Just an update

I ended up taking myself off the flagyl after all.  I was getting bad stomach pains and was over being sick all the time.  After a week off it I'm glad I did stop it, the nausea and vomiting has almost completely gone away, and I've managed to work the week (hooray for an income!).

I think today is day 14 of Prednisone (50mg), I can't quite remember now but give or take a day.  It's also day 4 of near migraine style headaches and extremely tight and sore jaws.  It feel like there is a vice just below my temples and it just keeps getting tighter.  The headache is all over, but mostly right in the middle of my forehead and temples.  

And I've now been back on Salofalk for 4 days now (the headaches and jaw pain started before I started the Salofalk).  So I'm now on pred (50mg), salofalk (2 tabs twice a day), and humira.  Still getting stomach pain, horrid diarrhoea, slime and blood.

Also very tired and starting to have trouble with sleep a little.  Heaps of hot flushes, though I'm over the moon that the munchies haven't kicked in yet.  I haven't really been paying attention to my weight, but I've not gone ape with food so hopefully things won't get too bad like last time.  I'm determined to turn the pred on it's head this time and lose weight rather than gain it.  My joints are starting to ache a little, I just hope they don't get too bad.

The doctor is hoping that the combination of pred and salofalk will kick the humira back in, but in all honestly he doesn't sound confident.  He mentioned the possibility of Infliximab infusions, and vaguely mentioned the possibility of surgery.  I think he's hoping something will work before it comes to cutting me open.  Fingers crossed hey?

I'm not dead in the water yet this time, but there's still the little voice in the back of my mind that sits there niggling, telling me it'll only be a matter of time before the meds turn it all ugly.  I think I'm finding it easier to stay strong this time around though, having the wonderful man in my life that I do gives me the most amazing boost.  He was aware from early on that I have the Crohn's and that it was treated with meds, but it's one thing to know that and another to experience someone flaring.  He's being such a strong person, and his support is priceless.  I asked him the other night what he thought when it all kicked back in, and was given an answer  of "it didn't really phase me".  I don't think I can convey exactly how much it means to me to have him here, all I can say is thankyou darling.  I love you.  <3 div="">

Logic occurs occasionally!

I haven't really said much of value lately, have I? Haven't really been feeling that fantastic either though, today's probably my first day of very vaguely normal headspace in a week or two.

Crohn's wise, I'm utterly over it. Fed up to the eyeballs and just want it to go the hell away. Still not quite comprehending the "This is the problem, there's no cure" thing, though now when those thoughts roll through my mind it genuinely feels as though I've smacked myself up against a brick wall, as opposed to the previous drowning in the middle of the ocean with nothing to grab on to. Still having shockers of days, just falling apart and struggling a lot in trying to pull myself back together.

Pain wise, I'm getting headaches every day which require pain meds. Also the apparently arthritic pain keeps rocking up, mostly in my finger, wrists, knee and hip. Am also getting abdominal pain every day, it's just a lottery as to whether it'll be there all day or whether it'll wait off until the evening, and also as to which specific point it'll be (I've worked out there's five places, and a combination of any or all of the above). Then there's the general tummy ache that's all over (much rarer than the abdo pain), and then there's the "I've been shitting liquid all day" tummy and back pain (so much fun, but at least rarer than the general tummy pain).

Side effects: Extremely tired. And I mean extremely. Suffer from chronic fatigue as a result of glandular fever/mono a few years back. Managed to get on top of that with Bowen therapy (seriously, a godsend, try it!), but now the fatigue is just as bad, if not worse (thanks Imuran!). Not to mention nausea and dizziness.

Also still getting funny vision/trouble focusing, the odd chest pain (pick a side), vagueness, the shakes, and random cramping sensations. Still phoning the doctor weekly to find out if the Imuran is killing my liver (it's not, and while I think of it I did get to yay about not having diabetes [go me!]), still getting weekly blood tests. Go to see doctor next Monday again. Bah humbug. Just more time, and more money that I've got to somehow find.

Food: Keeping up the dairy intake, particularly milk, seeing as it seems to be going okay with me (possibly giving me gas and a rumbly tummy, but not shooting straight through which is fantastic). I like my bones not breaking thanks! Quiche is going well, so one of those gets had of a morning as a rule. Oats are also awesome (when I'm not randomly dropping the bowl). Red Rooster sadly still remains the demon in disguise.

In completely different news. My fish are being fish (shock horror!). And are currently expecting me to feed them (I think!). I love my little black one! It's cute, and has boggly eyes. *cuteness goes here* There's still no kitten in my bottom drawer, and sadly the two at the pet shop were sold on the weekend so there goes getting one of them and putting it in there. :P

I am in possession of my Firefly dvds again, so I'm back to getting my kicks from that. Also going through many of the books that I've started reading then stopped and am getting time to read them. My evenings exist of getting home, having a drink, having dinner, going to bed and reading for half hour or so, clonking out stone cold/thrashing and crashing for hours until I fall into a fitful sleep (the meds like to vary it for me :S). I'm such a boring person.

That's the spirit!

"Do not go gentle into that good night" - Dylan Thomas

Used to live by that. Recent events have seen me forget it. Then I remembered it again. This isn't me. This disease, the meds, the symptoms, the side effects. They aren't me. They are not even the new me. I like the old me. I didn't give it permission to run away and leave me alone to deal with this. I didn't give this disease permission to take over my body. So it can feck the hell off. Right now. It can go away and let me be me.

I will exercise. I will lose weight. I will be fit.
I will enjoy going shopping.
I will enjoy eating food worry-free.
I will be pain-free.
I will be independent.
I will be happy.
I will be strong.
I will be me.


Meanwhile. Have the shakes, have done pretty much continually for the last 24 hours. Couldn't serve up the vegies last night because they kept falling off the serving spoon I was shaking enough. Still there when I woke up this morning.

Also, rather bad headaches. Can't tell if they're from the meds, from the cold I've got, or if they're the headaches I get for a few days/weeks before I get cluster headaches (yep, I get the joy of them among other things). Muddling through with pain killers, although yesterday thought I'd see how it went (if it would go away after awhile on it's own or not). Bad choice, doped myself up when I got home from work and tried to deal.

Rather a bit more tired than usual, but I'm awake (ish) and alive, so shouldn't complain too much. And besides, my job doesn't require me to be awake as such in order to do it properly, just pretend good enough and get the work done properly and it's all fine.

Have a friend's 21st to go to this weekend, we're booked in at an Indian restaurant. I love spicy things, and I've heard it's nice. Here's to hoping things sit well. Then the weekend after I've got another friend's birthday and we're headed for a Thai restaurant. Again, love the stuff, just hoping it goes well. Birthdays and stomach wise. :)

Also aiming to take the folks to a pub for dinner this weekend. Really nice food for (in my opinion) very good prices, particularly for the size of the meal. Hoping I'm awake enough/don't have a headache. Also hoping the meal sits well there too.

Grapes are definitely a no go. Peanuts, possibly sit alright. Quiche is a God. Seriously.

Have began considering the rental market. Was/am a very proud creature, and previously have not wanted to rent as I see no point in paying off someone else's property when I own none. My pride just wouldn't let me do it. It would sit there going "No! You will save money and get your own place!" and I'd just agree with it. After all, I do want my own place. But with the old hag, the pride hasn't so much disappeared, it's just been battered and bruised into submission. This is a good thing! It means while it's being quiet and sulking in a corner, the rest of me can pounce and take control and get out of my folks' hair. And piece together my sanity again! :D Also figure that with the extra stuff I'd be doing (ie, cooking, cleaning, etc) I wouldn't have time to let things play on my mind and send me into a tail spin. So basically, independence, freedom, and maintaining my sanity/mental health all in one. Yay! Now, to find that rental property.....

Mum bought me a mug yesterday. One of the knitting ones that I like. I got one in the series a while ago, but they're clearing them now, and mum was in the shop and bought one for me. It's now sitting next to the work computer with the very cold remnants of this morning's chai tea in it.

I bought mum and dad a present yesterday too, a bottle of Red TR2. Rather nice wine that they both like. To say thanks for everything, and sorry for the shite (pardon the pun).

And I've noticed recently I tend to be using this as a blog for almost everything as opposed to just the Crohn's. *shrugs* Eh. Guess you can't separate it from everything afterall.

No meows.

I swear, doctors are evil. Evil I tell you!

Went home early from work yesterday. Just couldn't cope. In pain, shaking, temperature changes, tired, head in a mess. Not conductive for the work environment.

Mum went with me to see the evil doctor person. Which was good in a way because everything absorbed while I was in there then vacated my head afterwards. Bad in another way because the doc talked to her, not me. Get to see him again in four weeks.

So. The good news is I don't have to have the enemas any more. This came about from me going "Pretty please, a thousand times, with a cherry and sugar on top, can I please not have the enemas anymore?". And yes I did use those words. It was that or demand it and I thought maybe a cherry would be nicer than demanding. Also, my inflamation markers were back down to well within normal range or nearly normal (instead of waaaaaaaaay up high in the sky).

The annoying news is that he batted every single side effect (or at least what has been happening to me since I started the meds) down with either a "Yeah, that happens with Prednisone" or a "That's not related to your meds" then promptly ignoring it. The chest pain? Not related to my meds so doesn't bother him. Still bothers me.

The bad news (at least in my eyes). I get to stay on the Prednisone, same amount, no backing me off. And I get to stay on the Salofalk (not such a biggy, but really, I'm not sure what it's doing for me). And he's starting me on Imuran. Mum's getting the script filled for me today. I get to have weekly blood tests with this one, so I'm guessing I need to harden up and get over that fear of needles just a little bit. If the Presnisone and Imuran don't work, I get to look at a fortnightly injection of something (think it's Humira, could be something else though). My iron is still low (though still not anaemic, so that's good) and he was going to put me on iron tablets too, but didn't want me starting two new meds at the same time.

In other fantastic news, the joint pain is apparently not caused by the meds, infact the meds should make it better. Ignore that fact that most of it started after I started taking the meds. So it sounds like I've got the delightful arthritis that comes with Crohn's. I'm also the heaviest I've ever been, despite 5 weeks ago being the lightest I'd been in two years. And! The blurry vision? Someone forgot to mention to me that if you're predisposed to diabetes then Prednisone can start the ball rolling. Blurry vision can be a sign of diabetes. So guess who gets to have her sugars checked? As if one incurable chronic disease wasn't enough.

Slept a little better than usual last night, although woke up about quarter to six to a massive painful cramp in my left leg. So it's still aching from that, and currently my right one feels like it's going to go. I'm tired, and my vision is having fun with me, and my fingers hurt.

In relation to the weight gain, it's a problem. Double chin is now very noticeable (if it wasn't before). Work clothes are also an issue. See, the shirts I wear are the presentable office type ones, with the buttons down the front. Noticed after I got to work today that the shirt I'm wearing today in particular, decides to open between the buttons. Not a good look. So I now face the prospect of going and trying to find shirts that fit and look decent. Sadly, the style and brand I wear now, I know looks alright when I'm five kilos lighter, but sadly it's the biggest size in that style and brand. So I've got the horrible task (and yes it's horrible, I despise it with a passion) of hunting for a whole new work wardrobe. Yuck. Time wasting, expensive, stressful, pointless exercise. Hate.

Room needs doing. Cleaning, rearranging, etc. Too small. Need space. Unfortunately, the only other room in the house that is a possibility isn't a possibility, it's a glorified walk way. So I get to either clean the room, rent, or save and buy. For now, cleaning the room out sounds better. And cheaper. Bah. It's still a teeny room.

Anyway. Off to try and muddle my way through the day. Blergh.

Superglue for my headspace please.

So I've had a wonderful few days. Sarcasm ends right here. My headspace since maybe bedtime Thursday/early Friday morning has been not so good, to put it very lightly. Random breakdowns, bawling my eyes out, getting angry then getting upset because I got angry, then getting angry because I was upset, and so it went in a vicious cycle all weekend.

Also got a medical bill that despite having top cover private health insurance and despite Medicare covering a fair whack of the bill, I'm still out of pocket quite a considerable amount. And considering that was for the tests where I had to be unconscious and have things shoved up my butt and down my throat, it only adds insult to injury.

Felt vaguely better yesterday, though today started at the bottom of the hill and somehow I've just kept digging. Not feeling in such a happy place at the moment.

Get to see the gastro doctor person this afternoon after work. Mum's coming with me this time. Think that will be good. Need someone there with the state of mind I'm in.

Refused the enema on Sunday. Just to the point where I can't deal with them. Put up with it yesterday, will demand to be taken off them today, along with having the Pred knocked back a bit. I know this will anger people a little, but you can function (albeit not very well) with a bag hanging out of your belly and no bowel. You can't function without a brain, and at the moment, the meds are doing my head in and I'm not coping.

Side effects are really getting me down.

Shouldn't be driving due to vision randomly going blurry, and focusing is a problem causing hurt and needing eyes to be closed for a while. Chest pain that comes and goes randomly but is never minor should deem me unable to drive too. Unfortunately, if I want money to pay for the meds that cause all these side effects, I need to be able to drive in order to get to work in order to get said money.

Just for my benefit, a list of current side effects is as follows.

-Blurry vision.
-Focusing issues - unable to focus, pain when focusing
-Chest pain
-Messages not getting from brain to mouth/hands - gibberish
-Joint pain - wrists, fingers, thumbs, shoulders, elbows, back, HIPS!!!, knees, toes, ankle
-Tummy pain, almost continual
-Cramping in feet
-Continual on verge of cramping in lower legs
-Insomnia - before bed, waking up at 11, 12:30, 2:30, 4, 5:20, or waking up and not getting back to sleep
-Exhaustion
-Lots of cranky
-Lots of sad
-Lots of scared
-Paranoia
-Fat
-Blackheads, pimples, cold sores
-Sweating, hot, cold
-Hungry
-Wounds not healing/staying infected
-Bruising

Enema stuff
-Always discomfort
-Causes diarrhoea for a while afterwards (upsetting/distressing when I've had a good day)
-Sometimes pain that stops to "do not poop" messages
-Tug-of-war issue, so no comfortable position to sleep in

Coherancy is out the window. Apologies. Meanwhile, my boss tells me nicely that dying is not allowed. Must look miserable for a joke to be made. Feel miserable. Can't type, can't see, spiralling. It's not fun when my mind goes like this.

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

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. :)

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.

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!

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*

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.

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.

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/