79weeks(19months) post 1st op and 49weeks (11months) post the second-

Monday we saw Mr Mehta for my sisters 6 weeks check up and we also saw him for me at the same time for a results! (lucky him...I think not!) to start off jem's back is looking lovely!  she is having to have a few tests done because of her pain though, she had the xray when we were there and the CT scan Friday, so we are now just waiting for the Ultra sounds scan and the follow up appointment:)

I do have some good news for me though! my spine does seemed to have fused!!!! weheyyy!  also my Ultra sound scan came back that they couldn't find anything wrong with my shoulder and why it hurts, so im having to go see shoulder specialist. I also asked him to measure my post op xrays and guess what? im so proud and happy! my kyphosis has gone from 95degrees to 55degrees! yay!

Im still not able to do anything with the ponies :( its a shame really as the show jumping season starts in may and I really wanted to go to my local shows again, like I did before my operation, infact I was hoping for everything to be able to go back to 'normal' but I guess not. I really do miss it to be honest, I haven't rode properly for 19 months! longest time I have ever gone.

its quite funny really, when first talking about the operation when I was 16/17 my consultant at the time said id be able to go back to it at 6-12months then it was more like 12months now its been longer and im still not on board:(

It seems everything revolves around weight and what is said on the scales, cant do anything until I gain weight but that in its self is so so so hard! im petrified im going to be fat, I don't want to look in the mirror and see fat rolls like I did before, its hard for someone else to understand, I know people who  are thinking 'its only a bit of weight, it wont be that hard to put on' its not just about the physical change its about the mental change as well, I have accept it, which at the moment im finding so hard to do. to me its a scary prospect. It will be hard to accept it and it will be even harder to gain the weight.. to get to the weight my Gp wanted me I have to put on 9kg!! to get a BMI of 18.5 (minimum of healthy weight) I have to put on 5kg, that's going to take a lot of food!

I saw my Gp on Tuesday, and she is really happy the tablets are starting to help with my anxiety but she also mentioned something else she has been thinking of since meeting me back in September. She is thinking that I have a learning disability! again how could that be possible and how can people only just if picked up on it? it doesn't make much sense to be honest, anyway to her it does and she is going through all my medical records in the next week or so and ill see her in the next few weeks, if she does really think I have one then she is sending me to see a learning disability specialist.

why cant anything seem to be going good at the moment? it seems I just get bad news after bad news!
not good at all.
ive included a photo of my post op xray:D so happy
Kirsty xxxx

78weeks(19months) post first op and 48 weeks (11months) post the second operation- )

So on Monday I saw my CPN again, I haven't seen her since well before Christmas so this appointment was overdue.. So I though.. Apparently now because I am seeing a CBT therapist I am no longer allowed to see her and have appointments with her, it seems all the time and work, I've put in for her (thoughts sheets, feeling sheets) were a waste, she couldn't even look at them as it would be classed as interfering!  I am only allowed to go back o see her if I don't think CBT is working ( and even then she can't do much!). I find CBT ok I guess, I don't always understand what he is on about and some of it goes over my head but I dont think I've done it longer enough for it to help...I only have 3 or 4 sessions left, so I don't know where to go from tere to be honest. The flouxetine seems to be helping with my anxiety a bit, it's not as bad as it was. It's still there but I feel slightly happier and calmer, which is lovely!!!

Tuesday I went to my pain management appointment and there isn't really anything else apart from lasering every few monts they can do:/ I doubt I can stand leaving it for a long time, I keep getting flare ups. The PM doctor can also only suggest meds to my GP to help ( because of my other tablets I'm on) so I don't think I'll be allowed those.

Tomorrow is a new week- woo!! We are seeing mr Mehta tomorrow for an emergency appointment- my sister is having some trouble since her operation so our GP wants her to get check out as soon as really, meaning I get the dreaded SPECT ct scan ad then my ultra sound results off my physio as I have that tomorrow too!-  going to be a hell of a stressful long day.

Kirsty:) xxx

Mental Health Awareness day- time to talk, time to change.

So today is Mental Health Awareness day, so I guess I'll do my part and talk about my own problems dealing with anxiety.
I don't always share how I feel with my anxiety because everyday is a battle, every day I go through the same sick to my stomach feeling of worry and dread that something terrible is going to happen, I can't go even an hour with out constantly panicking about something, 'have I done this,that?, omg this isn't right, the whole day is going to go bad now'. The annoying nervousness and worry of silly things, that everyone would take for granted, like going to a shop and buying something, or goingin to a fast food place and ordering things, it makes me just want to curl in a ball and hide. I can't cope with noisey, crowded places, that are full of people, I fill up with fear and dread and I can't dal with it.
The worst thing for me is answering the phone and talking to someone, it terrifies me, I just want to go hide and I want the whole world to swallow me up, my stomach starts to churn and I feel sick, panic and get really hot. I just can't cope with the feels so I aviod using the phone and calling people.

Ive recently started a new antidepressant, fluoxetine 20mg to try and lift my mood and try and help me cope with the feelings better, I started them Tuesday and they should start working with the next few weeks, let's hope they can help this time as citalopram 10mg didn't help at all. I just had all the side affects, which wasn't pleasant to say the least.
Anxiety can make someone feel quite isolated really, as no one really can quite understand it or how someone feels, I know a lot of people say its stupid and I am over reacting but the fear,dread,feelings are real!
I'll update you on how my weeks gone in the next up coming days:)
Kirsty xxxxxx

77weeks (18months) post 1st op and 47weeks post 2nd-

Following on from last weeks post I'm going to write something that's been on my mind a lot since I saw my CBT therapist for he first time Wednesday.
I've been thinking a lot about feelings, words and reactions, my CBT therapist wanted to get an idea of how I thought about myself and how I see the way I looked/felt and the actions that came after and a big thing that came up was self worth, like how much you are liked by people and how you judge your worthiness by that, well this is how by therapist got me to think of it, not everyone needs to like you and you are going to like everyone, just because 1 person like you and thinks your stupid/ worthless that doesn't mean everyone, the whole world does, there are plenty of people who like you for you. He got me to think of my college course and think about why people liked me there, it wasn't because of the way I looked or the way I acted, it was because we had a common interest which I think helped. They actually like me for me, they didn't push me away because I was different.

Everyone is there own person, not everyone is the same, it's what make us unique and us, well, us.  Nobody, your friends shouldnt care how you look, or define you by height, weight, or how you look. If they do then, they aren't friends at all. When you are feeling down, sad, depressed, upset just think about all the good things that make you, you, like your smile, your laugh, it could be anything. If it els repeat it out load- sound silly right? But try it it may help! CBT therapy is all about looking at how you think and act, challenging it then changing it. Which might help.

I know this post is a little off topic but in ways it's not. It's a living problem people have to face.
I just want people to know they are not alone and like for me there's People that can and do help.
Kirsty xxxx

76weeks (18 months) post 1st op and 46weeks (10months) post the 2nd operation-

Its now been a year and a half since my spinal fusion surgery! im amazed I've got this far, If you would have told me  that id look like or be the person who I am now, back then i'd laugh in your face.
 Im a different person- by that I mean in a good way! I have more confidence and a overall better out look on my life, my curved spine no longer defines me, I know it shouldn't have but it did, it completely changed how people saw me, they did see me for the real me they just saw me as Kirsty, you know the shy,  short, hutched back girl who wouldn't even have confidence to go speak to someone including friends, but now my life is getting better as I get better.

i feel that a part of my confidence actually comes from my scar, its may sound very daft but for me it doesn't, our scars show courage, bravery, it shows we have been through something so tough, so challenging and have made it through it better than we ever was, its life changing and not many people can say  they have a scar going from the bottom of the necks to near there bum, but we can. We are in ways are like warriors, we fight and we then carry on, we have own our little battle wound to prove it! we shouldn't be a shamed of our scars they are a part of us embrace it, i for one am super proud of my scar and i think everyone with one should be aswell!

It still amazes me how many people see my scar and have try to pass comments, on how i should get a tattoo over it or cover it up, why should i? my scar is me, i shouldn't have to, if i want to go out in a low cut top to show it, i have every right to, why should i have to be ashamed of something i find beautiful, so straight, and something that means a whole lot to me, i shouldn't have to,nor should you have to aswell.

this is a picture of my scar now and a photo of my scar when i first had my operation, Also here us a picture of my sisters scar when she has her dressing changed Wednesday night.
remember-  In every wound there is a Scar,Every scar tells a story, A story that says i survived'
Kirsty! xxxx

75weeks (17months) post 1st op and 45 weeks (10months) post my second-

Guess what? JEMMA DID IT! just like I said she would! shes now 10 days post op and at home recovering! she came home Wednesday(8days post op) after spending 2 days on HDU and the rest of the days on the ward, I have never ever ever been any more proud of my sister that I have been in the past 10days! her operation was 7 hours and 45mins long and her spine is now fused from T3/4-L2! she has had an AMAIZNG correction! ill be adding her xray photos and a few photos from her hospital stay down below. She found it so tough and hard but she proved to herself she could do it. I mean she stood the day after her operation and walked 3 days post op! awesome and amazing work!

this past few weeks I have been having physio for my shoulder and back but sadly it hasn't been working, it still causes me great bad pain and apparently it does stick out:( my physio is on about getting a scan on my shoulder blade and shoulder to see if any damaged was done and I may have to see a shoulder specialist! I have physio again in 2 weeks, and we will see if its made any difference if not I may be discharged:/
I have my nuclear bone scan  next Monday (eekk!) I will admit im quite scared!, purely because its at a different hospital and its involves an injection (very needle phobic!) I will be at the hospital for most of the day and the scan itself takes 1hour! after that it wil just be the wait for the results, which again im so nervous for!
I have been struggling the past few weeks, my lower back pain is going crazy, I have probably been over doing things when jem was in hospital but paracetamol and my TENS isn't working at all.  Since the weather is colder my sensitive patches on my body have been playing up, its more noticeable and annoying, I can wait to see pain management again in hope they can do  something about it! my appointment for that has been brought forward 2 weeks as it is now 14h march!

Well things with my weight etc haven't been too good either, ive lost more weight- im now 41kg! I really am struggling I am trying my hardest and im still waiting for my appointment with the CBT therapiest and now a psychiatrist as my GP has said I need more help. I am still been closely monitored every 2 weeks still:/ there is some goo news I have an appointment with a dietician its on the 4th of march (ill be 1 year post my second op then!) im hoping she/he can help me, as I certainly need it I guess.

here are some photos of jems hospital stay and her back before and after. and also this is a photo of my back now!:)
Kirsty xxxxx

73weeks(17mobths) post 1st op and 43weeks(10mobths) post 2nd op-

My twin sister's (Jemma) operation is very fast approaching, I mean seriously, she is going into hospital tomorrow night for her operation on Tuesday 6th! I'm getting nervous, more nervous Than i was for mine that's for sure. I am now starting to understand how my family felt when I had my operation, the stress, the worry, the fear, and then the unknowns of recovery. It's hard but as a person that has gone through e surgery I am getting the picture that us who are the ones going through it have this amazing ability to cope!- sure you'll cry, yes it will be hard and you won't be 100% pain free but we as patients are strong and find our own unique ways to battle it out and come thought. One thing is for sure-you will!!
I remember the days leading up to my operation, everyone was faffing, asking questions and well to be making a huge fuss! Sure ts a massive operation but what I (not everyone) wanted was normality and space. I didn't like the constant thing of asking how I was feeling about because well, of course i was scared and didn't know what to expect around the corner, but the last thing I wanted to do was have a break down in front of everyone, I didn't want to put that extra bit of stress on my family, so I found my little way of coping and that was through music!:) I loved listening to music at the best of times ( doesn't everyone?) but I found I could actually have time to my self and get my head around things when I just had switch off from everyone, there's nothing wrong with it!:)

I remember my admission night in hospital the day before my operation- wow-  I never knew hospital could be that annoying! I was on the adults ward as I turned 18 before booking it in but they let my mom stay etc ( how sweet your probably thinking?- well it was in ways but you've never heard her snore!!). It was weird, wasn't quite but it wasn't noisey, there was grannies pressing there panic buttons every few minutes and then you had the nurses stamping there feet, But luckly I had a side room do I shut my door and tried to drown the noise out abit- I still didn't sleep mind you!

I had pre med at 7:45am in the morning and boy it good- by that I actually mean I don't remember anything! My sister said I through a questionnaire at one of the nurses and was talking aloud of rubbish. Me and my teddy ( spud!) was wheel down to theathre about 8:15am to get all sorted for half past, I don't remember a thing! 12 hours later I came out of theathre and my family saw me in Hdu at 9:30pm. I looked dreadful- but you going to! It didn't hurt as you have morphine and lots of other drugs and to be honest I mainly slept that night the next day and for a number of days after.
In total I spent around 10/11 days in hospital, I sat up at the edge of my bed 1say post op, stood up on the second and took 2 steps and sat in a chair on my 3rd! I didn't anything else untill I was 5/6days post op purely because something happened with my lungs ( or something, I have no idea!!) either way that and the fact I had to have blood etc et. Each day did get better, I faced a new challenge yes, but as I commented earlier, it's amazing how we adjust and cope!

I will go further into detail soon on another post but in the mean time, I have a date for my spect CT scan! It's on the 19th of jan, it looks like a whole day thing as I will be there from 12:30-4pm! (damn you nuclear dye) it will show if I have fused or not and for other problems as everything that's wrong will light up- kinda like a Christmas tree! I'm nervous about it as I'm scared of needles but it's got to be done:) I had physio on the 29th of December- he thins I may have done something to my shoulder when ax knocked me over so he wants me to go for a scan and maybe see a shoulder specialist! The fun eh? Well that's all for now as my arm is hurting from writing all that haha.

Kirsty xxxxxx