Life is chemistry.

Knowledge is power.

A lifestyle rooted in sufficient knowledge is a tool more powerful than drugs, doctors, or the many infections that typically kill a person like me.

The doctor of the future will give no medicine, but will interest his patients in the care of the human body, in diet, and in the cause and prevention of disease.
-- Thomas Edison


Welcome to my hidden world that few of my coworkers or casual acquaintances know anything about. This website grows out of eight plus years of the journey towards wellness that doctors told me could not be made. I am winning the battle against the daily onslaught that is supposed to kill me
...and nearly did.

19 August 2009

Methodology

To a large degree, I and my son make observations about our personal first hand experience and try to improve on what we are currently doing. Additionally, I make use of bits and pieces of info and advice I hear from people whom I consider "in the know" -- mostly moms who have found what works for a difficult kid that the medical community has written off. In many cases, the science part of it gets pondered after the fact or somewhat incidentally as an attempt to understand and model what is going on in hopes of improving on that track record. I do my best to put supporting scientific information on my website as an aid to understanding and creating a new mental model. But science is not my strong point. Practical problem solving is. And, frankly, I don't necessarily have a lot of respect for a lot of scientific "facts" out there. I am too familiar with how studies are done and many of them are fundamentally flawed. I'm not impressed.

Given my methodology and background, I have been known to make all kinds of errors in terms of scientific details. If something I say doesn't fit with what you remember from high school chemistry, it's quite possible I got it wrong. If you find what you think are scientific errors on the site, please write me. I will do my best to investigate and, if appropriate, correct them. In some cases, the scientific information available is contradictory or incomplete or sometimes I just think it is plain wrong. In such cases, I generally go with what makes sense to me based on first-hand observation, personal experience and other data available to me (often anecdotal from talking to people online). Given the cutting edge nature of my work, it is a given that much of it will be only partially understood at the time that I try to record it and share my thoughts on this site.

How to Use the Site

There is no intent for this site to be prescriptive. The intent is for this site to be descriptive. It is rooted in the first hand experiences and observations of one woman who happens to have a diagnosis of "atypical cystic fibrosis" and also has a son with the same diagnosis (plus another son who is a carrier). My approach is to share what worked for me and my sons and some of my ideas about why I think it worked that way. My goal is to try to get people to think for themselves and be proactive in making dietary and lifestyle changes as a first defense against serious health problems rather than waiting for things to deteriorate and then running to the doctor for yet another pill. I pursue a wellness model -- a model of working daily on building a healthy body -- rather than the disease model of the medical community. I do not believe you can get well in the face of a genetic disorder or other very serious condition by waiting for things to go awry before acting. You must act now and be faithful in taking care of yourself in order to avoid the most serious consequences that life can throw at you, especially if you were born with a body that works differently from the norm.

My expectation is that the solution which works best for each individual will need to be custom-crafted. Information here should be taken as a stepping stone to discovering for yourself what works best for you. It should be viewed like a menu to pick and choose from, not a strict set of orders to follow.