Chest Infection,Job, Florida & Eating? - Gastroparesis/General Update

Helllllooooo Lovely People

It has been so long since I last posted and with so much going on. 

I don't even know where to begin but I hope you are all doing well.

Lets see…. So 2 weeks before I was flying out to the States I got a rather bad chest infection. I don't even remember the last time I had one or if I've ever had one. It was horrible. The pain was as bad as my Gastroparesis pains at some points and it was so hard to breathe at stages. I had a high temperature and felt like complete and utter shi* to be quite honest. It doesn't end there mind you. As if that wasn't bad enough, my tube got blocked on this same week which meant I couldn't take my medication through my tube which meant my GP symptoms suffered too. NIGHTMARE. You think that it ends there? HAHA come on…. this is me we are talking about…. I don't do things by halves. I then had a reaction to the second load of antibiotics and bought each dose back up and had blood in my poops to be polite (probably TMI I know but I like to be honest with you). I then had a new tube put in 5 days before I went on my holiday. Apparently I had a reaction to one of the medications they use to knock you out and my arm that had the cannula in all went read. Can't say I witnessed that mind you as I was sparko.

That all put aside, I had an AMAZING holiday with my best friend in which I thankfully was well enough for and kicked GP's butt. I ate a few too many pancakes and Cheetos and still had an amazing time and did what we wanted to do. I also become very accustomed to a Starbuck Cotton Candy Frap or 2 or 3 or so. They're so so yummy and seriously need to be bought over to the UK…. Just saying! I may have got the consequences but I managed to put my mind set into 'I will do what I want and the pain will go away'. Okay, so it didn't go away but mind over matter can do a lot when you really put your mind to it. Can't say I've eaten all too much since I've been home as I still feel extremely bloated. America was amazing. It is 10 years this year since I last went to Disney in Orlando, so it was pretty special. I got some amazing pictures of the Magic Kingdom Fireworks display and of memories that'll last forever. I managed to achieve so much in those 10 days all of which I am so proud of. Everything went so smoothly aside from the shuttle getting us to the airport late on the way home (unfortunately we were still able to check in and get on the flight home haha) I also bought and spent so much it's ridiculous. All work no play for me for the foreseeable future haha.
Here are just a few (of the 730) pictures we took whilst there :D

We had a hat challenge to get as many pictures
with as many different hats … I'm a rude girl!
Didn't you know? 

Jelly Donut Pancake….. Only in America would you get
for Breakfast

Such Amazing Fireworks and Castle
projection shows :) 

Take Me Back - This makes me look like a pro photographer

You've gotta have one posing in front
of the Disney Castle..
of you haven't been there!

OR TWO :D
Sorry about it being on its side. Can't seem to change it!

Again ….
The Hat Challenge (looks like it matches my outfit though)
And for it being on its side!

Chocolate Peanut Butter Pancakes… For Breakfast
ENOUGH SAID

Oh Hey… another hat

Hey Minnie, how you doin'?

Quack Quack

On the eating pain, it is definably still there but like I think I have said previously, the pain seems to come with a delayed response. Which helps me out because I can get somewhere and move from the table after I eat and get somewhere more appropriate. I think we are going to layer up the Pregabalin to try get the pain more under control because I am still getting bad pain at times and sharps pains after I eat all the time which can and did sometimes stop me being able to do things for a while after which sucks soooo much!!

As of Monday 24th March, I am now a Receptionist of a hotel and not working at Starbucks. It took me ages to make the decision but I think it is the right one moving over. I'm still within the same hotel I was already in, so that makes it a bit easier as I already know the staff and the hotel and people in other departments etc. It's so weird not knowing what to do for the first time in 3 or 4 years I think it is now. I'm used to telling people what to do or what needs doing, not me being told or having to ask questions all the time. I can grow so much more now and have so many more opportunities being on the Reception as I couldn't go anywhere from my Starbucks job. It was time for change and my new manager in the Reception is so lovely so that's even better. She's so supportive and seems to genuinely care which is nice to have :) So far, my mind is just spinning on overload with all the information thrown at me but I'm sure it'll all get easier over time. I managed to half check someone in today… it's just when it gets to the paying and charging their card I get a taddddd confused and pass it over hehe….  I shall keep you updated on that.

I think that is everything covered without going on for too long and boring you all to tears. We wouldn't want that now would we?

I hope you've all been well!!

Todays question for the post is: If you could change job, what job would you change to?
Let me know in the comments below or on my Facebook or Twitter

Stay Strong
<3

America, Donuts & Cookies.... Err yes please!

Well Hello there all you amazing readers,

It's been a while once again!! 

Do not fear though, I am back and ready to type… So lets do this! 

Last time we spoke, I had finished with the Hypnotherapy, helped organise and then attended a staff party and was set on the idea of moving to America! Since then, I have had some medicine changes, booked a holiday to FLORIDA in the U S of A, consumed a donut and a half in the space of about 5 minutes, consumed a few to many cookies and a bowl of pasta. 

The Pregabalin I've been taking has been increased to a higher dosage and we have also added another medicine called Clobazam. It's in the same medicine family as Pregabalin, it just works in a slightly different way. The hope is that the two of them will work nicely together and help with this stupid darn pain. I've been taking the highest dose that I'm allowed to of the Pregabalin now and it seems to be calming it down a fair amount. I managed to eat some pasta and wasn't dying as much as usual which is a plus. I also managed to have two Millie's Cookies (which are the best type of cookies) whilst out shopping… well in the car on the way home from shopping which is close enough and was in little to no pain!! Like… What??? I can't even … just PARTAYYYYY.

Even though I managed some cookies, that's no going to keep me going alone. So next, we've added the Clobazam. I've only had one dosage of this medication so I can't tell you what the affects of it are. 

I did however, just eat some noodles and random veg followed by a donut and a half. I suddenly started craving them after dinner and my brother very kindly said he'd go out and get me some. He bought 4 back. I had one and smothered it in sugar and there was one donut left. My mum didn't want a whole one so… me being the kind, considerate person I am, offered to have the other half for her. They were super yummy and I want more!! I'm in pain mind you….. I'd say maybe a 5 out of 10 - not too bad I guess. Normally my pain is just under my left rib, however, today it is slightly higher on the rib. Same pain and still sharp mind you!

YUMMMMMMMMMM - I WANT MORE!

Lately, I've been getting the feeling of being faint and my concentration levels are well… non existent which is throwing my hearing out too. In my last pain specialists appointment, I was there in person but my head was just not focused at all and felt drained with no energy or motivation. It's making work difficult because I can't focus on what orders people are giving me or don't hear it etc…. have any of you had this and if so, do you know what causes it or anything? 

On a positive note, I AM GOING TO FLORIDA!!! My best friend and I are going to America to see Mickey Mouse. I am soooooooooo excited. It has been 10 years this year since I went to Orlando, so I can't wait to see it now. We fly out on March 9th and it can't come sooner. Just the break and get away we both needed! My bank isn't so happy or excited but who cares, you only live once!! 3 weeks 4

days!! Not that I'm counting or anything!! I'm thinking of maybe doing like a video blog whilst I'm there of both just my trip but also how I cope and just generally how it all is having Gastroparesis and a feeding tube. Let me know what you think of the idea and whether it's something anyone would like to see. Just leave me a comment below or tweet me a question or even Facebook me one… I'm not fussy :) 

Well, I think that covers just about everything. Maybe I've missed something out but I can't think of any other updates for now! 

So my question (asides from the other ones I've asked in the post) for today is: What is you dream holiday/vacation?

Stay Strong

<3

Success At The Party! Take That GP - Gastroparesis Update

Hey Hey Hey :) 

How You Doin'?

This could be a long one again… so grab a cuppa or pop your feed on if you're a tubie like me and lets read!

So, I wasn't planning on posting today and felt pretty darn poopey. We all get those days where we feel defeated right? Well, I'm having many of those days right now! The only reason I decided to post was when my dad told me about someone he was working with today who's sister has GP too. They called her to see who she was under and such and turns out, she is under the same specialist as me. She also is under one of my old and may I add useless pain management guys who we had renamed as Professor Hopeless. I don't know if any of you watch Holby City but if you do this should give you a giggle. 

This Is Professor Hope From Holby
He's great at his job though!

This pain guy looks just like Professor Hope. He has the same habits and disorganisation and is just very much like him only is ''hopeless'' rather than gives ''hope''. Back to the point, my dad actually found out that this girl knew me - well at least through my blog and videos. Apparently, on bad days she'll read it and it can help her feel less alone, like someone understands. It was then that I really felt like sharing my experience doesn't just help me, but it can actually reach out and help others. It made me feel a bit better and less useless if you like. Gave me a bit of that uplifting feeling that I needed - if that makes sense. I know how she feels and many others who suffer from GP and all other sorts of illness. And so, here I am…. ready to give you another update and continue sharing my journey with you all. Just before I do get into it, I would love to chat with you too and hear your experiences so be sure to leave comments or tweet me or Facebook message me ETC… Right ok, lets do this :) 

I had one more hypnotherapy session almost 1 week ago now. It was actually the best session I've had so far. It ended up being more like a counselling session whist in hypnosis but was good. She asked me what the one thing was that I always wanted to do and so I told her it was to move to America. She told me to do it. Obviously not right now as my health is quite clearly too unstable but she told me to use this time that I'm not able to be out doing stuff or whatever to plan what I want to do once I'm able to. Show Gastroparesis that just because it stops me doing certain things now, it still doesn't win because I get to use this time to plan things that others may not have the time to do. She reminded me that I need to start doing things for me and that are going to make me happy and feel less stuck like I do. I need to do a job I enjoy, I need to do things on a day to day basis that I enjoy and make me happy. I now have my mind set on moving to America in the near future, getting a job out there and really show GP who's boss. It might be just something I need to get out my system or it might be something that will turn into something amazing and I'd be super happy but I'll never know if I just say I want to do it and don't do it. Not sure my parents are best happy that I'm planning to go half way across the world but gives them an excuse for a holiday once I do it!! 

I am going to move to America
I feel happier and calmer there no matter
what the circumstances.
I need the fresh start so I WILL make it happen!

If there's one thing you take away from this post today, let it be to remember that this is YOUR life, no-one else's and you have to do things that are going to make YOU happy and enjoy your life and what you are doing. We all forget that but at the end of the day, you only get one shot and we don't know how long it's going to be so don't keep putting things off and saying I wish I could do something…. DO IT… MAKE IT HAPPEN! Anything is possible and you can achieve it if you put your mind to it :D If you're in pain after you eat like me, sit on your laptop (not literally) and plan what it is you want to do… Show Gastroparesis or whatever the obstacle is that you will make the best of whatever you have been given and if that means put plans into place for once you kick its ass then do just that :D 

More on the GP and pain side, she told me that I have to remember that, I deserve to eat the food and my body deserves to have it. I can't think that I don't and give up trying to eat!! Also, to use the time after I eat when I'm in pain to plan things I'm going to do so when the time is right, I just have to put the plan into action. It's also a way of distracting my mind because if you think something is going to hurt before doing it, the pain is going to be 10 times worse because your body basically makes the pain before you even start. The mind is the most powerful thing and it's only now that I realise why they wanted me to go down this route. Though at £240 a pop, it most certainly won't be a regular thing but maybe once a month? Can't hurt if they're like the last one was right?

On a very positive note, I had our Christmas Staff Party at work on Sunday just gone. I helped organise the whole thing so had to be there but had been super worried about the fact I'd be on a table of 9 other people eating a meal for part of the night. The hypnotherapist told me I should try make light of the situation. Ask the others what it tastes like and if it wasn't great have a joke etc. When the time came for my table to go get the meal from the buffet, my heart was pounding and I became really uncomfortable. I was afraid to even try and eat as I hadn't yet and didn't want to ruin the rest of the evening but I suddenly felt too uncomfortable to wait on my own at the table whilst they were up.

Who said a tube or a health condition
can stop you?
I say otherwise!! 

I guess it was because the other tables would see me sitting there alone. Even though the majority of the people there know all about my health, my mind took over. So, my friend said why not see if there's something to nibble on or even have in front of me just to feel a little less isolated. So, I did. I went up, picked up one of the small round pitta breads and a couple of nacho's and went back to the table with everyone else. I just left it sitting there for a while and then thought, screw it, just go for it and I did. It took me maybe an hour to get through the pitta bread granted but I plucked up the courage to do it. I put my fears aside and just nibbled at it whilst chatting away trying to keep my mind completely away from pain or fear or anything. Okay, so I did get pain - a sharp one at that. Luckily we were still seated for another hour I think after eating so I didn't have to attempt to move straight away and could grit my teeth through the pain. It did settle down quicker than it normally does so I did get to show my moves on the dance floor later on and pose for the photographer in his little photo shoot set up. Although I still had the pain, it was a HUGE achievement to even pluck up the courage to eat and not just to eat but eat outside of my house in front of other people not knowing what the consequences would be. Granted, I haven't eaten since but it was a big step in the right direction. That's what I have to hold on to… So take that Gastroparesis!! 

I have found recently that candles really help to calm me down and keep me relaxed. I've been loving putting lighting one when I'm getting ready to go to bed or watching videos or TV or anything really. Sleep is really important for your body and if you're like me and struggle to sleep, I've found that relaxing my body and mind before I go to sleep helps me fall asleep if nothing else. Obviously I don't leave it going all night, but it helps with that initial part of falling asleep!! Every little helps eh? Who says that? Tesco? No, Asda? Wait, no it is Tesco. Ahh - either way it does… sleep can make a big difference. I've been loving the Bath & Body Works candles that I got from amazon and also one of the Glade candles :) I even found one that smells just like when you walk into a bakery and one that smells like when you walk into Abercrombie….. HEAVEN :D

Hello Aberombieeeeeee 

Cookie Addicts HEAVEN!! 

SO CALMING and yummy

So, as I'm sitting here with my dog on one side and my feed set up and running on the other feeling like absolute POOP (my parents read this sometimes - no swearing LOL), I have written this post and actually, I feel like I've let it out. This is honestly like a release for me and to know that it helps other by me sharing my journey makes me feel great. I follow other peoples journeys and they help me so to know that I'm doing the same keeps me going.

Cheap & Cheerful yet so so calming!

I think that is going to be all for today as I don't want to hurt your eyes from staring at the screen to long but please remember you are NOT alone. You have me… who else do you need…. DUH :P 

My question for today is: What is the one thing you have always wanted and dreamed of doing that you think is out of your reach?

Stay Strong

<3

Hypnotheropy & Specialists Galore - Gastroparesis Update

Hey Hey Hey You Wonderful People,

How are you doing? 

So, I thought I'd do you a little update. When I say little, I mean quite a bigger so grab a cuppa or a duvet if you can't have the cuppa and get reading :) 

Since the New Year, I have had a crazy total of 4 appointments in 3 weeks. Not bad going!! Hospitals are my second home but I must be grateful, some people don't even have one. So, let us go through all the appointments one by one to see my past 3 weeks of Gastroparesis. 

I have had 3 hypnotherapy sessions now and honestly, I can't say all that much. It has taught me how to breathe properly because I apparently haven't been and it doesn't help anxiety attacks as my breathing is bad to start with. My last session I had was EMOTIONAL to the max. I was in tears for, well….. most the session. I just got so teary talking about the pain I've got and been dealing with and eating and all that scary jazz. I've decided to have one last session next week to end things badly and get some last techniques. Unfortunately, at £240 a pop, I can't just keep going unless I'm seeing results. Im still not eating and I'm still in pain and been very shaky, anxious and on edge recently. We shall see what that session brings.

My love -
A Tall Soya Toffee Nut Chocolate Cream Frappuccino
With Caramel Drizzle = Pure tastiness and happiness :) 

I have been managing a little more liquid by mouth. Although, we don't know if it was the hypnotherapy or the medication that did that but my guess is the medication if i'm honest. It feels good though because I've stopped off in a Starbucks a couple times with my dad or grandpa in-between or after appointments. Feels like I'm part normal again. I may drink it at snail pace to keep the pain levels minimal, but I'm having a drink and not ending up on the floor in tears. It gives me a little bit of hope that may, just maybe… food could be next. I just need to pluck up the courage to try and eat because every time I think 'yeah, I'm gonna try eat today', I'll go to eat or think about going down to my parents and say I want to try and eat, the anxiety kicks in and the idea fades away and does not happen. Let's keep out fingers crossed!! 

Next up is my pain specialist appointment. Nothing too dramatic happened in all honesty. He has upped my dose of the Lyrica/Pregabalin medication. I am now at a dose where he would expect to see some sort of change. Fingers crossed!!! 

My specialist…. well, he went over everything that has happened in the last however many weeks it has been since I got my tube as I hadn't seen him. He's happy with how the feeding is going and it is definitely helping me put on weight. YAY!! Maybe I'll be able to fit into my clothes properly soon :). Tube wise, we have been told very different stories when it comes to NJ tube changes. Some people say to change it to the other nostril every few months, some say you can keep it for as long as it's not rotting or split or blocked and others say they have never changed nostril. Confused much!! At the beginning of the appointment, he told me that in 6-8 weeks he would look at what to do now as the NJ tube was never long term and was to strengthen and fatten me up basically. He said in 6-8 weeks either we want me to be managing to eat enough to keep my weight up or think about other types of tubes such as the PEGJ I had last time or a JEJ. They both go through your stomach wall and so are also hidden by your clothes. However, as I learnt last time, they also come with many other issues such as skin granulation and many infections. 

PEGJ Tube that I had last time. It is a lot more invasion (and painful)
than NJ tubes as it goes through the skin.
I have a second belly button now HEHE (bet you can't say that) 

I think he thought I didn't like it appearance wise or something because as soon as I said that I quite like my tube and have had no problems with it but instead people have been amazing with it even at work be it customers or other staff. As soon as I said that he told us to forget the 6-8 weeks and to go to him when I was ready to and knew what I wanted to do next. However, still working around a 6-8 week mark to then put a more long term plan into place. In all honesty, I am happy with the NJ Tube, sure, it sometimes hurts my throat and rubs a little on my nose and hangs but I'm getting more used to it and finding ways that helps such as wrapping the tube (gently and not bending or damaging) up around my hair if my hair is up. I forget half the time that the tube is there and quite happy to get on with my life and youtube videos as you'd see if you watch them. 

Talking of youtube, I have been getting on with it as per usual all be it not regularly once a week like I started out doing. But, as often as my body lets me :) I love it. It's such a release of performing energy and I really enjoy doing them and watching them. I've also made it over 100 subscribers which is freaking AMAZING and I am so grateful and never thought over 100 people would care or want to watch me being an absolute donut with a camera. If you have some spare time, maybe you could go check my channel out? It could change your life if you CLICK HERE! 

Well, I think that just about covers everything for now!! 

My question for you all today is: What is your favourite drink from Starbucks?

Speak to y'all soon

Stay Strong

<3

HAPPY NEW YEAR - Here's to beating Gastroparesis' Butt

Wellllll Helloooo there 

HAPPY NEW YEAR!!!

I want to start off by saying that I hope you all had an amazing Christmas and New Year!!

Before I get into my little update for you all, I want you to raise a glass or medication bottle perhaps and repeat this sentence… 

"I just let Sophie tell me what to do because I'm a blog reading banana pie" HAHA I'm just kidding, but seriously say this one 

"Here's to a happy and healthier new year where together we will beat Gastroparesis' Butt and many other illness and obstacles"

*CLINK* - That's the sound of our glasses/medication bottles touching :D

Okidoki, so now for what you probably click on this post for… an update! 

There isn't too much to update since my last post in all honesty. I am super happy with my feeding tube and have become a lot more used to it. I barely feel it and remember it's there for the most part. Although, for some reason, it's always super uncomfortable if I turn my head right round to the left. Weird. 

NOT MY HAND …. NOT GUNNA LIE
I DIDN'T HAVE THE ENERGY TO
GO TAKE A PICTURE MYSELF :P
FORGIVE ME?

Nippy (my tube) and I are good friends and getting along great. I've been put on a medication to try called Pregabalin/Lyrica which is an anti-epileptic one. I was started on a very small dose as we all know what my body is like tolerating new medication. All was A-Ok and I had no side affects. After 5 days of taking it, I was told to double the dose. So, that's what I did. Unfortunately it ended up that the 5 day mark landed on Christmas Day when we had about 17 people in our house. It didn't make me feel more ill or in pain… oh no… it just made me so very sleepy that I ended up going to bed and falling asleep around 7/8pm on Christmas Day and was out for the count until the following morning.

HAPPY CHAPPY :D
GOT SOME FUNKY FACE
JEWELLERY 

Atleast I wasn't throwing up or feeling dizzy or anything like that like some of the other medication side affects I've had but for a good few days it took away all the energy I did manage to get through having my tube feed and left me feeling like I hadn't slept for years and not eaten on top of that. I'd fall asleep at like 7pm every night for the next few days. Now, I don't feel as tired but still not as much energy as I had first got with the feed. Kinda sucks to be honest but the pain levels haven't been as bad recently. Granted, I have't taken anything by mouth other than a few sips of Guava juice and some hard boiled sweets, but my day to day pain has been much better. I'm pretty nervous to try and eat something proper as I'm scared the pain will come back, so I keep putting it off. We will also probably slowly keep increasing the medication dose 'till I'm at a big girl dose. I'm also pretty content with the tube right now HAHA!! Quite like having the security and the pressure it takes off… couldn't imagine getting rid of the tube right now if I'm totally honest. And hey, who wouldn't want some extra funky face jewellery… can't buy this baby in the christmas sales!! HAHA

I'm still working and doing plenty of online shopping like normal. I have however, got my makeup a bit more organised in some proper storage units so that's exciting… right? 

I'm uploading a video every so often when my energy levels allow me to film and edit something but I do really want to try get them more regular again at some point. I've decided that this is my year. I have a few pretty darn poopey ones and it's about time I have a good one. I want to achieve things and learn things and experience things I haven't so far! I'm going to start living for me and show Gastroparesis who's boss. 

'I have Gastroparesis, Gastroparesis doesn't have me'

Whether I end up having a feeding tube for another 3 months or 3 years….. it is my life and it's not going to stop me achieving and experiencing things I want to do :D FIGHTING SPIRIT TALK!! 

I also plan to do some Tubey videos and as well as some more general Gastroparesis related youtube videos to raise awareness… just got to figure out what!! Unfortunately my lil old brain (and body for that matter) doesn't work that fast :P 

Well that's all for now

Question of the post: Do you have any New Years resolutions and if so what are they? … comment below or tweet me by clicking HERE :)

Stay Strong

<3

Nasojejunal Feeding Tube, 3 times the Sedation & Dressing Up The Dog - Gastroparesis Update PART 2

Well hellloooooo there again … Long time no speak :P 

I'm gonna jump right on in. So, following my hospital trips, I had an appointment with my specialist the Wednesday of the next week. He took me in alone this time without my parents and asked me exactly what had been going on and what I wanted to do from here. I told him everything and said that I was feeling so much pressure and once he found out I wasn't even taking my medication because I couldn't he said that a feeding tube was where we were going to go. He didn't want to do the PEGJ tube that I had last year because now that I have the pacemaker, it would be too risky to do as it is more invasive and could end up damaging the pacer wires - the last thing we want to do right now! So, the way forward was having a Nasojejunal Feeding Tube. I've had this type of tube once… and lasted a record time of 5 days. This time however, I'd done my research and had spoken to friends with Gastroparesis and feeding tubes, so I was a lot more aware of what having a tube felt like and involved and such. Last time, I had great difficulty getting on with the feeling at the back of my throat so asked for a kiddy tube :) always knew I was a kid at heart HAHA. For those of you who don't know what an NJ (nasojejunal) Feeding tube is, I shall explain. So, the tube goes up your nose, down the back of you throat, through you tummy and ends up in your small bowel/intestine (otherwise known as the Jejunum) which is where your food usually ends up once your stomach digests it. This is where nutrients and stuff actually gets absorbed into your body. 

This is what it looks like :D My Tube is Called
NIPPY THE TUBE

Casually Taking A Selfie During A Lunch Break
What? I can't eat during it - gotta keep
myself occupied some how :D 

Right, so we agreed on a tube being done and also he suggested trying a course of Hypnotherapy - which of course, comes with a hefty bill. The hope is the hypnotherapy will either help my symptoms of pain and nausea by retraining my brain OR if not that, then hopefully retrain my brain to accept medication. For whatever reason, be it genetically or my brain being a complete numpty, my body is not accepting or responding to medication. Hopefully it'll do one of the two and allow me to be able to eat by mouth and enough of it to take the tube out. The tube is there to give us more time and take a

weight off my shoulders whilst giving my body what it needs and stop it going into shut down like it was doing. 2 days after my appointment with him, I had a call saying my date to get the tube done was on Wednesday. YES 5 days after and 1 week after deciding to have it done. It was certainly all systems go. So, what's the first thing I prepare….. SURGEON TED!! DUHHH - For those of you who don't know or don't remember, my teddy I've had since I was born has a surgeon outfit from when I had my pacemaker fitted back in 2012. So, I whacked out the outfit and popped it right back on him again. On this occasion, he wasn't performing the procedure. He was over seeing one of his students (the Dr. who did my tubes last time) and teaching HAHA - oh gosh…. I'll never grow up :D

Good Old Ted Ready To Go

Anyway, November 27th came and off we went to the hospital to get the tube put in. The nurse who did all the paperwork and checked my allergies and all that was a tad bit…. special lets say. She asked when the last time I ate was (baring in mind you usually have to fast before an endoscopy which is how it is put in). When I told her that I wasn't sure and was about 2/3 months now she said ''yeah, but when was the last time you ate?'' - So, i politely replied ''about 2/3 months ago as I can't eat by mouth hence why I am getting the feeding tube''. My mum and dad are sitting in the bit just outside the cubical and are wetting themselves by this point. She then replied to me by saying ''oh, really, you eat nothing by mouth? But, when did you last eat - I have to put it on the form'' - This went round in a circle for about maybe 5-10 minutes… AND I'M NOT EVEN KIDDING YOU. I was fighting back the laughter attempting to come out. Once she left the room, we all just burst out laughing and I even had tears from laughing so much …. I did make sure she and the Doctor were both FULLY aware that under no circumstances did I want to be awake for the procedure. Not after my last endoscopy and this would have been 10times worse. So, in order to make sure that I wasn't awake, the Dr gave me 2 different types of sedation and gave me 3 times the amount he would have usually. I think it's pretty safe to say, I was COMPLETELY out of it - for the procedure itself and for the rest of the evening HAHA…. I slept GREAT though :D!! 

My pump and feed and all the stuff that goes with it arrived on the Friday from Abbot (the company who supply everything you need when tube feeding). You always know you have a chronic illness when you are actually excited to see what the feeding pump looks like as it's a new, all improved one from the last time HEHE!! I was like a kid on Christmas Day when I opened it. It is the cutest pump, so easy to use and set up and comes with a rucksack as it is a portable pump. The rucksack has a choice of 3 colours - blue,red and black. I went with black… goes with everything :) It even has it's own little stand so the back can stand on its own. Pretty cool if you ask me… but then that might be the mind of someone who gets excited by this kind of thing. Here are some pictures of the bag and the pump all set up with my feed going :) 

My Snazzy Friend

The Snazzy Rucksack
Taking ''ON THE GO FOOD'' to a whole new level!

It's great. I love it. It's so quick and easy to set up each day which makes it all feel so much less like a pain to do (especially when you need to disconnect it at 5 in the morning to go to work HAHA) 

You always start the rate that the feed goes through slowly and build it up as your body gets used to it. I started out doing 20ml/hr and raised it 10ml/hr each night. 50ml/hr seems to be the best so far where I don't feel sick or in pain. I tried 60ml/hr and ended up feeling sick and getting cramps in my stomach, so I've put it back down and keeping it at that for the time being. Unfortunately, the lower the speed the more hours you need it on for so that you can get enough of it. It is a 1000ml bottle and the community dietician that came to my house (same one as last time) recommends I have between 750ml-1000ml a day to get my weight back up and stable. Well, if you do the maths, to get the whole 1000ml in at a rate of 50ml/hr would mean having the feed on for 20 hours of a day. Not so practically if you are still working like I am (of course)! So…. we are trying to figure out a way round this… maybe I will have to do it for 15-20 hours a day and speak to managers and see if that would be ok having it in its cute snazzy backpack. It is plain black so technically it would match my uniform if that counts? HAHAHA

I'm not going to lie. After I had the tube put in… My throat was SORE!! It was hard and painful to swallow especially being that I have a swallowing problem as it is. My nose hurt from the tube rubbing (and still does on the side of it) and I could barely turn my head without it hurting too. I was pretty much downing Strepsils and any form of throat sweet and spray. They didn't do all that much but it did get easier as the days went on. Now, 2 weeks on, I can barely feel it at the back of my throat unless I turn my head to the left for some reason. It's still rubbing on the side of my nose which isn't great but together with my mum we are working out the best ways to tape the tube to my face that is both comfortable for my throat and face and that also holds. Its taken a while, but we're getting there. It's a work in progress. But hey! I've beaten my previous time of 5 days and feeling much less achey and definitely have more energy. I'm back taking my medication again so the nausea is also much better once I take it. I have overcome the fear of going out into the 'real world' outside of the hospital with the tube which I never had to do last time. It honestly wasn't as bad as I thought it would be. A couple people stared but nothing too horrendous and customers (and work) have been so amazingly supportive and it has given me a chance to spread even more awareness about my condition when people ask what it's for. Particularly some of our regular customers who had no idea as I've never gone round telling everyone at work - I just got on with it and always had a smile on my face. I think I've definitely gained more respect from some of them… Not always a bad thing :D Myself and a fellow Gastroparesis friend have named our Tubes/Hickman lines for the funsies as many people do who have tubes and feeding support and such. So…. Say hello to NIPPY THE NJ TUBE :D hahahaha

I have my first Hypnotherapy appointment in Harley Street, London on the 20th of this month. 5 days before Christmas up in London…. Yep! That should be fun. So fingers crossed that goes well and the lady thinks it'll be beneficial to me. 

Well I think that covers just about everything for now. So, I shall leave you in the festive spirit as we have got only 2 weeks to go now until Christmas. We gave the dog a small make over…. Doggy Christmas Style :D 

HO HO HO MERRY WOOFMAS

This dog is CRACKERS - get it? crackers? it was from a cracker? HAHA ok - I'll stop

Question For the Post: Have you ever seen someone with a feeding tube and made a comment/ Have you had a feeding tube and what was your experience with it? Comment below :) 

AND REMEMBER

STAY STRONG

<3

Sore Vagina, Horrendous Drs & Hospital Stays - Gastroparesis Update PART 1

Helllooooooooo

How you all doing? Getting into the festive spirit?

I'm apologizing in advanced. It's quite a LONG post so it's a two-parter so watch out for the 2nd to follow. Making up for lost time!

Sorry it has been quite a while since I last posted. My health took quite a turn unfortunately and has landed me with a feeding tube once again. Okidoki, lets take it back to the start. For those of you who have read my previous posts, you'll know I tried the laser accupuncture. Unfortunately, it did poop besides make a rather large hole in my purse. That kinda sucks… Following on from that, things really did not improve. Pain was becoming worse and worse and my liquid intake came to a standstill. Even taking my daily medication stopped because taking them was making me feel so sick and in pain. NOT COOL!! My pain specialist gave me some Oromorph (type of morphine) to try and give me a 'rest period' and hopefully manage to get some food down me to keep my body going. Did it work? HAHAHAHA course it didn't. Would we really expect anything else in fairness haha. It made me a tad sleepy especially alongside another medication he gave me. However, it started giving me nightmares and after 20 minutes of taking it, I'd be in tears. It made me all emotional which is a side affect of the medication along with the nightmares. So, surprise surprise… another medication I had to stop and had no success. What happened next I hear you scream? Well, maybe not scream but you might be thinking it. I had a very rough weekend (just over month ago now) and was completely and utterly EXHAUSTED. I don't think that word even describes how tired I was both emotionally and physically. On the Monday morning, my parents decided enough was enough and decided to take me into A&E. It was the first time I've ever called in sick to work due to my Gastroparesis. Kinda felt like I'd really gone back to square one and had let myself down. Anyway, back to the point. I had my bloods and blood pressure taken and was told I was pretty dehydrated. 

To be fair, I could have told them that without going through all the needles and that jazz but hey ho. I was given 2 bags of fluid through a cannula and got to go home later that night. It didn't particularly make me feel hugely better but restored some much needed fluids. This was just the start of the week from hell though. Tuesday I went back into work for about 2 hours and then went home early as I just wasn't feeling well. For me to turn around and say that I don't feel well enough to stay at work … well…. that says it all. I usually bring out my stubborn side and push through it. Wednesday I had an appointment with my pain specialist again first thing in the morning. Everything got very emotional and it ended with me, my mum, my dad, my pain specialist and his secretary all in tears. Yep…. like I say… if you're gonna do it… do it properly ;) It also ended with him sending me back to the A&E department to be admitted and to have an Ultra Sound and an Endoscopy. He wanted to check that there were no other problems that we would be covering up with medication. Both tests came back clear aside from the endoscopy showing excessive bile in my stomach. This literally had to be the worse experience I had from start to finish. I saw the WORST Gastro Doctor. He was awful. So rude and useless. He walked off for about 3 hours with all my notes which meant the nurses couldn't give me any of my anti-sickness medicine or anything. Even they put a complaint in as he lied and everything. I ended up shouting at him to go away and that I never wanted to see or speak to him again.. WOOPS - but hey! He deserved it! 

I may or may not have shouted at a fellow patient too. I had a panic attack/mental breakdown whilst I was in there and when you have one of them… you don't control what you do or say and she told me to be quiet because there are sick people in there and I told her to shut up. DOUBLE WOOPS. 

Then, when I had the endoscopy, for some unknown reason the sedation did NOT work. It didn't even make me feel sleepy or not with it. I was totally and completely aware of what was going on and felt everything. It was the WORST experience of my life being awake for that. My gag refluxes are pretty darn sensitive so sticking a camera down my throat whilst I'm awake was just a drama and a half. I kept gagging it back up and they'd put it back down and we'd keep going round in this circle until they topped up the sedation and it made me a little sleepy but enough for them to be able to get it down and staying down. It really hurt my throat for the next like week which also sucked.

Funny story though, the old woman opposite me had a sore vagina and she wasn't afraid to tell the world. So basically, my mum stayed the night in the hospital with me in a chair… which may I add was so so nice of her. WORLDS BEST MUM RIGHT THERE!! I get very anxious in hospitals at the best of times, so she stayed partly to keep me calm and partly because I would have walked out otherwise as I was getting so stress and really didn't want to be there. Anyway, back to the point again, when we were trying to sleep… this woman every 10 minutes would suddenly shout out… '' HELP ME, I HAVE A PAIN IN MY VAGINA''. LITERALLY EVERY 10 MINUTES! It's hilarious now and makes for a great story to make people laugh but at the time, after like 50 times it's a bit like… yeh okay we know, you have a sore vaj and you want some help… She apparently didn't know what she was saying so it's not her fault but still.. when you're trying to sleep… not the best. But, I had about 3 or 4 bags of fluids over the course of the 2 day stay which definitely gave me a bit more energy. Whilst I was having a break down, I decided that I wanted a feeding tube. I couldn't do it anymore. The pressure of having to try and eat to give my body what it needs and all that was too much along with feeling so bad health wise. 

I don't want to make this post too long… so I will continue the rest in another blog post that I shall go and write … well straight after I post this :D 

I hope you are all well and I will speak to you again in a few minutes :) I'll post it straight after I write it… I just didn't want to bore you with one hugeeeeeeeeeeee post - see… being thoughtful HAHA!!

Question For The Post: What's your worst or funniest experience during a hospital stay?

Stay Strong

<3