Liver Update

Just a quick update, my liver levels have been consistently normal for the past 3 months. This, my friends is exciting news and I’ll be off steroids within the next month. I’m also hoping that because my liver’s had a break from being inflamed and aggravated, that it will be able to fix some of the damage that has been caused. The liver is awesome like that.

Health wise I have been going from strength to strength. I’ve started exercising regularly and have been socialising like a maniac to make up for lost time. Which, now I’ve had my fill, definitely needs to calm down because soon I’m hoping to be in full time employment.

I need to learn to listen to my body properly because I do this to myself every time I’ve been poorly.

I get sick, I take time off to get better, go crazy with things to do and then end up tired and sick again because I just haven’t paid attention to those subtle clues.

You’d think that having lived with IBD since I was 19 I’d finally get the messages, but I’m stubborn and have acquired a few terrible habits such as not wanting to seem as though I can’t do everything that people my age are doing, and also, just not knowing when to say no.

This time round has been the longest I’ve had to take out from work, even after my operations – which seems crazy – but unfortunately, this time round really hit me mentally and so it took me longer to recover.

Going forward my plan is to try and strengthen my immune system/liver as much as possible so that in the next two years I can come off Azathioprine. Some of you may know from previous posts how much I hate being on medication, so the thought of lifelong medication doesn’t exactly fill me with joy. I also don’t exactly like the thought of being on Azathioprine for the next few years. The drug can cause some pretty nasty side effects long term (I’m looking at you increased risk of melanoma and lymphoma) so the sooner I can get off it, the better.

No doubt I will keep you all updated on experiments.  I did try some Ayervedic practices mixed with some Chinese herbs but as I was on steroids as well, I couldn’t actually see if it was doing anything or if it was the steroids just doing their thing. So I stopped. I still have some left over so may try it again, it can be tricky though because the last thing I want to do is try something that will upset my liver and the majority of my consultants aren’t thrilled with the idea of alternative medicine practices, despite finding that they have helped my IBD quite a bit.

I find it can be very complicated, all the doctors I have come across in London, bar one, are very adamant that alternative therapies do not work and have discouraged me to use any. However in Australia I met a few that were quite open to certain types of therapies and as I said above, it really helped with my IBD.

I would like to research a naturopath because some peeps that I used to see in Melbourne were incredible, but I found them through recommendation, which I have found the best way for alternative therapies. It helps to weed out the weirdos and the ones who really don’t actually know what they’re talking about.

I remember once in London trying an acupuncturist who was mediocre at best but didn’t have a reference to compare it to. It wasn’t until I was taken to one on the Gold Coast did I realise the help that acupuncture can be. You can read the post here.

So yes. In short, things are on the up. I still have a long way to go but I’m getting there, albeit very slowly.

Stay well

x

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

-x-

 

 

 

 

I’m sorry, I don’t have any glitter

When I wrote my previous blog I was really inspired to write again. I had high aspirations for myself; had made lists. I had loads of ideas on what to write and with the time off I currently have, I was ready to throw myself in and get cracking.
Except the last few weeks have been really hard and I have found myself in quite a dark place. Steroids do not help my mental state, it seems that every course I go on, the side effects are worse. I’ve been on 40mg for the past 8 weeks and I really can’t wait to taper off them. Battling with low moods (and that’s a nice way of putting it) in general is hard enough without medication sticking its unwanted nose in too.

“Heeeeey you” depression eyes me up with a hint of a smirk, “I brought friends”

Anxiety gently shakes in the corner, whilst Medication takes his jacket off and climbs into bed with me.

I protest

“But I have to get up, I need to make breakfast, shower, go for a walk, I’ve got things to do. I don’t need, no, I don’t want you here”

Medication strokes my hair and Depression sits at the end of my bed.

“Why would you do that? You don’t need to do any of that.” He looks at me whilst lighting up a cigarette.

“You can’t smoke in my room, get out, go away” I try to sit up.

Medication puts his arms around me, nuzzles in closer. Depression chuckles, whilst Anxiety decides she wants a piece of the action and gets into bed too.

“Seriously, get the fuck out of here”

“Temper, Stephanie. That’s not very nice is it?” He spills ash on my bed. I sigh and close my eyes, realising he’s not going anywhere.

I would regard myself as a positive person, a fighter. I don’t want to be here talking about all the things that are wrong with me or the things that I can’t do but it seems as though that would be an unfair representation of the illness/struggle.
It is not all motivational pep talks in my head about how I can fight this and how I will get better. The last few weeks have more been on the side of “what’s the point?”
That’s awful! I don’t want to feel like that. I don’t want to wake up and just listlessly go through my day with Depression holding my hand, Medication on my back and Anxiety running in cirlces around me. I’m tired of friends asking me how I am and my response isn’t a positive one because I really want it to be positive, I really want to say “I’m not 100% but I’m getting there”

I’m afraid I don’t have any sparkles of good news for you.

But this is the reality of it and I thought I’d share with you what’s going on so that if any of you are in this position right now, you don’t feel so alone.
How am I coping? Well I’m trying to cut myself a little slack. There is a lot going on, mentally and physically, and beating myself up about not feeling particularly chipper is not going to help me.

It’s all about those baby steps. Small things that help me to feel a little better. That could be anything from reading, a cup of tea or a chat with a friend.
Keeping busy. Or at least trying to. I’m a little limited in what I can do without my body saying “nope, had enough buddy, you’re taking a time out” and sitting me down. Having said that I don’t want to mope around in my pjs all day so I go for walks, take really rubbish pictures on my iPhone, meet friends for tea. We’re always coming back to tea. I research things about Ayurveda medicine and the immune system.

I read lots of blogs and soon I will be getting involved in all things Christmas. Side note. I love Christmas. I used to hide and grumble about not really giving a fuck but truth be told I really love the festive season. Glitter, mince pies and festive cheer. Love. It.

It’s not much, and compared to what I used to do (hold down a full time job and an active social life) it’s pretty meagre in comparison.
However, that’s just the way things are right now. Its better that I accept it than try to fight it and make myself feel even worse. It’s just a temporary state and I’m sure that in a few months I’ll look back and all this will just be something that I went through and came out on the other side.

I’ve rambled enough so I will bid you goodbye but for any of you who are struggling out there know that this too shall pass. Nothing is permanent and hopefully soon we’ll all be back to throwing out sparkles and glitter. Till then here are some things that made me smile recently.

♥  Filter coffee from Federation at Brixton.

♥ Flowers. I went to a flower market recently and brought some beautiful peonies. The day was lovely and I got to catch up with a good friend, drink tea and have lovely chats.

♥ Today some random dude in Brixton looked over at some pigeons, then at me and said “ooo, pigeons” as though I had never seen them before. I smiled polietly, willing the lights to change so I could run away.

“Very spiritual, that.”

A massive flock of them flew into the sky and he goes “oh look, some sparrows.”

No dude, still pigeons. Change, lights. For the love of God, change.