Craft EPIC fail

So, dear CC's wedding is FAST approaching and I have been uber busy with the nuptial craft and craft projects and battling with my brain over the developments of the past few weeks. I am EXHAUSTED but, all in all, very content with my lot in life!

But there has been a craft epic fail creeping up on me the whole time. If you've read my post past you will see some pretty nifty craft project emerging. I admit I have been a wee bit obsessed with making purses and bags. Which have been duly made. But I realised this morning that my BEAUTIFUL 80's full skirt dress that I want to wear for Saturday's celebrations has no accessories to go with it. NONE. Not even shoes. Bum. Bum, bum bum bum bum.

And as my friend Bib's happily pointed out, I should have been making one to match my outfit NOT one out of Starwars fabric. Though this is infinitely cool, it does not, in any way shape of form, match the dress.

80's superb-ness!

So now I have to fit in a rush shopping trip to try and match these colours! Man, I hope I can sleep all Sunday after this week! Not even my emerging craft skill could get me a bag made by Saturday. NO TIME!! Image CC's face if I had to explain that her cake toppers were not done but my shoes and handbag are FABULOUS! 

Ah well, gotta love a shopping challenge :) 

Partial craft success!

Hooray! The cake toppers for CC's wedding are almost done! The owl and the pussy cat though, sadly, will not be furnished with a pea green boat as it became painfully clear that I should have started this project about 2 weeks ago!

Still they look really cute! Just the fine detail to do tonight (which I may scribble on in pen as my fine brush work SUCKS) and then we are done!

An owl and disjointed cat

A contented little owl! 

Just have to finish these, deliver some table cloths to CC, shop for shoes and a handbag and a hair thingy (see 'craft epic fail') and bake to gluten free quiche Lorraine. All by Friday night. And work full time in the meantime. And all this with no food in my... should be interesting! 

Day 8 and all is...well?

I have decided that is this 'diet' is to stand any chance at all of surviving, I do not have a place in my life for the Fortisip food replacements. None. At. All. So bring on the shakes.

I honestly still do not know how I feel about this. Lunch time makes me feel miserable but I can't let myself focus on that as today has been somewhat of a breakthrough. Trapeze on Tuesday was EXHAUSTING and painful as the my newest fisti-bump is in a very uncompromising place for balancing on a bar, but I am glad that I went. Normality, or my slightly skewed semblance of it (as I am aware it is not in everyone's fortay to go swinging from ropes as a pastime) is so important to hang onto at times like this, where everything else feels so way out of my control. But I am trying to balance this out so that I am not going into hyper denial and ignoring the very blatant fact something ain't right!

Yesterday I did feel better for the exercise, as much as I am loath to say it! And today, I feel even better. My stomach has been making the noises I would normally associate with a complex GCSE chemistry experiment and that has been a little embarrassing at times and my tiredness shows no signs of abating but my general pain and discomfort from the fistula seems to be abating.

Fingers crossed that this is doing the trick. I try to be positive, even with all the failed treatments I have had at treatment in that past, so maybe this is actually getting me somewhere. Maybe.

Which is best; not eating properly ever again and forever being sustained by the soul-less nutrition that is Fortisip or major surgery.  Is that even an option? Some knowledge would be nice...

No real reason for this, just loved the van! 

Day 5

Well, Monday comes screaming round fast and another week begins, already much better than the last!

What a gorgeous weekend it turned into! After an indulgent craft-a-thon on Saturday (with lots of rest and naps for the heroic boy) we ventured out into the bright light on Sunday and had an absolutely lovely day in the sunshine. We planned wedding bits, went wandering around Bristol (a FAB place to be in the sunshine) sat on the grass by the iconic suspension bridge and set the world to rights for hours. It was so lovely to shoot the breeze after the week we've had and nice to think about the future. I love to talk to MH. He is my sounding board for everything but it was nice to talk about something other than hospital visits and test results and if, buts and maybes. Not that we avoided the topic, but it certainly wasn't lurkng like a black cloud on a sunny day.

If you have been through or are going through something like this, I cannot enforce enough the value of having someone (or something, like a blog) to talk stuff at. Half the time, we're not stupid and know our bodies well enough to know how serious or not a situation is. Talking at people helps me set my mind, asses the situation for what it is and formulate a standard emotional response/ level I can live with, and expect others to live with, for everyday... survival I guess. I consider myself exceptionally lucky in that I have MH but I never want to be complacent of that. He has his own emotions to deal with in amongst all this and it would be selfish of me to over run that with mine all the time. Considering his feelings in all of this helps me to stay grounded and SANE which is important.

But this blog is in existence so that I can rationalise things outside that sphere and also in the vain hope that someone going through something similar might read it and take some form of comfort or reassurance from it.

But today is hard. I know it may sound naive but I never quite realised how much daily life revolves around food. And I never realised how much I enjoy food. How much I love food. Mmm. Fooooood.

Its another one of those things that is making me feel a lot less than normal. Work is, weirdly, the hardest. I never realised how much my day was divided up by and apportioned to food. Over the weekend I can honestly say only twice did I really feel sad and almost distressed about not being able to eat. Mind you, I've not told many people about the liquid diet so it is kinda my fault! I am sure, had he known, our dear neighbour, J, would not have, when describing his new house and its surrounding are, have spent 5 minutes eulogising a pork belly sandwich that can be purchased from his new local deli. No joke, his words actually caused me to whimper and audibly to such a level that he stopped talking as he thought there was something wrong. And there was; I had just fallen a tiny bit in love with a bread based snack!

I do wander what my reluctance is in telling people that I have not gone on an extreme weight loss program before the wedding but am tending to my mutant gut in preparation for a major operation. And I think it comes back to what I wrote about earlier. It makes me not normal. As my work mates sit at their desks and tuck into BLT's, piping hot pasta and pot noodles, I am hunkered behind my screen and 'eating' what can only be thought of as the love child of lemon curd and Slimer.

I hope that it gets better from here-on in. I'll keep you posted.

Stone cold crafting

One of the best things to do on a rainy day?

1. Hit the local art/ craft store, hard

2. Roll out the hoodie, get comfy and get ready for some...

3. Stone Cold Crafting!

The craft in question today? Making a Owl & Pussy-cat cake topper for my friend CC's pending wedding... next weekend. May have left it a little late but I like to think that I thrive under pressure. I hope!

I think I may have been lulled into a false sense of security by my recent crafting successes; a lovely little coin purse made from retro fabric and a half completed clutch bag, also retro fabric but this time duelling Jedi's no less.

Updates on the Owl & Pussy-cat will follow. Just need to over come the crafters-fear; getting started! 

Nil by mouth, kinda, two days in

Liquid diet is a term which does not really leave a lot to the imagination. It is basically exactly that. A drink that replaces your daily intake of food but on a purely nutritional level! I am only two days in and am already wishing they could master a ham, egg and chips liquid replacement.

I left the clinic on Wednesday with a prescription for a months supply of Fortisip food replacement drink, a promise that, after my week started pack I can select the flavours I like best for then on it and a fear-laden warning, delivered in much the same tone as the old man used to warn the children 'do NOT stray from the path' in horror films, to ONLY drink them cold, I set of into the bowels of the hospital to collect my weeks food shopping.


It turns out that a weeks worth of Fortisip is HEAVY! I do trapeze classed for 2hrs a week and am used to the weight of my own body hanging from my fingertips but this felt worse. The stagger back to the car was more than exhausting and left me very thankful that I had not cycled to the hospital that day (sore bum preventing it!).

So here is where the 'immediate' application of my liquid diet hit the skids. I spent all day mulling the appointment over and leaving talking it through with MH until I arrived back home. MH and I both have pretty hectic  lives and we have got into this oddly reassuring habit of a daily debrief which we carry out in the kitchen or bedroom of our lovely little home with both or either of our cat's weighing in with their opinions.

I got home first and offloaded my supply, stashing it away in a cupboard where a full two shelves are now dedicated to the 'range'. The lovely NHS paper bags went in the recycling so our kitchen went back to normal, despite the 'secret' lurking in the cupboard!

MH has well earned his title in the time we have been together. He is my rock, my best friend and my souls home... OK mush over. Before we got together almost 3 years ago, I never had the level of unswerving support as I have now. I can breakdown with him but, more importantly, I can laugh with him and cope with him so when he suggested he mirror my liquid diet with Slimfast in preparation for our wedding in August, he brought the focus back for me. It was then also decided to have a last 'hoorah' and impromptu feast. Needless to say that I picked foods I do not normally or regularly ear for fear of disrupting mutant gut. So a gastronomic feast kicked off with an appetiser of cool blue Doritos and sour cream and a main course of double pepperoni pizza and spicy chicken wings all washed down with Big Red (otherwise know as full fat Coke), awesome.

Yes, not eating sucks as it is one of my  most favourite of social past times. I love to cook for friends and loved ones and love being gathered round a good feast to catch up and share. But this means I am preparing my body as best possible for the next stage. I am giving my mutant guts a break and giving myself an amazing chance at being as well as possible for August where I stand in front of all my friends and family and marry MH, HOORAY!

NB Forest fruits Fortijuice = shampoo after taste. There is no way of being a grown up about this...yuk

Diagnosis and decisions.

OK, so, bombshell dropped, surgery is pending and my brain finally feels oddly free. Its like for 6 years I have been ignoring this as ever being a possibility and yet, here we are.

Prof was very understanding, despite the fact that he must have to explain this procedure a hundred times over in an average month. In that respect it was like a normal clinic visit (and having had these every 6 weeks for the last 6 years, you get kinda blasé about it) including the obligatory examination

Prof always like to take a look at what he is working with and, usually, there is some kind of audience for these examinations. Last time it was a student nurse who looked on in awe and was suitably impressed by the ridges in my finger and toe nails that are apparently a sign of a past attack that has been severe enough to disrupt their growth. Honestly, there is no end to the stuff you can learn!

On this occasion, it was a little crowded. Lovely IDB nurse came in and both she and Prof had to be chaperoned by a trainee nurse who helped me preserve what little dignity I have left by draping me with a clean sheet. Lovely IBD nurse was there as emotional support for me as Prof was worried that, due to my 'stoic' nature (his word not mine!) he may have been over burdening me with details and I guess Lovely IDB nurse was there to help control the ensuing breakdown he felt sure was about to occur. Poor MH, I usually save these for him and this instance was no different. Well, I wouldn't want to deprive him of that would I?!

There is one thing that always occurs to me when I have these exams and I am sure it has crossed all of our minds at some point or another during medical exams; what is it in a doctors nature that, when the find an area that is painful enough when poked to make us emit a noise like 'eerk' wince spectacularly, do they immediately have the desire to poke it again, harder and wince along with us? Is it something they teach in med school? Sympathy through repeated pain?

Sore tummy was poked, mutant and angry bowel area was identified drawing 'Hmmm's' and 'ah' from a thoughtful Prof and then it was time for the left hand roll, as I like to call it, exposing my bottom and woes to the world. Having the novelty of two experts in the room and hearing a whispered conversation and shuffling of equiptment behind me, I peered over my right shoulder, slightly afraid at what I might see.

What I did see made me laugh despite the situation. Lovely IBD nurse has extracted from somewhere the standard latex gloves and was assisting Prof by illuminating my affilicted derrière with a Duracell professional torch of such a size it could have been used as an offensive weapon! Now I know our NHS is a bit short of cash but its really too much when specialist have to raid their tool boxes for equipment!

Examination done and still inappropriately giggling, I dressed and returned back to Prof's office for the diagnosis.

Surgery and Stoma is the long and the short of it and my brain was entirely focused on that. So much so I almost missed the words 'dietician' and 'liquid diet'. It gets better and better!

This week has been brought to you by the letter 'W'

'W' as in 'Weird' and 'Whaaaaaa?'. Pretty much sums up how things have been in our household for the past week.

On Wednesday this week, I realised that I have a chronic disease. One that will never, ever go away and one I will do battle with all my life. I was diagnosed with Crohn's over 6 years ago so you could surmise from this that I am far from a quick learner and/ or a little dim but bear with me!

Tuesday morning I woke up focused but numb; it was time for the annual MIR. As I am sure most of you reading these rambling will have an IBD of some kind, I am sure you will be familiar with the process and, if you are lucky, will not be scared witless by it!

Now, irrational fears are common place; many people are afraid of spiders, bugs and inanimate objects like zips and beards (true fact; its called Pogonophobia). My irrational fear is of a giant, clanking, humming magnet. One that, in this instance, went by the name of Tim. That's right, they named the buzzing behemoth Tim. Ironically the same name as my boss, who probably could do with being able to instil the same level of fear.

The same irony was not lost on MH (the man in my life who, after the events of the past month have earnt him the permenant title 'My Hero' and shall, from here on in, be referred to as such) who took great joy in pointing that out, along with worrying about the chances of having been in an accident that could have left tiny shards of metal in his eyes. Which was a lovely thought to have. When your head is about 2 cm away from a giant magnet. Brilliant.

If you are having or are about to have an MRI, there are some things that you may not know:

• It is not MANDATORY to listen to Radio 1. This may come as relief to some of you. I feel restricted by the headphones and being drip fed Chris Moyles; it all adds to my irrational panic, so cotton wool in the ears (that's right, the comic books of old were right!) is a better alternative for me when it comes to dulling down the German techno beats the machine generates. 
• As the scan is focused largely on the pelvic area, you don't have to go in head first, winner. 
• You can have a nominated hand holder come into the MRI room with you, provided they do not have any metal in their bodies, there is no chance that they could be pregnant and have no heart condition. As MH works with Coffee (greatly reducing the chances of an industrial accident pinging shards of metal into his body, despite his fears), is a man and has the heart of a ox, he holds this position.
• Contrast dye is common place and used to highlight the magnetic differences in the softer tissue areas (MH is also a physicist so to have an MRI with him on board is a very educational experience!) and the running around after it is administered is normal as the dye works super-quick and they have a narrow time frame to work with. Alas, the dye combined with massive magnetic charges has yet to imbibe me with X-Men type powers. Boo. 
• Deep, yoga style breathing (short breaths in, holding the breath for a few counts, slowly exhale) helps me to stay a bit calmer but, more importantly, helps me to soothe my shakes (part fear, part adrenalin) so that the picture won't come out blurry. 
• If you do find MRI's stressful, as I do, give yourself time to recover afterwards. As a good friend explained to me,  it is a traumatic experience for some people, so let yourself come down from it, give yourself and your appointed hand-holder some TLC and a chance to absorb the experience. 
• You can get Valium from you GP to help keep calm, but the timing is a little difficult. I managed this one without meds but that last time I had Valium, it only started to work 2 hrs later when I was enjoying the aforesaid mentioned time out with MH and nearly fell of a stool in a friends coffee shop. I looked like a drunk! 

You may be wondering how I can go through all this and not really have the realisation that I have a chronic disease. I shall try to explain further.

I have so far managed my Crohn's thus far through constructive denial. True, I manage on a daily basis with meds. A pantheon, no less, over the past 6 years including:

• Asacol
• A variety of steroids
• Azathioprine (still on daily)
• Infliximab (taken intravenously for one year, but no more!)
• Adalimumab (epi-pen style shots, two every two weeks into the fatty part of the thigh. Apart from when I miss and get the muscle. Ow)

And when I say manage... I also suffer from fistula. Nasty ones. A spaghetti junction of  fistula if you will. With the Crohn's itself, I manage what I eat. I know what triggers to look out for, I know to make mental notes of where toilets are in any new place and I know that exercise and plenty of joy in my life are the key to my health. But the fistula, these are the true nemesis. 

The very nature of Crohn's means it is all internal and, to a larger extent, I have been able to hide it away, so to speak, and carry on regardless. But the fistula are my daily reminder. The hurt and discharge (Nice! Another side affect of Crohn's is associating yourself and your bodily functions with words you NEVER wanted to hear used to describe any aspect of your anatomy!) and the hospitalisation due to chronic and widespread infection are a very outward sign of what is going on inside. 

And thus the culmination of this first post. My fistula have gone critical. Code red people, code red. As the Prof said (my specialist) it's not really a good sign when your MRI results come through in time for your clinic appointment. Which is the day after. At 9am. And they are marked urgent. Gulp.

A review of the results came along and diagrams were scribbled on bits of paper in biro that were supposed to represent important parts of my physiology. All the while sympathetic looks were provided courtesy of the lovely IDB nurse. Then the 'S' words were mentioned. Surgery. Stoma. (Actually is was 'Poo bag' which I baulked at slightly. I know the proper word, please use it!).

Then, I have to say, I stopped listening. Crap. My body is broken. Bugger. All the denial of the last 6 years and the 'management' have brought me here. To a point I was weirdly unprepared for. How do I manage it now? The proposal of surgery and the resulting stoma is a situation that I cannot control, am not resolved to and have no survival mechanic for. Gah.

So what happens next?