Friday, April 18, 2014

So far, so good...

Firstly, thanks to the people who commented on my last post, and who Tweeted at me saying they were glad I have reappeared, it's nice to know that people actually still read, even if these posts are a bit strange and disjointed seeming - I feel like I'm relearning how to blog!

Secondly, I do have a little bit of a health update! I had my third round of Rituximab (my first here in the UK) last Friday, and it was extremely uneventful. I spent almost all day there, and, much like I did last time, felt completely fine. I was a bit "wired" that night when I got home, but otherwise ok. The only relatively minor issue was the three hour delay I had between arriving at the hospital and actually starting treatment, thanks to the specialist supervising me getting caught up in an accident on the motorway and being very late to the hospital to review my bloods and sign me off as healthy enough for the infusion! Oh well, it didn't really matter.

On Monday I went back to the clinic and I'm pleased to say that it actually went quite well!

No big changes yet, but I wasn't expecting any, since I've really only just started everything again, and the latest set of blood results they had were still pre-Rituximab.

The biggest change was that my CRP markers (for inflammation, and representing whatever the joint pain I had was) have dropped down from 30+ to less than 1! This means the steroids are working, which is good, even if it also means we might never find out what caused them to be so high.

Speaking of steroids, they've now been reduced from 40 to 30mg per day. I was surprised by this, as I didn't expect it so quickly. I was also a little freaked out, as I'm convinced that stopping them all together contributed to me relapsing in October! I absolutely cannot afford to have this happen again as I don't have enough kidney function left. Fortunately, the nephrologist seems to agree with me on this, but is also keen for me to be on the absolute lowest dose possible, to avoid other complications. It's pretty much like walking on a tightrope!!

I'll see him again in clinic in about 5 weeks (give or take an extra one because of a bank holiday), but also briefly next Friday when I have Rituximab again. So yes, so far so good. I'm happy with how things look like they're progressing.

Oh! One more thing, just in case you don't believe exactly HOW fine and bored I was last Friday, I'll leave you with a little video I took as they were swapping battery packs on my IV thing. Lookie! It's my pulse! #abitgross #butfascinating #yesiwasbored

video


Photobucket

Thursday, April 10, 2014

5 Months?

Yeah...oops! It would appear that I have managed to abandon this blog for a dubiously impressively period of five months!

This wasn't deliberate, I never intended to NOT blog, but I think because once I stopped writing about traveling, I sort of felt like I had nothing left to say.

I also think it's because since I last wrote, something else has happened in my life. My FSGS has come back.

I first discovered this in the middle of October, but nobody really did anything until a couple of weeks ago, as they wanted to wait and see what was really going on, and if it would resolve itself over time, which it hasn't.

At some point, I will have the mental and emotional energy to fill in some more details, but at the moment, I will say that on the whole, things are kind of ok. I feel well, I am about to start a very good job, and I have absolutely no desire to give up and go back to New Zealand.

Will I have to do this? Eventually, probably yes, but maybe not straight away.

Last week I started steroids again, and tomorrow I will start Rituximab. This is the same treatment I had at the beginning of 2012, and the way I managed to get into remission for almost a year.

Although I am realistic about the fact I'm "sicker" now than I was then, and slowly and steadily heading towards needing dialysis and a kidney transplant, there's also a tiny bit of hope. Maybe this will work again. Maybe this will be Second Time Lucky and I'll get another year, or even more, before I'm too sick to...stay here and work full time and do everything I so badly still want to do with my life.

I know this day will come, probably a whole lot sooner than I thought, and definitely sooner than I hoped, but still, it isn't today.


Photobucket

Saturday, November 9, 2013

InstaFriday

life rearranged
I'm @kiwiholly if you want to follow. :)

 
(L) Love the Christmas wrapping paper I bought today. I know it's EARLY, but I need to be organised to post stuff home in time! 
(R) My first time to buy #yankeecandle candles! They don't sell them in NZ! These aren't for me though, they're for a friend's mum. :)

 
(L) A friend that I have known since we were 3 & 4 years old. The top photo is from 1997, and the one from 2011. It makes me smile.
(R) An Instagram about this.

 
(L & R) I really rather enjoyed my first experience of Bonfire Night in England! :)

 
(L) Hello beautiful new boots! Hopefully you will be arriving at my house in 3-5 working days! Hopefully you will also fit over my apparently quite wide calves, otherwise I will be very sad.  
(R) Just me, and a massive turtle hangin' out on a beach on the big island of Hawaii. Oh! And a guest appearance by the ROUNDEST GLASSES EVER!! Also, I totally wish I was still this tall and lanky. Apparently ALL my body was legs!!!

 
(L) So yesterday I discovered I was awfully blue and stripey!
(R) Half an hour after I took this photo, it poured down!!

 
(L) Now I want to go to the gym RIGHT NOW!! 
(R) Best pajamas EVER!!! 

 
Somehow I doubt this cenotaph will be finished by Sunday. :S

Photobucket

Thursday, November 7, 2013

Blogember: A day in my life

I decide to approach this blog post by taking a bunch of photos throughout today, even though I didn't do very much, other than hang out with the cat, do a few errands in town, visit a potential possible job, and then come home, sit down and write this post!

Although, as you'll probably notice, I was quite a bit more enthusiastic at taking photos in the morning than I was tonight, when I may or may not have forgotten! Oops. :O

8:31am: Time for a furry wakeup call!
8:54am: I have fallen a tiny bit in love with this Minnie Mouse mug!
9:47am: Downloading a map.
9:53am: I suddenly realised that blue stripes seen to be my theme of the day!
11:13am: Who says England never has blue sky!?
11:43am: According to Starbucks, a duffin is what happens when donuts and muffins breed.
12:33pm: Spotted this in Next. Teehee.
12:53pm: First world problem alert! I had to put my jacket on inside as the M&S food hall was so cold!
12:56pm: Almost standing in the middle of the road to take this? Yes. Yes I was.
1:03pm: Apparently this refurbished cenotaph is going to be ready for Remembrance Sunday. Yeah. Maybe not?
1:39pm: Inside the art gallery, looking up at all the storeys. I love all the colourful layers.
2:32pm: About to go in to visit potential new work. :)
9:50pm: Writing this blog post!
Photobucket

Wednesday, November 6, 2013

Blogember: 5 7 favourite apps

Facebook
Surely it should be a bit obvious why I love this app! It's probably the first one I open when I look at my phone in the morning.
I love it for sending messages to friends at home too, way cheaper than texting, and I don't have to worry about disturbing them at a random time.

Bloglovin'
I love this app for quickly scrolling through my blogroll, and then going back and flagging the ones I want to comment on as unread.

Instagram
I may or may not be a tiny bit addicted to this app. I post on it most days, at least once! (@kiwiholly, by the way) :)

Twitter
I'm a fairly frequent iPhone Tweeter as well, though not as often as FB and Instagram.

Timehop
Timehop is amazing. I love looking at it every day to see what I was doing on that day 2, 3 or 4 years ago. It makes me smile.

Cuptakes
My classic go-to choice for iPhone wallpapers. I love how cute and colourful they always are.

Google Analytics Dashboard
I just downloaded this one relatively recently, and I quite like it for being able to quickly see who has been reading my blog and which posts and pages they've been looking at. Yes, lovely readers, I do just like to spy on you! ;-)

Photobucket