Well it's been a while. Things have been pretty good, until the last few weeks at least, so I guess that's why I'm back in the blog-o-sphere. Always thought I'd keep blogging even when things were good. Guess I didn't after all. Anyways.
The last year and a bit has been pretty amazing actually. I've had cold after cold but the Crohn's has been fairly under control, thanks to the wonder drug Humira. I've had luck at work, I've been on secondment for the last 12 months, and I love the team I'm in. The people are brilliant, the work is good and the pay is pretty damned sweet.
Today also marks 12 months since I exchanged contracts on my house. :) Worked hard, and got pretty much everything I had ever asked for in a house. A large block, a good house, a good location. Pretty lucky.
And to top it off a pretty amazing man walked into my life last July. He's a pillar of strength, and I'm still awed every morning when I wake up and realise it's real, that he is here and it's not just a dream. And the last few weeks I've needed his shoulders to cry on and he's been unfaltering in his support.
A few weeks ago I was carted off to hospital with chest pains, which thankfully have turned out to not be heart related, but have left a bit of a mystery as to what has caused them. The last few days that I was off work with the chest pains, I started getting the runs. With slime. And blood. So off to the GI I went. So far, about the best he can tell me is that it might be a flare. Might. The bloods all looked pretty good a while back when I first started feeling bad. Not sure what they're like at the moment, see the GI again in a bit over a week. In the meantime I'm on the beloved flagyl. So of course the stomach pain is worse, the 16 imodium I've had in the last 48 hours has doesn't nothing, the blood and the slime and the gas and the bloating has all gotten worse, and let's not forget the vomiting and nausea. Bad enough that I'm now off work, unpaid, due to the side effects of the flagyl. And the GI is insistent that I remain on the flagyl. At least I don't have the metallic taste in my mouth this time.
The next step is back on the prednisone in addition to the Humira. I'm dreading it. When the GI told me that on the phone I had a minor panic attack, for want of better words. All I could do was sit there and cry and rock for a while. And all the while I know that that's where I'm going to end up. The flagyl just isn't working, and I'm so pissed off that the GI is telling me I have to stay on it when all it's doing is resulting in me facing the possibility of not meeting a house repayment.
I feel almost like I'm back at the beginning of Crohn's. I feel I'm facing the unknown again. I don't know what's even happening a the moment. All I know is I'm in pain, mostly made worse by the flagyl. And the doc won't take me off it until he throws me back on the pred. And if that doesn't work? Facing maybe the possibility of surgery.
I dunno. Just feeling lost, so I guess I'm back here again for a bit.
Might take a holiday, but I guess you won't see the end of me for a while yet.
Showing posts with label doctor. Show all posts
Showing posts with label doctor. Show all posts
Saturday, March 23, 2013
Thursday, February 10, 2011
Hmm... I think by the looks of things that an update is in order.
Canberra? Scratched. At least for now. Going through school I always had a definite idea of who I wanted to be and what I wanted to do. Now though, I have absolutely no idea. I think this should be my priority, working this out, before I go running around the countryside (as beautiful as it is) like a chook with my head cut off. Maybe one day though.
Speaking of running around the countryside, I've been treating myself occasionally to mini holidays, one day on the weekend where I disappear somewhere holiday-ish. One weekend I went up the coast, found some beautiful little coastal towns, and just generally enjoyed the drive. A week or two later I went south, found Somersby Falls, and fell it love with the place.
I have plans for other places, zoos, aquariums, more waterfalls, but honestly I've been very lazy and boring since. Work, sleep, more work, attempting more sleep, work, whinging about lack of sleep.
Which leads me to bitch about my gut doctor. He is unable to find a reason in my blood tests to explain why I am so tired all the time, so rather than send me to a sleep specialist or someone who may have a clue, he's come to the conclusion that I'm depressed and need to see a shrink. Based solely on the fact that I'm tired. Never liked this doc from day one, now? Just hate him. Consequently, have not booked myself into the shrink, and have no intention of ever doing so.
Currently, sitting at home nursing a gastro bug. Not the Crohn's, that's under control with the Humira, blood tests back me up. Not the fructose either, been avoiding that. But gastro? People at work have had a similar bug, and despite them being able to take paid sick leave they didn't, and now I've got it. And I don't get paid sick leave. So I'm missing out on a weeks pay because people thought sharing was caring. I'd rather they didn't care. Went to see the doc yesterday about it, just a GP in a bulk billing place, and the moment he heard "Crohn's" he ignored everyting else I said. Didn't bother trying to diagnose me, and the certificate for work says a Crohn's flare. Bastard. At least I didn't have to pay, it's just so infuriating that they feel they have the right to put everything down to that. Seriously, I get the feeling this doc would have put a sore toe down to the Crohn's. Maybe even grey hair. Eh. I hate doctors. Is it any wonder?
Enrolled in a photography course to start in March, only goes for four weeks, one night a week, but thought it might be nice. S'pose I'll find out in March. :)
Anyway, hope everyone is well.
Canberra? Scratched. At least for now. Going through school I always had a definite idea of who I wanted to be and what I wanted to do. Now though, I have absolutely no idea. I think this should be my priority, working this out, before I go running around the countryside (as beautiful as it is) like a chook with my head cut off. Maybe one day though.
Speaking of running around the countryside, I've been treating myself occasionally to mini holidays, one day on the weekend where I disappear somewhere holiday-ish. One weekend I went up the coast, found some beautiful little coastal towns, and just generally enjoyed the drive. A week or two later I went south, found Somersby Falls, and fell it love with the place.
I have plans for other places, zoos, aquariums, more waterfalls, but honestly I've been very lazy and boring since. Work, sleep, more work, attempting more sleep, work, whinging about lack of sleep.
Which leads me to bitch about my gut doctor. He is unable to find a reason in my blood tests to explain why I am so tired all the time, so rather than send me to a sleep specialist or someone who may have a clue, he's come to the conclusion that I'm depressed and need to see a shrink. Based solely on the fact that I'm tired. Never liked this doc from day one, now? Just hate him. Consequently, have not booked myself into the shrink, and have no intention of ever doing so.
Currently, sitting at home nursing a gastro bug. Not the Crohn's, that's under control with the Humira, blood tests back me up. Not the fructose either, been avoiding that. But gastro? People at work have had a similar bug, and despite them being able to take paid sick leave they didn't, and now I've got it. And I don't get paid sick leave. So I'm missing out on a weeks pay because people thought sharing was caring. I'd rather they didn't care. Went to see the doc yesterday about it, just a GP in a bulk billing place, and the moment he heard "Crohn's" he ignored everyting else I said. Didn't bother trying to diagnose me, and the certificate for work says a Crohn's flare. Bastard. At least I didn't have to pay, it's just so infuriating that they feel they have the right to put everything down to that. Seriously, I get the feeling this doc would have put a sore toe down to the Crohn's. Maybe even grey hair. Eh. I hate doctors. Is it any wonder?
Enrolled in a photography course to start in March, only goes for four weeks, one night a week, but thought it might be nice. S'pose I'll find out in March. :)
Anyway, hope everyone is well.
Sunday, April 18, 2010
Bruised butt? Bring it on!
Huh. So it seems that not only do I get spam in English in my inbox offering to make my assumed penis 'absolutely massive to wow the ladies' (just for the record, the last time I checked I was well and truly female), I'm now getting similar spam in Chinese on my blog. Dear Idiots, you're just ever so slightly sucktacular. Word verification now on.
Ahem. A blog. :)
Is it possible to bruise the inside of your butt? In the last few weeks I've gone from liquid or normal, to lumps of cement. The other day, that delightful "You need to go yesterday" sensation occurred, so off I bolted. And then it got stuck. Me sitting there going bright red in the face and getting a lovely headache from the straining and The Lump just stuck there. It wasn't going out, it couldn't be pinched off like usual, and it sure as heck wasn't going back in. Eventually, The Lump moved, and I thought all was good. Until I had the urge to go again. It moved, but oh Gods it hurt! No blood, so I'm guessing no cracks (pun not intended), but really. Is it possible to bruise the inside of your butt?
Pain relief is proving rather difficult lately. The stuff I take has ibuprofen (which I know is bad, but the docs don't seem to wan't to give me anything else) and codeine in it. There's been a change in the system now so that from the 1st of May, if you want to buy a box with more than 30 in it, you need a prescription. Now some may say 30 is all well and good, but here's the catch. You can only buy one box, once every five days. I go through eight a day, so I'm a little bit screwed. About the only way around it is to hit up all the different chemists in the area, and that's gonna take a fair bit of time. So I think ultimately I'm just going to have to throw a tantrum back at the doctor when he doesn't want to prescribe me anything, and he's just going to have to refer me to a different rhumatologist. Something needs doing and if I can't access the meds that make things slightly better then I think some heads need to roll. I'm the patient, damnit! The whole gig goes, I give you money, you make me better. Not I give you money and you ignore me.
All ranted out. :)
Still unemployed, possibly hitting up a government agency thing tomorrow to see if there's any welfare payments that I qualify for and if they can help me find work. Tried some recruitment agencies, but it seems the Crohn's could be an issue for them (as in everything was going fine and great guns until that was mentioned). Unfortunately, nothing to prove that it's discrimination, so I've got nothing to throw at them.
Trying to keep my sanity through various methods. Long drives are unfortunately not an option at the moment, they seem to land me in a fair deal of pain. I'm managing sometimes to get a bit of work done on the blanket I'm making, and I'm chewing my way through the books I've got piled next to my bed.
I've also taken to collecting paint chips. Not as crazy as it sounds! Five figures in the red, no job, no money, but my goal is to start investing in property, starting first with my own home. Paint chips keep my head up by reminding me of all the pretty colours that are going on the walls when I get the place. And then that sparks ideas for the floor (polished floorboards, which will be so much easier on my back than carpet when it comes to cleaning) and the kitchen (massive old country style) and the backyard (bring on the chook shed and veggie patch!). So yeah. Weird yes, but not completely insane. :)
Oh! Fish update! Still have all three goldfish and the remaining catfish. Still in their craptacular tank, bar my little redcap. It seems like he has some sort of cyst on his side and because I'm not sure if it's something contagious he's been in an isolation tank for a little while. The cyst doesn't overly seem to be bothering him, and I think because of the extra space they all have now, they're all growing. Not quite so tiny anymore, but still what the fish stores are selling as small. New fishtank will come with money which will come with a job, so one day. :)
Also thankyou to all for the support. Each new day is another foot infront of the other.
Ahem. A blog. :)
Is it possible to bruise the inside of your butt? In the last few weeks I've gone from liquid or normal, to lumps of cement. The other day, that delightful "You need to go yesterday" sensation occurred, so off I bolted. And then it got stuck. Me sitting there going bright red in the face and getting a lovely headache from the straining and The Lump just stuck there. It wasn't going out, it couldn't be pinched off like usual, and it sure as heck wasn't going back in. Eventually, The Lump moved, and I thought all was good. Until I had the urge to go again. It moved, but oh Gods it hurt! No blood, so I'm guessing no cracks (pun not intended), but really. Is it possible to bruise the inside of your butt?
Pain relief is proving rather difficult lately. The stuff I take has ibuprofen (which I know is bad, but the docs don't seem to wan't to give me anything else) and codeine in it. There's been a change in the system now so that from the 1st of May, if you want to buy a box with more than 30 in it, you need a prescription. Now some may say 30 is all well and good, but here's the catch. You can only buy one box, once every five days. I go through eight a day, so I'm a little bit screwed. About the only way around it is to hit up all the different chemists in the area, and that's gonna take a fair bit of time. So I think ultimately I'm just going to have to throw a tantrum back at the doctor when he doesn't want to prescribe me anything, and he's just going to have to refer me to a different rhumatologist. Something needs doing and if I can't access the meds that make things slightly better then I think some heads need to roll. I'm the patient, damnit! The whole gig goes, I give you money, you make me better. Not I give you money and you ignore me.
All ranted out. :)
Still unemployed, possibly hitting up a government agency thing tomorrow to see if there's any welfare payments that I qualify for and if they can help me find work. Tried some recruitment agencies, but it seems the Crohn's could be an issue for them (as in everything was going fine and great guns until that was mentioned). Unfortunately, nothing to prove that it's discrimination, so I've got nothing to throw at them.
Trying to keep my sanity through various methods. Long drives are unfortunately not an option at the moment, they seem to land me in a fair deal of pain. I'm managing sometimes to get a bit of work done on the blanket I'm making, and I'm chewing my way through the books I've got piled next to my bed.
I've also taken to collecting paint chips. Not as crazy as it sounds! Five figures in the red, no job, no money, but my goal is to start investing in property, starting first with my own home. Paint chips keep my head up by reminding me of all the pretty colours that are going on the walls when I get the place. And then that sparks ideas for the floor (polished floorboards, which will be so much easier on my back than carpet when it comes to cleaning) and the kitchen (massive old country style) and the backyard (bring on the chook shed and veggie patch!). So yeah. Weird yes, but not completely insane. :)
Oh! Fish update! Still have all three goldfish and the remaining catfish. Still in their craptacular tank, bar my little redcap. It seems like he has some sort of cyst on his side and because I'm not sure if it's something contagious he's been in an isolation tank for a little while. The cyst doesn't overly seem to be bothering him, and I think because of the extra space they all have now, they're all growing. Not quite so tiny anymore, but still what the fish stores are selling as small. New fishtank will come with money which will come with a job, so one day. :)
Also thankyou to all for the support. Each new day is another foot infront of the other.
Tuesday, June 16, 2009
I'm a little teapot....
Not really, but I am going slowly but surely insane.
Just a note, odd bit of pee and poop discussion to follow. Good, bad, and ugly. :P
Am off work today. Came home early yesterday and Friday. Spent most of the weekend unable to do anything. Hips, knees, ankles, wrists, hands and fingers all in agony. To the point where it hurt to hold a book, and I was dropping things. Bah humbug. Today, not in quite as much agony, but fingers, wrists and hands still sore, and the cold that's been working it's way into my system decided to gate crash today. Trouble hearing, glands puffy, head on vacation..... Blergh.
Meanwhile, I'm being a whingy whiney brat. Because I damn well can. Yes, I'm feeling sorry for myself, because no 21 year old should have to deal with all this shite. And yes mum, I'm well aware that there are other people out there who are worse off than me. But also as I said to my mum, I don't give a rats about those people right now. Right now, I just want to indulge in a little bit of self pity, a little bit of woe is me, a little bit of "I feel like crap both physically and mentally and pardon me while I fall apart, can you pass me the superglue in a while?". One day, when I am feeling better, I'm sure I'll care about the rest of the world again.
Going to see the doc again this afternoon. Grumpy pants are on. He sent me to get blood tests done a few days ago, so I went on my way home from work on Friday. As you do, you pee before you leave, thinking you're only getting a jab in the arm. This is now the second time he's ordered me to pee in a jar and I've had to make yet another trip back in there while feeling like crap because he hasn't told me to hold it for the test. Blood test does not equal urine test. Urine test equals urine test. Blood test equals blood tests. I don't mind doing it, I would just appreciate knowing that I'm meant to be doing it so that I can hold it and thus pee on cue.
Apart from the whinging about his lack of telling me things I should know..... Will be talking to him about the pred while I'm there. I'm over it in a very big way. Yes, I do agree, it has most definitely helped quite dramatically. What used to result in me running and crapping liquid fire for half an hour, most often with blood and slime mixed in for artistic reasons (best reason I can think of, because there's nothing else logical.... Who would want a logical body?), now may just go "You need to find a loo yesterday" and then take some form of soft but solid, and rather rapid, escape from my butt.
So yeah, it's helped/helping, but at what cost? I've gained enough weight that my feet now live on my desk when I'm doing my shoes up. I can't bend far enough over to do them up without having great trouble breathing (as in can't breathe, end of story). Also, trouble wiping own butt because of weight. Managing, but difficult. Getting extremely puffed by things which shouldn't make me puffed (standing up for example). It doesn't help when kids turn around in their chairs and stare at you for a good thirty seconds then keep turning around to stare at you. Doesn't help when their parents don't bother to tell them that's rude either. The facial hair is bothering me a lot. It's to the point where I'm rather self conscious with it and I can't help but wonder if others can notice it too. There's the insomnia and complete and utter exhaustion too. I hate it. I'm dead to the world all day then when I go to bed, BAM! Wide awake. Over it. I'm fed up with the mood swings. Sure, others don't like it, but how the hell do they think I feel? I'm the one who can't control her emotions, and I'm also the one putting up with people screaming at me about it. Doesn't quite seem fair to deal with the problem, more problems to try and fix the problem, and people's (often bad) reactions to those problems. So yeah. Going to try and talk him into backing me off the pred. It's not nice, it's not pretty, and I've quite honestly had enough.
Hoping he'll send me to someone who can help with the joints. Wasn't able to drive on the weekend, and he won't give me painkillers that work (ie, tells me to take Panadiene [which isn't working] and gets cranky at me if I take Nurofen or Advil [only things that have any slight affect] because they're bad for Crohn's). Need something done. Can't drive, can't cook, can't knit... Hurts to brush my hair and teeth of a morning sometimes.
Tired of feeling like I'm letting people at work down too. I wasn't employed to sit at home in agony, I was employed to work, and I can't. Maybe I should just quit and let them hire someone who can do the job. Would be better for all involved I think.
Just a note, odd bit of pee and poop discussion to follow. Good, bad, and ugly. :P
Am off work today. Came home early yesterday and Friday. Spent most of the weekend unable to do anything. Hips, knees, ankles, wrists, hands and fingers all in agony. To the point where it hurt to hold a book, and I was dropping things. Bah humbug. Today, not in quite as much agony, but fingers, wrists and hands still sore, and the cold that's been working it's way into my system decided to gate crash today. Trouble hearing, glands puffy, head on vacation..... Blergh.
Meanwhile, I'm being a whingy whiney brat. Because I damn well can. Yes, I'm feeling sorry for myself, because no 21 year old should have to deal with all this shite. And yes mum, I'm well aware that there are other people out there who are worse off than me. But also as I said to my mum, I don't give a rats about those people right now. Right now, I just want to indulge in a little bit of self pity, a little bit of woe is me, a little bit of "I feel like crap both physically and mentally and pardon me while I fall apart, can you pass me the superglue in a while?". One day, when I am feeling better, I'm sure I'll care about the rest of the world again.
Going to see the doc again this afternoon. Grumpy pants are on. He sent me to get blood tests done a few days ago, so I went on my way home from work on Friday. As you do, you pee before you leave, thinking you're only getting a jab in the arm. This is now the second time he's ordered me to pee in a jar and I've had to make yet another trip back in there while feeling like crap because he hasn't told me to hold it for the test. Blood test does not equal urine test. Urine test equals urine test. Blood test equals blood tests. I don't mind doing it, I would just appreciate knowing that I'm meant to be doing it so that I can hold it and thus pee on cue.
Apart from the whinging about his lack of telling me things I should know..... Will be talking to him about the pred while I'm there. I'm over it in a very big way. Yes, I do agree, it has most definitely helped quite dramatically. What used to result in me running and crapping liquid fire for half an hour, most often with blood and slime mixed in for artistic reasons (best reason I can think of, because there's nothing else logical.... Who would want a logical body?), now may just go "You need to find a loo yesterday" and then take some form of soft but solid, and rather rapid, escape from my butt.
So yeah, it's helped/helping, but at what cost? I've gained enough weight that my feet now live on my desk when I'm doing my shoes up. I can't bend far enough over to do them up without having great trouble breathing (as in can't breathe, end of story). Also, trouble wiping own butt because of weight. Managing, but difficult. Getting extremely puffed by things which shouldn't make me puffed (standing up for example). It doesn't help when kids turn around in their chairs and stare at you for a good thirty seconds then keep turning around to stare at you. Doesn't help when their parents don't bother to tell them that's rude either. The facial hair is bothering me a lot. It's to the point where I'm rather self conscious with it and I can't help but wonder if others can notice it too. There's the insomnia and complete and utter exhaustion too. I hate it. I'm dead to the world all day then when I go to bed, BAM! Wide awake. Over it. I'm fed up with the mood swings. Sure, others don't like it, but how the hell do they think I feel? I'm the one who can't control her emotions, and I'm also the one putting up with people screaming at me about it. Doesn't quite seem fair to deal with the problem, more problems to try and fix the problem, and people's (often bad) reactions to those problems. So yeah. Going to try and talk him into backing me off the pred. It's not nice, it's not pretty, and I've quite honestly had enough.
Hoping he'll send me to someone who can help with the joints. Wasn't able to drive on the weekend, and he won't give me painkillers that work (ie, tells me to take Panadiene [which isn't working] and gets cranky at me if I take Nurofen or Advil [only things that have any slight affect] because they're bad for Crohn's). Need something done. Can't drive, can't cook, can't knit... Hurts to brush my hair and teeth of a morning sometimes.
Tired of feeling like I'm letting people at work down too. I wasn't employed to sit at home in agony, I was employed to work, and I can't. Maybe I should just quit and let them hire someone who can do the job. Would be better for all involved I think.
Thursday, May 14, 2009
Fishies!!!
Tired as all shite. Have a headache. Feel rather coldy. Actually, feel kinda like crap in general. Just want to dope myself up on pain killers then curl up and go to sleep in a warm, comfy bed.
Yesterday, went to get blood tests done. Find out that a/ I need to get a urine test done as well and b/ stupid doctor forgot to write "weekly" on the form, so had to chase that today. A new one will be mailed to me. Seriously though, considering the hole in the toilet seat that women get to pee through while sitting, how the hell do they expect us to aim it into that tiny little jar???? Somehow managed without peeing all over my hands, but still. Thanks ever so much for warning me doc.
Had Subway for lunch. Some of the guys were going there so asked them to grab me a meatball sub. I figure stuff it. My gut doesn't like me much the past few days anyway, so why should it matter what I eat? It's gonna be upset with me either way. While they were buying me food (really guys, thanks if you read this), I went shopping.
Despite there being no kitten in the bottom drawer of my desk, there are now three goldfish in a goldfish bowl sitting next to my computer. A black moore, a red cap faintail and a calico fantail. Leaning towards Othello as a name for the black moore, but the others are still unnamed. May think of something other than Othello too... The CEO's offering to make sushi with them. :S
Head hurts. *sadface here*
Also, Imuran increase this morning from 50mg to 100mg (1 tab to 2).
Hips and shoulders were hurting lots yesterday. Hips still a bit sore today. Hate having the shakes. Legs were shaking with it this morning. Hate it.
Eyes still blurred/blurring. Trouble focusing/pain occurring while focusing. Also have raccoon eyes from being tired. Not a good look.
Yesterday, went to get blood tests done. Find out that a/ I need to get a urine test done as well and b/ stupid doctor forgot to write "weekly" on the form, so had to chase that today. A new one will be mailed to me. Seriously though, considering the hole in the toilet seat that women get to pee through while sitting, how the hell do they expect us to aim it into that tiny little jar???? Somehow managed without peeing all over my hands, but still. Thanks ever so much for warning me doc.
Had Subway for lunch. Some of the guys were going there so asked them to grab me a meatball sub. I figure stuff it. My gut doesn't like me much the past few days anyway, so why should it matter what I eat? It's gonna be upset with me either way. While they were buying me food (really guys, thanks if you read this), I went shopping.
Despite there being no kitten in the bottom drawer of my desk, there are now three goldfish in a goldfish bowl sitting next to my computer. A black moore, a red cap faintail and a calico fantail. Leaning towards Othello as a name for the black moore, but the others are still unnamed. May think of something other than Othello too... The CEO's offering to make sushi with them. :S
Head hurts. *sadface here*
Also, Imuran increase this morning from 50mg to 100mg (1 tab to 2).
Hips and shoulders were hurting lots yesterday. Hips still a bit sore today. Hate having the shakes. Legs were shaking with it this morning. Hate it.
Eyes still blurred/blurring. Trouble focusing/pain occurring while focusing. Also have raccoon eyes from being tired. Not a good look.
Wednesday, May 6, 2009
I swear, doctors are evil. Evil I tell you!
Went home early from work yesterday. Just couldn't cope. In pain, shaking, temperature changes, tired, head in a mess. Not conductive for the work environment.
Mum went with me to see the evil doctor person. Which was good in a way because everything absorbed while I was in there then vacated my head afterwards. Bad in another way because the doc talked to her, not me. Get to see him again in four weeks.
So. The good news is I don't have to have the enemas any more. This came about from me going "Pretty please, a thousand times, with a cherry and sugar on top, can I please not have the enemas anymore?". And yes I did use those words. It was that or demand it and I thought maybe a cherry would be nicer than demanding. Also, my inflamation markers were back down to well within normal range or nearly normal (instead of waaaaaaaaay up high in the sky).
The annoying news is that he batted every single side effect (or at least what has been happening to me since I started the meds) down with either a "Yeah, that happens with Prednisone" or a "That's not related to your meds" then promptly ignoring it. The chest pain? Not related to my meds so doesn't bother him. Still bothers me.
The bad news (at least in my eyes). I get to stay on the Prednisone, same amount, no backing me off. And I get to stay on the Salofalk (not such a biggy, but really, I'm not sure what it's doing for me). And he's starting me on Imuran. Mum's getting the script filled for me today. I get to have weekly blood tests with this one, so I'm guessing I need to harden up and get over that fear of needles just a little bit. If the Presnisone and Imuran don't work, I get to look at a fortnightly injection of something (think it's Humira, could be something else though). My iron is still low (though still not anaemic, so that's good) and he was going to put me on iron tablets too, but didn't want me starting two new meds at the same time.
In other fantastic news, the joint pain is apparently not caused by the meds, infact the meds should make it better. Ignore that fact that most of it started after I started taking the meds. So it sounds like I've got the delightful arthritis that comes with Crohn's. I'm also the heaviest I've ever been, despite 5 weeks ago being the lightest I'd been in two years. And! The blurry vision? Someone forgot to mention to me that if you're predisposed to diabetes then Prednisone can start the ball rolling. Blurry vision can be a sign of diabetes. So guess who gets to have her sugars checked? As if one incurable chronic disease wasn't enough.
Slept a little better than usual last night, although woke up about quarter to six to a massive painful cramp in my left leg. So it's still aching from that, and currently my right one feels like it's going to go. I'm tired, and my vision is having fun with me, and my fingers hurt.
In relation to the weight gain, it's a problem. Double chin is now very noticeable (if it wasn't before). Work clothes are also an issue. See, the shirts I wear are the presentable office type ones, with the buttons down the front. Noticed after I got to work today that the shirt I'm wearing today in particular, decides to open between the buttons. Not a good look. So I now face the prospect of going and trying to find shirts that fit and look decent. Sadly, the style and brand I wear now, I know looks alright when I'm five kilos lighter, but sadly it's the biggest size in that style and brand. So I've got the horrible task (and yes it's horrible, I despise it with a passion) of hunting for a whole new work wardrobe. Yuck. Time wasting, expensive, stressful, pointless exercise. Hate.
Room needs doing. Cleaning, rearranging, etc. Too small. Need space. Unfortunately, the only other room in the house that is a possibility isn't a possibility, it's a glorified walk way. So I get to either clean the room, rent, or save and buy. For now, cleaning the room out sounds better. And cheaper. Bah. It's still a teeny room.
Anyway. Off to try and muddle my way through the day. Blergh.
Mum went with me to see the evil doctor person. Which was good in a way because everything absorbed while I was in there then vacated my head afterwards. Bad in another way because the doc talked to her, not me. Get to see him again in four weeks.
So. The good news is I don't have to have the enemas any more. This came about from me going "Pretty please, a thousand times, with a cherry and sugar on top, can I please not have the enemas anymore?". And yes I did use those words. It was that or demand it and I thought maybe a cherry would be nicer than demanding. Also, my inflamation markers were back down to well within normal range or nearly normal (instead of waaaaaaaaay up high in the sky).
The annoying news is that he batted every single side effect (or at least what has been happening to me since I started the meds) down with either a "Yeah, that happens with Prednisone" or a "That's not related to your meds" then promptly ignoring it. The chest pain? Not related to my meds so doesn't bother him. Still bothers me.
The bad news (at least in my eyes). I get to stay on the Prednisone, same amount, no backing me off. And I get to stay on the Salofalk (not such a biggy, but really, I'm not sure what it's doing for me). And he's starting me on Imuran. Mum's getting the script filled for me today. I get to have weekly blood tests with this one, so I'm guessing I need to harden up and get over that fear of needles just a little bit. If the Presnisone and Imuran don't work, I get to look at a fortnightly injection of something (think it's Humira, could be something else though). My iron is still low (though still not anaemic, so that's good) and he was going to put me on iron tablets too, but didn't want me starting two new meds at the same time.
In other fantastic news, the joint pain is apparently not caused by the meds, infact the meds should make it better. Ignore that fact that most of it started after I started taking the meds. So it sounds like I've got the delightful arthritis that comes with Crohn's. I'm also the heaviest I've ever been, despite 5 weeks ago being the lightest I'd been in two years. And! The blurry vision? Someone forgot to mention to me that if you're predisposed to diabetes then Prednisone can start the ball rolling. Blurry vision can be a sign of diabetes. So guess who gets to have her sugars checked? As if one incurable chronic disease wasn't enough.
Slept a little better than usual last night, although woke up about quarter to six to a massive painful cramp in my left leg. So it's still aching from that, and currently my right one feels like it's going to go. I'm tired, and my vision is having fun with me, and my fingers hurt.
In relation to the weight gain, it's a problem. Double chin is now very noticeable (if it wasn't before). Work clothes are also an issue. See, the shirts I wear are the presentable office type ones, with the buttons down the front. Noticed after I got to work today that the shirt I'm wearing today in particular, decides to open between the buttons. Not a good look. So I now face the prospect of going and trying to find shirts that fit and look decent. Sadly, the style and brand I wear now, I know looks alright when I'm five kilos lighter, but sadly it's the biggest size in that style and brand. So I've got the horrible task (and yes it's horrible, I despise it with a passion) of hunting for a whole new work wardrobe. Yuck. Time wasting, expensive, stressful, pointless exercise. Hate.
Room needs doing. Cleaning, rearranging, etc. Too small. Need space. Unfortunately, the only other room in the house that is a possibility isn't a possibility, it's a glorified walk way. So I get to either clean the room, rent, or save and buy. For now, cleaning the room out sounds better. And cheaper. Bah. It's still a teeny room.
Anyway. Off to try and muddle my way through the day. Blergh.
Wednesday, April 29, 2009
Tired, cold induced blather.
Urgh. I am coldy/fluey at the moment. Achey, sniffly, head feels like a bunch of wet soggy newspaper glued to the inside of my skull.... The first person who says it's swine flu will be shot. Seriously, that's all I'm reading in the news at the moment. "Blah, blah, blah, swine flu, blah blah, swine flu, blah oh look swine flu". It'll go away. Just like the bird flu did. Besides, what I have is more likely a cold than the flu. *defensiveness over and out*
Joint pain still bugging me, particularly in my fingers, wrists and knees. Also, the pain I get in my jaw is starting to worry me a bit. It happens after eating a normal size meal (small bits and pieces are okay), or when I have something warm then something cold (ie, hot food followed by a mouthful of drink). Rather painful and tight and very uncomfortable and I'm not entirely sure that I'm meant to be experiencing it.
My parents must be magic. No, really. We had pizza last night for dinner, just after I had been musing over how it would go (okay, so it was a day or two later, but hey. Magic sounds better). Eagle Boys pizza gets a big thumbs up!!! I can eat pizza! Whoo!! Just not pub pizza at the local. *sad face goes here* But I can eat pizza!
Sleep is being interupted. I don't quite know which is more annoying, the waking up and staying awake for hours on end, or the waking up every hour or two throughout the night like I have been lately. Possibly that, because at least if I'm awake for a few hours I get deep sleep either side of it and I can do stuff during the time I'm awake. Waking up regularly is sucky because there's no deep sleep and nothing gets done.
My eyes are bothering me. Still just the general blurry/hard to focus crap. It's not made much better by eight hours in front of a computer every day. My computer at home doesn't get turned on during the week anymore. Poor thing. I just don't have a need for it at the moment. By the end of the day my eyes hate me.
Coherency is also still out the window somewhat. Typing gets redone, backspaced, deleted. Talking comes out half gibberish half the time. Sometimes I just shouldn't talk. Sometimes I can't. That's fun. And others I can't think of simple words, like desk and chair and window. They get replaced with "thing" and pointed to.
Off to get blood tests again this afternoon. I get to see the meany person next Tuesday after work and he wants blood tests done. Hate needles. Hate doctors. Hate afternoon traffic. Grrr....
On the upside, I have less than a week before I tell the doctor that either he takes me off the enemas or I take myself off them. I've had enough of them, I really have. They're time consuming, always uncomfortable, often painful, sometimes to the point of wiping out all messages my brain is trying to send to my body, and quite honestly, I'm fed up of having things shoved the wrong way up my butt. Not. Happy. Jan.
I'm to the point now where I tend to end up laughing a bit, because otherwise I'll cry. And I don't even try to stop my brain coming out with silly things. Like this morning, when my first thought upon entering the bathroom was, "Let's see what the Pimple Fairy left for us today". I tend to be a bit more sensible than that, but no. Sensible? Out the window! Clearly, my brain recognises that I need amusement above anything else, particularly at that hour of the morning.
Poo is back to it's usual self (by usual, I mean that which it has been more often than not in the past couple of weeks). No slime (thank the Gods!), no blood. Maybe it was just a one off, catch up/retaliation for the MacDonalds? Hoping so. And yes readers, I will proceed to talk occasionally about poo, farts and all things gross involving the gut and the butt. Have fun reading!
No kitten. I'm sure I'll eventually get tired of looking. In a year or two. :P
Joint pain still bugging me, particularly in my fingers, wrists and knees. Also, the pain I get in my jaw is starting to worry me a bit. It happens after eating a normal size meal (small bits and pieces are okay), or when I have something warm then something cold (ie, hot food followed by a mouthful of drink). Rather painful and tight and very uncomfortable and I'm not entirely sure that I'm meant to be experiencing it.
My parents must be magic. No, really. We had pizza last night for dinner, just after I had been musing over how it would go (okay, so it was a day or two later, but hey. Magic sounds better). Eagle Boys pizza gets a big thumbs up!!! I can eat pizza! Whoo!! Just not pub pizza at the local. *sad face goes here* But I can eat pizza!
Sleep is being interupted. I don't quite know which is more annoying, the waking up and staying awake for hours on end, or the waking up every hour or two throughout the night like I have been lately. Possibly that, because at least if I'm awake for a few hours I get deep sleep either side of it and I can do stuff during the time I'm awake. Waking up regularly is sucky because there's no deep sleep and nothing gets done.
My eyes are bothering me. Still just the general blurry/hard to focus crap. It's not made much better by eight hours in front of a computer every day. My computer at home doesn't get turned on during the week anymore. Poor thing. I just don't have a need for it at the moment. By the end of the day my eyes hate me.
Coherency is also still out the window somewhat. Typing gets redone, backspaced, deleted. Talking comes out half gibberish half the time. Sometimes I just shouldn't talk. Sometimes I can't. That's fun. And others I can't think of simple words, like desk and chair and window. They get replaced with "thing" and pointed to.
Off to get blood tests again this afternoon. I get to see the meany person next Tuesday after work and he wants blood tests done. Hate needles. Hate doctors. Hate afternoon traffic. Grrr....
On the upside, I have less than a week before I tell the doctor that either he takes me off the enemas or I take myself off them. I've had enough of them, I really have. They're time consuming, always uncomfortable, often painful, sometimes to the point of wiping out all messages my brain is trying to send to my body, and quite honestly, I'm fed up of having things shoved the wrong way up my butt. Not. Happy. Jan.
I'm to the point now where I tend to end up laughing a bit, because otherwise I'll cry. And I don't even try to stop my brain coming out with silly things. Like this morning, when my first thought upon entering the bathroom was, "Let's see what the Pimple Fairy left for us today". I tend to be a bit more sensible than that, but no. Sensible? Out the window! Clearly, my brain recognises that I need amusement above anything else, particularly at that hour of the morning.
Poo is back to it's usual self (by usual, I mean that which it has been more often than not in the past couple of weeks). No slime (thank the Gods!), no blood. Maybe it was just a one off, catch up/retaliation for the MacDonalds? Hoping so. And yes readers, I will proceed to talk occasionally about poo, farts and all things gross involving the gut and the butt. Have fun reading!
No kitten. I'm sure I'll eventually get tired of looking. In a year or two. :P
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