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!

Awareness

http://awarenessgiftboutique.com/cgi-bin/store/cpshop.cgi/causescg.awarenessgifts.6036038+crohns-disease-awareness-t-shirts-and-gifts.html

I was looking for what colour the Crohn's awareness ribbon is (turns out it's dark purple) and scrolling through the Google search results and found the above site. Well, moreso the main page of it, and I started crying. Relief. Someone at least is taking the effort to try and promote awareness of my disease, someone is trying to promote awareness that it needs a cure. I think I might just love this person.

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.

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. :)