Rhumy update

Was meant to go to work yesterday before going to see the rhumy, but some delightful driver decided to run me off the road then continue as if nothing had happened (hope he got fired or had a very shit day). Another driver stopped and made sure me and the car were okay, but yeah. Scary crap. Took the first left, pulled over and bawled and howled like a baby. Parents came and rescued me, so I had the day at home.

Also went and saw the rhumy. Sending me for x-rays and blood tests and such and is seeing me again in two weeks. I actually didn't mind this doctor. Heck, I'll say it 'cause I don't say it often, I liked him. As far as doctors go, he's nice, and he seems to know a fair bit about the Crohn's too, not just arthritis. Anyway, he did all the flexibility things (apparently I'm rather flexible), and I amused him when he said to lift my arms as high as I could and I got them level with my shoulders before the fat started hurting (there's a fair bit more there at the moment than I'm used to, and it does kinda hurt occasionally), and when he asked why I said ow I told him the fat hurt. He wasn't quite sure how to respond to that one. :)

Anyway. Basically, I've got some inflamitory sort of arthritis as opposed to degenerative (so in my eyes it's the better of the two). He's mentioned Humira as well, so it looks like I'm heading down the self-injecting track. Just hoping I can get the pens instead of the needles. Really can't stand needles. Speaking of, had two cortisone injections (one in each shoulder) which should hopefully help settle things down and help the pred settle the inflamation. So my shoulders are rather stiff and sore, but my hands are working a teeny bit better today.

Anyhoo. Just thought that stuff was worth posting up here. Nothing much else happening, apart from that cold thing still lingering. Snuffy and stuffy and blergh today. Hopefully Red Bull and telfast can fix that for later on. :)

I'm a little teapot....

Not really, but I am going slowly but surely insane.

Just a note, odd bit of pee and poop discussion to follow. Good, bad, and ugly. :P

Am off work today. Came home early yesterday and Friday. Spent most of the weekend unable to do anything. Hips, knees, ankles, wrists, hands and fingers all in agony. To the point where it hurt to hold a book, and I was dropping things. Bah humbug. Today, not in quite as much agony, but fingers, wrists and hands still sore, and the cold that's been working it's way into my system decided to gate crash today. Trouble hearing, glands puffy, head on vacation..... Blergh.

Meanwhile, I'm being a whingy whiney brat. Because I damn well can. Yes, I'm feeling sorry for myself, because no 21 year old should have to deal with all this shite. And yes mum, I'm well aware that there are other people out there who are worse off than me. But also as I said to my mum, I don't give a rats about those people right now. Right now, I just want to indulge in a little bit of self pity, a little bit of woe is me, a little bit of "I feel like crap both physically and mentally and pardon me while I fall apart, can you pass me the superglue in a while?". One day, when I am feeling better, I'm sure I'll care about the rest of the world again.

Going to see the doc again this afternoon. Grumpy pants are on. He sent me to get blood tests done a few days ago, so I went on my way home from work on Friday. As you do, you pee before you leave, thinking you're only getting a jab in the arm. This is now the second time he's ordered me to pee in a jar and I've had to make yet another trip back in there while feeling like crap because he hasn't told me to hold it for the test. Blood test does not equal urine test. Urine test equals urine test. Blood test equals blood tests. I don't mind doing it, I would just appreciate knowing that I'm meant to be doing it so that I can hold it and thus pee on cue.

Apart from the whinging about his lack of telling me things I should know..... Will be talking to him about the pred while I'm there. I'm over it in a very big way. Yes, I do agree, it has most definitely helped quite dramatically. What used to result in me running and crapping liquid fire for half an hour, most often with blood and slime mixed in for artistic reasons (best reason I can think of, because there's nothing else logical.... Who would want a logical body?), now may just go "You need to find a loo yesterday" and then take some form of soft but solid, and rather rapid, escape from my butt.

So yeah, it's helped/helping, but at what cost? I've gained enough weight that my feet now live on my desk when I'm doing my shoes up. I can't bend far enough over to do them up without having great trouble breathing (as in can't breathe, end of story). Also, trouble wiping own butt because of weight. Managing, but difficult. Getting extremely puffed by things which shouldn't make me puffed (standing up for example). It doesn't help when kids turn around in their chairs and stare at you for a good thirty seconds then keep turning around to stare at you. Doesn't help when their parents don't bother to tell them that's rude either. The facial hair is bothering me a lot. It's to the point where I'm rather self conscious with it and I can't help but wonder if others can notice it too. There's the insomnia and complete and utter exhaustion too. I hate it. I'm dead to the world all day then when I go to bed, BAM! Wide awake. Over it. I'm fed up with the mood swings. Sure, others don't like it, but how the hell do they think I feel? I'm the one who can't control her emotions, and I'm also the one putting up with people screaming at me about it. Doesn't quite seem fair to deal with the problem, more problems to try and fix the problem, and people's (often bad) reactions to those problems. So yeah. Going to try and talk him into backing me off the pred. It's not nice, it's not pretty, and I've quite honestly had enough.

Hoping he'll send me to someone who can help with the joints. Wasn't able to drive on the weekend, and he won't give me painkillers that work (ie, tells me to take Panadiene [which isn't working] and gets cranky at me if I take Nurofen or Advil [only things that have any slight affect] because they're bad for Crohn's). Need something done. Can't drive, can't cook, can't knit... Hurts to brush my hair and teeth of a morning sometimes.

Tired of feeling like I'm letting people at work down too. I wasn't employed to sit at home in agony, I was employed to work, and I can't. Maybe I should just quit and let them hire someone who can do the job. Would be better for all involved I think.

Fishies!!!

Tired as all shite. Have a headache. Feel rather coldy. Actually, feel kinda like crap in general. Just want to dope myself up on pain killers then curl up and go to sleep in a warm, comfy bed.

Yesterday, went to get blood tests done. Find out that a/ I need to get a urine test done as well and b/ stupid doctor forgot to write "weekly" on the form, so had to chase that today. A new one will be mailed to me. Seriously though, considering the hole in the toilet seat that women get to pee through while sitting, how the hell do they expect us to aim it into that tiny little jar???? Somehow managed without peeing all over my hands, but still. Thanks ever so much for warning me doc.

Had Subway for lunch. Some of the guys were going there so asked them to grab me a meatball sub. I figure stuff it. My gut doesn't like me much the past few days anyway, so why should it matter what I eat? It's gonna be upset with me either way. While they were buying me food (really guys, thanks if you read this), I went shopping.


Despite there being no kitten in the bottom drawer of my desk, there are now three goldfish in a goldfish bowl sitting next to my computer. A black moore, a red cap faintail and a calico fantail. Leaning towards Othello as a name for the black moore, but the others are still unnamed. May think of something other than Othello too... The CEO's offering to make sushi with them. :S

Head hurts. *sadface here*

Also, Imuran increase this morning from 50mg to 100mg (1 tab to 2).

Hips and shoulders were hurting lots yesterday. Hips still a bit sore today. Hate having the shakes. Legs were shaking with it this morning. Hate it.

Eyes still blurred/blurring. Trouble focusing/pain occurring while focusing. Also have raccoon eyes from being tired. Not a good look.

Bah humbug I say!

So yesterday. Ate crap. Ended up feeling like crap. Mild to moderate Crohn's pain, pooped a bit (no diarrhoea, but still running for the ladies), and then weird pain. Somewhere between the Crohn's pain and nausea, and I couldn't place it. Very weird.

Today.... I have a cold. Cough kicked in last night, although has behaved today. Sore-ish throat. Achey. In other news, am tired as all get out, and have a rather rotten dose of the shakes. Also, blood in poop. Not as bad as before, but just enough for me to notice it. The amount alone really wouldn't bother me, and it was only the once, but considering the Crohn's pain is at least a moderate today if not slightly worse makes me think that things aren't quite as controlled as I thought they were.

Shakes make things difficult. Hitting the right keys on the keyboard for example. Serving up vegetable. Peeling and cutting potatoes (was actually rather worried about doing so last night because I couldn't stop my hands shaking and with a knife in hand it's a bother). Also a bit upsetting to watch the hands shake and not be able to stop them.

Need to go and get blood tests done this afternoon. First of my weekly blood tests to keep an eye on the Imuran, and also the sugars one to tell me if I've got diabetes or not. Joy of joys. Not bothered by the thought of getting the tests done as such, just really tired and want to go home but instead have to drive to get them done after work then drive home. Blergh.

V. Tired.

Tired, cold induced blather.

Urgh. I am coldy/fluey at the moment. Achey, sniffly, head feels like a bunch of wet soggy newspaper glued to the inside of my skull.... The first person who says it's swine flu will be shot. Seriously, that's all I'm reading in the news at the moment. "Blah, blah, blah, swine flu, blah blah, swine flu, blah oh look swine flu". It'll go away. Just like the bird flu did. Besides, what I have is more likely a cold than the flu. *defensiveness over and out*

Joint pain still bugging me, particularly in my fingers, wrists and knees. Also, the pain I get in my jaw is starting to worry me a bit. It happens after eating a normal size meal (small bits and pieces are okay), or when I have something warm then something cold (ie, hot food followed by a mouthful of drink). Rather painful and tight and very uncomfortable and I'm not entirely sure that I'm meant to be experiencing it.

My parents must be magic. No, really. We had pizza last night for dinner, just after I had been musing over how it would go (okay, so it was a day or two later, but hey. Magic sounds better). Eagle Boys pizza gets a big thumbs up!!! I can eat pizza! Whoo!! Just not pub pizza at the local. *sad face goes here* But I can eat pizza!

Sleep is being interupted. I don't quite know which is more annoying, the waking up and staying awake for hours on end, or the waking up every hour or two throughout the night like I have been lately. Possibly that, because at least if I'm awake for a few hours I get deep sleep either side of it and I can do stuff during the time I'm awake. Waking up regularly is sucky because there's no deep sleep and nothing gets done.

My eyes are bothering me. Still just the general blurry/hard to focus crap. It's not made much better by eight hours in front of a computer every day. My computer at home doesn't get turned on during the week anymore. Poor thing. I just don't have a need for it at the moment. By the end of the day my eyes hate me.

Coherency is also still out the window somewhat. Typing gets redone, backspaced, deleted. Talking comes out half gibberish half the time. Sometimes I just shouldn't talk. Sometimes I can't. That's fun. And others I can't think of simple words, like desk and chair and window. They get replaced with "thing" and pointed to.

Off to get blood tests again this afternoon. I get to see the meany person next Tuesday after work and he wants blood tests done. Hate needles. Hate doctors. Hate afternoon traffic. Grrr....

On the upside, I have less than a week before I tell the doctor that either he takes me off the enemas or I take myself off them. I've had enough of them, I really have. They're time consuming, always uncomfortable, often painful, sometimes to the point of wiping out all messages my brain is trying to send to my body, and quite honestly, I'm fed up of having things shoved the wrong way up my butt. Not. Happy. Jan.

I'm to the point now where I tend to end up laughing a bit, because otherwise I'll cry. And I don't even try to stop my brain coming out with silly things. Like this morning, when my first thought upon entering the bathroom was, "Let's see what the Pimple Fairy left for us today". I tend to be a bit more sensible than that, but no. Sensible? Out the window! Clearly, my brain recognises that I need amusement above anything else, particularly at that hour of the morning.

Poo is back to it's usual self (by usual, I mean that which it has been more often than not in the past couple of weeks). No slime (thank the Gods!), no blood. Maybe it was just a one off, catch up/retaliation for the MacDonalds? Hoping so. And yes readers, I will proceed to talk occasionally about poo, farts and all things gross involving the gut and the butt. Have fun reading!

No kitten. I'm sure I'll eventually get tired of looking. In a year or two. :P

I think I can safely say that pooh occurs.

So. This is me attempting (probably in vain) to bring some normality back into my life.

Two weeks ago on the 20th March 2009 I finished work and wandered off to see the gastroenterologist (major achievement for me because that word is huuuuge). I'd been suffering abdominal and back pain, as well as diarrhoea since mid July 2008, and when the blood started appearing I'd finally had enough, so the GP sent me to see this bloke.

Wasn't so fun. Had to go through the personal and family medical history, strip so he could poke at my stomach, and then be told I needed to go and get needles jabbed in me to collect blood, and collect a pile of poop, and take a day off work on Monday (still on three month probation cause it's a new one) to go into hospital, be knocked unconscious and have things shoved up my butt and down my throat.

Oh yeah, and I had to stick to a diet over the weekend which involved very limited foods on the Saturday (plus approved clear fluids), then on Sunday only the delightful approved clear fluids, and then I got the joy of having to consume three doses of stuff that made me poop tap water for the whole smegging night (seriously, tap water's not quite right. Tap water has a thicker consistency than what came out my butt that night).

Weekend saw me become grumpier and grumpier and more and more miserable. Hate needles, so the blood tests weren't so fun (and plus I had to wake up early for them). Then came the gathering of the poop. While I knew my poop wasn't perfect (face it, who's is?), it was still rather upsetting to actually see it. Slime, vaguely tinted brown, with a dollop of blood for good measure(hey, the description of this blog does say the good, the bad and the ugly). Spent two or three hours straight on the loo on Sunday night, pooping tap water and reading, not even clear fluids from midnight.

Monday morning rocked around and off to the hospital to have my dignity removed. Sat around for a while waiting in nothing but a hospital gown. Tired, hungry, sore, coming down with a cold was all making me grumpy enough. I think I started snapping at people about this point. Needle shoved in vein eventually to get some fluids back into me, but first, here, have this, you'll be light headed. Remember nothing until waking up and noting my fingernails were a delightful shade of dark blue. Took a few hours to get back to normal. That night for dinner, the best roast chook, mashed spud, carrot and beans that I can ever remember having.

Last Friday, 27 March was Show Holiday were I am, so got the day off work and got paid for it. Went to see the gastro person for a follow up appointment.

Guess what? You've got Crohn's.

So. My treatment (at present) involves:
- 1 x 25mg tablet of prednisone in the morning
- 3 x 5mg tablets of prednisone in the morning
- 2 Salofalk tablets (currently both morning and night, so 4 all up, soon to go up to a total of 6)
- An oh so delightful and dignifying prednisone enema every night.

Gastro person is away, from last Friday, for three weeks conference leave. Not so happy about this. See, went to get scripts filled on the Friday, no probs bar for the enemas which weren't in. Got home on Monday and my mother had gone and got them for me. I was expecting something smaller. And I was meant to go out for dinner with friends that night too, but had the lovely task of trying to get my head around how the feck that much stuff was going to go the wrong way up my butt and stay there. Worked myself into enough of a state quick enough that I just didn't bother with dinner.

Tablets don't seem to be a prob for now*, however the enemas are still not so good. See, they're 100ml (20ml of prednisone in that), and you're meant to somehow get all of that into your butt, lay on your stomach for 5 minutes, then go to sleep in any comfortable position. By the time half of that stuff has gone in, I'm getting rather bad stomach pains. Soldier on, and spend time laying on my stomach reading. Why not sleep? My butt does this wonderful.... how to describe it? Tug-o-war almost? It tries to squeeze out the stuff that's not meant to be in there and is making it uncomfortable, then quickly goes 'No! Wait! That's got to stay there!', or it feels like the diarrhoea it's so used to, so it tries to squeeze it back in. NOT FUN! So it happens with an hour or so before I'd normally go to sleep, but when you need to fart (yes I will be uncouth and use that word) and you're in that much discomfort and pain, it doesn't even stay in that long and you do wonder if it's worth it and how much good that tiny little bit of time is doing. So you see, the doc being away isn't so much fun because a/ he didn't give me any instructions on how to do the thing, but b/ didn't tell me what it would be like or what to do should I have any problems while he's away.

*Doctor also failed to tell me most of the side effects of the meds I'm on. He said I'd get more pimples and would end up moon faced (rather round in the face). He neglected to mention the following:

- Extreme tiredness
- Insomnia, despite above extreme tiredness
- Lack of coordination - seriously, it's taking forever to type this. I go to hit what I know are the right keys but then random nonsense appears on the screen. V. frustrating.
- Difficulty in focusing - takes a while to focus on anything, really shouldn't be driving, but hey.
- Major temp differences. I go from freezing cold one second and craving a few blankets and a hot water bottle, to drowning in sweat and near needing a change of clothes from it. And there'll be no change in the air temp around me, or in my current activity.
- Moods that aren't my own - I went shopping yesterday arfternoon and spent the entire time getting more and more worked up, became convinced rather quickly that anyone and everyone was trying to steal stuff out of my bag, or put things in my bag to frame me, or (better yet) were sidling up to me in order to molest me. Then just got to the point where I couldn't stand being around people and got scared and couldn't breathe. Got to the car and cried. This is not me. I am a confident person most of the time, and the knowledge that I can sit there and go 'hang on, this isn't me', yet not do anything about it is rather upsetting.
- Dizziness and disorientation, which add to making crowds oh so pleasing.
- Extremo with the hunger. I hate it, because I know what I eat already is too much, but I get so damn hungry with the meds that I continually find myself looking for more food. Hate for it!!!

All this and I've only been on the meds a week. I can also expect to look forward to:

- Weight gain everywhere else, and from what I've read of others' blogs, it won't just be a small amount.
- Roid rage (Prednisone is a steroid). May already be experiencing this to a certain degree.
- Pain in my joints.

There's other stuff there too with side effects I could experience. I'll throw a few links below in this post on various things (Crohn's, meds, etc) so that I don't have to retype entire Wiki articles.

Righteo. That's the past few weeks summed up. Now for a here and now update. I'm at work. I'm tired as. I'm sweating. My fingers are sore. I have a twitch under my left eye which is driving me insane (coincidently, it appeared a few months before the HSC then went away afterwards, it's come back again occasionally during times of stress, and funilly enough, it's come back since the diagnosis). I'm a little on the miserable side, mistyping things for work isn't making it easy. I'd actually really like to curl up in the corner behind my chair and go to sleep. Either that, or go home and do the same in bed.

Now for those links.

Wiki on Crohn's
http://en.wikipedia.org/wiki/Crohn%27s_disease

Wiki on Prednisone
http://en.wikipedia.org/wiki/Prednisone

Wiki on Mesalazine (Salofalk)
http://en.wikipedia.org/wiki/Salofalk

Crohn's and Colitis Australia
http://www.acca.net.au/

Lauren Nastasi on Crazy Sexy Life
http://crazysexylife.com/2009/life-with-crohns/