Lived Experience Forum

[PinkFlamingo]

Thanks heaps @Shaz51 🙌🏻🙂

they should help - I’ve had literally hundreds of them all over, so I think it’ll work. 
I’m not on high dose IV glucocorticosteroids or immunotherapy/etc at the moment, so I’m sure it’ll have maximum effect. 

I hope it goes well with the bone tests and consideration of the injectables for bones 💜🙂🌺

That’s really nice it hear you’ve found something that helps, too 🙌🏻☺️

I got a call from nephrologist.. he moved my appointment from late august to 7:30am (omg why so early haha) next Tuesday when he gets back from holidays. Apparently he’s wanting an urgent chat. Did the bloods etc today, so all the results should be there. 
currently looking for my third haematologist - nobody knows about rare diseases in Au really. I’ve been chatting to some uber-specialist haematologists in the States, but nobody really is 💯 on what to do next (according to statistical info, there would be a grand total of 78 people in Australia with the same condition). 

Anyway, I just had this new bread I bought because it was on sale - never had it before - it’s by a brand called Katoomba (after the town, I guess? 😉), and it’s called Roti Bread…fry it in a pan and it’s fluffy and soft and a tiny bit crunchy too. A very nice treat 😋

How’s your afternoon going? 🙂

[Shaz51]

Heyyyy @Jynx 😁

Back home now thinking 🤔 about dinner @PinkFlamingo 

[Shaz51]

I am in trouble again @PinkFlamingo , @Jynx 🤐

[PinkFlamingo]

Sounds good @Shaz51 ☺️🌺

what’s on the menu? 😋

[Shaz51]

Shepherd pie @PinkFlamingo 

[Jynx]

@Shaz51 oooh yum! What kind of trouble though? Or is the pie (and inability to resist its deliciousness) the trouble? 😅

[PinkFlamingo]

Oh, lovely - shepherds pie sounds excellent 😋

[PinkFlamingo]

What trouble would that be @Shaz51 ? 🌺

[Xibon]

Hi all!

I've been terrible at replying since the move, but this is as good a chance as any to share and update.

Easter was incredible. I managed to get to the beach, see family, do an Easter egg hunt for my kids, go to the MCA, Garden of Friendship, and my favourite building here (the QVB), as well as cram in some time to play video games to my kids and read a good book. A great follow up to last weekend (a concert!)

@PinkFlamingo I'm going to have to try that roti - I love cooking Indian cuisine!

@Shaz51 the photos of the creek you shared look simply magical!

@Tilz I can't believe that sky!

Here's some snaps I took recently

[PinkFlamingo]

Hey there @Xibon ☺️🌺

soo great to hear you’ve had opportunity to enjoy yourself over Easter - that’s really nice to hear 💜

If you like Indian foods I think you’ll really enjoy the roti 😋

thanks for sharing those pics - looks wonderful! 🌺