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.
Showing posts with label CCA. Show all posts
Showing posts with label CCA. Show all posts
Thursday, July 2, 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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