Monday, 21 January 2013

Shingle All The Way

Roll Up! Roll Up!
It's the first post of 2013- Actually it's the first post in a quite a fricken while! Honestly was torn between being consistent and having material so I've settled for consistently having good material instead of the usual doc appointment and tablet popped. So what has brought on this sudden post of zee blog?
I am currently hospitalized- My 3rd stay in under a year. A YEAR!
Fortunately, I've always been blessed with impeccable timing and have only chosen significant moments to become ill!
May Stay- Second Year Exams
September Stay- Start of Final College Year
January Stay- Start of Final College Semester

Whadaya know!? I AM Consistent!

Unlike the previous stays due to Crohns complications, this one is brought on by a side effect of the fun lovin' injection Humira, suppressing my immune system to that of an Ethopihan infant, and upon doing so, has granted little ole me with Shingles.
Only the sexiest rash skin has to offer! Not to mention the god awful pain. And itchiness. And the spore shedding causing everyone to stop dead within three feet of myself, covering every part of their body in apron, glove and mask.
Since being admitted yesterday, through a bit of scary Internet research, it turns out Crohns peeps are quite prone to picking up these little suckers! So I thought- put away the Harry Potters, don't play the martyr- Make everyone feel pity!!!
Realistically however, if you've ever had them, you'll be able to tick tack toe off the boxes as I go on & if you ever plan on getting them, should probably read chicken soup for the soul or something.

Wednesday: 'twas a windy morning, sun risin- TO THE POINT! Ear pain! 'Shit, ear pain, doc appointment'. Get it sorted before I'm wallowing in a corner wearing ear muffs. Corners are the worst place to wallow...
Thursday: Doc- Ear & Throat clear. Soft tissue infection?
Friday: (Night) Neck sore on left hand side. Swollen lymph nodes. If I was to fold my face in two: Right side, fairly slapable. Left Side, a breeze would hurt it. & THEN!!! I notice the lumps on my scalp. I'm not sure how I came by these- I don't usually end my Friday nights by indulging in a head massage but I suppose there must have been an ache.
Saturday: By the morning, the lumps are quite sore. All located on the left side of my skull.
Sunday: Death, come warm me up. Can barely move my neck- extremely painful. Lumps have gotten worse pain wise and have spread further around the left hand side. Make a house call to the GP '...Shingles?' & sends me to my humble abode, my beloved...Tallaght Hospital! Shoulda brought my sash....

After the barely noticeable three hour wait....I finally see the doc & they admit me. They're pretty adament it's shingles due to the unilateral nature of the rash & pain but of course never guarantee anything 100%. Of course I'd already diagnosed myself- its easy! Just type your symptoms into Google and just keep searching till it says cancer. Trust me, you won't have to look for too long.

Currently I am on:
4 antiviral drips a day
4 painkillers
2 acid tablets
2 calcium tablets
8 glorious tablets of Prednisone!!!
I knew my steroid demons would come back & funnily enough the side effects kick in straight away.
I feel my face starting to swell, my appetite is increasing & I'm starting to have difficulty sticking to one mood! I'm beginning to think I go preemtively crazy at the mention of steroids...just in case the actual effects take a while to kick in!
So they told me they're keeping me for a week...
A week doesn't seem like a long time perhaps but already I've finished my book, exhausted my Facebook chat as let's face it, nobody is online at 5:30 in the morning after the intercom speaker calling the care attendant to the nurses desk, is just outside your room. Judging by the amount of times this care attendant was searched for, one can only assume the worst...

Night 2 approaching.
Pissed I'm gonna miss Arabic!

Sunday, 17 June 2012

Post Steroid Rage

So I finished my course of steroids!
Woopty fucking do!
The dry hair and skin is back along with a few friends i.e. uncontrollable rage I feel for everything and everyone in conjunction with muscle aches and a general boredom with life!
I know you are but what am I!

Since coming off prednisone, I've experienced a variety of hormone related moods.(COMPLETELY the steroids....promise....)
I'm itchy.
I'm cranky.
I'm a good time!

Oh another depressing note, I no longer have an excuse to eat like an elephant. Although my appetite has diminished significantly, breaking the habit of eating at regular intervals has proved harder to tackle!
Damn Rolo yoghurts. Place in hell for muffin topped women around the world who over indulge on rolo yoghurts. There's currently five of them in my fridge. Yoghurts, not women.
There will be one by tomorrow.
Warm up my seat, Satan!

On a GREAT note however (Yes, there is one!), my ability to hold a conversation is back in action.
I can now concentrate enough to hold a conversation (to the level I had prior to steroids. I still lose track if i'm bored...They're not magical drugs mum! Surprisingly I don't find knitting patterns all that interesting!!!!!)
Today, I'm angry and full of rage for no specific reason. At the drop of a hat, I will cry.
I'm also unreasonable and if I get a single 'Wanna talk about it?' I will go for the jugular.
Currently on Humira. Not exactly sure if it's working all that well. Still get the odd ache in the stomach, weight went up obviously due to the steroids so going to track that, see if it drops at all.
I've written on a 'Woe Is Me' day.
We all have them.
If you think i'm being a moany bitch, you'd be right!
But i'm allowed to be!
Going to go cry into a Rolo Yoghurt and read Harry Potter now.

God, I'm such a catch.

Tuesday, 15 May 2012

Steroid Features

Prednisone, oh Prednisone.
Love/ Hate relationship.
I hate them, they love me.

Anyone who has had the joy of experiencing steroids will know only too well the side effects that accompany them. These are steroids for IBD now, not the type that have changed Jodie Marsh for the better.
I have previously been on steroids three times, all of which I can't remember too well as I was....13 the last time I think (8 years ago...I can feel the crows feet....)
but were my memory fails, A CAMERA'S DOES NOT! 
Unfortunately, my moonface photos have not been targeted, located and cremated.
They linger, like a bad virus, waiting to be shown to the boyfriends or the brother in laws, or the old family relatives who could have done without seeing me and my five chins grinning back at them like something for Alice in Wonderland!
Thanks mum. Thanks a lot.
These photos DO NOT NEED TO BE SEEN. How and ever, I am currently a walking hamster.
I exaggerate a little... the puffiness is nowhere near as tragic as it was at 13, but I'm a vain creature and dear lord, my cheeks and dimples were big enough already!
Fluid retention was not the 'look' I imagined rocking at the boyfriends approaching 21st birthday party, but i'll look on the bright side and see if he'll consider a fancy dress theme....

In other news....
Moonface is just one of the side effects. Another?
An appetite reminiscent of Gremlins after midnight. Blink and you'll miss the food.
I have breakfast, brunch, lunch, linner, dinner, supper & it was not unheard of whilst I was hospitalized to chow down on a Nature Valley at 4 in the morning.
Every food is heaven. Every food is EXACTLY what you were craving. I'd imagine it's what a baby craving would feel like, except instead of feeding a baby, I'm feeding my steroids and they're NEVER full.

''Prednisone and prednisolone are members of the glucocorticoid class of hormones.''
The reason I will be happiest to come off them. Hormones! The art of holding a conversation, of concentrating enough to listen to what is being said, with the telly on in the background or the kettle boiling, or when Dave inevitably drops something; When I am able to do these things again or to listen to these things without becoming the devil himself, I will be so happy! To be able to wrap the Garlic Bread in tin foil without cursing at the noise of it or react like Gollum to sunlight. Sensitivity overdrive is not a good time however I have contacted UCD about my college work, luckily they're being incredibly helpful and may just pull off getting my 2.1 degree next summer! HUZZAR!

Something i've noticed quite a bit regarding Crohn's and people who have it, is the use of the phrases 'battling Crohn's', the 'fighting Crohn's', the 'not letting Crohn's win'.
Forgive me, i'm not a child of the corn and do not hug tree's, but all this battling stuff?!
In my opinion, you cannot battle IBD. God knows it's tough having Crohn's but people, it's a part of you! You wouldn't see a perfectly healthy person update their Facebook with 'battling liver today' or 'can't let this hair growth win!'.
I don't enjoy Crohn's but I certainly don't battle it. That not good for either of you!
Say it with me: HARMONYYYYYYY

Having Crohn's has opened so many doors for me that I refuse to look at the things I may have missed out on. Having Crohn's has brought me to Alton Towers, has brought me skiing in Italy, has brought me to Lapland and has brought me one of my closest friends through doing all these things!
It's brought me to this blog and brought you all a couple of lols, at least i hope so....otherwise....shit just got awkward. TODAY, I' m positivity. In five minutes....god knows.
For now however, my Crohn's & I are off to get a cup of tea and watch some grey's anatomy from the comfort of our bed.
Almost time for Linner!
Steroid baby happy.

Sarah C

Tuesday, 8 May 2012

Float like a Butterfly, Sting like a Bee!

Exactly what it says on the tin. I haven't decided yet whether I'm actually going to be able to concentrate long enough to write this post! I've already made about five spelling mistakes and seeing as the longest word has been about three syllables, it's not looking good! 

So two weeks ago, I'm sitting at home, la de da, wondering- What will my next blog post be about? 
Well JAYSUS! There was no need to give me so much material. 
I usually operate my blog posts better/ slightly clearer/ more direction when I have specifics. The elemental diet for instance! One day at a time- easy! 
I'll start as I mean to go on! Bare with me- parts may be confusing. I get distracted by shiny things now. I'll explain in due time! 

Two weeks ago: 
Just came runner up in the Miss Louth Competition, eating breakfast, completely not wearing my sash.... develop a temperature. 
I had been up to my splendid IBD clinic the week before, shown them my lumpy legs, informed them of all the necessities that come with having Crohn's- pains/bowel movements/ energy levels. I looked great (sarcasm). 
They didn't seem overly concerned- 'We'll start you on the Humira again, watch out for the obvious signals when being on it'. I was a bold puppy. I had already taken an injection of Humira. I was crunched over further than Quasi himself a few days previous, I needed DRUGS! So I was already on the look out for 'signals' that perhaps the Humira wasn't being received well! 
Obvious signals that something is wrong, taken from the Humira website: 

Remember, tell your doctor right away if you have an infection or symptoms of an infection, including:

  • Fever, sweats, or chills
  • Muscle aches
  • Cough
  • Shortness of breath
  • Blood in phlegm
  • Weight loss
  • Warm, red, or painful skin or sores on your body
  • Diarrhea or stomach pain
  • Burning when you urinate
  • Urinating more often than normal
  • Feeling very tired
By Wednesday, I have every single symptom. Bit awkward.
I rang my doctors and got the 'Get to A&E' talk. Got to A&E, admitted that day and kept in for 10 days. 

The Crohn's Days: (1-3)

Doctors diagnosis: 
Sarah, you could have one of three things. 
It could be a Crohn's flare up.
It could be a virus that you've caught from being on the immunosuppressant Humira. 
It could be an allergic reaction to Humira.

Doctors Remedy: 
Sarah, until we find out what it is, we can't actually treat you. 
If we give you steroids, we could be worsening the infection.
If we give you antibiotics, that will worsen the virus.
If we give you Humira, you will get worse. 


By day three they'd decided that TO HELL WITH ALL THAT, we'll give her everything! 
Saline drips, Potassium drips, Ciproflaxin, Flagyl, Prednisone, Humira. 
The Crohn's eventually give up, took into account that it will be drugged for the foreseeable future and decided to die with pride! Hurray! We'll move you to a ward, for the night, monitor you, send you home with steroids for a month (sigh) and get you controlled on the Humira again. 
Not so much. 

The Heart Days: (3-10)

Brought up to a ward, after being in A&E isolation- room without a window, being approached by doctors in aprons and gloves whose natural scent I can only assume is Detol by now. The ward was a delightful change! Private room, telly, a view! I could easily handle a night here! 
Needle goes in, blood pressure is read and then they take my pulse. 
42 beats per minute. Bradycardia. FABULOUS. 
2 injections of Atropine to speed up the ticker, a gloriously unpleasant experience. 8 ECG's. 1 Holster monitor for 3 days. 
ZERO ECHO'S and a highly pissed off cardio team. 
Cardio team to Echo team: SHE NEEDS AN ECHO.
Echo team: ... Not so much. 
Being in isolation may get you a gammon steak with copious amounts of jelly and ice-cream, but it also gets you put to the bottom of the list for any in hospital procedures to 'CONTAIN THE VIRUS THAT IS ME'. 
They eventually agreed to send me home when they said I was no longer infectious (Always good to know!)! I think it was the sobbing in front of the doctors that did it. Although she seemed pretty unrelenting when saying she'd love to send me home, but as there is no one to resuscitate me should anything go wrong, she'd feel more comfortable having me in the hospital. Bed side manner- 100%. 

Highlight of my stay: 

When the cardio team compared me to Muhammad Ali. Resting heart rate of 32 bpm. Tank. 

Currently experiencing a whole host of Prednisone side effects, one of the main ones, an inability to concentrate
So i'm off to get second breakfast! 
Mmmmm. New meal times. 

Wednesday, 18 April 2012

Excuse Me Lumpy

I'll apologize now. This blog post is not going to be witty OR well structured.
Let the rant ensue....

I'm so pissed off with the level of care, or rather the lack of it that I'm actually receiving!
Call me selfish! I feel I have the fucking need to be selfish!
I've called up the fucking hospital every day for the past three weeks telling them I need a fucking prescription for my fucking medication.
I get on to the lovely Alice today for the fifth time to explain for the 100TH TIME that I need a Hi-Tec Cert and a letter for FUCKING COLLEGE to explain why i've missed A MONTH of it!!!!!
'Right well Sarah, I've just talked to the doctor about that & we need to see you before we give you the prescription'.
I was only up last week.
'Alice, I was only up last week'.
'Yes, but it just says in your chart that we're going to need to see you before giving you medication'.
'Right. Well, I'll come up today then'.
'The clinic is a bit full up today Sarah, so it'll probably have to be next week'.
'Alice, I've been sitting at home for a month now, getting progressively worse. & I'm to wait another week?'
'Actually, there isn't any clinic on next week, it'll be the week after'.
This is the point were talking became nearly impossible on the phone.
'I'll be up to the hospital TODAY. And i'll need that letter you's said you'd send out for college. See you at 2'.
At which point, I was put onto an IBD Nurse. A thoroughly unpleasant egotistical woman I've had the pleasure of working with on numerous occasions.
Think she owns the fucking place.
'Hi Sarah. So why were you taken off medication?!'
'I wanted to control it with diet.'
'Oh right. So YOU wanted to come off medication?'
'And now YOU'RE not doing too well BECAUSE of that?'
'Right....well the clinic is pretty full today'.
'I need to see a doctor'.
'A&E perhaps?'
'...Excuse me?'
'Do you want to come up to the clinic today Sarah, is that it?'
(Can't imagine were she got that idea....)
'Okay well you'll be a walk in so you'll have to wait'.
'SEE YOU AT 2' *Hangs up phone*.

How fucking dare she.
She gets all up on her fucking high horse, insinuating it's my fault for being sick in the first place.
The actual state of my health these days and the doctor wanted me to wait TWO WEEKS TO BE CALLED IN TO THE CLINIC!
Not to mention these fucking inflammatory lumps on my leg. They're sore, they're unpleasant looking and they have a long ass name I can't even imagine pronouncing. I have no good things to say about my care at the moment. It might look all well & good while you're healthy, but the moment you're sick, they're nowhere to be found.

Fun & games.
Sarah C

Thursday, 12 April 2012

Shake Me. I Rattle.

That should be the name of my book!  PATTEN PENDING. STEAL AND I'LL HUNT YOU DOWN. Knacker!
'...You need to have a sit down with your EGO!' Blaring 'The Saturdays' through the house.
I'm so gangster....
I had about three hours of sleep last night. I've gone from no medication to....
-Iron Tablets
-Calcium Tablets
-Acid Reflux Medication
-Microlite (Not Crohn's but sure, we'll throw it in there!)
-Solpadine (Granted, a regular!)
-Steroid Cream

I've lost my train of thought.
So, I was thinking about me aul blog, and thought about how much I missed spreading the joy!
Decided to update/change the style/direction of the entire yoke!
Now- before I launch into my recent hospital appointment (stick around, it gets graphic! In a sexy way!, I'm lying... not in a sexy way...whats wrong with you....), I want to state FOR THE RECORD that I fully support the whole no medication, elemental diet! It didn't work for me, how and ever, it works for a lot of people! I don't know how factual this is, but as it was spoken by my doctor, I like to think she might have picked up a few tricks of the trade in college ''The elemental diet usually works for those who have crohn's in the small bowel-'. So if that is you, then Jesus try it. Okay so that's were I stand with that, moving on.

To continue that statement, my doctor went on to say: ' The elemental diet usually works for those who have crohn's in the small bowel....but you have it there TOO, so maybe it will work'.
I wish I had honed in on this passing remark. Too. Hmmmm. It just recently came back to me & luckily I had scheduled a walk in appointment (No you can't schedule a walk in appointment...I may lie about appointments to receptionists. For FUCK SAKE I'm ill!!!!!) , so with my hospital appointment scheduled
 (I use that term loosely), I brought it up with the most recent cast outs of medical school, a lovely chap though. I've never met the actual head of the department. Lie- I met one man before who used to run it. He made fun of my college course. I willed him to lose the rest of his hair.
ANYWAY- I asked yon doc, 'Where do I have my Crohn's?'
I know I'm an idiot. I knew I had it in my bowels. Somewhere! But I was 10 when I was diagnosed and never got around to asking.
Yon Doc, after riffling through his papers: 'You have a small part in your lower small bowel...- (sigh of relief), you have it right throughout your large bowel, in your stomach, external Crohn's disease And you have an inflamed oesophagus- but we don't think that's Crohn's *smiles*'.
He could add incontinence to the list after hearing that rant.
A rookie mistake on my part then. I should have known the extent of my Crohn's before undertaking something so drastic. Well lesson learnt, BELIEVE ME.

No, my fellow Irish, not to mention my UK & US readers (I've got 'em! :D Seriously! I checked my stats!), I've not been well.
I can't eat anything without it running through me, I've joint pain, mouth ulcers, not to mention my nails completely suck now. So with all this going on... I decided to enter the Miss Louth competition.
Seriously, I mean I'm feeling so great about myself, WHY WOULDN'T I DO SOMETHING LIKE THIS. Sleep deprivation and reruns of 'Keeping Up with the Kardashians' will do crazy things to a girl.
Khloe Kardashian. My Hero.
So I've taken one injection of Humira so far. I've also missed a lot of college. The stress of that is horrendous. I've been putting off dealing with that by watching episodes of 'Made in Chelsea'.
I was given a choice however. Steroids or Humira.
Ugh. Steroids.
I wouldn't say I'm the vainest person I know, it's just that whole moon face look was completely 2005.
I've done it twice and after looking back at photos of my bright balloon mug looking back at me, I wanted to seep into a vat of depression. Dramatic, but sure, I'm tired.
My bones are so incredibly skinny already that I'm scared of being shredded down even further.
Currently a UK size 6. I have a Miss Louth dress fitting later.
What shade goes well with bone...?

Sarah C

Friday, 30 March 2012

A Month Without Food

Okay so major update needed.
A month without food.
The other day, I tasted chicken for the first time. It didn't excite the taste buds, but I honestly felt like a blind man, with the slightly heightened sense of hearing. I could taste EVERYTHING. The chicken taste, the fat, the salt. And I chewed it down, feeling...happy with myself!
The next day. My stomach wasn't so happy.
In fact. It was outraged.
Safe to say I stayed in the house that day. And my symptoms died down. I thought maybe I've just gotten a stomach bug/allow myself to adjust to these foods- how am I meant to go from no foods to a whole batch of Lofflex safe foods without some protesting from the tummy!?!
So I waited the day out with my ensures, thinking it was just a bug/adjustment. From a bite of chicken...
After the symptoms died away, I tried chicken again. The first food of the Elimination Diet/ The essential food of the Elemental diet & my ensures.
The next day, I caught up on old episodes of desperate housewives, with many pauses and flights of fancy to the bathroom.
So I waited out the chicken symptoms. Stuck (just spelt it 'Stook'....honestly....), to my Ensures and waited till I could face another bite of food. People who have tasted food and then had the agony of GOING BACK to the ensure drinks- It is the toughest thing I've had to do. So Ensure it was, until I was fine and then I tasted Rice Cakes. And then that was okay I think until I tried Grapes. And ever since the grapes, not even my ensures can save me.
My Crohn's settles down during the day with a more low residue diet, rice, rice crispies, pasta, WHITE BREAD :D, but certainly not enough that I can go on untreated.
Currently I feel...a bit like I've failed (even though I know I'm class, and I haven't).
I know in myself I can not/ will not go back onto just Ensures now. It is impossible now I've tasted my food again. The happiness, the energy, the joy of feeling warm!
I've had such a roller coaster of a month, and as I sit here, after a breakfast of tea and toast and rice crispies I can honestly say, I feel happy.
Bitter sweet ringing the hospital and hearing the words 'It's likely we'll have to reintroduce medication soon'.
I still FULLY SUPPORT this method of treatment. GIVE IT A GO. If it doesn't it work, it doesn't work. That sucks and it'll probably hit me later on if the doctors suggest steroids in which case I shall have to bitch slap them with force. But try it. Medication free. Independent of the hospital and doctors. DO IT. Because then you can say:
'A month without food.
I gave it a go.
I am Beyonce a superstar.'

Thanks for reading :)