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!
Showing posts with label support group. Show all posts
Showing posts with label support group. Show all posts
Tuesday, July 7, 2009
Wednesday, July 1, 2009
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.
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.
Friday, June 5, 2009
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
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
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