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 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

Tuesday, 16 August 2016

After operation and recovery


Hi all

Well I had my nerve operation on Saturday 13th had to be at the hospital for 7:30am so was up for 6am. There shouldn't be two 6oclocks in the day!
So got there and had to wait until 2pm to finally have my operation! They knocked me out with Ketamine this time (I'm sure that's a horse trank) I was so nervous, i didn't want to wake up with trapped nerves or throbbing pain or anything.
So my surgeon, Mr Dewar told me he was going to tuck the cut nerves back up my thigh. I pointed out that I was worried he would put them too far up and they would be trapped when I put my false leg on at the top underneath. He assured me it would be fine and he also shortened my sciatic nerve.
So I woke up a bit stoned, they were concerned that I had low blood pressure, but wasn't life threatening so after having some toast and a pee I was allowed home. I nearly threw up in the taxi but managed to get to bed.
I was really exhausted but my head was buzzing like a million thoughts going through my head or twenty tvs on at once. I just couldn't relax so I ended up watching telly till 4am and finally got a couple of hours sleep and got up at 7am.

The pain killers wore off half way through Sunday, but I didn't have any throbbing nerve pain or my leg twitching, which I thought would happen. Instead my leg was/is just very sore where they have cut me open and stitched me, especially around the top of my thigh underneath. I suppose because I'm sat on that applying pressure.
My mum did stay the night Saturday, and once happy I was ok and everything I needed was in reach she went home. I then took this opportunity to unwrap my bandages, as she would have gone nuts.
I have done this on previous operations only because, you can feel yourself its tight and feels wet and theres obviously a blood pool there that needs sorting out.
Or like me you move around a lot in bed and having a cone shaped leg the bandage slowly works its way off your leg, so it looks like you have a dwarf hat flopping off the end of your stump.
So its not covering the stitches at all and not doing its job so needs sorting now rather than waiting the 5 days till my appointment with the dressings clinic.
So I got my bandages, wipes, tape and plasters ready in the bathroom and as soon as I pulled down my pjs the noddy hat came off with it.
What they had done, and I don't know why they do this every time. They put tape over the stitches, then swabs, then 10 layers of cotton wool bandage and finally a normal bandage. They then tape the top of the bandage to my leg. Of course the cotton wool bandage was full of blood and became too heavy and just slid off my cone shape leg taking everything else with it.
So I used a sterile wipe, cleaned my skin. (I didn't remove the tape holding my stitches together, just wiped over the top gently. Then stuck giant plasters over the stitch areas and gauze, and taped this all down then added a clean normal bandage. Which I also taped down and around the edge of my thigh.
This felt so much better, and clean and I only have the cut healing pain now. Which I'm taking just paracetamol and ibuprofen for. I'm trying to avoid codeine as it just bungs me up.
I hate being back in the pram again and already my mood is low and I don't want to see anyone or go outside. I'm hoping it heals quickly and when I do get to put my leg back on I wont have any nerve pain, or put on weight!

Thursday, 11 August 2016

I have my new socket....and operation date!


Hi all

Well I've lost a stone and a half on my healthy eating exercise routine (now 7.7 without leg and 8 stone with) and because of this my stumpy lost weight, and I had to folk out for a new socket. (very expensive). I will try desperately not to loose or gain any weight now but I kept my old socket just in case.

I also have a date for my operation, finally Saturday 13th August (glad its not a Friday) for my nerve operation. So basically I have my new leg all working, and I only get to enjoy this moment for one day!

I have also bought a new wheelchair (Helium Pro Black edition) I've customised the seat and back. think I might start a business called Pimp my wheelchair! :)
Its so shiny and I dread it getting scratched in taxis. will let you know how it survives the journey to Leeds on Saturday.  what do you think, just missing a large sound system strapped to the back and blue light underneath. :)  If you do like the idea of me pimping your wheelchair get in contact.

I am scared about my operation on Saturday, simply because all my other operations have been to take something out. Or in one case cut my bone shorter. these were obvious what needs doing and once done was just a matter of healing. This operation is on my nerve endings cutting me open up the back and tucking then further up my leg. will I wake up in pain? will I have a constant trapped nerve feeling? will my leg spasm?

In a park by me called Beaumont Park there is a large circular bolder as a child I was told it was the wishing stone and you had to touch it and make a wish. Yesterday whilst scooting my dog I hugged that stone not caring about the weird looks from fellow walkers and wished for no more pain. So lets see how I am Sunday. x


Wednesday, 6 July 2016

Traveling with the leg


Hi all

I've just got back from Disneyland Florida and I'm soooo jet lagged.
But I thought it would be a good idea to tell you about how I got around, and going through customs and the 10hr flight etc.
Make sure when you pack any medication that it is in its original box, preferably with the doctors label on. Put these in a clear bag in your hand luggage and show them to customs, and everything will be fine.
Also don't forget your leg charger, if you need one! also the correct adaptor. I brought the wrong one but the hotel staff were really helpful and got me a replacement. Don't get cheap ones from the pound shop, get a good certified safe one, even if you have to pay a bit more for it. My mum had an experience were she bought some cheap ones and they exploded on holiday frying her e-cig.
I was worried, as you might be about going through customs with my leg. Having nightmares of having to take my leg off in a queue and have it sent down the belt whilst I'm sat there in my knickers. But everything was ok.
I'm still waiting for my nerve operation so, unfortunately I had to go in my wheelchair.
You need to call the airline in advance about 2 weeks, and let them know you will be taking your chair. Also its a good thing to have wheelchair insurance, just in case it gets lost or stolen.
Once at the airport there is a special line for wheelchair users. Its pretty good because you get to zoom past the other normal queues and whoever is with you gets to come too.
Going there I just had to show my passport, and boarding pass and put my luggage through the normal bits. Then through customs where I was just wanded sat in my chair and a lady lightly frisked me. When our gate was called, again I was at the front of the queue and wheeled into the corridor that leads to the plane. You have a choice here of being helped onto the plane or walking on to your seat. your chair is then wheeled away as luggage in the hold.
This was the first time I had been on a long hall flight and found my good knee and foot began to ache after 7hrs, but walking to the toilet helped.
When we landed you will have to wait until everyone has got off, then your chair will be waiting just outside the door. The staff are very polite and helpful, and off you go to collect your luggage.
It helps if you have a walker to drag your bags, as my hand luggage was all in a back pack.
Returning back through customs in America they were a bit more strict, but again had a separate line for wheelchairs. You show them your passport and boarding pass. Then wheel through to customs, the walkers with you have to take off their shoes and put them in a tray along with any other bags.
Customs will then check your chair, and as I was able to stand I stood in a body scan, that didn't beep with my leg. They then asked me to roll up my trousers and swabbed the top of my leg and the tops of my trainers checking for drugs in a near by machine.
Once that's clear they then let you through to departure. Once again you are wheeled up front and on first, your chair is put in the hold and then you walk to your seat, and once again you are the last off and get back into your seat at the door.

I went to Florida Disneyland and what got me was the extreme heat. 35c (90f) and 80% humidity, all day and night no wind for 7 days we were there!.
It was like being in a constant greenhouse, and you couldn't get out.
We spent most of the time quickly going into shops to cool down.
The first day i stupidly went around the park in my wheelchair pushing myself around with my back pack on. Big mistake, I soon over heated and my dad had to carry my bag as it was sticking to my back. All the paths in the park were flat but it was like doing a workout in a greenhouse. So the next day I hired a mobility scooter.
You need to be there early as they soon run out, and be prepared for the price you have to hand over $70 and get $20 back when you return the scooter. $50! per day is crazy. But it was so much better, even my dad at one point sat on it as his knee and feet hurt from walking so much.
The only part I wouldn't go in a wheelchair to is The magic kingdom. They have tram lines for their parades, and when I went to see a firework show on an evening my wheels kept getting stuck in the gaps, and with the crowds I found it hard to move around. At least when you are in a scooter people get out of your way.

The hotel we stayed at was The animal kingdom lodge jumbo house. All rooms are wheelchair accessible and the bath is really low so you can first sit on the toilet next to it then sit in the bath.
Their are specially wheelchair accessible rooms for wet rooms. But I didn't book on of these, as I prefer a bath to a shower.

Also another good point about being in a chair or scooter is that a lot of the rides/shows will let you sneak to the front or have special seating for shows right at the front.
Its a very disabled (I don't like using this word) friendly place. Plus those with you get to sit with you too!

So now I'm back in the rainy summer of England. Waiting for my next operation, and thinking where can I go next. :)