Tuesday, September 29, 2009
Maybe it's just me today...wrong place / wrong time, but I think the French can be pretty aggressive when things do not go their way. Okay, I admit it, I can let a little aggressive to, but boy am I learning to turn the other cheek and walk away. What's the point in verbals here anyway? I really don't know enough French to get into it with them. I've started to notice that I kind of switch off.
I seem to be doing that a lot lately. I was driving by myself the other day and lost about 3kms of my journey. That kind of scared me though, especially when I thought about how I'd gotten onto that stretch of the motorway.
A funnier side I have also recently noticed, especially when I'm in the check-out queue at a supermarket, it that I have adopted a little light music in my head from an old kids TV show that I grew up with in the UK...a theme tune from Vision On with Tony Hart when they showed all the art the kids sent in. I always wanted to send something in but it was just one of those things I never got round to doing. He did some brilliant artwork..ahhh..those where the days...
http://www.youtube.com/watch?v=Om2HbDzZOWA - Link to Vision On theme tune from back in the late 1970's :D
Sunday, September 27, 2009
But heck, that's what I found myself doing today. I really couldn't help it, (well I could if I'd tried), but I was cooking Richmond sausages and the smell, well the smell just got me and I went mad and through in the lot for good old-fashioned 'fry-up'.... sausages, bacon, eggs, good old baked beans and toast.
Of course I'm suffering now...but was it really was worth it....hopefully everything will have calmed down by tomorrow :D
Friday, September 25, 2009
I think mine does, but I've only just stumbled across this as I was on the road to a more positive place and bang..now I feel that I have taken several large steps backwards.
So if this is the case, then surely there's a link to changes in my levels of the hormones estrogen and progesterone. I don't really want to go on the pill for various reasons, but I do think that it's interesting that I've noticed a change. I also know for a fact that my mood levels also change during this time.
So lets see what next week brings. I seriously need to get myself back into remission though as this has just been dragging on for far too many months now. I am grateful though that I've made a huge heap of progress in the last 4 weeks though. These monthly glitches will just have to be dealt with. And if any males have read this...just be happy this is one less thing that you have to deal with :D along with your UC!
Wednesday, September 23, 2009
So no I'm not going to take his recommended dose. I'm going to stay on what I'm on the level I'm at now. I've got 4 more months before I can get back to Oz and get all the drugs and advise I need to get me through a further year here. Though if I can get some benefit from the rewind technique, then I might now have to bother with this French doctor anymore anyway....problem solved.
The things that scares me the most is that doctors are supposed to be smart people, but recently I'm seriously having to question their actions.
Apart from that, I'm still going well in the positive direction. I'm having a little issue with the rewind technique as I'm stuck at trying to find the 3 things that you need to think about before you get started. That's a bit of a bugger as it made me realise what a shit of a life I have been leading. I know I have good things going all around me, but it's a bit of a blow to realise where you have ended up with this UC disease...but it could be worse.........
Monday, September 21, 2009
- What are 3 positive things about this problem?
- What's not yet the way you want it
- What are you willing to do to get the results you want?
- What re you willing to stop doing to get the result you want?
- How can you motivate yourself and even take pleasure in doing what needs to be done to get the result you want?
- What's something you can do today to get things moving in the right direction?
So I started things about my UC and could only come up with #1 - kind of positive thing and that was that it keeps my weight down. #2 - bugger..loads of things. So onto #3 and #4 - I'd do what ever it takes. #5 - I'll have to wait and see what I have to do first. #6 - think about what I'm stuffing in my mouth..bugger there goes the sweet stuff and beer...but to be honest I'd already decided no beer, wine or bubbles anyway for a few months.
Oh, and my books arrived today..so I'll start reading tonight..although I still have to finish the 3rd book of the Twilight series...who will Bella choose (as if I didn't know!!)..but don't tell me anyway :D
Friday, September 18, 2009
Now that I've got that off my chest, here's where I am with my UC today.
Had a bit of bright red blood last night, but only 1 bowel movement again throughout the whole day. Of course I was a bit pissed off to see the blood again, but a couple of things had annoyed me this week and I hadn't dealt with them. I also made a stupid mistake and changed my maintenance drug to prove a point to my doctor. Luckily I'm hoping that my stupidity hasn't set me back a week or two as I still have made a heap of progress with just mentally dealing with my issues over being scared and stressed. What ever happens, I've gotten where I've gotten to without use of steroids yet and that for me is a huge deal.
I'm back to my French Doc next week for another consultation...actually it can't be a consultation as neither of us have a huge understanding of each other’s language, so it's not as if we can "parle" very much. His english is better than my french though but I've learnt some interesting French medical words :D
Good old Babelfish will have to be used to again as my first venture with it to the Doctors was pretty successful :)
I think I'm also going to tell him (via babel on yellow sticky notes) about what else I have been trying. The funny thing is that when I first went to see him way back in July when I was basically house bound, that I thought the stress of leaving home, moving here and the whole language thing was really stressed me out and possibly brought on the UC. I'd forgotten about that until today, as at the time that he agreed. France doesn't like to give out steroids willy nilly for some reason. I've no idea what the UK is like, as I got UC in Australia, but over there they also just give out the steroid willy nilly once you’re diagnosed.
I've also just come to the realisation, that maybe I'm not supposed to have the drugs as there is another way for me...(don't have a go at me if you disagree...all I'm saying is this works for me right now as I'm in a different head space from you...I'm able to trust in stuff where others are sceptics). Seriously though...think about it...I'm thousands of miles away from home and the doctors I trust and that helped me last year...I've had a flare up...and the French medical system does things differently...what choice do I have?
Last year, it took over 10 visits to the doctors and countless blood tests over a 3 week period for me start with one doctor get nowhere as he didn't believe I was sick as I looked ok, to then finally find a doctor that would listening to me and get me the urgent help I needed that Friday evening. She was brilliant, and although she couldn't get a hold of a specialist while I sat in her office that Friday night crying...god, the memory of that time still makes me cry...she knew I was in big trouble and advised me to go the hospital if it got any worse over the weekend. She made an appointment for me first thing Monday morning and told me it was going to be ok..I wasn't the first to get this and unfortunately I wouldn't be the last. She gave me something to cling onto for Monday morning ...hope... oh and 100ml enema to put in, to get me through to Monday morning. Looking back now, I have no idea how I got through that Friday...I really should have been in hospital, but with the aid of the enema...I finally got a full 8 hours sleep and woke up on the Saturday morning feeling a slight bit better. Was it the enema, was it the fact I got 8 hrs sleep or was it the hope that I was going to get somewhere with this on Monday? Who knows but that weekend I turned a corner. At the time, I really didn't realise how bad I was with this disease...I was kidding myself big time.
I went down to the doctors at 7.45am..actually are you wondering how I managed to get myself to the doctors when basically I was house bound for the last 2 weeks? Easy..I didn't eat or drink a thing until I'd done what I had to do...I figured that one out very quickly.... So down to the doctors where she had already spoken to the specialist. She had also set up a quick phone call appointment for me with the specialist at 11am that day and a further urgent appointment for the Wednesday. That was the quickest I could get in..normally you're on a 3 week wait list and that's in the private sector in Australia.
Long story short, I talked to the specialist that morning, got an immediate connection with her over the phone..she's Irish like me living in Oz..and I trusted her to make me better. I don't think I've mentioned this yet, but basically when I was really ill I was having to go to the toilet anywhere from 15 to 30 times each day. Wednesday came around and my husband came with me to see the specialist as he really needed to know what was going on too. Basically she told me I was a very sick person...(my brain is still going...no I'm not that sick..I'm ok) and then the shocker...my organs were going to start shutting down due to the huge weight loss...9kgs in 7 days...and I wasn't big to begin with as I'd been doing some serious gym training for the past 3 years. She reckoned I had less than a week if I'd carried on the way I was, before the organs would have started to shut down. A scary thought. That's when I finally admitted to myself that I was really sick and in big trouble. Of course a colonoscopy was needed...yep..don't want to do that neither..scares me...but hell, I need to know what is wrong with me, but I'm being stupid...so time to get over this fear..face it and move on. Fast forward to colonoscopy day...scared silly...cried all the way to the hospital and cried while they put me under................woke up 30 mins late and first words out of my mouth..."Do I have Cancer..am I going to die?...I think I came around a bit quicker than they expected as my specialist came over straight away and said...nope to Cancer... I hadn't realised that was what I was really thinking was wrong with me! Once she calmed me down she said that she's come and talk to me in about 30mins and we could discuss the UC and how to treat it going forward. Do you know what it feels like to have a huge weight lifted off your shoulders...I was over joyed..no Cancer..it's only UC. I'm alive. The thing is...at the time I was happy that I only had UC...little did I know that I would get so depressed with the medicines I had to take each day. Even when it went into remission and I was just on the maintenance drug I still didn't feel right. It ranged from downright anger at everyone, to locking myself away from the world as I was depressed, although at the time I didn't think I was depressed so I didn't seek help. It took a very good friend of mine to come round to my house and ask me what was going on...(I'm crying again as I type this)..for me to realise this all I had to stop..I need to take control and pull myself together as all I'm doing right now, is pushing the people I love away from me by my own actions.
Back then I didn't realise that I was sabotaging myself...which brings me back to the beginning of this blog. I want to be happy and positive and enjoy my life. I don't want to be a negative person who only ever knocks people and won't at least try something new as they knew it just won't work. No I don't want to be hurt and let down if I fail, but at least I tried. It didn't cost me a cent (penny) to try Guy's stuff as it was all free on the web...and it's my choice to buy his book as I want to see what he says...as I have had a bit of success so far by simply changing my attitude and stopping being scared and stressed all the time. To some, this is hocus pocus...but what if this really is going to be the thing that helps me live a normal life. I'd be pretty damn stupid to pass something up like that without first trying it out. Like I said...this has cost me little to nothing..people spend more on coffee or cigarettes.
Anyway, have a great day..and give someone a break if they don't quite agree with you....I'm all up for constructive agruments...but not putting people down just because they think differently from you...
Wednesday, September 16, 2009
Things have changed and I've been thinking it could be related to any one of these items..or even all of them.
- Change of enema and now on a foam. Lighter dose than original enema, but I felt that the problem was only at the base of the rectum anyway.
- Youngest is far happier at school this year. Last year was awful for him and probably added to my stress
- Happier to be living in France now...I'm definitely no longer fighting it, I've accepted and the the next stage could even lead to enjoyment.
- Started taking a more positive approach to life
- Started a bit of self taught (from the web) meditation and deep breathing (I'll give anything a go and if free...all the better)
- Started talking openly again with with husband and kids about this illness and how I might be sabotaging myself. Kids possibly too young to understand everything, but I'd rather they know stuff now.
Long may it continue...I'll keep you posted.
Tuesday, September 15, 2009
I was talking to my friend in Oz the previous week over Skye and she knows all about my belief and talents to do with spirits. Anyway, to cut a long story short I told her that I had no signs lately and I was getting really pissed off with my UC as it had totally stuffed up the whole of our first summer in France and seriously I just wanted it gone. I also have started to recognise that the issues with my Mother really do need to get sorted soon. For the past couple of weeks there had been loads of butterflies around me and I asked her what that was a sign of, well turns out butterflies are a symbol of a new life bit something that I also did not know until recently was as the Dalia Lama explains of a butterfly that rather than carefree, it is uncaring: "The butterfly never meets its mother. It must survive independently and remains a stranger to affection. An animal nurtured by mother's milk, however, is dependent on another for its basic survival. A child who grows up in a cold and detached home environment is similar to the butterfly, in that kindness is sparing. Once an adult, it will be very difficult for that person to show compassion."
So I've thought about this and this could be very true of me in that I really did not until say in the last few years have compassion for any of my family members. However I have also had heaps of compassion for my own kids now as this was something I missed out on and made a real effort to show them how much I love and care for them. I did however have guilt issues about leaving them in childcare while I had to work.
I'm also now of the belief that I am the one who is sabotaging myself through my negative thoughts and fears. Why else would I get UC when no-one in my family has ever had it? So last week for what ever reason I found myself goggling "blogs ulcerative colitis" and the first one I saw was Martin's Number Two's who then lead me to Rich of The Mercy Seat then onto A Skinny Girl's Rant and Intestine Goddess...excellent blogs all about people in the same circumstances as me.
It's been life changing to say the least. We left Australia for a 2 year life in France 6 months ago and I have been in a really negative place since then. My UC flared up 2 days before we got on the plane and I couldn't get an appointment with my doctor at home before we had to fly. She had however given me a supply of steroids and after 2 weeks here I started them. They worked initially but once the course was tapered down and finished then the blood came back and hence my crappy summer stuck at home for most of the time. My French is crap still and although I eventually got to a doctor, he didn't understand what I wanted, which of course stressed me out more and more, but finally a break though last week and I get a foam based medicine which is what I think I need and hey presto, before you know it life is looking out and me and my toilet are no longer joined at the bottom!
Today I have little blood, I haven't had to do that mad dash to the toilets for a few days now and I'm feeling a lot more happier. Life is definitely on the up :D
Skinny Girl posted a comment today which made me think about my situation - "It is my personal belief that the reason I have UC (and others don't) is because it was something I could handle--something I am strong enough to deal with when others may not have been able to." I'd never thought of it that way before..but how right she is. I hope to be able to help people through this crappy disease but I do intend to get rid of it and not just keep it at bay.
I'll keep you posted on my own progress...I'm still looking for someone who is a Reiki Master or practises hypnotism near Aix-en-Pce, France. If anyone know someone, please let me know.
Sunday, September 13, 2009
So I've been thinking that I'm going to try and document my UC symptoms and any other illness or stressful times that I've had going back over day the last 10 years...I'm going to work in reverse and see what I can actually remember and add to it .
- 13th Sept - still a bit of bleeding no real pain, just the odd cramp in both my left and right sides that will go away if I lie down for a while. They seem to come and go. Started thinking about why this is happening and why the meds aren't working. Conclusion is that I have caused this myself by my mind and my negative thoughts. Going to try new things and see what happens next. Had a little win with the doctors and I'm going to try a foam for 2 weeks. After that I'm asking for steroids (via babel fish)
- Aug - Still on the enema. It takes forever to even make a difference and 4 weeks into it there is still blood. I'm frustrated with the doctor and my husband suggests that I should lie about the pain just to get the steroids. I don't like the idea of doing that so decide against. I'm not big into lying, honesty is the best policy. Take a trip to Spain, it's an 11 hr drive. No accidents on the way. Resort was pretty crap as it was a lot dirtier than I thought it would be and the accom was also a shocker. We did meet a great family though and the kids had fun. I didn't feel stressed but I was pissed off about the resort and accom.
- July - Holy crap, lots of blood. I'm totally stressed out with France and having no doctors that I can turn to for help. My husband gets me sorted with a specialist but he speaks little to no English so I have an immediate problem. He won't give me steroids as they are a last resort here in France, so I'm on a flipping enema. Have a major accident while I'm out. After getting over my total shame and embarrassment and explaining what has just happened, one of my husband colleagues that we're friendly with, takes me to her house and I phone him to go get my change of clothes from the car. Mortified doesn't sum it up, but I don't ruin the kids night out and instead once changed I head back to where we are supposed to be. (N.B. There isn't a lot of public toilets in France when you’re on a walk about in the town and given that I only got 30 secs notice I was buggered anyway)
- Jun - Tapering down on the steroids and by mid June the start of UC is back. Still stressed and finding life very hard in France. Trip back to NI to see family and friends. Decide not to see my Mother as it would be too negative on me right now and I still don't know how to deal with those issues yet.
- May - Steroids seem to work, no blood, very stressed still as my French is crap and trying to live here is a bit of a nightmare for me. I don't feel safe. My youngest is not happy at school...confidence issues etc so he's stressed and that stresses me. Furniture arrives and we move into house. I don't feel happy and I'm definitely not relaxed. I'm happy to see my furniture though.
- Apr - Left for France. Not excited but very scared. Lots of blood and after 2 weeks with it only getting worse I start using my supply of steroids. They take 3 weeks to work during which I'm totally stressed in France with the accom we're in, trying to buy a car, sort out insurance and get the kids ready to start school. Feel that I'm totally out of my depth here.
- Mar - Final most painful stage at the dentist. End result brilliant...better than I could ever have hoped for. Handed in my notice and finished up work. Very sad to leave work and cried all the way home. Very very sad to pack up my house and finish off school. I wasn't so much as stressed this month, but I was very very sad about everything was leaving behind. Last week of March and UC starts with a little drop of red blood on the toilet paper.
- Feb - Husband leaves7 weeks before us, so it's just me and the kids. I feel stressed as I'm working, looking after the kids, doing all the house work, going to the dentist and trying to get the house sorted out for moving. Handed in notice to work. Boss sad, but he understands and I'm not leaving to go to a competitor. No UC symptoms.
- Jan - A fairly good month. No UC symptoms. Had fun with the kids over the summer holidays. Started my dentist treatment to fix my teeth which will take approx 6-8 weeks to complete. Had lots of help from friends. This month I feel I'm stressed with going to the dentist and waiting to hear if my husband got the job and what the offer will be. Went back to work with a heavy heart. I do love my work and I get paid really well...more than I worth I sometimes think, but I feel it's getting on top of me.
- Dec - I ask my boss if I can take 5 weeks off work during the kid’s school holiday and he agrees with no problem. I don't think I felt stressful this month, but there is a build up in anticipation of moving to France. Christmas was really good this year which is rare for me as I actually I'm not very good at this time of year (even though I love it) as my Mother left us 2 weeks before Christmas when I was 16. Made a huge decision to go to the Dentist as I hate my teeth and I want them fixed now once and for all. Price is cheaper than I thought, so I happy with that. I'm scared of dentists though so this is a huge step for me.
- Nov - Huge storm rips through our suburb and causes millions of dollars worth of damage. Our house escapes with minimal damage. We are all initially OK, but later on I start to realise how lucky we were and I start to stress myself out again. I have a lot to be grateful for, but for some reason I start to feel out of control again. My husband phones me at work and asks if we want to move back to the Northern Hemisphere for a couple of years as he has just been approached with a job offer. I say Yes, I want out of here.
- Oct - Felt very sad at the end of month and very lonely. Off the steroids and just on Salazopyrin now. Still getting headaches. (N.B. Looking back now I wonder if there is a connection with coming off the steroids. The steroids made me feel very happy until I was taking say 30mg a day)
- Sept - Tapering off the steroids and just on Salazopyrin now. Getting headaches.
- Aug - Steroids being tapered down and start maintenance drug Salazopyrin
- Jul - Diagnosed with UC. Lost 7kgs in 9 days. Did a colonoscopy and started steroids 50mg per day.
- Jun - mmm - this was the start of a very bad time. I had my first coffee in months and that appears to have been the trigger for what happened next. Bad diarrhoea, blood and a feeling of not being very well at all.
- May - Get shingles, but I'm very lucky and got to the doctors with the first 24 hrs and got tablets to counteract the pain. No time of work, but a pain where there was a burning sensation.
- Apr - Again a fairly normal month for me and I got the flu injection this year.
- Mar - Work fine not too stressful. Kids and husband all ok. No medical issues.
- Feb - Bad diarrhoea - Last about a week. It scares me as there is a little bit of blood and we're about to go to Canada for 2 weeks skiing the following week. Go to the doctors and get nothing from him. After seeing a little bit of blood, I decide to use the suppositories again. Take Imodium to save any hassles on the plane. Have a great holiday even with the kids and my husband getting sick. Getting back though I notice a huge loss of weight (4kgs in 2 weeks). This I put down to skiing all day and the initial diarrhoea.
- Jan - Nothing significant that I can remember, but looking forward to holidays. Work projects good and although behind this doesn't worry me as I have containment plans in place.
- Dec - Usually state of mind for Christmas.
- Nov - Blood appears again. I went straight to the doctors and got a supply of suppositories. Take 1 at night for 7 nights. Blood clears up within a week.
- Oct - Nothing of significance I can remember
- Sept - Nothing of significance I can remember
- Aug - Still loads of blood, but no pain. Then the blood just stops the week before I'm due to have the operation. I had went to the doctors and gotten some meds. I assume they helped. I still have a very bad cold and when I go for my colonoscopy they won't put me under as they are worried about my cough. Instead I'm asked if I want to give it a go without going under as I've done all the prep work. Scared silly but agree. I only last for the first 50 cms before I ask her to get the scope out.
- Jul - Celebrate my 40th birthday and go the doctors as I'm scared now and it's not going away. He talks me into colonoscopy. Even more scared.
- Jun - More and more blood appears. Start of diarrhoea. I start to get stress and think I have cancer. Still don't go to the doctors though.
- May - The first glimpses of blood on the toilet roll. I didn't think there was anything to worry about.
Significant events prior to May 2007
- 2006 - Changed jobs after working from home for 3 years. Very happy with the money, but sad that I have to return to an office
- 2002 - 2nd child born - back to full-time work after 7 months off
- 2001 - Sold one house and bought a new one...found out I was pregnant again...dead happy
- 2000 - Birth of #1 - scared, tired, but very happy - Asthma goes after birth of first child - back to full-time work after 8 months off
- 1999 - Moved to a new state in Oz
- 1998 - Nothing significant
- 1997 - Immigrated to OZ
Diagnosed with asthma as a kid...mine was termed as "Nervous Asthma" ... asthma used to come on when I was stressed or freaked out...especially when I was stuck up on a stage to do Irish dancing as a kid..and although I loved going to learn on a Saturday morning, I hated the festivals and was crap at dancing :)
I have wondered if the nervous asthma was connected with UC, but they don't seem to be able to find a link...I think it's nerves and stress...but hey, how do I prove that. Anyone got any thoughts on that connection?
Saturday, September 12, 2009
For any of you with UC, you know that when your in the middle of a flare up, you don't just let one go in bed unless your pretty confident nothing is going to happen. I have to say that is the first time I have farted in bed in over 3 months and I'm pretty damn proud of myself. I did get up and go to the toilet anyway, just in case that was my 30 seconds notice :)
Friday, September 11, 2009
So I’m not going accept that I have to live with this forever and it is going to go away...I know it is now...between a couple of blogs I have been reading in the last 4 days, I now have more answers in the last week than I’ve gotten in the last year...I’m not going to be stupid though and come off the maintenance drug right now...but I’m going to also do the positive thinking and get as much acid out of my body as possible as I really do believe that was the start of my issues. I honestly believe now that if I can control my mind to stop thinking in these negative patterns that somehow my UC will stop. I’ve listen to Guys Cohen's recording twice now...not every day... and to be honest I can see a bit of a difference already. I’m going to try and find an English speaking Reiki Master here in France and look into some yoga as I think these are the tools for me going forward now. I can’t say that I won’t be negative again as with 2 little kids and a long way from home and friends, well the world sometimes does get on top and I feel I have a huge weight to deal with. But time to get out there and enjoy my time here, 6mths have passed already in a negative state with UC keeping me house bound through most of the summer when really I should have been having fun with my kids and husband....it was those darn negative thoughts again, but I say bullocks to them..time to move forward before I really screw myself up.
So I really have no idea what I'm going to put up here, but I know one thing for sure, this last week has lead me on a very different path for my UC. I've had stuff running around in my head for a while now, but this week has pulled all that stuff together and I've decided that I'm getting rid of the UC and the prison like sentence it is currently subjecting me to. No more I say!! So how am I going to do this and how long will it take for me to succeed? No idea, but watch this space and see what happens.
One thing I need to tell you is that right now I'm in a mild flare-up and I'm on the big yellow pill maintenance drug called Salazoyrin. I take 4 a day..we'll at least I'm supposed to, but I have this shocking memory problem at the moment and even though I may have taken the pills like 30 secs before...I just can't remember if I really did or not. I have a plan to solve this and every time I take one I say out loud to the kids and my husband that I've taken my pills :D
This week has been a real eye opener and I've decided that it's time for my negative thoughts to get the hell out of my life. I have a feeling that me being so stressed out over issues that really should have been dealt with years ago and they are what is causing this negative thought pattern and it's time for them to leave my body building once and for all and they are to take Miss UC. Be gone, I'm done with all of you.
I'm not going to go into great details about all my issues, but basically they all stem from childhood. I need to deal with them and get rid of the negative stuff somehow.