ALL THE FLOODS, a Petition for Botox for Migraine, and a Couple of Silly Photos

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I don’t know what is wrong with me, really I don’t.

Our local councillor sent out an email saying there MIGHT be some flooding…. It so happens that I was advised when I took this place that insurance companies wouldn’t touch it with a barge pole (haha! BOOM! BOOM!) so if I wanted contents insurance I’d have to get the council’s own offering. I wasn’t bothered.  Nevertheless, I subscribed to the environment agency’s twitter feed and watched the river swell, and the birds hang on to the quickening flow with quiet determination. What kind of nutcase gets jealous when she thusly reads that in Oxfordshire they are giving away sandbags because of the flooding there?

twisteddoodles.com

I find my reaction quite odd. I mean, it’s not like the garden is flooded and the next step will be the ruination of my flooring and imminent danger to electricals. The river is still 4 foot down the canal bank that’s on this side, and water would have to fill the towpath and climb up the garden before any of that would happen, so it’s not that I feel underprepared. I just don’t think this place will ever really flood, is all. BUT I WANT MY DAMN SANDBAGS!

Sometimes I have to admit that there is something idiotic about desire.

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Now onto the serious stuff. Pretty please sign the petition for chronic migraine sufferers to get botox quickety quick

” It is approved by NICE for the treatment of them. However, very few people are trained to do it on the NHS and you first have to get a referral from your PCT which can take 18 weeks, you add that to NHS delays and you’re looking at a very long time before you get treatment.

The treatment should not have to be commissioned in this way. The National Migraine Centre in London is happy to provide the treatment to patients fitting the strict critera but you still have to wait around 18 weeks if not longer to get the PCT to commission this charity to do it. This is ridiculous for those who have tried everything else and need the treatment for this debilitating disorder. It should not be so difficult to get this illness treated when a specialist says that you need it.”

am on the list, and I do meet the criteria, but as it stands there is no way I will get my next go-round by the time this one wears off. We are sickeningly close to getting our needs met, and yet it’s always a hair’s breadth away…

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I do try to only repost credited pictures. Sometimes looking for someone to credit has unintended consequences. Like, I wanted to share this picture with you to prove I am not entirely curmudgeonly about the festive season

so I clicked through a couple of tumblrs til i found where it might possibly live, still no credit but LOOK! I found this photo

which made me LAUGH LIKE A DRAIN.

So, whatever, copyright blah blah, but LOOK! A pelican nipping a cat’s head!

Pantone Emerald, Reyjkavik’s Mayor, a Dose of Botox, and M’new Venture…

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News just in from my tumblr feed…

The pantone colour of the year 2013 is going to be this;

what can i say? i hate it.

There have been some nice colours over the past few years. Turquoise was fabulous, I always like an orange, but greens, well, for me, greens are problematic. I like ‘natural’ greens of all hues, but there are some greens that just make me feel ill.

NEWS JUST IN! Ten thinks this is a good colour for 2013! He won’t tell me WHY though, because he says I’ll just blog it. (well, YES!)

Sometimes colours of the year get ignored, and sometimes they become very popular. There was a whole turqoise interiors blog that year, but I’ve not seen any evidence of this year’s dark orange being be-themed. If you are in my camp and find greens tricky, but you end up with STUFF that colour, then may I advise a bright light orange accessory or two to even things up?

You’re very welcome. I know. I am WISE.

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Something you may not have heard of is that not only have Iceland solved their banking problem by telling the banks to fuck off, but also Reykjavik now has a COMEDIAN for mayor!

So sensible. I suggested we move there, but Ten says it’s too cold. This is their campaign song, for their party “Best”.

In which they make many promises, like ‘free towels in swimming pools’ which they plan not to keep. Just like a real party.

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So, yesterday I went to get a FREE go round of botox. I’d been a bit super ill in the run up because I’ve been ramping up one of my medications, and every time I do that it makes me have a period which gives me hormonal migraines which are the worst, and that’s been the past week or 10 days or so.

giles again. putting a pin in it.

I was offered the free gig originally in return for speaking to some doctors, but in the event I didn’t have to, and I just had to ‘be the patient’ for Giles while he demonstrated where the injections go. It was somewhat more painful because he did it a lot more slowly because of the telling, but still, it was basically me being handed £600 effectively, so I can’t complain. I didn’t feel as well and as elated as I did last time round, because I am still reeling from upping the meds, but I do look forward to a less-worse winter on the back of it. I noticed he didn’t have the picture of his hens as a background on his desktop. A small concession to the visiting docs? I don’t know. He wasn’t any less Giles-y.

So, yeah, hence I haven’t been blogging lately. I have, however, been doing a little donkey work for my new VENTURE with my friend Al. We are putting together some courses for professional development – MBSR (Mindfulness Based Stress Reduction) and mindfulness skills for the workplace, particularly teaching and learning, since that’s our background, but if we can get any gigs in hospitals or the like training for compassion fatigue then that’d be awesomesauce. The site isn’t public yet, since it’s still very much under construction, but I am already posting quite a bit on our facebook page Training With Awareness. Come on over and LIKE it, so I get to see what happens when a page gets 30 likes. Something magical, I expect.

A Day Out with My Brain

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To the trains!

Today was a most intrepid day. I had Bowen lady followed by a neurology appointment.

to the trains!

Ten came with me, because, you know, traveling. The first half of the day was easy enough, but by the time we’d done it all I needed serious supervision to get home.

I’d wondered what he was going to do for the hour I was having the Bowen treatment, but I needn’t have worried, he’d already hooked himself up for a hang out. Turns out he has a friend who runs an arty bookshop just round the corner. We were a bit early so I got to meet her. She was very nice and advised me about selling my signed Damien Hirst book, which might be worth a bob or two.

I’d thought we should eat in Bethnal Green, but I felt too nervous, and wanted to be as near the hospital as possible in case of EVENTS and being late and everything. I am hardly ever late for anything. I get too nervous. Then I am stupidly early and have to hang around.

So it was a happy thing that Ten remembered the cafe at the Mary Ward Centre, where I taught once upon a time, so we went there because it couldn’t really be nearer the hospital without sitting in it’s lap.

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This hospital is the National Hospital for Neurology and Neurosurgery so you’d think all the doctors there would be pretty fancy. But no! It turns out my doctor was “only” a neurologist, and I would have to go to the extra super fancy Headache Clinic there to get the botox, but get it I very well may – ON THE NHS  no less. And at £600 every three months to get it privately  it’s rather worth the wait to get it free. Eight months waiting list to see them, she reckoned. But she also told me some useful stuff to do in the meantime which would mean I wouldn’t have to mess around having more appointments than strictly necessary before getting the good stuff (assuming they see fit to give it me).

Whereas our good friend Giles Elrington at the National Migraine Clinic (very worth the name drop as it turns out) will give you botox, if he sees fit, whatever drugs you are taking, this clinic want you to be off as much as possible, and will even have you in to get you off your drugs, so assiduous are they.

remember giles? he does as he sees fit. you can tell, can’t you?

Now, it has never been suggested that I come off the preventative pain killer I take (naproxen) before, but this is what she says they would want me to do. She also said I should go up on my mood stabilizer – this being a project I had put on hold for the winter because every time I go up a dose I have at least a week of ricochet headaches before it settles down, possibly because it has an effect on hormones, so these may be ‘period migraines’ of sorts.

See, the migraine clinic is a private charity – hence the cost, and also hence I could get the botox treatment before it was available on the NHS in London. So what I am thinking is that if i get Dr Elrington to hit me up with the good shit for one more time then I can a) feel a bit better at a time of the year when I traditionally start going on the skids pain wise, and b) get a kick start on the drug withdrawl.

I have done drug withdrawl many times, and I do know not to go cold turkey, but even so, it’s a hard thing to do when not all your pain is rebound pain. Because, dur, you are going to have ALL THE PAIN and it will be bad and it will continue. So having something to leven that with will be most welcome and certainly worth £600.

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Addendum

Just as an aside, really, I have to tell you I was super nervous about seeing the neuro. Doctors have a lot of power, and I’d never met her before, so I was worried about that, and also because my brain isn’t what it might be, and because I have had this for so very long, I certainly can’t remember all the drugs I have tried. Anyway it was all fine, she was kind. And impressed with my name dropping (thanks, Giles, for being so very name droppable).

As we approached the hospital I started feeling a little hysterical. I started wanting to shout “TAKE MY BRAIN OUT!”

When we got to reception there was a man working there with a huge bulging forehead.

einstein’s brain. thank goodness someone had the foresight to steal it! (click through for more einstein’s brain goodness)

I found myself having a kind of tourettish urge to shout about his massive frontal lobe. My internal head shouting continued after that at various intervals (I never gave in to it – I have SUCH restraint) up to and including when the neuro lady said that under some circumstance or other I would have “less” headaches.

Gentle reader, it took all my strength not to shout “FEWER”.

holiday time! botox for migraine, and waffling on about the olympics – and a poll! many good things!

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we’re going to bri-ghton! we’re going to bri-ghton!

we were going to wales, but i got an appointment at the migraine clinic bang in the middle of our proposed travelly time, and had to cancel. wales is too far to go for less than a week. brighton, on the other hand, isn’t. in m’previous post i linked to a little tumblr i made with the purpose of fishing for holiday swapsies. i didn’t get the swap i constructed the thing for, but it occurred to me to show it around to brighton peeps, and one such friend actually happened to need a dog/house sitter for the latter half of this very week.

so excited. the doggy we are visiting is the one who inspired me to adopt a staffie. she is an old girl now, but i’ve known her since she was a pup, and she’s a lovely girl.

do not fear. THERE WILL BE PHOTOS. oh yes.

i don’t know if we will see everyone this time round, but i do know there will be group dog walks. that’s it. i don’t know anything else.

we will go look at the sea, too. but i don’t know the summer dog on beach rules, so we will have to find out about all that.

and, “hollybags”? don’t ask me. i think it was one of the kirsties who coined it. or at least, passed it on to me. for safekeeping, like.

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the national migraine centre is a private charity, not part of the NHS. it’s been run by a famous Dr, Anne MacGregor, who has dedicated herself to researching the part hormones play in migraine. when i went to see my neuro at whitechapel last year, for what i assumed would be the last time because i was moving out of the borough it turned out that he was moving on, too. Dr MacGregor is off to concentrate on research at barts, and he, Dr Giles Elrington, is taking over at the migraine clinic. I’d stopped going there because being a chronic, paying every visit wasn’t an option. He told me he would waive the fee for me, though.

giles. he’s so posh he really does wear a bow tie.

the suggested donation is currently £100. so, not inconsiderable. what i will be happy to pay for, though, is the botox treatment. this is his hobby horse. it’s been approved by NICE (national institute for clinical excellence – our FDA) but the NHS trusts all have to decide whether to bank roll it, and they are taking their sweet time.

at £600 a time it’s not cheap (which i don’t really understand, since botox is actually not expensive in itself) but if you are a chronic like me then neither is almost daily use of triptans, and in a more general way, an inability to do a day’s work. i think i cost the state a good deal more than £600 a quarter.

IF he can whip out the needle on tuesday i will be very pleased. i have had botox before and it worked really well. apparently you need to give it a couple of goes to see if it’s not just a placebo effect, but it could become cost effective if it meant i could work. what i would work at is a whole other question. of course, i have the fibro to contend with as well. my attempt to swim myself well not only sparked more migraines than i could cope with, but also quite a bit of IBS related flare ups. and then there was the fatigue… so it’s not a cut and dried situation, but bloody hell, i am sick and tired of being sick and tired, so lets give it a whirl.

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i’m slightly weeing myself with excitement over what possible escapades protesters might get up to during the olympics. people are being arrested for the slightest thing at the moment, though, so they’ll have to be smart. i’ve written a whole waffle about it, but it’s not been posted yet.

and, speaking of waffling, you may note that i am writing like a normal person over there. i felt it was the way to go. trouble is, now i am all sixes and sevens about capitalization. what do YOU think?