My Everyday Routine: Meds and Exercising

Setting Creons aside, CFs still have lots of other medication they should drink/inhale on a daily basis. In general I think all CFs take about the same type of medication, though it varies in quantity. Here is the list of my daily intakes (except when stated otherwise):

Mornings:

Pills:

- Calcium

- Ursotan: For my liver

- Omez: For heartburn and indigestion due to lots of coughing

- Multi-vitaim: StaminoGro

Inhalations: (Plus 3 Active Cycles*)

- 2x Duovent puffs: To open up my lungs and bronchiole

- Nebulisers: 4ml 5% Hypertonic Saline

- Nebulisers: 160mg (4ml) Gentamicin

- 2x Symbicort puffs: To keep my airways open.

Afternoons:

Pills:

- Vit A

- Vit D (once a week) 

- Vit K (once a week)

- Vit E

- Omega 3 (note: not Omega 3&6)

- Ursotan: For my liver

- Zithromax (three times a week)

- Probiotics (accompanies my Zithromax three times a week)

Inhalations: (Plus 3 Active Cycles*)

- 2x Duovent puffs: To open up my lungs and bronchiole

- Nebulisers: 4ml 5% Hypertonic Saline

- Nebulisers: 160mg (4ml) Gentamicin

- 2x Symbicort puffs: To keep my airways open.

I use my enzymes - Creons 25 000 - throughout the day whenever I eat. Currently I drink 35 a day in total.

Just before I go to bed I inject 12 units of Insulin into my upper thigh. This ensures that I have consistent energy-release throughout the following day which in turn saves me from being so very tired all the time.

Exercising:

I am a very lazy person in general. But I do love my netball!

I go to netball practices/matches 2x per week for 1.5 hours each session.

I know I am supposed to be practising at least 3 times a week. Maybe by writing this blog I can finally push and force myself to exercise an extra day and do more weight-lifting and muscle building exercises. 

* Apart from physical-run-around-exercises, I also have breathing exercises called the "Active Cycle" I should do twice a day while nebulising. The breathing exercises replace physio and they are perfect for a busy lifestyle.

While I inhale the Saline, I do the following Active Cycle:

Stage 1:

- Take a deep breath in.

- Keep it in while counting to 5.

- Release.

(Repeat above 3 steps 5 times).

Stage 2:

- Take a deep breath in and fill your lungs with as much air as possible. (do not exhale yet).

- When you are positive you can't breath in any more air, just take a quick sniff through your nose. (this actually lets in a bit more air, expanding your lungs even more).

- Release.

(Repeat above 3 steps 5 times).

Stage 3:

- Take a deep breath in an huff as hard as you can. (You may use a flutter if you'd prefer that). Do this once.

This will cause you to cough extremely, if you have not coughed already. It is a good way to get all the gunk out of your lungs.

And that is all there is to it!

Stage 1 + Stage 2 + Stage 3 = 1 Active Cycle.

The ideal is to do 3 Active Cycles TWICE a day.

If you cough during the active cycle, don't worry! You are supposed to be coughing, so get rid of all that mucus and just continue on. 

I do not have one of those vibrating vests, though I have seen CFs using them on YouTube and mentioning it on their blogs. I, however, have never heard of these vests up till a month ago when I coincidently saw a video of a CF girl explaining how it works. Therefore I do the breathing exercises / Active Cycles and play netball.

Hope you will all stay active and on the go! Let me know if you also do these or other exercises.

Breathe and Believe

Nina

xXx

From Birth to Age 13 - My Childhood Story

Born

I was 3 days old when I was diagnosed with Cystic Fibrosis: 
I did not have any bowel movements because my intestines were blocked. I got an operation but after a few days my intestines were once again occluded, which lead to a second operation. Further tests concluded that I had the genetic disease called Cystic Fibrosis, or CF for short.

Growing up with CF was nothing strange to me. It was a second nature since I had no idea what it was like to be "normal" (or healthy) anyway. CF definitely helped define the type of person I am today. I was constantly teased and my body commented on from kindergarden till highschool, and it was only in grade 6 when I finally stood up for myself. But let me start at the beginning.

Going to primary school

Kindergarden - I was too young to understand the comments kids made, but I remember wondering what made them say that my stools smelled different than theirs. I mean, obviously no one poops roses and lavender, but why did they comment on MY smells? 

When I went to primary school the children got even meaner. I was too ashamed to go to the school's bathrooms, scared that kids will mock me. This sometimes meant that I had to keep everything in till I got home, which lead to a sore, constipated me. Later I decided to ask the teachers' permission to got to the bathrooms during class, because then the bathrooms would be free of other kids. This new decision made life a bit easier.

Grade 4 to grade 6 were the toughest years. At this stage children began to classify themselves (and others) as popular, average, nerdy or just plain uncool. I found myself in the average-nerdy class - not too popular among my fellow students, though very popular among the teachers. I was a very smart, intelligent kid who never got anything below 85% for my assignments and tests. I was friendly with everyone and had quite a lot of friends. Most of them were the "uncool" (as they were labelled) boys and girls, because they were never mean to me. The way I had been treated in my years of kindergaden, lead me out to be a very shy and self concious girl.
What made it even more difficult was the fact that I was one of the tallest girls in the school, and extremely skinny too (because of CF). My legs and arms looked a bit unnaturally thin and I had very big feet to support my tall, slim figure. This gave kids even more reason to tease me. Kids would constantly point out that I have very big feet or extremely thin legs. (Pft! as if I did not know...)
This made me even more self-concious. 
Luckily my tall body was good for one thing: I played netball and was in the A-team from grade 1 to 6. In grade 7 I played for the open team as the Goal Keeper (GK). The team I played in consisted out of the most popular girls in my grade, except for my best friend who, luckily, also made the team with me. (I don't know how I would have coped with all those mean girls each practice without my best friend by my side!) Still, I kept on trying to be nice to them with the hopes of being accepted or becoming one of them or part of their group.

Speaking Up!

Then one day in Life Orientation class the teacher discussed diseases such as Anorexia and Bulimia. As he listed the bodily characteristics and symptoms of people with this illness, I found myself shrinking in my seat. Although I knew that I was very skinny indeed, I have always seen myself as "normal-enough" and did not want to be associated with an ugly disease such as these previously mentioned. I have seen pictures of such people and I KNOW that I DID NOT look like that at all! 
But as luck would have it, the meanest, snobbiest girl in the school, the one who also formed part of my netball team (and yes, it sounds just like an American movie) raised her hand. The teacher ignored her for a while, continuing on about Anorexic people. When he finally looked at her she pointed her finger at me, (who sat quietly at the back of the classroom), and blurted out, loud enough for everyone to hear: "Like her!"
That's when the whole class turned around in their seats to look at the skinny, anorexic-like me. I just shrugged and smiled off the comment and tried to stay strong but my little heart broke into a million pieces. I was humiliated. 

God must have done a very good job mending all the pieces together and giving me extra courage with that too, because after class I marched straight up to her and asked to talk to her alone. That is when I looked her straight in the eyes with tears rolling down my face saying: "I am sorry I am not as perfect, but unlike you, I have Cystic Fibrosis!"

That day I went to my mother's car and burst into tears. My mother was used to me coming home sad or upset, but I think that day really broke her heart. After telling her what I did, she hugged me and asked if I wanted her to call the girl's mother. But I didn't.

The next day the girl and her friend came up to me and gave me a hug, apologizing for their rude comment. They even asked me about CF. I explained to them the basics of the illness and forgave them too, since they were only 12 year olds and did not know any better... or did they...?
But still the fact was that she could never undo that day, she could never go back in time and prevent the whole class from turning their heads to look at me. She could never keep a little, shy girl from being humiliated in front of 35 people. The damage had been done.

I am capable of everything with God by my side

It was in that time that I grew very attached to God. I was born and raised Christian and this meant that I have always made a concious choice to keep my mouth shut in order to prevent someone else from feeling bad about themselves. I have always asked myself: "What Would Jesus Do?" and then I would have reacted in a way I knew would make the other party happy. I even tried to ignore snide comments about my nails looking different or my body being to skinny. Whenever someone asked me the FAQ: "Why are you so skinny?" I would always answer it with a "because God made me this way."

And that is exactly what I believe too.

Still, I am Blessed!

God saw my sorrows and, although he allowed for the bad things to happen, he certainly made up for them in His own time!

I am a very talented woman. As a child I learned to play the wooden flute and later the silver flute. My freakishly thin, long and bony fingers have learned to play the piano as well. I did acrobatics and netball and competed in various eisteddfods, from singing to playing my instruments. I got very high marks as well which varied from 80% to 100%. But the talent I have kept on pursuing up till today, is art. I can draw and paint very well using any medium under the sun. My favourite of all is painting with oil-paint or drawing with an old fashioned pen and a bottle of brown ink.

I also cannot begin to count all the people who support and pray for me. The list goes on and on.

I have two siblings. A brother two years younger than me and a sister, 9 years younger. Both are healthy and they aren't even carriers of CF.

Every night I thank God for my health and all the other blessings He gives me each day. Although CF is a nasty little critter, I feel that I could've been off much worse. 

All of us CF-sufferers know that people would often say: "You don't LOOK sick". And that is yet another blessing we should be thankful for. We are all beautiful people and, although we might look a bit skinny or odd, we do not suffer from any other obvious deformity. We have the ability to run around and walk without crutches. We are able to eat as much as we want to without worrying about getting fat, (and I know this is a trait some people would LOVE to have).

The above, though, do not overshadow the fact that CF sufferers still have EXTREMELY tough lives. There is a reason for us being referred to as "sufferers". We still have a pretty damn difficult life, to say the least. But in the end we can rest assure that God has our backs. We should just Breathe and Believe.

Nina

xXx