Tag Archives: medication

Mostly Hairless.

Mostly Hairless.

Over the last year I’ve been on Azathioprine due to my Ulcerative Colitis, this is a drug that cancer patients use, cancer patients also use Paracetamol so that doesn’t mean it’s as scary as it sounds.  But….. it has meant that my hair has been gradually thinning and falling out from the roots.  People say it doesn’t look that bad and that it just looks like I have very thin fine hair and that I should’t worry about it.  After all, I’m still here aren’t I?  The thing is, I think it looks terrible.  It frizzes in the slightest breeze, it doesn’t swing around my shoulders anymore it just hangs downwards and matts into mucky brown swamp donkey blonde strands.  I hate it.

This evening I trimmed Horace’s hair and once I’d done it I just thought ‘Feck it’ and asked him to cut my hair too.  The difference being, I wanted rid of it.  ALL of it.  Britney Spears stylee, except without the nervous breakdown and the papparazi.  I’ve realised I can’t cut all of it off because I don’t have a nice hat and my daughter would disown me at the school gates, but I have cut half of it off.  Photograph included as proof.

IMG_4706

As Douglas Adams nearly said: ‘Mostly Hairless.’

I’m planning to start again.  Everyone will think I’ve got cancer or gone mad or something, but they can think what they like.  My mum and dad will probably be upset, but this is my choice.  It’ll grow back, and hopefully it’ll look more even and be in better condition.  If it grows back looking crap, then there’s no loss, it already looks appalling.  Maybe I’ll start wearing make-up so I’ll at least look very slightly feminine.  Or perhaps I’ll just look like a man in drag.

Anyway, this is a great excuse to buy a nice hat.

'Nice Hat'

‘Nice Hat’

My darling daughter found out she had nits this evening too, so I have to say that’s been a bit of a catalyst.  I don’t think I’ve got them, but this will certainly solve the problem.  Once the ‘Nice Hat’ arrives the rest of the hair will go too.  I’m just keeping some of it for the moment for the sake of the kids.  I don’t want to scare them.

The deed is done.  Everyone always says a new haircut is a great way to cheer yourself up.  I’ve decided this is my way of starting afresh.  Once I’ve had my hemorroidectomy I’ll be in remission from the Colitis and ‘fixed.’  After two years of pain, medication, endless hospital appointments and fatigue, I should be back to normal.  Except with a new hat and no hair.  Go me. *determined face*

Arse!

Arse!

I’m still here hanging around like a bad smell! For those of you who are Twitter addicts you might have noticed I’ve been a little absent recently, only a couple of days I know, but considering how much time I usually spend online it’s a noticeable change of behaviour for me.  Listening to someone winge is never fun and if I can’t say anything positive then it’s best I say nothing at all.  So I’ve saved it for here instead. This is my personal diary as well as my official ‘blog’ and I suppose if I record this now, I’m hoping I’ll look back on it later and think ‘there, I got over that and everything’s better now.’  I hope.

I don’t owe anyone an explanation, and I suppose most people won’t be interested really, but I’ve always felt blogging is therapy as well as fun, so I’m venting just a little today.  Feel free to skip to a more positive post I’ll no doubt post later in the week.

Had a lovely walk in the sunshine today, along the canal bank with the kids running around whacking each other with massive fronds of Rosebay Willowherb.  Sis and her two kids were fabulous company and we chatted about everything and anything and put the world to rights a little.

It was a reasonable sized walk and by the half way point one of my hips was hurting a little which made me limp slightly.  My Ulcerative Colitis means I get arthritis pains as well as tummy pains unfortunately you see. By the time we were within half an hour of getting back to the car both my hips were killing me and when Sausage started badgering me to run around I realised I didn’t want to chase him because it hurt too much.

I love walking and I love the outdoors, fresh air is something I crave and open skies are my solace when all else fails.  I can’t believe this stupid condition is even affecting my ability to walk.  I had a flare up like this before I was diagnosed and I can remember my doctor basically implying that it was all in my head, when I insisted it was all in my hips and my joints.  Idiot.  At least now I know what’s causing this, but it doesn’t make it any easier to deal with.  I don’t drive, I walk everywhere, I have two active children, I just don’t want to have to deal with this.

I’m on a fairly high dose of steroids at the moment and have been on them for approximately half of this last year.  Every time I stop taking them I start bleeding horribly.  Recently I reduced my dose and started with the awful bleeding etc so couldn’t get off the steroids at all and had to go back to a high dose.  So I suppose I’m officially steroid dependent.   I’m also taking an immuno-suppressant drug which doesn’t seem to be working (despite the dose being upped already) so I need another colonsocopy and then most likely they’ll up the dose yet again.   So I have the double whammy of another tube up my arse episode to look forward to, even more meds and if I can’t get off these steroids my weight gain will continue (half a stone in the last two months) and I can look forward to a lovely MoonFace.  Pretty, on a moon – not on me.

I’ve even looked into surgery recently.  I’m on 140 tablets a week ranging from anti-inflammatories, enemas, immuno-suppressants, anti-depressants, calcium supplements, iron supplements (I’m anaemic due to blood loss and not being able to digest my food properly), steroids and I’m sick of living like this.  I feel constantly tired and my joints ache when I’m flaring.  I’m also scared shitless of what’s ahead.  I have the option of a higher dose of immuno- suppressants, and then a couple of other drugs to try – if the local NHS or whatever will fund the last one which is debatable.  I can’t stay on steroids and I can’t continue bleeding like I have been.  I feel very much like if having my colon out is at the end of the road, then I’d rather face it sooner than later, because the thought of all that hell in the meantime is quietly terrifying.

Call me a wimp and a pessimist, but I just feel like the next few years are going to be a constant round of visits to GP’s, consultants, the hospital, the loo and I don’t want this.  This is why I’ve been looking into surgery which basically means the old ‘crapping-in-a-bag’ scenario, putting it very bluntly. But if that meant I’d be well again, then why the hell not. The thing is, from what I’ve read, it’s major surgery and all hell can break loose with that too – so I guess I’ll just have to continue coping with my shitty colon.  So that makes me sad.  I’m not naturally an aggressive person, but it makes me want to punch pillows and smash plates – neither of which I will do because it’s all rather pointless (and expensive, I love my Denby plates).  There is no cowards way out of this.  Bugger.

Tons of people deal with terrible things on a day to day basis and I’m under no illusion as to how minor this is compared to some.  But it still drives me mad, especially when I literally can’t run after my 4 year old on a sunny Wednesday afternoon and play jumping on shadows because my fekking legs hurt due to some stupid misbehaving inflamed tummy.  Please note, if either of my kids or nephews had fallen in the canal, I’d happily (well, not that happily maybe)  have run and jumped in after them, hurty hips or no hurty hips. I’m not incapable, just uncomfortable.

So that’s why I’m rather quiet.  I’m taking stock of where I’m up to and evaluating what’s important at the moment.  I’ll be fine in a week I reckon, by that time I’ll have gathered together a bit more ‘oomph!’ and will be back on form. Promise.

Apart from anything else I’m just writing about this as part of my telling people about Ulcerative Colitis mission – not that anyone will have read past the first paragraph after my introduction, lol!    If you met me on the street you would never know anything was the matter with me you know, it’s a completely invisible disease.  And it’s not Irritable Bowel Syndrome and just a case of watching what I eat and farting too much, which is what so many people seem to think this disease is.  Irritable Bowel Disease, Ulcerative Colitis, is your own immune system attacking itself so badly that it causes ulcers and wounds on your insides that often refuse to heal causing cramps that can rival labour pains, terrible blood loss , loss of bowel control in some cases and countless trips to the loo (when I was admitted to hospital last time I was literally crapping mostly pure blood ten times a day) and had to have intravenous steroids to stop my bowel bursting in a worse case scenario.  It also causes inflammation in your joints such as arthritis.

I can’t just stop eating spicy food or fibre and everything will be fine because food isn’t the cause of this, although it can aggravate it – unfortunately I have no idea if anything I eat causes a flare because I’ve not spotted a pattern as yet. Stress can aggravate it too, although with a busy family life and a chaotic lifestyle there’s not much I can do to control that.  In many ways it’s just a case of my immune system just going bonkers, it’s not something I’m doing that is causing this, it’s in my genetics or something.  It’s a complete pain in the arse, but its my arse and my arse alone – so no-one else can deal with this apart from me, much as I wish I could run away from my own arse and leave someone else to cope with it. Not gonna happen.

‘An Arse! An Arse!  My kingdom for a New Arse!’  (made up Shakespeare quote, Richard III)  

Whistling in the Dark.

Whistling in the Dark

I struggled for ages to come up with a title for this blog post, nothing seemed quite appropriate apart from this one.  I’ll leave you to make the link, it does make perfect sense if you think about it for a while.  Life can be dark, but we can always whistle. 

Every now and then I write a blog post for the Babyhuddle blog, I’m an ‘Elite Blogger’ for them you see. That makes it sound like I fly jet fighter planes for them or something doesn’t it.  *giggles*

Anyway, I wrote a blog post about humour and about how important it is to teach our children to laugh, at jokes, at adversity and just in general – simply because humour can often be our solace and our strength when times are tough, the social glue that holds friendships together and it’s just downright fun.

Call me ‘up my own arse’ but I think it’s a cracker and I’d love you to read it.  I’m not particularly proud of most of the things I write, but this is one post I’m very happy with. Please do drop by and see what you think!

Here’s the link!  It’ll take you to the Babyhuddle site where it’s posted HERE.  It’s called ‘You Gotta Laugh!’

It seemed rather an appropriate topic in a completely back to front way.  This weekend my grandma who is 94 had three small heart attacks and landed herself in intensive care, where she had another heart attack.  The nursing staff and the consultant all thought that she was going to leave us at 3am on Saturday night and funeral arrangements were discussed – it really was that serious.

The whole family has been through hell and back, we’re still taking things hour by hour.  Every time the phone rings we all jump, it’s just horrific. This evening my auntie, uncle and I went to visit her.  She lay in bed, wired up to massive banks of computers with flashing lights and bells that went off every now and then – she still has her old smile and her laugh, but she’s lost and wandering in her head quite a lot.  We’re all hoping and praying to whatever we hold dearest, that she’ll come back to us – but we’re not overly optimistic.

I’m not saying we sit and laugh at the situation, because you just can’t, it’s too terrible to comprehend – but humour and general chit chat oiled the conversation a little, even in such an awful setting. I mentioned that it was a good job the kids hadn’t come along because they’d be pulling out wires and thinking all the computers wired up to her were some sort of huge computer game.  My auntie said that she’d spent hours and hours on the phone to all of Gran’s friends letting them know where she was and joked that she was taking on Gran’s role very well in her absence.  My sister had sent in a scratch card with Gran’s birthday card, as she’d had so little luck recently, she said that she deserved some and maybe a scratchcard would do the trick.  Unfortunately Gran didn’t win the lottery or a vast amount of cash whilst stuck in Intensive Care, but it was fun trying.

If you didn’t laugh, you’d just have to sit there and cry.  The occasional silences were deafening, or at least I thought they were. I’m not very good in situations like that and it is so hard to know what to say whilst faced with someone you love in so much pain and in such a terrible situation.  But what can you do apart from make small talk about the kids bouncing off the walls at home and joke about how Gran needs a dedicated nurse, just to keep all her birthday cards from falling off the walls next to her bed?  I don’t know.  I still don’t.  I suspect I babbled when I tried.  We all just wanted her to feel loved and that we were there for her, it was so lovely to see her smile when we managed to engage her in a conversation and especially to see her laugh (inbetween coughing fits).

Poor love, old age is very, very cruel.  If I could lend Gran my heart for a day or two I would – if I could swap legs with her so she could walk for a while – I would.  Her kidneys are suffering too at the moment, so if she could borrow my bladder, I’d happily hand it over for a bit.  I just wish I could help!  She is having the toughest time ever, and all any of us can do for her is sit, wait and hope.

The one thing that gives me a little hope is that she is still as stroppy as ever, I’ve heard my mum doing impressions of her which made me laugh:

*you have to read this with a voice like the queen*

‘Excuse me!  I need to have my eye drops at 8am, it is now 8.05am, will you be doing them soon?’

Yesterday when I rang the ward for an update the nurse said:

‘She’s awake, drinking tea and bossing the staff around so she’s not doing too badly.’  They asked my mum if Gran used to be a teacher (she wasn’t) because of her tone.

My mum and I both chuckled at this, we’re both accustomed to Gran’s ways and this is so typical of her.   This evening she was drowsy, confused at times and yet occasionally her old self.  All I can say is that I hope we hear more funny tales about her being strong willed and obstreperous – that way we’ll know she’s winning the battle.  Sadly I don’t think we will, but we’ll have to see.

A proper bit of writing apparently has to have a summary, I’m struggling here.   I guess Monty Python got it right when they sang ‘Always Look on The Bright Side of Life’ which as you’ll know if you read this blog, is one of my favourite songs.  Please forgive the recap, I know I only posted this the other day.

Some things in life are bad
They can really make you mad
Other things just make you swear and curse.
When you’re chewing on life’s gristle
Don’t grumble, give a whistle
And this’ll help things turn out for the best…

I doubt Gran would approve of this song, I’m not sure she’d whistle along either – but as her loving relatives, there’s nothing else we can do right now, apart from to sit here twiddling our thumbs and well…whistling.  It’s certainly all I can do, which is endlessly frustrating.

If anyone has a crystal ball they could lend us, we’d really appreciate it.  The next few hours/weeks are quietly scaring the hell out of all of us.  Please think of my lovely, funny, caring, warm, wonderful Gran as she lies in her hospital bed fighting for her life and wish her well.  Can’t do any harm can it. Thank you. x

The Black Dog

The Black Dog

Last night I woke up at about 3am with the words ‘Have to make a change now….’ running through my head.  You see I’ve been rather over-run with negativity and the Black Dog, as it is sometimes known, has been keeping me company a little too often recently. Depression does run in my family, and as I’m a sensitive soul on the sly, I’m  a little prone to this.  Even more so at the moment because of my stupid broken colon.

So, here’s as it stands.  My Colitis is driving me crazy.  I’m on 6 Asacol a day, plus 3 iron tablets (due to anaemia brought on by blood loss), 1 enema, 1 Azathioprine and two Citralopram.  I’ve said this before and I’ll say it again, I’m rattling with tablets.  In fact I am a human maraca.  If I jump up and down to music, you can hear them, honest!

In fact….*Kay jumps up and down enthusiastically* – ‘Name that tune!’

Yep, you got it!  It’s ‘Shake, Rattle & Roll!’    (I nicked that pun from my mate Jo, sorry Jo, it was too good not to use)

The steroids fought off the inflammation for a while, but it has all returned with a vengeance and so I’m on the stronger Aazathioprine now on top of the Asacol.  Although I’ve come across people who’ve been on these tablets for years and say they are great, I’m rather nervous about a drug that is labelled ‘Cytotoxic’ and that I’m warned not to handle too much.  It increases the risk of skin cancer significantly from what I can tell so I’ve bought some very strong sun cream.  Something I love is lying in the sun, my skin tans naturally and I barely use sun cream under normal circumstances, I think I will have to get on the case with streaky fake tan now. Bugger.

Forgive me for going on, this is therapeutic for me.  If you don’t want to read this, just skip to a review about plastic toys or something.  Ulcerative Colitis increases the risk of bowel cancer, Azathioprine increases the risk of skin cancer – I think I’m going to chain smoke from now on and attempt to get lung cancer too.  Then I could get a full set!  Bingo!  The irony is that people who smoke are far less likely to get Colitis, that is statistically proven.  You try your best and what happens?! *rolls eyes*

Azathioprine is a drug that works by supressing the immune system (Colitis is thought to be a disease where the immune system goes into overdrive, but they don’t really know) – so I’m going to have to have weekly blood tests to make sure my white blood cells don’t deplete too much.  I’m also going to have a flu jab because I’m going to have a crappy immune system and am quite likely to pick up bugs here there and everywhere.  Living with two children who double as germ factories is going to be fun, fun, fun.

I’m going to have to stop smoking because one thing I’m also prone to is chesty coughs.  If I have nil immunity I can imagine that’ll be the first thing I’ll fall foul of – so plastic fags it will have to be.

Basically I’m just quietly terrified.  Because the steroids temporarily fought off the inflammation, but it came back again afterwards…..as the doctor said…it implies that it is quite ‘aggressive’.  Some people get Colitis and it goes into remission after a flare up, mine hasn’t really slowed down much at all, despite the armoury of tablets.  I’m on the next level up when it comes to medication now, and it will take about 3 months to kick in apparently.  In the meantime I have to go to the loo between 2 and 3 times a day (which maybe doesn’t sound much) but each time to be frank – look away now if you have a weak stomach – like a traffic accident. I’m losing blood like a broken tap leaks water. It’s really, really scary and it makes me really tired.  Each trip to the loo takes ages and I have to sit there listening to the kids bickering or running amok in the living room downstairs and am unable to do anything apart from to yell ‘Stop throwing food!’ or other helpful suggestions at them.

I am quietly feeling a shiver of panic up and down my spine, I don’t want to end up crapping in a bag.  I know that’s a last resort, I know it’s very unlikely, I know I’m over reacting, but I can’t help those kind of thoughts.

That’s why I woke up last night knowing I had to make a change.  If I carry on like this,  that Black Dog is going to start following me around even more.  I mean, I love dogs, they’re cute and furry and I like to pat them.  But I don’t like this dog, it lurks around dark corners and growls at me when I’m at my lowest. It doesn’t wag a friendly tail, it bares its teeth and snaps at my clumsy feet as I trek off to the loo.  That’s why I need to chuck a stick a very, very long way away and to tell it to ‘Go fetch!’.

So in order to do this I need to remember, there are far worse things that could have happened.  I have a wonderful supportive husband and kids who I love more than life itself.  My parents love me even when I’m self-involved and blind to other people’s problems; my sister constantly goes out of her way to help out and we have enough to manage on.  We are not in debt, Horace has a job, the sun still shines, there’s always a new day, there are daffodils in the garden and every morning I hear the birds singing in the trees outside our attic window.  It’s not so bad.  In fact, life is pretty amazing really.

So, it’s time to make a change.  Less moaning and more positive thinking.  Who in their right mind wants to spend time with a misery guts like me right now?  No-one apart from very bl**dy annoying black dog.  So, that’s me resolving to try harder.  ‘Go Fetch!’ you horrible mutt!

Cheery posts to follow, honest.

‘Normal blogs will resume once Kay has finished having a wobbly do’

‘Thank you for your patience’