4 ms·

That was really interesting, thanks for writing all that out! Given this sort of knowledge and understanding, what do you do about your CF then? Is there a way

That was really interesting, thanks for writing all that out! Given this sort of knowledge and understanding, what do you do about your CF then? Is there a way to prevent your body from being so acidic, or to mitigate the effects of it?

DoreenMichele 6y ago
The short answer is "I've made a lot of dietary and lifestyle changes." I eat very carefully with an eye towards food chemistry. If you have no idea I have CF and I do this, you wouldn't notice that I eat any differently from anyone else. For example, pizza is a staple part of my diet. But I mostly get takeout pizza from Little Caesar's. They are the only national franchise that makes their dough fresh in house daily. Everyone else ships it in from elsewhere in frozen form. They also use corn meal to help make it not stick. This was something I did when I used to make homemade pizza with a pizza stone. The corn meal is more alkaline than wheat. Most wheat only crusts leave me too acid, but Little Caesar's pizza doesn't because of the addition of a small amount of corn meal to the crust. I also avoid certain oils. It is well established that people with CF misprocess oils and I got very interested in the chemistry of oils. They come in three forms: long chain triglycerides, short chain triglycerides and medium chain triglycerides. Medium chain triglycerides also get called MCT oil and it has long been established that MCT oil is medically beneficial for CF and certain other conditions. This is the basis for why coconut oil is popular in some circles: it is high in MCTs. MCT oil has long been prescribed by doctors to people with CF and coconut oil has an even longer history of being medically prescribed for various gut issues, including stomach cancer (though I can no longer find the link supporting that statement, sadly). I not only favor MCT oils, including butter which is a good source of such, I actively avoid long chain triglycerides because my body fails to break them down and it wreaks havoc and makes me really sick. So I avoid peanut oil, canola oil and some other things. I am a butter fiend and I tolerate animal fats well, such as bacon (though bacon is high in something that is hard on the lungs and I had to be careful with it when my lungs were in worse shape). So I pay a lot of attention to food chemistry and I do eat what other people see as "junk food" but one brand of potato chips is perfectly fine because they cook with oils I tolerate well and another makes me dog sick because they use different oils. If you don't know that, you see me eating pizza and potato chips and don't think I'm some kind of super extreme "health food nut" though I am. I also am very careful about what I touch. Skin is epithelial tissue and people with CF are prone to aquagenic wrinkling -- aka we get extremely pruney in bath water. This is so extreme that they are now using it a cheap initial screening in rural clinics in India. I've actually already written about the skin stuff so let me give a link rather than repeat myself on too little sleep and yadda: https://atypicalcysticfibrosis.blogspot.com/2020/01/skin-and-cf.html https://atypicalcysticfibrosis.blogspot.com/2020/01/skin-and... That even has a link to the PDF about the test they are developing (or have developed) in India for rural clinics. I spent a long time taking $300/month worth of supplements. I now manage my condition with diet and lifestyle and I am mostly well, having resolved that backlog of malnourishment, chemical derangement, accumulated infections, etc etc. I'm trying to figure out how to solve my financial problems because I remain dirt poor and it sucks and I hates it. I wanted to be an urban planner and now I am trying to figure out how to provide low cost services to small communities and I have fantasies the world will support my Patreon so I can pay my bills while doing a lot of stuff mostly "for free" for small communities so we can reverse this trend out in the world of everyone going to big cities and mostly hating it because that's where the jobs are and small communities shriveling up and dying. I think it is part of why our world is so dysfunctional.
- ncmncm 6y ago
  I am very happy to be a supporter on Patreon. I promise you will not regret joining.
  - DoreenMichele 6y ago
    Thank you. Years of homelessness atrophied my social skills. I feel like I don't thank my Patrons enough. It's made a huge difference in my life.
    - ncmncm 6y ago
      It is enough thanks to find enlightening writing and see your byline on it.

DoreenMichele 6y ago

The short answer is "I've made a lot of dietary and lifestyle changes." I eat very carefully with an eye towards food chemistry. If you have no idea I have CF and I do this, you wouldn't notice that I eat any differently from anyone else. For example, pizza is a staple part of my diet. But I mostly get takeout pizza from Little Caesar's. They are the only national franchise that makes their dough fresh in house daily. Everyone else ships it in from elsewhere in frozen form. They also use corn meal to help make it not stick. This was something I did when I used to make homemade pizza with a pizza stone. The corn meal is more alkaline than wheat. Most wheat only crusts leave me too acid, but Little Caesar's pizza doesn't because of the addition of a small amount of corn meal to the crust. I also avoid certain oils. It is well established that people with CF misprocess oils and I got very interested in the chemistry of oils. They come in three forms: long chain triglycerides, short chain triglycerides and medium chain triglycerides. Medium chain triglycerides also get called MCT oil and it has long been established that MCT oil is medically beneficial for CF and certain other conditions. This is the basis for why coconut oil is popular in some circles: it is high in MCTs. MCT oil has long been prescribed by doctors to people with CF and coconut oil has an even longer history of being medically prescribed for various gut issues, including stomach cancer (though I can no longer find the link supporting that statement, sadly). I not only favor MCT oils, including butter which is a good source of such, I actively avoid long chain triglycerides because my body fails to break them down and it wreaks havoc and makes me really sick. So I avoid peanut oil, canola oil and some other things. I am a butter fiend and I tolerate animal fats well, such as bacon (though bacon is high in something that is hard on the lungs and I had to be careful with it when my lungs were in worse shape). So I pay a lot of attention to food chemistry and I do eat what other people see as "junk food" but one brand of potato chips is perfectly fine because they cook with oils I tolerate well and another makes me dog sick because they use different oils. If you don't know that, you see me eating pizza and potato chips and don't think I'm some kind of super extreme "health food nut" though I am. I also am very careful about what I touch. Skin is epithelial tissue and people with CF are prone to aquagenic wrinkling -- aka we get extremely pruney in bath water. This is so extreme that they are now using it a cheap initial screening in rural clinics in India. I've actually already written about the skin stuff so let me give a link rather than repeat myself on too little sleep and yadda: https://atypicalcysticfibrosis.blogspot.com/2020/01/skin-and-cf.html https://atypicalcysticfibrosis.blogspot.com/2020/01/skin-and... That even has a link to the PDF about the test they are developing (or have developed) in India for rural clinics. I spent a long time taking $300/month worth of supplements. I now manage my condition with diet and lifestyle and I am mostly well, having resolved that backlog of malnourishment, chemical derangement, accumulated infections, etc etc. I'm trying to figure out how to solve my financial problems because I remain dirt poor and it sucks and I hates it. I wanted to be an urban planner and now I am trying to figure out how to provide low cost services to small communities and I have fantasies the world will support my Patreon so I can pay my bills while doing a lot of stuff mostly "for free" for small communities so we can reverse this trend out in the world of everyone going to big cities and mostly hating it because that's where the jobs are and small communities shriveling up and dying. I think it is part of why our world is so dysfunctional.

ncmncm 6y ago
I am very happy to be a supporter on Patreon. I promise you will not regret joining.
- DoreenMichele 6y ago
  Thank you. Years of homelessness atrophied my social skills. I feel like I don't thank my Patrons enough. It's made a huge difference in my life.
  - ncmncm 6y ago
    It is enough thanks to find enlightening writing and see your byline on it.