My appendix got stolen!

Well…. Thats the way me and my family see it anyway haha!

Let me explain..

Around this time 6 years ago I was in and out of Kings having surgery and different procedures. Obviously at the time we were just focusing on what was happening and making sure I recovered. I knew I was having my organs moved and I knew that I was having a stomach wrap to shrink my stomach. But I didn’t think any organs were going to be taken out.

Anway fast forward a few years, where I’m stable and starting to be able to live a normal life… I was living my life focusing on the recovery when… I found out that apparently I didn’t have my appendix anymore!

Obviously it’s nothing to worry about. Appendixes aren’t used anymore and it’s quite common to have them removed – especially with people who have to have surgery in that area.

So I’m not worried about it at all. It’s just funny that i wasn’t told that they were removing.. Or had removed my appendix. I found out a few years later.

Me and my family joke how it was ‘stolen’ haha! πŸ˜‚

So if you see my appendix anywhere… Give us a call! πŸ˜‰πŸ˜‚

Advertisements

Hope at last and … Gangnam style?

I’m a few days late but this post is going to be about what happened this month 6 years ago..

I think the easiest way is to share my statuses and explain them the best I can, so first of all, here are my facebook statuses from March 2013… (By the way – I did have the exact date for each of these but I’ve lost themπŸ˜‚ but they are in order! Haha)

So… this status above. For some reason, in my head they discovered my stomach was large in September 2012 … but by this status, maybe they discovered it later on down the line…

I remember having the tube inserted during x-ray (I was awake). They had to do it under x-ray because of the shape and size of my stomach. It wasn’t pleasant to say the least!

And yes… by this point I was very well known in the x-Ray department. As soon as I arrived I didn’t even have to say my name – they knew me so well and just was like “hey Katie!”πŸ˜‚.

It was also by this point, where I’d had enough of having time of school… I was bored and missing my friends. I was also missing normality.

And this is where Gangnam style comes in… ah. This story still makes me chuckleπŸ˜‚.

So… yeah. Also this status also mentions the time when my surgeon and his team ‘discovered the problem’ – which again, in my mind I thought that was discovered in September 2012 … obviously notπŸ€·πŸ»β€β™€οΈπŸ˜‚. But then again, this may have been an additional problem?πŸ€”

So they found that by inserting a balloon inside of me… they could open up the top stomach valve which was almost so tightly shut .. so much so food was struggling to go down.

I remember being wheeled back to my ward after being in recovery and seeing my surgeon and his team standing outside my door… all smiling at me and my dad. It was weird … but a good weird….

When I find out why they were standing outside and what they had discovered – it felt like a massive relief! I was so happy that there was a reason as to why I had been struggling the way I had been – it wasn’t my fault! There was a problem there! And this problem could now possibly be solved!

Oh and the ‘Gangnam style’ situation …. I can still, to this day see my surgeon and his team dancing around the operating table to it…

I remember this PH Test… I had that tube down one nostril and my feeding tube down the other nostril … it was like my nose was a bloody charging socket! 🀣

I can’t actually remember the results of this test … I just remember how uncomfortable it felt..

Confidence

First of all I’d just like to say … again … I’m sorry it’s been so long.

Mentally I haven’t been in the right frame of mind. And I’ve been trying to decide and prioritise certain things in my life. I’ve been trying to focus on the things that mean something to me in hopes that it will take my mind off the thoughts in my head.

I’ve recently realised I need help. Help to understand what I’ve been through and what I’m going through. And I’ve went on to get that help.

The last few weeks have been a bit rocky but more recently I’ve started to feel more positive again. One of the things I struggle with is confidence. Confidence in myself. Mentally and physically.

Physically, my main worry is the way my stomach looks. It’s not necessarily to do with the scars. (Which a lot of people assume is the main worry). I’ve always had a scar on my stomach. I’m used to them. It’s the shape of my stomach. The way it sticks out on one side.

Due to the amount of major surgery I’ve had – I’ve now got no stomach muscle on my left side meaning my stomach has a ‘hernia’ effect to it. It sticks out more than usual.

I do wear support sometimes – mainly when I wear dresses or if I’m really bloated. But not always, as it does get a bit uncomfortable. A little while back at work, I was asked if I was “having a baby”. Now you’d probably think I’d be offended … but I wasn’t. In fact I found it bloody hilarious! (sorry for the language) I think it’s because I always thought I look pregnant – because from a certain angle it does look like I have a bump. And even though I found it funny at the time – overall Its made me wonder what people actually think. Like, if I was to walk around in one of those crop tops or something – clearly showing off my stomach – what would people think? Would they be disgusted? Would they feel sorry for me? What would they think?

I don’t know why but I think one thing that I think will help me with my confidence with regards to my stomach, is if I shared a photo of it. Just so it’s out there. I guess part of me is hoping that someone else with a similar stomach to mine (I know everyone is unique and different so won’t be exact) will pop up and maybe give me some advice.

So yeah, here it is –

It’s probably the most flattering angle I could findπŸ˜‚. I’m sorry the quality isn’t great – my phone is rubbish. But yeah. That’s my stomachπŸ˜‚. I also think it’ll be interesting to show anyone reading this who have read/know of my story an actual physical representation of what I’ve been through.

Also, I’m sorry if some of this doesn’t make sense – I’m a little bit tired haha.

Ideas

This is a quick post to ask for suggestions about what you, as a reader, would be interested in reading about on this blog.

Unless something significant happens in my life, I don’t really have much to say currently. I could carry on with my story but the next part is the big chunky bit about the year 2013 when a lot happened with regards to having many many operations and my life changing. But ideally I’d like to start that in January – as that would mark 6 years.

Is there anything you’d like to know about me, anything you think you would be interested in finding out about me and my story? Maybe there’s some advice you think I could give?

Let me know by commenting on this or, as I will be sharing on social media, on any of my social media platforms.

Thank you,

Katie x

6 years continued + update on recent events

Hi! I know we’re in the middle of October now, well actually near the end, but I thought I’d complete the “6 years continued” story. To be honest there’s not much more to say, but I’ll tell you what happened the days leading up to me being discharged and what happened after I was discharged. (If you need a reminder of what’s happened up to this point, please check out my previous blog posts with “6 years continued” in the title)

As well as this, I will be updating you on recent events in my life. Quite significant things. To me anyway.

So, last time I mentioned the x-ray I had, the conclusion the doctors came to from seeing my notes, and briefly mentioned the picc line I had inserted.

Because, by that point, I could hardly eat anything – my new consultant believed a picc line would be most useful for me to have. If you don’t know what a picc line is, it’s basically a long tube that goes through a vein in, normally, your arm, to your heart. Or near your heart. It is a form of nutrition. But obviously, only used when people are seriously unwell.

Having this meant I didn’t have to worry about the fact I couldn’t eat and so was loosing a lot of weight and nutrients. This would help build me up whilst I was in hospital. At this stage I also had an NG tube (a tube that goes up my nose and down into my stomach). Gradually, I started having tube feeds. So a milk-like substance with all the nutrients and vitamins I needed was pumped into my stomach without me having to do anything. Little did I know, this was to become a regular routine of mine. I was at Kings for about 2 or 3 weeks (I can’t remember exactly)

During the last week or so I was just resting really. Understandably I had to, but it was hard because I was away from home. Yes, I had my dad with me. But my mum and brother wasn’t with me. They visited a few times, don’t get me wrong, but it wasn’t the same. I missed Home. I missed my friends. I even missed school.

The time came when my consultant was happy for me to be discharged, from King’s at least. He told us that they do need to operate however I still need to become a bit stronger, so he advised me to keep the picc line and NG tube.

I was then transferred from King’s to my local hospital. I stayed there for a couple of weeks. (I think, it might have been a bit longer) During this time I rested, had my picc line flushed every so often and began having regular tube feeds. And because I was now only about 10/15 minutes away from home, I was able to have many visitors. And Dad was able to go home and have a proper rest (because it was a tiring, stressful time for him too).

It was nice, in a way, but it wasn’t my proper home. I wanted my own bed. I wanted normality. I think at this point, I started to wonder, will ever have normality again?

Eventually I was aloud home for day visits. Haha, sounds like it was prison or something. The reason for this, is because I was having my ‘feeds’ at night. And so, during the day, I was free to do whatever. There was nothing for anyone to do to me during the day. So they decided that I could spend my days at home. And they eventually even said I could go back to school (which, by this point, I was thrilled about!)

I was quite fortunate that my school was sooo understanding and supportive. Me, Dad and mum went for a meeting with the assistant head at the time. We explained what had happened and what is planned to happen. Obviously, I had my tube in, on show, too and they took this into consideration, understanding that ideally I couldn’t be in the busy school corridors at break/lunch times and during lesson changes. They decided that I would be best going to a room called ‘AP’ (Alternative Provision – I think). It’s a room where I could do my lessons, have a teacher come down every so often to talk to me and give me some work to do. That sort of thing. They also decided I should be on short days. So i’d only be in for a few hours a day. This way I wouldn’t tire myself out too much.

So a regular day for me during that time, would be that I would wake up in hospital. I’d get up, be disconnected, go have a wash, get ready etc. Then mum would pick me up and take me to school. I would then stay for a few hours then be picked up and taken home. Then during the evening, I would be taken back to the hospital, get settled in and be connected ready for bed.

Eventually, the staff felt that me and my parents were ready to learn how to set up the pump. You have to be trained up on it. It’s quite simple so me and my parents caught on quite quick. When the staff acknowledged that we all knew what we were doing. We all knew about hygiene etc, I was allowed home permanently! I could have my feed at home. I could sleep in my own bed – yay!

We were all so happy! Finally – after what felt like months and months – normality! To be honest, after this, each day was the same. I’d get up, disconnect myself, get ready, go to school for a few hours and come home. I would then go to bed, in my own bed. That’s it. During my time at school, as well as what I previously said, eventually friends would come in to see me and I would also pluck the courage to go to some of my lessons. I thought – yes I’ve got a tube in my nose, so? It doesn’t bother me anymore. Yes people stared. But I just ignored them. That’s all I could do really.

Anyway, it got to November and, I remember this moment quite well, the post arrived one morning. I had just come back from shopping with a friend. It was addressed to my parents I think. But I knew it was about me, it had Kings college hospital on the envelope. This was it. This was the date of my operation. I opened it. I was right. “Katie has been booked for her operation on Friday 18th January 2013”. I looked at it. I felt a bit of excitement – because I knew that this operation could really help me as I was really ill (although the reality of how ill I was hadn’t hit me properly yet). Then all the nerves came at once. I cried. I was shaking. This felt real. I was having an operation. A big operation. I was going under the knife. I was having my organs moved around. Would I make it? What happens if things go wrong? I was scared. I hugged mum and Dad. Of course, I knew, we all knew, I had to have this surgery. But it’s scary. For all of us, but especially a 15 year old girl with her life ahead of her.

Below is a photo of me with all of my equipment. I think it was taken for an art project. I did a project on medical equipment. I found medical art and that and researched them. I drew a copy of this photo. (I thought it was interesting at the time) Sorry, I look a bit miserable – I don’t know why hahaπŸ˜‚

Okay so, nicer things now! I also said in this blog I will mention what I’ve been up to recently. You’ve probably noticed in a couple of my posts, that I’ve mentioned that I’ve struggled with anxiety and depression a bit in the past. I have good and bad days – physically and mentally! However recently, in both ways, I’ve been having many good days. I’ve been feeling positive, confident and quite motivated actually. I’ve challenged myself and taken on things that I would normally hesitate at and avoid.

These things include; going to a job interview and starting driving lessons! It may seem like normal things to many people – but to me. That’s two massive achievements!

Another thing, which I have surprised myself with – is that I’ve started taking up baking as a hobby!

Now, you will find out in detail why I, and my family are quite surprised by this, in future posts but let’s just say, my relationship with food has never been good. I’ve had times in my life when I can’t even be around food. But you’ll find out all about that in due time. So, yeah I absolutely love baking! It makes me happy and it’s a way that helps me show my creative trait.

That is all for now. Sorry it’s been so long! X

Invisible illness: A blessing or a curse?

I realise I haven’t done a blog post in a while. The reason being is that I’ve been wanting to focus on moving on in my life. I’ve been looking for work and just focusing on doing things that a 21 year old would do.

Anyway, I thought I’d make this post about something I’ve been thinking about recently. My ‘invisible’ illness. It’s invisible because no one can see it. I know I have this illness. I know how it effects me. My friends and family know about it too. But they only know from me talking about it. To strangers or just people I don’t really know well, I haven’t got an illness. I’m going to talk about the pros and cons of having an invisible illness.

(Obviously, everyone’s situation is different and I’d just like to say these are my own opinions. It doesn’t mean they’re right and it doesn’t mean they’re wrong either.)

Okay, so pros of an invisible illness (I mean, having an illness isn’t necessarily positive, I’m talking about the invisible aspect of it):

  • People treat you the same as they would anyone else. (If they don’t know about it)
  • What I mean by this is that, because people don’t know that you have a chronic illness/disability they don’t ‘tip-toe’ around you. They don’t talk to you in a way that shows they feel sorry for you. And, in a way, aren’t careful with what they say around you thinking you’ll be offended. Don’t get me wrong, there are people out there who treat you the same despite knowing about your illness. But I’ve seen first-hand how people can change after discovering you’ve actually got a chronic condition.
  • Again, this is my opinion, but I don’t like when people find out about me and assume that they have to be careful of what they say to me. I may be sensitive at times, and it may be hard to tell, but honestly I’m not easily offended. I’ve learnt in life to laugh, a lot, at things that adversity throws at me. If I make a joke about my stomach or something, I want people to laugh along with me. There’s been many times when I’ve made a joke about my stomach and people don’t laugh. They do a little grin and a noise of some sort, but I can tell they feel a bit uncomfortable. They feel like they can’t laugh. Do they think I’m testing them or something? Because I’m not. I encourage my friends and family to laugh along with me. I don’t like when people feel uncomfortable around me. I’m me. Yes I’ve had a few battles. But who hasn’t? I’ve got a few scars, so what? I’m still human. I’m still a 21 year old woman.
    • You can pretend you don’t have an illness.

    This may sound daft but let me explain. There are days where I think that my illness has taken over. Mentally as much as physically. I feel that I’m not Katie, I’m someone who has a chronic illness. That’s not right. I shouldn’t have a label. I don’t like thinking that I’m a person with a disability. I am, but I’m capable of a hell of a lot. There are days where I can almost forget that I’ve got what I’ve got. Focus on other things, like what I’ve been doing recently. Focus on my personality, me as a person. Doing activities that I enjoy doing. It helps that I can hide my illness. My stomach is easily hidden. My symptoms can be easily controlled most days. Despite me occasionally thinking “why me!”, I’m actually quite fortunate given my circumstances. To many people, I’m just a small 5’2 woman with a shy yet distinctive personality. I like that.

    Also, I’m not saying you should pretend you don’t have an illness- if you have one – I’m just saying, for me, knowing that I can kind of push the whole aspect of my illness to the side and not let it get in the way of living is very beneficial.

    Okay, Cons! If I’m honest, I can only think of one at this current stage. So here we go, cons of having an invisible illness:

    • No one understands

    The biggie. Now I know I said how I like when people treat me as if I haven’t got a disability/illness whatever. I do. But there are days where I feel like crap. One thing that can annoy me/upset me is when I am feeling really sick, tired, I’m in a lot pain and I’m talking to someone. I’m trying to not focus on the symptoms but it’s hard, and that person says “you’re looking well”. Now, you’re probably thinking – but that’s a compliment Katie? They’re only being nice. True. They probably think they’re being nice. And they are, I respond by saying thank you and giving a smile. In no way am I blaming them. This is something I can’t control.

    But what I’m saying is, because I can’t physically show that I’m not well, it’s hard to let people know I’m not feeling well. If that makes sense? There are days where I find it hard to talk because of the amount of pain I’m in. People think I’m okay because ‘I look well’. I don’t want to seem like someone who continuously complains about their problems; the amount of pain I’m in, how sick I’m feeling, I just don’t want to be that person. So I tend to keep quiet about it. But sometimes it gets too much and in frustration I will just burst into tears and just let it all out. I don’t want people to think that I’m pretending I’m feeling that way just because I don’t mention it all the time. I feel like if I was that person who constantly said how I was feeling physically everyday, people would see me as someone looking for attention. But if I don’t say anything apart from the days where I am really really sick (which is actually quite rare now) – would people actually believe me? It’s hard.

    Can I also just say, In no way am I wanting it to look like I’m feeling sorry for myself here. I’m not. I swear. I’m not that sort of person. I’m just saying things as they are. In my perspective.

    I guess here, the pros outweigh the cons. Which, for me, shows that having an invisible illness isn’t so bad.