I'm a real girl!

Yup. Pinocchio voice and all while I'm saying that. Had my first lot of Humira today. All four injections. I gave three of them to myself!!!! Trust me, when you realise how terrified of needles I am, you will understand that the exclamation marks are necessary.

The three that went in my gut surprised me. I had a good howl and sob prior to the first one, dried my eyes, and then went, huh? Is that it? Didn't feel the first bit of the needle, and it's more just a pinching feeling (and even then not bad) towards the end of the needle. Finally, I approve of my belly fat. As a matter of fact, I've found a newly discovered love for it. Then the one in the leg. In a movie, a reversing truck would have been conveniently placed at this part. NEVER AGAIN! I do have lovely flabby, wobbly legs, but clearly I must have found the one spot that didn't have the cotton wool protection of flubber. It hurt, I cried. I highly recommend the stomach. Feeling slightly nauseous a few hours after, took a maxalon left over from the 6mp fiasco and seem fine with it now. No itching, redness, soreness what so ever.

In other news my darling black moor gave up the ghost on Sunday morning. Thursday night he was black and scaley, by Friday morning he was white and fuzzy, particularly near his head. Dad finally decided on Sunday that I'm permitted to get a larger tank. This morning (Tuesday), I notice Fatty is looking slightly less calico and slightly more white and fuzzy, particularly around the head. Have everything crossed, but seeing as the moor didn't respond to medication in the iso tank, I'm not holding my breath. Also, I know most people are thinking 'Who cares, they're just fish'. I love animals, and would love to have a cat or dog or multiples of each. My dad isn't so much an animal person (see: views them as a waste of time/money/space), so to me, my fish have become something like surrogate cats and dogs. Rather attached, so it kinda hurts when I'm unable to look after them properly due to unfair restraints.

Anyway, otherwise life isn't too bad. Still absolutely dead on my feet, and the joints are still sore, but fingers crossed things will improve with the Humira.

Hope everyone is well.

All aboard the Humira train!

Not dead! Promise.

Managed to poop in a jar. Still don't know the results of that. And had the ultrasound thing done. Ultrasound shows everything in the upper abdo to be normal. Blood tests? Thing that's meant to be under 6 is back down to 9. From 179 a week before (a few days after the oh-Gods-I'm-dying pain originally kicked in).

In other good news? Humira! Yay! The dumbass government finally decided that seeing as I couldn't keep food down (or brush my teeth properly without heaving) and had what was a very good dopelganger for pancreatitis with the 6mp, that they'll let me go on Humira. Scraipt is apparently in the mail on the way to the GIs and hopefully I'll be starting it soon after that.

Downside? Doc is insisting that I get taught how to use it by nurses at the hospital my brother died in. Considering I've been told that any chemist/pharmacist with half a brain is capable of showing me how to use it, I'm rather tetchy with the doc over this. He just would not budge on it, even when he knew the reason why. Eh. Shit happens I s'pose.

Still fatigued a fair bit/normal for me, and the joints are still twinging, but fingers crossed (everything crossed really) that the Humira will help that too.

Bring on the world! I'll be human again! :D

So after various appointments with the doc and multiple blood tests, he's come to the conclusion that I don't have pancreatitis. Thank the gods for small mercies. Pain had pretty much gone since stopping the meds, but the nausea is still there to a certain degree. Am managing food, but still feel rather off, even after the maxalon. Have to get antoher ultrasound done on Monday morning, which means more time off work, just to confirm that it isn't pancreatitis, even though he's already decided it isn't. Then have to go get yet more blood tests (will be the fourth lot in a week) and poop in a jar to rule out infection. Downside to that is I'm still having the varying swings between constipation and diarrhoea. Fingers crossed I can poop on cue hey?

Very worried about work. Doctor ordered me off work last week, and as I'm a temp/on a contract I had to ring in every day (not to mention not get paid for it). By Friday the boss seemed a little bit on the cold side. Doc seemed to be about to order me off work for the coming week too, until I told him I'd probably lose my job if he did that. Still seems rather not happy with the idea of me being at work, but what can I do about it? It's work now and maybe save my job, or not work now and possibly not work for quite some time, and with no savings, that's just not an option.

Oh, also was mentioned that the doc will try again for Humira seeing as the 6mp failed. Theoretically they can't turn me down, but we'll see. It is the government after all.

Anyway, I'm off to find my anti-spew drugs in an attempt to shut my stomach up. Hope everyone is well.

Quick update

Saw GI. Took me off both 6mp and Salofalk. Now on no meds for the Crohn's. Feels very strange. Has given me the week off work (which is good in the respect of needing to rest, but not so much in the not being paid respect), and given me endone for the pain anf maxalon for the nausea. Sent me to get blood tests today because he thinks it could be Pancreatitis. Will find out later today or sometime tomorrow what the results are.

Right now, tired as buggery, slightly dizzy, and two hours after taking the maxalon it doesn't really appear to be working. Off to bed for the day.

Hope everyone else is of better health and those that have had troubles lately I really hope things are starting to look up for you.

Yep. OJ definitely better the first time.

Managed to drag myself in to work today, though only for a few hours. The back and the pain just below the ribs was really playing up, difficult to move, difficult to walk, hurts to breathe..... Then there's the nausea. While I have no idea what's causing the other random pains, I'm fairly sure the nausea is a result of the 6mp. Spent a while dry retching this morning at work, which the boss commented on when I asked if I could come home. He also seems understanding of the meds, which is great. I believe his wife has some sort of arthritis and she's had the fun of all the hoops to jump through too.

Have had my weekly blood tests done, mum drove me, and have had everything that was in my stomach (ie one glass of oj) come back up. It's not often I have stuff come up, normally I just spend the day running and dry retching, which is actually possibly worse, but yeah. Just feeling very rotten with it all.

Had a red bull this morning. Promptly started falling asleep. Some sort of indication that I'm tired perhaps?

Managed to make an appointment to see the GI tomorrow arvo, so hopefully he'll have some idea as to what's wrong and even more hopefully, how to fix it.

Upside to all of this? ..... Actually still trying to work that one out. Will let you know when I've figured it out.

Don't feel as though I've whinged as bad as usual today. Feels good.

It's a small world after all.....

Yep, just had to go and implant that in your brains.

Meanwhile, yes, a small world, a small world of pain that is. To my recent memory (that is the past few months) I have had one weekend (read three days) where my pain was tolerable, even to the point of being gone. I went away that weekend. It was cold. Like -4 degrees C cold. I skipped. I jumped on the crunchy frosted leaves.  I ate food that I just plain should not have gone near. I rather liked that weekend.

Now that I'm not in the wonderful cold land where my pain seems to disappear (Canberra, I do so love it, will move there one day), my pain is back. Joint pain is there. Normal Crohn's pain is there. Random pain just below the middle of my ribcage that feels as though Wolverine has decided to punch me repeatedly is there, blades and all. And now I have this delightful back pain that I have no idea what I did to cause it. All I know is it's causing me to wake up in pure agony of a night bawling my eyes out. Hurts somewhat worse than it did when I spent the night in hospital after a car crash. Hurts to breathe.

But you know what? I get to just shut up and deal with it. I've had people pull up extremely short of calling me a hypochondriac, and the same said people pull up again extremely short of telling me I'm a nutcase and it's all in my head. I've also been told to stop taking so many pain killers (Note, taking no more than the max daily recommended).

Also been knocked back for Humira. Long story short, random doctors lied to me (what a surprise), and the Government has delightful double standards. Eg recognising something as a side effect, acknowledging it as a reason to stop taking it if it was prescribed for illness A, but not if it was prescribed for illness B. Have been put on 6mp, and have watched it increase the diarrhoea, possibly increase all that wonderful chest pain, and it's possibly causing the wonderful nausea that I've had that keeps getting worse. Can't brush my teeth or swallow tablets without throwing up. Then again, the nausea could just be from the cold that I've managed to pick up somewhere.

Dear world: Had enough, fuck you.

Dear Old Hag, please go away.

Ah life.  Where would we be without it apart from enjoying ourselves?

Ahem.  I believe I left you just before I started pooping green waterfalls, so I will take it from there.  Spent the evening pooping green waterfalls and was nill by mouth from midnight until the time of my being knocked unconscious and having things shoved in places they should not be shoved.  I had been told to present to the hospital at 9:30 (despite the doc telling me to arrange a time sometime between 7 and 9), and had been booked in for a 10 am time slot.  At about quarter to one a somewhat tired, cold, hungry, thirsty, contankerous and downright unbearable me was finally knocked out.  Usually scenario of farting like a hippo upon waking up in recovery before being wheeled out into the post recovery area to be treated to sprite and sandwiches.  Made from bread.  Made from wheat.  :/  The sprite admittedly was very good.  The sandwiches remained in their packaging.  Also adding to the usual scenario while in recovery was the doctor coming around and talking to me the moment my eyes had fluttered open (and then promptly closed again) under the assumption that open eyes equates to consciousness.  Hate to tell them, but it really doesn't.  Was driven home by mum, ate a rissole and watched Sherlock Holmes (which actually wasn't quite so bad).

Spent a few days afterwards in increasing degrees of agony, ending with me curling up in a ball and having a bit of a cry at work.  Settled down for a few days and seems to be randomly attacking me.  Since the procedure, have seen my doc (5:30 appointment, I got in there about 6, and didn't get out until around 7:30....) and shock horror was told that there's inflamation present in the terminal ileum.  Really?  Inflamation with Crohn's?  Never would have guessed.  On the bright side, to qualify for Humira you have to have a CDAI of over 300.  Even after they'd taken 10 points off me for being fat (I weigh 75kilos, most things say I should weigh around 55, however the thing for Humira says I should weigh 49.  Imagine if they'd seen me when I ballooned at 95!) I still came out at 388.  Application for Humira is submitted!  Only thing the GI's not sure about, is when I was on Imuran, I had to stop taking it because I was getting crappy headaches.  The government recognises headaches as side effects of the drug, however they do not recognise it was a reason to stop taking it (and still being able to qualify for Humira).  GI said he'll try his best anyway though.  Here's to hoping!  If not, the new reumy (who I see tomorrow arvo) seems fairly confident he can get me there with the joint pain.

Oh, and apparently my liver's still erring a little on the stuffed side, so I'm being sent to get an ultrasound done of it.

In non-Crohn's news, am working.  Well, I get up, drive to a place of work, and get paid for the day.  Am however not doing a damned thing, and I'm starting to get tetchy about it.  I want to work so the memories will leave me alone.  Sitting in a chair doing nothing for eight hours a day is not achieving this.  Hopefully, they'll realise fairly soon that they're paying me to do nothing and will give me something to do.  Oh, also don't believe I mentioned that it took the head office two weeks to arrange a computer for me, as a result of HR and IT arguing over who's job it was to issue me with an employee number.  Like the people, like the place.  Just want some work.

Have been attacking more yarn projects (again, can't show here because people who are receiving said things read this blog.  :P) and been thoroughly enjoying my books.  Rather disappointed in the bookshops though, because I've been looking for particular books for some years now, and they've only just got the series in that I want just when I really can't afford it (paying parents back for stuff, various med bills coming in, and saving for bigger stuff).  Cranky aimed at you A&R!

Fish are being fish.  The redcap is now back in the old fish bowl that they were all in originally, however still in isolation.  It became evident that the tank it was in had sprung a small leak and had been slowly leaking since being filled up a few months ago.  Lump on its side is now looking more like a wart than a blister, so I'm fairly sure the poor thing has a tumor as opposed to anything curable.  The other two are going alright, although the tank's green again for a little while, just not sure if the moor has white spots on him (again!).

Oh, will try and throw a link to this up the side somewhere, but for now, have a link to my Deviant Art account.  A lot of my photography goes up there, as well as food and yarn stuff I've made. 

http://lady-dao.deviantart.com/

Hah, the joy of it.

Off to dope myself on the first dose of poop liquid in about half hour or so.  I expect about two or three hours after that when I take the big lot is about when I'll become somewhat incapacitated for the evening.  Books are stacked and ready, sports drinks are chilling in the fridge, and right now, I'm going to go and make the most of not pooping by watching a dvd (and also helping mum cook curry for tomorrow night's dinner).  :D

Hope everyone is well.


PS-  I HATE FLAGYL!!!  Can't stand the taste in my mouth right now and not being able to get rid of it.

Stupid Old Hag

Happy birthday to my goldfishies!!!!  :P  Didn't get around to making them a cake, but will as soon as I have the chance/can eat cake again.

Now to non fish news.

Started my new job this Monday.  Week one down!  Struggling a bit, really know nothing about the industry, or the role really, and I still don't understand half the stuff I need to know and the woman who is teaching me the stuff is going away for a possible three months, two at the minimum.  Will soldier on though.  Need the money, need to keep a job.

Also went and saw the new reumatologist Monday arvo.  Took blood test results from the last 12 months as well as the x-rays that the idiot doctor did last year.  Finally, a doctor that can restore a little bit of faith in me.  He rang my GI while I was there, and brought my appointment forward with him to the next day, and they're pushing for the Humira.  Reumy is confident that if the GI can't get it with the Crohn's, he can get it with the joint pain.  Maybe there are gods.....

As mentioned, saw the GI on Tuesday arvo.  I'd had a cold recently, and also stomach pain.  Wasn't sure if it was from the cold, or from damage from the ibuprofen, or from Crohn's.  Stopped taking the nurofen, and hello liquid.  Stomach pain is quite severe sometimes, and everything is going straight through, to the point where recognition of the last meal is incredibly easy.  Food just isn't being digested, and is very obvious as to what it is later on.  Slime is back, and a teeny bit of blood.  It's the pain that's worrying me the most though.  Also have absolutely no appetite.  Only eating to keep everyone else happy really.

This weekend I get to undertake a delightful diet again, only to be knocked out and have things shoved in all sorts of delightful places on Monday.  For those new to my blog, I refer you now to the first or second entry of this blog, one of them details the delights of this and saves me redoing it.

Also been put on Flagyl for a while, just incase all the Crohn's symptoms are not actually the old hag, but an infection instead.  Rather ticked off about this, because the doctor admitted there's a 99.99$ chance it's the Crohn's flaring, but just to be on the safe side, I get to miss out on my stress relief (aka a nice bottle of Bundy rum) for the next week or two.  Bah humbug.

Had blood tests done again the other arvo.  Had to get jabbed three times.  My good vein decided to go to sleep again, so they had to use the other arm, and then they forgot to get some for some particular tests so had to jab me again.  I think they were rather inexperienced 'cause they kept jiggling the needle (probably unintentionally) and so it hurt and bled around the needle while they did it.  Now also have some lovely bruises and track marks on both arms......

Also have to go and get chest xrays to confirm I've not had TB before.  Apparently just some pre-Humira check or something.

I exist.

Blergh.  Dying from the plague, or at least some doppleganger of it.  Went and got the 'flu shot the other week and have been slowly deteriorating ever since.  Also on the medical side of things, I have an appointment to see a new rheumatologist this coming Monday arvo, so hopefully things'll start going right huh?  Am also needing to see the skin doc again.  The psoraisis is flaring like a bitch - itching, stinging, burning, weeping and oozing to the point of making clothes wet, and it's got the whole rotting flesh smell going on too.  Maybe if the docs work together they can work something out?  Eg - the humira that treats the Crohn's, and the joint pain, and the psoraisis.......

Went and got myself on welfare benefits.  Got my first payment this previous Monday and then yesterday needed to ring up and try to cancel said payments.  Got offered a job!!!  Working with a massive international mining company starting Monday.  They even seem flexible enough to deal with the doc appointments!  Yay for awesome employers!

In a fish update, I'm down to the three goldfish.  The last catfish keeled over and died a few weeks ago now and I'm still scratching my head as to why.  But, the goldfish aren't far out from their first birthday (14th May!) and yes, I'm going to be the crazy pet owner and make them a birthday cake.  :D

Been working on various little projects to try and keep my sanity, when my fingers will allow it, photos will appear eventually.  Promise.  :)

Hope everyone is well/recovering from any bad stuff.