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Rusty replied to the topic The secret of life in the forum Adults With Cystic Fibrosis 1 year, 9 months ago
Happy Birthday Jenny! I had a birthday yesterday, my fellow Virgo.
There are tons of “secrets to life” so I will share one from a man named Charlie Munger, Warren Buffets’ brilliant right-hand man. Sometime after a birthday of his – he is in his nineties – he told the audience in an annual meeting to never put off until you are 93 what you c…[Read more]
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Rusty replied to the topic I'm Stressed…. CDs? Albums? in the forum Adults With Cystic Fibrosis 1 year, 11 months ago
You know what? I don’t really have a go to album but over the covid winter I decided to listen to Puddles Pity Party and was glad I did. He has many youtube videos and, aside from having an amazing singing voice, he is very entertaining to watch. My favorite one is his version of Sound of Silence.
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Rusty replied to the topic Surgery and a small Trikafta update in the forum Adults With Cystic Fibrosis 2 years ago
Hi all,
Glad to hear you had a good surgical outcome. I have been fortunate not to have needed sinus work done. I have been told by one doc that my sinuses were not real healthy and a non-CFer would probably be seeking a remedy but he speculated that a person with CF might have a higher threshold for what it would take to think sinuses needed…[Read more] -
Rusty replied to the topic Salty Snacks and CF: Confession Time in the forum Adults With Cystic Fibrosis 2 years, 1 month ago
I like to add salt to beef and chicken. And pour olive oil on vegetables so salt will stick to them. To avoid the carbs of potato chips but still have something salty and crunchy I have learned to like pork rinds.
I have found that kosher salt has a saltier taste than regular table salt so I use that at the table. I haven’t tried salt flakes…[Read more] -
Rusty replied to the topic Stinky Cheese (High Fat Snack Chat) in the forum Adults With Cystic Fibrosis 2 years, 1 month ago
I also like to choose cheese. Additionally, a great big spoonful of peanut butter or almond butter is a favorite and goes well with a piece of chocolate. In a pinch, I will mix whey protein powder in water and dump in a generous amount of heavy cream. Isn’t fat just wonderful?
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Rusty replied to the topic Worsening reactive hypoglycemia in the forum Adults With Cystic Fibrosis 2 years, 2 months ago
I have seen some pretty low sugar readings since starting Trikafta. I had been taking a small dose of repaglinide with my biggest meal for many years now and have had no problems until post-Trikafta. I mentioned this to my endocrine doc and she prescribed a lower dose – the lowest available – and so far this has helped quite a bit. She…[Read more]
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Rusty replied to the topic Realistic Morning Routines versus Ideal in the forum Adults With Cystic Fibrosis 2 years, 2 months ago
First off, I feed the cats. They are my alarm clock and when they wake me up there is no snooze button. They mean business! Next, I down a few morning pills while I make a cup of tea. When the tea is ready I’m off to the basement for airway clearance punctuated by sips of tea. Back upstairs I clean the litter box and make breakfast and peruse…[Read more]
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Rusty replied to the topic Need Anxiety Relief (TV Recs?) in the forum Adults With Cystic Fibrosis 2 years, 3 months ago
Episodes of “Finding Your Roots” are very interesting.
For guilty, mindless pleasure there is “Schitt’s Creek”. -
Rusty replied to the topic Clinical research, breakthroughs, and new horizons… in the forum CF Science and Research 2 years, 3 months ago
Oops, a couple more changes/improvements. The use of Cayston every other month is a boon. No more painful artery sticks to get a blood gas – just put out your finger for a quick pulse oximetry. No more being paired with another CF patient when hospitalized. Getting a flutter valve to help with airway clearance. (I have never used the vest but…[Read more]
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Rusty replied to the topic Clinical research, breakthroughs, and new horizons… in the forum CF Science and Research 2 years, 3 months ago
Where do I begin? As a 64 year old person with CF I have seen many treatment options change, some good and some bad. The bad would be many of the antibiotics that used to be effective no longer are. The good, indeed the best, have been the CFTR modulators. I used to work in a major medical college hospital that is also a CFF center and as such…[Read more]
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Rusty, I think it’s just so amazing you are living and thriving at 64 with CF. I interviewed one of our forum friends, Judy Moreland, a couple of months ago about her life with CF in her 70’s, and aimed to put it in a column, but am yet to do so (mostly busy weeks and distractive topics. But I do plan to soon!) So this is just amazing, refreshing,…[Read more]
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Rusty replied to the topic CF… a reason or an excuse? in the forum Adults With Cystic Fibrosis 2 years, 3 months ago
I read one person’s thought about reason vs. excuse. He said a reason is factual and an excuse is just a rationalization. If you are in a body cast you have a reason why you cannot work out. If you just don’t want to work out you might talk yourself into some kind of excuse to use. The thing about this is it is up to you to determine which one…[Read more]
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Rusty replied to the topic I'm Too Young For Drugstore Vaccines in the forum Coronavirus (COVID-19) and CF 2 years, 3 months ago
Are people 65 and older getting prioritized because they are high risk? Of course. So what makes their high risk “better” than the high risk of something like CF? I do not begrudge the 65 or older crowd for being eligible ahead of someone with CF or some other condition that makes them high risk, I just wonder how the distinction is being made.…[Read more]
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Rusty replied to the topic A little bit of exciting news… in the forum Coronavirus (COVID-19) and CF 2 years, 4 months ago
Congratulations! I hope the vaccine pipeline starts to open up a little wider soon. Mostly all I hear about are delays and shortages. Also, it is a bit disheartening that some people are declining to get the shot. I just hope it is due to valid reasons rather than misinformation or mistrust.
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Rusty replied to the topic My Personality Is My Worst Symptom in the forum Adults With Cystic Fibrosis 2 years, 4 months ago
Hi All,
More psychology. I will start with this quote that comes from an author named David on the website Raptitude:
“The real pain of many tasks is psychological, arising from the way the mind processes them, not so much from the actions that constitute the tasks themselves. The general rule seems to be this: the more abstract we make an…[Read more] -
Rusty replied to the topic CF and alcohol consumption in the forum Adults With Cystic Fibrosis 2 years, 4 months ago
Hi All,
I read somewhere that Alton Brown will add a bit of salt to coffee to reduce bitterness. I tried it and it did seem to make the cup a little “smoother”. I would only do that to bitter coffee which I don’t tend to buy. As for me, coffee never seemed to be a problem. Two cups a day. I believe the diuretic effect is more than offset by…[Read more] -
Rusty replied to the topic 2020 Word Challenge in the forum Adults With Cystic Fibrosis 2 years, 5 months ago
Nonirregardless. Everything that happened this year happened nonirregardless of how we feel about it. Kind of like all of life. That, Jenny, is my perspective.
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Rusty replied to the topic Is Consistency Really The Key? in the forum Adults With Cystic Fibrosis 2 years, 6 months ago
“Anything worth doing is worth doing poorly.” Ha! I remember my brother saying this about 30 years ago and it is so true. I think a key to maintaining exercise is to just get started. Trying to hold yourself to a strict routine may actually have the adverse effect of you doing nothing on days you just don’t feel into it. Instead, tell you…[Read more]
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Rusty replied to the topic CFTR modulators and fatty foods in the forum Adults With Cystic Fibrosis 2 years, 6 months ago
I was not given specifics about just how much fat must be taken with each dose, only to take it with some fat. I just looked up the prescribing information from the Trikafta website and it says, “TRIKAFTA should be taken with fat-containing food. Examples of meals or snacks that contain fat are those prepared with butter or oils or those…[Read more]
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Rusty replied to the topic CFTR modulators and fatty foods in the forum Adults With Cystic Fibrosis 2 years, 6 months ago
I have not been told to take a specific amount of fat, only that fat must be taken with the modulators. I love fat. I usually use cheese or full-fat Greek yogurt. I am always willing to add liberal amounts of butter or extra virgin olive oil to many things, especially vegetables. I have no limits to the amount of fat I am willing to consume so…[Read more]
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Rusty became a registered member 2 years, 6 months ago
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Hello, Rusty! Welcome to the forums! I’m Jenny, one of the moderators here along with my friend Bailey. We strive to make the forums a fun, informational, supportive space. If you need help with anything or there is something specific you’d like to chat about, please feel free to reach out to either one of us. We are both happy to help and so glad…[Read more]
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Ooh, and peanuts have a lot of healthy protein and fat too! Do you generally try to eat more high fat, high protein, low carb, or is it just whatever feels best in the moment? (I love talking nutrition strategies and preferences, so forgive the nosy-ness!)