Mixed Emotions

Good Morning, Afternoon or maybe even Evening to you beauties (depending when and where in the world you are reading this)

I thought today I would give an update on my Pain Specialists appointment yesterday.

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It was a very emotional and long (over 1 hour) appointment and I still feel tired from it today! After many tears and smiles, breakdowns and jokes, I had an injection in my stomach. It was a Local Anaesthetic and some Cortisone which was popped in just under my left rib by the Rectus Muscle. Like my little diagram? :) ---------------------->

 The Local Anaesthetic wears off after a few hours and the Cortisone kicks in. Cortisone is a medicine used to reduce inflammation in joints or muscles that can potentially help get rid of the nasty pain. They usually use it in places like your elbow, hip, knee, shoulder, back etc - but as usual, I like to be different and get it in my tummy. Normal is boring right?

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I've been started on a low dose and if it shows signs of helping it has room to potentially be upped. 

Has it shown any sign of helping I hear you screaming? Well maybe screaming, maybe you're not HAHA. Last night I ate for the first time in almost 2 weeks of being in far too much pain to even consider eating. I didn't get up for probably about 2 hours after I ate - partially because I was frightened to and partially because - well... I'm just lazy and like to sit around :). When I did eventually venture off my seat I took a couple slow steps forward. I didn't get hit with a sudden rush of pain and panic for the first time in about 2 years. I was so confused by what was happening and overwhelmed that I burst into tears and shouted out for my mum who came running. I'm pretty sure she shed a tear or two as well. It was like a new feeling all over again because it was something I hadn't felt and experienced in so beeping long. Could this really be it? Have we found the answer? Can I eat relatively normal? My mind was racing. I carried on walking and got ready for bed and the pain started to kick in and build up as I was moving around but I didn't mind - I had WALKED up there NOT CRAWLED up like I normally would. I was so emotional and then slept like a baby through the night which was another first for a very long time. I saw a glimmer of hope. I've also been given a medication that is part of the Epeleptic Drug family to help spasming sparking stupid nerves which can potentially help with pain too. My fish brain memory couldn't retain the name of the medicine so, when I collect it from the chemist I shall let you all know the name of it :) 

SHHH.... Google Pic!
I won't tell if you don't! Deal?

Today, slightly different story my friends. Granted the pain is nowhere near as bad as it can be but it is about 6:30pm and I haven't actually eaten yet. The fear of eating knowing I'm already in pain and that it will potentially and probably make it worse is taking over. It could be the bruising from the injection making it worse or I could just need a higher dose or it just hasn't kicked in properly yet or is it just not working... I got no clue. I need to try find ways to keep calm and get over my fear and anxiety of trying to eat even if I'm already in pain. Even yesterday when my dad put the plate of food in front of me, I became overwhelmed with anxiety and panic and fear about how the food could hurt me still. I honestly felt like I was going to have a panic attack over it! Even though it was Sweet n Sour Chicken (Soya Meat) which I LURVVVVVVVVVV!! I have so many freaking different emotions in my head right now that I could explode into a million different pieces HAHA :P 

Well you lovely human beings, that's all I got for ya today!! I shall keep you all informed. Be sure to comment below any tips of keeping calm and collected! Remember to spread the word to raise awareness and maybe one day find a cure in the future! Please could you be so kind as to check out my Youtube Channel. It always makes me super smiley and happy when the view count goes up and people thumbs up and comment on my things I've put effort (and the energy I do have) into. So if it was you THANK YOU SO MUCH and if it wasn't ..... I'll let you off just this once ;) 

Sees ya later

Stay Strong

<3

The Journey To Here

Hello there you beautiful people

I thought today I would share the experience I have had so far and where I am at right now. I'm going to try keep it relatively short, but hey.. I'm female... I got a lot to say and there's a lot to catch up on! They won't be this long normally... I pinky promise :)

Gastroparesis for me, started pretty much out of the blue. I had spent near enough 3 months in sunny Boston, USA at a camp as a counsellor with the Camp America scheme. I had the time of my life and made friends that I know I will have for life. Especially as I am America OBSESSED, so to spend 3 months there was.... AMAZING!!! I highly recommend you give it a go if you like that kind

of thing! I got home in the September (extremely tanned may I add :p ) and that is when my life was about to be changed forever. I started feeling really full no matter how much or how little I ate and was feeling sick whilst in awful pain. When I did manage to eat a mouthful, it felt like it was just getting jammed in my chest and killed. Having a lump of food stuck in your chest is not cool, not only does it hurt a lot but I mean, who wants to end up with 3 boobs? You never know, if the food kept getting stuck it could happen... right? :)  I can't even begin to imagine how my parents must have felt sitting there watching their oldest child roll around the floor in agony and seeing me eat less and less until I eventually stopped eating all together. I lost so much weight and had gone from this bubbly character to someone who would get up, go to work, come home and go straight to my room into my bed. I became so down and depressed because I felt so ill and had no energy. Doctors trips were pointless and consisted of being told it was heartburn and being given Gaviscon or that there was nothing wrong with me. I had people and doctors telling me it was all in my head, that nothing was wrong. That I must be anorexic or I was looking for attention. I mean come on people, I've just spent 3 months eating my way through America... how can that possibly make sense. I'm a girl who likes my food :) what can I say?

By the May/June time the following year, I'd been through multiple different tests and medication trials. All of which came back clear and didn't work! Eventually we got answers. I had a sense of relief yet horror all at the same time if that makes any sense. On the one hand, someone believed me and found something and was telling us that, actually, there is a problem, it's not in my head. Although on the other hand.... I was pretty much screwed. There's no cure and few treatments that successfully help! Would I ever get to eat again? Would anyone support me? Was I going to die? My head was spinning at 1000mph.

My specialist suggested getting a feeding tube as my body was pretty much going into complete shut down. Can't blame it I guess... it was running on - well - oxygen! This would hopefully get my nutrition up and give us more time to figure out the next step!

And so.... the treatments began!! 

The NJ Tube - don't I look ravishing?

I first had a Nasojejunal Tube placed. It's a tube that goes up your nose, down your throat into your stomach with a tube that goes on into your small bowel/intestine. That's the place your food ends up after your stomach is finished with it. Not going to lie, I HATED it. That's an understatement of how much I hated it. It was so uncomfortable and I kept wanting to throw it up as it would rub on your throat every time you swallow or talk or well... anything. Seriously, hats off to people who manage to cope with it for more than a week like I did. I'd have panic attacks from it and cried and complained and wanted to just pull it out even though I knew it was there to help me. 

My Saviour 

My specialist then decided to move forward faster and give me a PEGJ tube. It's exactly the same idea but hangs out your stomach rather than your nose. It was for all intense purposes, my willy! It was with me all the time and dangled right down which was never fun when showering and well... being naked in there because that's what you do in the shower haha!! It saved my life and although emotionally it knocked me hard and I hated it and was really down - It saved my life and I probably wouldn't be here now had I not had it and got the nutrition I needed.

You Gotta Do What Ya Gotta Do!

Teddy hanging out with my dinner

2 weeks worth and not including meds

My life style completely changed. Instead of planning my life around shops or friends or even work, I was planning my life so I was about to fit in a 12 hour long feed and being connected up to a machine! 

If you think about it, I went to the toilet whilst connected to my feed... 

that's like eating a sandwich or a Sunday dinner whilst having a pee... or more HAHA!! So gross!! Though I did have a great party trick. My dad always joked I could out drink anyone. All I needed was to drink and then syringe it out through my tube before it got into my system and affected me. Could have been AWESOME!! My room became full of boxes with my feed and medication and all the different parts needed to set up and run the feed itself. My room turned into a hospital set up - NOT an almost 21 year olds room! I hated it! 

The tube caused skin granulation and infections and was so painful! I became so self conscious as I had a tube hanging out of me.

Next on the list was the Enterra Device. A pacemaker in my stomach is crazy and people are convinced I'm confused where I have it when I tell them it's in my stomach. They probably think, ah there talks the medication again! BUT... before getting it comes the NHS. I was fortunate enough I got approval pretty fast to get mine as I know many who wait months and fight to get it funded.

Tube and Scars from the Op

Surgeon Ted was by my side

So, October of last year I went into the hospital once again to have my Pacemaker popped in. I've had various settings changed over the last 10 months with many ups and downs. It has helped my nausea a lot for the most part but has done nothing for my pain. I am now under a new pain doctor who I absolutely love so am praying he can help me. I have tried countless amounts of pain relief even medications that are usually used for Epilepsy and Depression but none have worked and I've ended up getting a lot of the side affects from them. I've had many high points where I've managed to eat a meal a day in the evenings and kept it down but had to just sit down for the rest of the night from pain. Then I've had the low points where I have been sick and/or been in so much pain I can't breathe and in tears for hours. Which ends up with me not eating for days or weeks at a time again.
 Don't forget to check out my VLOG I did of my journey too which includes the Pacemaker footage 

http://www.youtube.com/watch?v=92KXsD22aAk

The next step we are trying is Nerve Block. Yep, that is when they just block the nerve. So, if it works my new party trick will be 'I bet you 1million pounds you can't hurt me in my stomach'! HAHA Hey, you have to try see the funny in everything!! They block the nerve with the injection which basically in our language stops the nerve working and sending pain to the brain. The nerve block is being done tomorrow (Thursday) so all our fingers and toes are crossed firmly! This feels like it's my last hope. If this doesn't work, I have no idea how we will get the pain sorted and whether I'll be able to eat anything again let alone particular diets that work for me. 

Well, I'm going to leave it there for now... if you made it to here and you're awake - YOU ROCK hahaha

Be sure to pop your email in on the page to get updates of when I post a new entry and please leave comments below. I'd love to hear your thoughts and answer any questions! Be sure to check out my youtube where I post videos and have a blast.. come join the fun!! 

Until next time... 

Stay Strong

<3

Gastroparesis Explained?

Hello all you lovely people,

So, Gastroparesis - what is it you may ask? Don not panic, I'm going to tell you all.

Gastroparesis is when your stomach takes its sweet time to empty. So, in doctor terms it's known as 'Delayed gastric emptying'. It means that when you eat, instead of moving food along it let's the food sit and have a party in your stomach. Believe me though, it doesn't feel like a party. Gastroparesis is when the nerves to the stomach are damaged or stop working and causes the stomach to be paralysed. The Vagus nerve to be precise! The VAGUS nerve not VEGAS, though I'd more than love to be there right about now :) It can happen to anyone of any age, though does seem to be more common in females. WHY? I have no idea though I wish I did! 

• Being Diabetic
• Damage to the nerve during an operation
• Parkinson's Disease
• Multiple Sclerosis 
• After pregnancy
• A virus 'leaving its mark'

Or, the most common cause is completely unknown. Otherwise known as 'Idiopathic Gastroparesis' which is what I have. That basically means for us people who don't do doctor talk, they have no idea why you have it... you just do so deal with it.

There is NO CURE to this condition, only ways in which you can try to manage it. Symptoms of this condition can vary between sufferers but they can include things such as:

• Feeling full early when eating
• Bloating
• Pain and discomfort in the tummy
• Nausea
• Vomiting
• Weight loss or in some cases weight gain

I WANT TO STRESS THAT EVERYONE GETS DIFFERENT SYMPTOMS AND OF DIFFERENT LEVELS! And everyday is very different. One day you can be relatively ok, and the next, you are curled up in pain and can't even tolerate a sip of water.

I'm going to try and explain to you how this feels 24 hours a day 7 days a week the best I can. Remember when you last had a really bad case of the flu or a virus. Remember how you were feeling sick and being sick all the time, weak, tired, achey, couldn't get out of bed and just generally feeling like absolute poop with no energy from not eating or keeping it down? Imagine that all day everyday with added pain in the stomach and feeling like you are starving to death but can't do anything about because if you eat, you either throw it straight back up and/or end up with even more excruciating pain. Well that my friends... is Gastroparesis.  Only, it doesn't go away after a few days and we have to try and get on with every day activities and well... LIFE! I've been told that the pain is worse than giving birth but I have no kids so I can neither confirm or deny that, all I know is it is freaking painful haha :) I just want to make it perfectly clear that Gastroparesis sufferers want nothing more than to eat and keep it down, hence get rather upset when told it's a choice or that it's anorexia or attention seeking or all in our head etc.

A diagram I thought might help?

There is no cure for this illness and not many people have even heard of it. Medications can sometimes control the symptoms and others it can't. Many of us sufferers need different types of feeding tubes such as Nasojejunal Tubes, PEGJ Tubes, JEJ Tubes, Hickman Line and many more in order to have nutrition inside of us, ultimately keeping us alive and saving our lives. These tubes go into our small intestine, avoiding our stomach and putting it where it's meant to go.

The Pacemaker

The newest form of treatment that isn't always successful and isn't always funded on the NHS here in the UK is the Enterra Device. Otherwise known as 'the tummy pacemaker'. It does exactly what a heart one does and sends pulses into the stomach, making it contract and move the food through rather than sitting and rotting. It is primarily to help the nausea and vomiting. I can confirm it does very little to nothing for the pain from what I've experienced. Again, this is NOT a cure, simply a way to manage the condition.

This condition needs more awareness and more research done on it so be sure to spread the word!! 

I don't want to bore you so I will leave it there for this post and end with some pictures of me over the past 2 years. For more information on Gastroparesis, check out the Gastroparesis UK website - www.gastroparesisuk.org

Nasojejunal Tube 

Gastroparesis is life changing and stays with you for life. Learning ways to deal with it is the way forward and the more support we get from friends and family, the easier it will be!! 

PEG J Tube & after Pacemaker Surgery

Stay Strong 

<3

Welcome To The Drama

Well... Hellooo there everyone

Well, this is scarier than I thought it would be. I have written and deleted this post more times than I've had hot dinners and that's not even a joke as you'll soon understand if you read more. So you should do just that :) ... please??

I'm not a writer by any means but I'm hoping that this will be a place to help others, release some feelings/thoughts and share some fun and amazing things with the world.

I am splitting this into two (if I work out how to haha) sections. One section to share experiences, youtube stuff, make up, fashion and anything I want to. The second and main reason for starting a blog, is to share my experience of Living With GASTROPARESIS. I'm not going to go too much into it on here as I am going to post a blog about it pretty much straight after this. To give you a quick idea, Gastroparesis is the paralysis of the stomach leaving the person unable to eat/drink normally without throwing it up or being in pain. There is no cure just a few treatments to try and manage it. I'm hoping that by sharing how I cope on a day to day basis will not only help me by letting it all out but help others who are either suffering or know someone who is suffering and maybe find ways to understand it more.

This is me... I never said I'm normal ;)

Let's have fun and enjoy reading and sharing. I'd love to hear what you have to say on any of the topics I talk about, so be sure to leave comments and feel free to talk to me on other social media sites as well, that will be linked somewhere within my page. You'll are going to have to bare with me, I never said technology and I got on very well :) 

Stay Strong 

<3