Wednesday, April 16, 2014

Storms so far

Just a few pics from my phone of adventures so far. Went on boat trip into the sea (where sea got so rough we had to cut trip short!), and hiking. We also we to the town Plettenbergbay today for some shopping and lunch but I didn't take any pics on phone. Enjoy!

Monday, April 14, 2014

We have arrived

After 11 hours of driving on Sat, a stay-over in PE for the night and another 2 hours on the road yesterday we have arrived at our destination. Still pretty tired but now the resting can begin.

Friday, April 11, 2014

I'm on holiday for 3 weeks!!!

so excited (or know I will be once the tiredness has subsided). Never been this tired (emotionally) in my life! R&R will be  very welcome.

Tuesday, April 8, 2014

Positive things

The week started on a rough note... on Monday morning my car's battery was flat so I couldn't drive myself to work :-( Luckily it got sorted without too much hassle. Also my on-again-off-again cold turned into something a bit more serious, so decided to see my Dr today. I'm glad I did because a) got antibiotics so that I'm ready for holiday, b) it has been decided that I will skip photopheresis this week and spread my last 2 sessions over 2 months.... so end of April and end of May. and c) for the first time in at least a year and a half lung function did NOT drop at all. Not the normal 1 or 2% drop of late. Did 3 attempts and all were exactly the same, 58% FEV1% and I think the FVC was 97%, slightly up. So week has definitely improved from yesterday.
 
Now just to survive 3 days at work and then BLISS! The pics below are from work (apart from the kitty one obviously). Our new financial year started on 1 April so we all got a balloon and a muffin. (Purple and white are the Co colours)

 



Sunday, April 6, 2014

6 sleeps...

Almost there... 6 sleeps to go till holiday from heaven. Last week felt like a week from hell. Monday's photopheresis hit me on Wednesday and throat was soooo sore and just felt sick. Whole week was also spent working late with month-end. And battles with Discovery medical aid regarding 3 of my photo sessions last year. Eventually I took to complaining on twitter and got 2 calls immediately so hoping they sort their crap out now.

This weekend has been OK... highlight was shopping with a friend. Got flu shot too, did lots of laundry and cleaning, and had to go in to work this morning :-( Just too much to get through this coming week still so tried to take some of the load off.

Coming week will obviously be filled by WORK WORK WORK, and making sure we have everything for our trip, including getting a script for malaria pills for the second part of our holiday at Mapungubwe and shopping for Storms. Also need to renew my car licence disk and do some LONG procrastinated body corporate stuff. Going to be DEAD tired by end of week! And then another set of photo just to put cherry on top on Friday!! Just holiday is just in time of I would be heading for a nervous brakedown.

WISH ME LUCK!

Tuesday, April 1, 2014

Liebster Award

I was nominated for a Liebster Award last week by my friend Fawn (follow her on twitter  - @Fawn_Rogers)! She received her lungs a year ago and recently joined the blogging game as well! You can see the answers she gave to her nomination here.



When you’re feeling down what do you do to cheer yourself up?
 Hanging out with great friends and shopping is the best way to cheer me up!

If you could meet any celebrity (living) who would it be and why?
I'm not a big fan of celebrities in general but my favourite film star has always been Johnny Depp because I think he's a great actor and find him very attractive! I have also met local radio personality Gareth Cliff when I was a guest on  his show once and wouldn't mind meeting him and his team again.

What is your favourite thing about blogging?
Reading my OLD posts and seeing how far I've come and how fortunate I've been.

What’s your favourite cocktail?
Mojito and once had a watermelon and basil one that was amazing.

 If you won the lottery what would be one of your compulsive buys?
An overseas trip across Europe!

What’s your favourite part of your body?
Tough one but probably my feet because there's nothing I can find wrong with them, unlike the rest haha!

What have you always wanted to do but never have?
MANY things.... love adrenalin pumping activities, so would love to hang-glide or skydive. Also would REALLY love to visit New York one day.

What did you want to be when you were growing up?
A music composer

If you were to set up a charity what would the money go towards?
Cystic Fibrosis and Transplant research

If you could only stay on one social media network, which one would it be?
Facebook... connect to the most friends on there and been on there the longest.

What word do you always find difficult to spell?
Collueges (I can't even spell it now... it's meant to be the word for co-workers)

11 Random things about me:

  1. I'm not a big pasta fan.
  2. I'm a very fast and crazy driver even though my car has very little power.
  3. My first name is Noline and I hate it.
  4. I can't whistle.
  5. I have never played a team-sport.
  6. I had an imaginary friend called Cinderella (Aspoestertjie) when I was little... I even knew in which house she lived.
  7. I can be very impatient
  8. I studied BA General for a year including psychology while I was waiting for transplant.
  9. I wish I studied something in the medical field and could work in that field rather than accounting.
  10. I'm not a big fan of dancing.
  11. Apart from the medical advances and technology we currently have, I often wish I lived in a different era.... anywhere between 1700 and 1900 I think.
My Questions to you (OR ANYONE WHO READS THIS BLOG AND WANTS TO COMMENT FOR A CHANGE!!):

  1. If you could have lived in another time when would it be?
  2. Where do you want to travel to (if you could pick one destination)
  3. What is your favourite food
  4. Do you have an irrational fear about something
  5. What annoys you most about other people?
  6. What do you want to achieve most in 2014?
  7. What are you most grateful for?
  8. Where were you born?
  9. What is your favourite movie?
  10. If you could spend your days doing ANYTHING, what would it be?
  11. What normally surprises people about you?
I Nominate the below bloggers:

Amy - http://mycfjourney.blogspot.com/
Niqi - http://fabulousandfightingcf.blogspot.com/
Kirtsie - http://kirstie-2ndchanceatlife.blogspot.com/
Piper - http://amatteroflifeandbreath.blogspot.com/
Jamie - http://jamiebug.blogspot.com/
Anna - http://www.annabananasvarietyshow.blogspot.com/


RULES!Remember this award is all about showing love and getting attention to the blogs/bloggers who have under 200 followers and deserve to be noticed. IF you choose to accept this award make a post with the following to keep the love going: Your acceptance speech which includes the name and the link of the person(s) who nominated you. -They need love too!. Answer the 11 questions listed by the person who nominated you .List 11 Random facts about yourself. Nominate 11 of your favorite blogs (add the links).Last but not least, ask 11 questions of your nominees.Spread the love!

Sunday, March 30, 2014

Cape Town weekend

The weekend was a very nice break! Landed at about 21h00 on Friday night, went to our hotel and just slept after catching up a bit. Yesterday our meeting started at 9am and ended at abt 15h00, and then I managed to see Louzanne who drove from Stellenbosch for a drink and much needed catch-up! We had supper (awesome fish curry) at the Waterfront and again just passed out as soon as we got back to hotel! This morning we left the hotel at 10h00 for the airport again. It has also been confirmed that the National Transplant Games will take part from 9-11 Oct in Stellenbosch! Not sure what my health is going to do and if I'll take part but will take it a month at a time.

Tomorrow is 4rd last session on photo and then the rest of the week will be MONTH END at work and CRAZY.






Thursday, March 27, 2014

Below 60... eeekkkk

So yesterday's check-up went great in terms of bloods and blood pressure and O2 sats and weight (gained 2kg, yay) etc.... but not so much the lung function. FEV1% is now 58%.... was hoping it wouldn't drop below 60% but it did. So the trend of a 2% drop per month continues... I have 3 sessions of photopheresis left (last one on 24 April)... after which  would have had 24 sessions. For now I won't be continuing with that, as 24 sessions are the standard and doing more than that probably wouldn't be of much benefit. So the plan is to continue testing my lung function every month and basically take it as it comes in terms of other treatment options.

I must say I'm surprisingly OK with it all. Glad to be finishing the photo in terms of my veins and sick leave (or lack thereof!!!) and the logistics of going to Pretoria every 2 weeks. Will miss the staff there though. Also so excited about our holiday coming closer (9 working days left!!!) that nothing can really upset me right now. My action plan is as follows:

  • carry on eating enough and keeping weight on
  • gym as much as possible and staying fit (weight training going well, cardio not so much...)
  • RELAX AND ENJOY our holiday
  • be ready for what the lungs may decide to do next... continue declining slowly or stabilizing properly??? And do what needs to be done.
This weekend I'm going to Cape Town as mentioned in last post and then Monday photophresis. Have a good weekend!

Sunday, March 23, 2014

Long week ahead!

Having Sunday eve blues thinking about the week ahead, especially lung function on Wednesday. Can't afford to have it be down more!!! Also have a mild cold which keeps coming back, but hoping it's gone for good now. Ugh just wish it's Wednesday already, the waiting sucks.

This weekend I will be flying down to Cape Town for a SATSA meeting, so that's something to look forward to at least. The past long weekend was also nice, just relaxed, watched some movies, did some gardening and shopping. Also went to gym on Thurs afternoon and today.

Will report back on Wednesday's results.... wish me luck!

Friday, March 14, 2014

Another week closer to holiday....

Not much to report on.... only good thing about the week is that work was OK and in total I've been to gym 4 times since Sat. So that's good!

Saw psychiatrist on Monday, he is happy that anxiety is under control and don't have to see him again for 6 months. Had photo #21 on Wednesday, and it didn't involve any unnecessary needle pricks which is always a plus. I only have 3 more treatments left for this session of 12... so my Dr needs to decide how treatment will commence from here, which is a bit scary. Going for lung function again on 26th which will obviously influence their decision too!

Woke up with sore throat this morning but at least it's weekend now so hopefully by Monday it's all gone. No other plans yet for the weekend, just some things that I want to get done before the holiday and hopefully it stops raining!!! (It's been wet and miserable for more than 2 weeks now!!)

Sunday, March 9, 2014

Fawn's 1st lungaversary

Just 2 pics from last nights celebration, only attended first part of the evening (being all old and married hahaha) but was great fun and impressive venue... Sandton Sun hotel... almost like Vegas vibes! May you have many more Fawny!!!!


Saturday, March 8, 2014

Month end over and award

Worst week of the month at work is over, yay!!! Thank goodness... soooo tired now! Luckily I slept in this morning so that helped. Went to gym this morning for the first time in 5 weeks or so... was hell!!! But I least it's a start. Will go again tomorrow as I didn't do much today so hopefully by end of week I will have started to gain some fitness again.

So exciting news.... my blog got named as one of the top 35 CF blogs!!! Check it out here... so exciting!

Tonight it's my good friend Fawny's 1 year lungaversary party! Going to fun, and had hair coloured and treated today so going to be nice to dress up and go out! Below pics are of my PC at work... starting to get so excited about our holiday that I changed my wallpaper to the view at Storms River :-) One month and 4 days to go!!!! Also some pics of me and my 2 male kitties that sis took. They are my children!!