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

11/08/16

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

 



Traveling with the leg

06/07/16

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. :)

No pain no gain

15/05/16


Hi all


Well i still haven't got a new date for my surgery yet, and we are half way into May. So i called the hospital and told them to book me in in July. When i get back from my TRIP TO DISNEYLAND!!!!! Ahem...excuse me.
I know from previous operations it takes up to two months to fully heal then another month to get back to walking normal. And i dont want to be changing dressings or in pain on Holiday.
So currently the Amatryptaline has kicked in and its reduced the pain to where if i pad out the bottom of my stump it doesn't hurt. I still cant walk far but i can do a bit of gardening and pick poo yay. The only downside of Amatryptaline is its a great nerve suppressant but it also affects your mood. Messing with you seratoning levels. Its a drug also prescribed to people with depression. It messes with my happy hormone so one day im really happy and the next day i could wake up and be so low and only have black thoughts and cry. The sooner i get this operation done i can get back off these things.
Also since new year i have been eating healthy, no booze, no sugar and low carbs and calorie counting. I still have a bun on my birthday and meals out but i take those calories into consideration. As of April i had lost half stone and as its not done through fad dieting just healthy eating it should stay off. I also do a 20min exercise routine without my leg on. Im gonna keep this up until the end of the year to see what my body settles at. Attached is a pick of me with my new electric leg. i have, for the first time in two years a size 10 top and bottoms on. Keep on plodding on folks. X

Good News....for you!

14.04.2016


Hi all


Well I had a meeting today with my Solicitor from the accident, and a group of other important peeps who were all interested in sorting out a website.
This website will be there to help you guys and give you practical advice, such as where you can go, who can I talk to, and that all important question, when will I walk again?

Other ideas could be equipment we want to pass on or sell cheap. Wheelchair or disabled accessible places. (thinking of creating a sticker to be displayed in windows of business, so you can see when passing they are accessible).
Giving you contact details or videos to watch about prosthetic procedures and aftercare, disabled exercises, and meet up activity groups.

I have tried my best to lay it all out here as it happens, as you know I'm still recovering nearly 4 years on. But I like to think that things I have learnt along the way, can be passed on to you. All I want to do is help, you are my therapy.

So I will give you more details when I get them from future meetings. To get all these ideas of what is to go on this site and I will link it here once it is up and running.

But if you have any ideas of what info you might like to see that you have struggled to find anywhere else then let me know. we can be the amputee army :) best foot forward...(groan sorry lol)

Another Operation...On my nerves!

23/03/16


Hi all

Well got results of my blood test and all is fine. I had low white blood cells last time because my body had just finished fighting off an infection. So when I had the 2nd test my white cells were going back to normal, and big surprise I don't have a vitamin deficiency!.
So just waiting for the pee clinic letter now.

So on with the leg news, got my date for the operation 23rd April, four weeks away. But hey what's another month I've already waited 4!
So I got to see my C.T scans, and it looked like an x-ray of a slab of lamb. The surgeon pointed out the neuromas, and they were exactly where I pointed to in my very first review. So now he can see them he knows where to operate.
Also neuromas area bundle of nerve endings that are trying to heal and connect to the other side of the nerve it got severed from. That's never going to happen so they just heal over in a blob, which is painful when pressed. So the surgeon is going to have to open me up high up my thigh pull the nerve away from near the surface where it is and tuck it further up inside the padding of my thigh. So that when the neuroma does come back. (I've been told its just your bodies way of trying to repair itself, so it will). It should be cushioned by my muscle tissue and not hurt as much.
The only other thing is, he warned me I will be in a lot of pain when I come around because he's cutting my nerve endings, two of them. He said that if I have pain then it fades that's good but if I have pain that continues and it will take longer to heal.
My two worries are I don't have any nerve pain at the moment, I just have a slight fuzzy pins and needles feeling and I feel my ghost foot.
But some poor people have trapped nerve pain that's constant and pulsing. Please, please don't let this happen to me!

So here's everything crossed for next month. 

Being Microwaved

16/03/16

 

Hi all

 

Well I've had my first M.R.I and it felt and sounded like I was being scanned then photocopied.

Also when someone tells you to stay still is it just me or do you want to move.

They put head phones on you and left me listening to Radio Heart (old dance tunes good god!).

I was okay until they jutted me forward and then back up. Probably to move me into position for a better scan. But I would be just lying there concentrating on not moving when suddenly 'jut', 'jut', and my stomach would larch. It took longer than i thought and i asked if they could see the cysts.

They said a Dr had looked over the scan they couldn't see any cysts but some small neuromas on some nerve endings that would be causing me pain.  (when i got home i looked this up and found out neuroma is a posh word for lump of skin. So just got to wait until next Tuesday now for plastic surgeon to review and tell me when my operation is.
 

On the health news i stopped taking my depo provera injection which was due in February and i expected to come on by the end of Feb. But no, we are near April and still nothing. i looked that up on the net and apparently it can take up to 6 months for your body to go back to normal if you have taken it for a long time. erm yes 10 years. so you just watch ill come on, on holiday whilst wearing my white shorts and top.

 

Also can't remember if i mentioned in earlier posts as its not leg related just a general health moan. Since changing my diet to healthy eating I've not been tired anymore or bloated and have had no I.B.S symptoms at all yay. (but god do i need a drink!). But i have had a problem with wanting to go to the toilet a lot like every hour and sometimes i don't even pee very much. This is making me tired as you can imagine waking up during the night bursting for a pee and then just peeing a bit.

i went to the docs and they gave me antibiotics thought i might have a bladder infection and got a blood test done and a pee test. the antibiotics didn't do anything, the pee test came back clear. The blood test came back saying i didn't have Diabetes, yay, but i had low white blood cell count, and they needed to do further tests. So more blood was taken, and she has referred me to the incontinence clinic. No, don't laugh its called that but it deals with all bladder problems i think for some reason my bladder has become over sensitive. i don't leak when i laugh and have very good bladder control thank you very much no massive pissy knickers for me needed!.  also i have itchy dry eyes. Just thought i would add that on.

 

Soooooo...Monday blood test results probably say i have a vitamin deficany, its usually vitamin D and told to sit in the sun more. Then Tuesday scan results and operation date. and i got some comfort drops for my dry eyes, and trying this herbal remedy of the TV for over active bladder until i have to go to the pissy clinic.

 

My mam came to visit today and i asked her how she was and she started to get upset saying she feels helpless that she can't make me better and why all this crap is happening to me. i felt really bad and said may be you pissed off a gypsy didn't buy her lucky heather and she cursed your 1st born. it made her roll her eyes at least it stopped her crying. but i told her theres no point in saying why me and crying. yes i do cry form time to time but will that make it better will it change anything, no. So you deal with it your presented with a problem so you go okay what do i need to do to change this/make it better/cure it. and slowly move forward. you don't take each day at a time you take each hour at a time. hours make days then weeks then years. I still have my hearing, my sight, my voice and my hands. so you just keep moving forward ticking off the hours.

Stuck in the pram again!!

14.02.16


Hi all

Well after finally seeing my plastic surgeon again he suggested that I need an M.R.I to check out what's causing the pain this time rather than just cutting me open and having a look around.

 

I can now put my leg on after getting a longer end pin and having the bottom of the socket made wider, but after only a few steps it's like walking on a blister that gets worse the more I walk on it. There's a lump at the back and something wrong at the bottom right hand side and I think when he took the cyst out he trapped a nerve. Because when I push down on the end when walking a shooting pain runs up the front of my thigh. Basically its all fucked.

I have the date for my M.R.I in 4 weeks then a review 2 weeks after. Then surgery probably a couple of weeks after that. So by May all surgery should have been done and I'm healing.

I decided I wanted to treat myself and booked to go to Disney land in Florida in June. I've never been on a long flight before or to another country but it looks more likely I will be in my pram for this.

 

I quit my role play group in January because I couldn't deal with going to the pub (where its held) on my crutches or in my chair, they did offer to go to the host house and even to come to me. But I've found that I started to get social anxiety leading up to games night and found myself more and more making excuses not to go. I know it's me being silly but I didn't want any attention or compromises made for me, I didn't want to be pitied. I know I wasn't, I know my friends mean well and they were just out to game where ever that might be held, but when your down you think these silly things.

I still socialise on face book and I'm going to an event in April where I will see friends. But at the moment it's taken a lot of stress off my mind just deciding to be on my own for a while.

 

Another thing that bothered me today was my sister posted pictures of her, and her husband showing off her new cycle gear. She had bought her first bike and really liked it and would be cycling with him now regularly. When I saw her picture in the lycra and goggles all I could see was me. I have always been a strong person and it's got me through many tough things in my life, but my sister has and always will be a girly, girl. If anything happened to her especially to her face I don't think she could take it, I will worry for her now.

 

So this is a down post today I'm afraid. I thought after the cyst had been taken out I would be back walking by now, but no it's worse, roll on March.