Newly discovered gorgeous big sis!

Wow, this is definitely turning out to be the season for being jolly, for I have been blessed twice already, with the discovery of two extremely special people in my life. Not only is my supercus the bestest cus I could ever wish for, but now his delightful best friend CBB has become my new adopted big sister! And I have never had a sister before. Yippee! How lucky am I! I feel totally brimming with family love now and my heart is practically bursting out of my chest (and no not my boobies!) it is growing at such a fast rate with all that sweet loving. My new sis is everything I would wish for in a big sis - absolutely beautiful both inside and out, extremely talented in lots of ways, but particularly in the arty/crafty sense and design sense as she is always creating and making stuff and is just so COOL. On top of that she has the heart of an angel and is wonderfully receptive and sensitive and understanding, is so funny and just sooo lovely. I love her to bits already. THANK YOU GORGEOUS SIS, I LOVE YOU! XXXXXXXX

Brimming with special family love for Supercus!

I hope none of you mind me going on about how utterly warm and fuzzy I feel right now, because I have finally found someone in my family who loves and respects me, and who doesn't seem to expect anything in return and I just want to shout it from the roof tops! There's no pay back, no debt, just pure love and warmth. He is my super duper wonderful cousin and I am going to call him my supercus, or SC for short. You may wonder why I have only just made this discovery, and you would be right to in a way, because it may seem very weird to not properly know your cousin when you are in your late 20s. But some of you may understand that some family members are just not close to hand to get to know, or maybe when you meet once or twice a year at family occasions, you or they are not in the correct frame of mind, or even have the right maturity to talk about stuff on a deeper, getting to know level. But in my mind none of that matters because now we are both at the RIGHT time to want to know each other, and can choose whether we want to be in each other's company or not, or choose whether to phone the other for a chat, and wow it feels nice. It feels lovely actually.

I cannot begin to tell you what a wonderful person my SC is, and we have a connection that I never knew could ever exist. He already means more to me than I could ever express in words. I never knew family love could feel so utterly fabulous. But long may it continue! Here's to fabulous cousins! Oooh, I'm all gooey and fuzzy still. I LOVE YOU SO UTTERLY BUTTERLY SUPERCUS x x X X x x

Crohn's and Me (First Chapter)

So, after finally deciding that I would tell you about my health problems, here I am, about to share with you my some of my life story. I expect you have guessed by the title already that I suffer from Crohn's disease, which is a disease potentially affecting any part of the digestive tract - from the mouth to the anus (bum). But with a lot of people Crohn's mainly affects the small intestines and sometimes the large intestines too (or small and large bowel). I personally have had Crohn's in every part of my digestive tract, but for the most part of my life since diagnosis, it has mainly affected my small intestine.

The basics

So what is Crohn's? Well, it is basically severe inflammation. When it occurs in the intestines, it makes them really narrow so that a) food finds it hard to get through and as a result it can cause vomiting b) it causes A LOT of pain and c) the tissues and walls of the intestine are damaged so that food and nutrients cannot be absorbed into the bloodstream and as a result often people with Crohn's lose a lot of weight. It is incurable and chronic. There are so many other related factors too, which in time I will tell you about but that is the bare bones.

The long road to diagnosis

I was finally diagnosed with Crohn's in 1991, when I was 11 years old. I say finally because it is suspected that I suffered with it for at least several years before, if not many years before I was actually diagnosed, and I remember vividly how extremely ill I was when my dad decided to at last present me at the A&E of our local hospital, in the hope that someone would be able to help. Thankfully at that time, an excellent paediatrician wasted no time in admitting me and started the numerous batch of unpleasant tests that I needed, in order to find out what was wrong. By the point that I was taken to A&E, I could not walk and had to be carried in his arms, for I was practically a skeleton and extremely weak. I was in agnosing abdominal pain which wracked my whole body, and vomited every single thing that was put in my system, including water. To be totally honest, in my own head, I was unsure whether I would live, because even as a child I could feel myself fading away, but I remember praying to God nearly every minute of every day, begging him to save me and to make me better again, as I knew that I really did not want to die. I had come through too much to give up by then and I always had a zest for life and to be a happy and normal little girl.

Commencing treatment - and NO MORE FOOD for a while

So thankfully, after many many tests and after being bundled off to a Professor in Gastroenterology at a major hospital, I was finally diagnosed with Crohn's disease. I was relieved to have a name for all the hell I was going through, although at the same time I didn't really understand what it would mean for me. I don't remember ever questioning what would happen in the future to me, I just accepted it, as many kids do who are ill. I remember observing that from the many a time spent in hospital from thereon, that the children always just got on with their life and just accepted what was happening, whereas the parents would worry for hours about what might happen in the future. At that time the treatments available for Crohn's disease were fairly limited and the only two options open to me were high doses of steriods, which were thought to suppress the inflammation, or to put me on a totally liquid diet, which was to be drip-fed into me via a gravity bag and connected to a nasal gastric tube passing through my nose, down the back of my throat and into my stomach. The Professor decided on that because I would need feeding at night and a lot through the day, because I had lost so much weight and needed feeding up, and also because how widespread my disease was then. I didn't have any choice back then as to what treatment I would prefer and was a rather unhappy about the thought of being fed like that (and of course NO normal food or drink) and my main concern was how uncomfortable the tube was at the back of my throat, but the nurses and doctors assured me that it would only be for about 6-12 weeks and then I could start re-introducing normal food again. So although the first night I was a bit tearful, I decided that I would just have to deal with it and look forward to getting better. Unfortunately I was in hospital for quite a long time as my body kept rejecting the liquid food and I vomited many times a day. The worst bit was when I vomited my tube up (which happened quite a lot) as then it would be going into my nose but coming out of my throat, which was distinctly unpleasant, and then had to be removed quickly before I choked and then re-inserted again. But gradually, my body started to accept the feed and ever so slowly started to calm down. The nurses did not let me out of hospital until I was fully independent of looking after my tube feeding regime myself and also until I could "sink" my nasal gastric tube by myself and test that it was in the right place by using a syringe to withdraw my stomach juices and using litmus paper to check if it would turn pink and that it was stomach acid. If the paper didn't turn pink, there was always a possibility that I had passed it into my lungs and so I would have to fiddle about with it or remove it and try again to make sure it was in the right place. So by the end of my hospital stay I was all ready to cope at home. I was 12 years old by then as had my birthday in hospital.

Adapting to a new life and new school

So began my new life with the tube and my gravity feeding bags. Unfortunately the hospital didn't have a spare drip stand for me to have at home to start with, so my sweet father decided to rig up a load of strings everywhere in the house he could think of where I might go, with hooks on so that I could hook up my drip bag and so it would still be higher than my head and would still work, seeing as it worked on gravity only. So the various strings and hooks (including one in the toilet!) were quite a source of amusement and I quickly settled into a routine at home. I didn't enjoy being fed all through the night as it made me sick and very uncomfortable and full, but it was something I had to put up with.

As I was at the age to start secondary school, I had already been missing out on being at my new school and making friends, so when I was a bit stronger, it was decided that I should start at my new school. There were a few obstacles, seeing as I was being fed by gravity feeding, there was no way that I could go from lesson to lesson like that, so instead it was arranged for at least 2-3 hours a day to sit in the welfare assistant's room/sick bay with my bag hooked up on a curtain hook. I had to sit there and miss several of my lessons, but instead did my work on my lap and was allowed a visit in break times by my best friend, seeing as I couldn't go outside to play. It seemed to work fairly well, although it was a worry that I was missing out on quite a bit in class, but nevertheless I carried on like that for at least a year or so. In the end however, the hospital and local authority offered me one of the first portable feeding pumps ever to be invented, which meant that the liquid was machine pumped into me and I could carry around the heavy machine on my shoulder with a shoulder strap. I always had to be careful of all my tubing, as it was always so long and often tripped up on it when I wasn't looking what I was doing! But although some cruel pupils thought it great to poke fun at me carrying this machine around with me, it gave me a great sense of freedom, because it meant that I wouldn't have to miss out on any more lessons, as I could carry it with me and just hang it on my chair. So life was much improved. It did prove difficult however travelling to and fro on the bus, as I always seemed to be at the bottom of a bundle (where I was at the bottom of the stairs of a double decker bus and kids would all jump/fall down the stairs all at once when the bus was stopping and fall on top of me. I would try my hardest to not be standing near the stairs, but was not always that lucky. And you can imagine how funny I looked whenever I had to carry not only my tube feeding machine pump, but also my games/gym kit as well as my normal rucksack with all my books and folders in, and then PLUS my violin case which was rather big too. I don't actually know how someone as small as me could manage with all that weight and bulk but I guess just fierce determination. And I guess I had no other choice. So on I struggled for several years, until it was suggested to my parents that they try and get me some local authority transport to take me to school, and that I would most probably be eligible. So in the end, I had a cab take me to school and back every day, which was quite a welcome because I got exhausted travelling on the bus every day with all my equipment!

http://rutharoo.blogspot.com/2007/01/crohns-symptoms-related-problems-and.html

Coming clean about my (ill) health

Ok guys and dolls, I have decided to tell you the truth about my health - or shall I say ill-health. I did agonise a little over whether I wanted my blog to include stuff about my health problems because I wondered that maybe for once I would like somewhere where I could get away from it, because there aren't many ways to escape it, seeing as its there every day of my life, reminding me nearly every second that it's there. But then I thought, what the hell, maybe I should talk about it, as maybe I don't talk about it enough. To be honest I don't think I do, because I often get worried that I might bore people or that I might burden them. Interestingly, I am fine with talking about it with other sufferers and I like to be able to help them if possible, but I am not all that good at just telling other people what's going on for me. You see I like to try and protect people from my problems. Or maybe actually I am protecting myself because then I don't have to answer questions that I might not feel comfortable in answering. Or I worry that if I talk to people about real stuff, I might push them away. But whatever the reason, seeing as my body and what happens to it is pretty important to me, I thought that I would actually choose to share some of what happens to me(and indeed has already happened) with you. Now you might get really bored, or think that I am moaning, and so I will apologise profusely in advance if you feel like that, because all I can do is be honest with how I feel and what's going on in my life. I guess I am kinda hoping also that just maybe, by the act of me sharing some of this personal stuff with you, that maybe some of you may actually benefit too, and that you will feel able to share some of your stuff with me, because we all go through stuff, whether it's bad or good or somewhere in between. And I like to think that I am a caring kind of gal who has respect for others' feelings and thoughts and I like to think too that I'm really easy going and down to earth. So bring it on!

Amethyst ornament/bookend

I love this piece of amethyst which can be used either as just an ornament on its own right or as a bookend if you have more than one, or even a paper weight for that matter.

Lovely healing stuff

As you may or may not have gathered, I am a complementary therapist and as a result I love all things to do with healing and health. So I am always seeking new products which I can either use in my own therapy/treatment room, on my own clients, or that I can sell. This coming new year I am hoping to start my own website selling products which I hope will appeal both to other therapists and the general public. So gradually you might see more pictures of items that I have acquired. If any of you are intersted in buying any of the items you see, then just let me know. Otherwise, I hope you don't get too bored of seeing stuff that I like on here. I need some more healing stuff myself seeing as I need to heal that wound of mine, and am using my crystals to help me. Might have to go and visit another therapist too to help me along the way and get me back on the right track. Its mad, but although I seem to be able to make many of my own clients better, I never seem to be able to do it for myself. Oh well, I guess it is always harder to do that. Happy healing to everyone!

A very strange but special christmas

Well, I can't believe how weird it feels to have the chance to stop still and reflect on what has been happening for me these past 3-4 weeks. You see in a space of a month I have become increasingly ill, had an urgent CT scan, been summoned into hospital urgently, underwent my 6th major bowel surgery, got discharged from hospital, then got admitted again after a few days, just managed to get out of there in the nick of time on Christmas eve, AND spent a beautiful few days with my gorgeous cousin, his gal and my boyfriend. Its all a bit mind blowing to tell you the truth! But at the time you just deal with it (I expect you all have had experience of that) and then when you actually get to just stop, the enormity of what you have just been through suddenly hits you like a tonne of bricks. But I am not feeling unhappy about it, just a bit dazed I guess. My head is spinning a bit but I am sure I will get back down to earth soon.

I am still trying to come to terms however with the fact that just up until a few weeks ago I had managed to get my body in reasonable nick and now suddenly I have a huge hole in my tummy (I'm sure other folk have had worse but I have never seen anything like it) and now I have to have a district nurse come in and re-pack and re-dress it everyday. Apparently it could take several months to heal up properly. But I know it will get better, I just need to be patient. Things will be back to normal soon. In the meantime I have been told to REST REST REST, something which I am not too good at, hence why I am writing this when I probably should be in bed. Ooops. Looks like I am heading for another telling off. Tee he.