So after various appointments with the doc and multiple blood tests, he's come to the conclusion that I don't have pancreatitis. Thank the gods for small mercies. Pain had pretty much gone since stopping the meds, but the nausea is still there to a certain degree. Am managing food, but still feel rather off, even after the maxalon. Have to get antoher ultrasound done on Monday morning, which means more time off work, just to confirm that it isn't pancreatitis, even though he's already decided it isn't. Then have to go get yet more blood tests (will be the fourth lot in a week) and poop in a jar to rule out infection. Downside to that is I'm still having the varying swings between constipation and diarrhoea. Fingers crossed I can poop on cue hey?

Very worried about work. Doctor ordered me off work last week, and as I'm a temp/on a contract I had to ring in every day (not to mention not get paid for it). By Friday the boss seemed a little bit on the cold side. Doc seemed to be about to order me off work for the coming week too, until I told him I'd probably lose my job if he did that. Still seems rather not happy with the idea of me being at work, but what can I do about it? It's work now and maybe save my job, or not work now and possibly not work for quite some time, and with no savings, that's just not an option.

Oh, also was mentioned that the doc will try again for Humira seeing as the 6mp failed. Theoretically they can't turn me down, but we'll see. It is the government after all.

Anyway, I'm off to find my anti-spew drugs in an attempt to shut my stomach up. Hope everyone is well.

Yep. OJ definitely better the first time.

Managed to drag myself in to work today, though only for a few hours. The back and the pain just below the ribs was really playing up, difficult to move, difficult to walk, hurts to breathe..... Then there's the nausea. While I have no idea what's causing the other random pains, I'm fairly sure the nausea is a result of the 6mp. Spent a while dry retching this morning at work, which the boss commented on when I asked if I could come home. He also seems understanding of the meds, which is great. I believe his wife has some sort of arthritis and she's had the fun of all the hoops to jump through too.

Have had my weekly blood tests done, mum drove me, and have had everything that was in my stomach (ie one glass of oj) come back up. It's not often I have stuff come up, normally I just spend the day running and dry retching, which is actually possibly worse, but yeah. Just feeling very rotten with it all.

Had a red bull this morning. Promptly started falling asleep. Some sort of indication that I'm tired perhaps?

Managed to make an appointment to see the GI tomorrow arvo, so hopefully he'll have some idea as to what's wrong and even more hopefully, how to fix it.

Upside to all of this? ..... Actually still trying to work that one out. Will let you know when I've figured it out.

Don't feel as though I've whinged as bad as usual today. Feels good.

It's a small world after all.....

Yep, just had to go and implant that in your brains.

Meanwhile, yes, a small world, a small world of pain that is. To my recent memory (that is the past few months) I have had one weekend (read three days) where my pain was tolerable, even to the point of being gone. I went away that weekend. It was cold. Like -4 degrees C cold. I skipped. I jumped on the crunchy frosted leaves.  I ate food that I just plain should not have gone near. I rather liked that weekend.

Now that I'm not in the wonderful cold land where my pain seems to disappear (Canberra, I do so love it, will move there one day), my pain is back. Joint pain is there. Normal Crohn's pain is there. Random pain just below the middle of my ribcage that feels as though Wolverine has decided to punch me repeatedly is there, blades and all. And now I have this delightful back pain that I have no idea what I did to cause it. All I know is it's causing me to wake up in pure agony of a night bawling my eyes out. Hurts somewhat worse than it did when I spent the night in hospital after a car crash. Hurts to breathe.

But you know what? I get to just shut up and deal with it. I've had people pull up extremely short of calling me a hypochondriac, and the same said people pull up again extremely short of telling me I'm a nutcase and it's all in my head. I've also been told to stop taking so many pain killers (Note, taking no more than the max daily recommended).

Also been knocked back for Humira. Long story short, random doctors lied to me (what a surprise), and the Government has delightful double standards. Eg recognising something as a side effect, acknowledging it as a reason to stop taking it if it was prescribed for illness A, but not if it was prescribed for illness B. Have been put on 6mp, and have watched it increase the diarrhoea, possibly increase all that wonderful chest pain, and it's possibly causing the wonderful nausea that I've had that keeps getting worse. Can't brush my teeth or swallow tablets without throwing up. Then again, the nausea could just be from the cold that I've managed to pick up somewhere.

Dear world: Had enough, fuck you.

Today's whinge brought to you by....

So I've taken myself off the ibuprofen for my joints in the hope that my stomach wouldn't get any worse.  Have spent today near doubled over in pain and with yellow liquid coming out my butt, along with barely being able to move from joint pain.  Oh, and did I mention I was tired?

Very entirely over chronic illness right now.  I mean heck, I was just starting to look for jobs again too, and now chances are that the GI will say he wants to shove things up my butt and then probably tell me he wants me back on the pred.  What a great way that'll be to start off a new job.

Apologies, I'm not exactly a happy camper.

The usual sort of spiel...

So me and my weight. How's it going? Glad you asked. :P Currently down to 83.2 kilos, which is what I weighed this time last year, before all this Crohn's stuff started (well, at least before I was diagnosed). I do have just under 3 kilos to go however to lose the Pred weight, but that'll come. Have vaguely been watching the story of the guy below, the fitness trainer who became obese and then attempted to lose the weight again to better understand his clients. It make me feel so much better that he struggled too.

http://www.news.com.au/national/paul-james-almost-back-to-his-original-weight/story-e6frfkvr-1225811164362

See? Even perfect people aren't so perfect!

Meanwhile, I've got the cranky pants on with the rhumy. Went and saw him nearly a week ago now, and he basically didn't listen to a word I said. Stuck with his usual story of heat, exercise and massage will fix it, gave me a shot in each shoulder and sent me on my merry way. Shots didn't work and I'm more than a little disgruntled about it. It would have been nice to be in less pain for Christmas and new year, but hey. Obviously that's not going to be the case.

The Crohn's is behaving itself, as best as Crohn's can behave, and the fructose stuff seems to be non existant (I had a self indulgent moment yesterday and had a few slices of garlic bread for lunch. No effects.).

Hold onto your hats ladies and gents, it's an update!

Wow it's been a while since I actually posted something worth writing about, huh?

Well. The old hag is behaving herself (fingers crossed, knocking on wood and praying to every God I believe in!) for now, which is lovely. Have even ventured into the dreaded fructose foods, and guess what? I survived. For now.

In the line of the weight, I yo-yo-ed (that really doesn't look right spelled like that, but it looks more right than any other way I try...) for a few weeks, but I'm down to 84.7 as of yesterday, which is nice. Lost more than 10 kilos (22 pounds), have 1.3 to go to what I was at the beginning of the year, but 4.4 to go until I reach my pre-Crohn's weight. Will be over the moon when I hit that.

And time for an arthritis update. Where I live has been hot. Very hot actually. And with it, the oh so delightful agony of arthritis. So much for using heat to get rid of it. Am saving up the pain, turning it into angry, and will deliver a dose of cranky-pants to the rhumy on Friday when I see him. In, of course, the most polite way posible. Just very fed up with doping myself to the eyeballs on Nurofen every day (which I'm not supposed to take because of the Ibuprofen), and still being in a rather high degree of pain (say 9/10 instead of 10/10). Needs fixing. Pronto.

Am trying to enjoy my time off work, and have just started redecorating my room. Been busy sanding some timber for some shelves today, and threw the first coat of paint on. Absolutely love the colour, and am so happy that it's come out exactly as on the sample chip. Second coat should go on tomorrow, and hopefully put them up in the next week or so. There's also curtains to be made (bought the fabric yesterday for somewhat of a bargain), but they'll have to wait until after Christmas before I can tackle them. Should also be enough to make a cushion cover or two out of the leftover fabric. Am really enjoying the prospect of my shoebox looking a little nicer. :)

Didn't end up making it to Sydney for the Gluten Free expo. If anyone who reads this did make it, could you let me know if it's worth going next year?

Umm...... Anyway, I think that's really it. Finally something to write about huh? Now off to clean the shoebox before it's time to put those shelves up.

Eh.

Whooo! I finally have a full meal I can eat without problems! Potato, broccoli, carrot and stroganoff. *happy dance* It's a relief to be able to say yes, I can eat that meal, rather than, maybe I can eat part of it. Yay! Also, roast lamb seems to go well, which is awesome.

Joint pain is still there, and slightly problematic. Like this morning on the way to work when both hips and my back gave out at the same time. Hating it. And hating the doctor too.

Oh and work? Not only is my boss leaving, one of the people from accounts is bailing too. Oh, and the random salesperson.... My resignation letter is in draft stage in my head. Just a matter of pen to paper and when. I'm so over waking up in the morning and wondering "Am I going to have a job in a few hours?". And I'm over wondering who will leave next. Or when things are going to come crashing down. At least if I pull the pin I'm in control and I know when things are finishing. Right now it's just yet another stress that I don't want or need.

So tired! I'm taking a sleeping tablet pretty much every second night to try and sleep properly, and yet I'm still waking up every hour or two, tossing and turning and just not getting a good sleep. And then in the morning it's as much caffeine as I can pack into one or two cups of coffee (I'm good and don't have any after lunch) just to try and stay awake. Had enough.

Pain (AKA She learns how to put pictures in!)

Hmm..... So. Went and saw the rhumy yesterday. On the plus side? He wants to interfere with the Pred 'cause he wants me off it. This is a good thing. If he hadn't interefered I'd be sitting at 15mg for the next few weeks, which is better than 40mg, but not as good as none. Instead I'm backing down by 2.5mg per week until I'm down to 5mg and we go from there. On the downside? He's suddenly decided that I don't have inflamitory arthritis, despite the x-ray proof, and his previous opinions, and oh, I don't know, the excruciating pain. So. Not only do painkillers not make an appearance, it now seems like he won't be pushing for the humira or infliximab. Bad. Very bad. Because the GI wants me on one for the Crohn's so it doesn't get bad again, but because of all the hoops, we can't get it for the Crohn's. He was relying on the rhumy getting it for me for the arthritis. So was I. Won't go into the temper tantrums, but let's just say it was better I wait a day to post than post straight after I got home.

Also a bit mentioned about sleep and pain and vicious cycles. Oh, and the warmth and massage and exercise to help with the pain. *dumb look goes here* Sure, I don't want drugs if I don't need them, but fuck me, how much pain do I need to be in and how messed up do I have to be for somebody to damn well do something?

I'm just so tired of nearly getting my head around something and then have everything change.

My fish are being cute, as usual. Them, and a glass of scotch and coke settles me. I still get lost in watching them. I swear, I'll glance at the tank and then ten minutes later realise that the quick glance has turned into a ten minute staring contest. With fish. :D

Here are said fish and fishtank
(finally learnt how to put pictures in too!).


Above is one of the cute baby catfish.
Find him! I dare you! :)


And my all too cute black moor, all cured now. :D

Big red buttons...

So my finger is creeping all the more closer towards that giant red button with the word PANIC written on it in bold. Seriously, it's a matter of millimetres.

Still in pain today (whole shebang), but not quite as bad as over the weekend, so I've dragged myself in to work. Find out this morning that my boss (who's ironically enough off with a bad neck, hope he gets better) resigned last week. This bothers/worries me to a fair degree. I still know nothing about the industry I work in, and I rely heavily on him half the time to tell me what things are and how to do things. I'm a little worried that I'll look completely stupid once he's gone (in two weeks) as opposed to just slightly stupid. Then there's the Crohn's. He's been utterly fantastic with it. And the arthritis. Once he's gone I don't know how everyone else will deal with it.

Originally I remember I didn't enjoy this job. And then I got to know the people, and some of the people we deal with, and vaguely I'm getting to know what things are and what to expect. But really......

Pros of staying:
-Comfortable with people
-Easy with the Crohn's
-It's money

Pros of leaving:
-Can go on a holiday
-Can take some time to get fit(ter than I am now)
-Can take some time to get my head around things (I needed to do this months ago)
-Can (definitely) get a job that pays more
-Can (most likely) get a job closer to home (less money on transport, more money to save)
-Won't get stuck with a company that's going under
-Possibly better places for the Crohn's/arthritis
-Meet new people

Umm..... Actually not too sure why I'm still here, truth be told, looking at the above pros and cons. I think it's time I polish up the resume and push the big red panic button.

In other news.... Umm.... Not having a melt down today? Yet? Apart from the above stuff that is.

Am halfway through Breaking Dawn (last in the Twilight saga). Still enjoying it. Also managed to finish watching the Twilight movie. Definitely a case of don't judge a book by it's movie, but I suppose not entirely bad. Love Bella's Lullaby from it, plus the piano scene it's in. Otherwise I think I may be slightly indifferent to it.

My little black fish is nearly better. I think I'll be able to stop turning the water bright green in a few days. Am looking at getting a catfish for the tank too. Should help keep it cleaner. Mind, I'm getting used to cleaning it every second or third day (a little too often perhaps, but hey). Forgot to mention that I did manage to drag myself out on the weekend to a few fish shops. One of them is fantastic with the range in particular, including Nemo fish, and lion/scorpion fish, and starfish..... And they had huge tanks too which makes me itch even more to have a place of my own.

Erm.... Coffee tastes yucky without milk.

Also, Crohn's stuff..... Either chicken volevants (have no idea how to spell that) or apricot chicken severely disagree with me (even though I've previously said that apricot chicken goes okay). So sadly and with much regret, they both get added to the blacklist.

Bah Humbug

So what does a bad cold and joint pain and lack of sleep do to me? Makes me a darn heap grumpier than usual for one. Also makes me tired and snuffly and sore too.

Went to bed about 10:30ish, was asleep by 11. 2am rocks around and either my hip (which had decided I needed pain) or my cold woke me up. Bright eyed and bushy tailed. It's now nearly 12 hours later and I'm still waiting to get back to sleep. Which will have to wait until after work. And dinner.

The cold. The evil, shit faced cold. And yes, I'll swear outright. It's been gradually getting worse, but never really anything more than a snuffly nose and a vaguely stuffy head. My throat is butchering me, and I'm having all sorts of fun hearing. Again, this is since 2am. And I now have a drawer of my desk solely dedicated to cough drops. I have Butter Menthols, Eucalyptus and Honey things, and then just plain ol' Eucalyptus ones.

And then there's the joints. Usual whinging about them and the doctors goes here.

I think I may need to march myself off to the GP and get him to give me painkillers and sleeping tablets and something for the cold/flu. I can't see my sanity remaining intact much longer if this all keeps up.

On the other hand, my dosage of Prednisone was reduced again this morning to 20mg. Could other people please do the Yay Happy Dance for me? This involves jumping up and down slightly, though not too much, squealing like a child, waving your arms, and flapping your hands. Grinning like a mad person is also part of the Yay Happy Dance. If it helps, have a strong coffee about ten minutes before doing said dance. I would do it myself, except the above mentioned crap is kinda weighing me down and outweighing the happy.

Mentioned breeding fish at home last night. Surprisingly, didn't get any form of argument from my father. Coulda knocked me over with a feather. I think though that there may be slightly stronger protesting if I went about trying to set a tank up at home though. Eh. We'll see.

Speaking of fish, my fish at work are still going well (albeit unnamed). The little black one still has his white spot on his side, but I don't think it's getting any bigger, so there's a plus. Still, I've made the water go bright green again. It can't hurt, and hopefully it'll start clearing it up soon if I keep the treatment up. Cute little thing. Hope it isn't hurting him. :(

No kitten in the bottom drawer. :P

Disney and pain

Hmmm. So. The weekend. It existed. There we go, that's a start. :)

Saturday came and it was sunny! It's been raining a fair bit recently, or at least threatening to, so I took the opportunity to do what the rhumy suggested and go for a walk. I packed me and the camera into the car and went to a nearby botanic gardens and went trigger happy. It was nice to get out and relax for a few hours, but things started aching a bit.

Got home and got sorted out again and then off I went to go and see the magic that is Disney On Ice - Princess Wishes. Me? Adult? I think not! Was going with a friend, so went to pick her up from work and had a coffee while I waited. Double shot latte. Do you know how long it takes for a double shot latte to start wearing off? At least four or five hours. Be afraid.

Disney was amazing! The skaters were fantastic, the music was obviously Disney awesomeness, the costumes were gorgeous to the point that I wanted to run down there and steal them (particularly the Flounder and Lumiere ones)... My inner child has never loved me so much! Bought a program as a souvenir (it came with a pretend rose), and a stuffed toy of Sebastian (I may love him a little too much, and mostly just because of that accent).

Had dinner afterwards in the form of some very yummy fried rice. This was after my attempt at reverse parking. Not such a good idea when coming down off a coffee high. I think I gave up after about the tenth attempt when I just sat there giggling. Easier to find a different park.

Also felt rather pretty on Saturday night. I put effort in. I wore my pretty top that cost me $70 odd, and I let my hair curl, and I wore mascara. And when I got home and caught myself in the mirror, I actually felt pretty. I should try this more often. I should also have taken a photo so I'd remember it.

Speaking of photos, of nearly 400 taken at Disney, only about 3 came out clear. They were all moving too fast!

Saturday night was met with agony and insomnia. Pain in my back, hips, knees and ankles that woke me up and then the delightful insomnia that kept me awake from 2 till 4:30. My rhumy? He says to me last time, "Go for walks, get good sleep, they'll ease the pain.". Yep. 'Kay. How about some pain killers for the agony those walks give me? How about some sleeping tablets to get rid of the insomnia? Oh, you don't want me turning into a druggie? Well you and the GI don't seem to have much of an issue pumping me to the eyeballs with steroids! Pain relief please now!

Dragged out of bed about 10:30 on Sunday morning, having been awake for ages trying to get back to sleep. In utter agony most of the day. Took me over an hour to make my bed. Seriously need something done and I don't see the rhumy again until the 14th of August. Grumpiness will ensue.

Today, still stiff and sore, though not quite to the extent of yesterday. Just taking things as easy as possible. Also plotting for next weekend. Perhaps skipping the walk because I plan on being on my feet a fair bit cooking. Am thinking lasagna and garlic bread. Well, really I'm thinking garlic bread, and whatever main I happen to think will go best with it at the time. :D I love garlic bread.

This is me, giving Crohn's and arthritis the finger.

So I'm fed up of not being able to do things because I'm too sore, from one or the other of Crohn's or arthritis. Absolutely fed up. So I'm giving them both the finger and saying stuff you to them both. To start my protest against them both (possibly moreso the arthritis right now), this weekend I have: cooked. Twice. Been shopping. Multiple times. Exercised! 45 minutes on the Wii, mostly boxing. I won't move tomorrow, but it'll be worth it. I have also eaten copious amounts of things that are bad for me (both weight wise and making-me-poop wise, see bolognese and burritos).

Shopping, I finally caved, admitted I'm fat (like the giant purple stretch marks weren't a give away...), and went into the shop I've not had to go into before. The plus size shop. Albeit the plus size shop with pretty things. Just one issue I have with the place (apart from not wanting to be plus size), is that it seems plus size stores assume that because you are large, you have extra money. Ie, a shirt that you could buy in a size 16 in a regular store may cost say $15 to $20. Maybe $25 at a push. Take same shirt (even same size because that's what size the clothes start at there) and put it in the plus size store, and bam! $50 thankyou. I'm not kidding! Cheapest thing I got was $50. I spent nearly $200 and walked away with a pair of jeans, a shirt, and a kaftan. Normally I would pay no more than $60 for the lot. But hey. I bit the bullet, I've admitted I'm fat, I found some clothes that I can wear at the moment while my pudge is doing the whole white rolly fat thing, and in the meantime I can work my backside off and try to get to where I want to be (a whole few sacks of potatoes lighter).

As mentioned, have also cooked this weekend. Carrot cake came out lovely. Nice and moist, tasting of cinnamon, and yeah. Quite please with first effort at one of my fave cakes. Also cooked dinner last night, a Jamie Oliver recipe titled "The best chicken and sweet leak pie with flakey pastry". Didn't turn it into a pie, left it rather as a stew (filling without the pie) as the recipe said you could, and served it with potato, pumpkin and peas, and did some puff pastry squares in the oven to go on top. Went down well, with even my brother (world title of fussy eater could be held by him) saying he liked it and I can make it again. Just as well 'cause the amount I made (one quantity, supposed to feed four) made enough for two meals for the four of us. Oops. But it was nice.

For anyone interested, the recipe is in his Jamie's Dinners book. Bloody fantastic book, well worth the buy.

Have also started knitting a scarf, much to my fingers' disgust. But I figure, they already bloody hurt (as do my hips, knees, back, etc, etc), so why the hell not? In theory, can't make them worse...

Found season three of Weeds on dvd (finally!) the other day as well, so bought it and have been getting my fix. Note: I do not promote the use of any drugs other than those prescribed by a doctor, Western or traditional. Except for, of course, my beloved Bundy rum. :) And even then, drink only in moderation people!!! Too much is bad.

*Insert obscenities here*

So yesterday right? Dad cooked dinner. Nothing wrong with that, dad usually cooks dinner, and it's usually something I enjoy and tastes great. No exception last night, fantastic bolognese. Enjoyed it greatly. At least, while I was eating it I did. Slept kinda alright, nothing to indicate anything was wrong.

Today, woke up, went to the shops. Felt mildy off, couldn't quite put my finger on it though. Coped alright, and then came home and had lunch. Maybe around 1 or 2 this afternoon though? Liquid. And slime. And blood. Expletives go here. Three Imodium later, and I'm still not sitting entirely comfortable. Blood could possibly have just been from a split (my butt seems to be doing a good job of getting those lately), but it was a fair amount if that were the case. Mind, it has eased, so I'm crossing everything I can and hoping that's what's going on. Still vaguely slimed up and liquidy. In any case, bolognese is now a definite no-no. *sad face goes here* I quite enjoy a nice bolognese.

Joint wise, fingers aren't quite as bad as they were yesterday, though still twinging occasionally. At the moment/most of today it's been my hips that are causing the biggest problem. My back and knees and such are twinging a bit too, but hey. Oh, and I got woken up by yet another shite of a cramp in my leg, this time my left one. Funny how before all these meds started I'd only ever had one cramped leg in my entire life, and since starting the meds they've been occurring quite regularly. Extremely painful, both physically and mentally (I need some uninterrupted sleep, damnit!).

Unrelated to the Crohn's or arthritis.....

Bought another soapstone hippo today at the Oxfam fairtrade store. This one's for on my desk at work. Also bought two cds (rainforest and Aussie bush sounds) at Australian Geographic, and bought a soft foam ball thing that looks like the earth for my brother. Think he likes it. Not sure. *shrug*

The rainforest cd is good- calming, relaxing. Quite enjoying it. Had it on for a while ealier with a candle going. Worked on some of those things to stick up on the wall again this afternoon. Seriously, I've now got those motivational bits stuck up on my wardrobe door, and they're unmissable from anywhere in my shoebox of a room. Told you I meant to do it! :P Mind, I did promptly ignore most of them and eat pizza for dinner (let's see how that goes tomorrow....).

Pain.

Owww...... Sore as all get out today. Fingers, hands, wrists, elbows, shoulders.... Hips, back, knees.... Heck even my feet and toes are aching. I get the feeling that maybe the amount of Pred I was on was helping, even if only slightly. Thus, reduced amount of Pred equals increased amount of pain.

In all probability, none of the above is going to be helped by the stupid cold I have that just won't go away. Sinusy and snuffly and very foggy in the head, plus the odd muscular ache and pain. Bah humbug.

Otherwise, am enjoying a lesser amount of the evil (aka Pred) and hopefully it won't be too much longer before the weight and hair on my face start disappearing. Yay!

Oh, and am letting my inner child loose and going to see Disney On Ice with a friend on the 18th. Who said there was such a thing as too old for Disney? Dirty talk that is! ;D

Have the next four days off work too. Obviously the weekend is there, but I get Thursday and Friday off too this week. Work's a bit quiet, but it's starting to pick up again, so just until we get a bit more in I get a four day weekend. Will sleep in I think. And go shopping. And maybe do some cooking and drop it in for people at work. :) I'm a nice person. :P

Meds and Money

Went and saw the GI yesterday after work. Things seem to be going okay. Inflammatory markers are within normal/close to normal. At the request of the rhumy, the Pred has been reduced. Instead of 40mg a day, I'm now on 30mg for a week, then 25mg for a week, then down to 20mg. I stay at that until I see the GI again, in about a month. Am somewhat stoked about this, just still scared that I won't be able to be weaned off it completely.

There was also talk about Infliximab as opposed to Humira. It was mentioned in the letter the rhumy sent the GI, so I guess that's the one they're going to aim for. It also seems the rhumy will be the one dealing with that, because while there's hoops to jump through either way, it seems for the arthritis they're just hoops, but for the Crohn's it appears they like to douse them in flammable liquid and set them on fire. Oh, and maybe blindfold you for good measure too. Not so sure about the Infliximab, but will worry about it when they're actually going to put me on it.

Am sore today. Elbows, shoulders/upper back, and my fingers are going too. Worried slightly that it could be from the drop in Pred. Will have to keep an eye on it. Am very tired too. Need sleep.

Support group tonight. Hoping to make it. We'll see.

Payday tomorrow. And late night shopping on Thursday. There's a shirt I've seen somewhere, and despite it being $70 I can't get it out of my head, I think I'm going to go and get it. Or at least try it on. :)
Plants may or may not be going to appear on my work desk. Am leaning towards those small bamboo plants in the pretty pots, just for ease of looking after, and also because I have a rather not so green thumb. Seriously, I have managed to kill every single plant I've owned, and that's saying a fair bit seeing as the only plants I've ever had have all been cacti.
Am also going to spoil my fish. They've been swimming around in an unfiltered, 6 litre bowl since I got them, along with the two or three plants (which I might add, they've finally stopped uprooting!). There's a tank I'm looking at getting them and setting up over the weekend which is significantly bigger (20 litres), and includes a filter and (I think!) a light. Will also get more plants for them, a different brand of weekend feeders (they're fussy buggers and won't eat the current ones I get for them), and maybe a statue or two for decoration. If they're lucky they might get some live food too. :) See? I'm a good pet owner.

Gargh hands hurt!

Weighty issues....

So I went to work on Friday. And I actually worked a bit extra too. Just some work for a customer that needs doing rather quickly so yeah. Extra time got done. Doesn't worry me, I offered to do it, and it'll make up maybe a little bit of the time I've had off with my hands. Also decided on Friday night that if I was well on Saturday I'd go for a drive (Dad wasn't feeling up to going to Sydney for the symposium).

Saturday I was woken up by a shite of a cramp in my right leg. Bitch! I need that leg for driving! Let it calm down, massaged it a bit, then crawled out of bed to see if I could walk. Walking was doable, so I packed me, the camera, the Imodium, and the two rolls of loo paper into the car and off I went. Stopped for breakfast and was about to go again when I got a phone call from a really good friend. Just to chat, but it was fantastic to hear from him. He has a bad habit of calling once I've already gone to bed, and my phone's usually on silent anyway. Set off again and started enjoying the day even more. That lasted maybe another hour until the cold symptoms kicked in (again!). They just won't go away. Kept going, and took one of my usual drives through the Hunter Valley.

I love that place. I was raised there. It's home. And there's usually a very strong pull at the heart strings to go there and stay there. It was missing yesterday. Something wasn't right. It was still a very pretty drive through the country (what I remember of it, I slipped into auto pilot because of the cold), but it didn't tug the heart strings, and that makes me a little sad. For years, despite not living there anymore, it's been the place I go to to think and to calm down when I'm stressed or angry or upset. And I always feel free and safe and welcome there. But I just wasn't getting that yesterday. It was just another place, with no meaning. I'm not so much sad that the feeling is gone, it's just I've always viewed myself as belonging there because of that feeling. With the feeling gone, I guess I don't really belong there anymore, which is fine, but what bugs me is where do I belong then? If I'm not still the country kid at heart, then who am I? I know I'm a little lost right now, but that's about it. Maybe I need to start creating the person I want to be. I dunno. Random thoughts that probably don't make sense. Eh.

I've thought recently that my stretch marks have been a little bit painful. Stinging, burning, that kinda thing. Last night I discovered that yes indeed they have been painful, and there's a reason. They're actually splitting open. Well, at least one has. Just a small split, but enough to bleed. I've fattened up at a rate where I am actually splitting my skin. Embarassing much? So the crash exercise/eating regime has begun (again. For the gazillionth time.) today. As a result, I got to weight myself on the Wii. When I first bought that, I entered that I wanted to lose 10 kilos. Instead I have managed to gain more than that. I'm now up to 91.5 kilos. A kilo a week gained. And it takes me a month to lose a kilo. I'm a year behind where I wanted to be. Actually, more than that, but hey. Hopefully if I hit things hard I can speed that up a bit. And coming off the Pred is now a big issue. I can't stay on a med that is essentially causing me to split myself at the seams. Glad in a way for that arthritis now.....

Today, woken up by fecking birds. They're the nuisance Minahs, and they insist on tapdancing on the tin roof under my window and squawking as loud as possible. Then they repeat the process on my window sill. Bastards. I needed sleep! Dragged out of bed, wandered around some shops, exercised on the Wii, wandered around some more shops and came home again in pain. The muscle in my leg that cramped yesterday is being a bitch and is all tight and sore. As a result it's making me walk funny, and thus my knees and hips have given out, and my back's following suit. And I can't really do much more in the intended line of exercise now either. :(

Am also tired as all buggery. Despite it only being 2:30 in the arvo, it feels like I should have been asleep for the past few hours. It really feels so much later. *sigh* And I have to drag out of bed for work in the morning. Bah. I just need a few days where I can sleep for as long as I need to, not how long is dictated by the alarm, or my screwed up body, or the damned birds! Never mind. Coffee is a god. :)

And now off to write pretty brightly coloured motivational signs telling me "Don't eat bad foods!" and "Don't give up now!". ........Yes, I seriously am going to do that. Splitting your skin is scary stuff people! It calls for drastic measures! :D

Trip to the rhumy...

Went and saw the rhumy today. Surprise surprise, I have arthritis. What actually was a surprise is that I have two different sorts. The first one is some form of inflamatory joint one (didn't give me a name, I forgot to ask), which the Pred is possibly helping. The second one is one that affects the tendons and such, which the Pred is most likely aggrevating. So in a way I was right, the Pred is causing some of my pain. Currently, my xrays help me qualify for Humira, the blood tests don't. However, they most likely will once I'm off the Pred. It just means coming off that first. So rhumy's going to have a chat to the GI, so hopefully on Monday he'll start weaning me off that. And I didn't even have to ask!

In a way no more Pred will be fantastic. No more yucky side effects, and hopefully weight loss will ensue. I am scared however of the possibility of more pain. Yes, pain scares me. I deal with a fair amount of it on a daily basis, but the thought of more pain honest to Gods makes me curl up slightly into the foetal position and my eyes do water slightly at the thought. So here's to me being brave.

So no pain relief given. Apparently nothing much will work anyway, so he's suggested heat packs (which don't really do anything), massage (not really leaning favourably towards letting people poke and prod at the sore parts of me), and gentle exercise (hello? Did you not listen when I said I can't move from the pain?). I've basically just gotta ride it out until they can try and get Humira going for me. And now I'm slightly scared that something will go wrong and I'll either not qualify or I'll have to pay full price (which there's no way on this earth I can afford, no exaggeration) or I'll have a reaction to it and be back at square one.

*sigh* I hate all this guess work. And I really hate everything seeming to go wrong, and then multiply. Bah humbug.

Possibly not going to the symposium either. My brother isn't well and needs trips to hospital every now and then, and it's looking increasingly likely that he'll need to go in over the next few days. Both parents are generally involved with that, and there's not really much of a chance of me driving to Sydney and back on my own. *shrug* Ah well. Maybe next time.

Owwies and Planning

Stocktake of the owwies this morning... Both hands/wrists/fingers. Both elbows. Back. Right hip and knee. Left shoulder and knee. Neck to a certain degree. Also have Crohn's pain (either from Maccas for lunch yesterday or pizza for dinner, I had a bad day) and the coldy/fluey crap that's going on.

Off to see the rhumy tomorrow. Wondering what's going to happen with that. I mean, it's gonna cost me a fortune, and possibly all that's gonna happen is that I'll be told I have arthritis, which he told me last time anyway.

Saturday I'm possibly off to Sydney for the CCA symposium. Will mean an early start, but hopefully dad won't hate me too much if I sleep in the car on the way there and back.

Sunday I'm going to attempt to make it to the local farmers markets. I used to get every fortnight, and then every week when they changed to that, but I haven't had the energy in months now. That needs to change. Planning on doing a stall there one day (it's a craft market too), so will need to be able to drag myself out of bed early enough for that.

Monday is work, then the GI doc. Seriously need off the Pred. Struggling to get out of bed some mornings with the state of mind it puts me in, not to mention all the other delightful side effects I always whinge about. Promise I'll stop whinging about them when I come off the Pred. Promise! :P Hopefully he can get the ball rolling for the Humira too, if the rhumy doesn't do it tomorrow.

And then Tuesday after work (as long as I'm not dead to the world) is the monthly support group thinger. Hoping to go. It's good to know I'm not entirely alone in the world.

So I'm a teeny bit busy for the next week or so. Will probably run myself into the ground and take a few weeks to recover, but hey. That's what I do.

New financial year starts today, so new plans are starting to take shape. Want to do another Tafe course, but not through Tafe. Can't stand the thought of going back there, and besides, I wouldn't be awake enough of an evening, which is my only available time. So I'm looking at paying $1500 instead of $900 and doing a Cert IV in Small Business Management through the distance ed part.

Also hoping to do the market stall, but a lot of planning still needs to be done, and as such it may not happen this year (calendar or financial). We'll see.

Hoping to buy a laptop to be of use with the market stall stuff, but also I want to get back into writing. I used to write a lot, but haven't in recent years. I like the idea of running away with a laptop to a beautiful quiet location and being inspired by that and typing away for however long the computer lasts before the battery dies. Sounds like fun to me.

And my photography. Need to get back into that. I've hardly done any since I did a friend's wedding shots, I just haven't really been motivated to. Need to fix that and get some nice shots again. There's a camera that I'm looking at, it's actually better than my current one spec wise, but the main thing I'm after it for is that it's a compact one, and while my current one is an amazing camera, it's a large clunky one, so it makes it difficult to take it certain places. No point in buying a new camera though if I'm not going to use it.

I'm noticing with this blog that it's becoming more or less my main blog, despite originally starting out as a place for the Crohn's. I was trying to separate the Crohn's from my life, as well as keep my sanity. Neither have happened. :P So I'm not going to bother trying to keep things separate from now on. Random stuff will appear in here, completely unrelated to my bothersome gut, so I guess I'll just tag the Crohn's related stuff with Crohn's and the rest will be the rest. Don't worry, it'll probably still be about the same as it is now, just maybe slightly better tagged?

PS- No kitten. I still really want that kitten.
PPS- Didn't win lotto last night. Bugger.

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.

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.