Tuesday, April 26, 2016

Small update on me and 2 other CF Bellas

Had a pretty good weekend, didn't do much apart from the picnic at Emmarentia Dam for Pierre's birthday and a trip to the mall with my mom on Sunday. Feeling better than I did on Thursday and Friday, but still have sinus pain/headaches and still feeling a bit more short of breath than I usually do, but have more energy and feeling less "sick".

Update on the two sick CF Bellas that I blogged about previously.... Natalie is doing much better and has gone home, yay! Levern is not doing so well however, see update below made by our mutual CF friend Charlene (on photo below Charlene is on the left and Levern on the right). Please keep her in your thoughts.

I hope you all are well! I would like to ask you a huge favour...my longtime friend LEVERN EDWARDS who is also a cystic fibrosis sufferer is not doing so well in ICU.. she is a fighter like all terminally ill patients are..but I would like you all to give her a helping hand by praying now more than ever! She really needs all the love and support we can give her! I know I have requested this before and I do appreciate all the prayers, love and support so far...! BUT NOW MORE THAN EVER SHE NEEDS GOD!!!! Miracles do happen... being a living one myself like so many others...I know he is listening..! Please share this post so we can get loads more to pray!
Thank you

Friday, April 22, 2016

8 Years 3 Months today!!!

Wow! What a lot of months! Next month is going to be quite a big one, will have to celebrate somehow.

Haven't had the best week, like I said in Wednesday's post I've been soooo tired. Went to see my amazing Dr yesterday and he confirmed that I look "miserable". Probably a virus or something. Luckily I didn't get admitted, got meds to take home and had quite a bit of blood tests done to rule out other possible causes of feeling bleh. Slept 12 hours last night so feeling quite a bit better today at least! Spending the whole day in pajamas :-)

We don't have much plans for the weekend, today is my brother-in-law Pierre's birthday, so we'll be celebrating that tomorrow. HAVE A GOOD WEEKEND!!!!

Wednesday, April 20, 2016

Parys and stuff

This weekend we went to a town that's just over an hour's drive outside JHB called Parys (Afrikaans for Paris). It's become quite a popular destination for antique/art shopping and weekend breaks. We stayed in a house that we rented with friends. This has been the fourth mini-trip with the oxygen concentrator, rather a heavy bugger to transport around but obviously worth it.

Been feeling rather tired since Sunday afternoon, sinus pain the whole time and just feeling bleh. Taking it extra easy this week. Had biokinetics yesterday and it also went a bit crap. Maybe due to the flu shot that I had last week Thursday.

We've been having an amazing response to our Love Life; Gift Life Facebook page, almost 1,000 likes since Thursday evening! If you haven't liked our page yet please do so! A lot of work happening behind the scenes and we're so excited.

Sunday, April 17, 2016

Love Life; Gift Life

A few weeks ago, my friend Shaylene and I decided that more needs to be done to raise awareness for organ donation in this country, and that we think we can make a difference. We got fellow lung recipients Fawn and Siobhan involved too, and the result is our new baby Love Life; Gift Life. It is going to be a non-profit organisation (once all the paper-work has been sorted), focusing on sharing the stories of organ recipients and those on the waiting list in South Africa, as well as doing everything in our power to raise awareness as much as we can.

We feel that stories of real people are powerful, and people can relate to it. And that the most important thing regarding organ donation is that you need to SPEAK TO YOUR FAMILY about it, because even if you're registered as an organ donor, your family has the ultimate say, and if they don't know what your intentions were it means NOTHING. 

We are really really passionate and excited  about this. We feel that we can make a difference. I've been passionate about this since I received my lungs over 8 years ago, and it feels like now this will be channeled in the right direction, rather than doing little things here and there trying to promote organ donation as much as I can with random things. 

If you're on Facebook then please like our page, and if you're on Instagram please look for us @lovelifegiftlife . Also, if you're a local transplant recipient or on the waiting list and want to share your story email me at alice@lovelifegift.co.za 

Hoping to make a difference... change perceptions and get people to realise that organ donation affects everyone, it's such a small decision to make with potentially such massive benefits to so many people. It's a topic that shouldn't only be discussed once someone in YOUR family needs an organ, or when a loved one passes away and you're suddenly confronted with it. Wish us luck!!! 

Monday, April 11, 2016

Healing thoughts needed for Bellas

Firstly, I would like to ask for prayer/thoughts for two of the CF Bellas that were featured in our CF calendar last year... Natalie and Levern. They are both pretty seriously sick in hosp right now. Can't even visit due to the seriousness of their infections and the risk of getting their bugs. Please send them healing vibes!!!!

Life has been rather quiet over the last few days, haven't been up to much except go out for brunch with our friends on Sat morning. And feeling REALLY tired, meh. Today was a bit better at least but yesterday I thought I could sleep for a week, and sinuses are soooo sore. Very annoying! At least brunch was really cool!! Tried a new place in Parkview called Croft & Co. The food AND coffee was AMAZING. Was also great seeing Brendan and Andrew again after their skiing trip (jealous!)

Tomorrow it's dermatologist and biokineticist (after I cancelled Thursday's appointment for being too tired). Hopefully less sinus pain and more energy tomorrow! Have a good week people!

Thursday, April 7, 2016

What's been happening

Been rather busy since we've been back from our holiday, nothing wildly exciting though. Had hair cut.... it's been falling out A LOT in the last few weeks... I'm not sure if it's due to meds I received while in hosp in Jan/Feb, or due to something else.... change of season??? Either way, it's annoying as hell. So I had A LOT cut off. It's just below my shoulders now. Hope the hair-loss will stop soon!

Had a dr's appointment on Friday, lunch with Andrew and a friend from work, a transplant sports meeting and a braai with a friend waiting for transplant and her hubby on Sat, some medical tests yesterday, grocery shopping.... so just STUFF.

I did however find the below very cool items that are very definitely ME:

 I also finished another blanket, and I think it looks great!

Had a rather big medication victory, the antibiotics that I need to nebulise with, Colistin,  has been approved by medical aid :-) It's been a LOT of admin to get this approved, as you also need government approval to be able to use it. You also can't just get it from any pharmacy, it has to come from a specific one, Had my first delivery on Friday, and this is what a month's supply looks like: HAPPINESS!!!!!

It's been pretty cold the last 2 days, so kitties are being snuggle bunnies. When they're not busy terrorising each other that is. Was supposed to see the biokineticist today, but feeling TIRED and bleh. So will go again on Tuesday. No other plans for the weekend.