Curve Ball

Bloody hell it’s all popped off innit?!

In the last few months I have gone from no job, trying to plot ways to kill my landlord, generally meandering aimlessly and trying not to have anxiety attacks in my local sainsburys, to moving house – but still trying to plot ways to kill my landlord- finding and obtaining work, moving from that job to another, starting some voluntary work for Crohn’s and Colitis, being out till all hours seeing friends and generally having an awesome time.

As previously mentioned I was in a bit of a dark and twisty place but things have levelled out… Well in fairness they’ve sky rocketed into the other extreme of being so busy that if I lost my diary I would sit in the road and cry.

So imagine my surprise when I received a quite ominous voicemail from the gastro consultant who saw me in clinic a few months ago stating that there was something wrong with my bloods and that she’ll detail it all in the letter she was sending me.

Cue me trying ever so hard not to freak out and try to deal with it when it came. Not quite successful. If I could have turned up at her house shouting “WHAT’S WRONG WITH MY BLOODS” I would have. The Gastro team are like elusive mythical beings. Where the hell are you when I need to talk to you? Why do all of your numbers send me to voicemail or leave me on the phone for 20 minutes wanting to smack my head off a wall till I realise that no one is going to answer this phone call.

So I had to wait it out, I received the letter and low and behold, my liver is still trying to make a break for it.

I feel totally betrayed by my body. I honestly feel fine, better than fine, God fine is such a beige word, fabulous? No, too extravagant. Great feels underwhelming. Hmm Amazing?

Do you like the really redundant train of thought I’m expressing here? Also that I’ve wasted a minute of your life whilst you read those sentences? THAT’S HOW I FEEL ABOUT THE GASTRO TEAM!

Eurgh. I digress. Apologies.

So my bloods are weird and they want me to go back on steroids.

Ha.

Hahaha.

No. Way.

You’re going to have to hunt me down and stab me with an IV before I willingly put that into my system.

Wait, I’ve been here before… and I ended up with Jaundice and in hospital attached to said IV.

I retract the above statement. Can I please not have Prednisolone and can we try Budesonide please Mr Gastro sir?

Compromise.

Which to be honest doesn’t seem to be happening with my team at the moment. It’s all “Take this or lose your liver” Scenario. “Take this, we know it works” rather than, lets try and restore your liver but in a way that doesn’t turn you into a psychotic dark and twisty hamster. (see this post on roids for an explanation)

So I was pretty sad, then I was angry… briefly considered the denial phrase but with me that involves copious amounts of alcohol so I skipped that and I’m now at the acceptance stage.

It’s all about management and looking after myself. Which if I’m honest, I’ve been so excited by my life at the moment that I haven’t really been taking very good care of myself. Yes, I know that makes no sense as we all know that I’ve been in this place before with my IBD, yes I am painfully aware that I should be better at this. Stop looking at me with those judgy eyes. I see you. Stop it.

I’m only human.

And I’m young. I want to have fun. I want to do things and I certainly don’t want to feel trapped by my condition.

But as a couple of friends pointed out to me, they’d rather me make a few sacrifices than see me in hospital or not even around.

Sometimes you need a friend to give you that verbal smack across your head. I said oops upside your head I said oops upside your head.

I got verbally bitch slapped. But its necessary, and I know its because they care about me and you know what? I’m so damn lucky to have friends who will do that for me.

*sigh*

Some changes will be implemented and I’ll have a chat with my gastro team, if I can find them, maybe I’ll send a carrier pigeon. Maybe that’s the only way they correspond?

I’ll keep you posted.

 

 

Roid Rage

Steroids.

Tiny white pills sent from the devil. Necessary for my recovery – in fact life saving – but extremely debilitating.
When I had what I thought was to be my last dose of steroids back in July 2010 I could not have been happier. I’d been on steroids on and off for my Ulcerative Colitis for two years. Steroids controlled the inflammation but I’d always flare once I’d come off my course. Towards the end I’d start to have symptoms when I’d get to about 10mg, so when I had my Jpouch operation I remember being so excited and looking forward to being medication free.
Just before I left for Australia I had been having issues with chronic pouchitis, and my surgeon and I  were discussing the options of going back on because the copious amounts of antibiotics I had been taking weren’t helping – I flat out refused. I had experienced 3 years of being medication free, there was no way that I was going to back on them.
I managed 5 glorious years of no medication. September of 2015 saw steroids reintroduced into my life and my body has been through so much to compensate the dose that I am on.
I don’t even know where to start with the insane amount of side effects that I am experiencing, so let’s do some lists. Lists are good, comforting, they bring order. Yes, let’s start with a list.

♥ My face is a mess.

No seriously. A full on, HOTMESS. You experience this weird symptom called moon face where your face becomes puffy and fills out.

I was in a&e on a Saturday night a few weeks back – yes friends, Saturday night in a&e is as horrific as it sounds, there are a lot of drunk people shouting “I’m going to be sick” whilst they are trying to escape from the bed, whilst also trying to dance. It was a weird time and everywhere smells like vomit – and I managed to come across a doctor who had seen me before. We were having a chat about my chest pains and he said “I remember you, you’re a bit chubbier than when I saw you in May” and gestured too my face.
You’d think that I’d be able to brush it off considering that was the least of my worries at the time, in was in my PJs in a&e for chest pains at 3 in the morning on a Saturday night. But it stung. I’m hyper aware of the fact I look like a hamster hoarding food for a bleak winter, I’m also very aware of my next point.

♥ Unwanted facial hair

What the hell. I am half Greek and so have dark hair, for the past few months I have been sporting a rather fetching female moustache. Its not as prominent as a male one, she’s sneaky, she quite fine, but nonetheless, she is there in her proud glory. It comes accompanied with some light peach fuzz on my jaw/cheeks and bizarrely a patch of it above my right eyebrow.Why are you there? You are neither my hairline or my eyebrow, and why only on one side? I have burning questions that have no answers.

♥ Acne

Lots and lots of acne, over my face, my arms and my back.

♥ Weight gain

I’m just turning into a ball. A round, spotty, furry ball. In truth a hamster. I’ll keep you posted on the claws.

♥ Mood swings

I am cranky as hell. Something very tiny can set me off at any point. Take for example a lady on the coach who was talking quite loudly on her pohone with her dad. Sure it was annoying, but I had worked myself up so much that I was shaking. The rage was insane, I wanted to turn around and scream “NOONEGIVESAFUCKABOUTWHEREYOUVEPLACEDTHEDRESSERINTHEHALLWAY” tearing her phone away from and throwing it off the coach.
I didn’t, because that’s the kind of shit that gets you hospitalised or in trouble with the police.

♥ Panic attacks and anxiety

I used to suffer from panic attacks when I was about 14 and would have the occasional bout of anxiety but it wasn’t, I was about to type ‘ wasn’t an issue’. I know now of course that it was, but the attacks didn’t happen regularly enough for me to feel like I could talk about them. Also, at that age I didn’t know how to raise that subject. It was never so bad that it stopped me from being able to live my life and so I just continued as I was.

♥ Exhaustion

Hey old buddy, old friend, old pal, you are not new to me. I’ve battled you for years but this had me holed up in bed for quite some time.

♥ Shakey hands

So much so that I can’t put eye liner on for fear of poking out my eye. Lame example, I know, but my eye liner is my ‘trademark look’. I put on make up in attempt to make myself feel better about looking like a hamster, but when you can’t because your hands shake too much, it then becomes a battle, which is exhausting. You want to feel some sort of normality, but when your hands are shaking so much that you worry you’ll end up looking like this Make up

You sort of just accept that make up isn’t happening and resign yourself to avoiding all mirrors and reflective surfaces.

These days I’m on 20mg so luckily the shakes have stopped and have recently been able to put on proper make up once more. Which is great, because the moon face, acne and facial hair I’m told will stay until I’m off them completely. Great. Someone teach me how to contour please.

I also nearly cut my finger off trying to make dinner. Lesson learnt. a) When shakes are bad, soup is your friend. B) why did I think it was okay to use a knife when my hands were so shakey? Once again you strive to attempt some kind of normality. No one wants to admit that they can’t do things. Its easier for us to focus on what we can do, so of course it seemed perfectly okay to try and cut vegetables.

♥ Depression

You’re a Douche and to be quite honest, I’m not ready to talk about it on here just yet. Just know that steroids don’t help it and I’m currently in therapy in an attempt to kick its ass.

♥ Insomnia

Which doesn’t help the above point. Or my face.

There are more side effects, but these are the ones that hit me the hardest. As I said above, I’m currently on 20mg and I’m slowly tapering off them which means that some of the side effects ease, but also means that where I have been on steroids for so long I have to be careful for things like joint pain because your body gets used to the dose that is supplied. So far I’m lucky and have not experienced anything too out of the ordinary.

I have another appointment on the 14th to discuss coming down further. The aim is to not be on steroids but if my liver levels start to creep up again, which is possible, I want to discuss going on Budesonide which is metabolised in the liver, hopefully bypassing a lot of the above symptoms. That, however, is something that future Steph can deal with, because right now I’m taking it each day as it comes.

What are your experiences with Steroids?

Stay well

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