My recent adjustment really seemed to help - I mean, it still hurt like hell, but I was on less oramorph and maybe even only four fent lollipops - but it was distinctly better. However it is getting progressively worse again, which is odd and not easy to understand. As I have understood it before, my surgeon intimated that once you find a combination of tweeks that work, they work forever - this does not seem to be my experience of it, I have several times had a good adjustment and then it gets worse again! Its all a bit like baseball bats.
Otherwise life is quietly trotting on - not being that well right now means that the horses just stand in the field - I do a bit of clicker training with them and do get them in when they need it to have potions applied. Jenni comes every few weeks and we do great things and I feel inspired for about 24 hours and then it goes into the too hard to do today box again which really makes me sad. My cross stitching is going mad - I have so many things ready to start its quite an excitement.
I wonder sometimes if I am stacking them up so I have something to carry on for. Very morbid thought, but the future is less spikey if its in terms of cross stitch projects!!!
One of these days I'll do a blog on my cross stitches :)
Niki xxxx
Thursday 3 March 2011
Saturday 19 February 2011
So bad!
Ok, so I am still alive, honest!!
I've been so bad not updating this - volunteering for the TNA took up so much of my spare energy. I've finished volunteering for them now so I can finally update this!
I do have my motor cortex stimulator now - at times its been really positive and at others very depressing. I've had a really bad patch over Nov to Feb, but my last adjustment has made a positive effect so that is good.
I'll write about the op and the adjustments soon.
Niki x
I've been so bad not updating this - volunteering for the TNA took up so much of my spare energy. I've finished volunteering for them now so I can finally update this!
I do have my motor cortex stimulator now - at times its been really positive and at others very depressing. I've had a really bad patch over Nov to Feb, but my last adjustment has made a positive effect so that is good.
I'll write about the op and the adjustments soon.
Niki x
Sunday 8 November 2009
Tuesday 3 November 2009
MRI Scan tomorrow!
Well finally have had a bit more confirmation - I have an MRI scan tomorrow at 5pm, and then I have to ring the ward on Monday morning to find out the time to come in. Hopefully there will not be any argument about beds.
I hate MRI scans. I'd almost rather have the operation twice!! I think I just focus all my nerves to that one thing that is unpleasant in the first place. I know it has to be done, and all that, but its a simple thing to hate without getting totally overwhelmed by it all. I won't allow myself to feel nerves or fear about the other stuff. It all goes in the very big dark cupboard in my mind - not a place to investigate!!
But I have found one, solitary, small pill of valium in the bottom of my drug draw, so that will help! Rescue remedy will not cut the mustard.
I am a bit concerned that its a normal brain MRI though - not a functional one - I guess they know what they are doing but I wonder how they can find the motor cortex parts for my face without anything lighting up or moving? Hey ho.
I have a dog client coming on Friday morning which will be lovely, he's called Barney and he's a special dog.
Niki x
I hate MRI scans. I'd almost rather have the operation twice!! I think I just focus all my nerves to that one thing that is unpleasant in the first place. I know it has to be done, and all that, but its a simple thing to hate without getting totally overwhelmed by it all. I won't allow myself to feel nerves or fear about the other stuff. It all goes in the very big dark cupboard in my mind - not a place to investigate!!
But I have found one, solitary, small pill of valium in the bottom of my drug draw, so that will help! Rescue remedy will not cut the mustard.
I am a bit concerned that its a normal brain MRI though - not a functional one - I guess they know what they are doing but I wonder how they can find the motor cortex parts for my face without anything lighting up or moving? Hey ho.
I have a dog client coming on Friday morning which will be lovely, he's called Barney and he's a special dog.
Niki x
Sunday 1 November 2009
a week and a bit to go....
allegedly anyway!
Things are ok, head been bad some days, and good others. Have done quite a lot in the last few weeks, regardless.
Cirrus has had his full clip and looks smart but holey where he has sores from a bad attack of Sweet itch. Poor man. He's also worrying me with several patches of white line sepparation on his feet which could be a source for an abcsess. He's not been quite sound in front for a week. Beautiful timing of course.
Been going to church which has been interesting. Not sure on the religious stuff, but really enjoy the sense of community, and everyone is so welcoming and sweet. I don't like the Holy Communion thing though, apart from the fact I can't drink the wine, the whole idea is slightly distasteful to me. The idea of sharing a meal with people is nice however, so am ambiguious.
Am nervous. Am nervous that it won't go ahead. Am nervous about the fMRI. Am nervous about the operation. Am nervous about how much things could change in the next 2 weeks. Despite all, I'd rather not die! I wish I could really get on board with the hope, but I'm way to scared to get on that train again - I've been thrown off it so many times by now.
Niki x
Things are ok, head been bad some days, and good others. Have done quite a lot in the last few weeks, regardless.
Cirrus has had his full clip and looks smart but holey where he has sores from a bad attack of Sweet itch. Poor man. He's also worrying me with several patches of white line sepparation on his feet which could be a source for an abcsess. He's not been quite sound in front for a week. Beautiful timing of course.
Been going to church which has been interesting. Not sure on the religious stuff, but really enjoy the sense of community, and everyone is so welcoming and sweet. I don't like the Holy Communion thing though, apart from the fact I can't drink the wine, the whole idea is slightly distasteful to me. The idea of sharing a meal with people is nice however, so am ambiguious.
Am nervous. Am nervous that it won't go ahead. Am nervous about the fMRI. Am nervous about the operation. Am nervous about how much things could change in the next 2 weeks. Despite all, I'd rather not die! I wish I could really get on board with the hope, but I'm way to scared to get on that train again - I've been thrown off it so many times by now.
Niki x
Labels:
church,
motor cortex stimulation,
Trigeminal Neuralgia,
WLS
Saturday 3 October 2009
A date!!
FINALLY got a date for the MCS operation - 10th November.
Its later than we thought, but the surgeon wants the right team, and to be around afterwards as it is such a rare operation. But it's brilliant having a date to focus on and to stop feeling like a crazy person never knowing if today is the day!
Today I treated a horse in the next village - he has muscular stiffness so Bowen is brilliant for him - although he is a cob and black, he reminded me a lot of Fizz, so that was happysad. I've lent the owner my libra trek saddle, as I think his own saddle is causing problems with his back. Its great treating this horse as I get my aromatherapy massages in return!!
Head has been rotten today - but the wind always jazzes it up.
Ben came back from the US with lots of chocolate - so I've discovered peanutbutter cups - OMG they are lovely, though even I can only eat 2 at a time!
So I feel as if I have a spare month now - a clear birthday, and can get Cirrus clipped a bit later - and even ride him a bit!!
Niki x
Its later than we thought, but the surgeon wants the right team, and to be around afterwards as it is such a rare operation. But it's brilliant having a date to focus on and to stop feeling like a crazy person never knowing if today is the day!
Today I treated a horse in the next village - he has muscular stiffness so Bowen is brilliant for him - although he is a cob and black, he reminded me a lot of Fizz, so that was happysad. I've lent the owner my libra trek saddle, as I think his own saddle is causing problems with his back. Its great treating this horse as I get my aromatherapy massages in return!!
Head has been rotten today - but the wind always jazzes it up.
Ben came back from the US with lots of chocolate - so I've discovered peanutbutter cups - OMG they are lovely, though even I can only eat 2 at a time!
So I feel as if I have a spare month now - a clear birthday, and can get Cirrus clipped a bit later - and even ride him a bit!!
Niki x
Tuesday 29 September 2009
circling the drain....
STILL no date......
Went to the GP today, saw a crappy locum. Since I started the cyclizine and ondancetron (anti-emetics) I've had ulcers in my nose, and then about a month ago I started getting painful spots in my nose that took ages to heal. When the two last ones healed, and I started getting another one straight away I was persuaded to go to the GP to get cream and a swab to check for a staph infection - don't really want that when you are about to get brain surgery!
Locum was a pain, saying they'd do that in the hospital if they were worried, but I can't risk them sending me home! So he capitulated, after he talked me down from the ceiling. Suprised myself at how hysterical I came very quickly!
Cirrus has rubbed his legs, face and shoulder raw, not happy at all poor boy. I've clipped the places out and potioned them. I hope they recover really quickly.
Went to church on Sunday again - I asked a neighbour for a lift. It was lovely service, a harvest one. It's about the only place I feel peaceful and less in pain, in church, which is one massive shock for me! I was given the definate message several months ago that I had to start going to church, which is strange for a non-believer, but I don't tend to argue for too long with such a dictate from my guides!
Am going out on Sunday evening with some friends - a rare and fun thing to do!
Niki x
Went to the GP today, saw a crappy locum. Since I started the cyclizine and ondancetron (anti-emetics) I've had ulcers in my nose, and then about a month ago I started getting painful spots in my nose that took ages to heal. When the two last ones healed, and I started getting another one straight away I was persuaded to go to the GP to get cream and a swab to check for a staph infection - don't really want that when you are about to get brain surgery!
Locum was a pain, saying they'd do that in the hospital if they were worried, but I can't risk them sending me home! So he capitulated, after he talked me down from the ceiling. Suprised myself at how hysterical I came very quickly!
Cirrus has rubbed his legs, face and shoulder raw, not happy at all poor boy. I've clipped the places out and potioned them. I hope they recover really quickly.
Went to church on Sunday again - I asked a neighbour for a lift. It was lovely service, a harvest one. It's about the only place I feel peaceful and less in pain, in church, which is one massive shock for me! I was given the definate message several months ago that I had to start going to church, which is strange for a non-believer, but I don't tend to argue for too long with such a dictate from my guides!
Am going out on Sunday evening with some friends - a rare and fun thing to do!
Niki x
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