66weeks (15months) post 1st op and 36weeks (8months) post 2nd op-

Well I know this hasn't got a lot to do with my back but in ways in kind of does... I went to see my CPN last Monday and she said I'm doing ok with my food diary and at least I'm trying with it, she wants me to carry on doing my food diary but now adding how I feel etc and if it's a bad day (not a lot of food) she has given me too other sheets of paper to fill in, i find it really hard to express my emotions, even writing them down, some parts of me thinks if people know how I feel they will get into all my business which is something I do not want. I am also allowed to weight myself only once every 3 weeks mind ou but I guess that's ok, I have been given some stuff to read on anorexia
And anxiety so I have Ben having a look through them, she said all the stuff I'm doing at hope (food diary, thoughts and everything) are so she can get more of an understanding so she can reffer me on to secondary care.
Also this week I have seen my GP, I seem to be seeing her every few weeks. I have been asking her about anti depressants again as my anxiety is quite bad but she is adamant that I am not taking them, she keeps saying that there will be too many side affects with my weight and build which is frustrating. She even came out with that they have in the past gave children antidepressants so I just don't get why I cannot have any then? My CPN really wants me to take them as she feels I'll benefit from them a lot.

Nothing really has happened with my back over the last couple ot weeks, I havent been up to much but my shoulder blade is hurting a lot still:/ i really honestly don't know what to do. I just hope physio and everything would hurry up so I can see if they help! I also really hope the next time I see mr mehta I came rise my horse and everything again, I am really missing it ALOT, my horse isn't young now and he seems to be aging very quickly, he has athritis in all 4 legs which isn't good at at all!
Kirsty xxxx

64 weeks(15months) post 1st op and 34weeks post2nd op-

well where do I begin? I saw Mr Mehta on Monday so I explained to him about everything that's going on and the pains I was getting the outcome of it all really is a mixture. I am having this injection thing in where my ribcage is because of pain, I am not looking forward to it one bit I hate needles, I'm super needle phobic so I really don't know how this will plan out, I was hoping there was something else that could have been done like the registrar said the last time we went but there isn't. Apparently rib resection is mainly used for people with scoliosis and the part that us deformed is one of the main ribs. I honestly don't know if I'm upset about this, of course I am really, it's lumpy and vile, I'm 19 and I cannot even wear a bra properly because of he pain and awkwardness of it., my ribcage sticks out a lot to me and it bothers me, ok I know I wouldn't have been 100% perfect but I wasn't expecting this before my operation at all. I hate kyphoisis a lot of the times, especially times like this. I don't like to be negative, I really don't but to Me it's quite embarrassing, not being able to wear a bra for more than an hour with it hurting and bothering a lot, even then I can't have anything with wire or anything like that, oh no. I am so thankful for my fusion and I love my new back it just seems to be only me that's having some type of problems.
I am also starting physio again, but this time I think it's at ROH, I am still having aweird psin where max knocked me over so I hope that will help. Other than that mr m is getting my ct scan re check to see if there is a small possibility of them missing anything,

I also saw my GP on Tuesday for a check up. Well I didnt have good news from that either, I weight 45kg 2/3 weeks ago and I managed to loose 2 kg meaning I'm 43kg now, so I am going to see a dietition. My GP is also wanting to discuss weight gain drinks/ supplement stuff. The thought of putting weight on is scary, I don't want to. I mean I'm happy aren't I? I don't want to be over weight, or chubby:( I once had fat rolls, I never ever want them again! My rods and screws are starting to become prominant, we found that out when we saw mr Mehta, even he is now saying putting on weight may help. Like I've stated before I dont like letting everyone down or anything but it's really hard and I wish some people would see it'
I am seeing my CPN tomorrow, so there will be a update on that after its happened.
Kirsty xxxxxx

63weeks(14months) post 1st op and 33weeks(7months) post the 2nd-

Last Monday I saw my CPN for the very first time, I was so nervous, I didn't want her to think what I was saying was stupid, the appointment lasted well over an hour so she could get an idea of why I was there,I know have to write a food diary untill I see her next and write a list of foods I will and won't eat, that's a challenge in its self as there isn't many foods I can think of that I can't actually say I like haha! I also had to go see a gp Wednesday, the one I saw the,at time had no appointments, and the CPN wanted me to go on some anti depressents as they could help, but this GP wouldn't give me anything, I couldn't eve have pain relief for my back that has been hurting a bit lately! Apparently they would all knock me about to much and she wasn't happy giving them to me with my weight, she even had a fit when I told her I was taking 2paracetamol 4 times a day for my back, apparently this is an overdose? I thankfully manage to talk myself out of getting admitted to hospital for a check up because of it!
This week has been quite boring really, I haven't done much other than try and sort jimbo out, it's still very hard and I get tired. The CPN rang on Tuesday to check if I was ok, which I thought was lovely! It was a suprize when I answered the phone and she was talking .

 I am taking paracetamol daily now for the pain near my hooks and my pain in my lower back but it doesn't do much if at all anything. I see mr Mehta again next Monday so we will hopefully get to find out what's going on with my back, I hope nothing bad is wrong. I also see my GP Tuesday, so f all goes to plan I can try and get something to help, hopefully of course!

In other news, jimbo isn't very well, he has now got athritis in all of his 4 legs, the back ones aren't as bad as his front but it is still there, we have to keep him as mobile as possible as it would help. What is worrying the most is because jimbo is drinking tons and  tons of water which isn't like him at all, jim hardly drinks anything in his Stanley but he has been drinking loads. He also isn't eating his tea, he will eat hay and grass but that's it so the vet was to test his bold to check his liver and kidney are ok. I really hope they are, but if it is apparently in the early stages there Is medications
 That can try and help it but there is no gaurentee it will work. :(
Kirsty sxxxxxx

61weeks(14months) post 1st op and 31weeks(7months) post second op-

This week started with my twin having her last pre op assessment ready for her operation, which was spinal cord monitoring, it wa weird to see Jems perspective of the test, I found it funny but odd and laughed the whole was through it but Jem on the other hand said it as vile and painful! Anyway, it was done within 15minutes. I had my laser treatment on Thursday's, it was perfect timing really as my thigh was giving me some trouble, not pain, but it was very sensitive, the laser is actually helping that part of my body, I'm not too sure on anything else, it's weird, it's kind of like i don't really remember what it felt like before.
I went really faint again on Wednesday, I'm trying to eat more and I'm eating more than I did but it is still happening? Apparently even with the iron and vitamin D I'm still looking very pale:'( , if this keeps going on I'll have to back to my GP as I don't reckon it's normal and I did ask him if there was anything I could take for my lower back pain but he just stated he would sort that when everything else is sorted!
I managed to fall down the stairs yesterday landing on my back! I should really have clumsy wrote across my fore head, better still, i will invest in some bubble wrap. I had the same burning pain going up my back like I did when max knocked me over, and I'm hurting and aching this morning but silly me still decided to go for a walk out on my pony, everything was going great, untill the way back to the yard that is, this kid came bombing past on a scooter, those ones that were cool when you was 7 well he was like 14 (not kidding!) well jimbo spooked and went cantering sidewards bucking down this very busy small lane we was riding on! The kid didn't even have the politeness to say sorry he just carried on bombing past Jem nd my friend gabby. I had to get off jim as he was prettified, Gabby kindly swapped horses with me so I rode her horse back. my back is super sore now from that, so I'll stock up on the paracetamol tonight! Since max knocked me over I've lost a lot of my confidence with the horses, I now have this panicking feeling whenever I go in the field to get them, I just don't want to snap my rods, I think it's also because I was comfortable in cantering, galloping jumping and everything before my operation and I haven't managed to get to it yet,I'm still just walking, which ok I'd rather be able to walk on my ponies than do nothing!!!
Kirsty xxxxx

60weeks(14months) post 1st op and 30weeks(7months) post 2nd op-

Well I went to my follow up appointment with my GP and he thinks after seeing me and my blood test results (Although they are not too bad at the moment!) That i may have have Anorexia! How I can have Anorexia? I don't know as im not thin. I have weight on me but apparently not enough, being class as anorexic brings a whole load of new things, appontments, seeing more people, not to mention what my friends and other people will think, there is alot of bad stigma about anorexia, I think he suspected anorexia before I had my blood test as he kept asking about my eating habits and all.  My GP also says this is why im always cold and thinks it has a part to why my hands go a blue/purple colour all the time and why im tired.
I have been given some vitamin D tablet things to take, my Gp was constantly mentioning Anorexia can lead to osteoporosis and He is also stating this maybe the reason why im taking so long to recover from my operations, as im apparently not putting enough in my body to help my back fuse and for me to do normal day to day things.  Its kind of frustrating really, I want to be normal! Is it only me thinks im ok? I like my weight, I love my back, I hate that things are getting in my way, I want to lead a normal life, is that to hard to ask?
Anyway In order to be 'Healthy' I have to gain weight! to 50kg, in all honestly I don't want to, im happy and fine the way I am. When I see the CPN about my anxiety I have also have mention  all this as she may to a further assessment. I don't want to let anyone down by not gaining weight or anything if it going to help but I'm scared to,I don't want to get fat. :(

this was just a quick post really as I did say I would update you, ill post more as this week goes by!
Kirsty! :) xxxx

59weeks(13months) post op and 29weeks(6months) post 2nd op-

I haven't really had time to post anything in the past 2 weeks but here is what has happened. I saw my GP not last Thursday but the Thursday before as I kept going really faint, dizzy and just didn't feel right. Well after him taking my blood pressure, pulse and that, He said my blood pressure is really low and I was looking really pale and 'fragile' also kept mentioning my weight when he weighed me, Im now 42kg and I was around 49kg just before my second operation. Apart from being told I need to gain weight, he asked for a blood test to check if everything was ok, I asked f there was anything I could take for my lower back pain as it is bothering me but he said he would discuss it more when I see him next, I also have to now go see a CPN as my anxiety is getting really bad and out of control, its just everyday over the stupidest things so I have an appointment with her in early October..
Last Monday I had the blood test it was so painful and very hard to find a vein, I ended up being prodded in both my arms with the needle a good few times before anything decided to come out! I have gained a lovely bruise on both arms from that now haha! I had the results back and im apparently anaemic so im on iron tablets to help, I have to go for a follow up Appointment on Thursday not sure why though :)
Ive also been signed off doing anything for another 8weeks, I would love to be able to get on with my life without struggling like I am, I never thought I would struggle this much. Most of my friends are back to work in 3 months but here I am 2 operations, 13months on still finding things hard. I wish I could be like everyone else and just be able to just do things  and just be able to walk with out being tired, I guess life isn't just on my side right now:/
Ive been having trouble with my feet going dead and fuzzy, its happening quite a bit now, its weird I will be fine one minute and then the next they will just go. I had hoped it was just a phase and it would pass but I don't think it will.
As well as my ribcage and the area I was knocked over on, I also have noticed I am having like electric shock type feelings in my right lower back, near my hip it will come and go but its worse when I do things like attempt to muck out. im not sure why I am getting that feeling but it spreads to the side of my hips.
Well ill update you on Thursday when I see my GP!
Kirsty:) xxxxx

57weeks(13months)post 1st op and 27weeks(6months post op)-

Last week I turned 13months post op(56weeks), I had my CT scan last Monday (we dont know the results yet), the scan actually wasn't too bad it just was the waiting in the waiting room and the bus to get to hospital that hurt a lot. After my scan we went to Birmingham Children's Hospital to see my friend who has her scoliosis Surgery, She was nearly one week post op and was looking great! BCH takes the more complex scoliosis surgeries in which the patients need  PICU after the operation. A lot of patients and me are very lucky really that we only needed HDU after the operation, I mean that was bad  enough for me let alone my family. I cannot begin to think of what parents of kids that need PICU would be like.

We managed to go to Barmouth in wales on Sunday, what lovely weather we had for the trip aswell. it was great to get away for the day really, I even managed to have a walk on the beach. I was tired and sore when we got home but it was all worth the lovely day!
Lately I been feeling really faint and lightheaded, and ive nearly fainted on a few occasion's,  Also I still feel tired when I do things, I take my dog for a walk and I cant even take him far as I just get tired, I am going to see my GP tomorrow to see if she can be any help as to why it keeps happening.
here's some photo's from my trip to barmouth with my family on sunday!
Kirsty xxxx