Tuesday, 20 June 2017

The long road to Osio

20th June 2017

Hello all

Don't look at me like that, yes I had said in previous blogs that I had explored Osio Intergration and rejected the idea. Because of the way the finished thing looked and the 'leakage' issue.
But I had to have yet another neuroma and a cyst removed from the stumpy, and was told this will be a yearly thing.
Also I got another sweat blister on the end of the stumpy and I wasn't even exerting myself.
So enough is enough, I spoke to my plastic surgeon and my private prosthatist at PACE to get the ball rolling.
I've also decided to do a vlog as there isn't much on youtube about anyone going through this from start to finish. Who to contact, the costs, what the operation looks like, physio etc etc.
I know the risks, you can get an infection in the end that can travel up the bone, resulting in you having to have your bone cut back up to the point where the steel pin was inserted.
If I have a bad fall and the femur cracks, again leg cut shorter, and in my case it would be nearly all my leg and I would either have to wear a permanent belt to hold my leg on or that horrible over the shoulder strap device.
Also if I do fall and land on my knees, there is a fail safe. The pin that is at the entrance to the top takes the pressure and breaks instead. This is good, but then I have a broken pin that I have to get on a plane to Germany to fix.
That's the other down side, this is still a relatively new procedure. There are experts in Australia, Holland and Germany. There are consultants in London but they are a branch of the Australians.
So I've decided to go to Germany.
Also this is not on the NHS yet, and I've been given a rough guide price of 30k, yep 30 grand for everything, the operation, the physio, the stay in hospital and flights to Germany.
This is what I've been told will happen:

1) See consultant in Germany, if you need to you will have a date for an operation to cut back and thin out the end off your stump as close to the bone as possible for better pin connection.
(I don't need this part that's why my plastic surgeon said I was ideal.)

2)You have operation number two, they open up the end of your stumpy, take out the marrow in your femur, and screw in a pin then sow up the pin inside and leave you for a couple of months. This is so the bone grows around the pin securing it.

3) Then if no complications i.e rejection/infection the end is opened up and the outer pin is put on that the leg will finally attach too.

4) You are then months in physio having small weights put on the end of the outer pin to get used to the weight of the leg. You are also taught to press down on it too so you take the weight through the bone.

5) Finally the leg is clipped on and I will be re-taught how to walk, as I have been taught to swing from my hip with a socket leg, now I have to try to walk normal again.

6) Invent some sexy upper leg coverings to hide the freddy Kruger penis leg so I can wear shorts.

all In all they say 2 years. which isn't too bad if you think if I do nothing I will be in hospital every year with neuromas, which I won't get as they are like pressure blisters internally. So as the weight is now through my femur like it should be they wont flare up.

I've decided to have this operation after my 40th (late 2019) As I want to do something fun for that and don't want to be in my chair.

Below is an xray and an MRI of my leg I was given to pass on to the German Osio surgeon.
I find it so fascinating, in the xrays you can see my intestines, and the MRI looks like a slice of meat :) 

Saturday, 20 May 2017

3 little piggis


Hi All

Well three weeks after my toes operation and I'm walking around again.
The Deadpool genes have kicked in once more!
It's still sore to walk at speed and I can't flex my foot, so no standing on tip toes etc.
But I can walk very slowly with my stick.

I had the end bone taken out of the middle and 2nd to little toe, and the nail bed removed from the little toe. (see picks below)

I now have 3 little toes instead of one, bonus is less likely to catch on furniture :)

Now next Saturday i'm having my 15th! operation on my stumpy (neuromas removed again)
I should get a free coffee or something.

I actually look forward to being knocked out because I get a few hours of deep sleep.
I even play a game with myself now and try to stay awake, or even see how far I can count down.
I've been knocked out that much that I have a scar on the back of both hands where the cannula goes in.

Hey ho, the really frustrating thing is i'm going to be in my pram over summer.
I can't get in the garden, or go on holiday. Well I can but i'll be in bandages and I know my mood will go down as I don't like being in my pram.
I haven't even got round to trying out my new tilted foot yet with heeled shoes.

I've also got the start up of my new business. That should be interesting seeing how I cope in my pram, packing goods and getting stock out of the garage. Well let's deal with one problem at a time.
Next thing stumpy operation.

Wish me luck.

Sunday, 30 April 2017

5 Years on!!!!


Hi all

Well it's five years! I remember watching a youtube clip of an indian man who had lost his leg and was walking down the street with his friends with out a stick. It had taken him 5 yrs to get to that point and I was determined that would also be my target years.

Since my accident I have been making a list and I will continue to add to it.
It sounds morbid to start off with but hear me out. It's a list of all the good things I have experienced after my accident date. If I had a died that day I wouldn't have been here to do/see/ experience them.
So whenever I am down or when I get to another year. I look at the list and it inspires me to go on living making that list longer

Held the keys to my very own bungalow.
Bought gothic furniture for the house
Learnt how to cross stitch complicated patterns
Road on a mobility scooter for first time.
Watched lots of movies at pictures with sister
Went to London
Saw the natural history museum
Got one quarter way up Ben Nevis
Flew in a plane
visited Edinburgh
Tried an avocado for the first time
hosted a roleplay game at my home
cooked Christmas dinner in new home for family
held a newt in my hands
Was a bridesmaid at my sisters wedding
flew to America
went to Disneyland
got to hug Big hero 6
went to universal studios
sang singing In the rain down fake broadway with my dad whilst others ran for cover.
discovered frapachinos - became slightly addicted.
retired my mum, made her cry in a good way.
went to Whitby goth weekend and bought a hat that actually suits me
joined roleplay again made new friends
went to nationals for first time in 10 yrs and came first place in my category.
Experienced liposuction...ouch..
Stayed in a hotel by myself for the first time.
Lost stone & half weight
Watched lots of tv series too many to mention.
went to Nottingham nationals came 3rd but walked around in the sun on large campus.
Tried full eye black contact lenses for first time.

Plus so many other injury related stuff and other bits that I can't recall right now, due to the amount of pain killers I'm on, but you get the idea.

Why am I on painkillers I hear you ask? Well had my toes operated on to stop the pain I had when I took a step. I've had the two knuckle bones taken out of my two middle toes and the nail removed from my little toe.

Also before this operation I thought I would show you me walking without a stick.
Yes i'm a bit limpy because of the blister I still have on my thigh (see last post.)


So just waiting for my date for my neuroma operation next so will let you know how I get on.
Keep plodding on peeps. x

Wednesday, 26 April 2017

Burning Rubber

26th April 2017

Hi All

Well I've been away for the weekend at my hobby, roleplaying. It was hosted at Nottingham university. The campus is absolutely massive, I booked a hotel on site as it only looked like it was 5 mins walk to every building I needed to go in.
But it wasn't to scale it was a 25 min walk, up hills, up steps and across grass at one point,
all this in glorious sunshine.
You can see where I am going with this (see picture below).
My leg began to sweat badly on the 2nd day of trudging around. I already had plasters around my crotch to stop the top of my liner rubbing. But this didn't stop the rubber inner liner start to slip. Once the blister popped it just oozed water and had no grip at all.
This was on the Saturday night after drinking with friends, and when I was walking back to my hotel (all up hill) at this point I was really thinking about having Ossio integration.
I had to grab the top of my hard plastic outer and hold it on and walk very slowly.
Once inside I was able to take my liner off and wash my leg. But I couldn't put a plaster over it as the sheer material of the plaster would cause the rubber liner to not grip and slip.
I didn't have my chair with me, and anyway I couldn't navigate the outside stairs to other buildings.
So I let air get to it over night, and then just had to put my liner back on over it, and walk very painfully and slowly to my final events. Luckily Sunday night a friend offered me a lift home, so I didn't have to carry my heavy bag through train stations, and limping.

Do you guys have this problem, especially in hot weather?
I have looked into it and I'm going to try a product called Odaban. You spray it on areas that have excessive sweating the night before. Then wash it off the next day and it's suppose to stop you sweating.
I don't know if this was sweating or moisture build up with me basically sealing up the top of my leg with plasters to stop rubbing. So no air could get out, and walking miles in heat creating moisture built up? Well I will give it ago once my blister has healed and let you know how I got on.

Take care

Friday, 3 February 2017

Big steps


Hi all

Well I survived Christmas, and was able to walk around for the first time!
I was able to decorate my tree, and make Christmas dinner, not in my pram!
The downside is after walking around so much I have developed another neuroma.
But I have a review due with my plastic surgeon in a few weeks so can get booked in then.
I was warned this would happen, due to the nature of my injury. At least I can tell now, that pain is this and that pain is that. So I can say to my doctor this needs doing.
I'm also on the waiting list still for my 'ring' toe being re-broken. So it doesn't hurt when I walk for long periods.  Since it was pinned in hospital after the accident, it had fused to the 'knuckle' part of my foot pointing down. Luckily the toe part of that toe was amputated so its only a small stump pointing down. 
This is only a re-brake and set so once done I should only be off my 'feet' for 6 weeks at most.
I've been on the waiting list for this since November but I can't blame the NHS for the long wait as its only a minor operation.

I also got a second smaller socket cast and put on my hydraulic leg. So that I could attach my new tilting foot to it permanently. It only tilts 2" but that accounts for half my wardrobe boots.
I've yet to try it out and think I might wobble over. So will leave that until after my next stumpy operation.

I was also frustrated with paying 'a lot' of money for my electric leg, that is suppose to let me do all these fantastic things. But due to my height I couldn't even do the basic, stairs.

I've mentioned before how you have to flick your leg back like a bull getting ready to charge. Then quickly bring it up in front of you and place it on the step. But if the steps are standard hallway steps I was finding it hard to quickly kick back and lift my leg that high. Then when I tried to step up as directed my leg would bend at the knee, and I couldn't step up.

Well as you know by now I am stubborn, and will always find my way. Prosthatist's for all their knowledge are not wearing your leg. So if they tell you to do something one way and it just doesn't work, try another.

So for those one legged pigmi's heres how you step up. Don't do the charging bull thing, because by the time you have kicked back. The leg realises you want to bend to step up, it hasn't followed through fast enough and your toe catches on the lip of the step you are trying to step on.

So here's what you do, raise your leg to step up (it doesn't have to be on any special setting.) to the point where it bends, then using the lip of the step you want to step onto. Push the toes against it making the leg swing back slightly.(It doesn't actually swing, unless you are on a hydraulic.) then place your foot on the step.
You should now be stood with one foot on the bottom step and your bad leg on the top step.
This next bit is different from what they tell you to do at physio.
Holding the banister, I want you to push down through your bad leg onto your heal, not your toes.
You have to re-programme yourself not to go upstairs on the front of your feet.
Watch a 'normal' person do it and they go onto their tip toes when they step up.
You don't have a calf to do this, so you have to push hard down through your heel.
So whilst doing this, slowly lift your good leg off the step. try not to pull yourself up with the banister.
Then when your good foot is on the next step bring your bad leg up to join it.
Congratulations you've just taken your first step up. Your good knee will thank you if it could.

I will add a video shortly.

Now just practise this on one step, very slowly, their is no rush. I still use the one, step up method in public. But with practise I will get quicker.
Now I have just got to find a better way of going down.

Take care x

Sunday, 20 November 2016

New years resolution achieved!


Hi all

I got my new smaller liner, and now no longer feel like my leg is going to flop off.
Although due to my cone shape I still have the problem of not being able to wear heavy boots.
Like my new rocks, as after a few strides I can feel the rubber grip slipping. Maybe I should look into wearing a support belt for heavy shoes?
Any way I digress. I know its not the end of the year but at the beginning I made two resolutions. I set out to loose weight. Which I did 1.5 stone :)
The other was to be able to walk around my block where I normally scooter my dogs without the aid of a stick.
Now as you know I had had my 13th operation, and nerve pain, and leg problems, and I was so depressed at one point not wanting to be here anymore. But I got another tattoo 'this too shall pass' and gave myself time to heal, and yesterday I found that the inside nerve operation had healed and there wasn't any pain. For the first time ever I didn't have any pain in my leg.
Yes my toes on my good foot hurt, and I'm waiting for an operation for them. But I could put my leg on and take a step with no pain!.
So I walked up and down my drive , then took a bus to town to meet my mum. I had my stick with me for support, but I was taking steps without it.
So when I got home as the weather had improved I thought why not give it a go. Its due to snow in December, and January. So now was my chance, and I did it!
I walked granny steps just swinging my gate slowly, there wasn't any rush. I kept my head down looking at my feet. Not to make sure I was walking ok. But so I didn't know how far I had to walk. Not all the pavement was even, and some at one point sloped out to the road but I just walked slowly and even kicked some leaves :)
The last few yards back to my gate was the hardest, as my thigh was aching due to lack of use and my back was aching and my toes throbbing. But I did it I checked an app I had turned on and I had walked 1.56miles in 40 minutes!
Attached is a video of that moment. Now I'm not going to do a tiny Tim and throw away my stick. I'm still going to use it for that little bit of support until my thigh becomes strong and bloody tilting pavements!. So its been a long road getting here but I've final done it.
I will still post as there is always things I want to talk about, my up coming toes operation and prosthetic leg stuff. But hopefully no more leg operations now :)

take care x


Wednesday, 21 September 2016

Watch those meds!


Hi all

Well it's been 5 weeks since my operation on my nerves. It seems to have worked, I'm still too tender to put my full weight on my leg. (I've even been putting on my leg for short periods, yes I know i'm naughty). My stitches have all healed up (did that within 2 weeks) and it's just the insides that need to heal now. Just call me Deadpool. :)

But what I'm going to talk to you about today is our little helpers, the pills.
Now as you know, since my accident I had been taking Amatriptaline. Which is a drug prescribed mostly for depression in high doses. Its also a neuro-inhibitor, and dulls the pain signals to the brain stopping spasms and nerve pain. It also keeps your Serotonin levels high. (the happy hormone).
Hence why it's taken for depression. Known as my happy pills I was on a high does 4yrs ago, then went down to just 20mg (two tablets) before bed. As they also make you tired, happy and tired what's not to love about that?

Then after my recent operation I started taking my Gabapentin 200mg 3 times a day. This is another neuro-inhibitor, this time it's given to epileptics and also acts on the hormone that stops pain signals to the nerves.   Also if the pins and burning needles feeling was really bad on a night I had the usual. Ibuprofen, Paracetamol, and co-dine to fall back on.
I was also taking a herbal stress relief tablet called Kalms.  So for the first month I was a high as a kite happy bunny, then the side effects kicked in.

All of the above make you constantly tired. Plus Gabapentin (neurotontin) messes with your brain chemistry, so after a while you find it hard to think straight. You forget simple names for things.
Like I asked my mum to pick me up a pack of those, things you know you put cards in them...small folders, sticky..erm ..envelopes, yes that's it.  I'm not joking. I was finding myself tongue tied over simple things. Then 5 days ago I was talking to my dogs (as you do) and I began to stutter.
I though this isn't right.

I was also drinking 2-3 mugs of caffeinated coffee just to stay awake during the day. This might not seem a lot to you. But I'm a decaf girl, simply because I get stomach ulcers, i'm currently suffering from painfull bladder syndrome, and it's one of my IBS triggers. (just call me miss healthy 2016)

So not only was I a bumbling idiot, my stomach was upset, I was getting up during the night to pee 8-10 times and not sleeping till 2am!

Also my mood had dropped. I had decided to start up my own business. I needed a focus, something to occupy my mind from the endless repetition of operation, healing, walking a bit, feeling pain, operations etc, etc. I had decided to open an e-shop that sells gothic themed loose leaf tea and other oddities. Called Monster Mash Teas (shameless business plug)....
Now with any start up your going to come across problems, especially when your dealing with something that people are going to consume. There's environmental health, and laws to abide, and loads of other stuff. But rather than meeting these problems head on, and just going okay I can't do that what's the other option. I would scream, and cry and suddenly not want to be here anymore.
I hadn't had these dark feelings in a long time. But a little voice right at the back of my brain whispered, yes your coming up against problems but its not the end of the world. This was just suppose to be a fun distraction. If its not fun then quit, big deal, why you crying?

And that was it, why was I so upset? I then went back to look at my meds. Yes I wasn't in any pain, but have you ever read the side effects of Amitriptaline and Gabapentin?.....Are you like me and just throw that bit of paper away inside the box, because it gets in the way when you pull out your tablets?
Well go now and have a look. Amatriptaline is the scariest.

(Usually taken for depression and epilepsy and nerve pain)

Skin rashes
Sensitivity to the sun
puffy swelling of the face
low sodium levels
fever or chills
sore throat
ulcers in mouth or throat
unusual tiredness or weakness
unexplained bruises
Depression - thoughts of suicide
breast swelling in men and women
swelling of the testicles (not in women :)
changes in blood sugar levels
weight gain
inappropriate secretion of the hormone ADH which may make you urinate more frequently!
difficulty concentrating
difficulty sleeping
exaggerated behaviour
pins and needles!
dry mouth
blurred vision
feeling faint when getting up
fast/racing heart
very low pressure
feeling sick
abdominal pains
buzzing or ringing in the ears
hair loss

then when you quit expect: feeling sick, malaise, headaches, mood swings, to occur for 2-7 days.

Gabapentin (neurotontin) (taken for epilepsy and nerve pain)

Stomach pain
feeling sick
face swelling
viral infections
lack of coordination
respiratory infections
ear infections
low white blood cell counts
increased appetite
anger towards others
mood changes
difficulty thinking
jerky movements
difficulty with speaking
loss of memory
difficulty sleeping
sensitive skin
decreased sensation
difficulty with coordination
unusual eye movement
blurred vision
high blood pressure
difficulty breathing
dry mouth
facial swelling
flu like symptoms
increase in weight
breast enlargement (never a bad thing :)
low sodium levels

All high-lighted are what I was suffering from. When the dark thoughts started I didn't care what pain I would be in if I came off them I had to stop, so I did. Now I appreciate all medication has side effects. i.e pracetamol, you take for a headache can cause a headache :)
But the two meds above rather than just blocking the pain for a short while like Co-dine and ibuprofen etc. They mess with your brain chemistry and hormone levels.
Just like the injection pill I had stopped taking at the beginning of the year. That was a very high dose of Protestorone. For 10yrs it did the job, stopped my periods totally. No more agony each month and fainting due to low blood pressure. But it made me retain water like a Baobab tree. (google it, then stick eyes and a little black wig on it.) I also was an emotional wreck, and that was before the accident.

Then when I quit, my body had got so used to the high Protestorone that I developed Bladder Cystitus. (or painful bladder syndrome.) Basically my hormones were so messed up it acted like an auto immune disease and started attacking the walls of my bladder. Creating sore masts that were irritated with anything acidic. (hence peeing 10 times a night.) Ho also doctor said best thing for that....you guest it Amatriptaline!!!!
After research I found that your body will return to 'normal' up to 12 months after quitting the injections. So I think once my hormones sort themselves out, it should stop attacking my bladder. In the mean time. Just drink Camomile tea, and milk. No more drugs!!

So to cut a long story short, I quit taking anything. I appreciate if you are on high doses, DO NOT JUST QUIT. This can cause all sort of nasties like fits etc. Just lower your doses, say go from 900mg Gabapentin. to 600, then 300 then 100, over 2 weeks.
I had only been taking a low dose of Amatriptaline, and only 900mg of Gabapentin for 4 weeks.

I'm still here, and you know what, I feel much better. I'm not tired anymore, I'm only in slight pins and needles pain. Which if needed I can take normal pain killers for. But most importantly i'm not depressed anymore, and can look back to last week and think my god, what was I thinking.
Its scary that if I didn't have my dogs, what I would have done.
So this is really going out to you guys that are alone at home. Look at your meds, look at the amount you are taking. Look at the side effects. If you can't go day to day without taking something, then look for alternatives that don't effect your hormones!

So I shall finish todays sermon by telling you about my new tattoo I got at the weekend.
I went and got it done on the spur of the moment. In a parlour, done by a girl who had only 2yrs experience, and whose hands shook as she did it. (note to others do your research BEFORE getting any tattoo done!)
It was only words so not that bad, its a bit wobbly. But I actually like it, it looks like I've got a pen and decided to write a note to myself. (pic attached)

'And God gifted Solomon with many magical treasures, one was a ring that granted the power to make the saddest man happy and the happiest man sad, and written on it were these words.
''THIS TOO SHALL PASS''  (old Hebrew saying)  So things won't always be this bad but when they are good treasure them as they too wont last. :)

Take care x