At the Roots: Natural Healing for Cystic Fibrosis
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From Compliance to Empowerment

8/27/2013

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I was raised to question authority at every turn. Both of my parents, being highly educated with advanced degrees from Ivy League Universities, understood from direct experience that those in positions of power and authority are not necessarily the most intelligent or most knowledgeable in their field. I have learned the same in my work in state, federal, and university governance. More often they are the people who are best at following rules and who are most loyal to the institution and its dogma. In other words, these people in positions of authority are the most invested in seeing that the institution continues to exist and that its ideas are perpetuated into the future. For they’ve staked a good chunk of their lives and their livelihoods on the fact that what the institution professes is right.

This is completely understandable, as the ordinary human mind needs an ideological anchor of some sort. And this is particularly understandable in the field of medicine, for the majority of people who become doctors want to do so because they desire to help people, reduce suffering, and cure disease. I sure am glad they have this altruistic desire, for otherwise I would not be writing this - I would have died a long time ago. Doctors go to medical school because they believe what is taught there is right, or at least that it helps. But the deeper we dig, the more we begin to see that all human knowledge is limited by the very nature of knowledge itself. Communication and observation of natural phenomena is imperfect, and even the most accurate portrayal of reality is simply a metaphor, symbol, or representation of what is real. Language is a tool, a medium used to make connections between the phenomena of the natural world and the human mind. Language is imperfect and always will be.

Thus, the knowledge and beliefs that institutions are invested in are, by their very nature, imperfect and ever-transforming. The science of today will be considered incomplete and outdated in 20 years, as the science of 20 years ago is considered incomplete and outdated today. This is fantastic, because this means that science is non-dogmatic, and can constantly reevaluate its assertions and its language. However, some people within the institutions of science - for example, doctors – can become dogmatic simply because they’ve invested a lot of time, money, and belief in certain things being right. We’re just humans after all, and many of us have a hard time admitting when we’re wrong or when the information we’ve been taught is no longer useful. But the best doctor or scientist is the person who, upon receiving new data and research, can completely shift their paradigm and create a new understanding of the way things work. This is a sign of true intelligence.

Once we, the “patients”, understand that the institution, whatever it is, operates on incomplete and ever-transforming information, then we begin to see that it is not in our best interest to give away all of our power to an institution that may not actually be right. What is in our best interest is to use what useful information and resources an institution provides to help us heal ourselves and reinforce our own power. In short, we must remain empowered.

Every human is born with an innate power to heal ourselves (allopathic medicine calls it the "placebo effect"). The best doctor in the world cannot do the healing for the patient. The doctor can provide the patient with every drug and medical procedure out there, but it is up to the patient and the patient’s body to use those tools to repair the body and bring the body back into a state of balance and health. The best doctors and healers understand this and so seek to strengthen their patients’ innate healing powers by educating them, encouraging them to make their own decisions about their health, assisting in the development of their self-knowledge and intuition, and providing them with every tool at their disposal. In other words, the best doctor does not heal, the best doctor empowers. This is similarly true for the parent of a CF child. An effective CF parent empowers the child, as early as possible, to take charge of her own health and helps her to recognize her own power.

Unfortunately, the importance of empowerment and self-healing is rarely taught in medical schools anymore. Prospective doctors are taught that X drug cures headaches via this mechanism, or Y procedure mends bones via this mechanism. Medicine has become a mechanistic dogma where the patient plays very little role in the treatment. Even the word “patient” has always perturbed me. It implies passivity. Must I be patient while a doctor performs a procedure on me? Must I be patient while a doctor tells me, with assumed authority, that this is what’s wrong with me and this is what will cure me? I’ve been patient for many years now (my whole short life in fact), and I’ve come up to the edge of where the knowledge of institutionalized allopathic medicine can help me. Being patient or compliant is no longer paying off as it used to. I’m doing what they’re telling me to do and it’s not enough. And they don’t know why it’s not enough because their institutionalized knowledge is incomplete. So it is now time for me to withdraw the power that I have invested in the institution and reinvest it in a more worthy vessel: myself. The true healer.

This is called being empowered. It is beyond compliance. There is so much talk in the CF world about the importance of being compliant. Compliance is the state of the ideal patient – she does exactly what she’s told, and ideally no more. The word “compliance” has irked me since I was a kid, raised by my rebellious parents to question authority and to resist dogma. I now know why it irks me. It irks me because by being compliant I am giving my power away to my doctors. I leave the ability to heal in their hands. Being compliant leaves me with no power to heal myself. I have moved through many stages throughout my life: non-compliance (not doing all the treatments that I was told to, yet not taking responsibility for my health), compliance (doing everything I was told to, yet still vesting power in the institution and not taking responsibility for my health), and now empowerment (doing everything I am told to – within reason – yet keeping my power and being responsible for my own health). Being empowered does not mean going against the advice of your doctors and refusing to do your treatments or take your meds. Not at all. Being empowered means that you recognize your doctors’ advice as just that, advice. Most of the time their advice is really good and extremely helpful. I have great respect and gratitude for my doctors’ knowledge, intelligence, and their compassionate desire to help me heal. Again, if my parents and I had not taken the advice of my doctors’ over the years, I would have died a long time ago. But some of their advice is not very good, pretty harmful, or just not enough. An empowered patient listens to her intuition, listens to her body, and knows how to tell good advice from bad. When Western allopathic medicine (or the small subsection of it that we get at the CF clinic) fails to provide answers or solutions, there is no need to despair. Just look elsewhere, at the thousands of other medical systems and institutions of healing that have existed since human speciation, and also at the newest research within allopathic medicine that your doctors may not be aware of (e.g. intestinal microbiology). An empowered CFer looks beyond her doctors and their institutions and seeks answers in many places, all over the world, with an ever-expanding paradigm.

As an empowered CFer, I do more, much more, than my doctors tell me to do. I exercise everyday for at least an hour, usually two or three. I do all of my treatments as recommended and then some, combining the vest, acapella, and huffing together in a way that is most effective for me at reducing my mucus load. No one told me how to do that – I used my intuition to figure it out, but my doctors provided me with the tools. I never skip a treatment. Ever. I take all of my enzymes, supplements, antibiotics, and inhaled meds as intended. When I know something works and it makes a difference in my health, I do it. No excuses. It is sometimes hard for me to add a new thing to my routine when I am unsure that it actually helps. So sometimes I am “non-compliant” in that way, I must admit. I am trying to be better about that, and to give things a good trial run to see if they work before I refuse to do it anymore. But if I discover that it doesn’t work, I will stop doing it, even if it’s against the advice of my doctors. For I understand that it is only advice, and if I choose not to use it, that it my choice and my responsibility. If it was good advice and I chose not to use it, then I take full responsibility for the consequences. And hopefully I wizen up, expand my paradigm and become open to the possibility that the tool they just offered me may be useful.

As an empowered CFer, I also know when not to follow bad advice. There have been drug options that I have refused over the years and that I am very glad I did. I have refused to follow the mainstream CF nutritional advice for years, and am very glad I continue to do so. I also know when my doctors are at the limit of their knowledge base. There comes a time in every CFer’s life when the doctor does not know what to do. I have come to that point and have moved beyond it. I am doing extensive medical research and educating myself on my own behalf. I have a much more in-depth knowledge on a variety of medical topics, particularly nutrition, than my CF practitioners because my life depends on it. I don’t have the choice to be uninformed, when that ignorance could literally kill me. When my doctors can’t answer my questions, it is then time for me to answer them for myself. A few of my doctors respect the body of self-knowledge that I’ve developed and have allowed me to become a partner in the decision-making process, particularly on which antibiotics I use and when.

An empowered CFer knows herself better than anyone else does. Some CFers actually don’t know themselves that well because their awareness, insight, and intuition are stifled or limited somehow. This is a very common occurrence in our society of perpetually “tuned-out” people. I was “tuned-out” for years. So in these cases it is a good idea to shoot for compliance first. But once your insight and intuition becomes strong and you learn to trust it, then it is safe to say that no one knows you better than you do. Thus, no one knows what works best for you better than you do. And ideally, that self-knowledge is ever-expanding and ever-transforming. A good self-healer, just like a good doctor, is never dogmatic.  

So, what I am proposing here is a new nomenclature. I propose that we, the CF community, begin to use another term in describing a CFer’s involvement in her own treatment. I propose that we create a spectrum with (at least) three categories: non-compliant, compliant, and empowered. Let us also begin to honor those of us in the CF community who are not just compliant, but who are empowered and who can inspire other CFers to take their power back and take charge of their lives. Since becoming empowered, my life has transformed in innumerable ways, but most importantly, I am happier and stronger than ever. My life is now my own, and I take full responsibility for it. There are difficult challenges all the time, but I am the decision-maker and I trust in myself to find the right solution. I am powerful. I am a healer.

By healing ourselves we heal the organisms of which we are a part: our families, our communities, our societies, our environment, our species, and the planet. You are my community. Let us heal the world together. 
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How To Begin

8/26/2013

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So if you have read the info on this website, or elsewhere, and are committed to making changes to your diet to improve your health, how then do you begin? Well, the path to healing is different for everyone. But there are generally two ways to go about making a big dietary change. 

The first way is going cold-turkey. That is, you literally change your diet entirely overnight, cutting out all the bad stuff and replacing it with the full "good" diet. This is what following the SCD and GAPS Diet requires for full healing. People do it, but generally with a lot of support or help from parents. For those of us with weight issues, this may be a slightly more risky choice. From personal experience, I have found that if you are going to go this route, there must be ample planning and experimentation beforehand. Before you switch over to your ideal diet, you need to already know how to cook what you're going to eat, which recipes you really like, where you're going to buy your food, how much it costs, how much you need to eat a day in order to get enough calories, etc. In other words, you should have tried pieces of it out in real life and prepared for your new diet before you actually start it. The risk of not being completely prepared is not eating enough, losing weight, getting sick, or getting overwhelmed, hungry, and burnt out so that you quit and go back to eating the bad stuff. Also, in the cold-turkey version, you're going to have to throw out or give away a lot of food. There are some things in your pantry and fridge that you should not eat and should not be tempted to eat, so you've got to chuck it. In the cold-turkey version, you've got to do this overnight, and that can spell food waste if you don't find someone to give it to. I am loathe to encourage food waste. But in terms of healing ability, there's no question that this approach is best, because you are breaking the cycle of eating that feeds the bacterial overgrowth in your gut, causing leaky gut, indigestion, reflux, constipation, and other G.I. symptoms. By doing it this way, you should be able to feel symptomatic improvements pretty immediately. 

The second approach is gradual, eliminating foods step-by-step in a systematic approach. This was the way I did it, over several years. I did it this way mostly because I didn't know what the "ideal" diet was, I just knew that I had to get off sugar, wheat, and dairy. From there I learned more about what I should and should not eat, and made further changes. Although it does not have the immediate therapeutic benefit that an overnight change does, this approach is likely to be more sustainable over the long term and a little less risky. You will be able to take the bad stuff out, step-by-step, getting used to a little change and congratulating yourself for it, then moving on to further improvements. I have found that this approach builds a sense of accomplishment and pride that you are truly healing yourself, slowly but surely. Bit by bit we get used to "living without" those things we used to like to eat, and finding yummy things to replace them with. It is less likely that you will get overwhelmed by cravings if you haven't eliminated all the things you have cravings for (e.g. donuts, chocolate, potato chips) all at once, but one by one. This can be done over whatever length of time works for you; from a few weeks to a few years (the shorter the better, obviously). But keep your eyes on the goal: a 100% clean, whole foods, all-natural diet following the GAPS (or SCD) guidelines. 

If you're going to take the gradual approach like I did, I have a few suggestions. Use the table I created to prioritize the categories of foods and food-like substances that you need to eliminate and replace. The first things to eliminate are obviously junk food and toxic substances like soda, candy, fast food, artificial ingredients of any kind, etc. This includes the food-like substances/junk food labeled as nutritional supplements that your CF docs tell you to eat (i.e. ScandiShakes, Carnation shakes, pre-packaged G.I. tube formula, etc.). The second thing to eliminate is sugar (all concentrated sweeteners including white sugar, brown sugar, molasses, maple syrup, agave syrup, brown rice syrup, corn syrup, high-fructose corn syrup, fruit juice concentrates, etc.). This is a hard one because most Americans are addicted to sugar, even when they think they eat "healthy". Sugar is a physically addictive substance and you have to "break" the addiction. I suggest going completely sugar-free until the cravings disappear, then reintroduce safe sugars like honey and sweet fruits in small amounts (we'll never be able to binge on sugary stuff again, so practice moderation even with healthy sugars). If the cravings return, repeat the process. Even after you're on your ideal diet, you may need to do a sugar fast (eliminating the safe sugars) for a few days once in a while to keep things in control or to alleviate symptoms like a yeast infection.

It took me two weeks before I stopped having cravings for sugar. That was one of the hardest things I have ever done, but it felt so good to be addiction-free! I think it would have taken me a shorter amount of time if I had eliminated sweet fruits and honey. It was a serious exercise in will power, but it's just like getting in shape - the more you do it the easier it becomes. The will is like a muscle. Every stage you accomplish makes you stronger and makes it easier to accomplish the next stage. I actually cut out sugar and cow dairy at the same time, but I let myself eat goat cheese. From there I eliminated wheat. Then all gluten. Then all dairy. Then all bad oils/fats. Then all grains. Then I started the SCD/GAPS diet, my "ideal" healing diet. So, as you can see, it's been a long journey. From the point at which I first broke my sugar addiction to the point at which I started the GAPS/SCD, it took about 2.5 years. It may have taken a shorter amount of time if I had known what I should eat (the GAPS diet) rather than only what I should not eat. But you know. So maybe it will be quicker for you. Remember that with every thing you eliminate you must ideally replace it with something healthy so that you don't run out of things to eat. Look over the chart for more info. 

You have a lot of options when it comes to moving towards your ideal healing diet, so do what feels right to you. Listen to your body and your intuition, and exercise your will power!
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New Info Added: Healing Foods

8/17/2013

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Hey folks. I just added a new section with several subsections on healing foods, including medicinal vegetables and fruits. Please check it out here. 

Also, I have added a bit more info to the Supplements and Herbs section. 

Enjoy!
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    Author

    Mica is a clinical herbalist specializing in cystic fibrosis, severe respiratory diseases, nutrition and digestion, diabetes and blood sugar disregulation, and immune disregulation. Through their own personal experiences with chronic illness, they are passionate about empowering people to take charge of their own health with natural, holistic, and integrative approaches. Please ask questions or share what's worked for you! 

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    Disclaimer: The content of this website and blog is for educational purposes only and should not be considered medical advice. I am not a licensed medical professional and do not take responsibility for any actions taken by the reader as a result of access to this information. 
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