Tuesday, July 16, 2013

Well those days took a while...


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.

Thursday, April 25, 2013

So when my lovely anaesthetic really started wearing off I started having a little fun.  Monday arvo/evening I started pooping liquid like a trooper.  Worse than the Sunday night when the prep gear was going through me.  Pooping and pain and lovely pretty stars sparkling in my eyes while we're at it. Oh and nausea.  Eventually doped myself on panadol and imodium and put myself to bed.  Had Tuesday off work as well on the doc's recommendation, and for once I'm glad I listened.  Still wasn't brilliant on the Tuesday, sore in the belly and quite comfortable to sook on the sofa for the day.  From memory I didn't end up this sore with the last few, so fingers crossed there's nothing the matter in there.

Anyway.  Today's a public holiday here in Aus (ANZAC Day, lest we forget), so no work today.  Been giving the better half a hand with his uni assignments today, and baking.  Made some choc chip, peanut, chocolate cookies, and have made up a batch of plain cookie dough and stuck it in the fridge for the weekend.

I used to bake a bit when I was younger, just simple cakes and cookies, but then towards the end of school assignments got in the way, and then when school was over life got in the way.  I've been cooking a bit more recently, and I'm remembering just how much I enjoy it.  When I'm cooking I'm looking forward to the looks on peoples' faces when they're enjoying my food, so I get the double enjoyment of imagining it and then experiencing it.  Oh yeah, and the 'chef's treats' while you're cooking.  :)  Possibility of photos when I get off my butt and stick my photos on the computer.

Monday, April 22, 2013

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!)

Saturday, April 6, 2013

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="">

Friday, March 29, 2013

Pred update

Day 4 of prednisone.  Still not comfortable taking the stuff, but hey, when is anyone ever comfortable taking pred?  Spent the night tossing and turning, woke up a million times.  Had a headache yesterday and stupidly took nothing for it.  Kicked in big time over night, had some panadol about 3:30 am, and the headache went away about half hour later.

Think the flagyl is still making me crook.  Thinking about taking myself off it despite any protests from the GI, I see no sense in staying on a med that doesn't seem to be benefiting my health, if anything it's making me worse.  Unlike the GI I don't earn enough to be able to shrug it off when I need to take weeks off unpaid (because of the side effects from flagyl).

Legs are also starting to feel like they're going to cramp, expect they probably will in the next few days.

Anyway, just trying to keep a vague track of things with meds, so probably just short posts.

Monday, March 25, 2013

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.

Saturday, March 23, 2013

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.

Saturday, July 23, 2011

The Spoon Theory

I figure it doesn't overly matter that I don't post here that often, seeing as I just do the same old stuff all the time. Recently though, been doing even less, just work, sleep, work, sleep, staggering around like a zombie, sleep.

Have been feeling kinda awful lately, the fatigue has crept up on me again, and I've not got the energy to really get out of the house. I have a shower, drive to the shops ten minutes away, wander around for half and hour, drive home and I'm buggered. And throwing in a headache that I've had for at least two months now just isn't helping. So firstly I'm feeling like crap because of all of that, and secondly I'm having to turn my friends down for so many things, even simple things like the book club that we have once a month just drain the bejeebus out of me.

Being all miserable with the tiredness has had me thinking, and it made me remember reading something awhile ago. Not sure if someone here on the blog-o-sphere linked to it, or if I staggered across it on google, but figured I'd link to it here. I think it's the best way of describing to people how I live, why I have to turn things down, why sometimes I can manage something, but mostly I can't.

The Spoon Theory. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/  Perfectly explained, at least in my eyes, and can very easily be used for other illnesses, not just Lupus.  For me, my fatigue is the main "spoon user".  And just for the record, I've used half of my last spoon of the day to type this, the other half will be used to get myself into bed and turn a few pages in a book.  :)

Sunday, June 19, 2011

Oops. Totally meant to update sooner. Really.

Ummmm, yeah. It's totally only been a few days. Don't mind me, I got lazy. What have I been up to? Well, the usual mostly. Sweet bugger all. With a few exceptions.

I sent myself down to Canberra a while ago to visit some friends who recently bought themselves a house and got engaged. It was quite nice, cold, but nice. Went to my beloved Bus Depot Markets, enjoyed food (as I always do) and did a bit of shopping too (Hello Lush!).

Also hit the furniture shops with my friends, which got me excited because I'm one of those nutcases that actually enjoys furtniture shopping. Seriously. You know how some girls get their buzz from clothes or shoe shopping? (Both of which I despise, just for the record.) I get mine from things like furniture shopping, or appliance shopping, and going "OOOH! Look at that! When I've got my own house, I'm gonna get one of those!". I do a similar thing with paint colours. Occasionally I'll just get the urge to go to a hardware shop and browse through their paint colour charts and bring a mountain home with me. Honestly, there is a shoebox gradually filling up with these.

Have also managed a catch up with one of my best mates who lives on the other side of the country. Only get to see him maybe once a year these days if I'm lucky, so it was a pretty awesome day.

Been heading in to the lapidary club that I'm part of one Friday a month, and lately have been going on Saturdays too. Having fun shaping and polishing stones, and will venture into the silver work side of things again soon too. Itching to work with copper moreso, but I suppose the silver is somewhere to start. :)

Have discovered another author that I'm adoring the work of. I've noticed Robin Hobb's books in a lot of my friend's bookcases, but have never got around to reading them. Was just looking for something new to add to the library one day and figured why not? Fantasy type stuff, and I would highly recommend her books.

Have been cooking a bit more recently. Taught myself to make cheese sauce last weekend. Ever so proud of myself. Was making a lasagne/pasta bake (gluten free pasta, bolognese sauce with limited fructose containing ingredients, limited onion) and had made a bol before, was a little worried about the pasta (despite my love of cooking and food, I think I'd only cooked pasta once before), and was terrified of the cheese sauce. Turned out a treat though. Have had fun with rissoles, savory mince, meatloaf and a few other bits and pieces. Also planted a few cloves of garlic two weeks ago and they're growing like there's no tomorrow. I love using garlic in things and go through it fairly quickly, so figured I'd try my hand at growing it. Am going to experiment with growing chillis and capsicum (bell pepper) from seed too.

I suppose the best bit of news I've got is that I finally landed a permanent job!!! And govenment to boot! :) Absolutely stoked. It's the same one I started as a temp at last October. I put in for a permanent role that was going just before my temp one finished and missed out, but only just. They said I was at the top of the 'reserve' list which was disappointing at the time but hey. I was put on a three month contract with one or two of the other temps that had been there, and then the 12th of May rocked around and I was told a person had left which meant there was a position available and did I want it. I think I nearly passed out, I've been trying to get permanent work for what seems like forever now. There's so many benefits with this job; the pay, discounted uniforms, one day off a month paid (hence the Friday at the lapidary club), the leave, the people I work with and for, opportunities for training and education, and if I so chose I could be in this job until I choose to retire. The best bit? I will be able to buy a house. As a temp, you're laughed at if you try to rent or buy. Now? I should hopefully be buying my first house in about 18 months.

So yeah. That's me about summed up. Apart from a special shout out to one of my friends on the blog-o-sphere and her man, The Gutsy Girl, who announced recently that after so long of trying, they're expecting to welcome a new life into the world. Here's to hoping everything is absolutely perfect in every way imaginable, and every way unimaginable as well. You both deserve it. I just hope Penny learns to share her parents!

Saturday, April 16, 2011

So it's Autumn. And it's the weekend. And it's raining. I find this scenario quite comforting actually.

Stay tuned, proper blog update on it's way. At some point over the next few days. Hopefully. :)