Confessing - I am struggling..

Dear Readers

My last post was on August 8. Since then a lot has happened (and not happened).

In middle September I went for my monthly clinic-visit at Steve Biko Academic Hospital. 
Now, we all know that different clinics have different LF machines which means that you cannot compare two different machines' results to analyse your progress. You can, however, still estimate how well your lungs are doing in general.

In September my lung function was 52 or something (on the Steve Biko machines). That already is quite a drop. 

Then on 24 October I did my monthly visit again. That morning I did not nebulise with Saline or Gentamycin because it was one of those hectic mornings. It was also a cloudy, cold day which makes my lungs feel a bit worse. I did not even have time to eat breakfast.
Anyways, I got my LF results and it has dropped to 48.


Now the question you might ask is:
"Why did your lung function drop so badly, even when you did everything a CF is supposed to do?"

Well, my fellow readers, I have been going through a difficult time CF- and religion-wise. 

1. I KNOW a CF has to nebulise at least twice a day.
2. I KNOW we have to do regular exercise.
3. I KNOW we have to get enough sleep and drink all our pills.
4. I KNOW we have to eat healthy and not skip breakfast.
5. I KNOW we have to use our flutter .
6. I KNOW we have to trust and have faith in God Almighty.

But, and this is quite hard (though in a way not so hard) for me to tell you - I have not been one of the most well-behaved CF the past couple of months.

Why?

I DON'T KNOW.

1. I don't nebulise twice a day.

In the mornings I always nebulise. But at night I feel so .. dead inside. I have no will to nebulise. Not just because I am tired or exhausted. But mainly because I cannot motivate myself.

2. I don't exercise enough.

For a month our netball was cancelled because it was over the vacation period. But did I jog / jump on the trampoline / do something else for exercise?
No.

Why?

Because I tend to do only the things I like. That is why I will NEVER EVER stop playing netball for as long as I live. But jogging and gymming - I hate that. My lungs burn and I suffer all the way through exercising. Plus, I don't have money to go to a gym where trainers motivate and help you. I am a student for goodness sake. I just don't have those funds.
I also don't have that will that drives me to look after myself...

3. I don't sleep well and I don't drink all my pills.

Why?

I don't know. I don't have that will and desire which makes me remember to drink all my pills. (Of course this doesn't go for Creon as I drink this almost every time.)

4. I am not eating healthily enough. 

Why?

Because I tend to be so busy (especially the last couple of months, which is a story on its own), and I don't always have time to eat breakfast. But when I do eat, I still eat a lot. I just have to get to that point where I tell myself: "You WILL eat breakfast for your health's sake!!"

5. I am not using my flutter.

Why?

Because I hate coughing. I hate that burning sensation in my lungs. I hate the sound of coughing. I hate having to spit out mucus constantly. But I especially hate fluttering. It is awful and hard and time consuming.
Once again, I don't have that WILL POWER in me.
I just don't know why.

6. I have trouble trusting...

This is perhaps one of the most sensitive topics I can discuss since not everyone is Christian. Some non-Christians might take an opportunity like this to try to prove to me that there is no God. Therefore I call upon my fellow Christians to help me believe like a child again.

I have never ever had trouble believing. I knew (and still know) God is good. I knew (and still know) He is out there looking after me. I knew (and still know) He loves me and hates to see me like this.
I know His hand is only a millimetre  away from mine.

But I am having so much trouble with my faith.

Why?

I DON'T KNOW. In my previous post I described how great God was when the HIV tests were negative. So HOW ON EARTH can I be so selfish and not trust him? How can I be such a horrible person and not pray as much as I should?
How can I not read my Bible as often as I should?

This makes me sad. I cry a lot. I feel so empty inside. I know God is right beside me. I just don't know how to get our relationship back on track again.


My fellow readers..
As you can see I have confessed to a lot of things I am doing wrong. But I am not proud of it. I hate myself for being like this. I hate myself for not looking after myself.

I, as I have said, feel so dead and empty inside.

"Then what about your parents, friends and support systems?"

They are wonderful!
I love them so much!
Everyone is so supportive and tries so hard to understand.
I don't know where I would have been if it weren't for them.

But that is not enough. Although they really try to understand, they don't know with how much pain and suffering I really sit.

I don't want to talk to them about that which I have just confessed to. 
I know my parents will be angry and disappointed. I know what their reactions will be like and I don't want that. Their reactions will make me mad and insane all over again.

So, I don't know what to do. I sometimes don't have tears any more. I just feel sad.

It really is hard to Breathe and to Believe...

(To be continued in a second post coming soon...)

Test Results, Lung Function and Overall Health Update

Let me start off immediately by saying that the HIV and Hepatitis B tests are negative! I thank God for hearing our prayers and for blessing me with these results.

Wow, what a day Monday has been. I don't think I have ever been as frightened as I was yesterday. One moment I am healthy and happy, and the next thing I know, I am signing a form, giving the hospital permission to test me for HIV.

It just comes to show you how thankful one should really be. And I definitely am. Every night I pray and thank our wonderful God for my healthy mind and semi-healthy body. I could have been off far worse.

Speaking of a semi-healthy body...
Yesterday I was finally discharged at 18:00.
My doctor and I did not, as always, do the halfway-through-the-2-week-treatment Lung function and we ended up doing my LF 3 days before being discharged. The results....

Before Duovent: 63
After Duovent: 67 (this is the % we usually look at when analysing my lungs).

I doubt whether I got my LF back up to 71 in the rest of those 3 days, but I do believe that my LF should be 69 at the moment. I will just work very hard and exercise to bring it up to 71 again.
I also feel that it is a better idea for me to go to hospital 2 or 3 times a year, rather than my usual once-a-year. It makes caring for my lungs and bringing up my LF a lot easier.

Regarding the rest of my well-being:
Except for the fact that I am EXTREMELY tired and still have some head aches, I feel wonderful.
This morning, as always, I did my breathing exercises. The little mucus I coughed up was a milky white - which is excellent! Usually it is a green-yellow colour with a very thick consistency. 

Netball started 3 weeks ago. I am very sad that I missed the first few practices, but as of next Monday I will be up and running - literally! I can't WAIT to exercise again.

Furthermore I am happy and thankful and just glad to be home again.
The whole situation with the possibly infected insulin needle gave me and my family and friends a huge fright. But everything is fine now. We serve a wonderful God!

I am studying full-on again and will be returning to work next week Monday.

Let us not forget to pray and say thank you for everything God blesses us with.

Happy Living
Breathe and Believe
Nina
xXx

Testing for HIV - because of a possibly contaminated needle

Dear Readers

Today was supposed to be an awesome day - the day that I go home after a two weeks hospital visit where I got intravenous treatment for my lungs.
But something happened last night...

I am on Lantus insulin and I use 12 units each night. So every night one of the staff members bring me my insulin - which they keep in their fridge with the other patients' meds.
So last night I took the pen from the sister and just before I stuck the needle in my thigh I realised  - Woah! This is not my insulin pen? It belonged to a 77 year old man who stays in one of the other rooms in my ward.

I showed the name tag to the sister and she apologized and went back to get my insulin pen. So I injected 12 units and went to bed.
This morning it occurred to me: If they brought me the pen from another man, what stopped them from using MY  pen on someone else?
I do not change my insulin needle every day - I change it after 3 days. Therefore there now was the chance that I used (or, during some time for the past two weeks have been using) a needle that was used by another random person!

Luckily my doctor came early this morning and I told her about the whole episode last night. She was extremely mad (at the staff) and said that it is completely unacceptable for them to make a mistake like this, (which of course - it is)!

For a moment she thought and then she spoke the dreaded words: "We'll draw some blood and test for Hepatitis B and HIV."

I have to be honest here, I am struggling to keep it all together. I just want to burst into tears every second of every minute, but I try to keep myself together. 
All the "What if"'s keep on racing though my mind...
You never think that something like this could happen to you.

I am just praying that everything will be okay. I trust God and I will keep on having faith.
The tests will come back tonight or tomorrow morning. Lets hope and pray for the best.

Much Love
Happy Living
Nina
xXx

CF and studies - My University Story

Being a CF is hard - but manageable.  I have already told my primary/childhood school story and everything I had to go through back then. And soon I will tell my high school story. But since I am at university now, I will firstly tell my uni-story.

You know that all so common question people ask you: "What do you want to do when you grow up?"
Now my answers have always been one of the following three: a doctor, a teacher, a climatologist / meteorologist.

One of my great passions in life is nature, but to be more precise - the weather. I love clouds and thunderstorms and hail and tornado's and lighting and rain and snow...
I would rather prefer a dark, thunderstormy day than a bright, sunshiney day. I think I got the passion from my father. He too is a weather fanatic. I even have a book with different types of clouds in it - and I would write down the date on which I have seen that specific type of cloud for the first time, next to that said cloud. It is a father-daughter-thing.

BUT, getting a job as a white, female meteorologist would not have been easy. I would have either worked in Johannesburg, Cape Town or outside of my home town. With only three possible options and me being put in a situation where I had to take leave for a few weeks to go to hospital, this didn't sound like a very good idea. It was a bit too complicated a situation.

My other great passion is Biology and the human body. I have always wanted to be a doctor - because I basically grew up in the hospital (referring to all my hospital visits, check ups, and and and). I appreciated my doctors so much, that I wanted to be one of them too. My role models!
BUT, needless to say - being a doctor means hard hours, no sleep, and being around sick people most of the time. How would this have affected my life as a CF? Definitely not positively. I have spoken to my doctors as well and they too suggested that I rather go for something else.

My third passion in life is teaching and being in a wonderful, social situation where I can laugh and love the people around me.
As a high school student, I have always enjoyed school. Yes, I was kind of a "nerd" (though I am not sure what standards or scales people use to distinguishes between nerds and "cool" people,) and I did very well in metric, got my 8 distinctions in my various subjects and was even appointed under head girl of the school. I loved my teachers and friends and always felt comfortable in that type of environment.
Another plus point was the fact that I had vacation 4 times a year, which means plenty of time for hospital check-ups. 
I also l.o.v.e. teaching. It is a passion I have! 
This was the occupation for me.
And that is what I am currently studying for:

I study through Unisa - University of South Africa. Unisa is a distance education university, which means a student studies primarily on his/her own. Therefore you have to have lots of self-discipline and be able to set fun aside, go to your room and open your books for a daily study-session.
The course I am doing is a General BA, and I major in Maths and English. This is only my first year, as I have taken a gap year last year to get my health on track.
The advantage of studying through Unisa is the fact that you can continue your studies  while in hospital. Think about it: how would I have gone to uni today, tomorrow, or the past week? I would have missed all my classes and tests and lectures.
But now I am here in the hospital, sitting on the bed with all my study material with me, and I am right on track with everything!
(as a matter of fact - I have just completed one of my 5 modules earlier today! yay!

So when it comes to CF and having a job some day, I would say that it is very important to consider your time spent in hospital v.s. the amount of leave you can take. You have to prepare yourself for your future and think about these kind of things.

Happy Living

Breathe & Believe
Nina xx

Lung Function drops with 17%

Okay, so I did the LF test and my lung function has gone down with 17%.
Here is a quick comparison between my stats in February 2013 and now.

February:
Before admission:
LF before using Duovent inhaler = 49%
LF after using Duovent inhaler = 51%

After the two week admission:
LF before using Duovent inhaler = 67%
LF after using Duovent inhaler = 71% !

Now: July:
Before admission:
LF before using Duovent inhaler = 51%
LF after using Duovent inhaler = 54%


So yeah, 71% was the best it has ever been since the very first time I was admitted. I am also not surprised that my LF has gone down that much. Because that is what happens all the time.

Just to inform you: I have, in my first 17 years, never known that I was SUPPOSED to be admitted. Everytime I went to the CF clinic they ask:
'Have you been to the hospital lately?'
to which I replied: 'no, not in a few years,' to which they then replied: 'Oh good! So it is going well!'

So in 2011 I was admitted for the very first time to receive the 2 week drip. But that is another story for another day.

Right now I just want to bring you up to date with what is up and happening here in my hospital:

- The doctor gave me Meronem for my IV. Usually I am on Taziject, but in February, just 5 days before going home, I got a massive reaction and my arm got a red rash which burned like fire. So she decided it would be best to try something different, which is still the same.
So far everything is awesome!

- I am also receiving physio twice a day which helps boost my lung function.

- I am 1.88 (oh gosh, I have grown an extra 2 cm!)
- Weight is 63.7kg, which is very good as well.

All in all, except for my lung function of course, the doctor is pretty happy.

Happy living
Breathe and Believe
Nina

Hospital Time

Tomorrow I will be going to the hospital for my 2-week drip session. This will be my second time this year. My last hospital visit was in February. Usually I go once a year, but the past month I have coughed up more mucus than usual. It has a thicker, greener consistency, so decided it will be good to visit the hospital again.

When I left the hospital in February my lung function was 71. I know it has dropped quite a lot since then (like it always does), but lets hope I will be able getting up to 71 again in the next two weeks.

Stay posted for info on my current lung function.

Happy living

Breathe and Believe
Nina

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