The one with a little too much information

WARNING: TMI about poop. 

Yes, this entire post is about poop. 

Good news: little to no stomach pain for months. 

Bad news: hard, huge poop. Toilet plugging, painful and at times bloody poop. 

After weeks of pain and scared something was seriously wrong I decide to try Welch's prune nectar, I had used it right after I had Colby to prevent more pain due to the tear. It had worked well. 

After one drink yesterday (1/2 cup) of this miracle juice I had a pain free bm.  YES!! I couldn't believe it. Yay me and now yay you if this is also your issue. Cheers!

The one I don't want to write

I've linked to my sister Aline's blog for years and will continue to do so. She passed away on August 16th from complications due to CF in medical ICU. 

it been a very hard almost month... Can't believe that much time has passed. 

She was such a big part of my childhood and teenage years. As adults we both took very different approaches in every area of our lives... Which led to us being very distant and losing most of what we had. I grieve who she was and what we all lost. Keep my family and her husband in your thoughts please. 

I'll leave you with the lyrics to Josh Groban's "to where you are" which got played at her celebration of life ceremony. 

Who can say for certain

Maybe you're still here

I feel you all around me

Your memory's so clear

Deep in the stillness

I can hear you speak

You're still an inspiration

Can it be

That you are mine

Forever love

And you are watching over me from up above

Fly me up to where you are

Beyond the distant star

I wish upon tonight

To see you smile

If only for awhile to know you're there

A breath away's not far

To where you are

Are you gently sleeping

Here inside my dream

And isn't faith believing

All power can't be seen

As my heart holds you

Just one beat away

I cherish all you gave me everyday

'Cause you are my

Forever love

Watching me from up above

And I believe

That angels breathe

And that love will live on and never leave

Fly me up

To where you are

Beyond the distant star

I wish upon tonight

To see you smile

If only for awhile

To know you're there

A breath away's not far

To where you are

I know you're there

A breath away's not far

To where you are

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. 

In search of: Calcium, weight & better lung function

I almost missed this clinic. Last night (5 am) feeding Colby to sleep I was just thinking about random things and remembered my next cf clinic was sometime this month so I checked my phone and was like WHAT!? I have to get up in 6 hrs. :( 

Traveling with my wounded husband (broken tibia with plates, screws & clamps put in) & my almost 8 month old son we headed to CF clinic. 

I'm thankful I had 4 meals yesterday, I'm thankful I didn't use the washroom before I got weighed at clinic... 105.1 lbs!!! I was very surprised to be the same weight as last time with losing 6 lbs when I got sick over a month ago. 

First I saw the dietitian. She was happy I didn't lose weight but encouraged me to eat every 2 hrs and pack on the pounds. that's just not a realistic goal for me. Especially with all the calories I'm losing while nursing. 

Next I got results of my sputum sample from last time +4 of Staph. 

Then bad news from my bone density scan. I've lost bone density, enough to be worried about and for them to encourage extra calcium intake. I'm guessing this is because of the pregnancy. Off to find a good way to add extra calcium to my diet & supplementation. My next bone density scan is in 2 years. 

More bad news: my spirometry lung test showed my lung function to have dropped to 69% compared to the 82% last time. Very disappointing to say the least. With no signs of infection we both feel antibiotics is not the route to go... Yet. My doc encouraged more lung clearance. She did listen to my lungs which she said sounded clear. 

I got my yearly x-ray so I'm looking forward to hearing about those results. 

I'm feeling great so that makes everyone happy. I know what to work on to prevent future problems and will do my best!

Another appointment in 3 months. 

2014, welcome!

 I realize it's been a long time since I've posted. I'm sorry! Truly. So here is an update :)

 

At Colby's 4 month appointment he was weighing in at 15 lbs and 26 1/2 inches long. That's 50 percentile for weight and 97 percentile for height! I've been so blessed with a healthy growing boy. 

I had my follow up cf clinic today (3 months after my pfts dropped to 70%) well the tech was right! With no restrictions (a proper fitting bra) my pfts were back to pre pregnancy levels - 82% 

My weight stayed the same as last time 105 lbs. my doctor is happy with this while I'm nursing. 

Results from sputum taken in Nov at cf clinic:

3+ Staphylococcus aureus

Yay no PA!

I got an iPhone 5c!

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

Unassisted Home Birth & Following Aftermath

Warning: this post may seem or actually be extremely emotionally written. I'm a new mom I think it's ok. My nice self will be back after these messages. 

Unassisted home birth experience:

Beautiful. Amazing. Epic. Forever my favorite moment. No regrets. 

A few words I would use to describe my labor/birth experience. 

This is my story. This was my birth. This is my moment to claim forever. I trusted my body, I used the tests and information available to make an educated and prepared decision. 

If people (midwives/doctors) would have given me #1 a water birth option and #2 a damn say in how I was to be monitored during labor, I would have been in the hospital because that would have been my best available option (not enough midwives to have a home birth in this area). 

How I got labor going:

Thanks to a fb friend I found out about black cohosh and used it to kick start labor. 

It started for sure at 4:30 Saturday morning. After only 4 hrs of interrupted sleep (about every 1/2 hr I was woken by pain) I couldn't sleep anymore, contractions were 30 min apart. 

I did some walking, ate some toast, still thinking it might be prep not active labor I had a shower to see if it would pause it and let me sleep. No such luck. Contractions were now 20 min apart lasting 40 seconds. It was 8:00 am. 

At 12 contractions were 10-13 min apart lasting 1 min. At this point I thought ok. This isn't prep, this is the real deal. 

I couldn't get comfortable, didn't matter what I did, lying down - in any position wasn't comfortable at any time, walking was ok in between but not ok during. The birthing ball helped for a bit but eventually the only place providing relief besides the shower (couldn't stay in there forever) was the toilet. Good thing too, at 4:30 pm I ran to the bathroom at the start of a contraction (5-8 min apart lasting 1 min)  and felt the urge to go poop and POP my water broke and it even splashed from the toilet to my legs & floor. The color was clear with white stuff in it. Perfect color :)

Soon after that the pool was ready. This is where I just chilled. My contractions stayed around 5 min apart lasting from 1 to 2 min (near the end). That pool was my haven, when I felt the urge to push and could feel his head I was so surprised THIS WAS GOING WAY FASTER THEN I THOUGHT! I wasn't even in that much pain and it wasn't unbearable!

Thus began the slow work of stretching my perineum. I knew I didn't want to rush this if I would, I would tear bad. I had only done the stretches with evening primrose oil once (noted for next time). 

I'm thinking I did this for a half hour, I pulled him straight out of the water, he cried almost instantly and it was the best moment EVER! Abe behind me with tears in his eyes helps wash him off, we waited until the cord stopped pulsing and he clamped and cut the cord. 

I delivered the placenta (after waiting for the gush of blood to signal detachment from the uterus). It was beautiful and whole. Then I drank a ton of raw lemon juice to prevent too much bleeding. 

I was able to breast feed Colby for a half hour and then he stayed up for hours. It was the best time. 

The next day:

Due to pressure from family members Abe called in and let them know what happened and it being a Sunday, got us to go to the ER and get checked out. Just our luck we got an ass hat of a doctor. Admitted Colby for low blood sugar (2.6) which is the low side of normal after he hadn't eaten much in the last few hours because he was being entertained by adoring family members... This began our stay in hell. I got only 1 hr of sleep. The wards blood sugar testers weren't working so every time before I fed him they pricked his heal and had to squeeze out a vial tiny vial of blood, I cried every time because it was all unnecessary. Even the ward doc was good with how Colby was doing. Said we would see my family doc in the morning (which was my plan to see her as soon as possible, had an appointment booked for the 11th just in case). Well my awesome doc discharged us because his levels were normal through the night. 

The ass hat had written we had come in worried about him being tired and lethargic. Out right lies. He will never be seen by me or my son and he only told us his first name. He put us through hell to prove his point which apparently was home births were dangerous and I could have killed my baby. Ignorant jackass ass hat. All the other doctors and nurses treated us great and were happy with how both of us were doing. 

Things I regret:

Not waiting one day to see my family doc

Not taking the newborn blood sugar to shove in the asshole doctors face. 

Not doing my research on newborn blood sugar levels so when the doctor wanted to keep us for an blood sugar that was end of the normal spectrum after not eating good during the last few hours (due to visitors and cutting his feeding to come in) that I could have said no with an educated reason and not have put all of us through that horrible night at the hospital. 

Notes for next time:

Do perineum stretching. 

If everything goes well with pregnancy/cf do the exact effin thing (and take blood sugar). 

I trust my body & baby/cf monitoring way more then a chained to the bed hospital birth. 

We made it to the due date

My 39 week appointment went great last week. I may have offended the endocrinologist when I was so happy about not seeing her again (until my follow up in January). I seriously could not contain myself though!

At the ultrasound he weighed in at 6.7 lbs (25th percentile) and everyone was really happy! My ob gave me great news: no inducing until 10 days overdue. I gave her great news: no more then one appointment per week, with how long we have to travel it just won't work. 

My blood pressure was weird 128/90 but after 5 minutes of lying on my side it had started to go down. They said it could be my lack of sleep (1.5 hrs) and the fact my stomach (CF GI issues) was hurting. 

I weighed 125 lbs. exactly 10 lbs more then my pre-pregnancy weight. 

Skip forward 3 days (Sunday). I get my first taste of labor or preterm labor as some call it. Abe & I get super excited and it stops. *sad face* 

Today. MY DUE DATE HAS ARRIVED!!!!!!

First we get our ultrasound. Baby is 7.12 lbs (over estimate most likely) - 40th percentile. 

This week I lost a pound and weigh 124. They don't say anything so neither do I! 

After taking my blood pressure (92/56) the nurse mentions that the ob will want to check me, I laugh and say she might want to but she won't because I'll say no. She looks shocked but says ok. Yay me. I'm not sure if she told my ob or my ob knows me better but she never asked!

Next appointment is in one week. 

**note to baby: please come before then, Love mom & dad. 

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. 

3rd Trimester

I've made it to the 3rd trimester!!

27 Weeks 5 days

I'm shocked the doctors haven't made a bigger deal about my weight... Last appointment I pulled the old CF clinic trick, eat a big meal before & do not use the washroom until after the weigh in... Their scale said 125 lbs. I've only gotten as high as 121 lbs on both my home & parents scale. With my starting weight at 115 lbs I'm happy to be getting no complaints!

Lung function has not gone down, it actually has gone up! We'll see if I'm as lucky during these last few months of pregnancy. 

He is sitting really low and I'm very thankful for that. 

My sugar levels have been great and the endocrinologist has been very happy with my numbers. 

June 13, 2013

My lungs have been bothering me a bit these last couple says with a dry cough. Anything I cough up is clear so that makes me happy! I've lowered my garlic intake to reduce the chance of bleeding issues during & after birth and I think that's why I got the cough. 

I've managed to schedule all my doctor appointments to one day every 3 weeks... It's quite a relief. Hoping it stays this way for at least another 2 months.