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="">

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.

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.

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.  :)

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!

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. :)

Hating the world tonight.

So today's a year since my brother died. Had a bit of a meltdown earlier, now just recovering from downing a few glasses of Southern a tad quicker than usual.

I've had people tell me that time makes it easier. How much time? A year hasn't done much if I'm quite honest. Still hurts like hell, still mad as crap at the doctor that caused it. And just little things can trigger me off. Like the other night I started my photography course and the bloke teaching it starting discussing filters and such. Jogged the memory of my 21st, sitting in my brother's hospital room, unwrapping filters for my camera while he recovered from the anesthetic and an op. Don't quite know how I managed to make it home that night without writing off the car or a few others. And today, looking at fishtanks to try and get my mind off it and finding one with red sides. His favourite colour was red. Or hearing someone rev the daylights out of a car and knowing he never got to drive, despite being the biggest revhead I knew.

Eh. Figured I'd be better blogging than drinking, but I can't seem to get things out anyway. S'pose I'll try bed instead. Should be right in the morning. Kinda have to be, being Monday and all.

Hope everyone else is doing okay and that things are going to start looking up for those of you that I know are having some hard times right now, I know I'm not the only one.

Hmm... I think by the looks of things that an update is in order.

Canberra? Scratched. At least for now. Going through school I always had a definite idea of who I wanted to be and what I wanted to do. Now though, I have absolutely no idea. I think this should be my priority, working this out, before I go running around the countryside (as beautiful as it is) like a chook with my head cut off. Maybe one day though.

Speaking of running around the countryside, I've been treating myself occasionally to mini holidays, one day on the weekend where I disappear somewhere holiday-ish. One weekend I went up the coast, found some beautiful little coastal towns, and just generally enjoyed the drive. A week or two later I went south, found Somersby Falls, and fell it love with the place.

I have plans for other places, zoos, aquariums, more waterfalls, but honestly I've been very lazy and boring since. Work, sleep, more work, attempting more sleep, work, whinging about lack of sleep.

Which leads me to bitch about my gut doctor. He is unable to find a reason in my blood tests to explain why I am so tired all the time, so rather than send me to a sleep specialist or someone who may have a clue, he's come to the conclusion that I'm depressed and need to see a shrink. Based solely on the fact that I'm tired. Never liked this doc from day one, now? Just hate him. Consequently, have not booked myself into the shrink, and have no intention of ever doing so.

Currently, sitting at home nursing a gastro bug. Not the Crohn's, that's under control with the Humira, blood tests back me up. Not the fructose either, been avoiding that. But gastro? People at work have had a similar bug, and despite them being able to take paid sick leave they didn't, and now I've got it. And I don't get paid sick leave. So I'm missing out on a weeks pay because people thought sharing was caring. I'd rather they didn't care. Went to see the doc yesterday about it, just a GP in a bulk billing place, and the moment he heard "Crohn's" he ignored everyting else I said. Didn't bother trying to diagnose me, and the certificate for work says a Crohn's flare. Bastard. At least I didn't have to pay, it's just so infuriating that they feel they have the right to put everything down to that. Seriously, I get the feeling this doc would have put a sore toe down to the Crohn's. Maybe even grey hair. Eh. I hate doctors. Is it any wonder?

Enrolled in a photography course to start in March, only goes for four weeks, one night a week, but thought it might be nice. S'pose I'll find out in March. :)

Anyway, hope everyone is well.

Fructose Hangover

Feeling after too much fructose = horrid hangover + bad case of gastro. Yuck.