How do you know when it's time

How do you know when it's time to go get the op?

So I asked my neighbour this question last month and the answer was, "You just know". Well, I don't know.

How much pain do I need to be in? Should I wait until the doctor tells me its time? Should I wait for the first signs of cancer?

I'm hoping that I never have to have this operation, but reality is that I will at some stage. I want the miracle!! I don't want the op.

I was reading a story the other day about Freddie Mercury and it stated that is only Freddie could have survived another year, the advances in medicine and especially in the treatment of HIV and AIDS could have saved him.

I know UC is not on the same level as Aids, but I keep hoping that if I can survive with colon intact for a bit longer, then the medical world might actually have the break through that we need.

2 years on

I've learnt a lot about myself in 2 years ... some of which I'll never admit to publicly neither, but at least I know. I never was able to relax here in France ... too many things where against me ... but heck I did have fun when I was on the preds.

As long as I'm safe in my house in the flare-ups times then friends were always welcome to come over. We head home for a quick "sort the house out" trip in 2 weeks and life is certainly on the up. I got a doctor here to give me all the meds I wanted. Believe me I was truly surprised...I must of had that look on my face that scares the crap out of people when I get forceful. Doctors 0 - Paula 1 on this occasion :D ...

I only came out of remission when this whole trip started..so maybe stress is my trigger...let's see how I'm going come April when I'm home for good.

2 years is along time away from home...especially my home town of Brisbane...it got a bit wet last week, but in true Aussie spirit, Queenslanders don't stay down for long ... I wish I was at home to help out all those poor families though...so much loss and destruction.

Next time you are feeling down, just think to yourself, I'm still here and kicking and can do something about it.

Good News

Ah, maybe I will get lucky as today I had the best news and I got a working Apple Mac Pro back :D and I also got a new Ipad for Christmas as my husband felt bad for me the the really old laptop I was using.

It could be a sign that things are turning a corner for me. I'm into signs...always looking for them..good or bad :D

Christmas Day night saw a very bad case of UC..it was so awful I had forgotten the pain and the toilet running. I as up for hours. But thanks to my stash of preds, everything is again staying put and we'll see what the first real 'movement' is like maybe by tomorrow :D.

Can't say what kicked it off but it could be prawns, a tiny bit of champagne, a mince pie or some chocolate ice-cream. I had so many different things that I don't normally have now, that's it hard to tell for definite.

So I have discovered a couple of new things...I blame myself for everything that goes wrong, even if I don't cause it directly myself. So I'm going to try and work on that one. I realised today that I've been punishing myself since Oct over the broken Mac, maybe if I hadn't have done that, but I did, so there you go.

So what next for me for 2011..... well, try to be more positive and get this UC under control and get back to Oz and get a job :D

Merry Christmas

Tis the season to be jolly, / Fa la la la la, la la la la.

I don't feel very jolly though ... I'm scared … actually I'm petrified. I can’t get this horrible feeling to lift. I used to be the sort of person that loved life, now I feel like a shadow of that person. I’m scared to have the UC operation done and be left with a bag. I’m scared what I’ll look like. I’m scared about having accidents. My whole life seems to be one big scare that revolves around UC. I seem to have lost the will to live. Don’t worry I’m not suicidal just yet, though reading this will appear that I am. I promise I’m not going to do anything to myself … not with 2 little kids in tow. I’m making everyone’s life a misery though and I know it. How can I stop myself though feeling such self pity. I seem to have lost all of my confidence and life.

This all came about again when recently someone who I thought was my friends totally dropped me and another friend, and we have no idea what we. We’re at a lose, but it really pisses me off that people do that. I put a lot of effort into getting to know people and trying to fit in, but when stuff like this happens I feel like I’ve been kicked in the guts and the wind is totally blown out of me. Why are people like this? I really do find it hard to trust people and it takes me such a long time to recover from these situations. So how do I get over this and move on … forgive and forget … yikes not me … I can hold a grudge for years. I think my problem is that I feel let down. But doesn’t everyone feel like that? So why is it worse for me. My personality I guess and all the stuff I was born with. I really have to catch a grip and wise up.

Someone, please kick me up the arse and tell me to wise up. I should be feeling grateful. I’m going home in Feb for good … back to Australia and speaking English and hopefully someone listening to my theories and plies for help. I should be grateful for my 2 beautiful kids, but sometimes they do my head in with their ungratefulness. Maybe I’m just being ungrateful about the lot of life I was given. But heck, I’m still in a position to change anything I want.

So here’s what I’m going to say to me right now….”Wise up Paula, what the heck are you doing … live life and stop bloody well complaining. Your 43 and your body is not the bee all and end all. If you have to get a stoma, you have to get a stoma, at least you’ll be able to live a life. Make the most of what you have and stop all this self pity. “

Merry Christmas everyone … stay safe … have fun :D … enjoy the life you were given

Still hanging in there :D

Hi ya, yep, I'm still here and still in a flare up and still bitching and moaning about my UC and the fact that I can't get into remission. Seriously....why can't I get into remission?

I've tried everything I can think of and sometimes I think I'm on the right road only to get bumped right back to earth again. How frustrating is this disease?

So I have a stash of preds ready and by my reckoning I can start taking them again in just over a week. There's just enough then to get me back to Australia in February where I can get some more and also have a good old chat with my doctor. Nope I tried that over here with the French doctors and basically I got kicked out the door with a prescription for 5mg Pred a day when required. Get real, but I cashed in the prescription of 30 5mg tablets anyway and added it to my next stash! It buys me an extra 3 days @ 50mg per day if needed to get the blood stopped.

So what's new with me? Well I finally got to see a Naturopath and she's got me on a few new things so we'll see how they go. If anything does seem to be working for more than a few days, then I'll document it in my next blog...no point in giving false hope. I also had a bit of a scare with my 8 year old last month as he was getting heaps of stomach pains, so of course I conclude that he has what I have. To be honest I can see him as a candidate so I'm doing my best not to let him get what I have. I'm teaching him how to handle stress now...I'm teaching him how to deal with bullies and I'm really trying to teach him of how to deal with his insecurities as I really don't want him to be like me! Turns out the poor kid got hit with quite a few viruses along with getting stressed at school, but now I know what's going on in his head, I can try and help him.

Our time in France is nearly over and although a really do breath a really big high sigh of relief, I have enjoyed living here when I’ve been on the preds and symptom free, but I will be happy to go home and speak English all the time. Living in a foreign land is hard without being fluent in their language, but I have tried and can almost crack some jokes in French, though my form of humor may be different from many others :D

that will teach me to speak too soon :(

So I spoke too soon...and I'm all over the place again...no bowel control, though I have to say, it's not as bad as it was last year. So what the heck do I do now. The preds aren't working and I'm at a lose. I'm going ot taper the preds out over the next 4 weeks and to see exactly how bad this is ... if anyone has got any better ideas, please let me know.

And I've found another thing to try...heck...why not...so now I'm on a daily dose of cabbage or cabbage juice ... yep, I was suprised at the one too. Google it's benefits if you don't believe. One week into it, so who knows...I'll give it a few months and see if there are any benefits and let you know.

Is it really working?

It's just about the end of summer and the kids will be going back to school soon...yeah says I!!! Its actually easier to go to work somedays than have to listen to kids fight and bicker some days....kids can be very frustrating some times.

Anyway, I'm down to 15mgs of Pred and its going well this time. I haven't been this low without loads of mucus and blood sightings in 2 years!!!

All I'm doing different this time is trying not to stress out along with taking magnesium, zinc, Vit B and a good probiotic. Is that my cure...who knows.

The SCD diet left me feeling really low, but in 10 weeks I've bounced back to a high that a haven't seen in years...and no it's not been caused by the pred.

I don't know if eating less refined sugar and fat is also helping as all the doctors say that food isn't the cause. My jury is still out on that as I really think it's a combination of what is happening in my mind and what I'm putting into my body.

Lets see what happens in the next few weeks .... please keep the blood and mucus away .... please let my body heal after a nightmare 18 months ......