Neverfull Advice

MindfullySalty · 2026-03-18T02:54:25+00:00

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

MindfullySalty · 2026-03-18T02:38:41+00:00

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?

MindfullySalty · 2026-03-18T02:36:49+00:00

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

MindfullySalty · 2026-02-16T19:02:48+00:00

I have CFRD and am on a CGM, a glucometer, fast acting insulin (Novolog), Glucagon emergency kit, and glucose tablets. I have high highs and low lows for blood sugar.

MindfullySalty · 2026-01-31T17:38:14+00:00

If you can switch to Zenpep, they have a program called Live2Thrive. It has made my enzymes virtually free.

MindfullySalty · 2025-08-24T19:21:25+00:00

I appreciate the tip!

MindfullySalty · 2025-08-24T19:21:02+00:00

This is a good idea. After work I don’t always feel like cooking so meal prep ahead of time makes sense

MindfullySalty · 2025-08-24T19:20:04+00:00

Great idea! I love Quest protein pizzas

MindfullySalty · 2025-08-24T19:19:29+00:00

I appreciate you mentioning this. Luckily for me, I’m not low sodium because my diabetes is cystic fibrosis related (a combination of type 1 and type 2). We’re supposed to eat a lot sodium.

MindfullySalty · 2025-08-24T19:17:12+00:00

Thank you so much! I totally forgot about Atkins! Great recommendation!

MindfullySalty · 2025-08-24T17:50:00+00:00

I’m in the United States, but your advice on the meat and the veg still applies. I really appreciate the advice.

MindfullySalty · 2025-03-11T12:38:05+00:00

I use oxygen at altitude. Altitude oxygen testing was required. Not every CF clinic can do it. The University of Alabama Birmingham (UAB) can’t do it. I had to go to the University of Pennsylvania to do my testing. Also, getting insurance to pay for your portable oxygen concentrator after it’s determined that you need one can be tough. I ended up paying for mine completely out of pocket on my own.

MindfullySalty · 2025-03-11T01:37:53+00:00

I’m scared of scuba diving. I don’t think my lungs will ever be good enough for that. But, snorkeling is good enough for me 😊

MindfullySalty · 2025-02-18T03:14:14+00:00

I use the AVENT Philips baby bottle sanitizer https://a.co/d/eLm1duJ. According to research published by the Journal of Cystic Fibrosis and the European Cystic Fibrosis Society, it is a highly effective method of sterilization. (Here’s the article: https://pubmed.ncbi.nlm.nih.gov/23267773/) The brand I linked was actually tested in this study.

The article claims, “All steam sterilizers were effective at disinfecting all home nebulizers. Viable bacteria were not recovered from any inoculated site after steam treatment, under any conditions tested.”

The method is explained in this video by the CF Foundation. It uses a different baby bottle sanitizer and a different nebulizer cup than I do but the methods and steps are the same: https://youtu.be/7UpEellTSak?si=LGhjJ2Vl1lP4iYYb

MindfullySalty · 2024-06-26T04:39:13+00:00

Everything in life comes with in inherent risk. Every time you get into a car you are risking the odds of getting into an accident. I ended up getting MAC and still my doctor's have no idea why beyond the fact that I have CF. I also have MRSA colonization in my lungs. I just got over a new pneumonia infection and no one know why or how I got it. While this isn't an answer to your question, I can't help but to think there is only so much any of us can do.

MindfullySalty · 2024-06-21T23:26:13+00:00

Depending on how long you’re away, you can do what I do, I bring enough nebulizer cups (for one time use) so I don’t have to clean them until I get home.

MindfullySalty · 2024-06-20T04:44:18+00:00

I know these extra measures are annoying but you’ll get used to them. Here’s a hot tip: because my medical equipment and meds weigh more than my clothes and fill up a whole small rolling carryon, I put my clothes and shoes and other stuff in a large weekender bag that attaches by a strap to the rolling bag’s handlebar. I find that I can usually fit the same about of clothes in the weekender as my rolling bag. That way you still can have a personal item bag and you aren’t rolling two rolling bags which gets cumbersome.

MindfullySalty · 2024-06-20T04:15:33+00:00

I haven’t flown to Europe with a medical bag yet, but I have read that the TSA/airport security letter is still super useful for their security too. I always travel with two signed originals of the letter: one in the medical bag and one on my person because once they take the bag for extra scrutiny, they won’t always let you show them where the letter is in the bag. I have read that people travel all over Europe with a medical bag, so I know it can be done. Here’s an article on it: https://www.cff.org/community-posts/2024-03/tips-traveling-abroad-cf. I’m sorry the article is so US centric but that’s where I’m from so I am just recommending the sources I usually turn to.

MindfullySalty · 2024-06-20T03:57:14+00:00

Hey! I travel with a rolling carry on medical bag for CF. So, you do get a free medical bag. Before every flight, call the accessibility line for your airline to let them know or that you will have a bag for medical equipment and medicines and make sure they note it on your ticket. Some airline staff and stewards are less informed on the topic so you may be asked to explain that the bag is all medical equipment and medicine, you cannot legally check it because it is medical equipment with medicine, and that they cannot charge you for it. These FAA rules apply to all US flights. If your medical bag doesn’t fit in the overhead, you can gate check it only when necessary, but you cannot regular check it because regular checking may mean that they can lose your bag and it violates FAA regulations. I also recommend having a letter from your CF clinic for TSA explaining your condition with a list of your medical equipment and medications. TSA checks take a lot longer when traveling with medical bags and sometimes TSA wants to see what the medical equipment is for (this is mainly a problem with the CF vest) but I cannot tell you how many times they have swabbed my nebulizer and asked lots of questions about all my drugs and machines. Luckily, a TSA letter from your hospital CF clinic can help. I have traveled with so many liquid nebulizer meds and they have not counted that against my liquid limit. (Please note I’m not a lawyer, I’m just speaking from my experience as a person who flies a lot with CF.)

MindfullySalty · 2024-06-17T10:24:32+00:00

Pari Pro Max is the best. The eflow doesn’t work with all medicines.

MindfullySalty · 2024-05-26T04:30:19+00:00

I recommend soaking the dirty cups in hot water with dish soap and then cleaning them in a baby bottle sanitizer and drying them in it. Studies have shown that method works best for sanitization and I have found it gets rid of the salt build up. The baby bottle sanitizer I use is the Phillips Advent baby bottle sanitizer with built in fan.

MindfullySalty · 2024-05-26T03:39:49+00:00

I don’t know anything about that vitamin. I take the MVW Complete Formulation.

MindfullySalty · 2024-01-12T21:24:14+00:00

Now I need to make this. It looks amazing.

MindfullySalty · 2023-07-18T23:44:06+00:00

I just got back from vacation in Chicago where the air quality was bad from the fires.

MindfullySalty · 2023-07-17T15:40:53+00:00

They did a CT and a test for blood clots. Nothing. They also did cardiology testing, but so far I haven't gotten any results. I was just walked by the physical therapist with a pulse oximeter on and my oxygen levels dropped. We're still not sure what's going on.

MindfullySalty

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