Tuesday, July 27, 2010

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.

Sunday, July 18, 2010

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

Sunday, July 11, 2010

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.

Wednesday, July 7, 2010

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.

Monday, July 5, 2010

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.

Sunday, July 4, 2010

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.