I haven't updated this blog since my surgery was postponed - and I won't be updating it again after this.

I have been overwhelmed by lovely texts, emails, cards, tweets, DMs and Facebook messages and I have read and appreciated every single one of them. I have been god awful at replying to them but I am not in the right head space. Please, please know they were/are appreciated though. Really! Thank you.

The 'experience' of the last few years, and more profoundly the last few months, has changed me in ways I always hoped it wouldn't. I am not the same person. And I am not a better person. 

I am reminded a lot by those around me that when you are going through hell, you should keep going. I am trying to with the help of various people.

I will no longer be sharing any of the details of my 'progress', with hindsight I have no idea why I ever wanted to blog about any of this in the first place, but hindsight is a wonderful thing. Maybe when this all seems like a distant memory (hah!) I will write about the final chapters of it. I don't get the impression this book has final chapters, but we shall see.

I want to be a good daughter, sister, partner, friend and entrepreneur. I can be.

To bizarrely (mis)quote Liam Neeson in Taken, if I could talk to the ailments plaguing me at the moment then this is what I would say...

"I don't know who you are. I don't know what you want. If you are looking for ransom, I can tell you I don't have money. But what I do have are a very particular set of skills; skills I have acquired over a very long time. Skills that make me a nightmare for people like you. If you let me go, that'll be the end of it. I will not look for you, I will not pursue you. But if you don't, I will look for you, I will find you, and I will kill you."  

I want to win. I always want to win. Winning - in the original non-Charlie Sheen sense of the word - is my drive.

It's not easy to fight day in and day out, but I hope to try to.

AND THEN ONE DAY WE CAN ALL LAUGH ABOUT IT. Yeah.

I am deeply sceptical of 'wellness' at the moment, I don't trust it. But a big thank you to those who seem more optimistic and are part of the recovery process. You rock. You really do! 

No more robot talk from me, except MAYBE face to face if you seem particularly patient and have carbs with you.

xxx 

 

This is an emo yet fashiony picture to describe my current general feeling of hopelessness and sorrow. Except I don't have shoes this nice and Hailee is *way* hotter (and still 15 so don't event THINK it).

I haven't got around to blogging about the fact my surgery was cancelled this week because there isn't much to say. I do feel rage/sadness/hate/misery/other horrid emotions/pity, but my overwhelming state is 'nothingness'. 

 

----Fin----

 

 

I started this blog in 2010 because I thought I'd like somewhere to write about all my maxfax "woes". But unless you're one of those types that likes to live out car crash relationships through Facebook status updates, the whole 'LET ME SHARE HOW SHIT MY LIFE IS' urge doesn't really strike as a natural feeling.

When I've been in pain and depressed, my natural instinct hasn't been to blog about it. Few people have borne witness to the true horror of the last few years (I'm not exaggerating, it's been an absolute ballache), but I've wanted those private things to be private. I had a startup to launch and family and friends to stick around for, so I had to 'get on with it' as best I could...even though there have been terrifyingly dark days where my patience had seemingly run out.

When I last wrote (July 2011), I had just started seeing the pain management team at RSCH. The pain clinic is a fabulous service run by their top anaesthetists. I'm not sure if all hospitals have such clinics yet, but they're getting that way after the CMO's Annual Report highlighted the need for major investment across the NHS in chronic pain 'support' as...to quote the report... "chronic pain reduces quality of life more than almost any other condition". (It really bloody does).

I was really hopeful that my nerve block injections (which I wrote about here) would provide significant relief, but unfortunately things got progressively worse. One in particular on the left side of my skull had a spectacularly bitch-fitty reaction. Any initial relief subsided within weeks and as the sensation came back, things deteriorated to worse than they'd ever been really. And whilst I don't think the injections specifically made things worse, they certainly didn't stop things from getting worse. By August I had some pretty bad episodes which affected everything from talking to walking. Yeah. That was terrifying. Squeezing in press appointments and business meetings around MRI scans and emergency hospital visits wasn't exactly easy. Somehow the social network version of WIWT got launched in time for London Fashion Week, but my residing memory of the summer was of hospitals. (And of lying in the back of my Dad's car like a pathetic overgrown baby - literally relying on your parents for everything isn't nice, but my parents and sister are luckily the awesomest. Especially Heather actually, she's an AMAZING carer).

I had an emergency appointment with my pain consultant and effectively said I couldn't (and wouldn't) be seeing my 25th birthday if something didn't change soon. I had no interest whatsoever in that being 'the rest of my life', I wasn't being defeatist...just realistic. I was put on neuropathic painkillers to take at night alongside my usual day to day dihydrocodeine cocktail. I took them for the first time on a Friday. I didn't get up again til the following Monday night. It *may* have been the best weekend of my life. I quickly realised I couldn't get out of bed (let alone run a blaaaddy business) if I stayed on that dosage though (as blissfully blissed out as I was) so I tinkered about til I found a dose that allowed me to sleep AND get up the next day. I was very confused for the first month or so on them. I am now terrified of being elderly having experienced genuine 'confusion'. I used to get off the train in random places and wave at strangers and cry in public places because I suddenly wouldn't know where I was or why I was there. It was funny when it wasn't scary. My conversation skills were RAD.

 

 

I haven't written for ages (a trend!) partly through a lack of energy to bother (writing about feeling shit is not the first thing you instinctively want to do when you feel like shit) and partly because things have been wonderfully mentally busy. Yeah, you better believe I'm launching a new site months ahead of my surgery. Hey, people who use being 'ill' as an excuse to sit at home watching telly all day whilst claiming benefits - y u no learn from me? (I'm writing this a bit high, soz for self-congratultoryness).

My surgery has been brought forward to December, have I already blogged that? Maybe. I've had some pretty horrid ortho work done recently, but my dental arches are moving nicely in pre-surgery preparation. My teeth get gold stars. Cool.

I love my current cocktail of drugs but my levels of pain/uselessness are still annoying. I ate some Haribo the other weekend and ended up in bed for three days. Kinda annoying...espesh as cola bottles are, like, THE BEST. 

So I had my first ever appointment with the 'pain clinic' a month or so ago and a very lovely anaesthetist referred me for nerve block therapy and trigger point injections - which I started today. I'm excited to see if it gives me a bit of a break.

It's weird having injections in your head/spine. If you don't like needles, you probably don't want to think about it. I had four sets done altogether, a la this picture I nicked...

It felt very odd. I wasn't sedated either - I AM SO BLOODY BRAVE - which meant that I felt all of it. They really dig the needles in and wiggle them about a lot, it's a nasty kind of very sharp pain (especially if you think of *where* these big ass needles are being inserted) but the pumping of the steroids and local anesthetic is just the most bizarre feeling. You just feel like your skull and spine are being flooded with this odd painful burny fluid. But ever so often it kinda feels quite lovely - but that might be my sadistic/sick of it all tendencies. I had a nurse by my side just to stroke me. She was nice. And pretty. I liked her. 

I had to lie on my front with my face in a pillow for this procedure and at one point I had a huge surge of panic go through me and thought I was going to die. I calmed myself down though. (Evidently, as I'm not dead). I pretended I was on America's Next Top Model and that Tyra was watching how I handled the pain of going through the 'dramatic makeover' episode. I'm sure you ALL know the makeover episode that features each cycle... where they bleach the girls' hair and cut it all off and the weak girls bitch and cry and the strong girls just put up with it and Tyra becomes their bezza? Yeah. That has become my odd 'mental place' that I go to in my head whenever I have really nasty procedures done. (Far too often at the moment, it has to be said). WHAT WOULD TYRA DO? It is my mantra. Slushy, huh?

Once the injections were finished and the bleeding had subsided, I was asked to flip over and lie down. VERY STRANGE. "Am I lying down?" I asked the nurse, like a complete numpty. It's hard to explain what having a completely numb head feels like - but trust me that it's odd not being able to feel the pillows beneath you. 

So I stayed in hospital a while, stayed very still, counted ceiling tiles, read an amazingly tacky magazine...

And now I am at home with blankets and telly and chips.

The end xxx

p.s

Thank you Dr Fozard and Prof Haers, you rock.

 

Yesterday I received a letter from The Royal Surrey about having hooks attached between all my teeth ahead of my surgery. Whilst I gagged at the thought of being all hook mouthed, (THIS IS PRECISELY WHY I DON'T EAT FISH), I realised I hadn't updated here for a while and that actually quite a lot has happened in the past two months.

There's quite a lot of good news actually. The best news is that my surgery (maxillary Le Fort I osteotomy and mandibular bilateral sagittal split osteotomy) will be done on the NHS. Because of various NHS cuts and my age (I'm old, apparently) it was looking unlikely that I would qualify, but then things got bad. And then they got worse. And then I made the grade :D

But better than that is that my private surgeon (the super duper superhero, world class, oh-my-god can I marry you please? surgeon) will be performing the operation. There are no words for how lucky I am to be getting this guy to do my op, and I am truly grateful that he pities me as much as he does. It makes me cry every time I see him. I am an arse. But yes, whilst I am gutted it took this long to meet NICE guidelines to have my surgery done with NHS funding, I am obviously pleased that this has worked out in the end.

And not only that, but I am actually booked in for the surgery too. It will be in January 2012. I often tell people this and they think that's an insanely long way away but it has to be as my braces need time to "level and align the dental arches relative to their skeletal bases ahead of surgical alignment". Check me with my medical lingo. It's actually quite nice to have it in January though too, I can fatten up over Christmas then get wired shut and lose a bunch of weight ahead of Fashion Week in February. I'm hoping to be recovered enough to be out the house by February, because I ain't missing LFW shiz for nobody. I don't care if I'm still doing sign language and eating by syringe. I WILL BE THERE.

Pain wise? I am still in a considerable amount of pain (woooheee) but I am getting better at living with it now that I know the surgery isn't too far away. My drugs are *amazing* and whilst it has taken bloody years to get the right mix of pain relief and relief from the side effects of said pain relief, I do believe I've got the winning cocktail now. It's far from perfect, but I'm not planning my early demise any more. I never forget to take my tablets, because I know what happens when I do, so that's rarely proving to be a problem. I'm supposed to be Ms Sober for the next year or so but gin does still play a part in my life. I'm just a weird slutty/sleepy drunk now, which is not always a bad thing.

My ears are still annoying and I'm pretty dizzy (seriously, if you want to see me stack it then ask me to navigate a spiral staircase) but that should all settle down once the jaw is happier.  

I've been referred to the pain management clinic at the hospital now so I'm excited to see how they can help further with physio therapy, CBT, botox (really) and so on.

I'm pretty damn happy to be honest though! Largely that's because my family and friends have been tremendous and because I've completely redressed the way I approach my work/play/rest balance. I don't work on any projects that don't meet the "Is this fucking awesome?" criteria and this has transformed everything beyond words. No idea why I didn't do that sooner. Stupid how you often wait til you're sick to get your priorities straight. There's far more play now. So much more play. And whilst it can be very tiring on my pathetic face it's so worth it. SO WORTH IT. 

Yeah, my braces are fugly, but it's all a much bigger picture. Yes, I'm fully aware that the surgery may not actually solve this shit, but they can't do anything else until they've addressed the main underlying mechanical problem. I am excited. Very, very excited. 

I HAVE A PROPER TREATMENT PLAN FROM THE BEST PEOPLE IN THE WORLD AND SOON I WILL BE A ROBOT! Sort of.

Yey :D xxxxxxxxxxxx

 

 

2011 has had a busy start on the medical front, but it has been positive. (I have been brainwashed to have this 'sunny outlook', I know it doesn't suit me.)

Last week I met with my surgeon, orthodontist and neuromuscular dentist. More measurements were taken, x-rays were admired (I take a pretty picture) and lots of photos of my face, shoulders and hips (!!!) were taken. After much discussion, we agreed on my treatment plan for the coming 18 months. I was surprised by how unusual my condition is, with one of the most respected surgeons in the world telling me he'd only seen 20 cases like it in 30 years of surgery. My treatment plan isn't really set in stone (bone?) as my jaw has proven to be a fairly unpredictable little bastard and thus things may deviate slightly. There's a lot of 'playing by ear' to be done but, essentially, I will have traintrack braces for six months to help prepare me for surgery, I will then definitely have my upper jaw broken and moved about (Le Fort I osteotomy) and my lower jaw may have to be broken and manipulated too. After the surgery and the inevitably horrible recovery time, I will stay in braces to 'finish me off' and then the braces will come off and I'll have restorative work done. It's not a quick process (I've already been undergoing treatment for a couple of years and I have at least a couple more ahead) and they're not entirely sure it will even work to reduce my pain, but it will improve my functionality (I'm describing myself as if I'm a robot) and I'll be able to eat/sleep and talk like a proper human person again. Which will be nice. And if the pain is not significantly improved and I haven't thrown myself down the stairs, they can get to looking at my neck more closely. But the first port of call = JAW.

My braces go on next week, so yesterday I saw my neuromuscular dentist to have some electromyography (EMG) analysis work done. I basically got wired up to a computer which analysed my muscle activity in my temporal, masseter, trapeze and *other I can't remember* muscles. I looked like this man for a couple of hours....    

The results were pretty fascinating and I'm *very* lucky to have had such clever clogs testing done here in the UK, apparently I'm only one of half a dozen patients who have had it on our fair island. So that's kinda cool. Some of my results were a bit weird (heaven forbid they'd be normal) and so will be looked at by an even cleverer doctor person all the way in Seattle, but in general the results were as to be expected with my level of discomfort. My temporal muscles are pretty much flat lining because they're chronically fatigued from years of supporting my horrid jaw, whilst the muscles in my neck are working eight times as hard as they should be even in their most relaxed state. They're basically all over the place...and my left and right sides are behaving very differently, which makes sense as my left and right jaw joint are not equally unhappy. (I can still make my furthest back teeth meet on my left side, I cannot make contact at all on the right.) I had practically non-existent muscle recruitment, and I have no bite force at all. It all made a lot of sense and was a nice little bit of proof as to why my diet generally consists of painkillers and baby food. These results will help shape my treatment, and hopefully by the next time I have EMG analysis I'll be getting ever so closer to healthy averages. I'll have further EMG work done just before my surgery, after my surgery, then after the final braces are removed. 

Whilst those results now go to my surgeon and orthodontist, I have also been having more ceph x-rays and chasing up all previous x-rays from the Homerton hospital to see how much my jaw structure has changed. Again, a lot of this is just to allow us to have good 'before and after' evidence, but my surgeon also needs to check that my jaw isn't too weak to even have the surgery...because this isn't the kinda shit you can do twice.

So today I had separators put between my back teeth to prepare me for having my braces fixed on next week. I am pretty much always in agony, but the pain in my mouth right now is at a new level of gag-dom. Pretty unhappy over here but POWERING THROUGH. Just. Yes.

The bands are blue and match my nails. 

And as I suppose the bands are already working, I guess I should really document my official 'before' photos. This is my jaw fully closed, you can see how fugly my open bite is in all its glory...

Next time I post here will be with photos of my braces. If you laugh at my ugly traintrack mouth then I will punch you so hard that you'll need your own jaw surgery, deal? DEAL. Don't mess with brace face xxx

 

I don't know when I am having my surgery, but this is where I'm going to blog about the journey from human to cyborg. I will technically only be like 0000.9% robot once I'm all metal platey, but for some reason picturing myself as a robot is helping make it all seem less scary. Robots are effing cool, after all.

I'll try and keep this blog 'upbeat' but might not end up blogging that much at all. How much mileage can I possibly get from "today I drank a strawberry Complan through a syringe and didn't say anything to anyone"? We'll see I suppose.

In the meantime, you can read how I got to this stage here.

You can see my favourite outfit for a robot lady here.

xxx