Attempt at an update

Not really all that much to update here, but I'll make an effort anyway.

Went out for coffee on Saturday and enjoyed it. Two cups of the stuff had me buzzing for a while, and the company was good. Also found a really lovely shirt that could have gone okay on me (larger sizing, nice colours/pattern), but it was $70 and not on sale, so I left it there. Am vaguely thinking about going back for it though.

Saturday night I took my parents out for dinner (my brother was away). Have eaten there before, and I love it there. I've normally gone some form of chicken (their chicken is awesome!), so Saturday I tried the flathead. Some of the best fish I've had to memory. Also had garlic bread prior to the meal and promptly doped myself up on Imodium again (garlic is sadly not my friend).

I pick the most stupid times to become motivated. I mean really. Who wakes up with a shite of a head cold, muscles aching from said cold, joints aching from arthritis and goes "I'm going to clean my room today, which hasn't been done in about a year", apart from a mad woman. Stupid decided this was a good idea, and thus by early afternoon yesterday I could barely move. My back's still giving me grief, and my hips, knees and ankles and occasionally complaining too. Stupid joints. Though my room does look vaguely more organised now, despite still needing work done to finish it off.

Also ended up with a bit of the Crohn's pain last night/evening, and a bit of blood, though not as much as there used to be. Doctor won't get this info because I'm still aiming to have the Pred reduced, and I'm fairly sure this info will just make him increase it.

Sick of being fat and hairy. Really sick of it. And sick of the mental state the Pred puts me in too. Stupid stuff.

Off to see the rhumy on Thursday too. Hands are much better, though the pain does creep back a little bit occasionally. It's the rest of the joints now that are giving me problems. Barely managed the stairs this morning. Hopefully he can start the ball rolling for the Humira. Fingers crossed!

Liquid fire much?

So I got a revisit from the liquid fire again yesterday. Frustrating, as I'm trying to eat healthy to avoid more stretch marks (seriously, dark purple, and stinging and burning like all anything). It's either the kiwi fruit, or the tzatziki. Kiwi fruit I can live without, but the tzatziki is delicious. *sad face here* Could also have been the pre-made mashed potato from the day before, or the rice crackers. Bah humbug.

Very tired lately. Also have a cold. Shite of a thing. Slept until eight this morning (major sleep in for me) and only woke up then because I'd set my alarm for then. Had to go out and meet up with a friend for coffee. Coffee is starting to wear off now though, so am crashing a little bit. Hopefully can sleep in tomorrow too. Will be grateful.

Umm.... Crohn's related stuff I think that's about it. Apart from me being fed up with the pred, but then what's new there?

Update

Gargh my butt hurts. Okay, so the poop ain't liquid anymore, but it's not quite solid enough to avoid using half a role of loo paper every time I go. And from the excessive wiping, my butt's now cracked and bleeding. Bah humbug.

Fingers are also getting sore again. So I get maybe three days of relief from the injections? Not sure it's worth it. The money or the pain in the shoulders. Also, hips, back and knees have been playing up too, so yeah. Kinda blah about the whole thing right now. Needing to come off the Pred somewhat badly, but docs won't let me because apparently that's keeping the pain down. How the feck would they know? Nothing was hurting before I started taking that!!!

Fish are being fish. No kitten in the drawer.

I'm tired.

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. :)

Miracles may happen...

So today I'm at work. And my hands work! Yay! As weird as it was yesterday with my hands in agony, it's just as weird that they've done a complete turn around today. Though, I've been typing, and using the mouse, and playing with the blue tack, so I'm expecting they'll be sore later.

Point of this post is that I just had a call from the rhumy's office and they can fit me in tomorrow at 12:30 as opposed to some random date in August, so yay! My boss's response when I told him? "Haha, you'll miss out on the barbeque!" Did I mention previously that my work place is very good with it all? *does a happy dance* Pain relief, here I come!

Meanwhile, last night was a bitch. Went to sleep about 10 or so, woke up at 12 with the sweats. And insomnia. A chapter of Harry Potter and three hours later I finally managed to get back to sleep. Only to wake up again at 5:30 and notice the sweats had continued through the night, despite throwing everything off and freezing. Eh. Can sleep tonight and tomorrow arvo.

No kitten in my drawer. ;D There is a coffee in front of me however, so this nearly makes up for it.

Update through the pain...

So. Attempting to block out the pain while I'm typing....

Went to see the doc yesterday. This time dad came with me. I was amazed at the difference in the doctor this time. He's gone from being Doctor Useless to Doctor Informative or Doctor Caring in the snap of a finger. Maybe he's a bit old school and prefers to talk to blokes. *shrug goes here* Dunno, but it was much better. Anyways. Blood tests and pee tests done last week indicate that there is no rhuematoid arthiritis present, however he did say that the arthitis you can get with Crohn's mimicks it rather than actually being RA. So he's trying to get me in to see a rhuematologist. Was going to phone him today and get back to me today (see below). Also said he won't put me back on the Imuran seeing as the headaches are gone (or at least much better now), which indicates that it was the Imuran causing them. Sadly, this means longer on the Pred, and no backing off it at the moment. It also means he needs to come up with an action plan or something of the sort in conjunction with the rhuematologist in order to treat the arthritis, and also look at getting me onto Humira, which would be awesome in a/treating the Crohn's, and b/getting me the hell off the Pred. No pain relief prescribed. :(

Woke up with my hands still in a degree of agony today. Don't quite understand why as I rested them all day yesterday. Still. Got sorted, went to work. In pain. And it continued to get worse. I lasted 45 minutes before asking if I could leave. Very grateful to the people I work with, very understanding.

About to leave, and my boss had a chat with me. Apparently there was a meeting yesterday which I missed about our work hours and such. Nothing to do with my medical stuff, but because we've had bugger all work coming through lately everyone's being cut back to a three day week instead of the normal five day week. Not hugely shocked by it, well, surprised a little, but it has been extremely quiet. Just a little worried about money and such. Mind, it's not as though I'm capable of working a five day week at the moment with my hands how they are anyway. Just wondering how things'll go with less money, more time to spend it, and more things that I'll have to spend it on. Hopefully things'll go okay.

Was driving home this morning and my phone rang. Doc had phoned the rhuematologist (rhumy from now on because my hands hurt and my spelling is probably wrong). Unfortunately, a/ rhumy wasn't in office until this arvo, and b/he's not able to see anyone until August. AUGUST!!!! That's six to eight weeks of agony before I even get to see the guy! Doc did say however before I could get upset with him (not his fault, I know, I was just starting to goggle over a 6 week wait) that he would write a letter to him, fax it through, and would contact me again tomorrow in the hope of getting me in quite a bit sooner. So hopefully tomorrow I'll have some good news. All I know is I can't survive the pain for that long without some form of relief.

So yeah. Not a fantastic day really. Very very painful, and I'll still not sure why. They're normally a bit better after a day of rest, but they've gone the other way. Stupid hands. Anyone like to trade for a bit? Also, coldy gunk kicked back in a little while ago, so feeling all gluggy in the head and nose too. Blergh. It's raining. Which would possibly add to a bad mood, but I like the rain, so it's a positive. As a result of the hands though, I have spent the day mooching in front of the tv (it hurts to hold a book right now). Dvd of 300, then Dr Phil (crap show, but hey), then Oprah (wow mid day tv is just so exciting!), then Ready Steady Cook (a show I actually don't mind). And now this. Despite the agony, it needs typing. I'm sure there's one or two people at least who read this and possibly want to know what I'm doing, and it helps me keep track of things, so yeah. It is important.

And because I'm only going to be at work three days a week and probably home the other four, I'm looking to bring my fish home rather than on my desk. I'll get a plant or something that's easier to look after if others have to water it or whatever. It also means the fish can have a bigger tank (scrap that, they get a tank as opposed to a bowl), and a filter (zomg!), and if they can behave and stop pulling their plants out then I might get them some more of those too. Spoilt fish they are. ;D But they're cute, so they're worth it.

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.

I Wonder....

Currently there's no one special in my life. It's just me and my lonesome. And I can't help but wonder sometimes, who's going to want me? I wasn't exactly the prettiest person prior to the Crohn's- pastey white, on the chubby side and skin that had gone to hell in a handbasket. But I was working on that. The flab was slowly toning, and the white skin, well.... A few days in the sun would have fixed that. The psoraisis was the only thing I couldn't really get under control.

Now though, the weight's all piled back on, plus more. The first thing the doc did last time I saw him was weigh me. 88 kilos. That's about 28 kilos heavier than I wan't to be (note, actually want to be, not what is recommended. That's even lighter). The pred has packed weight on, and the cravings haven't helped. Pimples! Ugh! Enough already! And seriously, who's going to want a woman with a moustache and sideburns? They're seriously becoming an issue for me. Mum and Dad say they don't notice, but the hair's getting longer, and darker. I know it's vanity speaking there, but really. I shave my legs, not my face!

And apart from the vanity, there's the physical problems. There's the Crohn's itself. Really, who would want to deal with that? I don't, so how can I expect anyone else to? And then the joint troubles.... It's near to the point with my hips, knees and ankles that I possibly shouldn't be driving sometimes. And the hands? With the pain and the shakes there are days I can't do a damn thing.

I just can't help but get a little bit miserable thinking about it sometimes. A lot of the time these days, all I want is someone to be there, to give me a hug and tell me it's all going to be okay, and have the faith that it will be okay just because they said so. But how can I ask that of anyone? How could I inflict myself upon them?

Update of sorts

So I made it to work on Wednesday. Took script for Salofalk to chemist after work. Went to pick it up and was told sorry, it won't be in until tomorrow. Fine, no worries.

Thursday, yesterday, off work again with the pain, so because sore hands equal uselessness, I got to sit there watching Oprah. Dear Gods. Mum also went to pick up the Salofalk and he'd only ordered one box instead of the two on the script. She also took me to a different (read better) chemist later on and I now have wrist strap/support thingers. They seem to help a little in that they keep body warmth in and that seems to limit the pain in the wrists a little, but they do nothing for the fingers, which is sad. Massive headaches yesterday, as well as worrying bouts of dizziness. Though, the nausea hasn't been back since I stopped the Imuran.

Today, I'm braving work again. Still sore, but I need the money, and a feel useless and unreliable by taking so much time off. Also have to drag myself back to the chemist today (day three of the Salofalk saga....) to get the second box. Won't be getting him to fill anymore scripts. There's been too many dramas with my meds that I'm just not happy with. Lucky there's a few others sort of nearby.

Out of sequence I know, but Tuesday night I went to the support group ran by CCA (Crohn's and Colitis Australia). First one in a few years that they've had. I think there were six or so of us there that had Crohn's or Colitis, one of whom bailed early with a look of terror on her face (her partner had a look of disgust on his). Three of us have the same doctor. It was good to be there. I wasn't sure at first if it would be worth it, but we basically just sat around sharing our experiences (which in my case is limited, but hey). It was interesting and actually really helpful to hear the others' stories, they all varied from a guy not much older than me to a retiree who had one of the first ops for it back in 1980 or 1981. I thought that because everyone with IBD has a different story that it would make me feel more alienated and more alone, but it did just the opposite, made me realise that there are others out there. Yeah, okay, I knew that, but meeting some of them made it a bit more real and a bit more dealable.

Am also thinking on doing some fundraising for CCA. Toying at the moment between a Krispey Kreme fundraiser thing (sort of like a lamington/pie drive), or selling my candles and the profits go to CCA (sort of a cheesy 'light at the end of the tunnel' thing if people need a link between candles and crappy bowels - pun intended). Fundraising would give me something to do, and also provide me with hope that maybe through me doing something there will be a cure in my lifetime. It's highly doubted, but one can hope, no?

Weekend, I will be attacking shops. Clothes, and also The Sims 3 came out in Oz yesterday, so I'll be hunting for that and hoping that places haven't sold out yet (yes, I'm a massive Sims geek).

Haven't really come accross any fantastic recipes lately, and the only real food discovery I've had is that store bought potato salad = bad. *shrug* Just means I have to make my own. What a shame. :P

Also, links below! ACCA is the old name for CCA, and the forum is fantastic, even for lurkers like me. ^_^

http://www.acca.net.au/

http://www.ibdaustralia.org/forums/index.php

I like it when my hands work...

I'm having all sorts of fun typing right now, so this is going to be short, to the point, and unedited. Deal with the typos.

Came home form work on Friday unable to type and having all sorts of fun seeing. Hands/wrists/fingers in angony, eyes being special. Hands/wrists/fngers sore all weekedn, to the point where I had trouble lifting a soup sppoon on Sunday night. Yesterday was off work with the hands, same with today. Hurts a bit to type, though not as bad as Friady.

Yesterday, went and saw doctor. Hate scales. Hate that I'm gaining weight at a rapid rate of knots. He's taken me off the the Imuran to see if that gfets rid of the daily headaches. Hand pain could also be related so we'll see. He wanted to up the pred as well, but decided to wait and see. If pain still exists in two weeks I'll be off to visit an arthitis person. Fun! < / sarcasm >. Didn't feel dizzy/nauseas this morning. Interesting. No Imuran = no dizzy/nausea. Did have a headache though. :(

Off later on to try and find wrist support thingers, just to see if they help a bit.

No kitten that I've been made aware of, and the boss is being awesome and feeding my fish.