Thursday, March 21, 2013
Lots of Changes - 2nd Trimester!!
My CF clinic is 1 1/2 - 2 hrs away depending on traffic & road conditions. So is my high risk pregnancy doctor.
My first wish was to have a baby at home but midwives wouldn't touch me with a 10 foot pole. Huge disappointment there.
Second wish was to have the baby as close to home as possible. That meant getting baby doctor #2 close by. whether I get her or not depends on if she is comfortable with me & my CF and of course no complications come up.
Then there is my amazing family doctor who is also seeing me until I'm accepted by the local obstetrician.
So I was like "yay only 3 doctors" That all changed today, my high risk doc wants monthly pft's for my lungs & ultrasounds to monitor the baby's weight & health. So that adds CF clinic monthly instead of the once during the pregnancy as I was planning on.
What I am looking forward to is finding out the sex of our baby in about 4 weeks!!!!!!!
There was concerns about me having diabetes already because of my numbers but I sort of cheated on my blood glucose test... So hopefully that's what caused the high numbers! diabetes? NO THANKS!
We got to hear the little baby's heartbeat, so incredibly cool I will NEVER get sick of it. 130 bpm. So who knows maybe a boy??
Tuesday, March 05, 2013
Bump Ahead!
~The Test.
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| 9 weeks old |
Sunday, December 09, 2012
CF Challenge
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
Tuesday, November 20, 2012
Fertility & Surgery
A little while after my last post I got a call for an appointment with the local fertility clinic. Since then we went through all the tests to see if anything is wrong. Well as it turns out nothing is! We have what they call unexplained infertility. At the moment we are trying a fertility drug... I'm praying for a Christmas miracle. Around the same time as all of that I had my 8th polyp surgery. Now I'm doing nasal rinses and trying to keep them from coming back anytime soon.
I updated my website which now includes a short version of Abe's & my love story.

This last CF clinic (early November) I was able to get a prescription for vitamin D 10,000 IU! My weight was still a great 117 lbs. lung function in the 80's. got blood taken for testing vitamin levels (no results yet).
Friday, July 20, 2012
Depressed. What!? Me??????
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| At our Friends Sean & Felicia's wedding :) |
I know I'm different then the typical CFer, I know my crazy treatments have made me an anomaly but deep down I still know CF will kill me (unless some random act of God happens before).
I hope to see my grandchildren, I honestly think that's real for me, for my sisters. But I see my mom & mother-in-law & I put myself in their place & I can't imagine leaving (or being taken away). They are needed here.
I'm getting old, I'm 24 and my friends are dropping like flies & each death seems to take a part of me with them. If I don't have a child in the next few years will I even see them grow up? Get married? Have kids? Those thoughts are what hit me every month when that metaphorical test comes back negative.
I'm positive, all the time - to everyone but myself. In fact I don't want people who love me to see this post. This is not the "me" that they know. But it's the me that I see in the mirror, in pictures... In this blog.
I needed to write this. I don't know why. This is one post I'm not sharing on facebook.
I have one dream I need to come true, half of it has already, the husband part. I want a child so badly it hurts. I want that family portrait. My other secondary dreams are for my hopeful future generations - I hope they travel the world, have a career that gives them great purpose & fulfillment, alongside a family who loves them for who they are. Family is #1... And I'm so lucky to have mine!
I've heard before that gratefulness & depression can not exist together. << so not true.
***I'm not saying I'm clinically depressed either***.
I can only do the best things for my health EVERYDAY. That's my plan, that's my only option, to make my life revolve around my CF. I guess I'm not dealing with that reality so good... It's never affected me so much as it does now and I know this is only the beginning. My problem? 80% of my family, friends & contacts don't get that.
No, I don't have a job STOP BOTHERING ME ABOUT THAT, CF is my job and I don't get a vacation. EVER.
No, I'm not lucky that I can't work & help provide for our dreams & future.
Yes, I'm busy all week at home, I'm trying to do treatments every day & not disrupt too much of my "normal" life.
Yes, I'm proud of this extra 10 lbs I've mysteriously found this past year, it means I can get Pregnant without worrying about my weight, I'm FINALLY 5 lbs heavier then my ideal weight. Im a 120!!!!!!!!
So to sum up...
I'm loving my life.
I'm scared it's gonna end way sooner then I'm ready for (not to say death scares me) I just wanna live before it happens.
I wish people could physically see how CF affects me EVERYDAY.
CF truly is an invisible disease.
I do my best to raise awareness without being gloom & doom (which in reality is CF).
To parents of CFers...
Fight for your own CF champions.
Give them the best nutrition you can. We are all miracles.
You amaze me!
Fellow CFers...
You guys are my people.
You understand.
You fight.
CF sucks.
My family & friends...
I'll do my best.
That's the only promise I can make.
Love you all.
God bless.
Rebecca
Friday, December 02, 2011
Getting ready for Christmas
MSM
Garlic oil pills
My supplement routine My dad found some very interesting research when it comes to silver: http://www.silverlungs.com/ Definitely going on my wish list! I got the iPhone 4S!!! Its white & so beautiful! I love it! Merry Christmas!
Thursday, September 15, 2011
Life Can Be Crazy

Lungs: had some rough days a few months back with chest pain but thankfully an x-ray came back clear.
GI: always a battle, lately with the help of activated charcoal & papaya enzymes it's been pretty good.
Pregnancy status: since my body is screwed up in almost every other way why not a little more craziness? Waiting on an ultrasound because even with blood & home pregnancy tests coming back negative my body doesn't seem to agree (see pic) and that is not the only symptom.
This is me telling my not so secret life issue, yes "time will tell" but man is the waiting annoying!
Good news: as soon as the iPhone 5 is out I'm getting one!
Friday, April 29, 2011
Fantastical Day
Monday, March 21, 2011
Vitamin D Results!
-Tanning
Plus my multi vitamin **My most resent results: 73!** What I've added: -Alfalfa I retest in another 12 weeks.
Thursday, March 03, 2011
Saving Money with iHerb.com!
Tuesday, March 01, 2011
CF movie review: Jack & Jill vs. The World
Sunday, February 27, 2011
Book Update
Thursday, February 24, 2011
Waiting
Saturday, February 19, 2011
Saying No
"Can you quickly grab something from the entrance?" (that's almost as
cold as outside) - no
"Would you like a smoke?" - NO!
"Wanna eat?" - no, don't have my pills along
"Coffee?" - no, messes my stomach up to badly
"Smell this" - no, can't smell because of nasal polyps & 7 nose surgeries
"Are those drugs?" - no, I'm a health nut
"I guess you have a cold" - no, its called "Cystic Fibrosis"
"Are you trying to lose weight?" no, its hard to gain weight! Most importantly, NO, I will not stop fighting for my health and what
I believe in. NO, I will not give up because of my family & friends
and NO, I will never forget all the CF warriors who have passed on!
Wednesday, February 02, 2011
"Cystic Fibrosis" by Dr. Joel Wallach (excerpt from "Lets Play Doctor")
Sunday, January 30, 2011
Nutritional Deficiencies Are Being Attributed To Genetic Disorders
Billions of dollars have been spent on laboratory, pet and agricultural animals to learn more about birth defects. The information obtained from these studies has totally eliminated birth defects in animals.
Cystic fibrosis is a selenium and fatty acid deficiency in the fetus or newborn breastfed infant. Maternal malabsorption of selenium caused by subclinical celiac disease is the initiating cause of the selenium deficit found in the fetus. This newborn's selenium deficiency produces the fibrocystic lesions in the pancreas typical of cystic fibrosis. The cystic fibrosis infant is born with normal lungs but later they become a major problem with recurring pneumonias and pseudomonas bronchial infections which often cause lung failure to be the cause for death at a young age.
In 1958 Dr. Klaus Schwartz of Germany reported in Federation Proceedings (NIH Journal) that selenium was an essential nutrient. Deficiency of selenium produced the same pancreas lesion in test rats and mice as was seen in cystic fibrosis in humans.
In 1972 Cornell University researchers reported that chicks hatched from selenium deficient hens developed cystic fibrosis lesions in their pancreas.This "cystic fibrosis" disease in the chicks was completely reversible within 30 days in newborn chicks by supplementation with selenium. This important research information enabled Dr. Wallach to treat 450 cystic fibrosis patients with excellent results using selenium. Infants with "cystic fibrosis"started on selenium therapy at 3 months are still cured at age 12. Mothers who had cystic fibrosis children have been able to have normal childrenwhen their selenium deficiency was corrected.
Working in conjunction with 3 Chinese scientists Dr. Wallach was able to learn that 1700 children who died of Keshan Disease (a heart fibrosing illness caused by selenium deficiency in the soil) had clear evidence in 595 of these children (35 %) of the cystic fibrosis lesions in their pancreases. Because the Cystic Fibrosis gene is reportedly present in only 1 out of 2500 persons this clearly proves that cystic fibrosis is not a genetic disorder. Approaching the Keshan Disease from a different angle careful autopsy studies of 400 persons who died with "cystic fibrosis" hadcharacteristic fibrotic lesions of the heart exactly like those found in selenium deficiency in Keshan Province of China.
The reason that some mothers become selenium deficient appears to be related to food allergies which cause changes in the appearance of the gut producing malabsorption of food. Breast feeding by a selenium deficient mother makes the infants selenium deficiency worse. The presence of maternal food allergies, malabsorption syndromes and nutritional deficiencies all can lead to birth defects. Dr. Wallach believes that it is unlikely that aggressive searching for food allergies and widespread use of selenium and nutritional supplements will be pursued by physicians who are earning a comfortable living with the status quo. Unfortunately many physicians hearing about the relationship between selenium and the causation of "celiac disease" will be skeptical and not willing to use this information.
Sunday, January 16, 2011
What, Why & How Much Nutrients (Updated!)
+Proprietary Acemannan Supplement+
Organic herbs and cultured whole-food vitamins & minerals
1 tablet 3x a day
+Antioxidants+
Black elderberry possesses antioxidant properties that can help protect cells from free radical damage and may support healthy immune function.
1 tsp a day
Acai Berry Extract
1 Capsule 2x a day
+Phytonutrients+
Each Garden Veggie™ capsule contains over 3,000 phytonutrients taken from 12 whole vegetables. 4x more antioxidant power: Test show Garden Veggies delivers more antioxidant capacity (ORAC) than other brands.
1 Capsule 2x a day
+Choline & Inositol+
- Choline is a key structural component of cellular membranes
- Choline is necessary for the production of the neurotransmitter acetylcholine
- Inositol supports mental health and stable, even moods
- Inositol promotes calm, even in stressful circumstances
- Inositol supports a more relaxed attitude in those that are overly neat and orderly
- Inositol supports healthy ovarian function thereby promoting normal menstrual cycles
- Inositol may support normal, smooth skin
+Colostrum+
Colostrum is a natural source of nutrients, immunoglobulins (mainly IgG) and growth factors.
1 Capsule a day
+Papaya Enzymes+
1 with every meal
+Turmeric Root Extract (Curcuma longa)+
Turmeric & Bromelain is a synergistic combination that helps to support a healthy anti-inflammatory response
2 capsules 1x a day (45 min. before food)
As part of the gen/curc combo for DF508
1 Tablet a day taken with Turmeric & Bromlain
+Vitamin K1 & K2+
normal blood clotting function, critical for the formation of healthy, strong bone matrix
1 capsule a day
+D3 5000 IU+
1 softgel 2x a day
+Activated Charcoal+
For gas & intestinal issues
1 capsule with each meal
+Cranberry & other herbs+
+Spirulina+
Over 60% protein and is a great source of many important phytonutrients and minerals such as carotenoids, essential fatty acids, iron, magnesium, calcium and selenium.
1 tablet with each meal
**not taking while pregnant
Monday, June 07, 2010
CF Arthritis
for years it was a mystery disease/allergy for my sister Aline, she's always had CFAA (cystic fibrosis associated arthritis) the worst. It started with red spots everywhere and one of her joints swelling up and hurting... along with fever, aches & pains. She has suffered from it since she was a pre-teen.
the children CF clinic never knew what it was, she was tested for everything. the first day I was seen by my adult CF doc, I asked him about it and he said it was CFAA, pretty common in CFers.
I googled it, and here are some good webpages I found.
http://www.cysticfibrosis.ca/en/aboutCysticFibrosis/Arthritis.php
it explained everything that had been going on with my sister and as I got to be an older teen me as well... we found a good natural supplement for muscle recovery that keeps away the symptoms. if I miss taking them for a while I get a huge CFAA attack... so, I try to remember to take them!
losing sleep and a low immune system also contribute to an attack, today I got red spots and slight aches & pains. if it gets bad enough I take advil, it helps with the inflammation. the reason I believe this happened was the loss of sleep these last couple days and I may have forgotten some of my pills (OOPS).
Thursday, May 27, 2010
Wednesday, May 26, 2010
Vitamin D
Could the fact that I didn't fast, and took all my supplements that day, affect the data?
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