Music Monday

I absolutely love this song, and after I listened to this arrangement a couple of times (I wasn’t convinced at first) I loved this too. Piano Guys are definitely one of my favourite Youtube discoveries!

And all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?

101 in 1001 (#48 Buy a new laptop)

Seven months after abandoning this blog (AGAIN!) I have reemerged! I am not dead and haven’t fallen off a cliff!

My parents have just spent three months visiting me here, so I COULD use that as an excuse for why I haven’t blogged, but really, it’s just because I’m lazy and a bit crap!

I do have an update today though, on my 101 things in 1001 days! I think I’ve pretty much given up on being able to do ALL of them, but I figured I can probably still do some, and will end up having done more than I would have done otherwise anyway!

Anyway! Part of why I’ve started blogging again is because I now have this! A new laptop! Finally! One that WORKS and is fast and new enough to actually work properly! Hooray! *excited*

So yes, you will probably be hearing a little bit more from me in the not too distant future, now that I no longer have an excuse not to post! x

Walking towards Hope

Hi, I’m Holly, and every day of my life I struggle with negativity.

For as long as I can remember, even before I got sick, I have been not just a glass half empty person. I’ve been the type of person who worries about leaving the glass somewhere it could tip over and spill, or even worse, fall off the table and break, and then not only would I have broken glass to deal with, I’d probably stand in it in bare feet and get tetanus and DIE!!!

Yeah. I think you get the picture.

Obviously, this type of personality doesn’t lend itself to dealing particularly well with a serious illness with an unpredictable prognosis. I am simply not one of those people who takes everything in stride, never stops smiling, and lives their life determined to make the best of things. I know some of those people, and I admire them a lot, but I’m not one of them. I am A Worrier.

I wish I wasn’t. I wish it so much that I named my entire blog after a concept of creating something beautiful out of something broken.

But, in reality, I struggle every day with fear, anxiety and negative thinking. If there’s something to worry about, anything at all, I will find it and gravitate towards it, regardless of how much of a stretch it might be, and how illogical it might seem to other people. I have good friends who I talk to about this, but ultimately there’s only so much “unloading” that it’s fair to do. They have their own lives and things to deal with.

Counselling has helped, to a point, but I still can’t shake the feeling that by now I should be better at coping, I should have made some headway into dealing with this, and figuring out how I’m going to live the rest of my life with chronic illness as part of me.

There has to be a reason I haven’t given up entirely. A reason why I’m trying to continue a normal life, why I’m not still at home in NZ wishing I could do more but too scared to in case I was “too sick”.


I think this is why. For me, it’s not hope of one day being cured, or even of getting a transplant call, but hope that eventually, one day at a time (or even one HOUR, in some cases!), I’ll have more good days than bad.

“You used to be pretty”; how Prednisone changed my life.

This is a post I’ve wanted to write for a really long time. It’s one of those topics that’s been in my head (and my drafts folder!) for ages. I keep coming back to it because I’m convinced that I cannot be the only person who has felt this way. I know some other people reading this are going to get it.

If, on the other hand, you read this and find yourself thinking I’m shallow and petty to be so worried about how I look when “surely there are more important things in life” – you’re probably not this blog’s target audience anyway. Lucky you.

Before I got sick, my knowledge of steroids was limited to knowing that wrestlers and body builders used them to grow insanely huge muscles, and come to find out, those aren’t even the same type anyway!

After I was diagnosed, and found out that treatment was going to be a combination of high dose steroids and a chemotherapy drug (Rituximab), the first thing I did was turn to Google. 

I’m not sure whether that was a good idea or not, because¬†I found out pretty quickly what Prednisone does to you. Weight Gain. But even though I knew this in advance, I still wasn’t prepared¬†for what actually happened to my body.¬†


I have never been slim. I am 5’5″ tall and in January of 2012 I weighed approximately 70kgs. I didn’t love my body, but I was more or less ok with how I looked.¬†

The more steroids I took and the longer I took them for, the less recognisable I became. It’s like I looked in the mirror and somebody else was looking back at me. Unless you’ve experienced this, it’s impossible to explain how strange it¬†was.¬†Even now, in 2016,¬†the photo on the right is strange to look at.

Obviously, I was not the only person who noticed this change. Fortunately, the vast majority of people in my life were extremely sensitive and were either concerned, encouraging, or said nothing at all.

But. There are exceptions to every rule, and, unfortunately for me, one¬†of these exceptions was somebody I¬†didn’t realise would be¬†one.

I don’t remember the entire context of our conversation, or exactly what we were talking about when she said it, but¬†I’ll never forget one of the most hurtful things anybody has ever said to me.

“You used to be pretty”.

As if I didn’t feel ugly enough.

I know someone’s value shouldn’t be bound up in how they look, and I don’t know that mine ever truly¬†was. Sensible Holly knew that this weight was just a side effect of medical treatment I urgently needed, but that I would eventually be able to stop, and¬†when I did, the weight would disappear¬†as quickly as it appeared – almost.

But somehow, even with this in mind, and with many more sensible friends to tell me this person was full of shit and needed to be ignored, it bothered me.

It still bothers me now. So much so that I briefly considered not writing this post.

Fast forward to now, in 2016. I’m currently on a very¬†low dose of Prednisone¬†(7.5mg) and have lost all the weight I gained, along with a bit more besides.

Day to day, I feel ok about my appearance. I know people don’t look at me and think I’m ugly, I don’t catch them muttering under their breath “Look how fat she is”.¬†

And yet, it’s still there. That underlying feeling, fear almost, that one day I’ll wake up and look in the mirror and that¬†sick, fat, ugly self will magically be there again. Some days I think it always will be.