The Long and the Short of it @torie-snelvis - Tumblr Blog

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So it’s been years since I’ve been on here, but I randomly came back on Tumblr lately and thought I’d vaguely update this page.

Things have escalated somewhat in the last few years with my health, and I’ve now been an amputee for 6 months.

I’m getting used to my new life and quite frankly being extra as hell about it all and getting photos done 😂

#disability #neurofibromatosis #amputation #health #recovery #personal #extra

My favourite thing about working in an office are the passive aggressive signs that are everywhere.

#work #workplace #office #humour #call center #passive aggressive

I’ve been weight baring for a few weeks now, so I’ve made good progress. In a LOT of pain at the moment thought because the pinsites are hurting.

I could do with positive thoughts at the moment!!!

#taylor spatial frame #neurofibromatosis #surgery #bones #pain #ouch #mine

Point of view of the frame

#selfie #brunette #taylor spatial frame #surgery #ouch #short hair #selfie stick #glasses

1 month in to my 3 months off work after my surgery and boredom has well and truly set in. My mum and sister are going on holiday this week and I can't go :( Anyone got any tv show recommends to keep me entertained? I'm into crime shows mostly (I love Castle/Bones etc) but will give anything ago.

#taylor spatial frame #surgery #bed rest #tv recommendations #castle #bored #help me

This is what happens when my friends and I get bored (and a little tipsy.) Filmed back in May, edited in July! I'm the chubby Arianna.

#bang bang video #nicki minaj #Jessie j #arianna grande #parody #friends #silly

My latest surgery! It's a Taylor Spatial frame, and it hurts as much as it looks like it does. In some of the pictures the morphine took over - just be thankful you didn't receive the snapchats I was sending.

#neurofibromatosis #legs #leg frame #broken bones #pain #selfie #hospital bed

torie-snelvis

Seriously.

torie-snelvis

More relevant than ever.

#greys anatomy #derek shepherd #meredith grey #seriously #shonda rhimes #why shonda why

New hair, new me.

#short hair #selfie #nosering #hd brow #new me #making a change

I sent my sister a picture of the gift I got her and this conversation followed. I never got over Pottermore sorting me into Slytherin.

#harry potter #Hogwarts #ravenclaw #slytherin #pottermore #potterhead #sister #texts #hufflepuff

One of my favourite moments of 2014 was going to London's opening night of taylorswifts Red Tour. I had a giant leg cast, was in a lot of pain and was only 2 weeks post surgery! So worth it though. The duck enjoyed the concert too.

#taylor swift #1989 #red tour #leg cast #surgery

I wish I had better hobbies. Mainly so that when people ask what my hobbies are I don’t have to find a clever way of saying Netflix.

#netflix #hobbies #i don't get out much #funny #truth #tv #films #text #about me

Waiting Lists

I fall into a category, like many thousands of people do, where what is wrong with me isn’t bad enough that immediate action is considered necessary by the National Health Service. This means that I am on seemingly endless waiting lists leaving me in a very frustrating state of purgatory where I can’t plan anything until I know what the next stage in my continuing saga is.

I’m stuck in this perpetual state just waiting.

And it’s horrible.

Last week I found out that it is incredibly likely I will need another surgery on my leg. Whilst it is frustrating to know that I’m going to need to take more time off work and just stay in bed again for a couple of months I was not upset to learn that this was necessary. In fact, I was kind of glad that they were finally saying what I’ve wanted to hear from someone other than myself for months - the last surgery wasn’t enough.

That might sound strange to some people and I can understand why. I’ve been in this situation for over 3 years now and I have spoken to many doctors, nurses and surgeons who don’t understand what is causing the pain I experience on a daily basis. The first surgery fixed a bone that had been fractured for several years and has provided more support in my lower leg. However, the pain is not better and I still walk incorrectly. The next proposed surgery is being done in an attempt to fix that for me. The next surgery is proof to me that my doctors are taking me seriously when I say that I still have no confidence in my leg.

What does cause me a great level of frustration is that I have to wait a potential three to four months to talk to the surgeon I have been referred to so I can find out if he agrees this surgery is necessary. Three to four months. For those who haven’t worked it out that means it could be December or even January 2015 before I meet this guy. If he gives the green light, which my current surgeon thinks is definitely going to happen, it would be another six to twelve weeks before the surgery took place.

I could be waiting for this surgery for seven months maximum. More waiting.

I know there are plenty of people in the same situation as me. No matter what the reason is that you are on a hospital waiting list the frustration is no different. You are still waiting to find out what your next step is and you learn quite quickly that it can make things difficult to plan. It’s quite likely I won’t be able to go on my annual trip to America to visit my best friend next summer because I’ll just about have finished recovering and wouldn’t find flying all that comfortable. That weighs on my mind. It’s not the end of the world, I know that, and I could go later in the year but it doesn’t make it any easier to accept.

I also keep thinking that this new surgeon could just say no. That he doesn’t think the surgery will help and isn’t willing to take the risk. I hope the fact that I am willing to take the risk will sway him, but I could wait four months to just be told no. Then I’d be put back on my surgeons waiting list and will talk to him again. I’ll find out eventually I guess.

In the mean time I’ll just be waiting.

#waiting lists #NHS #surgery #doctors #Neurofibromatosis #legnam

Happy Birthday to my best friend in the world saltwaterjournal. I wish I could be there today and get up to the mischief we had last year. Skype will have to do today. Love you!

#best friends #birthday #selfie

Unpacking.

Most people would say that the worst part of any holiday is packing. It's stressful, time consuming and you are never entirely convinced you have everything you need until you open your suitcase when you've arrived at your destination. I agree with this notion up to a point but for me the worst part is unpacking. All that unpacking means is that it's over. You are home, back in your normal life and that you probably need to wash all of the clothes you took with you. It's sad. Well, it makes me sad. When my best friend was leaving me at the airport she was upset but I managed to hold it together. That is I held it together until I was on the plane as it was taking off from Salt Lake City and I've kept it together ok since. Until now. Now I'm sat on my bedroom floor next to my suitcase getting upset as I'm pulling out the silly souvenirs I have from my trip. It's a ridiculous image - me surrounded by clothes that still smell like campfire, crying, with a free Malibu alarm clock in my hands. But that's what's happening. It's just hard to know I won't be going back for another year - and that's if I can even afford to do it again. I miss everyone so much already. It sucks.

#long distance #best friend #travel #best friends #personal