Dips, Dives & Deaths | Gastroparesis

Helllooooo guys,

I am sorry that I have once again left it a while. So much has happened, unfortunately, primarily bad.

Last time I updated you all, I had just come back from holiday and was a day or so into my new job. The new job has been going really well. Now that I am taking all the information in rather than having it make my head spin that is anyway. I get on well with everyone else on the reception and am managing to guard the phones, answer the emails and check people in and out all at the same time... who'd have thunk it. It has been such a nice change to making people coffee all day everyday after 4 years. Fingers crossed it all stays that way :). 

Just after I came back from America, I was given another medication to once again, add on and see how it goes. As usual, I was started on such a low dose it couldn't really even be classed as a dose. All was ok for the first 5-7 days with no side effects good or bad. The dose was doubled and so were the problems. True to my normal body reactions, me and the new medication which was called Levetiracetam, did not get on and reacted badly to one another. Be it to another medication I am on or the medication itself, we do not know. Either way... it's another one down. It was messing with my mind and my body increasing the pain. Fear not, I have stopped it and won't be going back on it any time soon. I have however had enough of trying medication after medication and being stuck in this same cycle over and over of being thrown a new medication to stick down my body and pray for results. Often, being disappointed yet again along with suffering the consequences and side effects. NOT COOL!! I don't really know what the other options are to be honest but my feelings will be made very clear to my pain specialist when I next see him. How long am I seriously expected to just keep trying medication after medication in the hope that the next one is the one to work? How long am I expected to just suffer the side effects and end up worse? How long could you do it for? It's making me feel so down being in this cycle with no-one able to help and do anything about it besides sit there and tell you "It will get easier". Will it though? Will it really? I'm so fed up and just feel like completely giving up. How many times should I just sit there and pray someone comes across some amazing new thing that is going to cure or help me and many other Gastroparesis sufferers? It's easy for you to say "it will get better" or "you never know what doctors will find''... it's a whole other game to be the one to have to listen to it and just accept it. 

People are dying every day due to conditions, and unfortunately, this one included. So many people who were fighting Gastroparesis have lost their lives this year already. One of my good friends lost her battle yesterday. She was similar age to me and such an amazing, strong & brave young woman. Way too young to lose her life but yet she did. It is SOO scary but it is true and real and happening! There is such little research being done on Gastroparesis because it is not as known as cancer may be, but it doesn't make it any less fatal. They both can lead to the same ending! Yet, why is it, people are more understanding or willing to spend money to research into someone who has cancer. I have nothing but the up most respect for those suffering or who have suffered from cancer along with their friends & families. I know what it is like as 4 years ago my Grandma died from cancer. So many people with Gastroparesis are either ignored by professionals or denied treatment because it is simply to expensive or there isn't any due to lack or research. What about any of that is fair or anywhere near acceptable? I know there are thousands of other health conditions that don't have the research done for them too but right now, all I can focus on is the one that is basically killing me. Lets face it, without my tube.... I would certainly be in hospital close to dead if not already by now. It's horrible to say but it's the truth. I can't keep going round and round like this for 30/40/50 years.... would you?

Just before I go for today, I want to say R.I.P to my friend and fellow Gastroparesis sufferer Lucy Hanson. You will never be forgotten and hugely missed. My thoughts and prayers are with her family at this hard time. She was an amazing, brave young lady who is loved by many!! Another person to have received their wings far to young <3

Have a good day everyone. 

Stay Strong

<3

I'm Delighted To Invite You…

Hey Hey Hey

How are you all?

I know I am a little over due a new update and have got lots of stuff to update you with, but, before I do a post on all that, I wanted to share something with you all that could change your life.. maybe even the world :) 

Something for everyone and everything

We all at some point in our lives have parties, events and occasions that require invites, thank you cards, maybe even some place cards so we can keep the family members apart who we know are bound to cause a fuss if they're next to one another. Maybe it was a birthday card or New Baby card you were after or did you just want to say thank you to someone with a one of a kind card. Special occasions are ones that we are going to remember for the rest of our lives, so every detail counts AND gets noticed. You want it to be your invites or cards or function table stationary that everyone can't stop talking about! I'm sure you'll agree that everything we want all costs a ton of money and that's why it is so important to find amazing things that will stand out and be memorable for good prices and that is what I want to share with you. 

Without invitations, there would be no guests. Without guests, there would be no party to celebrate the special occasion. I know from past celebrations in my life that having the most unique invitation that everyone keeps asking where you got it because they absolutely love it is so super duper important. It'll be the first thing to catch your eye and the last thing your eye will capture of your occasion. That is where the amazing company 'Delighted To Invite' come in. Now, I might be biased (though I don't believe I am on this occasion) being that it is my mums company, but I would never lie (lying is bad kids). I see her working so hard all day everyday until the late hours of the night, making sure that family after family get the invitations of their dreams with all the matching bits and bobs that go with it. What makes her invitations, thank you cards, table plans table names and everything you could possibly think of so special, is that they are handmade and stunning that just blow you away. The are so unique and personal that you instantly fall in love with them. Everyday she is coming up with new designs be it from her own mind or a clients imagination and dreams. It is always something that will blow your mind. No matter what the occasion and what the theme…. some amazing magic will happen. TRUST ME! You get that magical feeling you get when you go to Disney World! Amazing right?

I want to share with you some of the amazing designs and products she creates to help make other peoples occasions have that extra special wow that their friends comment on and love just as much (if not more but shh don't tell the host) as the food or dresses or hall. Not only that but she does it for amazing affordable prices that really makes a difference!!

This was an actual invite…. a 3D box filled with M&M's
for a candy themed party…. AMAZING!!!

Want a different shape card to really blow your
friends & families mind? You said you wanted it
to be some unique and special!

Avoid the arguments and place everyone
in a seat with unique place cards perhaps

Normal invites are losers…. have an invite
that screams you by having a letter… now thats different!!

She is a home run business who's building up year after year, developing new designs and techniques (with the help of her lil helpers - the kids). She gets so much amazing feedback and clients sharing her name to all their friends who can't wait to get their own amazing handcrafted celebration items. All it takes is one person to keep sharing her name and it builds her up higher and higher. She is in a world where it is word by mouth so we all have to use our voices and share the talent! I want to see her achieve her dreams and build her business up to places she could never have imagined of. This is why I wanted to write this post. It may be cheesy because she's my mum, but her work…. it speaks for itself and quite honestly deserves more than a blog post by me. So…. should you or anyone you know now or in the future, ever need invitations or well… anything you need for your celebration…. PLEASE (with a cherry on the top) click on this WEBSITE and get in contact with her. She literally can make any invite from shapes to well…. everything's a shape …that's a little awkward!! You understand me though! 

She is constantly uploading some of her newest and coolest designs on her INSTAGRAM , so be sure to head over there to and see some awesome things #delightedtoinvite 

Need to thank someone in a way shop cards just
dont do…..#delightedtoinvite

Turn everyones eye from the new baby to your amazing
New Baby card?

An event she did to show off some of her work!
There's loads and loads to choose from or even get ideas from!! 

Lets spread her talent and make some amazing things. Visit her website for all her contact details and make an enquiry. WOW your friends and have the best in the business - all from your home and our good old trusted friend the internet! 

www.delightedtoinvite.co.uk

You know you want the best…. and if you can get the best in a way that doesn't hurt your pocket and means you can get that more expensive dress or pair of shoes…. then what on earth are you waiting for?! Lets get designing and creating together and let her and her talent make you products you are so extremely happy with! 

Happy Celebrations

Stay Strong

<3

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