Friday, July 28, 2017

Andrew's birthday, Jo-Mari's visit, prepping for Aug and small update on the lungs

I've been so "busy"! It's great :-) By busy I mean I did one activity per day. It's all relative. Two weeks ago we celebrated Andrew's birthday with a bang! I had lunch with him on the day, and on the Friday night we went to Beefcakes in Illovo. It was such a blast, I've never had as much fun sitting down and watching a show! Had to turn my portable O2 up all the way to 5 litres!!! (Normally on 3 or 4 litres). I was useless the following day, but it was well worth it.

I received the most amazing "Open me when" package from my cousin Mia in Jeffreys Bay! It's such an awesome concept from Rare Diseases! It's a bunch of parcels with instructions like "Open me when you're scared", "Open me when you're hungry", "Open me when you're in hospital" etc. It's amazing, so far I've only opened two, so still a few to look forward to!

My university friend Jo-Mari who works in Quatar was here last weekend, so got to catch up with her as well. She had a stop-over in Joburg on her way down to PE. Such a treat.

My sis has gone back to work, so seeing much less of my cutie-pie nephew :-( Will be seeing him this weekend at least! It's my sister's 30th birthday tomorrow!!! The two of us will be going to a spa tomorrow afternoon for some pampering... wish I could make full use of the spa facilities... ie the pool, but will be freaking awesome anyway. Unfortunately I broke my stupid nail off yesterday when I picked up my laptop, so good luck to whoever has to do my nails!

I also met another lung-friend in real life this week... Martie! She has Pulmonary Hypertension. Was great finally getting to chat properly, although it wasn't for long. We will def be doing it again.

So this post is basically my life in pictures it seems... sorry! Don't really have anything substantial to say. I had a lung check-up a week ago. The only thing that has changed is that my 6 minute walk test results were crappier. I could walk the same distance (a little further than last time in fact), but my oxygen sats on 5 litres of portable O2 dropped to 77%, VS 85% in April. Saturday was exactly 9.5 years post transplant for me. Ten year lungaversary getting closer and closer...

August is going to be super busy, it's organ donation awareness month! (as well as my birthday month!!) Love Life; Gift Life has soooo much planned in terms of raising awareness in Johannesburg hospitals in collaboration with various transplant coordinators. It's going to be a good month.

Thursday, July 13, 2017

Fitness declaration, dreams and nostalgia

Today I miss exercising a lot. Intense exercise, not the sad weight-lifting that I currently do. Spinning, playing squash, running... It's been 4 years since I've been able to do this properly. Four years of gradual deterioration. Preceded by 5.5 years of the most amazing breathing ability ever known to myself. I miss it SOOOO MUCH and wish I had worked harder at my fitness when I had the chance. It wasn't easy with working full-time, but I wish I pushed myself harder. I should have played more squash, done more spinning classes, just more of EVERYTHING CARDIO. 

There is nothing like the feeling of your lungs FILLING with air, and your heart beating, not because you climbed a flight of stairs and want to pass out, but because you are ALIVE and MOVING. I think it's taken me 23.5 years of shitty breathing, those 5.5 years of brilliant breathing, and these 4 years of losing it again to totally appreciate and realise how brilliant it is and how it should never be taken for granted. 

If I ever get the opportunity to breathe freely with healthy lungs again, I will make it my goal to push my body to its physical limits. I will try new activities, I will join a squash club... I want to run further than before. I want to do spinning again! I want to SWEAT! I am able to do so little at a time now, that I haven't sweated properly in AGES (except when my blood sugar drops too low, but that's a whole different topic!). I swear there will be no stopping me... 

This is what I dream of... it keeps me motivated. It pushes me to do what little I can right now. One day I will escape this frustrated feeling... one way or another. Until then these daydreams (and sometimes actual dreams at night) will keep me going. Patience... it will be worth it.

Tuesday, July 11, 2017

Meeting Carmen in person & Louz and Wouter's visit!

I've had an amazing couple of days. It feels like my birthday or something with the friends that I've seen and the unnecessary presents that I've been surprised with! Feeling very lucky and blessed right now. Louzanne and Wouter arrived just before lunchtime on Friday. Chris and I picked them up, and we met up with Chrislie, Adriaan and Andrew at Paul for lunch. On Friday evening we had a games night ar Brendan's house which was so much fun.

On Sat we had a bit of a historical tour of Pretoria. We went to the Union Buildings and Melrose House. It was followed by a Starbucks and a completely different kind of Pretoria culture! On Sat eve we had supper at Casalinga, an Italian restaurant in Muldersdrift. I've only been there once before but the food is AMAZING. We weren't disappointed. Super busy but awesome day!

On Sunday we spent a chilled day at my parents' house. We also watched the movie "A United Kingdom", which is a must-see!!! I was pretty wiped out after Saturday's activities. Yesterday we had brunch with my sis and Adriaan in Melville, before heading for Constitution Hill. I've never been there before, and so glad I was finally able to! We didn't have time or O2 battery-life to see all of it, so need to go back at some point! If you live in Jozi, you really need to go on a guided tour there!

So all in all a brilliant weekend! Miss my friend so much, wish we lived closer to each other!!!!

Today I got to meet a NEW friend in person!!! Carmen!!! We've been chatting for a few months now, and she's in town at the moment to we met up! Yayness! It was great, like we've known each other forever. I was so spoiled with gifts, and completely unprepared to return the favour! Next time! I must say, since I stopped working and have gone onto disability, I've met so many amazing people through Love Life; Gift Life and just in general (like Carmen). Each chapter of life has it's own surprises and benefits. Trying to look past the annoying-ness and frustration of my current HEALTH situation and appreciate the quality time I've been able to spend with amazing new people and my favourite "old" people.

On a sad note though, a girl that I knew who was waiting for lungs too lost her battle on Friday :-( I wasn't expecting it to happen and really hoped that she would get lungs :-( It gives me more motivation to work hard on LLGL, but at the same time it makes me feel so hopeless and like we're fighting a losing battle sometimes... *sigh*

Sunday, July 2, 2017

July - past the halfway mark

We're in the second half of the year!!!! It doesn't have any real significance in my life but hopefully the second half of the year has some good things in store for us. VERY excited because my long-time friend Louzanne and her hubby Wouter are coming for a visit!!! Just because :-) Arriving at around lunchtime on Friday, and leaving again late on Monday afternoon. I'm not able to be very physically active, but we will be EATING GOOD FOOD.

It's also LLGL's #save7lives week, which is going to be an even bigger success than last year! Hopefully it raises some lasting organ donation awareness. Please feel free to participate! (check out our Facebook page/ Twitter/ Instagram tomorrow for details).

Last week was a bit of a blur, a few of our meetings got rescheduled, so it went a bit differently than planned. On Monday Chris and I went to have our driver's licenses renewed. It has to be done every 5 years. When I renewed mine in 2007 I was on the waiting list for lungs, doing really unwell and didn't own a portable O2! My mom took me then, and it was quite a mission. It was in PE though so the building was a lot smaller and a lot less walking (almost no walking) was required. This time it was quite a bit of walking that was needed, more paperwork somehow, and luckily I had the portable O2. Once we had all our paperwork sorted, we were told to go upstairs to join the que. Just as I got to the top, huffing and puffing away... they said I can go to the disability line downstairs! Went back down (luckily Chris could join me), and luckily there was only one other person in front of us. So from there on it went really quickly, They were super nice to me, even asking if I'm warm enough, and asking me if I'm OK while Chris went upstairs again to pay. At least that bit of annoying admin is out of the way now! Also... I've been driving for 15 years this year... that's just under half my life. Yay for outliving expectations.

I also saw Adriaan quite a bit. Soon he will be in day-care as Chrislie will be returning to work towards the end of the month... so need to make the most of this special time with him!

I also made a scrap-book of all the magazine and newspaper articles that I've been in (and that I have kept) over the last decade. I've never done scrap-booking, but Typo had this "kit" on sale, so I thought it's worth a shot to keep these memories safe. It was rather fun to do. Definitely not a hobby that I would take up, but for this album thing it was good. I will stick to crocheting and make useful items rather :-p

Lastly, I bought these new boots on Friday... I've given a lot of clothes away since I stopped working at the beginning of last year, gave a few of my old work clothes to my sis, organised my cupboards and been trying not to buy any unnecessary clothing. However when I saw these boots I fell in love... They were on sale, but still the most expensive shoes I've ever bought! They are so perfect... warm, comfortable, leather, soft... Now I literally HAVE to live for a really long time still to make this purchase worthwhile LOL!!! I don't want to take them off... they make me want to walk and they make me feel strong... Like I'm in my own little army :-)