Showing posts with label fear. Show all posts
Showing posts with label fear. Show all posts

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.

Thursday, July 2, 2009

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.