My health story

the beginning

I was born in my parents home on Palm Sunday during a winter storm in Calgary, Alberta. Dad still reminds me that he was scared the midwife wouldn't make it. I was child #5 for my parents and they were thrilled with my arrival.  

Within weeks I was in the hospital with pneumonia and my weight was dropping. The doctors couldn't figure out what was wrong. Thankfully one thought to test for cystic fibrosis. 

My mom being a nurse, knew a little bit of what it meant. 

Right away enzymes with nursing, at 9 months a feeding tube at home, the doctors recommended 2 years straight of antibiotics which my parents declined not seeing the benefit and knowing the harm it would do in the long run if there wasn't an infection. 

The dietitian advised a junk food cupboard and junk food diet to help me gain weight. By this time sibling #6 and sister #2 with cf had arrived. My parents also choose to ignore the junk food advice and instead use healthy high calorie food. 

My parents hadn't been vaccinating for a while (they stopped when #3 was little) so thankfully I'm shot free!

My 3rd sister with cf was born just after I turned 4 and within months we made a huge move to a small acreage farm and my parents bought goats for raw goats milk. 

Raw goats milk made a huge change in our health. We each had 1 cup of goats milk after every meal, I had more if I could add chocolate syrup. 

While drinking goats milk all 3 of us were stable with both weight and lung function. Somewhere along my 6th birthday they added fish oil to my daily routine. My parents heard the omegas helped with thinning mucus, which was their main focus because it would help clear our lungs. 

All 3 of us were surviving off of enzymes (creon 10) 5-7 with each meal. 

We also periodically had our adek vitamins but we all hated the taste so it wasn't every day. Chest physio therapy for each of us was done 2 times a day when we felt good. 3 times a day if we didn't. That's roughly 2 hours a day minimum. No wonder my mom got carpel tunnel. 

A major life change was when my dad had to sell the goats and the daily raw goats milk came to an end. My youngest sister with cf stopped gaining weight. My lung health started to decline and I ended up hospitalized for the first time since I was a baby with 60% lung function. 

the change

A big defining moment happened a few months after my first teenage hospitalization, we were approached by family friends who told us about a non profit organization that helps medically fragile children receive high quality nutrients for a low cost. This program literally changed our lives. We saw the amazing change that nutrition could make in our quality of life and for our immune system. 

This is when we started taking glyconutrients, phytonutrients, phytosterols, vitamins & minerals. Within two months we were able to lower our enzyme amount because we were digesting our food better and also saw a huge jump in our appetites. My youngest sister started gaining weight again and avoided a feeding tube. 

About six months later we started on a cleanse product that helped so much we stopped creon 10 enzymes all together, we also got natural enzymes, probiotics, antioxidants, D3 and added flax oil to our pill routine. 

Growing we also had help when sick with essential oils, colloidal silver (homemade by my dad), garlic oil pills and fresh crushed garlic with honey, echinacea tincture and mustard wraps.  

These combined efforts made a huge difference and ended up keeping us out of the hospital. As a teen I was hospitalized 3 times and my middle sister with cf once. We can both tell you why as well. I slacked with my pills, stopped getting enough sleep... basically ran my immune system to the ground. 

My sisters and I all had issues with cf related arthritis. We didn't know that's what it was until I was in the adult clinic but we did find help in a turmeric & bromelain supplement. Which we added to our daily regime. 

adulthood

This is the part where "our" story becomes "my" story as my health journey into adult life took a big change from my sisters. I moved out, got a job and took my health as #1 priority. I had my own income so I could now budget my pills and add ones I needed or wanted to try. 

As part of moving out I got a social life. I made good and bad decisions and learned quickly from my bad ones. A year after moving out I got a serious boyfriend. I found it near to impossible to work full time, have a relationship and keep myself healthy. My health suffered and I ended up having to quit my job, thankfully I didn't get hospitalized and my episode was an arthritis attack that took months to recover from. 

I was able to go on employment insurance assistance (EIA) and moved in with my oldest sister and her family. So I could still afford my pills. 

I made a huge mistake with my health by being in a car with second hand smoke and got very sick. My cough just wouldn't go away even with antibiotics. I had to use a puffer. I knew I had to do something with my lungs and I remembered the garlic oil pills I would take growing up. This started my addition of garlic pills to my daily routine and it's been life changing. My horrible cough went away and so did the puffer. 

Around this time I got engaged and right before the wedding I turned 22 which meant I no longer qualified for the non profit organization's program for medically fragile children. It was another big change.

Married life 

My husband earned too much for me to continue on EIA and to get a mortgage we both needed jobs so I got a part time job at a fabric store which was perfect because it was less then 15 hrs a week. 

I had a very reasonable pill budget now and wanted to add herbs and supplements to enrich my quality of life.  

To also help prepare for a healthy pregnancy I added red raspberry leaf, alfalfa (vitamin K) and also replaced more expensive brand pills for generic but good quality pills from iherb. The more I could save on one pill the more I could spend on different products. 

Some of those products include activated charcoal (absorbs toxins and gas), cranberry pills (urinary health), liposomal vitamin C (natural antibiotic), NAC, spirulina, genistein, vitamin k2 & papaya enzymes. I also started nebulizing colloidal silver to help prevent bad bacteria from growing in my lungs and get rid of any if I had a bad sputum test result.

An older sister got involved with an up and coming healthy energy drink company and they also sold a children's supplement that had glyconutients, phytonutrients, antioxidants, vitamins, minerals and DHA, this one drink replaced 3 of my supplements, had more of what I needed and saved me money. Coincidentally I've also not had an infection since starting it. 

On being stable and keeping it that way

My longest stretch of good health is still happening and I'm almost 27 (March 27th my lucky birthday). 

I've been infection free since December 2011. I was on a low dose of antibiotics for 5 days when I was 8 weeks pregnant in February 2013 but no fever or other signs of infection. 

I switched my vitamin/mineral/antioxidant/phytonutrient supplement December 2011. I've since added daily baking soda water (to thin mucus and make my body more alkaline). 

I've yet to have clinic since using essential oils in the home. I'm less then impressed with their communication or should I say lack thereof. But since I have no other option for clinic I'll just have to deal. So my essential oil post will have to wait. 

Stranger yet is the fact that I've stayed healthy while my son and husband have caught the random viruses that come with winter. If anyone should be getting sick it's me! 

Colby is 1 1/2 on the 28th, nursing is still going great and my weight is stable. 

Part of me is waiting for the pin to drop and for me to need antibiotics but another part of me believes whatever I'm doing is working and will continue to do so. 

Colby pics, weight issues and breastfeeding

breastfeeding Colby

Click HERE to see pictures of Colby from birth until fb doesn't let me add any more :)

by far the hardest part of the whole pregnancy/birth/after birth has been my weight issues because of CF/breastfeeding and breastfeeding itself.

They weighed me in the hospital (day 2) I was 110 lbs. not bad after starting the pregnancy at 115 lbs and only being 124 lbs a couple days before birth. the scary part was weighing myself a few days later and being 106 lbs. then after getting sick from a clogged nipple pore (and subsequent inflamed/infected milk duct) I was down to 100 lbs. all in 2 weeks! to say I was worried is an understatement! my husband, parents and I had a quick brainstorm on how to add extra calories to my diet, to make sure I could continue to breastfeed and not lose weight.

My clogged nipple pore happened around day 3 or 4 but I didn't know it was that until middle of week 2. I had told the health nurse about the pain on my one side and she attributed it to milk let down. well it wasn't. and it only got worse until I got super sick. My sister came to the rescue with heating pads, cabbage, colostrum supplement, and lots of information about what helped her when she was breastfeeding. this whole time my mom had also been with me mon-thu while Abe worked and is truly a life saver!

week 3 has been the best so far since Colby was born, I'm feeling a lot more like myself and my energy is returning. I still feel weak if I do too much, my weight is around 105 lbs mid day (so after I have some food in me). I'm hoping to get it back to 110 lbs by CF clinic in mid November.

3 week 3 days

My extra calories plan:
Hemp protein powder drinks (100 cal per drink, 12 g protein, fibre & iron)
Prune Juice (extra cal and vit C to help with iron absorption)
3 big meals a day
Vemma BODE shakes

Cinnamon for GD - 32 weeks!

His little foot.

Yesterday was my appointment day in the City:
9:30 - Ultrasound
10:20 - High risk OB
1:00 - Endocrinologist

The ultrasound went great, our little boy's head is down already and weighing a perfect amount of 3 lbs. 9 oz. (40th percentile). I'm on the other hand not gaining at all, the doctor is just happy I'm not loosing weight. So right now I'm still 120 lbs.

He got an 8/8 reading on the ultrasound and the amniotic fluid was perfect too (4.?).

My blood pressure is still in the low spectrum of normal.

I get to wait another 3 weeks before going back! I was not expecting this but it makes me very happy, the less trips the better!

My blood sugar levels have been great, a big thanks to CINNAMON! I take a cinnamon pill before I eat and it REALLY helps keep them in good ranges, meaning I can eat more and have more options.

I've also starting drinking baking soda water when I swallow pills, its a great way to remember to drink it, helps keep away heart burn and my body alkaline.

Last night I went to bed with a sore throat and all night it kept me up, the only thing that somewhat helped was apple cider vinegar sprayed on the back of my throat and sucking a fisherman's friends to stop from coughing and irritating my throat even more. So we I got up this morning I made sure to add some crushed garlic and honey to my pill routine, drink some ionic silver (going to gargle with it too), extra vitamin C, hot tea and rest. As of 6:32 my throat is feeling a lot better, hope it continues healing this fast and tonight is better! 

32 Weeks

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.