Showing posts with label cysticfibrosis. Show all posts
Showing posts with label cysticfibrosis. Show all posts

Thursday, April 02, 2015

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. 

Tuesday, September 02, 2014

YOU are worth it

Watching the first episode of the red band society and the fault in our stars really helped cement in the truth I've known for so long. I wish everyone with a disease would know this and BELIEVE it.

YOU are not your disease! YOU are worth loving! YOUR life isn't of less value because you're sick, in pain and need more help/assistance! Love is in sickness and health! YOU are not a burden. You are a gift. Life is a gift. Loving anyone is a gift. Being loved is a gift. 



Please know this. Please believe this. Please live with this reality. Life is too short to throw away happiness because you don't value yourself enough. 






Thursday, April 18, 2013

It's a...

Today was an amazing day!

We got to see our baby for the second time and find out if it was a boy or girl... I've had a gut feeling it was a boy the whole time and I was right!!

I retook the glucose test and should have results (if they are bad) in a few days.

Everything looks good even though the little guy gave the ultrasound tech a hard time with the position he was in. Stubborn, just like his daddy.

I gained 1 kg (2.2 lbs) so that made the doctor happy, I have to admit I was a little worried about my weight.

On a side note our washer/dryer is arriving soon!

Tuesday, March 05, 2013

Bump Ahead!

Happy 23rd Birthday to my beloved Abe!!!

~Help. 
I had started Letrozole (fertility drug) in September. December was my last month. I prayed & hoped it would work but I didn't get my hopes up, Abe & I were already planning ahead. We'd wait a year - save up some money for artificial insemination. Abe would get one more summer with me in bikinis. 

~Suspicion. 
Being the Christmas holidays I wasn't really paying attention to timing and when I checked my cycle beads app I realized... Hey I'm 4 days late, with this drug I was always very punctual, sometimes even early. 
Then I started to think, my boobs were more sore then usual, I'd been napping a lot & peeing like crazy! 
Silly me didn't have a pregnancy test around but I did have an ovulation one and after googling it the next morning I decided to see what it would say. Well it was positive. 
I got my husband to buy a pregnancy test before work, I'd take it the next morning. 

~The Test. 
Abe was very particular he wanted us to find out at the same time. 
So I took the test & placed it on the sink & we waited... Both looked... A very dark plus sign was all I saw, I WAS FINALLY PREGNANT!
We told all our family members within the next few days. I called the fertility clinic & they set up an appointment for an ultrasound - February 13th. 
I called CF clinic & got in touch with the dietitian & physiotherapist. 

~More pills. 
I right away ordered my favorite prenatal vitamins from iherb - New Chapter Organics Perfect Prenatal: Multi Vitamin, Herbs, Minerals. I also starting drinking a cup a day of mama's red raspberry brew, as I've hit my second trimester I'm taking 2 cups a day. Ordered vitamin B6 (100 mg daily) & ginger (1 capsule a day) to keep morning sickness away, my sisters have had horrible morning sickness during their pregnancies.
9 weeks old

~Thankful. 
I'm so very thankful that I've only thrown up once and if I don't let myself get too hungry I don't get nauseated either!

~Our little sweetheart. 
February 13th seemed to take forever to come but it finally did! We got to see our sweet baby move its little hands & I saw the heart pumping. The ultrasound machine didn't have sound & it was too early to hear the heartbeat anyways. 
Doctor Elliot confirmed what my apps had said, our due date is September 19th. He also referred me to the high risk pregnancy specialist I'll be seeing, that appointment is March 21st, 6 days before my 25th birthday!

Sunday, December 09, 2012

CF Challenge

Q. Your definition of CF
A. A genetic disease that mainly affects the lungs & digestive system.

Q. When were you diagnosed (how old)?
A. 3 weeks old, I had pneumonia and wasn't gaining weight.

Q. Earliest memory of CF?
A. Drinking pediasure bottles (yuck!) & painful tummy aches

Q. Any siblings with CF?
A. 2 younger sisters

Q. Close to anyone with CF?
A. Duh my sisters! Lol and lots of friends on fb.

Q. Favorite thing to do during treatments?
A. Read

Q. Worst part of having CF?
A. Short life expectancy. Pain.

Q. Any perks of having CF?
A. The CF community, easy access to drugs & docs (lol) & appreciation for life.

Q. When do you usually tell new people you have CF? How?
A. :( it's a slow process... I tell different parts along with getting to know them better... The topic usually comes up when I take my gazillion pills when I eat. The how is different with everyone.

Q. Do you have a favorite quote/song pertaining to CF/living with CF?
A. Fix you - Coldplay
Creep - Radiohead
I hope you dance - Martina McBride
Breathe - Anna Nalick