Thursday, July 11, 2013

My Health Philosophy

WARNING: this is a very personal belief, it may offend a lot of the CF community because it goes against traditional treatment and doctor recommendations.

Drugs:
(not to be confused with prescriptions e.i. vitamins & minerals)

From the FDA website:
Drug
A drug is defined as:
  • A substance recognized by an official pharmacopoeia or formulary. 
  • A substance intended for use in the diagnosis, cure, mitigation, treatment, or prevention of disease.
  • A substance (other than food) intended to affect the structure or any function of the body.
  • A substance intended for use as a component of a medicine but not a device or a component, part or accessory of a device. 
  • Biological products are included within this definition and are generally covered by the same laws and regulations, but differences exist regarding their manufacturing processes (chemical process versus biological process.)
From Health Canada website:
What is considered to be a drug?
Drugs include both prescription and nonprescription pharmaceuticals; biologically-derived products such as vaccines, serums, and blood derived products; tissues and organs; disinfectants; and radio pharmaceuticals. According to the Food and Drugs Act, "a drug includes any substance or mixture of substances manufactured, sold or represented for use in:
  • the diagnosis, treatment, mitigation or prevention of a disease, disorder, abnormal physical state, or its symptoms, in human beings or animals,
  • restoring, correcting or modifying organic functions in human beings or animals, or
  • disinfection in premises in which food is manufactured, prepared or kept."
Natural health products, such as vitamin and mineral supplements and herbal products, for which therapeutic claims are made are also regulated as drugs.

I will not go into the drug approval process (recently they phased out the LD50 process because of animal cruelty) this used to give them the toxicity data needed to find out what would be "safe" for humans.

My belief on drugs:

All drugs are toxic, in the LONG term aspect anything toxic to the body or disrupts the natural function of things is not beneficial in the grand scheme. Short term use of drugs such as antibiotics (some I refuse to take) to get rid of infection, I have no problem with for myself.

*I underlined infection because I do not treat bacteria growths (i.e. pseudomonas), I only use antibiotics for an infection (the only exceptions for this have been not CF related i.e. tick attached with rash). **I've never had more then a count 1 of pseudomonas in my sputum**

My Pill Box
Components I feel important and in some way I've found if ignored, can lead to getting sick:

  • Sleep
  • Missing supplements
  • Weather
  • Exercise
  • Diet
  • Environment
  • Stress/Negativity 

Cell health:
"Healthy cells make healthy tissues, organs, systems and, ultimately, healthy bodies."

With my whole heart I believe in supplements that aid cell health, nutrients that we no longer get in our north american style diets, even in a raw diet the quality of raw foods have majorly declined.

Supplements:
I believe supplements are NECESSARY not only for my self (a CFer) but everyone. Prevention is everything and nutrition is one of the best ways to prevent sickness.

Doctors:
NOT God (know everything about everything), I believe they know human anatomy, drugs (what is written on the label and any history they have with them), diseases they've studied (I've met plenty docs who don't "remember" what CF is, in the local ER/Urgent Care)

Based on such little training when it comes to nutrition, I do not trust doctors (including my CF team) to know and or that they want to know about supplements, herbs or anything that is not a drug. Yes, there are exceptions, I have one in mind when I say this (not CF team). this is not their area of expertise, they are trained that only drugs can cure, prevent any disease although if you ask obvious questions like "does water CURE dehydration?", "does vitamin C cure scurvy?" duh. so according to the law (in US and Canada) those things should be either classified as a drug or are illegal to say.

To their credit Doctors are VERY restricted, this is why I do not rely on them for my health, I use their knowledge, power, resources to the best of my ability and choose when or when not to listen.

I do NOT approve of the fear some have inflicted on CF patients by saying "if you are not compliant you will never get on the transplant list", I've heard this so many times.
I'm listed in my files as non-compliant (reading my files is quite hilarious). My doctors do not know everything I do/try. My adult dietitian knows about most of my supplements...

All my doctors/team says "well if it works for you..." not sure if this is from my files and other doctors recorded failure to make us compliant or stop what we thought was best for our health (i.e. raw goats milk, no junk food, no shots, excess antibiotics)

Hospitals:

I go to CF clinic (every 6 months at this point in my life).
I go to necessary appointments. Otherwise I avoid them, for the simple reason that they are filled with sick people and are breeding grounds for new super bugs (admitted to by our local hospitals and where CF clinic is).
So if I get an infection, its oral antibiotics as well as a strict "sick routine" which has so far consisted of me "moving" to my parents and my mom and siblings doing EVERYTHING we know to kill virus'/bacteria  and support my immune system in whatever my body is fighting. Last time I was hospitalized was when I was 17 (2005). At the time this article is being written I'm 25 (2013).

Immune System:

For as long as I can remember, when ever I've gotten sick it was because some how I weakened my immune system. This is key to my whole philosophy. Lowering my immune system is one of reasons why I say no to the many drugs I'm told or offered to take, why I say no to activities that others are free to enjoy (mostly in winter because of the dry air and stress it puts on my body/immune system), why I take supplements that boost or strengthen my immune system (among other benefits), why I'm careful with my diet and avoid junk food, sugar, white flour, acidic foods, why I try and avoid stress in my life and negativity, why I so carefully consider anything that I KNOW will lower it because I KNOW its a huge possibility that antibiotics will follow and my GI suffers terribly while on them and not to mention how bad I feel during an infection and struggling to breathe, sleep, eat... I'll soon have a child to look after as well.

My health My responsibility:

When I start feeling bad (GI or Lung) its usually my husband who I tell first or notices first (duh) and he always asks "why?", if its GI usually its what I ate, sometimes I either forget or don't (inconvenience) to take my pills. If its lung... well that's a long list, the weather (too much dry air in winter, not dressed warm enough, in Canada winter is very tough on me), not enough sleep, missing too much pills, stress, bad environment (my bad choices) this has happened very few times and its gotten me very sick and I take FULL responsibility.

Since I was 14 I can account as to why I've gotten so sick I've needed antibiotics. That includes my 3 hospitalizations as a teen and the average once a year I've been on antibiotics since 2009.

Facts about me:

  • I've never been vaccinated
  • I grew up with most of these philosophies (credits to God, Prayers, Mom & Dad)
  • I've traveled all over the united states as a child & teenager
  • I've been to Mexico, 3 port stops while on a cruise 
  • Was raised with 2 younger CF sisters
  • From a family with 10 children (#5)
  • Raw cold goats milk, 1 cup after every meal from ages 5-12 (we owned the goats, they were sold when I was 12) my parents and I credit my childhood health (no hospitalizations) in a large part to this.
  • Homeschooled - GED grad
  • My lung function has hit low 60's at age 14
  • Was hospitalized 3 times in my teens, this was the first time since being under 1 (excluded polyp surgeries)
  • Each hospitalization after being 14 was in direct relation to actions/decisions I made (totally avoidable)
  • My mom was an RN
  • I had 2 second cousins with CF born before me (on my mom's side)
  • Was diagnosed because of Pneumonia at 3 weeks old
  • Grew up very petite, my non-CF siblings were also petite 
  • NG tube feedings ages 11 months - 2 years old
  • I've had 8 nasal polyp surgeries, 6 between ages 8-14
  • Live/treat naturally CF related arthritis
  • My parents were not "germaphobes"
  • Grew up with humidifiers when sick or feeling bad
  • Little to no junk food in my diet/lifestyle my entire life
  • Went on the "Hallelujah Diet" when I was a pre-teen for 3 weeks, FELT AMAZING (missed regular food so I stopped)
  • Took 5-7 Creon 10 enzymes each meal, 2-3 with snacks (since I can remember) until I switched to more natural alternatives at age 14. Not sure what enzymes I had as a baby, I know at some point we switched to Creon 10.
  • Have my red belt in Tae Kwon Do
Please feel free to email me, comment and/or ask me any questions. 

14 comments:

Anonymous said...

Hi.. I just read your blog from a Post on FB. I'm the mom of a 13 yearold CFer. My daughter has been very sick since she was about 3. And has 10+ hospitalizations and courses of IV antibiotics a year. I am starting to research more natural alternatives in hopes to find ways to improve her health and lessen the need for more aggressive Medical interventions. Thanks for the personal info of your own you provided. :) Karen mom to an amazing 13 yearold girl with CF

CFchampion said...

You're welcome, if you have any questions feel free to ask, add me on fb or email

Shine said...

That's interesting that u should mention having balance between diet & antibiotics bc this is what i have always felt for a very long time too! :) i have cf & am of the mind that a balance diet mixed with natural suppplementation is a very good thing for cfer in general. though when u do need antibiotics for a short time u should definitely get the ps infection sorted out asap. i like to call my yearly ivs as tune ups ;) i totally agree tho that too many antibiotics can lead to extra problems in our already 'cf extra life' duties lol very good post! thanks for sharing :)

cindy baldwin said...

Random question, I'm curious - what do you do for your CF arthritis? I have found cherry supplements to be SO incredibly helpful. I also think that I am going to try an adult Baltic amber necklace for my fibro & arthritis pains soon. (For the record, when your little one hits the teething stage, I now SWEAR by Baltic amber teething necklaces!!!)

CFchampion said...

A wonderful friend bought me an amber necklace for my pregnancy and for lactation. I will definitely want one for my little one too!
I use turmeric & bromelain (now brand) from iherb daily to prevent flair ups, it works amazing and has so many other health benefits!

CFchampion said...

Because pseudo is everywhere a count one can even come from the lab itself. I Nebulize colloidal or ionic silver to kill things that abx don't. I've gotten rid of pseudo for a couple years naturally & intend to again.
I've found taking supplements with food (for the most part) is the way to go, also making sure they are from natural sources and in a food matrix so the body will actually absorb them.
At first start out small, too much good nutrition too fast will give you a detox reaction and that can be VERY unpleasant.

cindy baldwin said...

Interesting, I didn't realize amber could influence lactation. I have been pretty wowed by how well it has worked for Kate, though - she is back to her normal cheerful self and sleeping great since we put it on her!

Dana Horner said...

Loved reading your blog! I'm 28 and my son (10 months) is living with CF. We see a naturopathic doc and focus heavily on nutrition! I'm thinking about asking if our pediatrician will do weight checks and cultures so we don't have to be around sick children at clinic. The clinic is threatening a g-tube if we don't get his weight up :( was the NG tube helpful for you? I'd hate to dump thousands of calories of corn syrup solids into his little tummy, if at all avoidable. Thanks for sharing, your story is so inspiring for a new mommy just starting this journey. - Dana

CFchampion said...

My youngest CF sister never needed the tube feeding, we had raw goats milk and it did amazing things for all our weight. Add me on Facebook if you have it :)

Christine said...

I am Rebecca's Mom.Rebecca did not have a g- tube, but one from the nose to the stomach. I, too, was very appalled at giving my babies what seemed like extra chemical loaded milkshakes. We were greatful when we could finally give them goats's milk and then finally put them on very effective, amazing supplements, that is after trying countless other supplements from the health store. We just never gave up praying and searching!!

Tracey Rose said...

Thanks for your blog - very interesting to read - I have a lot of the same views for my 5 yr old daughter who has CF ... what alternatives do you use to Creon and why?

CFchampion said...

For good digestion & to keep my GI tract functioning I do quite a few things. Natural enzymes (Life Extension's super digestive enzymes from iHerb), probiotics (30 billion CFU), a daily natural cleanse (contains fibre, probiotics, herbs, enzymes), activated charcoal with every meal (absorbs gas & toxins), papaya enzymes (helps with extra protein digestion and stomach pain), prune juice with every meal (1/2 cup). I wouldn't suggest going off creon until the child knows his/her body well, want to & can experiment what works best for themselves. I was 14 when I started this.

CFchampion said...

Forgot to add why.
Creon caused me a lot of stomach pain, my parents always said it was because I forgot enzymes/didn't take enough but that wasn't it. I've since looked at the side affects and had most of them :(

Anonymous said...

Hi just read your health philosophy and found it so interesting! We have tried a few different natural treatments over the years. (My daughter is 8) but now she has been diagnosed with Mycobacterium Abscessus and now we are really looking at natural alternatives. So far we are getting her to neb silver, are waiting for our shipment of lyposomal vitamin c from amazon, looking into garlic supplements etc. With your probiotic do you have to wait to 2-3hrs after you eat before you can take it? We have a probiotic called florabear and it is very difficult to find the time to give it to my daughter. We live in Canada also and I am wondering how the winter weather bothers you health wise? Also what tips/recommendations would yourself or your mother give to someone just starting out with the natural lifestyle. Thanks!