Well those days took a while...

Oops.

Well, things have been happening.  Since my last post, umm...  I've been on Pred (nearly off it now, thank the gods), and salofalk, and for a little while predsol suppositories.  I've also ended up on Nexium thanks to the Pred.  The Prednisone didn't affect me quite how it used to, but there were some similar effects (hello weight gain!) and a few new ones too.

The wonderful company who deals with the Humira here is Aus also decided to give me additional doses of Humira on compassionate grounds, so instead of one shot a fortnight I was on one a week.

All was going okayish until the last week to 10 days.  I'm down to 2.5mg of Pred, so barely anything.  Unfortunately it seems the Pred has been masking everything.  My inflammatory markers are creeping up again, my gut's insisting on pooping more often, and making it liquid and slimey to boot.  I'm fatigued, and for the first time as a symptom of Crohn's, nauseous too.

I saw the specialist this afternoon after work and discussed everything with him, and it's essentially lights out Humira.  Three years of mostly good times with that, and it's all over.  I see him again in three weeks to discuss how to go about getting on to Infliximab.  I'm mostly okay with that, except for two things.  One, it's one step closer to having bits of my guts hacked out, and two, there's the whole sitting in a hospital for a day every eight weeks.  Guess if it works it'll be worth it though.

Anyway, that's the short story of the last few months.  I'll try and put talk a bit more regularly, but really, who am I kidding?  :)

Hope everyone's well.

Update Time

Oops.  This is what happens when I leave it a few (a lot) days between blog posts.  Things happen.

So.  Med wise I'm still on the pred, still stabbing myself fortnightly with Humira, and have been bumped up to 6 tabs a day of Salofalk.

Am also currently sitting at home recovering after a probing.  Yup, another colonoscopy.  Prepped over the weekend; limited food intake on the Saturday and the ever so wonderful approved clear fluids on the Sunday, then nil by mouth from midnight and probing this morning.  Glad it's over with.  Apparently there's not much amiss up there though, so the doc is a little miffed.  He did try to make mention of the enemas again, and I'm sorry but even when I'm doped to the eyeballs on anaesthetic I'm still going to tell you exactly where you can stick those, and it ain't anywhere near my butt.  I get to go and see him in a week, so maybe there'll be a new plan of attack by then?  Crossing my fingers.

I've been trying to keep myself occupied and keep my mind off things.  I've been attacking the garden among other things, my greenhouse is now mended (had a few nasty holes in the shade cloth) and my pots have been moved into there from the older, more falling apart greenhouse.  My vegie patch is now ready for plants again, full of poop and the walkways are now obviously walk ways.  And the grapefruit tree got cut down.  I feel a little sad by this, judging off it's size it's been here forever and a day, and the neighbours have memories of the little old lady who used to live here and her grapefruit.  At the end of the day though, it's the second year in a row that every branch has been weighed down to the ground with fruit and it's the second year in a row that every single fruit has been riddled with fruit fly.  Considering I don't really eat grapefruit, and I'd really value not getting fruit fly in the rest of my fruit and veg, I reckon in the long run I've done the right thing.

I've been making plans to redo bits of the house, take the carpets up and polish the floor boards (hello sock sliding!) and trying to work out just how to go about removing wall paper and wood panelling.

And then I've been busy with the crocheting too.  Yes, little old granny in a 25 year old body.  Some days I even feel old.

And I've been experimenting in the kitchen and using my wonderful better half as a guinea pig.  Poor thing, some of the flavours I throw at him I'm surprised he even lets me near the room, let alone do anything in it.  The things that keep you sane huh?

Anyway.  I'm off to snooze a little, still very tired and a bit woozy after my probing this morning.  Thankfully was only one end this time and not both.

Hope everyone is well, and will hopefully update a little more often.  (Though please don't hold you're breath, you should know what I'm like by now!)

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="">

Well damn...

Well I'm still crook.  Haven't seen the doc, but he is adamant that I stay on the Flagyl which is depressing enough.  He's also prescribed me Prednisone again, this time higher than the dose he gave me when I was first diagnosed.  Oh yeah, and I get to stay on the Humira.  Don't quite know how he figures I need the flagyl, the test results came back saying I don't have an infection.  Eh.  I'm not the doc, am I?

Don't really feel much like a giant post today, just feeling like complete crap and feel like the fight's gone out of me.  Why bother fighting something that's only going to keep on coming back?  I know I'll wake up in a few days time and feel a little better, but right now I just wanted to tell the world I feel like shit.  Self centred I know, but hey.  When you have any sort of ongoing health issues I think you automatically qualify for the right to mope.

Long Time No See...

Well it's been a while.  Things have been pretty good, until the last few weeks at least, so I guess that's why I'm back in the blog-o-sphere.  Always thought I'd keep blogging even when things were good.  Guess I didn't after all.  Anyways.

The last year and a bit has been pretty amazing actually.  I've had cold after cold but the Crohn's has been fairly under control, thanks to the wonder drug Humira.  I've had luck at work, I've been on secondment for the last 12 months, and I love the team I'm in.  The people are brilliant, the work is good and the pay is pretty damned sweet.

Today also marks 12 months since I exchanged contracts on my house.  :)  Worked hard, and got pretty much everything I had ever asked for in a house.  A large block, a good house, a good location.  Pretty lucky.

And to top it off a pretty amazing man walked into my life last July.  He's a pillar of strength, and I'm still awed every morning when I wake up and realise it's real, that he is here and it's not just a dream.  And the last few weeks I've needed his shoulders to cry on and he's been unfaltering in his support.

A few weeks ago I was carted off to hospital with chest pains, which thankfully have turned out to not be heart related, but have left a bit of a mystery as to what has caused them.  The last few days that I was off work with the chest pains, I started getting the runs.  With slime.  And blood.  So off to the GI I went.  So far, about the best he can tell me is that it might be a flare.  Might.  The bloods all looked pretty good a while back when I first started feeling bad.  Not sure what they're like at the moment, see the GI again in a bit over a week.  In the meantime I'm on the beloved flagyl.  So of course the stomach pain is worse, the 16 imodium I've had in the last 48 hours has doesn't nothing, the blood and the slime and the gas and the bloating has all gotten worse, and let's not forget the vomiting and nausea.  Bad enough that I'm now off work, unpaid, due to the side effects of the flagyl.  And the GI is insistent that I remain on the flagyl.  At least I don't have the metallic taste in my mouth this time.

The next step is back on the prednisone in addition to the Humira.  I'm dreading it.  When the GI told me that on the phone I had a minor panic attack, for want of better words.  All I could do was sit there and cry and rock for a while.  And all the while I know that that's where I'm going to end up.  The flagyl just isn't working, and I'm so pissed off that the GI is telling me I have to stay on it when all it's doing is resulting in me facing the possibility of not meeting a house repayment.

I feel almost like I'm back at the beginning of Crohn's.  I feel I'm facing the unknown again.  I don't know what's even happening a the moment.  All I know is I'm in pain, mostly made worse by the flagyl.  And the doc won't take me off it until he throws me back on the pred.  And if that doesn't work?  Facing maybe the possibility of surgery.

I dunno.  Just feeling lost, so I guess I'm back here again for a bit.

Might take a holiday, but I guess you won't see the end of me for a while yet.

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.

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/

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.

Pain (AKA She learns how to put pictures in!)

Hmm..... So. Went and saw the rhumy yesterday. On the plus side? He wants to interfere with the Pred 'cause he wants me off it. This is a good thing. If he hadn't interefered I'd be sitting at 15mg for the next few weeks, which is better than 40mg, but not as good as none. Instead I'm backing down by 2.5mg per week until I'm down to 5mg and we go from there. On the downside? He's suddenly decided that I don't have inflamitory arthritis, despite the x-ray proof, and his previous opinions, and oh, I don't know, the excruciating pain. So. Not only do painkillers not make an appearance, it now seems like he won't be pushing for the humira or infliximab. Bad. Very bad. Because the GI wants me on one for the Crohn's so it doesn't get bad again, but because of all the hoops, we can't get it for the Crohn's. He was relying on the rhumy getting it for me for the arthritis. So was I. Won't go into the temper tantrums, but let's just say it was better I wait a day to post than post straight after I got home.

Also a bit mentioned about sleep and pain and vicious cycles. Oh, and the warmth and massage and exercise to help with the pain. *dumb look goes here* Sure, I don't want drugs if I don't need them, but fuck me, how much pain do I need to be in and how messed up do I have to be for somebody to damn well do something?

I'm just so tired of nearly getting my head around something and then have everything change.

My fish are being cute, as usual. Them, and a glass of scotch and coke settles me. I still get lost in watching them. I swear, I'll glance at the tank and then ten minutes later realise that the quick glance has turned into a ten minute staring contest. With fish. :D

Here are said fish and fishtank
(finally learnt how to put pictures in too!).


Above is one of the cute baby catfish.
Find him! I dare you! :)


And my all too cute black moor, all cured now. :D

Yay!

Yay! Went to see the GI yesterday arvo after work, and I'm down to 15mg of Pred a day now. Yay! Happy dance for me though? My joints have decided that they hate me today (again/as usual). Was also told unfortunately that there's no chance of me qualifying for humira/infliximab with the Crohn's alone, so the GI's hopeful that the rhumy can get one or the other (most likely infliximab) for me with the arthritis. See him on Friday, so I'm hoping the ball can start rolling then. I'm getting fed up with the pain, and I'd very much like to come off the Pred completely, but the GI's hesitant to do that until I'm on something else (so much for not wanting to turn me into a druggie...).

Yeah..... Nothing new really apart from that. Other than I'm glad I took the sleeping tablets last night. Still woke up heaps and didn't really sleep that well, but I think I would have only had about two hours again if I hadn't taken them.

Meds and Money

Went and saw the GI yesterday after work. Things seem to be going okay. Inflammatory markers are within normal/close to normal. At the request of the rhumy, the Pred has been reduced. Instead of 40mg a day, I'm now on 30mg for a week, then 25mg for a week, then down to 20mg. I stay at that until I see the GI again, in about a month. Am somewhat stoked about this, just still scared that I won't be able to be weaned off it completely.

There was also talk about Infliximab as opposed to Humira. It was mentioned in the letter the rhumy sent the GI, so I guess that's the one they're going to aim for. It also seems the rhumy will be the one dealing with that, because while there's hoops to jump through either way, it seems for the arthritis they're just hoops, but for the Crohn's it appears they like to douse them in flammable liquid and set them on fire. Oh, and maybe blindfold you for good measure too. Not so sure about the Infliximab, but will worry about it when they're actually going to put me on it.

Am sore today. Elbows, shoulders/upper back, and my fingers are going too. Worried slightly that it could be from the drop in Pred. Will have to keep an eye on it. Am very tired too. Need sleep.

Support group tonight. Hoping to make it. We'll see.

Payday tomorrow. And late night shopping on Thursday. There's a shirt I've seen somewhere, and despite it being $70 I can't get it out of my head, I think I'm going to go and get it. Or at least try it on. :)
Plants may or may not be going to appear on my work desk. Am leaning towards those small bamboo plants in the pretty pots, just for ease of looking after, and also because I have a rather not so green thumb. Seriously, I have managed to kill every single plant I've owned, and that's saying a fair bit seeing as the only plants I've ever had have all been cacti.
Am also going to spoil my fish. They've been swimming around in an unfiltered, 6 litre bowl since I got them, along with the two or three plants (which I might add, they've finally stopped uprooting!). There's a tank I'm looking at getting them and setting up over the weekend which is significantly bigger (20 litres), and includes a filter and (I think!) a light. Will also get more plants for them, a different brand of weekend feeders (they're fussy buggers and won't eat the current ones I get for them), and maybe a statue or two for decoration. If they're lucky they might get some live food too. :) See? I'm a good pet owner.

Gargh hands hurt!

Trip to the rhumy...

Went and saw the rhumy today. Surprise surprise, I have arthritis. What actually was a surprise is that I have two different sorts. The first one is some form of inflamatory joint one (didn't give me a name, I forgot to ask), which the Pred is possibly helping. The second one is one that affects the tendons and such, which the Pred is most likely aggrevating. So in a way I was right, the Pred is causing some of my pain. Currently, my xrays help me qualify for Humira, the blood tests don't. However, they most likely will once I'm off the Pred. It just means coming off that first. So rhumy's going to have a chat to the GI, so hopefully on Monday he'll start weaning me off that. And I didn't even have to ask!

In a way no more Pred will be fantastic. No more yucky side effects, and hopefully weight loss will ensue. I am scared however of the possibility of more pain. Yes, pain scares me. I deal with a fair amount of it on a daily basis, but the thought of more pain honest to Gods makes me curl up slightly into the foetal position and my eyes do water slightly at the thought. So here's to me being brave.

So no pain relief given. Apparently nothing much will work anyway, so he's suggested heat packs (which don't really do anything), massage (not really leaning favourably towards letting people poke and prod at the sore parts of me), and gentle exercise (hello? Did you not listen when I said I can't move from the pain?). I've basically just gotta ride it out until they can try and get Humira going for me. And now I'm slightly scared that something will go wrong and I'll either not qualify or I'll have to pay full price (which there's no way on this earth I can afford, no exaggeration) or I'll have a reaction to it and be back at square one.

*sigh* I hate all this guess work. And I really hate everything seeming to go wrong, and then multiply. Bah humbug.

Possibly not going to the symposium either. My brother isn't well and needs trips to hospital every now and then, and it's looking increasingly likely that he'll need to go in over the next few days. Both parents are generally involved with that, and there's not really much of a chance of me driving to Sydney and back on my own. *shrug* Ah well. Maybe next time.

Owwies and Planning

Stocktake of the owwies this morning... Both hands/wrists/fingers. Both elbows. Back. Right hip and knee. Left shoulder and knee. Neck to a certain degree. Also have Crohn's pain (either from Maccas for lunch yesterday or pizza for dinner, I had a bad day) and the coldy/fluey crap that's going on.

Off to see the rhumy tomorrow. Wondering what's going to happen with that. I mean, it's gonna cost me a fortune, and possibly all that's gonna happen is that I'll be told I have arthritis, which he told me last time anyway.

Saturday I'm possibly off to Sydney for the CCA symposium. Will mean an early start, but hopefully dad won't hate me too much if I sleep in the car on the way there and back.

Sunday I'm going to attempt to make it to the local farmers markets. I used to get every fortnight, and then every week when they changed to that, but I haven't had the energy in months now. That needs to change. Planning on doing a stall there one day (it's a craft market too), so will need to be able to drag myself out of bed early enough for that.

Monday is work, then the GI doc. Seriously need off the Pred. Struggling to get out of bed some mornings with the state of mind it puts me in, not to mention all the other delightful side effects I always whinge about. Promise I'll stop whinging about them when I come off the Pred. Promise! :P Hopefully he can get the ball rolling for the Humira too, if the rhumy doesn't do it tomorrow.

And then Tuesday after work (as long as I'm not dead to the world) is the monthly support group thinger. Hoping to go. It's good to know I'm not entirely alone in the world.

So I'm a teeny bit busy for the next week or so. Will probably run myself into the ground and take a few weeks to recover, but hey. That's what I do.

New financial year starts today, so new plans are starting to take shape. Want to do another Tafe course, but not through Tafe. Can't stand the thought of going back there, and besides, I wouldn't be awake enough of an evening, which is my only available time. So I'm looking at paying $1500 instead of $900 and doing a Cert IV in Small Business Management through the distance ed part.

Also hoping to do the market stall, but a lot of planning still needs to be done, and as such it may not happen this year (calendar or financial). We'll see.

Hoping to buy a laptop to be of use with the market stall stuff, but also I want to get back into writing. I used to write a lot, but haven't in recent years. I like the idea of running away with a laptop to a beautiful quiet location and being inspired by that and typing away for however long the computer lasts before the battery dies. Sounds like fun to me.

And my photography. Need to get back into that. I've hardly done any since I did a friend's wedding shots, I just haven't really been motivated to. Need to fix that and get some nice shots again. There's a camera that I'm looking at, it's actually better than my current one spec wise, but the main thing I'm after it for is that it's a compact one, and while my current one is an amazing camera, it's a large clunky one, so it makes it difficult to take it certain places. No point in buying a new camera though if I'm not going to use it.

I'm noticing with this blog that it's becoming more or less my main blog, despite originally starting out as a place for the Crohn's. I was trying to separate the Crohn's from my life, as well as keep my sanity. Neither have happened. :P So I'm not going to bother trying to keep things separate from now on. Random stuff will appear in here, completely unrelated to my bothersome gut, so I guess I'll just tag the Crohn's related stuff with Crohn's and the rest will be the rest. Don't worry, it'll probably still be about the same as it is now, just maybe slightly better tagged?

PS- No kitten. I still really want that kitten.
PPS- Didn't win lotto last night. Bugger.

Rhumy update

Was meant to go to work yesterday before going to see the rhumy, but some delightful driver decided to run me off the road then continue as if nothing had happened (hope he got fired or had a very shit day). Another driver stopped and made sure me and the car were okay, but yeah. Scary crap. Took the first left, pulled over and bawled and howled like a baby. Parents came and rescued me, so I had the day at home.

Also went and saw the rhumy. Sending me for x-rays and blood tests and such and is seeing me again in two weeks. I actually didn't mind this doctor. Heck, I'll say it 'cause I don't say it often, I liked him. As far as doctors go, he's nice, and he seems to know a fair bit about the Crohn's too, not just arthritis. Anyway, he did all the flexibility things (apparently I'm rather flexible), and I amused him when he said to lift my arms as high as I could and I got them level with my shoulders before the fat started hurting (there's a fair bit more there at the moment than I'm used to, and it does kinda hurt occasionally), and when he asked why I said ow I told him the fat hurt. He wasn't quite sure how to respond to that one. :)

Anyway. Basically, I've got some inflamitory sort of arthritis as opposed to degenerative (so in my eyes it's the better of the two). He's mentioned Humira as well, so it looks like I'm heading down the self-injecting track. Just hoping I can get the pens instead of the needles. Really can't stand needles. Speaking of, had two cortisone injections (one in each shoulder) which should hopefully help settle things down and help the pred settle the inflamation. So my shoulders are rather stiff and sore, but my hands are working a teeny bit better today.

Anyhoo. Just thought that stuff was worth posting up here. Nothing much else happening, apart from that cold thing still lingering. Snuffy and stuffy and blergh today. Hopefully Red Bull and telfast can fix that for later on. :)

Update through the pain...

So. Attempting to block out the pain while I'm typing....

Went to see the doc yesterday. This time dad came with me. I was amazed at the difference in the doctor this time. He's gone from being Doctor Useless to Doctor Informative or Doctor Caring in the snap of a finger. Maybe he's a bit old school and prefers to talk to blokes. *shrug goes here* Dunno, but it was much better. Anyways. Blood tests and pee tests done last week indicate that there is no rhuematoid arthiritis present, however he did say that the arthitis you can get with Crohn's mimicks it rather than actually being RA. So he's trying to get me in to see a rhuematologist. Was going to phone him today and get back to me today (see below). Also said he won't put me back on the Imuran seeing as the headaches are gone (or at least much better now), which indicates that it was the Imuran causing them. Sadly, this means longer on the Pred, and no backing off it at the moment. It also means he needs to come up with an action plan or something of the sort in conjunction with the rhuematologist in order to treat the arthritis, and also look at getting me onto Humira, which would be awesome in a/treating the Crohn's, and b/getting me the hell off the Pred. No pain relief prescribed. :(

Woke up with my hands still in a degree of agony today. Don't quite understand why as I rested them all day yesterday. Still. Got sorted, went to work. In pain. And it continued to get worse. I lasted 45 minutes before asking if I could leave. Very grateful to the people I work with, very understanding.

About to leave, and my boss had a chat with me. Apparently there was a meeting yesterday which I missed about our work hours and such. Nothing to do with my medical stuff, but because we've had bugger all work coming through lately everyone's being cut back to a three day week instead of the normal five day week. Not hugely shocked by it, well, surprised a little, but it has been extremely quiet. Just a little worried about money and such. Mind, it's not as though I'm capable of working a five day week at the moment with my hands how they are anyway. Just wondering how things'll go with less money, more time to spend it, and more things that I'll have to spend it on. Hopefully things'll go okay.

Was driving home this morning and my phone rang. Doc had phoned the rhuematologist (rhumy from now on because my hands hurt and my spelling is probably wrong). Unfortunately, a/ rhumy wasn't in office until this arvo, and b/he's not able to see anyone until August. AUGUST!!!! That's six to eight weeks of agony before I even get to see the guy! Doc did say however before I could get upset with him (not his fault, I know, I was just starting to goggle over a 6 week wait) that he would write a letter to him, fax it through, and would contact me again tomorrow in the hope of getting me in quite a bit sooner. So hopefully tomorrow I'll have some good news. All I know is I can't survive the pain for that long without some form of relief.

So yeah. Not a fantastic day really. Very very painful, and I'll still not sure why. They're normally a bit better after a day of rest, but they've gone the other way. Stupid hands. Anyone like to trade for a bit? Also, coldy gunk kicked back in a little while ago, so feeling all gluggy in the head and nose too. Blergh. It's raining. Which would possibly add to a bad mood, but I like the rain, so it's a positive. As a result of the hands though, I have spent the day mooching in front of the tv (it hurts to hold a book right now). Dvd of 300, then Dr Phil (crap show, but hey), then Oprah (wow mid day tv is just so exciting!), then Ready Steady Cook (a show I actually don't mind). And now this. Despite the agony, it needs typing. I'm sure there's one or two people at least who read this and possibly want to know what I'm doing, and it helps me keep track of things, so yeah. It is important.

And because I'm only going to be at work three days a week and probably home the other four, I'm looking to bring my fish home rather than on my desk. I'll get a plant or something that's easier to look after if others have to water it or whatever. It also means the fish can have a bigger tank (scrap that, they get a tank as opposed to a bowl), and a filter (zomg!), and if they can behave and stop pulling their plants out then I might get them some more of those too. Spoilt fish they are. ;D But they're cute, so they're worth it.