Tuesday, May 31, 2016

Very quick little update

So the most exciting news in recent times is that we had someone run the Comrades Marathon for Love Life; Gift Life! He is Justin, the owner of Justin Jeffery Biokineticists the place where I go for my weekly bio sessions. It all came together very quickly but was something really cool, and hopefully just the start of more such big things.

We have also set up our Twitter page now (see side panel on my blog) so please follow us and like on Facebook etc! Need all the support we can get!

I'm currently in hosp for my regular Pseudomonas infection. Two weeks of IV antibiotics. Almost half-way at least. Feeling a lot better than a week ago already.

Can also finally post my latest crochet blanket, that was a wedding gift for Ditha and Riaan. Did a new pattern as you can see! Was lots of fun to do. And today is the last day of May!!! Where has the year gone???? It's good though cos it means Anna and Casey's visit is closer, but wow....

Friday, May 27, 2016

100 months!!!

Sunday marked 100 months with these lungs.... feels like that is a really long time!!!! Grateful for every memory made in those 100 months!

Monday, May 23, 2016

The Wedding!

On Friday we picked up Brendan at the airport and headed for Porterville! It's a small town in the Western Cape, and this was my first time there. The mountains were beautiful!

The Friday evening was an informal catch-up session... great way to kick off a weekend where the guests have come from far and wide and need some time to reconnect! Saw some university friends who I haven't seen in eight years! It was really awesome.

The wedding on Sat was ABSOLUTELY STUNNING. Ditha and Riaan are one of the most awesome couples I have ever met. I have known Ditha for 13 years and have never seen her this happy. The ceremony, venue, food, EVERYTHING was great.

So glad I went down for this, even though I feel like I've been hit by a bus now. Was worth it!

Friday, May 20, 2016

Cape Town Trip So Far

On Monday Andrew and I drove down to Stellenbosch from Joburg in really good time! Took us about 13 hours. Felt pretty short though due to all the laughing and talking crap in between!

Coped the whole way without O2 as I was obviously sitting down the whole time. Monday and Tuesday night we slept at Ditha (who is getting married)'s flat. We spent the whole of Monday night catching up until LATE! It was amazing. On Tuesday Andrew and I had some fantastic brunch at Schoon, and afterwards helped her with some wedding prep.

Late afternoon I went for a bite to sat with an ols school friend Nadia that was brilliant. 

Yesterday morning we headed for Cape Town where Andrew had to go do some work related stuff. Went to Truth coffee shop, that has a really well-known reputation, and inspired a blog post from Andrew.

In the evening I met up with other long-time bestie Carli! Had a ball of a time and went to Beluga, another amazing restaurant. We stayed with Andrew's cousin in town...  awesome location! Right in the center of all things cool in Cape Town. Yesterday we were lazy so we just ate breakfast and lunch downstairs (there are 2 restaurants below her flat) and watched DVDs. Last night we ate Taco's at a very cool place which was also great.

I was hoping the lower altitude would make my breathing much easier which unfortunately it hasn't really. But still having fun. Today we're picking up Brendan from the airport and driving through to Porterville where the wedding will be taking place. Very excited!!!!

Thursday, May 12, 2016

4 sleeps to go

On Monday I will be driving down to Stellenbosch/ Cape Town/ Porterville with my good friend Andrew to our long-time friend Ditha's wedding on the 21st. Super excited about it, they're an amazing couple and I'm so happy for them. We've been friends with Ditha for about 13 years now, so it's truly going to be a reunion and celebration of love. Sooooo excited! Wouldn't miss it for anything.

Lungs have been feeling up and down, some days better than others with no real pattern or predictability. Looking forward to being at sea level next week, should be needing less O2! Sunday was Mother's Day, we had a great lunch at my sister's house with the fam.

Other than that I've been busy with Love Life; Gift Life, coloured a (modern) pic of the Mona Lisa in for my gran, Finished a blanket (the wedding gift for above mentioned wedding!), and other domestic stuff.

Sadly the CF Bella that I previously blogged about, Levern, passed away on Saturday evening... It's very sad and my heart goes out to her young daughter and family :-( RIP Levern. CF is so cruel.

Friday, May 6, 2016

4 months to go......!!!!!

If you follow my blog every now and then you will know Anna and Casey..... they are the American version of Chris and I. Anna and I must have been twins in a previous life, and we LOOK like twins in this life! CF, curly hair, same height, similar CF story, met at the WTG 2013 in Durban, Facebook friends before then, same sense of humour, it's just insane actually.

Like I said we met in Durban in 2013, then in 2014 they came back to SA and we spent some time with them in Cape Town. In 2015 we went to California and visited them. Well..... THIS YEAR THEY ARE COMING TO VISIT US!!!!!! In Joburg!!!!!!  In September!!!

We have a whole adventure planned..... 6 days in Kruger park, 4 days at Storms River Mouth, 2 days at ADDO elephant park....and the remaining time in Jozi....Literally showing them our favourite spots in the country and in the city. SOOOOOO freaking excited, this is going to be amazing!

Cannot wait for this! Going to be the highlight of my year, definitely a great motivator for keeping well!

Sunday, May 1, 2016

May... The month of CF awareness

Today marks the first day of Cystic Fibrosis awareness month. Even though I've had a double lung transplant over eight years ago CF still affects me. I have to take digestive enzymes when I eat, because of thick mucus in my pancreas that block the exocrine movement of the digestive enzymes.

I also have CF related diabetes so I need to inject myself when eating carbs. The pancreas contains the islets of Langerhans, which are responsible for making insulin, a hormone that helps regulate blood glucose. Damage of the pancreas can lead to loss of the islet cells, leading to a type of diabetes that is unique to those with the disease. This cystic fibrosis-related diabetes (CFRD) shares characteristics that can be found in type 1 and type 2 diabetics, and is one of the principal non-pulmonary complications of CF (copied a bit of Wikipedia there). The anti-rejection meds I take like Prograf and Prednisone also does not help with this!

Since having the Pseudomonas bug in my lungs again I've also been doing some old CF routines again, like nebulising... luckily without the extra mucus.

However CF is more than just a set of symptoms. Growing up with a very bad life-expectancy changes you. In many ways. Some more than others. Most CF sufferers rebel at some stage (I did), they go through denial (I did), they are fighters (in most aspects of life fortunately or unfortunately). We lose a lot of friends and it kind-of makes you hard and hate this stupid disease. You don't have much sympathy for normal people complaining of a cold and you wish they would stay the hell away from you.

Most of the CF people I know have tattoos.... they mean different things to different people, but my one friend put it very well... she said "My body's been hurt so much and I have so many scars from medical procedures, I made the decision to put a pretty scar on my skin that means something to me". Some CF people don't plan for a future because they get told they won't live to be very old. Then when they exceed their life expectation they feel "lost". On the other hand your get those who does everything full-out because "life is short and time is precious". Also, contrary to what my medical history suggests, I'm still rather scared of needles and HATE having a drip put in.

Adulthood is more complicated, males are sterile and females have reduced fertility.... but deciding to have kids brings with it a whole new set of questions. Keeping a job with frequent hospitalisations is near-impossible (I could never do it with my old lungs). Finding partners, getting married, trying to explain everything you've learnt over the years to a new person. Getting to end-stage CF....

There are a few positives though.... since the advance of the internet, the on-line CF community has become very big. It's amazing, since we're not encouraged to be physically close to other CF sufferers due to the risk of germ transfer, so your on-line friends are often your life-line. You also meet some amazing medical people along the way... who become friends and make hospital stays so much better. Don't have much else to say... hopefully someday they'll find a cure for this.