So the right side of my jaw is still aching from yesterday lunch time. I've also worked out it's right up the top bit near the eye/temple that's the worst bit when it hurts. I'm guessing either the muscle or tendon has gotten too tight? Eh. Will talk to the doc on Tuesday.
Went for my blood tests yesterday. No one was there so I got straight in. Guy who did it was pretty good too. I hate needles. Seriously, I'm normally a cry baby when it comes to them. Once it's in my arm I'm fine, I can sit there and watch the blood come out (hey, it's kinda cool to see it gush and bubble and stuff. Yes I'm strange, I don't deny this.) but I just can't stand the initial needle. Guy who did it yesterday though did it so I didn't even notice. For real! I looked away and looked back a moment later and the first vial was half full and I'm left sitting there for a moment thinking "How the heck did that happen?". Stung the teensiest bit when he took the needle out, but otherwise I've gotta say that's the first needle that hasn't bothered me. Yay! Steps in a good direction.
Sleep is an issue. I'm seriously getting pissed off with not sleeping properly. You could set your watch by when I wake up during the night and it's just getting ridiculous. All the other random pain and crap is bugging me too, but I think the interupted/lack of sleep is the worst bit. I love my sleep, perhaps just a little too much, and the bitch comes out to play when I don't get the sleep I want.
...Think that's all I had to whinge about today. And feel ever so slightly better for having done so.
No kitten.
Thursday, April 30, 2009
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
Tuesday, April 28, 2009
Bleh. Yay for creative blog titles!
*whingey whiney whimpering goes here*
So the slime came back last night. Yucky stuff. I thought things must've been getting better, but obviously not as good as I thought.
Also, ewyuckyyegodsstretchmarksofdoom! I don't often see myself in a mirror, apart from my face or when I'm fully clothed, so it kinda threw me a bit last night when I did catch myself and see the ew yuckies that I know weren't there that long ago. Weight has been creeping on, just not sure how much. The scales are hiding at home, which is probably a good thing. I think if I stepped on them I'd get cranky with them.
Pain yesterday. Fingers, wrist (although both of those not hugely bad), back, hips, knees...... Basically anything I needed to function properly. Advil is my friend.
I'm also beginning to realise that I quite possibly sound like a junkie. Advil, Imodium..... Friends! Whoo! Ahem. Note, I only take them when I need them. In the meantime I whinge and whinge like a little brat and piss everyone in the immediate vicinity off until I finally get yelled at to do something about it.
So far, corn chips and salsa appears to be going okay. Maybe. I hope! It's tasty.
Slept well last night. Was cold enough that I went hunting for the doona before I went to bed, so curled up under that and a blanket and was happy. Though, cold mornings and a warm bed and not so good for getting up and getting ready for work. So the shower was hot and the heater went on as soon as I got to work.
No kitten. *sad face goes here* Though the corn chips and salsa are still living there. :)
So the slime came back last night. Yucky stuff. I thought things must've been getting better, but obviously not as good as I thought.
Also, ewyuckyyegodsstretchmarksofdoom! I don't often see myself in a mirror, apart from my face or when I'm fully clothed, so it kinda threw me a bit last night when I did catch myself and see the ew yuckies that I know weren't there that long ago. Weight has been creeping on, just not sure how much. The scales are hiding at home, which is probably a good thing. I think if I stepped on them I'd get cranky with them.
Pain yesterday. Fingers, wrist (although both of those not hugely bad), back, hips, knees...... Basically anything I needed to function properly. Advil is my friend.
I'm also beginning to realise that I quite possibly sound like a junkie. Advil, Imodium..... Friends! Whoo! Ahem. Note, I only take them when I need them. In the meantime I whinge and whinge like a little brat and piss everyone in the immediate vicinity off until I finally get yelled at to do something about it.
So far, corn chips and salsa appears to be going okay. Maybe. I hope! It's tasty.
Slept well last night. Was cold enough that I went hunting for the doona before I went to bed, so curled up under that and a blanket and was happy. Though, cold mornings and a warm bed and not so good for getting up and getting ready for work. So the shower was hot and the heater went on as soon as I got to work.
No kitten. *sad face goes here* Though the corn chips and salsa are still living there. :)
Monday, April 27, 2009
Lovely sleep.
Hmmm.... Soooooo. Where am I up to, what am I doing?
Sleep has happened a few times. Beautiful, comfy, curled up under the blankets sleep. Other times it hasn't. Those times I've been dead to the world during the day then pinging off the walls just before I go to bed. I have (re)discovered that a glass of white wine is a beautiful thing in the hour or two before hitting the sack. Lovely sleepiness that results in sleep.
I have also discovered that MacDonalds is a major source of pain. Was attempting to be out and about on Saturday and then had it for lunch before going to another store. Was wandering around in the store and ended up in enough pain that it took quite a bit of effort not to drop everything I had, curl up on the floor and cry. Pain would come and go, and then when I went to get in the car I had quite a deal of trouble getting myself in (so clearly curling up on the floor would not have helped). Managed, and managed to get home. Pain died down a bit on the way home, and had eased significantly by the time I became enema bound. And then it came back. Big and bad. To the point where the "do not poop" messages didn't get out of my brain in time. Pain rating somewhere around a 15 out of 10. Barely made the bathroom, diarrhoea, pain, hurt, Imodium (is God!). Cried. Cried some more. Hate for it all.
So. The old hag in my intestines has effectively put a stop to my normal fast food habits.
Red Rooster: Straight through.
Hungry Jacks: Chest pain.
MacDonalds: Extreme abdominal pain, diarrhoea.
KFC: Hate KFC.
Subway*: Straight through
*The only thing I get from Subway for lunch or dinner is the meatball sub, and it doesn't like me. Bacon and egg thinger is still heaven.
Still not quite sure how the run of the mill pizza goes (Dominos, Eagle Boys, etc), and must see how the local fish and chip place goes. I'll be saddened somewhat if I can't have fish and chips.
Rum goes nicely to fix things. Just a glass. I normally have normal Bundaberg, but I'd bought Bundaberg Red 'cause it was on sale and I thought it was OP as opposed to UP. Isn't OP, but is filtered through Australian Red Gum. Tastes a bit nicer than normal Bundy. Happy face got put on afterwards. Goes okay with the old hag. Coke it was mixed with surprisingly went alright. Maybe it's just the amount I'd been drinking that was bothering me. Coke, that is.
Also ended up with another Kimmi Doll over the weekend. Miyuki, peaceful. Very good to focus on in family arguements or when nearly wiped out by idiot drivers in morning rush hour.
Was wanting to make a quiche type thing over the weekend too, just ran out of time. Am plotting for next weekend. Possible thoughts for fillings include:
- Chicken, bacon, onion, mushroom and cheese
- Chorizo, onion, chilli, cheese, and maybe avocado
- Prawn, garlic, onion, capsicum
I'm sure I had more written down last night, but the heater's on at work, so I'm comfy and falling asleep. Making my brain work now huh? Also am trying the whole eating healthier thing again that I gave up a while ago. I'm sure I've got more bits that wobble, or am at least wobbling more, than I ever have before. Don't like the feeling of it, don't like looking at it.
Also. Did not clean bomb zone of room, and did not go for delightful drive. Postponed both till Gods know when.
No kitten. There are however corn chips and salsa. These are good things. Will comment on them and their effect on the old hag later.
Sleep has happened a few times. Beautiful, comfy, curled up under the blankets sleep. Other times it hasn't. Those times I've been dead to the world during the day then pinging off the walls just before I go to bed. I have (re)discovered that a glass of white wine is a beautiful thing in the hour or two before hitting the sack. Lovely sleepiness that results in sleep.
I have also discovered that MacDonalds is a major source of pain. Was attempting to be out and about on Saturday and then had it for lunch before going to another store. Was wandering around in the store and ended up in enough pain that it took quite a bit of effort not to drop everything I had, curl up on the floor and cry. Pain would come and go, and then when I went to get in the car I had quite a deal of trouble getting myself in (so clearly curling up on the floor would not have helped). Managed, and managed to get home. Pain died down a bit on the way home, and had eased significantly by the time I became enema bound. And then it came back. Big and bad. To the point where the "do not poop" messages didn't get out of my brain in time. Pain rating somewhere around a 15 out of 10. Barely made the bathroom, diarrhoea, pain, hurt, Imodium (is God!). Cried. Cried some more. Hate for it all.
So. The old hag in my intestines has effectively put a stop to my normal fast food habits.
Red Rooster: Straight through.
Hungry Jacks: Chest pain.
MacDonalds: Extreme abdominal pain, diarrhoea.
KFC: Hate KFC.
Subway*: Straight through
*The only thing I get from Subway for lunch or dinner is the meatball sub, and it doesn't like me. Bacon and egg thinger is still heaven.
Still not quite sure how the run of the mill pizza goes (Dominos, Eagle Boys, etc), and must see how the local fish and chip place goes. I'll be saddened somewhat if I can't have fish and chips.
Rum goes nicely to fix things. Just a glass. I normally have normal Bundaberg, but I'd bought Bundaberg Red 'cause it was on sale and I thought it was OP as opposed to UP. Isn't OP, but is filtered through Australian Red Gum. Tastes a bit nicer than normal Bundy. Happy face got put on afterwards. Goes okay with the old hag. Coke it was mixed with surprisingly went alright. Maybe it's just the amount I'd been drinking that was bothering me. Coke, that is.
Also ended up with another Kimmi Doll over the weekend. Miyuki, peaceful. Very good to focus on in family arguements or when nearly wiped out by idiot drivers in morning rush hour.
Was wanting to make a quiche type thing over the weekend too, just ran out of time. Am plotting for next weekend. Possible thoughts for fillings include:
- Chicken, bacon, onion, mushroom and cheese
- Chorizo, onion, chilli, cheese, and maybe avocado
- Prawn, garlic, onion, capsicum
I'm sure I had more written down last night, but the heater's on at work, so I'm comfy and falling asleep. Making my brain work now huh? Also am trying the whole eating healthier thing again that I gave up a while ago. I'm sure I've got more bits that wobble, or am at least wobbling more, than I ever have before. Don't like the feeling of it, don't like looking at it.
Also. Did not clean bomb zone of room, and did not go for delightful drive. Postponed both till Gods know when.
No kitten. There are however corn chips and salsa. These are good things. Will comment on them and their effect on the old hag later.
Wednesday, April 22, 2009
Just another blog update...
So. I can add potato, cabbage, carrott, sausages and oats to the safe foods list. Have eaten said things almost continually over the past week (bar the sausages, but they do seem to go okay) and have had very few upsets that I haven't been able to pinpoint on to other things. Have/will create a few new tags today along the lines of "safe foods" and "not safe foods" so that it's a bit easier to find either (as opposed to both just being tagged with "food"). Oats are surprising me. I used to eat them a bit, but then summer would rock around and I either wouldn't eat brekkie or I'd want something lighter. Now that it's cooling down, I was actually wanting something warm to kickstart my day but was hesitant to try the oats again. Dad bought them for me though when he did the shopping, and I figured my gut isn't exactly listening to what I'm reading re safe/not safe foods, so I tried them and they go okay. Yay! More stuff I can eat!
On the downside, I think I worked out what caused that rather horrid pain the other week. See, I'd had Hungry Jack's for lunch (and it doesn't make me run, which is great), and I had it again yesterday for lunch, and although it wasn't the extreme agony this time, I ended up in a little bit of discomfort. So sadly, I think I may need to end my love affair with sleazy greasy Hungry Jacks. Also slightly suspicious of Coke (there goes my mixed rum and scotch drinks...) and potato chips (Smiths, Pringles, etc). While they don't cause the diarrhoea of doom, it's often after one or both of the above that I'm a little uncomfortable and stuff doesn't sit quite as right as it should. *sad face goes here*
Got the enema script refilled yesterday. Well, had dropped it off the day before and mum picked them up yesterday for me. She'd also been to the shop I get my yarns and stuff from because there were five balls of cotton/yarn in there for me that I use for some of my crochet stuff. Colours I didn't have either, so that was sweet of her.
No kitten. :(
On the downside, I think I worked out what caused that rather horrid pain the other week. See, I'd had Hungry Jack's for lunch (and it doesn't make me run, which is great), and I had it again yesterday for lunch, and although it wasn't the extreme agony this time, I ended up in a little bit of discomfort. So sadly, I think I may need to end my love affair with sleazy greasy Hungry Jacks. Also slightly suspicious of Coke (there goes my mixed rum and scotch drinks...) and potato chips (Smiths, Pringles, etc). While they don't cause the diarrhoea of doom, it's often after one or both of the above that I'm a little uncomfortable and stuff doesn't sit quite as right as it should. *sad face goes here*
Got the enema script refilled yesterday. Well, had dropped it off the day before and mum picked them up yesterday for me. She'd also been to the shop I get my yarns and stuff from because there were five balls of cotton/yarn in there for me that I use for some of my crochet stuff. Colours I didn't have either, so that was sweet of her.
No kitten. :(
Tuesday, April 21, 2009
And now for some random pointless blather.
Hmm.... I need to work on controlling my cranky. Got rather irate yesterday at work when someone had screwed us around and then threw it back on us. Sure, the situation deserved ittitation, but not the whole bucket of hellish angry I threw at it. And sure, the chemist gave somebody else meds with my label on it so they've got my name, meds, dosage and doctor info, but it riled me a heck load more than it should have, or would have prior to the meds. It's annoying my family, and it's upsetting me. I'm not that person. I won't be that person. Sure, I get a little tetchy, but I don't get huge-o cranky on things that don't need it. Also need to reign my language in a little, I've noticed I'm becoming more and more like a trooper. Mind, I don't think I can quite put that down to the meds.
Apparently with the poohs comes complimentary corn. You know how you puke, and there's always carrot in it, whether you've eaten it recently or not? Well I think corn comes complimentary with poop. 'Cause seriously, I haven't had corn in quite a few weeks, yet apparently it gets to make an appearance. It did kinda crack me up a bit last night, trying to figure out if I had indeed eaten corn recently...
Have been in denial, and maybe it's been working because it's clearing up, but my chin (at least the first one) is covered in yucky red sores. Sore and big. Dratted pimples.
The second chin, like the rest of me, I'm noticing ballooning. Seriously, it's like watching plants growing in slow motion on those David Attenborough docos, except it's fat and it's on me, not plants in the ground. It's quite disgusting actually. I noticed the chin thing moreso last night when I caught my reflection in my ds screen. Two chins and no neck. Yuck. So out came the weights. Light ones for attempting the boxing routines from the wii, and slightly heavier ones for curls. Haven't exercised in a while, so I figured I'll start out small and maybe try and work my way back into the 45 to 60 minute work out I had going before. Mind, I think that degree of exercise only lasted a week or so. Things distracted me (like blank pieces of paper)!
Am thinking I will try and find time in the day for some meditation. It could well help with a whole load of stuff I am thinking.
Stomach wise, things are..... not liquid fire. I think that's the safest way to put things. Still getting the regular aches and pains, though not as massive as before. Have realised though when I've stopped to think about it, that there's been a niggle of a pain in the bottom right of my abdomen for quite some years (at least seven or eight, if not quite a bit longer), that now I put down to the Crohn's, whereas before it was just a random niggle. At least now I've got some sort of explanation for that. Subtle indication that something was wrong, but I just got used to it. Besides, apart from the psoraisis there was no other indication until last year.
Depending on my energy levels (and less so the weather) this weekend I'm going to treat myself. I'm planning a drive up where I grew up. It's about 2 or 3 hours away from where I live now, but it's still heaven on earth for me. Wide, empty roads, fresh air, trees, cattle, sheep, horses, small country towns, emptiness. Bliss. I think I need it. I've been meaning to go there since Christmas last year, but keep putting it off, either the weather gets in my way (I take the camera), or I'm tired, or I'm sick, or I've got other stuff I want to do, or stuff I have to do, or I don't have the money for fuel.... This week I'm aiming to get enough sleep, and to eat things that won't go straight through me, and then hopefully this weekend I'll be able to get in my little red car and go. That'll make me happy.
My room also needs a drastic change, ie make the mess huger than it already is (and yes, I use the word huger), then put it all back in different places. A change is as good as a holiday supposedly, so I'll guessing if I sort everything out then it'll all make me feel relaxed and peaceful and better.
And there's still no kitten in my drawer.
Apparently with the poohs comes complimentary corn. You know how you puke, and there's always carrot in it, whether you've eaten it recently or not? Well I think corn comes complimentary with poop. 'Cause seriously, I haven't had corn in quite a few weeks, yet apparently it gets to make an appearance. It did kinda crack me up a bit last night, trying to figure out if I had indeed eaten corn recently...
Have been in denial, and maybe it's been working because it's clearing up, but my chin (at least the first one) is covered in yucky red sores. Sore and big. Dratted pimples.
The second chin, like the rest of me, I'm noticing ballooning. Seriously, it's like watching plants growing in slow motion on those David Attenborough docos, except it's fat and it's on me, not plants in the ground. It's quite disgusting actually. I noticed the chin thing moreso last night when I caught my reflection in my ds screen. Two chins and no neck. Yuck. So out came the weights. Light ones for attempting the boxing routines from the wii, and slightly heavier ones for curls. Haven't exercised in a while, so I figured I'll start out small and maybe try and work my way back into the 45 to 60 minute work out I had going before. Mind, I think that degree of exercise only lasted a week or so. Things distracted me (like blank pieces of paper)!
Am thinking I will try and find time in the day for some meditation. It could well help with a whole load of stuff I am thinking.
Stomach wise, things are..... not liquid fire. I think that's the safest way to put things. Still getting the regular aches and pains, though not as massive as before. Have realised though when I've stopped to think about it, that there's been a niggle of a pain in the bottom right of my abdomen for quite some years (at least seven or eight, if not quite a bit longer), that now I put down to the Crohn's, whereas before it was just a random niggle. At least now I've got some sort of explanation for that. Subtle indication that something was wrong, but I just got used to it. Besides, apart from the psoraisis there was no other indication until last year.
Depending on my energy levels (and less so the weather) this weekend I'm going to treat myself. I'm planning a drive up where I grew up. It's about 2 or 3 hours away from where I live now, but it's still heaven on earth for me. Wide, empty roads, fresh air, trees, cattle, sheep, horses, small country towns, emptiness. Bliss. I think I need it. I've been meaning to go there since Christmas last year, but keep putting it off, either the weather gets in my way (I take the camera), or I'm tired, or I'm sick, or I've got other stuff I want to do, or stuff I have to do, or I don't have the money for fuel.... This week I'm aiming to get enough sleep, and to eat things that won't go straight through me, and then hopefully this weekend I'll be able to get in my little red car and go. That'll make me happy.
My room also needs a drastic change, ie make the mess huger than it already is (and yes, I use the word huger), then put it all back in different places. A change is as good as a holiday supposedly, so I'll guessing if I sort everything out then it'll all make me feel relaxed and peaceful and better.
And there's still no kitten in my drawer.
Monday, April 20, 2009
Expensive!
After having just done a quick budget, I've come to realise that my new medical expenses (ie, prescription meds and doctors visits alone) are costing me an extra $30 to $40 a week. That's an extra $2k per year. Not to mention the Imodium (which is setting me back $10 to $15 per week), and the Advil for the pain (okay, only about $5 a week, but that adds up!). So really, when I look at that, it's jumped to a possible $60 per week. Just because of the old hag in my gut. That's over $3k a year, or over a 10 year period, a decent sized house deposit.
Add to that extra food because the meds make me stark raving mad if I don't eat more to shut them up, stuff to clear my face up, again because of the meds I'm paying for, and the meds that the doctor is yet to prescribe.
Then factor in the cost of discomfort, humiliation, embarassment. And the time! Time spent chasing doctors and chemists. Time spent in pain. Time spent upset or angry. Time spent enema bound. Time spent getting tests done, running to and from tests and appointments. Time spent apologising to work for having to take the whole day off for tests, despite having no sick leave saved up yet.
And the inconvenience to others too! I'm sure my mother has better things to do with her time than stick enemas up my butt and run me to and from tests when the doctor says I can't drive. Time that (thankfully) work pays me for despite me not being there.
No body bothered to mention all the damn expenses involved with this. This just isn't fair!
Add to that extra food because the meds make me stark raving mad if I don't eat more to shut them up, stuff to clear my face up, again because of the meds I'm paying for, and the meds that the doctor is yet to prescribe.
Then factor in the cost of discomfort, humiliation, embarassment. And the time! Time spent chasing doctors and chemists. Time spent in pain. Time spent upset or angry. Time spent enema bound. Time spent getting tests done, running to and from tests and appointments. Time spent apologising to work for having to take the whole day off for tests, despite having no sick leave saved up yet.
And the inconvenience to others too! I'm sure my mother has better things to do with her time than stick enemas up my butt and run me to and from tests when the doctor says I can't drive. Time that (thankfully) work pays me for despite me not being there.
No body bothered to mention all the damn expenses involved with this. This just isn't fair!
Pizza = liquid fire.
I meant to post over the weekend, just by the time I had a few minutes I really wasn't in a good head space.
Friday night was sleepy time. Seriously, 12 hours of beautiful sleep. I loved every minute of it. Yeah sure, woke up a few times, but it was the simple roll over and go back to sleep moments, not the ah Gods the pain! moments. They seem to be fading. Maybe it was just my body getting used to the meds. I hope!
Saturday wasn't feeling too brilliant, just a coldy thing still, but decided I was shopping. Damnit, I need something to keep my sanity. It resulted in a few new bits of yarn, a new mug (which says "If I knit fast enough does it count as exercise?"), a recipe book for Crohn's, Colitis, Celiac (can't spell it, but hey), and IBS. Some nice looking recipes in there, but it's all based on the Specific Carbohydrate Diet, and most of what I've heard says to take that one with a rather large grain of salt. That, and I can't stand any diet that says I can't have potato. :) Also ended up with another Kimmi Doll, Kaori. Strength. She's one of the ones I've been looking for, so I was quite stoked to find her. Was also informed while I was there by the guy behind the counter that new ones are hitting the store this week, which is awesome because I believe a few of the ones I haven't been able to find are because they're new. I know it can be viewed as wasted money, but it's just something to keep my head up. While it's easy to say to yourself to be strong, and to have faith and belief in yourself, it's a lot harder to actually maintain this, particularly when you're curled up crying on the floor. But having a physical representation of these things kinda helps because you see it through the tears and you stop for a sec to think on it, and that sec turns into a minute and that minute keeps going and it reminds you of what you need to do. At least that's how it works for me, so I view it as a worthwhile waste of money. :)
Saturday night my parents, brother and I went to one of our locals for dinner in celebration of my brother's birthday. They do amazing pizza there, so we got a supreme, meat lovers, and a bbq chicken one to split between the four of us, along with garlic bread. My gods they were delicious, particularly the chicken one. Bbq sauce, chicken, sweet chilli sauce, sour cream.... I think there may have been mushroom on it too. Enjoyed it, and even managed to sit back a few minutes to fully appreciate a good meal. And then the old hag came to play. Spent the next twenty to thirty minutes in the ladies at the local shitting liquid fire. On the up side, I did discover that there were thirty one visable screws on the inside of the cubical door, five different sorts/sizes. To make it even sadder, I could name the different types of screws, and could recognise that they were most likely stainless steel. Drove everyone home, took imodium, and curled up and cried for a little while until The Bill started and made everything slightly better.
Saturday night was hell. Didn't get to sleep until after 11, then the insomniac came out to party at about 2:30 and didn't go home again until after 4:30. My body then proceeded to wake me up before 7. So Sunday was spent wandering around aimlessly, doing the odd bit of crochet and the odd bit of reading, before dying at 7:30. On the upside, I did sleep alright last night. Very tired today though, and rather achey in my eyes, trouble focusing too, but I'm getting used to that.
Must go and pick up a script this afternoon for the Salofalk. Mum dropped it off on Friday but the chemist didn't bother telling her he didn't have any, so I trudged over there Friday afternoon to pick it up and no such luck. Didn't think to tell him while I was there to fill the enemas and the other prednisone, so will have to leave my script there again today so he can fill them. He annoys me with things. This is the second time he's done it to me (not had the stuff and not bothered to tell me) since starting all the new meds, and he stuffed up the dosage (would have had me taking 90mg of prednisone rather than the prescribed 40mg).... Not terribly happy about it all, and I'm placing bets he won't have the enemas (again). Bah humbug.
Still no kitten.
Friday night was sleepy time. Seriously, 12 hours of beautiful sleep. I loved every minute of it. Yeah sure, woke up a few times, but it was the simple roll over and go back to sleep moments, not the ah Gods the pain! moments. They seem to be fading. Maybe it was just my body getting used to the meds. I hope!
Saturday wasn't feeling too brilliant, just a coldy thing still, but decided I was shopping. Damnit, I need something to keep my sanity. It resulted in a few new bits of yarn, a new mug (which says "If I knit fast enough does it count as exercise?"), a recipe book for Crohn's, Colitis, Celiac (can't spell it, but hey), and IBS. Some nice looking recipes in there, but it's all based on the Specific Carbohydrate Diet, and most of what I've heard says to take that one with a rather large grain of salt. That, and I can't stand any diet that says I can't have potato. :) Also ended up with another Kimmi Doll, Kaori. Strength. She's one of the ones I've been looking for, so I was quite stoked to find her. Was also informed while I was there by the guy behind the counter that new ones are hitting the store this week, which is awesome because I believe a few of the ones I haven't been able to find are because they're new. I know it can be viewed as wasted money, but it's just something to keep my head up. While it's easy to say to yourself to be strong, and to have faith and belief in yourself, it's a lot harder to actually maintain this, particularly when you're curled up crying on the floor. But having a physical representation of these things kinda helps because you see it through the tears and you stop for a sec to think on it, and that sec turns into a minute and that minute keeps going and it reminds you of what you need to do. At least that's how it works for me, so I view it as a worthwhile waste of money. :)
Saturday night my parents, brother and I went to one of our locals for dinner in celebration of my brother's birthday. They do amazing pizza there, so we got a supreme, meat lovers, and a bbq chicken one to split between the four of us, along with garlic bread. My gods they were delicious, particularly the chicken one. Bbq sauce, chicken, sweet chilli sauce, sour cream.... I think there may have been mushroom on it too. Enjoyed it, and even managed to sit back a few minutes to fully appreciate a good meal. And then the old hag came to play. Spent the next twenty to thirty minutes in the ladies at the local shitting liquid fire. On the up side, I did discover that there were thirty one visable screws on the inside of the cubical door, five different sorts/sizes. To make it even sadder, I could name the different types of screws, and could recognise that they were most likely stainless steel. Drove everyone home, took imodium, and curled up and cried for a little while until The Bill started and made everything slightly better.
Saturday night was hell. Didn't get to sleep until after 11, then the insomniac came out to party at about 2:30 and didn't go home again until after 4:30. My body then proceeded to wake me up before 7. So Sunday was spent wandering around aimlessly, doing the odd bit of crochet and the odd bit of reading, before dying at 7:30. On the upside, I did sleep alright last night. Very tired today though, and rather achey in my eyes, trouble focusing too, but I'm getting used to that.
Must go and pick up a script this afternoon for the Salofalk. Mum dropped it off on Friday but the chemist didn't bother telling her he didn't have any, so I trudged over there Friday afternoon to pick it up and no such luck. Didn't think to tell him while I was there to fill the enemas and the other prednisone, so will have to leave my script there again today so he can fill them. He annoys me with things. This is the second time he's done it to me (not had the stuff and not bothered to tell me) since starting all the new meds, and he stuffed up the dosage (would have had me taking 90mg of prednisone rather than the prescribed 40mg).... Not terribly happy about it all, and I'm placing bets he won't have the enemas (again). Bah humbug.
Still no kitten.
Friday, April 17, 2009
Not so bad today, and a recipe
Slept well last night. Only woke up once I think. Mind, had taken phenerghan to dry up a stuffy nose, and that stuff knocks me for a six, so maybe that had something to do with it.
Food from last night's dinner (and then left overs of the same for lunch today) seem to be going okay. Apricot chicken, mashed potato, and steamed cabbage and carrot (yes, I'm a nutter who loves cabbage). Recipe for apricot chicken is somewhere below. Have also found a fruit juice that goes okay. Breakfast juice, it's usually got orange and pineapple and apple and a few other bits and pieces in it, and they add various vitamins too. I was worried it would go straight through, or just cause pain, but it didn't. A previous juice - apple, banana and mango - not so fantastic. But it's nice to find a fruit juice that I can have.
Feeling blah at the moment, rather groggy and stuffy and achey. I don't like the onset of colds anymore than I like having the actual cold. *shrugs* Anyway.
No pain while I was eating yesterday, or today, so maybe the other day was just a random. I hope it was, cause that amount of pain is just flat out not good.
Recipe for Apricot Chicken (courtesy of my mum)
Very quick and easy, goes very good with rice, but goes just as good with vegies or whatever else you feel like having with it. Sweet, but not too sweet. Normally, I don't like apricots, but this is an exception. Also looking at trying this with pineapple instead of apricots and seeing if it's any good.
1 or 2 onions, sliced or diced however you like
1 or 2 chicken breasts, cut up in bite size pieces
1 can of apricots in nectar
1 packet of french onion soup, mixed up in about 2 cups of water
Fry onion in some olive oil (or other oil if you'd like, we just use olive oil at home) until starting to colour. Don't let it burn though, keep stirring.
Add chicken, and continue stirring until chicken is cooked and tender.
Add apricots and nectar.
Add soup and water.
It may be a bit runny, if so just mix a small amount of corn flour with some water and add to the mix, this will thicken it.
Enjoy!
PS- Still no kitten.
Food from last night's dinner (and then left overs of the same for lunch today) seem to be going okay. Apricot chicken, mashed potato, and steamed cabbage and carrot (yes, I'm a nutter who loves cabbage). Recipe for apricot chicken is somewhere below. Have also found a fruit juice that goes okay. Breakfast juice, it's usually got orange and pineapple and apple and a few other bits and pieces in it, and they add various vitamins too. I was worried it would go straight through, or just cause pain, but it didn't. A previous juice - apple, banana and mango - not so fantastic. But it's nice to find a fruit juice that I can have.
Feeling blah at the moment, rather groggy and stuffy and achey. I don't like the onset of colds anymore than I like having the actual cold. *shrugs* Anyway.
No pain while I was eating yesterday, or today, so maybe the other day was just a random. I hope it was, cause that amount of pain is just flat out not good.
Recipe for Apricot Chicken (courtesy of my mum)
Very quick and easy, goes very good with rice, but goes just as good with vegies or whatever else you feel like having with it. Sweet, but not too sweet. Normally, I don't like apricots, but this is an exception. Also looking at trying this with pineapple instead of apricots and seeing if it's any good.
1 or 2 onions, sliced or diced however you like
1 or 2 chicken breasts, cut up in bite size pieces
1 can of apricots in nectar
1 packet of french onion soup, mixed up in about 2 cups of water
Fry onion in some olive oil (or other oil if you'd like, we just use olive oil at home) until starting to colour. Don't let it burn though, keep stirring.
Add chicken, and continue stirring until chicken is cooked and tender.
Add apricots and nectar.
Add soup and water.
It may be a bit runny, if so just mix a small amount of corn flour with some water and add to the mix, this will thicken it.
Enjoy!
PS- Still no kitten.
Thursday, April 16, 2009
Choya
Belief in yourself. Who is myself? I know who, or rather what, the meds make me. Who was I? It worries me that I actually struggle to remember, but I feel as though I owe myself the chance to believe in something other than pain, which is about all I can believe in lately.
Me. Who am I? Who am I without the meds?
I am a confident person, and if I'm not, I'll pretend it until I am.
I am stubborn. Your herd of goats does not stand a chance.
I am a determined human being, yet in the same breath I'll change my mind like the autumn breeze.
I enjoy reading. Crochet. Knitting. Photography.
I like music. A lot. I love a good dvd.
I love Disney. I love Studio Ghibli.
I adore candles. And incense.
I love food. Eating it. Cooking it. Smelling it. Particularly smelling it cook. Lovely.
I like chai tea with a little milk. I like Bundaberg rum.
I love beautiful things that have no purpose other than to be beautiful.
I love animals and the unconditional love and support they offer.
I would do anything to find that little black and white kitten in my bottom drawer one morning.
I will always love my Molly. Sleep well my girl.
I have a clear face, the odd black head occasionally, but rarely anything more.
I have shiny, golden, light brown curls.
I am trying (and succeeding) to lose weight. Till then I'm cuddly.
I have clear blue eyes.
I like the freckles on my shoulders.
I am a loyal and protective friend.
I have a sense of humour that likes to hide.
I love my inner child and the things she gets up to.
You can take the girl out of the country but you will always fail at trying to take the country out of the girl.
I love my little red car and the places she takes me.
I am a dreamer. Rarely a do-er.
I'm driven with dollar signs in my eyes.
Who am I with the meds and the old hag inside me? Hardly any of the above.
I figure now is a good time to reflect on who I really am, what there is to believe in, because there are many times lately where I'm just too miserable to thing on any of it. There are sometimes though when I'm certain I'll pull through, and this is what I am. This is what I can be. This is what I need to believe in.
Me. Who am I? Who am I without the meds?
I am a confident person, and if I'm not, I'll pretend it until I am.
I am stubborn. Your herd of goats does not stand a chance.
I am a determined human being, yet in the same breath I'll change my mind like the autumn breeze.
I enjoy reading. Crochet. Knitting. Photography.
I like music. A lot. I love a good dvd.
I love Disney. I love Studio Ghibli.
I adore candles. And incense.
I love food. Eating it. Cooking it. Smelling it. Particularly smelling it cook. Lovely.
I like chai tea with a little milk. I like Bundaberg rum.
I love beautiful things that have no purpose other than to be beautiful.
I love animals and the unconditional love and support they offer.
I would do anything to find that little black and white kitten in my bottom drawer one morning.
I will always love my Molly. Sleep well my girl.
I have a clear face, the odd black head occasionally, but rarely anything more.
I have shiny, golden, light brown curls.
I am trying (and succeeding) to lose weight. Till then I'm cuddly.
I have clear blue eyes.
I like the freckles on my shoulders.
I am a loyal and protective friend.
I have a sense of humour that likes to hide.
I love my inner child and the things she gets up to.
You can take the girl out of the country but you will always fail at trying to take the country out of the girl.
I love my little red car and the places she takes me.
I am a dreamer. Rarely a do-er.
I'm driven with dollar signs in my eyes.
Who am I with the meds and the old hag inside me? Hardly any of the above.
I figure now is a good time to reflect on who I really am, what there is to believe in, because there are many times lately where I'm just too miserable to thing on any of it. There are sometimes though when I'm certain I'll pull through, and this is what I am. This is what I can be. This is what I need to believe in.
Shoo pain, don't bother me.
So yesterday. Had forgotten to bring lunch to work, so buggered off to Hungry Jacks (Burger King) and found myself a whopper meal. Brought it back to work and ate. A bit of discomfort as I ate, but I enjoyed having a change. Surprisingly, the greasy crap that went in my mouth yesterday lunch time has yet to have any effect on me other than that initial discomfort while eating it. Interesting. I'd have thought that out of rice or a greasy burger and fries that the latter would go through me like rocket fuel and the other would just turn to glue. Clearly not the case.
Yesterday, rather strange (mild to moderate) pain/discomfort while enema bound, thus it only lasted about half an hour. Wasn't sure what it was, just knew it wasn't going to stay there while I was in pain.
Last night had pumpkin soup for dinner. Delicious. However, the discomfort that had been there at lunch turned into quite severe agony during dinner and chose to stick around for a good ten to fifteen minutes afterwards. Rather like a very severe dose of wind that you can't get rid off (and when you do it's seriously powered up enough to scoot you forward a few feet) except it was more up near my rib cage as opposed to in my belly where wind would be. Cried a bit, dealt with it. Later tried a piece of my brother's birthday cake and the same thing happened. I'm really hoping that the meds aren't doing bad things in there. My body's already screwed up enough as it is without meds doing more damage. My reaction to more pain was to cry a bit, to which my father's response was to "Just shoosh". I'll give him 'just shoosh' next time he's in pain. Git. Yeah, I'm still quite a bit cranky at him. When the world is going to shite, the last thing you need is a not caring attitude from those around you who are meant to form your support network, however it is nice to know a tv show is more important to him than the fact his daughter is curled up and crying in agony.
Would have slept rather well last night had it not been for my brother waking me up twice, the second time I was nearly asleep again and he started singing out so that brought on three hours of insomnia. Not quite so happy about this, as dad's cold is starting to kick in. So. I'm currently tired, sore, sick and generally not so happy. Did however manage to avoid massive gas explosions both throughout the night and this morning.
Really, very over everything at the moment. I've still got 3 of my 4 main symptoms, plus all the delightful side effects of the meds. I'm spending a small fortune on them, and they're just making me worse. Not far of packing it in right now.
Still no kitten in my draw.
Yesterday, rather strange (mild to moderate) pain/discomfort while enema bound, thus it only lasted about half an hour. Wasn't sure what it was, just knew it wasn't going to stay there while I was in pain.
Last night had pumpkin soup for dinner. Delicious. However, the discomfort that had been there at lunch turned into quite severe agony during dinner and chose to stick around for a good ten to fifteen minutes afterwards. Rather like a very severe dose of wind that you can't get rid off (and when you do it's seriously powered up enough to scoot you forward a few feet) except it was more up near my rib cage as opposed to in my belly where wind would be. Cried a bit, dealt with it. Later tried a piece of my brother's birthday cake and the same thing happened. I'm really hoping that the meds aren't doing bad things in there. My body's already screwed up enough as it is without meds doing more damage. My reaction to more pain was to cry a bit, to which my father's response was to "Just shoosh". I'll give him 'just shoosh' next time he's in pain. Git. Yeah, I'm still quite a bit cranky at him. When the world is going to shite, the last thing you need is a not caring attitude from those around you who are meant to form your support network, however it is nice to know a tv show is more important to him than the fact his daughter is curled up and crying in agony.
Would have slept rather well last night had it not been for my brother waking me up twice, the second time I was nearly asleep again and he started singing out so that brought on three hours of insomnia. Not quite so happy about this, as dad's cold is starting to kick in. So. I'm currently tired, sore, sick and generally not so happy. Did however manage to avoid massive gas explosions both throughout the night and this morning.
Really, very over everything at the moment. I've still got 3 of my 4 main symptoms, plus all the delightful side effects of the meds. I'm spending a small fortune on them, and they're just making me worse. Not far of packing it in right now.
Still no kitten in my draw.
Wednesday, April 15, 2009
Just an update.
My mum gave me a new hand cream yesterday, which was rather nice of her and completely out of the blue. It's a lavender one, really nice. Not too overpowering, but strong enough that you can smell it when you're looking for it. Used a little bit on my face last night before I went to bed (ignore that it's hand cream, it's moisturiser and can be used anywhere in my opinion), as well as my standard spray stuff (Bach Rescue Remedy Sleep. Works miracles for sleep, though lately not so brilliant) and I had the best night's sleep in a while. Only woke up once which was fantastic. Not sure why I feel like I haven't slept though.
Woke up this morning and decided it was going to be a good day. Then my stomach decided I was going to spend the next 20 minutes on the loo, pooping and in pain. Running late by this stage, so miserably skipped my morning milo and brekkie and trudged through the rest of my routine, managed to squeeze time for a hot cross bun before I left. Not so much a happy camper by the time I left, but hey. So far, that's the only incident today. That and randomly breaking down bawling my eyes out because I'm sick of everything going straight through me. Seriously, even the supposedly safe foods like rice and potato seem to be doing it. It's just depressing.
My face looks like a war zone. Mind, that's probably because it is. I've never been one to have a strict regime when it comes to my face, just wash it in the shower then cover it up with cover up afterwards. Now though, cleanser, toner, moisturister, etc, etc, and it's being done twice a day. Trouble is, I compulsively pick at any blemishes, so they just end up big and red and sore. Downtown Blackhead is the worst at the moment. It's just a big red mess. Yuck. Still, hopefully the new line of attack will fix it and keep it looking alright.
My brother's 19th today. Happy birthday mate (even though you'll never read this). Hope it's a good one, and you'll get your pressies from me when I get home.
Still no kitten in my bottom draw.
Woke up this morning and decided it was going to be a good day. Then my stomach decided I was going to spend the next 20 minutes on the loo, pooping and in pain. Running late by this stage, so miserably skipped my morning milo and brekkie and trudged through the rest of my routine, managed to squeeze time for a hot cross bun before I left. Not so much a happy camper by the time I left, but hey. So far, that's the only incident today. That and randomly breaking down bawling my eyes out because I'm sick of everything going straight through me. Seriously, even the supposedly safe foods like rice and potato seem to be doing it. It's just depressing.
My face looks like a war zone. Mind, that's probably because it is. I've never been one to have a strict regime when it comes to my face, just wash it in the shower then cover it up with cover up afterwards. Now though, cleanser, toner, moisturister, etc, etc, and it's being done twice a day. Trouble is, I compulsively pick at any blemishes, so they just end up big and red and sore. Downtown Blackhead is the worst at the moment. It's just a big red mess. Yuck. Still, hopefully the new line of attack will fix it and keep it looking alright.
My brother's 19th today. Happy birthday mate (even though you'll never read this). Hope it's a good one, and you'll get your pressies from me when I get home.
Still no kitten in my bottom draw.
Tuesday, April 14, 2009
Yay for Team Imodium!
Aha! I will level the scores as of yesterday, and thus the scores will stand at me and imodium (now to be known as Team Imodium) 1, old fogarty hag 0. Read the box of imodium last night and realised that the Imodium advanced I've got treats the gas too, not just the poop. So, an imodium later and I slept better. Whoo!
Up to having to get the prednisone filled. The joy of living with my parents means if one of them's got time in the day they can drop the script off at the chemist for me to get filled and I just pick it up after work. It works well. Didn't realise I was so close to needing more, it feels like I only just started it, but I noticed this morning I had two days worth left. Oops!
Rather tired today, though it feels like a different tired to usual. Also feeling stodgy, kinda like I'm coming down with a cold. If I am, dad may get the cranky end of me. He's just so stubborn with having a cold (won't take pain killers/cough meds/stuff to dry his nose up) that a/ he gets really grumpy and b/ it's almost inevitable that someone else gets it after him. And who better than the person who has a demented, weakened immune system?
Meanwhile, my eyes are driving me insane. Just the focusing issue, but it's really bugging me. And the messages getting from my brain to my hands just don't seem to be happening sometimes. Thus, this post is rather edited, otherwise mistakes would be in near every word. Bah humbug.
I had a dream last night that I had to leave work for some reason, and then suddenly remembered I had this teeny (teeny to the point of sitting comfortably in one hand) black and white kitten called Belle in the bottom draw of my desk so I had to go back for her. Went back and got her, got home and somehow had her and another little kitten (nearly as small but not quite), but this one was a little grey tabby. I love animals, and would in particular love a pet kitten. My first instinct upon getting to work this morning was indeed to check my bottom draw for a teeny black and white kitty. Sadly, no such luck.
Up to having to get the prednisone filled. The joy of living with my parents means if one of them's got time in the day they can drop the script off at the chemist for me to get filled and I just pick it up after work. It works well. Didn't realise I was so close to needing more, it feels like I only just started it, but I noticed this morning I had two days worth left. Oops!
Rather tired today, though it feels like a different tired to usual. Also feeling stodgy, kinda like I'm coming down with a cold. If I am, dad may get the cranky end of me. He's just so stubborn with having a cold (won't take pain killers/cough meds/stuff to dry his nose up) that a/ he gets really grumpy and b/ it's almost inevitable that someone else gets it after him. And who better than the person who has a demented, weakened immune system?
Meanwhile, my eyes are driving me insane. Just the focusing issue, but it's really bugging me. And the messages getting from my brain to my hands just don't seem to be happening sometimes. Thus, this post is rather edited, otherwise mistakes would be in near every word. Bah humbug.
I had a dream last night that I had to leave work for some reason, and then suddenly remembered I had this teeny (teeny to the point of sitting comfortably in one hand) black and white kitten called Belle in the bottom draw of my desk so I had to go back for her. Went back and got her, got home and somehow had her and another little kitten (nearly as small but not quite), but this one was a little grey tabby. I love animals, and would in particular love a pet kitten. My first instinct upon getting to work this morning was indeed to check my bottom draw for a teeny black and white kitty. Sadly, no such luck.
Monday, April 13, 2009
Oh look, another blog update.
Urgh. Lack of sleep on Saturday night has finally caught up with me. Posting this, reading, then sleeping.
Slept better last night, only up a few times. Awake a couple more times but able to go back to sleep rather quickly with no issues. Though, did wake up rather upset at one point. Had a dream that my dog (who I had put down 18 months ago and still miss so much) was still alive, but mum was making me put her to sleep (actually give her the needle myself rather than take her to the vet's), so I did and I was crying and I must have started actually crying, not just in my dream, 'cause I woke up and was crying and yeah. Got myself back to sleep eventually after that.
This morning, doped myself up with imodium (seriously, I can see that becoming a deity) and braved the world. Went to the shops with the aim of buying my brother something else for his birthday, a birthday present for a friend's birthday in early May, and a present for myself. All of the above were achieved, along with breakfast. See, the present theory went along these lines. I'm feeling like shite lately with all this garbage going on in my guts, and I thought I really did deserve something for putting up with it (ignore the fact that I'm saving every spare penny for a house). So I thought to myself, if I were someone else giving a present to me as I am right now, what would I get myself? Book? CD? DVD? Kimmi doll. (www.kimmidoll.com or www.kimmidoll.com.au) Despite not owning any, I am absolutely hooked on the idea of them. Trouble was, which one? In the end, the me that was a different person bought the me that is me Choya (Belief). Her spirit is released by believing in yourself and using your gifts to become all you can be. The me who was buying the gift thought when the me who was receiving the gift felt low, or incapacitated by the yucky stuff going on, she could be reminded of who she really is, the person without the disease, and all she is capable of doing and being, and know that everything is going to be okay.
Breakfast was Subway. I can safely say I love a Subway breakfast. And I can safely say that what I order for brekkie never plays up with me. 6 inch bacon and egg on white, with swiss cheese, onion and chipotle sauce. Delicious!
Lunch today was rice, with salt, pepper, curry powder and milk added to taste, and minted peas thrown in while it all cooked. Came out rather like a risotto, and possibly would have been even nicer if I'd used arborio instead of plain old white rice. Still, was nice enough, and I had a bit of left over roast chook to throw in too. At this point, I'm fairly sure it's going okay with the gut. Dinner could be a worry. Left over onion soup went into the mix of a shepherd's pie, along with various other bits and pieces (mum cooked, and while her food is always delicious, as I don't always watch her cook I don't know exactly what goes in it), so we'll see how it goes.
Found some more stuff to attack the blackheads with. Clearasil blackhead control wipes. So hopefully the scrub stuff (Neutragena of some oil eliminating sort I believe) and the wipes will combine to be a deadly force on the invading guck in my face. Bad enough my gut giving me crap, without my face jumping on board too.
Anyway, I believe that's all I had to say today. Stay tuned for the next episode. Will it be a drama? Soapy? War flick? Comedy? Stuffed if I know! Will have to wait and see.
Slept better last night, only up a few times. Awake a couple more times but able to go back to sleep rather quickly with no issues. Though, did wake up rather upset at one point. Had a dream that my dog (who I had put down 18 months ago and still miss so much) was still alive, but mum was making me put her to sleep (actually give her the needle myself rather than take her to the vet's), so I did and I was crying and I must have started actually crying, not just in my dream, 'cause I woke up and was crying and yeah. Got myself back to sleep eventually after that.
This morning, doped myself up with imodium (seriously, I can see that becoming a deity) and braved the world. Went to the shops with the aim of buying my brother something else for his birthday, a birthday present for a friend's birthday in early May, and a present for myself. All of the above were achieved, along with breakfast. See, the present theory went along these lines. I'm feeling like shite lately with all this garbage going on in my guts, and I thought I really did deserve something for putting up with it (ignore the fact that I'm saving every spare penny for a house). So I thought to myself, if I were someone else giving a present to me as I am right now, what would I get myself? Book? CD? DVD? Kimmi doll. (www.kimmidoll.com or www.kimmidoll.com.au) Despite not owning any, I am absolutely hooked on the idea of them. Trouble was, which one? In the end, the me that was a different person bought the me that is me Choya (Belief). Her spirit is released by believing in yourself and using your gifts to become all you can be. The me who was buying the gift thought when the me who was receiving the gift felt low, or incapacitated by the yucky stuff going on, she could be reminded of who she really is, the person without the disease, and all she is capable of doing and being, and know that everything is going to be okay.
Breakfast was Subway. I can safely say I love a Subway breakfast. And I can safely say that what I order for brekkie never plays up with me. 6 inch bacon and egg on white, with swiss cheese, onion and chipotle sauce. Delicious!
Lunch today was rice, with salt, pepper, curry powder and milk added to taste, and minted peas thrown in while it all cooked. Came out rather like a risotto, and possibly would have been even nicer if I'd used arborio instead of plain old white rice. Still, was nice enough, and I had a bit of left over roast chook to throw in too. At this point, I'm fairly sure it's going okay with the gut. Dinner could be a worry. Left over onion soup went into the mix of a shepherd's pie, along with various other bits and pieces (mum cooked, and while her food is always delicious, as I don't always watch her cook I don't know exactly what goes in it), so we'll see how it goes.
Found some more stuff to attack the blackheads with. Clearasil blackhead control wipes. So hopefully the scrub stuff (Neutragena of some oil eliminating sort I believe) and the wipes will combine to be a deadly force on the invading guck in my face. Bad enough my gut giving me crap, without my face jumping on board too.
Anyway, I believe that's all I had to say today. Stay tuned for the next episode. Will it be a drama? Soapy? War flick? Comedy? Stuffed if I know! Will have to wait and see.
Sunday, April 12, 2009
And now for something slightly more normal
After a slight dose of insanity. I am capable of slight humor, despite feeling awful. Spent last night dealing with gas/wind issues again. It's really a case of russian roulette when it comes to that, a 50/50 chance of just gas but the other chance of gas and needing to crap. So every time I get massive gut pains (which as it turned out last night, was every time I turned over in bed), I'd end up having to run to the loo just in case. Get back to bed, and I must just doze off before turning over and bam! Repeat. Seriously, only bit of proper sleep I got was between about 5:30 this morning and 8, which is when the diarrhoea appeared (again). A few trips to the loo and some imodium later and I was vaguely becoming human again.
Spent the day in a zombie-like state, not really doing much of anything due to tiredness. Did however achieve some knitting and crocheting, which it feels good to have done. Not quite so sore in the fingers today.
Also noticed today that the past few days I haven't been quite so raving starving. Maybe my body is slowly getting used to the amount of meds? I'm hoping so. I don't enjoy being that hungry, particularly when I know I've already over eaten.
Despite having no pimple out breaks, and despite being in denial for about five days now, I think I must finally wave the white flag and surrender to the new colony which has established itself on my face. Blackhead Central appeared on my nose out of the blue, bringing with it Downtown Blackhead which has established itself on my chin. Blackhead East and Blackhead West have invaded my cheeks, and Upper Blackhead has taken hostages and slaughtered natives on my forehead. Despite protesting with chemical warfare (aka - anti oil/pimple/blackhead stuff), my face has failed to prevent this onslaught. In a final display of disrespect for the face they invaded, the residents of Blackhead Central and Downtown Blackhead in particular have started building oil refineries in the dozens. Chemical warfare has once again failed. Continued chemical warfare has also failed. Water mains bursting leaks may ensue.
Did make it back to my wii today for all of about 10 minutes. 40 days since my last effort on there. Have been feeling like shite for longer than that, but got to the "eh, feck it" point 40 days ago. I missed boxing. I know on the wii that I'm not actually hitting anything, but it still feels good to lose myself in timing and pretend to be hitting something or someone. Need to set time aside for it more often.
Oh, and some advice for when you're enema bound/can't move off the loo/curled up in agony. I suggest keeping a pile of books next to your bed, next to the loo, and next to the sofa. A ds is also a good idea, though perhaps keep this on your person and a pile of games next to each mentioned place (more than 1 ds starts getting a bit on the pricey side, eh?). Currently Animal Crossing is getting me through things (yes I know, 21 and playing kiddy games. You try taking things seriously when you're in one of those situations! I dare you!). Note pads, pens, pencils, etc are also awesome (writing, drawing, creating voodoo dolls....). A bottle of water kept in each location is good (re the toilet, keep it outside the toilet, and no, you can't just drink the toilet water). Hot water bottles/wheat bags will become your new deities. Cold packs can be similar.
Now, off to try nuclear warfare on my face invaders.
Spent the day in a zombie-like state, not really doing much of anything due to tiredness. Did however achieve some knitting and crocheting, which it feels good to have done. Not quite so sore in the fingers today.
Also noticed today that the past few days I haven't been quite so raving starving. Maybe my body is slowly getting used to the amount of meds? I'm hoping so. I don't enjoy being that hungry, particularly when I know I've already over eaten.
Despite having no pimple out breaks, and despite being in denial for about five days now, I think I must finally wave the white flag and surrender to the new colony which has established itself on my face. Blackhead Central appeared on my nose out of the blue, bringing with it Downtown Blackhead which has established itself on my chin. Blackhead East and Blackhead West have invaded my cheeks, and Upper Blackhead has taken hostages and slaughtered natives on my forehead. Despite protesting with chemical warfare (aka - anti oil/pimple/blackhead stuff), my face has failed to prevent this onslaught. In a final display of disrespect for the face they invaded, the residents of Blackhead Central and Downtown Blackhead in particular have started building oil refineries in the dozens. Chemical warfare has once again failed. Continued chemical warfare has also failed. Water mains bursting leaks may ensue.
Did make it back to my wii today for all of about 10 minutes. 40 days since my last effort on there. Have been feeling like shite for longer than that, but got to the "eh, feck it" point 40 days ago. I missed boxing. I know on the wii that I'm not actually hitting anything, but it still feels good to lose myself in timing and pretend to be hitting something or someone. Need to set time aside for it more often.
Oh, and some advice for when you're enema bound/can't move off the loo/curled up in agony. I suggest keeping a pile of books next to your bed, next to the loo, and next to the sofa. A ds is also a good idea, though perhaps keep this on your person and a pile of games next to each mentioned place (more than 1 ds starts getting a bit on the pricey side, eh?). Currently Animal Crossing is getting me through things (yes I know, 21 and playing kiddy games. You try taking things seriously when you're in one of those situations! I dare you!). Note pads, pens, pencils, etc are also awesome (writing, drawing, creating voodoo dolls....). A bottle of water kept in each location is good (re the toilet, keep it outside the toilet, and no, you can't just drink the toilet water). Hot water bottles/wheat bags will become your new deities. Cold packs can be similar.
Now, off to try nuclear warfare on my face invaders.
Letter to Crohn's Disease
Dear Old Hag Who Lives In Despite Despising My Intestines,
Scrap the "Dear" for one. You evil old hag. You are an insensitive, cruel, harsh, embarrassing, mean, spiteful, hateful, messy woman and my intestines are issuing you with your eviction notice. You were never a welcome tenant (in fact my intestines do not recall advertising space for rent) and you always fail to pay when your money is due.
You are no longer wanted, nor the misery, pain, discomfort, panic and embarrassment that you brought with you. The medicine military that has been sent in to evict you is not exactly welcome either, what with the blowing holes in my sanity and all. Yet despite the chaos that it is putting me through, the military is welcome to stay, as long as you piss the hell off. Yet you won't do that, will you? You'll just find some sneaky place to hide until they're gone and then poof! You'll be back. But don't worry. I'll just send more reinforcements in. They'll get you eventually, even if the doctors decide one day to tear out my dear old intestines, at least that way they might get you too.
Now piss off and don't come back. Bitch.
--Yours In A Shitty Mood
Scrap the "Dear" for one. You evil old hag. You are an insensitive, cruel, harsh, embarrassing, mean, spiteful, hateful, messy woman and my intestines are issuing you with your eviction notice. You were never a welcome tenant (in fact my intestines do not recall advertising space for rent) and you always fail to pay when your money is due.
You are no longer wanted, nor the misery, pain, discomfort, panic and embarrassment that you brought with you. The medicine military that has been sent in to evict you is not exactly welcome either, what with the blowing holes in my sanity and all. Yet despite the chaos that it is putting me through, the military is welcome to stay, as long as you piss the hell off. Yet you won't do that, will you? You'll just find some sneaky place to hide until they're gone and then poof! You'll be back. But don't worry. I'll just send more reinforcements in. They'll get you eventually, even if the doctors decide one day to tear out my dear old intestines, at least that way they might get you too.
Now piss off and don't come back. Bitch.
--Yours In A Shitty Mood
Saturday, April 11, 2009
*raspberry goes here*
Just a note to anyone who has to have enemas: it is highly recommended (by me at least) that you warm them. Things going up your butt the wrong way is just plain not nice, but it's even worse when they're cold. EVEN BIGGER NOTE!!! Don't make them too hot. This will burn your butt, which is highly NOT recommended. Even worse when butt is already stinging from crapping all day long. If you do accidently burn your butt, crying like a baby until it stops hurting is recommended. If burnt badly (ie, actually burnt, not just a sh!t that's hot, let it cool down a bit), immediate cold water while seeking medical advice/calling an ambo. Burns are not good. Also, note but not related to temperature, if you've got someone who can give you a hand with these evil spawns of the devil, bite your pride and accept that help. You've probably had to bite it enough by now anyway, so it can't hurt for making it easier for you.
Wasn't a hugely happy camper yesterday afternoon. Tired, over it all, issues as vaguely mentioned above.... Not a happy kid. Did however have that ordeal earlier yesterday afternoon, which allowed for a grumpy me to snag the last bottle of James Squire Golden Ale out of the fridge, then proceed on to a home brew Little Creatures. I don't drink much, haven't actually had anything for a few weeks until yesterday, but the odd drink calms me somewhat. I try not to get drunk these days. I know my "oops I'm drunk and can't stop drinking" point comes somewhere through my third drink, just not sure where exactly, so I limit myself to two these days. I'm a somewhat happy, calm drunk (despite only getting tipsy), so it was good yesterday to have those two.
Went to bed about 10 ish, got to sleep a bit before 11, woke up about 8 this morning with only two wake ups during the night. Rather sleepy right now, but it was nice to get a good night's sleep and a sleep in.
I cooked today. Maybe two years ago I was watching a Jamie Oliver show and he made onion soup. I drooled as I was watching that show and I've been itching to try it ever since. So this morning I made The Ultimate Onion Soup (as appearing in Jamie's Dinners, fantastic cook book, go buy it!) for lunch. It actually worked. I've never had onion soup before, but it was nice, and even mum and dad ate some which says something. People rarely try a full serve of my cooking. So far it hasn't had any effect on me, so hopefully it'll be something I can make occassionally (wouldn't want it all the time, but it is nice) when my gut's not so good and it'll be a settling food as opposed to an aggravating one.
Anyway. I think I'm off to the land of nod for a while this afternoon. Loving the long weekend that allows me to do stuff AND catch up on sleep. Normally it's one or the other any given weekend. Today though, sleep.
Wasn't a hugely happy camper yesterday afternoon. Tired, over it all, issues as vaguely mentioned above.... Not a happy kid. Did however have that ordeal earlier yesterday afternoon, which allowed for a grumpy me to snag the last bottle of James Squire Golden Ale out of the fridge, then proceed on to a home brew Little Creatures. I don't drink much, haven't actually had anything for a few weeks until yesterday, but the odd drink calms me somewhat. I try not to get drunk these days. I know my "oops I'm drunk and can't stop drinking" point comes somewhere through my third drink, just not sure where exactly, so I limit myself to two these days. I'm a somewhat happy, calm drunk (despite only getting tipsy), so it was good yesterday to have those two.
Went to bed about 10 ish, got to sleep a bit before 11, woke up about 8 this morning with only two wake ups during the night. Rather sleepy right now, but it was nice to get a good night's sleep and a sleep in.
I cooked today. Maybe two years ago I was watching a Jamie Oliver show and he made onion soup. I drooled as I was watching that show and I've been itching to try it ever since. So this morning I made The Ultimate Onion Soup (as appearing in Jamie's Dinners, fantastic cook book, go buy it!) for lunch. It actually worked. I've never had onion soup before, but it was nice, and even mum and dad ate some which says something. People rarely try a full serve of my cooking. So far it hasn't had any effect on me, so hopefully it'll be something I can make occassionally (wouldn't want it all the time, but it is nice) when my gut's not so good and it'll be a settling food as opposed to an aggravating one.
Anyway. I think I'm off to the land of nod for a while this afternoon. Loving the long weekend that allows me to do stuff AND catch up on sleep. Normally it's one or the other any given weekend. Today though, sleep.
Friday, April 10, 2009
Would you like diarrhoea with that?
No? Too bad, you've got it. Gargh! So over it today! Just when I think that maybe my original symptoms are beginning to fade, bam! Tired, achey, sore, grumpy and just so over it.
Food wise, I'm thinking there may be some guilty parties there. Looking at you dairy. And you curry. Both of which break my heart. Grand-daughter of a dairy farmer, have drank milk all my life and now I'm suspicious of it. And the curry? The thought of not being able to have curry actually brings a tear to my eye. I love it with a passion only out done by my love of potato, and it's just not fair.
Am thinking I may need to go back to a really bland diet after all and just work my way up gradually from there. At least I can eat potatoes? Please?
Yours truly,
One Sh!tty Blogger.
Yeah. Grumpy pants are on today. Have spent most of the day trying to work out whether I need to crap or puke, thankfully puking hasn't occurred yet.
Am thinking I may need to go back to a really bland diet after all and just work my way up gradually from there. At least I can eat potatoes? Please?
Yours truly,
One Sh!tty Blogger.
Thursday, April 9, 2009
Ow! Not fair!
So I spent most of the night tossing and turning and barely sleeping and dealing with major gas issues. Crawled out of bed this morning, made it to the kitchen and just about curled up on the floor in agony. Pain in a very specific spot (not sure if the place is significant or not, just very pin pointable location) in the lower right part of my abdomen which I'd rate about a 12 out of 10, and more pain at about an 8 out of 10 in about the same spot that hurts when I have the enemas. Pain in my knee was ignorable (which is a first) as I tried to not collapse on the floor. So I sat curled up on the balls of my feet for a minute or so. Options were, fall on floor and not move, or try and stand up and soldier on. Seeing as I have work today, falling on the floor sadly wasn't an option. Pain subsided gradually but there's still a vague niggle of it there now, and this was nearly three hours ago.
A few fingers are a bit sore today, and my wrists, and elbow, and shoulders, and knee, and toes (seriously, wtf?), but I've brought two wheat bags with me today, so I'll heat them up soon and vary where they go. See if I can't make the old hag go away for a bit.
Yeah, I've kinda started referring to it as that. At least in my mind. The name sounds like crone, which always sparks an image of an old hag in my mind, so all the aches and pains and oh dear Gods! moments I think can safely be lumped together into the image of an old hag. Horrible woman who shouldn't burden a 21 year old. I should whack her with her own cane, then we'll see who really owns this body.
Dad's managed to get himself a cold. This is dad, who never gets colds. Me on the other hand, I pick up every single bug that goes around. So I'm having fun trying to avoid this one because I figure if it can take my dad down, it can easilly take me, particularly seeing as the prednisone is an immunosuppressant (don't know how that's spelt, don't overly care).
Speaking of meds, up to my full dosage of Salofalk now. 6 tabs a day, which total 3 grams of the important stuff. Total of 10 tabs a day of stuff to try and treat this, plus the enemas. Oh yeah, plus the crap he's gonna prescribe me next time I see him.
Treatment wise, 2 weeks down, how many to go?
Off to heat up the wheat bags now. Bye!
A few fingers are a bit sore today, and my wrists, and elbow, and shoulders, and knee, and toes (seriously, wtf?), but I've brought two wheat bags with me today, so I'll heat them up soon and vary where they go. See if I can't make the old hag go away for a bit.
Yeah, I've kinda started referring to it as that. At least in my mind. The name sounds like crone, which always sparks an image of an old hag in my mind, so all the aches and pains and oh dear Gods! moments I think can safely be lumped together into the image of an old hag. Horrible woman who shouldn't burden a 21 year old. I should whack her with her own cane, then we'll see who really owns this body.
Dad's managed to get himself a cold. This is dad, who never gets colds. Me on the other hand, I pick up every single bug that goes around. So I'm having fun trying to avoid this one because I figure if it can take my dad down, it can easilly take me, particularly seeing as the prednisone is an immunosuppressant (don't know how that's spelt, don't overly care).
Speaking of meds, up to my full dosage of Salofalk now. 6 tabs a day, which total 3 grams of the important stuff. Total of 10 tabs a day of stuff to try and treat this, plus the enemas. Oh yeah, plus the crap he's gonna prescribe me next time I see him.
Treatment wise, 2 weeks down, how many to go?
Off to heat up the wheat bags now. Bye!
Wednesday, April 8, 2009
Ah sh!t.
Oh owwwww! Maybe that curry doesn't go so well with me after all. Or maybe I just ate it a bit quickly..... Or too much..... Oops....
Just another day with the old hag...
Slept alright last night, only woke up two or three times. Was nice. Gave me a chance to get comfy and curl up under the blankets and actually nod off into a deepish sleep. Annoyed that I woke up at 5 though when my alarm's set for 6. Managed a bit of sleep in that time, just coulda done without waking up that time.
Relaxed a bit yesterday. My brother was away for the night, so it was a bit quieter, and we had curry (!) for dinner. Absolutely love curry, and haven't had it in a while, so I was both really looking forward to it and rather hesitant at the same time. Wasn't sure how it would go with the insides, but it's gone fine. And as a result of my dad forgetting the left overs were there and taking sandwiches to work instead, I get curry for lunch too! Whoo!
Also have a little bit of peace of mind in having found out that the enemas generally do cause a bit of pain and discomfort. While it's still sore, and still not comfy, at least I know it's meant to be like that and I'm not panicking about whether it's doing damage in there or not. Yesterday was also the first time I haven't disolved into a mess over the ordeal too, so hey. There's some ground gained.
Got a little bit of crocheting in last night too before my hands started seizing up. Felt good to work on some of the more intricate stuff compared to the big bulky blankets. The blankets are still good, but the smaller stuff takes a bit more out of my fingers and wrists, so I know if I can do them then the pain obviously isn't so bad. Being unable to work on even the blankets sometimes just makes me cry.
While not dramatically painful, I have noticed the odd chest/stomach muscle pain in the past few days. Not hugely fun, but not hugely painful either. I guess more just a discomfort than a pain, maybe a 2 or 3 out of 10. Also my right leg in particular has felt for the past week or so as though it's about to cramp. Though it's been continually feeling like it, so I continually feel worried that I'm about to get an almighty cramp that's going to render me useless and crying like a baby on the ground. Bah humbug.
Have also put on weight. Definitely a bit rounder in the face, and while I haven't weighed myself in a few days, when I did I'd put on 1.6kgs in a week. A bit sad, because that's half the weight that it's taken me three months to lose. I step forward, 6 steps backwards. *sigh goes here*
Relaxed a bit yesterday. My brother was away for the night, so it was a bit quieter, and we had curry (!) for dinner. Absolutely love curry, and haven't had it in a while, so I was both really looking forward to it and rather hesitant at the same time. Wasn't sure how it would go with the insides, but it's gone fine. And as a result of my dad forgetting the left overs were there and taking sandwiches to work instead, I get curry for lunch too! Whoo!
Also have a little bit of peace of mind in having found out that the enemas generally do cause a bit of pain and discomfort. While it's still sore, and still not comfy, at least I know it's meant to be like that and I'm not panicking about whether it's doing damage in there or not. Yesterday was also the first time I haven't disolved into a mess over the ordeal too, so hey. There's some ground gained.
Got a little bit of crocheting in last night too before my hands started seizing up. Felt good to work on some of the more intricate stuff compared to the big bulky blankets. The blankets are still good, but the smaller stuff takes a bit more out of my fingers and wrists, so I know if I can do them then the pain obviously isn't so bad. Being unable to work on even the blankets sometimes just makes me cry.
While not dramatically painful, I have noticed the odd chest/stomach muscle pain in the past few days. Not hugely fun, but not hugely painful either. I guess more just a discomfort than a pain, maybe a 2 or 3 out of 10. Also my right leg in particular has felt for the past week or so as though it's about to cramp. Though it's been continually feeling like it, so I continually feel worried that I'm about to get an almighty cramp that's going to render me useless and crying like a baby on the ground. Bah humbug.
Have also put on weight. Definitely a bit rounder in the face, and while I haven't weighed myself in a few days, when I did I'd put on 1.6kgs in a week. A bit sad, because that's half the weight that it's taken me three months to lose. I step forward, 6 steps backwards. *sigh goes here*
Tuesday, April 7, 2009
Sky is rainy, but it's slightly sunnier?
Hmm.... So I went down hill a bit yesterday afternoon. Really just wanted to toss the towel in. Butt was sore from pooping, and toilet paper was feeling like sand paper, and a rather course variety at that.
I'm a rather grumpy bitch when it comes to all the crap at the moment. I do apologise to people, and I know I should try not to be, but at times I just sit there thinking "Why me?" and it doesn't seem fair that I should have to put up with it alone. It makes it harder though when the people you're whinging to (okay, so they don't deserve the mouthful I give them, but they're there and they're meant to listen) start whinging back. I'm not whinging to have you make me feel worse! I'm bloody well whinging to make myself feel better. Don't listen if you don't want to, just don't throw it back on me and make me feel ten times worse than I already am. It already feels bad enough.
Dinner was nice last night, and it doesn't seem to be causing any issues. Generally by now I'd be not so good if it were going to play up. Steak and onion and mushroom stuff, with mashed potato, and steamed carrots and zucchini. Quite yummy. And I get left overs of the steak and onion stuff for lunch, so hopefully things'll behave today.
On the slightly brighter side, I slept a bit better last night. Woke up maybe three or four times, once possibly because a mouse knocked my box of tissues off my cupboard. Also, despite everything being sore last night (went to bed because I couldn't do anything involving my hands, and I normally sit and crochet after dinner), things are feeling a little better this morning. Here's to hoping!
I'm a rather grumpy bitch when it comes to all the crap at the moment. I do apologise to people, and I know I should try not to be, but at times I just sit there thinking "Why me?" and it doesn't seem fair that I should have to put up with it alone. It makes it harder though when the people you're whinging to (okay, so they don't deserve the mouthful I give them, but they're there and they're meant to listen) start whinging back. I'm not whinging to have you make me feel worse! I'm bloody well whinging to make myself feel better. Don't listen if you don't want to, just don't throw it back on me and make me feel ten times worse than I already am. It already feels bad enough.
Dinner was nice last night, and it doesn't seem to be causing any issues. Generally by now I'd be not so good if it were going to play up. Steak and onion and mushroom stuff, with mashed potato, and steamed carrots and zucchini. Quite yummy. And I get left overs of the steak and onion stuff for lunch, so hopefully things'll behave today.
On the slightly brighter side, I slept a bit better last night. Woke up maybe three or four times, once possibly because a mouse knocked my box of tissues off my cupboard. Also, despite everything being sore last night (went to bed because I couldn't do anything involving my hands, and I normally sit and crochet after dinner), things are feeling a little better this morning. Here's to hoping!
Monday, April 6, 2009
Just a quickie...
Okay, so I'm alive. And in pain. What's new?
Spent the night tossing and turning and not sleeping real well, was awake pretty much once an hour throughout the whole night. Coulda been some of the skin off the roast chook for dinner, or the stuffing, or maybe just the amount of oil on the baked veg (although truthfully there wasn't that much compared with what's on other stuff I eat). *shrugs* Not sure what it was, but something didn't overly agree with my stomach. Also spent the night trying to work out whether I was hot or cold. Would wake up drenched in sweat with not so much as a sheet on, and a few moments later would be absolutely freezing, and then it would swing back the other way. Not much fun.
Wrists are sore, right hand fingers are sore, right elbow's aching a bit, and my right knee and shoulder are a bit dull and achey. On the up side, my wrist wrest for my mouse at work has finally arrived (after having been on back order for a few weeks) so maybe that'll give me a bit of relief. It was kinda interesting driving to work this morning though, rather difficult to get a good and comfortable grip on the steering wheel.
Very tired. Trouble with focusing. Blergh.
Spent the night tossing and turning and not sleeping real well, was awake pretty much once an hour throughout the whole night. Coulda been some of the skin off the roast chook for dinner, or the stuffing, or maybe just the amount of oil on the baked veg (although truthfully there wasn't that much compared with what's on other stuff I eat). *shrugs* Not sure what it was, but something didn't overly agree with my stomach. Also spent the night trying to work out whether I was hot or cold. Would wake up drenched in sweat with not so much as a sheet on, and a few moments later would be absolutely freezing, and then it would swing back the other way. Not much fun.
Wrists are sore, right hand fingers are sore, right elbow's aching a bit, and my right knee and shoulder are a bit dull and achey. On the up side, my wrist wrest for my mouse at work has finally arrived (after having been on back order for a few weeks) so maybe that'll give me a bit of relief. It was kinda interesting driving to work this morning though, rather difficult to get a good and comfortable grip on the steering wheel.
Very tired. Trouble with focusing. Blergh.
Sunday, April 5, 2009
Superglue please?
So yeah. Starting to fall apart a little at the seems right now. My brother's birthday's in 10 days. Despite that being a fair few days, most of those are weekdays which I work on, and next weekend is Easter, so that wipes that out, which left today for finding him his birthday present. Oh boy did I have fun. Grumpier and grumpier, ended up trying not to cry in the ladies at one point, just overwhelmed and such. It seemed like nothing would go right, and that everyone was out to either run into me with things/themselves, or get in my way. It got to the point where at the third mall I went to in an attempt to find this present a little boy of maybe 4 or 5 got chastised by his mum for just about crashing headlong into me, and he wouldn't move to let me past, and I just felt myself sag. I must have looked a sight, what with the sagging (which I'm sure was visable) and the black bags under my eyes, because despite not having the energy to say it was okay, and then probably appearing rather rude in just shoving past them to get out, nothing was said to me about it. I was just too exhausted and strained to care anymore. Did however achieve finding the present.
Woke up sore again today, mostly the right wrist and fingers, though the right elbow and right side of my jaw's been working on getting sore the past few days too. Left hand fingers went today. Hello pain! I so enjoy your company.... Disorientation still present. Trouble focusing getting worse? Check. Emotional wreck? Yup. Roid rage? Kicking in and amping it up. Skin is itching like crazy! Just the past day or two, maybe three at most, I'm itching as though I've been attacked by a swarm of mozzies. No hives or anything, just itchy. And afterwards it's obvious where I've scratched, there's all these.... tiny blood blisters? I'm not sure, they fade and go away after a bit, and they're small, so I'm not hugely worried. Did read that I could bruise rather easy with the meds, and in all honesty they could just be tiny bruises. Which is still not pleasant, but hey. As long as they don't hurt, I'm not gonna complain too badly. Getting horribly hungry all the time, and craving random crap, like ice cream. Don't get me wrong, ice cream is awesome, I just never crave it and it's rarely in the house. And I wasn't even hungry at the time! I just felt as though I needed that temperature and texture in my mouth. Drove myself slowly insane with that until I had a glass of apple juice, followed by a hot bread roll with butter, followed by a glass of milk. Made me feel slightly better, but then had stomach pain and spent a while trying to get comfy with that. Bah humbug with cravings!
One thing I have noticed, my psoraisis is getting better. I've had it since I was nine, so for twelve odd years now. Started with just one or two patches on my scalp and has since spread to the rest of my scalp, back of neck, behind my ears, on my eyelid, under my arms, near my belly button, my legs, my feet and my ankle, and occasionally on my hands. Read somewhere that sometimes it can be linked with Crohn's, and it has faded dramatically, not bright red anymore, just looks like faded scars, and it's definitely not oozing or bleeding or stinging like it used to. Mayhaps the steroids are good for something? Can't believe I just said that......
Do not enjoy the enemas. Thought the stomach pain could be because I was having them just after dinner, so am now having them before dinner. Pain still happens, but is admittedly not hanging around as long. Is possibly easier to deal with then too because despite being somewhat dead to the world, I'm not as exhausted as I am after dinner. I think tiredness plays a lot into pain/discomfort levels and my tolerance of things. I'm not very tolerant of things I don't like. Mind, first box of these enema things is now empty. Toying with whether to throw it away, or save them all up and throw them at the doctor (they're lightweight cardboard, they wouldn't hurt him, I just really don't like them).
And I really hope you enjoyed this post because I thought I'd just lost everything I'd typed. Over and out and goodnight.
Woke up sore again today, mostly the right wrist and fingers, though the right elbow and right side of my jaw's been working on getting sore the past few days too. Left hand fingers went today. Hello pain! I so enjoy your company.... Disorientation still present. Trouble focusing getting worse? Check. Emotional wreck? Yup. Roid rage? Kicking in and amping it up. Skin is itching like crazy! Just the past day or two, maybe three at most, I'm itching as though I've been attacked by a swarm of mozzies. No hives or anything, just itchy. And afterwards it's obvious where I've scratched, there's all these.... tiny blood blisters? I'm not sure, they fade and go away after a bit, and they're small, so I'm not hugely worried. Did read that I could bruise rather easy with the meds, and in all honesty they could just be tiny bruises. Which is still not pleasant, but hey. As long as they don't hurt, I'm not gonna complain too badly. Getting horribly hungry all the time, and craving random crap, like ice cream. Don't get me wrong, ice cream is awesome, I just never crave it and it's rarely in the house. And I wasn't even hungry at the time! I just felt as though I needed that temperature and texture in my mouth. Drove myself slowly insane with that until I had a glass of apple juice, followed by a hot bread roll with butter, followed by a glass of milk. Made me feel slightly better, but then had stomach pain and spent a while trying to get comfy with that. Bah humbug with cravings!
One thing I have noticed, my psoraisis is getting better. I've had it since I was nine, so for twelve odd years now. Started with just one or two patches on my scalp and has since spread to the rest of my scalp, back of neck, behind my ears, on my eyelid, under my arms, near my belly button, my legs, my feet and my ankle, and occasionally on my hands. Read somewhere that sometimes it can be linked with Crohn's, and it has faded dramatically, not bright red anymore, just looks like faded scars, and it's definitely not oozing or bleeding or stinging like it used to. Mayhaps the steroids are good for something? Can't believe I just said that......
Do not enjoy the enemas. Thought the stomach pain could be because I was having them just after dinner, so am now having them before dinner. Pain still happens, but is admittedly not hanging around as long. Is possibly easier to deal with then too because despite being somewhat dead to the world, I'm not as exhausted as I am after dinner. I think tiredness plays a lot into pain/discomfort levels and my tolerance of things. I'm not very tolerant of things I don't like. Mind, first box of these enema things is now empty. Toying with whether to throw it away, or save them all up and throw them at the doctor (they're lightweight cardboard, they wouldn't hurt him, I just really don't like them).
And I really hope you enjoyed this post because I thought I'd just lost everything I'd typed. Over and out and goodnight.
Saturday, April 4, 2009
Crohn's? I feel like an old Crone!
So I guess I covered a bit yesterday huh. Don't usually write that much in a blog. One thing I think I failed somewhat on is what the hell Crohn's is. I mean sure, I linked to a few pages, but that's all technical gabble and stuff. So, my summary of Crohn's and how I interpret it is as follows:
Crohn's is a cronic, incurable albeit treatable, autoimmune disease in which it appears the immune system attacks the intestines or some bacteria within them causing inflamation and ulcers. The inflamation can inhibit absorbtion of vitamins and minerals, as well as fluids, and the ulcers can bleed. People with Crohn's can become anaemic and also lack other important vitamins.
Hopefully that sums it up for anyone who reads.
As for why I'm doing this blog, as I mentioned yesterday it may help maintain some normality in my life, but one day it may also be of some help to others who are diagnosed. At the moment I'm really struggling to come to terms with it and what it means for the rest of my life. Not to mention a lot of what I've read and the experiences I'm already having with the meds are scaring the life out of me.
I'm wanting to link to this blog from a few places but in a way I'm worried about it. There's a lot of info I'm putting in here and not holding back on and I'm thinking that if I know my friends read it then I'll be more hesitant in what I write. I don't talk about emotions well, and at the moment I can pretend that no one reads this and that I'm just typing, not talking. Heck, even if people leave comments asking questions I can just pretend I'm reading a book to them and try to answer the best I can. It's just knowing that people may treat me differently or take pity on me that makes me shudder. I don't want pity. I just want to share what's going on and be able to do so in a way that I'm comfortable with.
To my friends, I love you all dearly, but if you leave any comments here in the form of "OMG, are you okay, can I give you a hug?" I believe I may have to get some cranky on your butts. Sure, ask away about stuff, but I'm still me. Independant and proud. Give me a hug if you think I need it, but don't throw sympathy at me. I don't want it.
Anyway. Spent last night tossing and turning, waking up every hour or two. Thank the gods it's the weekend. Woke up this morning with my right wrist and fingers aching. Seriously, every single joint in my right hand just gone. Which is an incredible pain in the butt considering I'm right handed. Go to write, struggle. Go to draw, struggle. Go to crochet or knit or take photos, struggle. *sigh* Also have massive big black bags under my eyes.
Was pleased to note last night before bed though that despite feeling incredibly fat and bloated already, the muscles that I've been attempting to work on for the past few months haven't disappeared as yet. There's still hope! Maybe....
Tired. So, so tired. At least today I can curl up in a corner if I want to and sleep and not worry about my job.
Anyway. Coherant blather is going out the window, so I think I'll leave today's update as is. Will try and update daily, though it could be as little as weekly that I actually get to it.
Crohn's is a cronic, incurable albeit treatable, autoimmune disease in which it appears the immune system attacks the intestines or some bacteria within them causing inflamation and ulcers. The inflamation can inhibit absorbtion of vitamins and minerals, as well as fluids, and the ulcers can bleed. People with Crohn's can become anaemic and also lack other important vitamins.
Hopefully that sums it up for anyone who reads.
As for why I'm doing this blog, as I mentioned yesterday it may help maintain some normality in my life, but one day it may also be of some help to others who are diagnosed. At the moment I'm really struggling to come to terms with it and what it means for the rest of my life. Not to mention a lot of what I've read and the experiences I'm already having with the meds are scaring the life out of me.
I'm wanting to link to this blog from a few places but in a way I'm worried about it. There's a lot of info I'm putting in here and not holding back on and I'm thinking that if I know my friends read it then I'll be more hesitant in what I write. I don't talk about emotions well, and at the moment I can pretend that no one reads this and that I'm just typing, not talking. Heck, even if people leave comments asking questions I can just pretend I'm reading a book to them and try to answer the best I can. It's just knowing that people may treat me differently or take pity on me that makes me shudder. I don't want pity. I just want to share what's going on and be able to do so in a way that I'm comfortable with.
To my friends, I love you all dearly, but if you leave any comments here in the form of "OMG, are you okay, can I give you a hug?" I believe I may have to get some cranky on your butts. Sure, ask away about stuff, but I'm still me. Independant and proud. Give me a hug if you think I need it, but don't throw sympathy at me. I don't want it.
Anyway. Spent last night tossing and turning, waking up every hour or two. Thank the gods it's the weekend. Woke up this morning with my right wrist and fingers aching. Seriously, every single joint in my right hand just gone. Which is an incredible pain in the butt considering I'm right handed. Go to write, struggle. Go to draw, struggle. Go to crochet or knit or take photos, struggle. *sigh* Also have massive big black bags under my eyes.
Was pleased to note last night before bed though that despite feeling incredibly fat and bloated already, the muscles that I've been attempting to work on for the past few months haven't disappeared as yet. There's still hope! Maybe....
Tired. So, so tired. At least today I can curl up in a corner if I want to and sleep and not worry about my job.
Anyway. Coherant blather is going out the window, so I think I'll leave today's update as is. Will try and update daily, though it could be as little as weekly that I actually get to it.
Friday, April 3, 2009
I think I can safely say that pooh occurs.
So. This is me attempting (probably in vain) to bring some normality back into my life.
Two weeks ago on the 20th March 2009 I finished work and wandered off to see the gastroenterologist (major achievement for me because that word is huuuuge). I'd been suffering abdominal and back pain, as well as diarrhoea since mid July 2008, and when the blood started appearing I'd finally had enough, so the GP sent me to see this bloke.
Wasn't so fun. Had to go through the personal and family medical history, strip so he could poke at my stomach, and then be told I needed to go and get needles jabbed in me to collect blood, and collect a pile of poop, and take a day off work on Monday (still on three month probation cause it's a new one) to go into hospital, be knocked unconscious and have things shoved up my butt and down my throat.
Oh yeah, and I had to stick to a diet over the weekend which involved very limited foods on the Saturday (plus approved clear fluids), then on Sunday only the delightful approved clear fluids, and then I got the joy of having to consume three doses of stuff that made me poop tap water for the whole smegging night (seriously, tap water's not quite right. Tap water has a thicker consistency than what came out my butt that night).
Weekend saw me become grumpier and grumpier and more and more miserable. Hate needles, so the blood tests weren't so fun (and plus I had to wake up early for them). Then came the gathering of the poop. While I knew my poop wasn't perfect (face it, who's is?), it was still rather upsetting to actually see it. Slime, vaguely tinted brown, with a dollop of blood for good measure(hey, the description of this blog does say the good, the bad and the ugly). Spent two or three hours straight on the loo on Sunday night, pooping tap water and reading, not even clear fluids from midnight.
Monday morning rocked around and off to the hospital to have my dignity removed. Sat around for a while waiting in nothing but a hospital gown. Tired, hungry, sore, coming down with a cold was all making me grumpy enough. I think I started snapping at people about this point. Needle shoved in vein eventually to get some fluids back into me, but first, here, have this, you'll be light headed. Remember nothing until waking up and noting my fingernails were a delightful shade of dark blue. Took a few hours to get back to normal. That night for dinner, the best roast chook, mashed spud, carrot and beans that I can ever remember having.
Last Friday, 27 March was Show Holiday were I am, so got the day off work and got paid for it. Went to see the gastro person for a follow up appointment.
Guess what? You've got Crohn's.
So. My treatment (at present) involves:
- 1 x 25mg tablet of prednisone in the morning
- 3 x 5mg tablets of prednisone in the morning
- 2 Salofalk tablets (currently both morning and night, so 4 all up, soon to go up to a total of 6)
- An oh so delightful and dignifying prednisone enema every night.
Gastro person is away, from last Friday, for three weeks conference leave. Not so happy about this. See, went to get scripts filled on the Friday, no probs bar for the enemas which weren't in. Got home on Monday and my mother had gone and got them for me. I was expecting something smaller. And I was meant to go out for dinner with friends that night too, but had the lovely task of trying to get my head around how the feck that much stuff was going to go the wrong way up my butt and stay there. Worked myself into enough of a state quick enough that I just didn't bother with dinner.
Tablets don't seem to be a prob for now*, however the enemas are still not so good. See, they're 100ml (20ml of prednisone in that), and you're meant to somehow get all of that into your butt, lay on your stomach for 5 minutes, then go to sleep in any comfortable position. By the time half of that stuff has gone in, I'm getting rather bad stomach pains. Soldier on, and spend time laying on my stomach reading. Why not sleep? My butt does this wonderful.... how to describe it? Tug-o-war almost? It tries to squeeze out the stuff that's not meant to be in there and is making it uncomfortable, then quickly goes 'No! Wait! That's got to stay there!', or it feels like the diarrhoea it's so used to, so it tries to squeeze it back in. NOT FUN! So it happens with an hour or so before I'd normally go to sleep, but when you need to fart (yes I will be uncouth and use that word) and you're in that much discomfort and pain, it doesn't even stay in that long and you do wonder if it's worth it and how much good that tiny little bit of time is doing. So you see, the doc being away isn't so much fun because a/ he didn't give me any instructions on how to do the thing, but b/ didn't tell me what it would be like or what to do should I have any problems while he's away.
*Doctor also failed to tell me most of the side effects of the meds I'm on. He said I'd get more pimples and would end up moon faced (rather round in the face). He neglected to mention the following:
- Extreme tiredness
- Insomnia, despite above extreme tiredness
- Lack of coordination - seriously, it's taking forever to type this. I go to hit what I know are the right keys but then random nonsense appears on the screen. V. frustrating.
- Difficulty in focusing - takes a while to focus on anything, really shouldn't be driving, but hey.
- Major temp differences. I go from freezing cold one second and craving a few blankets and a hot water bottle, to drowning in sweat and near needing a change of clothes from it. And there'll be no change in the air temp around me, or in my current activity.
- Moods that aren't my own - I went shopping yesterday arfternoon and spent the entire time getting more and more worked up, became convinced rather quickly that anyone and everyone was trying to steal stuff out of my bag, or put things in my bag to frame me, or (better yet) were sidling up to me in order to molest me. Then just got to the point where I couldn't stand being around people and got scared and couldn't breathe. Got to the car and cried. This is not me. I am a confident person most of the time, and the knowledge that I can sit there and go 'hang on, this isn't me', yet not do anything about it is rather upsetting.
- Dizziness and disorientation, which add to making crowds oh so pleasing.
- Extremo with the hunger. I hate it, because I know what I eat already is too much, but I get so damn hungry with the meds that I continually find myself looking for more food. Hate for it!!!
All this and I've only been on the meds a week. I can also expect to look forward to:
- Weight gain everywhere else, and from what I've read of others' blogs, it won't just be a small amount.
- Roid rage (Prednisone is a steroid). May already be experiencing this to a certain degree.
- Pain in my joints.
There's other stuff there too with side effects I could experience. I'll throw a few links below in this post on various things (Crohn's, meds, etc) so that I don't have to retype entire Wiki articles.
Righteo. That's the past few weeks summed up. Now for a here and now update. I'm at work. I'm tired as. I'm sweating. My fingers are sore. I have a twitch under my left eye which is driving me insane (coincidently, it appeared a few months before the HSC then went away afterwards, it's come back again occasionally during times of stress, and funilly enough, it's come back since the diagnosis). I'm a little on the miserable side, mistyping things for work isn't making it easy. I'd actually really like to curl up in the corner behind my chair and go to sleep. Either that, or go home and do the same in bed.
Now for those links.
Wiki on Crohn's
http://en.wikipedia.org/wiki/Crohn%27s_disease
Wiki on Prednisone
http://en.wikipedia.org/wiki/Prednisone
Wiki on Mesalazine (Salofalk)
http://en.wikipedia.org/wiki/Salofalk
Crohn's and Colitis Australia
http://www.acca.net.au/
Lauren Nastasi on Crazy Sexy Life
http://crazysexylife.com/2009/life-with-crohns/
Two weeks ago on the 20th March 2009 I finished work and wandered off to see the gastroenterologist (major achievement for me because that word is huuuuge). I'd been suffering abdominal and back pain, as well as diarrhoea since mid July 2008, and when the blood started appearing I'd finally had enough, so the GP sent me to see this bloke.
Wasn't so fun. Had to go through the personal and family medical history, strip so he could poke at my stomach, and then be told I needed to go and get needles jabbed in me to collect blood, and collect a pile of poop, and take a day off work on Monday (still on three month probation cause it's a new one) to go into hospital, be knocked unconscious and have things shoved up my butt and down my throat.
Oh yeah, and I had to stick to a diet over the weekend which involved very limited foods on the Saturday (plus approved clear fluids), then on Sunday only the delightful approved clear fluids, and then I got the joy of having to consume three doses of stuff that made me poop tap water for the whole smegging night (seriously, tap water's not quite right. Tap water has a thicker consistency than what came out my butt that night).
Weekend saw me become grumpier and grumpier and more and more miserable. Hate needles, so the blood tests weren't so fun (and plus I had to wake up early for them). Then came the gathering of the poop. While I knew my poop wasn't perfect (face it, who's is?), it was still rather upsetting to actually see it. Slime, vaguely tinted brown, with a dollop of blood for good measure(hey, the description of this blog does say the good, the bad and the ugly). Spent two or three hours straight on the loo on Sunday night, pooping tap water and reading, not even clear fluids from midnight.
Monday morning rocked around and off to the hospital to have my dignity removed. Sat around for a while waiting in nothing but a hospital gown. Tired, hungry, sore, coming down with a cold was all making me grumpy enough. I think I started snapping at people about this point. Needle shoved in vein eventually to get some fluids back into me, but first, here, have this, you'll be light headed. Remember nothing until waking up and noting my fingernails were a delightful shade of dark blue. Took a few hours to get back to normal. That night for dinner, the best roast chook, mashed spud, carrot and beans that I can ever remember having.
Last Friday, 27 March was Show Holiday were I am, so got the day off work and got paid for it. Went to see the gastro person for a follow up appointment.
Guess what? You've got Crohn's.
So. My treatment (at present) involves:
- 1 x 25mg tablet of prednisone in the morning
- 3 x 5mg tablets of prednisone in the morning
- 2 Salofalk tablets (currently both morning and night, so 4 all up, soon to go up to a total of 6)
- An oh so delightful and dignifying prednisone enema every night.
Gastro person is away, from last Friday, for three weeks conference leave. Not so happy about this. See, went to get scripts filled on the Friday, no probs bar for the enemas which weren't in. Got home on Monday and my mother had gone and got them for me. I was expecting something smaller. And I was meant to go out for dinner with friends that night too, but had the lovely task of trying to get my head around how the feck that much stuff was going to go the wrong way up my butt and stay there. Worked myself into enough of a state quick enough that I just didn't bother with dinner.
Tablets don't seem to be a prob for now*, however the enemas are still not so good. See, they're 100ml (20ml of prednisone in that), and you're meant to somehow get all of that into your butt, lay on your stomach for 5 minutes, then go to sleep in any comfortable position. By the time half of that stuff has gone in, I'm getting rather bad stomach pains. Soldier on, and spend time laying on my stomach reading. Why not sleep? My butt does this wonderful.... how to describe it? Tug-o-war almost? It tries to squeeze out the stuff that's not meant to be in there and is making it uncomfortable, then quickly goes 'No! Wait! That's got to stay there!', or it feels like the diarrhoea it's so used to, so it tries to squeeze it back in. NOT FUN! So it happens with an hour or so before I'd normally go to sleep, but when you need to fart (yes I will be uncouth and use that word) and you're in that much discomfort and pain, it doesn't even stay in that long and you do wonder if it's worth it and how much good that tiny little bit of time is doing. So you see, the doc being away isn't so much fun because a/ he didn't give me any instructions on how to do the thing, but b/ didn't tell me what it would be like or what to do should I have any problems while he's away.
*Doctor also failed to tell me most of the side effects of the meds I'm on. He said I'd get more pimples and would end up moon faced (rather round in the face). He neglected to mention the following:
- Extreme tiredness
- Insomnia, despite above extreme tiredness
- Lack of coordination - seriously, it's taking forever to type this. I go to hit what I know are the right keys but then random nonsense appears on the screen. V. frustrating.
- Difficulty in focusing - takes a while to focus on anything, really shouldn't be driving, but hey.
- Major temp differences. I go from freezing cold one second and craving a few blankets and a hot water bottle, to drowning in sweat and near needing a change of clothes from it. And there'll be no change in the air temp around me, or in my current activity.
- Moods that aren't my own - I went shopping yesterday arfternoon and spent the entire time getting more and more worked up, became convinced rather quickly that anyone and everyone was trying to steal stuff out of my bag, or put things in my bag to frame me, or (better yet) were sidling up to me in order to molest me. Then just got to the point where I couldn't stand being around people and got scared and couldn't breathe. Got to the car and cried. This is not me. I am a confident person most of the time, and the knowledge that I can sit there and go 'hang on, this isn't me', yet not do anything about it is rather upsetting.
- Dizziness and disorientation, which add to making crowds oh so pleasing.
- Extremo with the hunger. I hate it, because I know what I eat already is too much, but I get so damn hungry with the meds that I continually find myself looking for more food. Hate for it!!!
All this and I've only been on the meds a week. I can also expect to look forward to:
- Weight gain everywhere else, and from what I've read of others' blogs, it won't just be a small amount.
- Roid rage (Prednisone is a steroid). May already be experiencing this to a certain degree.
- Pain in my joints.
There's other stuff there too with side effects I could experience. I'll throw a few links below in this post on various things (Crohn's, meds, etc) so that I don't have to retype entire Wiki articles.
Righteo. That's the past few weeks summed up. Now for a here and now update. I'm at work. I'm tired as. I'm sweating. My fingers are sore. I have a twitch under my left eye which is driving me insane (coincidently, it appeared a few months before the HSC then went away afterwards, it's come back again occasionally during times of stress, and funilly enough, it's come back since the diagnosis). I'm a little on the miserable side, mistyping things for work isn't making it easy. I'd actually really like to curl up in the corner behind my chair and go to sleep. Either that, or go home and do the same in bed.
Now for those links.
Wiki on Crohn's
http://en.wikipedia.org/wiki/Crohn%27s_disease
Wiki on Prednisone
http://en.wikipedia.org/wiki/Prednisone
Wiki on Mesalazine (Salofalk)
http://en.wikipedia.org/wiki/Salofalk
Crohn's and Colitis Australia
http://www.acca.net.au/
Lauren Nastasi on Crazy Sexy Life
http://crazysexylife.com/2009/life-with-crohns/
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