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Be The Tortoise

Never beat them in the quarter mile. -- Hidalgo
Most Americans should be familiar with the story about The Tortoise and The Hare: About how the tortoise won the race by slowly, steadily working towards the goal while the hare ran around, got all tired and ended up taking a nap. (For more info, see the wikipedia entry.)

To me, conventional medicine is like the hare approach. And it doesn't work. You won't win this race that way. It's too hard on the body, it exhausts you, and you lose. I don't just mean it makes you tired. I mean it uses up the resources of the body and doesn't replace them until the body has no more to give -- the way we speak of a mine being "exhausted" (ie all used up and empty and not good for anything anymore). Slow but steady wins this race. If you are going to get well after being extremely ill for many years, you must pace yourself and you must expect it to take time. There are no quick fixes. It takes years to repair a body that has been in decline for years and years.

I was diagnosed with atypical cystic fibrosis in May 2001, the month before I turned 36. I recently turned 44. I have been working on getting well for eight years or so. I don't really know what date to start counting at because I had already been doing hot baths and other stuff to take care of myself before my diagnosis. It was August of that year when I came up with my own hypothesis and began making serious forward progress. But I had been bedridden for about 3 1/2 months, starting in January and ending in April -- the month before my diagnosis. So I stopped being bedridden prior to getting diagnosed, at a time when I was still largely being denied treatment. Clearly, my flailing about, not very informed efforts to take care of myself were already yielding results even before I finally got a diagnosis. Getting a diagnosis was very empowering and allowed me to build on what I already knew and move forward more steadily and purposefully.

So it has taken me eight years or so to get where I am and it is only very recently that I basically feel I am "well". There is still room for improvement but, hey, most Americans aren't exactly Olympic athletes, so I am sure most perfectly healthy Americans also have plenty of room for improvement. I mean I am well enough to work a full time job without it being a Herculean effort to just show up and without having to micromanage my health constantly throughout the work day. I still have to eat carefully and there are some other things I do at work to take care of myself, but getting through the work day is no longer drastically different from what my colleagues do. I take more bathroom breaks than most folks and snack more. And if I am exposed to something, I do some things to deal with that promptly and then do more when I get home. But I can now chat with most people without ending up ill from being around them, I no longer routinely wind up dreadfully ill from meetings, and so on. Also, after tapering off gauifenisen all spring, I took my last dose somewhere around the weekend of June 7th. So I am currently drug free for the first time in about 8 3/4 years. (Happy Happy Joy Joy!!!!)

Most people who come to the site are coming with a lot of experience with conventional medical treatments. They then use that mental model and try to apply it to the information here. It doesn't work. Conventional medical treatments want to use big guns to knock out infection quickly. If that worked, then people with CF wouldn't be dying from "the normal progression of CF". You have to stop this "progression" by rebuilding the body. Unfortunately, rebuilding the body isn't as simple as rehabbing a house. If you want to improve a house, you can gut part or all of it, move out temporarily if necessary, and bring in all new materials to rebuild from scratch after carrying off the old stuff you demolished. You cannot move out of your body. You have to keep it functional while living in it. And you can't just lop off an arm and attach a new one. (Yes, I know conventional medicine does just that for lungs -- cuts out your old lungs and gives you new ones. But first it lets your own lungs become so damaged they are no longer usable. That's a different rant altogether which I will probably write some day -- and hopefully be able to get across my point about the evils of "heroics" without offending and alienating everyone who has made the best choices they could in a really sucky situation.)

My sons and I were talking about this just last night. My oldest made the point that most video games give zero penalty for using too much healing potion/healing spell. If you need 50 hit points and you use a magic potion or spell that restores 1000 hit points, the only downside is you may have paid too much for it. In most video games, too much healing potion doesn't cause damage, doesn't make one sick, etc. If you don't quite know how much you need, more is better just to make sure you get to 100%. Well, real life doesn't work that way. There really is such a thing as "too much of a good thing". Too much of anything can be a problem. Unfortunately, the standards in video games reflect the mental models about health that most people take so for granted they don't even realize they think that way, much less that there are other ways to view it.

People with CF are often deathly ill and desperate to get better. So when they find something that helps them, they take tons and tons of it, apparently using that video game model that "if some is good, more is better and, since I don't really know how much I need, let's go for total overkill to make sure I get to 100% on my health meter". Um, no. Let's not, please. This is not a video game. This is real life. Taking drastically more of something than you need leads to lots of negative side effects. Similarly, I don't have any magic potions that heal you up overnight after a lifetime of illness. I can't heal the sick instantaneously. And neither can the foods, supplements and practices that I have used. It takes a lot of work, over a long period of time, and you must pace yourself. You must be the Tortoise if you want to get there from here.

Here are some general rules of thumb for pacing yourself:
Try one new thing at a time.
If you try two or more things at once (or very close together), you won't be able to tell what it is doing. You need to isolate things as much as possible so you understand the effect it has. This is the most conservative, informative approach. Please take this conservative approach. Doing anything else is dangerous.
Try new things about once every week or two.
Especially at first, you need a week or two weeks to see what it does to your body. After you have been doing this a while, you can speed things up a bit to every three days to a week. But at first, especially if you are in bad shape, give each new thing you try some time to work and give youself some time to observe how it works. It can take up to two weeks for things to shake out.
Start at a low dose and gradually increase it.
I know, this is extremely counterintuitive if you are used to conventional medicine. This is not medicine. Medicine uses a disease model and only does something when things get really bad -- and that's precisely why they get bad. This is about building good health and growing a better body. So think of how we grow our children. You don't feed a one week old baby a steak. You start with small amounts of easily consumed and easily digested food and gradually build up as they get more able to handle it. You must do the same with rebuilding a body ravaged by a lifetime of illness.
Adjust the dosage regularly and organically.
This is a big issue and seems to be a big mental block for most people. Conventional medicine is very stringent about giving you a set dose that must be taken at a set time and doctors wig out if you don't follow that routine religiously. Rebuilding the body is about giving the body what it needs, as it needs it. A baby or small child who has not yet been taught to eat only at meal time will eat when they are hungry and will eat until they are full. They haven't yet learned the American obsession of counting calories and worshiping a clock. Instead, they listen to their body. You must learn to do this too. You must unlearn this silliness about doing things when the clock says it's time and, instead, do things when your body tells you it's time.

So if you have started something new (especially if you started at a high dose) and had good results so far and suddenly start having bad results, the first thing you should do is lower the dose rather than quitting altogether. Your body probably has built up enough in the system that you no longer need as much and you are now taking more than you need, even if the dose you were on was right at that time. Well, it's not that time anymore. Now it's this time and you need to listen to your body to understand what is needed at this time. (And, please, lower the dose gradually and conservatively so you don't put yourself into serious withdrawal, which is a whole new crisis.)
Try new things on Friday night.
If you have a Monday through Friday work (or school) schedule, plan on trying things on Friday night. This gives you the weekend to recover. This is especially important if you take too much of something or if you have an unexpectedly bad reaction, such as an allergic reaction. But even if you don't run into a problem, if something works to help you heal, you will have a healing crisis and therefore you will need some time to rest and recuperate. Some common issues that come up: Diarrhea or constipation, being hungrier than usual, needing extra sleep, having lower levels of energy than usual while your body redirects energy towards the rebuilding process, and nausea as the body dumps toxins and overwhelms your ability to process them out. I still do a lot of stuff on Friday night so I can rest and recuperate over the weekend -- things like serious house cleaning, taking "extra" supplements so I can push the healing process, and so forth. If you don't have a Monday to Friday work week, try new things (or do "extra" stuff) the night before having a day or two off.
Start with supplementing rather than dietary changes.
I kind of hate to say this, but changing your diet is more complicated than taking supplements. The reason for this is that if you take a supplement, you are only dealing with one change: Adding a supplement. But if you change your diet, you are dealing with two changes: Introducing a new food and also removing an old food at the same time. It is much harder to figure out what is going on when you make dietary changes because you can't isolate the factors and, therefore, you can't know for certain what is causing the effect (the deletion of the old food or the addition of the new food or both). This is why we started out taking sea salt and coconut oil as supplements and only later used them for cooking.

Another form of supplementing I did for a long time was to order a big bowl of lettuce in addition to my regular lunch when eating out. Lettuce is supposed to be the best food for alkalinizing the body. To this day, I find I tolerate offensive foods better -- like the yeast in pizza or something very acidic -- if I have a salad first (by "salad", I mean a bunch of lettuce with maybe a few other raw veggies like cucumbers and carrots).
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