Friday, November 26, 2010

Verbal Diarrhoea

I’m 22 weeks pregnant. I’m within a normal BMI and I haven’t put on any weight during this pregnancy. I’m showing a little more these last few weeks, but generally I don’t appear overtly pregnant. If you met me for the first time today you would probably not realise I was pregnant, or you might think I’m in the first trimester. I guess I say this just to put my experience into some kind of context.

I’ve known a few women who’ve been pregnant, although to be honest, not that many. While several of my friends have children, only one was pregnant during our friendship, the others had children when I met them. Likewise a couple of women I’ve worked with have been pregnant; however I wasn’t particularly close to any of them. So honestly I didn’t put a lot of stock in the stories I heard about inappropriate comments, intrusive behaviour, and unwarranted touching. Surely they’re exaggerated. People aren’t that insensitive.

Boy was I wrong. It seems ‘baby brain’, a phenomenon where a pregnant person becomes forgetful or absent minded can also occur by proxy. Just merely being in the presence of somebody who’s pregnant can induce verbal diarrhoea. Here are a few gems I’ve experienced so far:

Are you fat or do you have an announcement to make?
I would like to ‘announce’ that you are a tactless idiot. It’s never ok to comment on a person’s appearance, never, ever. If that someone is a woman who appears to have gained weight or lost weight, it’s even more important to shut the fuck up. It’s none of your business. You’d have to live under a rock, on another planet, not to be aware of this.

I’m coming to your first ultrasound.
Um no, you’re not. This was said to me by a colleague at work who is little more than an acquaintance. I really had to be firm with her too. She’d rearranged her schedule and had her car keys in her hand. Talk about intrusive, not even my mother or my best friend would have requested an invite to that event.

I know you’re not telling people the sex, so just tell me while no-one’s around.
I hear this constantly, by friends, colleagues and strangers alike. Four people know: me, my partner, the ultrasound technician and my doctor. I don’t have an issue with people asking what the sex is, it’s when they continue to ask despite being told that we’re not saying the sex or when they go on to say things like “yeah my cousin didn’t tell anyone either. She’s such a bitch like that.” Um, did you just call me a bitch?

Do you think having a baby is really such a good idea?
I’m starting to think it wasn’t for your parents. Seriously, what am I supposed to do with this? If having a baby isn’t such a good idea, it’s too fucking late now. What would you have me do about it? Wait, don't answer that. I don't want to know.

I don’t mean to scare you but (insert horror story)…
This one really gets my back up. For fucks sake, STOP and think about what you’re saying. It’s a scary period. Shit goes wrong all the time. I’m aware. I don’t need you painting me a picture. I don’t need you planting seeds of worry in my head about rare and unlikely devastations. I have enough to worry about. Just smile, say congratulations and if you really feel the need to add something, talk about how cute your 2 year old nephew is when he tries to pat the family Axolotl.

You’re boobs are huge. Are they hard? (Proceed to feel me up)
No, they’re boobs. Why would they be hard? And why would you think it’s appropriate to grab me on the boob? This has happened to me more often than the unwanted belly touching. The belly thing I expected, but people wanting to grab me on the boob never entered my mind.

Oops. Don’t fret; my first child was a mistake too.
I’m not ‘fretting’ and please don’t refer to my unborn child as a mistake. The only mistake here is your foot in mouth disease.

How long were you trying for?
None of your business. Next question.

How often did you have to do the deed before you conceived?
I think I preferred your last question. Are you seriously asking me how often my partner and I have sex???

So due in April, then you must have conceived in…?
Seriously, stop thinking about my partner and I in bed.

Was your partner upset when you told him?
Yes, he was furious because he realised I’m a conniving whore trying to trap him into making a commitment by purposely getting pregnant. It’s probably not even his! This question really pisses me off. The assumption that my partner would be anything but thrilled and the implication that I purposely did this really makes my blood boil.

Don’t you think you should stop wearing jeans now that you’re pregnant?
This one just amuses me. Likewise I got told that I should rethink my choice of nail polish colour (Purple at the time) now that I’m pregnant. I really don’t understand what one has to do with the other. I highly doubt that the baby gives a shit what I'm wearing.

Will you be getting married before the baby comes?
No, it's not 1950 anymore.

I imagine that as I get further along in the pregnancy, the stupidity will increase in regularity. Something to look forward to!

Stay tuned.


Thursday, November 25, 2010

Ongoing treatment through Pregnancy

When I had my last Infliximab transfusion, I was told by the nurse, rather casually, that my next one in December would be my last until one month after the baby is born, making it sometime in May. Naturally, I panicked. I can’t go FIVE months without medication. Hell, history has clearly demonstrated I can’t even go five weeks without medication.

The nurse was not at all concerned. She brushed me off with a “You’ll be fine” and “it’s best not to take unnecessary chances when you’re pregnant.” I wondered how she catergorised the very real risks of my becoming so unwell that I can’t eat, become malnourished, have intestinal blockages and require hospitalisation and surgery on the growing baby. Would she tell a person with diabetes to stop taking insulin? Or someone with epilepsy to cease anti-convulsants?

I considered asking her this, but decided to go straight to the source: My specialist. After all he is the one who has the ability to override this seemingly arbitrary rule, not the nurse. As much as I respect the work that nurses do, they are essentially powerless against the organisational red tape.

I made the appointment but my baby brain kicked in and I completely forgot all about it until a week afterwards. Way to maintain credibility. I called, apologised and begged for another appointment. His receptionist was unimpressed but after an agonising few moments where it seamed she would not get me in until January she relented and said “Well I have had a cancellation for Wednesday.” I took it, along with her comments about ensuring that I do actually turn up this time with gracious appreciation and wrote down the appointment everywhere, diary, calendar, even a bright yellow post it stuck to the side of my computer.

On the drive over to my specialist I replayed arguments I anticipated I would have with him over in my head. After my last surgery in 2008 I was without medication for 6 weeks. During the surgery they removed all the active Crohn’s. 6 weeks later my guts were absolutely riddled with it again. I told them. They dismissed me. A colonoscopy preformed at the 6 week marked showed exactly what I had been telling them: Complete relapse, worse than it had been pre-surgery. It took two years and multiple admissions, procedures, minor surgeries, blockages and medication trials to get me to the point I am at now, which is relatively healthy and able to function. I planned to remind him of all this.

Don’t get me wrong, I’m not dismissing the risks this medication may pose to my unborn child. I’ve done the research. Infliximab is a category B1 drug, this is defined as:

“Drugs which have been taken by only a limited number of pregnant women and women of childbearing age, without an increase in the frequency of malformation or other direct or indirect harmful effects on the human fetus having been observed. Studies in animals have not shown evidence of an increased occurrence of fetal damage.”

Essentially all of the research that has been done has shown no adverse effects, however to move the drug into the Category A slot, more research needs to be done. Compare that with the risks to an unborn child where the mother is malnourished treated with prednisolone, etc. Not to mention the very real chance of death to both mother and baby in the event of an intestinal blockage. In my mind the risks associated with relapse are far worse than the risks of taking this medication.

I arrived at my appointment and sitting impatiently before my specialist as we exchanged pleasantries I found it impossible to contain myself. “Look, can we just cut to the chase?” Yes, I actually said that. He looked at me a little taken aback and slightly amused. “Is there a problem?” Um, yes. There’s a pretty big problem. I calmly explained. He considered me for a moment and then said “That won’t work. You can’t be without medication for that long”.

I was stunned. I’m so used to fighting and arguing with medical people around my treatment that in all the scenarios I played in my head on the drive over, it never even occurred to me that he might actually agree with me.

He said that the whole waiting one month after birth thing is nonsense. Once I give birth I can have the infusion as soon as I am able to physically get there. He said, if you give birth on Monday, you can have the transfusion on Tuesday if you like. He then said that he is prepared for me to have the transfusion anywhere up to 35 weeks pregnant. He then emailed the IBD nurse, the medi-hotel unit manager and the pharmacy as we spoke to inform them of the same. He is a man of action. I should never have doubted him.

So I will have my next regularly scheduled transfusion in December. Then I’ll have another in February, slightly earlier at 6 weeks, then the next will occur in April after I’ve had the baby, as worst it may be two weeks late.

Crisis averted. I feel unbelievably relieved.


Friday, October 8, 2010

Move Over Crohn's Monster

My Crohn's monster is going to have to learn to share. I'm not sure how it will feel about it given that it's had the run of my body all to itself for so long but it has no choice. For the next six months anyway, the Crohn's monster will have some company since I'm 14 weeks pregnant.

We had the ultrasound last week and everything is as it should be. "You're baby is structurally sound" were the words of the technician. All early screens have come back with positive news. There are no indicators of downs or any medication-induced difficulties. :-D

Needless to say I was not expecting to be pregnant. We had no plans beyond 'maybe one day in a time of remission' to start a family and to be honest, left up to us to make, it probably wouldn't have happened. However now that the universe has decided to make the decision for us, we are both thrilled. I am so excited and so impatient.

Beyond immediate family members and my best friend I haven't actually told very many people. I didn't want to tell people and then have to untell people if the news wasn't good. Now that the ultrasound has come back with good news I've been telling people the news all week.

I'm exhausted!

Anyway, how does the Crohn's impact on the baby? Good question, I'm glad you asked. I'm on Infliximab which is a category B1 drug. This means there is no evidence that it crosses the placenta but more evidence is needed particularly during the late stages of pregnancy. I'm told by my GI that I can have the infusions right up until two month before my due date which means I'll only be unmedicated for two weeks. Methotrexate is a giant No-no, but fortunately we stopped that in February. I also have to take a slew of vitamins because, the Crohn's has depleted me.

Otherwise, everything is pretty good. I was fortunate that the infliximab has actually done a pretty great job of getting the Crohn's monster to pull it's head in and behave. That, coupled with the fact that I cut back my hours at work and have given myself a chance to recover, my body is actually in pretty good baby growing condition :-)


Sunday, August 1, 2010

Gas (Not for the feint hearted)

On Friday I bought a supermarket BBQ Chicken and some rolls for dinner. I'd had a bad day, work is awful, my friend had a car accident (She was ok, just in shock). I was late getting back from the gym. At any rate by the time I eventually got home, I was in no mood to cook so I went with something easy and store bought.

I think I need someone to follow me around everywhere I go and whenever I'm about to do something stupid, they can slap me across the face and yell "Stop, Think about what you're doing!"

I even put copious amounts of cheese *SLAP* and warm chicken gravy on top *SLAP*. Then I put the whole lot in the microwave and nuked it to within an inch of it's life so it was all gooey and melty goodness. I may have washed it down with a Sprite. *double SLAP*

Not surprisingly, yesterday I woke up with a swollen belly and stomach pain. Ah, yes, stupidmarket BBQ chicken with it's endless additives, preservatives, marinated in grease and stuffed with fat, it truly is the dinner that keeps on giving.

I had to go out. I'm determined to get the weekly chores done before midday Saturday so I can have the rest of the weekend to myself. Anyway, while walking around the shops with a Skinny Vanilla Cappuccino *SLAP* in hand, I began to feel more and more uncomfortable.

My belly was quite swollen by this point. My jeans where noticeably tight. Then came THAT rumbling feeling. I wasn't even sure where the nearest public toilet was! *SLAP* Amazingly, it hadn't even occurred to me to look. Something I do almost as unconsciously as breathing normally.

After a moment of panic, I remembered my iPhone has an app called "Toilet Mate" which not only tells you where the nearest toilet is, but links into google maps to give you directions. I looked in my bag and suddenly had a flash of my iPhone sitting neatly in it's charger dock. On the bench, AT home *SLAP*.

I looked around me. The shopping strip consisted of bars, restaurants, clothing stores and a Plaza. It was 10am so bars and restaurants were of no help. Wait... Plaza? That's another name for mini mall right?

Beeline. I made one.

When I finally found the public toilet, there was one person in line ahead of me and soon after three more people (two women and a young child) queued up behind me. I waited impatiently in line (Disabled toilet was out of order and the mens - yes, mens, I'm not precious - was being cleaned) until my turn.

There were two toilets in the restroom, but one was clearly blocked. It was overflowing with water and soggy paper and the seat and floor were soaked. For a moment, whilst in line, I contemplated using it. *SLAP* I mean what are the chances of catching Cholera or Leprosy from a shopping centre? and seriously, how bad could it actually be? *really hard SLAP*

Fortunately, as I was building up the courage to venture into the bacterial orgy, the working toilet flushed and the women exited. I ran in, dropped trou and sat down.

For a moment there was nothing and then I broke wind. I'm not talking about a little note from the bum bagpipes or a subtle blow of the arse trumpet either. This was the full orchestra. I'm talking window rattling, leaves a ringing in your ears, Richter-scale registering, hold on to the toilet for fear of being blown off flatulence.

And it went on forever! At least 60 seconds. The bathroom acoustics didn't help matters either, that thing was echoing off the walls, floors and ceiling. It almost took on a life of it's own.

"Oh God!" I heard a woman mutter in horror, followed by the sound of the outer toilet door being hastily wrenched open and the clambering of footsteps as women and children fled for their lives.

When I was finished, I emerged out of the toilet stall to an empty room. I washed up, un-disheveled my clothes and hair and made my way back out to the shopping centre. Interestingly, my stomach was no longer swollen, sore or grumpy after that.

My Crohn's monster: clearing public domains since 2002. ;-p


Wednesday, May 19, 2010


Today is World IBD Day. A day dedicated towards raising much needed awareness of Crohn's disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease-IBD).

Support the cause by clicking here, which will take you to the Crohn's and Colitis Australia website.

To everyone out there who has IBD, or supports somebody who does, Happy IBD Day.

Keep on, keeping on.


Thursday, May 6, 2010

Still Waiting.

I still haven't had my infusions. 8 days late and no sign that it's going to happen any time soon. There are no words to describe how angry I feel right now.

After my surgery this exact situation (born out of pure incompetence) lead to me being without medication for 6 weeks. 6 weeks was all it took for me to become very very unwell.

I'm angry and I'm panicking. What if all the good work that's been done is again undone by this break? Last time 6 weeks after surgery I was again back at square one. It took another 12 months of unbelievable pain and illness before any one would listen to me. When I finally did end up back in hospital. There were threats of an ostomy bag. In the end I had multiple surgeries instead.

Fuck. Fuck. Fuck.

Wednesday, April 28, 2010

Why are we waiting...

So I arrived for my Infliximab at 9am this morning and as I was heading towards the elevator, my mobile rings. It's the co-ordinator (and I use that term loosely) of the transfusion floor telling me they've lost my prescription and so don't come in." Um... too late my friend, I'm already here.

I'm now sitting in the cafe where there's internet access, very patiently waiting for them to sort out getting hold of my prescription so I can get my Infliximab. He said it could take up to an hour. I scoffed, pffft, yeah right! You usually have me waiting at least that long when you have the stuff. He flinched at that and I suddenly felt bad. Sometimes I snap first and think later.

Anyway. It's been an hour. I'm still waiting. So much for having an early transfusion and having the rest of the day to myself. I have a feeling I'm going to be here all day.

Stay tuned!


Update ***

At about 11am I got a phone call from my specialist who apologetically informed me that the research nurse (I'm sure I've blogged about her before, she's the worlds most incompetent person, she constantly messed up my Humira prescriptions when I was on that and single handedly caused me to be SIX weeks without medication) up and left on Friday, giving 3 days notice, and leaving everything up in the air. They can't find my paper work, symptom diary, blood results and so medicare will not release the medication. He asked me where I was and upon discovering that I was just downstairs he came down to see me. He has to have seen me within 10 days of writing the prescription it seems. Freebie!

Long story short, I can't have the Infliximab today. We completed all the necessary paperwork again and he assures me it'll be fine to go in a couple of days. Unfortunately, my only availability is on a Wednesday and next week I have the dentist scheduled, there is no way I'm going to delay getting it for two weeks. I guess I'll just have to wait and see what happens.

It's so unbelievably bloody frustrating.

Saturday, April 10, 2010

Maze Grill

Having Crohn's Disease means that I have to be selective about what I eat. I can't just shove whatever I feel like into my mouth. Extended periods of illness also means that sometimes I can't eat. Most of the time I can only manage one meal a day and so I want to make that meal count. Over the last year or so I've become more interested in cooking, cooking shows and celebrity chefs.

I'm a big fan of Gordon Ramsey. I know we're not supposed to admit that. He's not at all like that lovable and all round good guy Jamie Oliver. He's crass, he cheats on his wife and by all reports is a real prick. I don't care. I like good food and regardless of what you may think about Gordon Ramsey's character, there is no denying, the man knows how to cook and he knows how to run a restaurant. Imagine my delight when I heard that he was finally opening a restaurant in my home town!

Last night we ventured out to Gordon Ramsey's new Melbourne restaurant Maze Grill. It was everything I hoped it would be. With it's open kitchen, friendly staff and soft lighting, it has a lovely atmosphere.

We were greeted by an impeccably groomed, friendly hostess who showed us to our table. We were immediately approached by our waitress who took our drink orders. Shortly after our drinks arrived another waiter came and explained the menu to us. Maze Grill is apparently inspired by New York grill restaurants, whatever that means. Essentially the menu consists of steaks and seafood from various locals. I chose a Tasmanian grass fed rib eye while my other half went with a New Zealand grain fed cut. We also got a numer of sides, french fries, onion rings and thick chips.

Bread was delivered to the table while we waited for our meals. I love that. Complimentary bread can make or break a dining experience for me. The bread consisted of rye bread and a warm chive roll with New Zealand salted butter. They are very big on telling you were everything is from at Maze Grill. My wine was from France, his beer from Hong Kong. The steak and sides arrived. The steak was fantastic. Tender. Cooked medium rare to perfection. Interestingly, the side relish that accompanied the steak tasted exactly like the sauce on a Quater Pounder at McDonalds (Sorry Gordon).

When we were finished, we passed on dessert (too stuffed), the waiter placed on the table several chocolate lollipops! Dark chocolate mint, milk chocolate and something the waiter called "popcorn" chocolate. Essentially, chocolate with that stuff in it that fizzes and pops on your tongue. It was the most wonderful unexpected surprise.

The bill arrived. They'd charged us twice for something but very promptly reconciled it when it was pointed out. We left a 15% tip and another impeccably dressed, friendly host came to show us out. Before he did, he asked us if we would like a tour of the kitchen which we both accepted. The kitchen was a hive of activity and in true Gordon Ramsey fashion, it was spotless.

I would definitely go again. :-)


Tuesday, March 16, 2010

Tinkle Town

This article was e-mailed to me the other day. It seems that somebody has finally done a review of the public toilets in our fair city (Melbourne). I should preface this by saying that one of the City of Melbourne's great claims to fame is that it has more public toilets than most other city's. It's currently averaging one toilet per 250 square meters.

But just how usable are they? I know I've been in some that made me feel the need to shower as soon as I got home. In fact I shudder just thinking about some of them. There are the underground toilets that I feel like I need a body guard with me and the supposedly self-cleaning Exeloo's that have sprung up everywhere, complete with mud and water covering the floors and piped elevator music. Not a pleasant experience.

Anyway, I felt I would be horribly remiss if I did not post it here. :-) You can read the original article here: I've cut it back for the purposes of this blog and just included the best and the worst toilet ratings.

Tinkle town
March 14, 2010

We've all been out on the town and needed to find a toilet, quickly. Trouble is, some public facilities are a more attractive place to spend a penny than others. To help you navigate your way around the city's cisterns, Peter Munro, Johanna Waldon, John Bailey and Susannah McGregor offer a critical guide:

Flinders Street Station


Open: 24 hours
Access: Male, female, disabled, baby change

Score: 2/10
Cleanliness 1/5; Toilet paper 0/1; Ambience 0/1; Soap/paper towels/hand dryer 0/1; Safety 0/1; Accessibility 1/1

Summary: This isn't one of those "Worst Toilet in Scotland" numbers unforgettably memorialised in Trainspotting, but it's definitely For Emergencies Only. It shouldn't be hard to see why the facilities at Melbourne's busiest transport hub will probably never be oases of sparkling white porcelain and liveried hand-towel attendants, but remember to put yourself on amber alert when making your way into a cubicle here. Some of the locks don't work or, more mysteriously, are painted over, and the wash-basins could do with some maintenance. At least there are nearby alternatives that won't require a tram ride to reach.

- John Bailey

Ground floor, Southern Cross Station
Open: Mon-Sat 4:30am-12:30am; Sun 7am-12am
Access: Male, female, disabled, baby change

Score: 9/10
Cleanliness 4/5; Ample toilet paper 1/1; Ambience 1/1; Soap/paper towels/hand dryer 1/1; Safety 1/1; Accessibility 1/1

Summary: Avoid the upper-level dunnies if you can (you probably won't be able to spot them anyway). Downstairs is where the action's at, and during peak periods you'll find plenty of fellow commuters increasing your wait time. Near-constant cleaning and solid fixtures that actually work make up for this, however. It's the kind of public toilet where you can buy deodorant in consideration of other train passengers and the baby change room even includes a kitschy wooden high-chair for feeding. These loos are perfectly pleasant as far as city facilities go.

- John Bailey

Southern Cross Station

Score: 9/10
Cleanliness 4/5; Toilet paper 1/1; Ambience 1/1; Soap/paper towel/hand dryer 1/1; Safety 1/1; Accessibility 1/1

Summary: Thirteen cubicles allow a line to move reasonably quickly at this busy block. They're spacious, open and clean (aside from strewn paper towel) though high traffic means the seats are a little worn. Large mirrors and a dispenser to buy mints, pain relievers and lip gloss offer a freshen-up before the train. All in all, a pleasant stop.

- Susannah McGregor

Exhibition Street (between Lonsdale and Little Lonsdale streets)
Open: 24 hours
Access: Men only

Score: 2/10
Cleanliness 1/5; Toilet paper 0/1; Ambience 1/1; Soap/paper towels/hand dryer 0/1; Safety 0/1; Accessibility 0/1

Summary: At the city's Paris end this green iron box is, appropriately, of the old-fashioned French street urinal variety. It's been there since 1925. That might have been the last time it was serviced, too. If you're running late for a nearby show, fellas, it's a safe enough scramble across two lanes of traffic to do your business and the occasional sound of passing horse carriages adds an earthy air to proceedings. The wastebasket enigmatically perched at eye-level atop the urinal itself does raise questions, though, and there's nowhere to wash or dry your hands, so this is probably not the spot to visit before a business lunch.

- John Bailey

Underground toilet corner of Collins and Swanston streets

Score: 9/10
Cleanliness 5/5; Toilet paper 1/1; Ambience 1/1; Soap/paper towel/hand dryer 0.5/1; Safety 1/1; Accessibility 0.5/1

Summary: Good lord, I've stumbled upon the Holy Grail of public toilets. With ample toilet paper in each of the six cubicles, shiny clean toilet bowls, light and bright ambience, the subtle scent of musky soap and beautiful clean basins, these are the Rolls Royce of public bathrooms. The only downside is the absence of disabled access and the use of soap cakes rather than a dispenser. Even the gold banisters leading down to the bathroom tell you this is going to be a good experience, and it is.

- Johanna Waldon

Collins Place

Score: 9/10
Cleanliness 4/5; Toilet paper 1/1; Ambience 1/1; Soap/paper towel/hand dryer 1/1; Safety 1/1; Accessibility 1/1

Summary: Wide mirror and good bench space: it's a well-designed girly lavatory. It's clean (serviced every two hours, according to the log) with a pleasant citrus smell and the decor is modern. With a food-court location, three cubicles may mean queues during lunch hour but it's worth the wait.

- Susannah McGregor

Elizabeth and Victoria streets, underground
Open: 7am-5pm. Closed public holidays
Access: Male and female. No disabled access

Score: 1/10
Cleanliness 1/5; Toilet paper 0/1; Ambience 0/1; Soap/paper towels/hand dryer 0/1; Safety 0.5/1; Accessibility 0/1

Summary: Good lord. A putrid stink slaps me as I walk down the twisting stairs. Inside, it's all dripping sink taps, rusted drain tops, cracked tiles, mould and moist, dark places. The mirror is dirty and there's no soap with which to wipe off the stain. What strange hell is this? Three cubicles are occupied and the fourth is without paper. Better you visit the large lavatories within the Queen Victoria Market, across the road. And never speak of this place again.

- Peter Munro


Wednesday, March 3, 2010

A notable day.

Today I had my regularly scheduled eight week transfusion (infusion?) of Infliximab. I arrived at St V's at 8.30am with quite possibly the worst coffee I've ever had (that wasn't made by me) in hand. It was weak as water and 3/4 froth. For a coffee house, it's pretty bad, although sadly, from this particular brand, it's just what I've come to expect.

But I digress. Today was one of those days that was full of all kinds of weird and wonderful moments. I wont bore you with the details of them all, just a few of the more notable.

After being admitted, I settled into the room. There was only one other guy there. He was about 60 and looked like he was having a bad day, hell he looked mean. Maybe he's having a bad life. He watched me as I arrived and pulled out my iPhone, laptop etc. I smiled and said hello. He just grunted. And then he stared.

And stared.

And stared.

I tried a few things. First I tried making polite conversation. Other than his initial grunt, he said nothing. I tried staring back, but seriously, this man must hold the world record for staring. He was a champion. He maintained a constant, unwavering stare the entire 6 hours I was there.

At one point when only he and I were in the room he spoke. It was the only time he spoke while I was there. He said "I have been to Brazil". I nodded encouragingly, expecting there to be a story that he was going to tell me about it. This is normal, I thought. Conversation. I was wrong. Periodically he farted or grunted, but other than that, there was nothing.

It was not pleasant.

Feeling very uneasy, but determined to ignore him, I turned my attention to other things. Twitter. Grey's Anatomy, politely chatting to a nurse, when quite out of nowhere, Staring Man snored. It was a loud, unmistakable, slightly drawn-out snore! The nurse and I looked at each other, my confusion clearly reflected on her face. Staring Man's eyes were wide open and he appeared to be... well... staring right at me. The nurse went over to him, peered at him from no more than 6 inches away.

"Hmph." She said. "He's asleep with his eyes open." and then, as she backed away from him: "That's creepy!". No shit, trying being in his line of sight. I tried to close the curtain, but it was almost immediately opened by a nurse who informed me that they must to be able to see me in case I have a reaction.

Which really brings me to the next notable thing that happened to me today. I had a reaction to the transfusion. I started feeling restless and agitated and a strong feeling of wanting to rip the needle from my arm and get the heck out of there came over me (and no, this had nothing to do with staring man).

It's hard to describe what I was feeling. My blood pressure shot up, which is impressive considering I normally have low blood pressure and my temperature spiked. I debated about telling them for a moment because Infliximab has basically saved my bacon and I don't want them to take me off it, but of course, common sense prevailed and I called the nurse.

That's when it occurred to me that this is how I feel after having Maxalon (anti-nausea medication which I am now allergic too). I mentioned this to the nurse who informed me that yes, they quite often give Maxalon in the pre-meds as a preemptive strike because many patients feel nauseous, and yes, it appears I was given it today.

I was tired, unnerved by Staring Man, irritated by the late start and now having an allergic reaction that made me feel like I wanted to crawl out of my own skin. I lost it. "Why would you give me an anti-nausea medication I'm allergic to when I'm not even nauseous???" I held up the bright red allergic alert on my wrist and shook it in front of her face. "See this thing? It's not a fashion statement. It's not there because it goes which my shoes! It's there so you know not to give me medication I'm allergic to! It has no purpose if you don't actually look at it." She mumbled something I couldn't hear and then told me to calm down. "I can understand why your upset but if you would just calm down"

"Listen lady" I said through clenched teeth ('listen lady/buddy' is my standard response when I'm desperately trying not to say, hey fucktard), "you gave me a medication I'm allergic to. I'm agitated and restless. It's what happens when I have this medication. I'm not freaking out. It's part of the bloody reaction." She told me to calm down again and I told her in no uncertain terms to go away.

Meanwhile, Staring Man kept up his ongoing vigil.

The nurse-in-charge came in. We had a similar exchange and she asked me if I wanted to lodge a complaint. I waved her away. I was in no frame of mind for that. Although I may lodge one in the next few days. I need to be clear in my head about what I'm actually complaining about.

Mind you, at no time did any of these nurses try to help me, other than taking my blood pressure and temperature. There were no words of reassurance, no soothing tones, no consulting with a doctor (that I was aware of at least) and no apology. There was certainly no "are you alright to drive home?" (which I did) or "will there be somebody with you at home, just in case?" (which there is).

Eventually the transfusion finished and a nurse came in and hurriedly took out the bunt and sent me on my way. She'll get cained later, since I'm supposed to stay for an hour after the transfusion or until everything returns to normal if there's been any kind of reaction. I think she was glad to see the back of the agitated crazy lady in 16b. I wasn't about to correct her mistake, I was jumping at the bit to get out of there.

I wonder if Staring Man missed me after I left?

I have deliberately saved the most notable thing for last. I went to see my specialist today. That's probably a blog in itself, but I'll save that for another day. The short story is that he decided to take me off the chemo drug. Harrah! No more Methotrexate. No more weekly injections at 9.30am on my day off. No more dry skin. No more hair falling out. No more monthly blood tests. No more nausea.

Joy of joy's. While he didn't actually use the big R word. He did impress upon me how much better my guts looked and my other test results were. Anyway, more on that another time. (Soon, I swear)

Staring Man aside, today was a good day.


Friday, February 12, 2010


When I first started working in my current job, about 5 years ago, absolutely everybody smoked. We'd all go out on our breaks together and a 5 minute smoke break easily became a 20 minute break.

Then oneday, quite out of the blue, a woman decided to quit. She'd had a major health scare, but chose not to tell anyone. She announced that she was quitting smoking. We all rolled our eyes.

One by one though, we all quit smoking for various reasons. I quit because of the Crohn's Disease and I was getting sick of being chained to this habit.

Now only one person in the office smokes and every time he goes downstairs for a cigarette, we all roll our eyes...


Sunday, February 7, 2010


I am one liter through the three liters of glycoprep bowel prep for tomorrows stricture dilation surgery. No matter how often I drink this stuff, it never gets any easier. And they've flavoured it with lemon now, yum! I'll never be able to look at lemons quite the same way again.

Every two months I'm going to have to do this. This is my third go at the dilation surgery. I have two strictures which need to be stretched out every three months, but instead of doing them at the same time (which would make sense, be less traumatic for me and mean less general anesthetic) they have elected not only to do them separately, but for them to be done by different surgeons. In practice it means I have to go in twice as often, which of course means I have to endure the bowel prep twice as often. It also means that I have to be the go-between for these two surgeons.

I know what you're thinking, how did she get so lucky?

Normally they tell me to arrive first thing in the morning and I sit around with my arse hanging out the back of a gown for most of the day before eventually being called in somewhere around mid afternoon. This time, I don't have to get there until 1pm. I'm hoping that means I won't have to wait around as long, that they've finally figured out that asking everyone to get there at 7am is a dumb policy and not that I'll still have to wait as long and will be leaving there at midnight.

Urrgh. Another couple of glasses down. I really hate the feeling of this stuff in my guts. My lower abdominal region just feels full and heavy... not to mention the burning ring of fire. How can I possibly still have 1.5 liters to go???

It's usually around this point in the process that I start to question whether this is the right course of action. Do I really want to keep going through this every 6 to 8 weeks? Maybe I should just take the resection and run. I remember there were all these good reasons why this was the better option, but damn if I know what they are in this moment.

I was asked on formspring recently what I would wish for if I had only one wish. Talk about a no-brainer, I'll take a cure's for $1000 thanks Alex.

Meanwhile, tomorrow the surgeon will also be taking a really good look around while he's in there, this will be the first evaluation of whether all the drugs are doing their thing or not. This time last year I was in hospital for 3 weeks in absolute agony and facing an almost certain ostomy. Now a year later, it's time to check in and see where things lie.

I'm quietly confident. I feel better within myself, so I'm certain the news will be good. In spite of the bad days and the regular feeling flu-like, generally I feel much better than I have in a very long time.

Good grief, there's still just under a liter to go. Maybe less typing more drinking is in order.



Sunday, January 17, 2010

International flight

About a week ago, my boyfriend had to make an unscheduled flight to England. 32 hours. The first pictures he sent me were of the toilet on the international flight and the meals on the plane. I think it's awesome that he thinks to take pictures of interesting restrooms and inedible food!!! The side effects of Crohns disease effects people other than just the one with the illness.

It's looks small, but almost cosy, which is good because for someone with Crohn's, I'd probably spend as much time in there as I would in my seat!

The top one is an Omelet with mushrooms and a hash brown, the bottom is apparently steak. Looks slightly better than hospital food, I wonder if they use the same caterers?