Lifes Great!

Hellooooo again to all you faithful family, friends and followers.   

I have been home a week and it has been marvellous.  

In this last week I have found myself being able to do things I have not been able to do in a very long time….at least six months, if not longer.

At the weekend (last weekend) my mum and I went shopping and I walked up and down the mall for at least two hours.  Yes we did stop for a breather and lunch, but the fact remains that I was able to enjoy myself, browsing and trying on clothes that I can’t afford to buy…but it really felt good to be able to do that.

I have groomed and worked my horses…not just looked at them, patted them and said ‘hello’ to them – but really spent time with them. 

I cooked supper last night and had fun making my own concoction with whatever I could find in our vegetable garden.  I walked myself to the garden and looked around, cutting here and snipping there to add to the flavour and aroma of my special sauce.  I was a bit surprised to find one of our tortoises hiding amongst the rosemary and lavender and decided to overlook her for my kitchen cuisine…haha

So it has been a good week and with effort and hard work I am looking forward to improving my lung functions and gaining more weight.  The point in my life that I am today though would not be possible if it weren’t for the support system I have behind me.  My parents and brother, who have always been there, nagging and cajoling, moaning and encouraging, and at times I have just wanted to run away from it all.  The doctors give me the facts and lecture me in the most endearing way, spelling things out in a sugar coated nutshell, but at the end of the day it is really up to me as to to how I decide to take all this nagging and lecturing.  The Bible has many teachings for us to follow and the book that probably has more advise in it than any other is Proverbs.  Soloman was the wisest of all mankind and throughout the book of Proverbs he differentiates between the wise and the fool.  Chapter 12 verse 1 is an example of one such snippet of wisdom, where he wrote under the inspiration of God:  ‘Whoever loves discipline loves knowledge, but he who hates correction is stupid.’  I know that this is true in my life… I have to be disciplined to take my medication, do my physiotherapy, exercise and eat correctly because if I don’t do all of these things, my health will deteriorate more rapidly. 

This last visit to hospital, the first time at Charlotte Maxeke, I met some young adults like me and it was great to be able to spend time chatting to them.  We can relate to each other, we know what the others are going through like no-one else does.  The support of family and friends is so important in our lives, but they don’t fully understand as each of us do what it is that we are going through.  These friendships are different to those I have with anyone else and just as you need a gym buddy or a walking partner, I need them and they need me….a discovery that in my wisdom I choose to embrace…  

So for tonight, this is me Fabulous and Fighting <3 xxx <3 

Below are A few badly taken Pics  of my stay in hospital with my fellow CF sufferer Friend, Juan West'

                                                                        Me and Juan

My attempt at french Plait on Sister Barnard. Lol

                                                         Skype Session with mom

                                                         Pack up ready to go home

Define the great Line

Hello My fellow Readers

I am going to catch you up on the happenings of my first week at Charlotte Mokexe Hospital.

Wednesday last week, mom and I drove through to CM hospital for my admittance. The bakkie was absolutely over laden  We looked like a Durban Taxi. I had two big bags which were about to spring open, a shopping bag full of medications, my kangaroo bag, Laptop bag plus my handbag and Ipad. We were most definitely over the Limit in terms of weight. Good thing I was not going by bus :-D But hey, I needed to be prepared, you NEVER know what you might just need

After mom was chased away, I got settled into my room. My new home for the following 2 weeks. My brain was screaming at me, convincing me this must be a mistake, I am not going to survive this. A zombie apocalypse came to mind. But then I came back down to earth and Defined the Line between imagination and reality .

Later that day, all the usual things happened, taking of bloods, Lung functions. I however did not have any needles put in for a drip until Thursday morning. I spent the rest of my day learning the ward, finding out where the medicine rooms were, whilst trying not to get  lost.

On Thursday, Sister Furlonger (very Nice sister, despite alot of assumptions that have been made) decided it was time to put in my butterfly needle into my Portacath. That is when the first blow of bad news decided to grace us with its presence. After almost 3 years of usage, my Port has finally blocked. So in the interim until I am able to have surgery to have the old one taken out and a new one put in,  I am having to be stabbed in the arm every couple days when a new drip is inserted. :-(  
Later that day, I learnt how to mix my medications correctly. I now have a degree in Mixology. Dr Baird and Sister Furlonger said to me yesterday, that they are very impressed at how I am looking after myself and doing my meds. Yay me! Time for a Nody Badge.

During the course of the last few days, 3rd year Physiotherapists have been using me for their exams. It has been alot of fun, yet exhausting at the same time. I am using today to have a nice relax and catch my breath. 
On Monday I had Elisma, and the poor dear was an absolute wreck. She was beyond nervous. I even contemplated giving her some of my oxygen :-) Luckily for me though, her first choice patient was there, so she used him. I am just waiting for their results to be released, and she said that she would let me know how she did. lets all hope she passed.

Even though Elisma's patient was there and she didn't use me, I did not get away that easily. Marilee's first choice patient decided to leave, so she rushed to my room to break the news. She was using me for exam. By the time the examiners arrived, I think I was more nervous than she was. Her exam went off very well, however for me, the exercise she did with me nearly killed me (figuratively speaking), I did a step exercise, and climbed 71 stairs in 4 minutes, if I remember correctly. It could be longer. But anyways. That was that day done and dusted.

Yesterday, was a very interesting day. My next Physio had arrived at about 10am, and her exam was only at 2pm. But Carrie decided that she just wanted to chill and have a relaxing morning with me. I didn't mind at all. Unfortunately for Carrie though,that was not the case. Earlier in the day, Dr Baird had come in the results of my Sputums, and we Finally had 3 sensitivities. The first sensitivty I couldn't use the med, as I had a vial reaction to it in july. It was Piptaz,I think. So It was decided, I would have my stat dose of Keftaz. 

A stat does, as I have learnt, Is a quick high IV run through of the first batch of the Medication. So What happened was, 2grams Of Keftaz was put into a 100ml Saline bag and run over an hour. Now normally Keftaz is run over 8 hours in a 200ml bag continually. So you never disconnect the drip, you change the IV bag.

So getting back to the actual story. About 10 minutes in to the first Stat dose, my arm started itching, but I didn't think anything of it. About 15 minutes in, I turned to carry and asked her if my face was red as I was starting to feel rather warm. Carry said yes, they are a little flustered, but she couldn't really say. The next minute, my arms started itching profusely , I told Carrie and she said 'must I go call the Sister'. I said No, lets just leave it for a little bit and see what happens.

In an instant, my ears felt like they were on fire, and fingers were bloodshot. Carrie looked at me, and I looked at her. We had a silent mutual thought. Carrie dashed out of the room hysterically looking for Sister Furlonger. They both arrived back and Sister F lifted up my shirt and looked at my back. I don't know what she saw, but she asked what it was it? Like a mosquito itch, or a general over itch. So I told her all over. By this point, I could not stop scratching, but the more I scratched, the more I itched! The drip was stopped instantly and I flushed it out with Hep Saline. Sister F returned with 4 Renatidine pills, 2 Antihistamines and 30mg of Prednisone. I was literally jumping out of my skin, I was boiling hot and Itchy all over. Even down to my toes! If Carrie and I were in the animal Kindom, we would have looked like we were two Baboons doing a dancing ritual, hands everywhere, trying to scratch my itchy spots. Haha.

Eventually all the meds kicked in and I got drowsy. I felt terrible as the exam was in an hours time, and I now wanted to sleep. Luckily I was able to catch a few Zzzzzz for half an hour, and woke up in time for prep for the exam. It went of without a hitch, and I was even able to jog on the spot for 5minutes.

I am hoping I will be able to go home in the next couple of days to finish my treatment there. But time will tell.


So now before I get carried away, I shall end off in saying that, No matter what is thrown in my direction, there is a plan for me, and I will get through this. Especially with all of your support.

I hope to see you all soon.

This is me, Leaving a few photos...and Fabulous and Fighting harder than ever \

xoxo * <3 *




                                               My Bedroom

The Ward

A long walk to FREEDOM!

Hi everyone, I thought I might update you all with a few thoughts before I am admitted to hospital tomorrow as I am not sure what the reception will be like in my ward and whether I will be able to go on line.

Friday last week was a nerve-wracking day for me, and not for the first time I might add.  I had booked my drivers test...yet again and this time I hadn't told anyone I was going as I have had previous disappointments and to explain  to people over and over all the time is just so exhausting.  Little did I realize, that my dad had actually broadcast to the whole world via e-mail, that I was going, so it wasn't as much of a secret as I had thought.  This time though, I am happy to say, that I passed!!!!!!!!!

      



 Oh the feeling of freedom is wonderful...at last I can spread my wings and fly....no more having to ask mum or dad to drop me off somewhere, I can just drive myself there all on my own.  All I need now are my own wheels and then I will really be independent.  For the time being though I will have to borrow my parent's vehicles, which I guess is in itself a good thing because I will be sure to drive the speed limit...and not take chances overtaking...and keep checking that incessant 'mirror, mirror, mirror, blind spot, malarkey.  Not having your own vehicle gives you added responsibility to your life, because you can't mess up and drive like a maniac in someone else's car...not that I would, but I'm just saying.






I am beginning to understand how age and wisdom fit together, like a hand in a glove... my entire life I have been told I have to take responsibility for my actions, which is not something a 5 year old understands, nor a teenager wants to hear...so finally all this 'responsibility'stuff is taking shape in my mind.  It's not something we all learn at a certain age, and it's not something that we suddenly wake up one morning and discover we have... like chicken pox or the measles... it's something we gather together over time and through experience.







I think I can safely say that I have had to accept responsibility and suffer the consequences far more regularly than most of my peers.  If I didn't exercise and have regular physiotherapy, then I would soon feel my lungs clogging up.  If I hid my pills away - which was fairly often I admit - when I was eating lunch at school, then my tummy and everyone around me would know it.  If I don't drink my shakes and watch my kilojoule intake every day then I lose weight so quickly it's actually scary...so I reckon that at age 22 I am almost a responsible person...  I say 'almost' because there is bound to be a time sometime in the future when I may be just a little silly.  :)  






So for the first time, in a while, this is me, Fabulous and Fighting :-D 
           
                           

Pains of all kindsl

Last week was definitely a very interesting time in my life...other than the fact that because of a major storm we had the previous week, we had and still have,  no internet access.                                 On Wednesday I had an appointment with the surgeon who inserted my PEG, to measure me for a 'mickey' PEG.  It was all supposed to be very simple...according to the doctors...however it didn't turn out that way at all.  The idea was that the tube initially inserted would be pulled out, the measure inserted and the tube re-inserted - lots of insertions there but anyway!!!!!  Soooo the surgeon started pulling on the tube which felt quite tight at first, but the longer and harder she pulled, the tugging tightness turned to pain...excruciating PAIN.  A final tug and out popped the tube with a monstrous, okay it wasn't that monstrous but it felt like it, cup like end on it.  Needless to say I almost broke my mums fingers with that final jerk and I cried like a baby.  Out of a pencil size hole popped this 2cm end and the surgeon looked at it quite bemused.  She was most apologetic and as amazed as me at what she had proceeded to yank out of my stomach.  Measuring was simple in comparison, but it had become apparent that the tube that had just been removed was not going to go back inside me, so she had to find another , smaller and simpler tube to be inserted to be used until the 'mickey' PEG has arrived and is put in...                                                                                                                               The next major happening in my life, was almost as painful...but a different kind of pain indeed.  My boyfriend and I split up....It was all very amicable and we have decided to stay friends, but it just wasn't working out for us.  This has made me think in the last couple of days of the pain that we all deal with in our lives. For some it is physical and for others emotional.  At some point we deal with both kinds in our lives and we all have to cope by ourselves, picking up the pieces in some cases and pulling ourselves together...re-building our lives...moving forward...whatever it takes to deal with that pain.  AND no one can tell us what we are feeling or compare their pain with someone elses because we all feel things differently.  As for my emotional pain, I will heal with time....the physical pain has already healed, just a memory...something that lingers in my mind but I know longer feel.  So next time you hear someone talking about their particular pain, lend an ear and listen to them and  don't compare your pain with theirs because it's not about you...or me... At that time, but theirs.                   So this me, once again, *Fabulous and Fighting* <3

Saying Good Bye's Isn't Easy

A week ago, yes can you believe it...it was last Wednesday that I had my first appointment at Charlotte Maxexe (or something like that) Hospital.  I was pretty nervous as I always am in new situations, but at least I had the support of my parents who went with me.

We borrowed a wheelchair from our neighbour for me to use as it is becoming increasingly difficult for me to move around now.  This simple piece of machinery proved to be a challenging item for my dad to wield.  Firstly he couldn't get it into the boot of the car, turning it upside down, inside out and back to front before he managed to find a spot for it. Hehe.  Once we were at the hospital and he had managed to take it out of the boot, he had to open it up for me to sit in it...that took a while, much head scratching, huffing and puffing - but eventually it was ready for me to take my seat on my new throne.

Our visit was exciting and informative and I am oh so keen to start on this new chapter of my life.  Sadly this did mean that I would be saying 'goodbye' to my family of 7 years at Steve Biko Hospital.

This happened the very next day when I had my final clinic visit at Steve Biko and I really felt very sad to be saying 'goodbye '-  BUT hopefully not forever as I have forged friendships with people there that have created bonds in my heart and soul.  Without the team that makes up the whole, my days at Steve Biko would never have been as happy as they most definitely have been and I thank them from the bottom of my heart for always making me feel at home and well cared for.

This is another chapter in my life that is over, written in my memory bank, waiting for the next one to evolve.  This one will surely be the most eventful one in my life...one that will see me grow into a new person, hopefully, and one that will carry me through to more in my life.

By the way, back to the wheelchair...my dad has passed 'Wheelchair 101' and is progressing to 'Wheelchair 102'...the one where he does actually open it and doesn't make me sit in the tiny gap he manages to squeeze open and wiggle myself in to pop the chair open.  GO DAD!!!

SO this is me, for tonight, Fabulous and Fighting <3 <3