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

Laser Acupuncture - Gastroparesis Update

Heyy Heyy Heyy

<3

How are you all? It's been a little while since I last posted. Do you forgive me??

Well, since we last spoke I have had the first session of the laser acupuncture. Unfortunately, it can take 3/4 times of doing it before you truly know whether it is going to work for me. Which, at £100 a time - quite frankly sucks!! But hey, at this stage I will try and pay just about anything! 

Never heard of laser acupuncture? Me neither until I was told to give it a try! You don't feel a thing at all. It was on a low dose the first time for about 30minutes. This treatment is fairly new in the UK and was first done in Canada. It's hard to explain what it looked like so I've found some pictures to show you as best I can because... well I just didn't think to take pictures there at the time HAHA It was at 8:15 in the morning and I DO NOT do mornings well. Not a morning person to say the least.

 

It's kind of like a belt pack buckle or something. I don't quite know where I was going with that appalling description but you know. All of us (my parents were with me) had to wear special protective googles which were super sexy to protect our eyes. The laser isn't harmful on the cells or body for the most part but they can be for your eyes. The idea of the laser is that they help the cells grow and repair. It initially helps reduce pain and in the long run if you keep having the treatment it can potentially help repair nerves/muscles. As per normal though, Gastroparesis is well.... let's just say difficult so we have no idea whether it will help at all or do nothing like everything else has so far. The Specialist doing it did say that it could make you worse for a day or two after or give relief or do nothing. He was hopeful for any difference be it good or bad because it would show it was having some impact. Sometimes things get worse before they get better and in this instance it could be the same kind of idea. Nothing really happened the day I had it to be honest aside from getting the hiccups a LOT. Literally about 12 times in that one day. The day after, I still had the hiccups more frequently than I normally would but not as much as the day before. Yesterday (I had the laser acupuncture on Thursday) I had a really rough day with pain. I don't know if this is all just coincidence or related especially as he said if it got worse it would be the same day or maybe the one after. Who knows. Apparently no-one when it comes to this stupid, horrible, painful, frustrating, life changing, scary condition. And that's just getting started. I'm so fed up right now of the pain and what my life has come to because of it. Things that I loved doing, I just don't have the energy to do and therefore don't even want to do them anymore. Been quite emotional lately about everything if I'm honest. If this doesn't work.... I just, I don't know ...

I have another appointment to have another session of it done again on Thursday 31st October, so I guess we shall see if that shows any signs of helping or not. The specialist really didn't say whether he though it'd help or not. He didn't want to promise or say anything and then it not happen because he just doesn't know. Due to the fact it is a condition where such little is known about it, we have no freaking idea whether it'll help. Even just a little bit where the edge is taken off would be a huge thing right now. Just something.... anything!! It is only a few days away now from being 1 year since I got the pacemaker and to be quite honest, I don't really feel any better since having it pain wise especially. Nausea wise, it's okay-ish now that it's back on the higher setting alongside with my mediation. If I skip an anti-sickness tablet... BOY DO I KNOW ABOUT IT!!

BLAHHHHHHHHHHHH - that is how I feel right now. Everything just seems like such an effort to do because I have no energy. Work takes all the energy I do have leaving me none to have a life. Even making youtube videos now.... Sitting down talking to a camera and then editing it on my laptop doesn't sound like hard work or energetic, but apparently it is. Lying in bed just watching something is much easier. I've just gotten through an entire season of a programme called "Twisted" in about 2 or 3 days I think it was. On the plus, I really really like the show - so I'm kind of glad I came across that one and decided to give it a watch HAHA. If you have any good shows, please be sure to let me know HAHA!! 

Well, that's all for now. 

Question for the post - What are you dressing up as for Halloween this year? (For those of you who are dressing up of course)

Speak to you all soon

Stay Strong

<3

BEAUTY POST: Get Ready With Me : Skin Care

Heyyyy There Guys

I thought I'd give my first beauty/youtube kind of related post a shot at long last. And I have the perfect thing to start with. Following on from my 'Get Ready With Me' video I posted last week and a brand new one that has been posted today following on from last weeks, I thought it would be a cool idea to share my skin care products with you in a little more detail with prices and my thoughts on them. So, shall we hop on in? 

Where do I start.... hmmm let's start from the beginning - usually a good place to start eh?

Starting with removing my make up so thinking about it that's actually kind of backwards but when have I ever done things the normal way in all fairness. 

£4.99 from Boots

As I wear waterproof mascara and eyeliner as my everyday eye makeup, I found wipes were just to rough. I have super sensitive eyes so I was very wary of trying a liquid remover. However, the L'Oreal Paris Absolute Eye & Lip Makeup Remover is just fantastic. It takes off all eye makeup including waterproof products in just a few gentle sweeps across the eye on a cotton pad. Costing at around £4.99 from places such as boots, it is the perfect product that is so easy to get hold of at an affordable price. It is now a must have product for me.

£3.25 from Boots

After that I like to get that skin makeup off. I used to be awful at taking makeup off and night. I was so lazy but now I can't go to bed with it on. My skin thanks me for it. I love using the Simple Cleansing Facial Wipes. I find them so refreshing and my skin really gets on well with them. They have so much goodness in them so I am all for them.  They are usually at the price mark of around £3.25 however I love to stock up on them when they have the two for £4 offers. Way cheaper - means more makeup for me :P

£4.99 from Boots

To ensure I get all that makeup off my face, I follow up with the L'Oreal Paris Skin Perfecting Purifying Miscellar Solution. What a mouthful that was HAHA. This is well known in the beauty blogging world as a great dupe for the beloved Bioderma but at a much more affordable price as well as much easier to get hold of here in the UK. Priced at £4.99 I can honestly say you are onto a winner and it helps keep my skin so clear and clean. It's always so refreshing as is gentle enough to sweep over your eyes. And boy does that feel good first thing in the morning :). 

£3.50 from Boots

I usually use this product whilst I am in the shower as I just don't like the feeling of splashing water all over my face in the morning or evening. I don't know why - I'm weird... I know. This for me is an old classic staple product for me. I have been using this for years and still absolutely love it and so does my skin. My skin can be quite oily at times but as this is an oil free product it helps control the oil without adding more into the equation. The Clean&Clear Deep Action Cream Cleanser is priced at £3.50 in places such as Boots or Superdrug. It comes out as thick cream and spreads so nicely whilst giving a cooling affect on you face whilst it's on and doesn't dry your skin out. It's very gentle as well so doesn't cause redness on my skin after. Another bonus in my books. 

£16.50-£25 from Boots

This is another product that I have used for years now. It is part of the Clinique 3 Step Facial Routine. I do have the Cleanser, Toner & Moisturiser but I'm not a huge fan of the daily cleanser if I'm honest. I don't feel like it really cleans my face. I like the moisturiser and tend to go back and forth to it every so often. The Clinique Toner In Number 3 For Oily Skin however, is my absolute favourite. I haven't found a product I like as much and that actually seems to work. It's not the cheapest product on the market and is priced between £16.50 to £25 depending on the size you have. I couldn't imagine not having it in my daily routine so thankfully each bottle does last a while as you don't use that much product in one go. 

 Hey, every girl deserves at least one higher end product... right? Who's with me? 

£5.95 from Superdrug

 The last step in my skin care routine for both morning and night is the Palmers Cocoa Butter Daily Calming Facial Lotion. This is a fairly new find for me but I absolutely fell in love with it from the very first time using it. There was such a noticeable difference from only one use. My skin is very sensitive and often can get quite red after taking makeup off or just through the day but this has literally been a life saver. You only need a pea size amount as it spreads extremely well, so the £5.95 bottle from Superdrug lasts for what seems like an eternity - which I am NOT complaining about. Not only does it take down the redness but it seems to help even out the skin tone as well as moisturise your skin and I'm pretty sure it helps keep my skin clear as well, even though it doesn't say it does that. So, if i was to describe this product in 4 words, I would say that it is a GENIE IN A BOTTLE. It grants all my skin care wishes. I honestly can't rave about this product enough. The difference it has made to my skin since using it is unbelievable. Who said high end products were always the way forward?

I use the L'Oreal Paris Miscellar Solution, Clinique Toner and the Palmers Cocoa Butter Daily Calming Facial Lotion twice a day. I use them when I first wake up before applying any makeup or even if I am having a makeup free day and then use them in the evening after taking makeup off or before bed. I am so in love with this skin care routine and it is truly the first one that has actually kept my skin nice and clear even during that girly time of the month. I have the odd break out here and there which is to be expect partly due to my health and partly because.... it's just life unfortunately. 

Be sure to check out both videos (by clicking here) that show you how I apply and use these products as well as my general routine such as hair, makeup, bath and clothes. Be sure to comment on the videos saying my blog sent you and it'll be like some super duper bloggers connection thing that we will have going on. Okay, I have no idea what I just said but that is ok by me. 

That is all for today. I hope you found this useful and be sure to let me know what you think of these products if you've tried them or if you do try them. I'd love to know your thoughts on them.

Until next time.... 

Stay Strong

<3

A Specialist Who Actually Cares?? - Gastroparesis Update

Heyy Guys

How's you all doing? 

I've had a pretty rough weekend to be quite honest. It has been pretty darn suckish! I spent Saturday in bed pretty much which might sound appealing to some but after 2 years of having many bed days and feeling pretty darn crappy is .... well..... crappy! As much as I have always loved a good lay in, feeling super sick and in pain isn't my idea of the perfect weekend lay in. To be perfectly honest, the medication that I'm trying now doesn't seem to be doing anything as of yet. My mood has dropped but the pain specialist confirmed today that he isn't at all surprised by that as I stopped the last medication straight away due to side affects rather than ween my way off it slowly. It was within the anti-depressent family at a very low dose that then just works as a muscle relaxant which we had hoped would help the spasming muscles. We all know that wasn't the case! 

I had my appointment with my specialist today and he turned the pacemaker back up to the settings it was on before he turned it down. It pulses for 3 seconds and off for 2 I think? I don't remember to be honest, I could have just made that up and got all my numbers wrong though as I was a tad emotional during the appointment today. I think it was a mixture of extreme tiredness from not sleeping and not having energy from not eating & drinking along with being very fed up and weak now and my emotions just got the better of me today. I went straight to work after my appointment and just really was not there in soul just body. I didn't want to talk to anyone which is hard being that I work in customer service HAHA. I felt like I was going to burst into tears at any point and just yeah, wasn't feeling it is an understatement. Not a happy bunny and been in a lot of pain today again from the moment I woke up which is just so frustrating considering I haven't eaten anything today and had half a

The Most Amazing Family ( Picture from 2010 - I think :P )

cup of drink and its 9:30pm (well it was when I typed this part.... ). I'm just going through that time that I'm super fed up and tired and emotional and feel like I can't fight it and deal with it all anymore. I'm starving and want to eat so badly but I can't. I know the consequences of eating anything especially with the bad pain I'mm in from practically just breathing air :( It was nice to find out though that my specialists secretary called my dad on this afternoon as requested by my specialist as he wanted to make sure I was ok because he was worried because I was crying and down in the dumps when I saw him this morning. I thought that was really nice of him. I can't say I have ever had any Dr or Specialist ever be worried or care like that to check up on me later that day. It kind of regained my faith in him caring about me rather than just seeing me as another project to work on if that makes sense. I don't know but it made me feel good. I'm super lucky to have amazingly supportive parents who are both doing anything they can whether it be hassle my pain specialist to help me have a 'break period of pain' to get my strength up or just there for a good old cuddle and shoulder to cry on giving supportive positive vibes and stuff like that. Without them I probably would have given up a LONG time ago. So if either of you happen to be reading this.... I LOVE YOU BOTH TO THE MOON AND BACK AND COULDN'T ASK FOR BETTER PARENTS <3! 

Other than feeling pretty crappy not much else has changed. My specialist did mention to us today about Laser Acupuncture. He reckons it could potentially help with the pain and nausea and doesn't involved any needles.... Thank FFFFFFFF for that. We are looking into that and what it all involves and outcomes etc and maybe I'll give it a try... I'd try going to the moon if it would help to be fair! I shall keep you all updated with what happens with that and whether I try it or not etc. 

For now though, I think I am going to go and curl back up into a ball on my bed with my headphones in and music blaring and hide away from the world. Maybe even have a good cry and let it all out... assuming I can do that as crying does make pain worse and the pain level is pretty high right now as it is :( 

Sees you all later

Stay Strong

<3

And The Tiredness Hits... - Gastroparesis Update

Good Evening/morning/afternoon to you all 

(Where do you all live? Let me know in the comments)

I figured that it was that time once again to share some lovin' with you all. I am however being gassed out by my dog right now.... what is wrong with his back end tonight... so gross and probably wayyyy to much information BUT remember... 'Sharing Is Caring' :D

Anyway, getting back to what I was going to say HAHA... So last post, I was telling you about my nice 10 hour shift. Well, I completed it... I may have been delusional after from the tiredness BUT I did finish it in one piece. I did however get home and attempt to dry my hands before washing them because I was just so tired HAHA. Gave my parents a good laugh if nothing else though. The last few days since, I have been so very tired and in a lot of pain as per usual. The medicine that he gave me that I remembered the name of is called 'Tizanidine'. I am on an extremely low dose as the pain specialist is being super cautious as my body seems to be very sensitive to new medicines at the moment. The hope is to slowly increase it and pray it helps even just a little bit and that my body doesn't reject it or make me ill from it AGAIN! 

I am seeing my main specialist on Tuesday morning where he will be turning my pacemaker settings back up to the higher one as I have noticed a big difference since it was turned down and it's not the kind of different that is for the better.... lets just put it that way! It's been a tough few days with moments where I wasn't sure I would be able to complete my shift with my manager asking if I needed to go home and she would cover me (and end up doing a 15 hour shift.... there is more chance of me eating a 4 course meal and keeping it down with no pain than me giving in to my body and letting her do a 15 hour shift ... I'm way too stubborn LOL). I have a day off tomorrow YAY so I plan to rest up lots, catch up on unwatched programmes and Youtube videos and visit a fellow Gastroparesis Sufferer Friend who is currently in hospital. So I shall go keep her company for a bit and we can have a laugh and proper catch up. It's always refreshing and really nice to talk to and hang out with people who can relate and actually really understand how you are feeling because they are going through it too. No matter how much a friend or family member or anyone else tries to understand how we feel.... they just can't fully because they are not physically living it the same way we are. 

Anywho, that is all for now folks. I just uploaded a brand new Youtube Video so CLICK HERE to go watch it :) don't forget to subscribe and thumbs up it if you like it/want more!! :) 

I hope you are all doing well and starting to wrap up warm as the weather is beginning to get rather chilly... at least here in the UK anyway!! 

Well, Bye for now :) 

Stay Strong 

<3

Injections, Starbucks Cookies, Full Time & Stuff - Gastroparesis Update

Well HELLOOOOO There wonderful people

How are you all doing today? Having a good weekend so far?

I figured it was about time to give you all a little update once again. Lets start on the good stuff. The toe is on the mend FINALLY!! It's almost there.. not quite - but almost and almost is better that no where near.

On a not so good but normal kind of note, my stupid, unfriendly stomach and body. The last medication I told you about that I was being tried on has had to be stopped. I was getting way too many side affects. Literally the majority of the side affects list and quite badly too. I have now been put on yet another medication to try, which as per usual, I can't remember the name of it to save my life. My bad - what can we do haha!! So, I'll get back to you on that :) Forgive me? Mr Pain Dr also gave me another injection but this time it was only with the local anaesthetic, not the cortisone steroid as well. It was to give me some relief that night so I could try get some food down me. It was also for his benefit to work out ideas and such based on whether it has any affect and if so what affect and for how long etc. Did it give any relief? HAHAHA who are we kidding. You and I both could have written that down on a card and sealed it for someone else to see once the injection had been done. It gave a slight bit of relief the day after like it usually would like first thing in the morning but as soon as I ate or moved around, BAMMM it hit. 

YUMMY MILK CHOCO CHIP

Raspberry & White Chocolate

On an even worse note, Starbucks has come out with new cookies (I work at Starbucks) and these cookies are sooo yummy. I am a sucker for a good cookie. The stomach..... not such a fan. I have been literally 'risking it for a chocolate biscuit'. Unfortunately, I've definitely been on the losing end of the risk =[ It tasted good though and I'm sure all the ones to come will.... hey, if it tastes that good and it's in the form of a cookie.... the stomach is going to have to suck it up and deal with it. I am not going to let it take my cookies away too. I'll just have to suck it up and cope with the pain for the cookie (or half a cookie that I can manage)!! So far so good with the supervisor position. The tiredness of the full time is beginning to hit me a bit but because my boss has kept my days off split so that I work a couple days and then have a day off to rest, work a few and off and so on it hasn't been too bad just yet. It's slowly catching up with me and so is the pain and nausea but for now, I'm doing ok. Loving having the power HAHA who wouldn't??

YAY MAKEUP :D so excited!

On a pretty FABULOUS note, I won a mini contest thing (that I don't really remember entering nor winning but who cares) with Maybelline Makeup. The prize? FREE MAKEUP!! Every girls dream. After a hard day work and pain as usual, get home and handed a GOLD ENVELOPE that came in the post to find not one, not two, not three BUT FOUR bits of makeup by Maybelline. As you can imagine, being that I LOVE my makeup and beauty and all that good stuff, I was... well.... MADE UP haha!! If any of you beauty lovers would like a review on any of the products either on Youtube or here be sure to let me know :) 

Well, that's all for now. I'm off to bed as I have a nice long 10 hour shift tomorrow. Longest shift in about 2 years... should be interesting. Wish me luck!! My sleeping is pretty non exsistant so if you are bored in the middle of the night, you know my links to come chat with me :) keep me company LOL!! YOLO

THANK YOU ALL SO MUCH FOR THE SUPPORT SO FAR - can't believe I am almost as 1000 page views already.... INSANE <3

Question of the post: What is the one food item that you can't help but eat and are a sucker for? Let me know in the comments below!! 

Over and out :) 

Stay Strong 

<3

I'm Alive - Gastroparesis Update

Hellllooooooo There

How are you all doing? 

I just want to start off by saying that I am sorry it has been quite a while since I last posted - I am alive... just! My health seems to be on a downward spiral once again :( NOT COOL!! 

The toe seems to be VERY slowly improving(ish). Still going back and forth to the nurse trying different dressings and creams to get this stupid granulation to get off my toe. It just doesn't want to leave. Enjoys hanging onto me.... least someone does hahahahaha 

My tummy is just being a lil' poop to put it politely. I've been in a lot of pain recently so have barely been eating meaning my energy is... well.... pretty much non existent once again. Not sleeping properly doesn't help much either. I worked a 7 and a half hour shift yesterday, got home and about 30 minutes after I got home (if that), I laid down on my bed and that was that. I fell asleep (in my work clothes and glasses)! I woke up every other hour or two but slept until about 8:30/9am today with a nose bleed. Random or what? I feel no better for it though as I kept waking up constantly throughout the sleep. So, it was a super disturbed sleep and didn't make me feel much better. I spent the rest of the day in bed with the dog as I feel so lousy. As for tomorrow, I am going to drag my sweet A$$ into work tomorrow and do my best to get through the shift and show my body who is boss. Who wins? Probably my body ... but I can only try LOL. As of tomorrow, I am officially 'Team Leader/Supervisor" at work!! I really need my body to corporate with me or this is going to be extremely hard :( Only time will tell how things go. 

I'm pretty nervous though as my weight is dropping off again and is actually now lower than what it was at when my specialist put a feeding tube in last time. I am PRAYING that Mr. Pain Dr (next seeing him on Thursday) can sort out my pain so I am able to eat before it gets too much lower and my specialist says enough's enough and makes me have another feeding tube or something :( 

That's pretty much it for now as I am probably going to post this, roll over, cuddle the dog and attempt to sleep and not throw up as I am feeling pretty darn sick right now. Before I go though, I know a lot of my Gastroparesis friends are also not doing too great right now, so please keep them all in your prayers and love!! If any of you are reading, I love you all to the moon and back and always here to have a chit chat - we can keep each other company :) 

As always, be sure to comment below, and follow all my links and come chat to me. Will give me something to do when I am stuck in my bed not feeling too hot!! (There is a page with all my links on here if you don't already follow me on them)

Todays question is - What are your 3 must have things when you are sick in bed? 

Stay Strong

<3

Nurse Burnt My Toe??? - Gastroparesis Update

Hello Hello Hello

Long Time No Speak..... How you all doin'?

Thought it was about time for a little update. Mr Doggy is doing great. His cone came off and his paw is looking and feeling much better. YAY! We get to cuddle up close and personal again :D

Me & My Baby Snuggling
Arm In Arm.. LITERALLY
<3

As for me... I wish I could say the same =[ Since my last update, nothing has really changed to be honest. I think I may be having a side affect of the newest medication so we have got to keep an eye on that and I'm still not really eating or drinking. The belts have come out the wardrobe once again. NOT COOL!! I've had a rough week emotionally, physically and mentally. Yesterday (Friday) in particular. Was feeling pretty darn ill, fragile and down in the dumps and then got some news at work that finished me off and I had a little breakdown at work in the toilets on and off for the rest of that day. I then got home, pretty much went straight to my bed after a chat with my mum and was sleeping on and off from about 5ish because I was feeling so ill and emotionally drained and stuff like that. 

My toe is no better. OK, maybe I should rewind as I don't think I've explained or mentioned this in a previous post. Kind of gross but hey - sharing is caring HAHA. So the skin by my toe nail split, got infected (so had yet another course of antibiotics) and skin granulation started growing. For those of you who don't know what that is, it's when the skin cells basically get over excited when growing and repairing after an injury. They don't stop growing causing a lump of skin on top of your skin. Does that make sense for you non medically trained or who have never come across it before. So, the nurse burnt off the

The Silver Nitrate Sticks They Use
They 'Activate' Them By Putting Them Under Water
And It Sparks Them!! 

skin granulation with silver nitrate. Let me just take a second to tell you how EXTREMELY freaking painful it is. Not so much when it's being done but for the entire day after it's been done. It's now been burnt off twice because it then grew back a week later and both times I ended up having a bag of frozen veg on my toe for the rest of the day and when I was sleeping. Who knew frozen veg would come in handy for someone who can't eat them HAHA!! My toe is all wrapped up still and I am going back to the nurse again on Thursday. FINGERS CROSSED IT HASN'T GROWN BACK and the fluid that had started building up on the toe has gone down. My body and I seem to have a hate-hate relationship these days!! But, as a little fishy once told me.... ♫♫♫ 'Just Keep Swimming' ♫♫♫

Anyways, question of the post. What is your favourite thing about Fall/Autumn (depending on where you live :P)? - Seems random but I've been watching a lot of Youtube videos today about Autumn outfits and makeup and such :) x

Stay Strong

<3

Poorly Dog Is In The Ward - Gastroparesis Update

Hello you lovelies,

It's been a while I think (or it feels like it anyway) since I last did a blog post. I just don't quite know where time goes. Why is it that time either goes super slow or super fast? There just doesn't seem to be an in between or is that just me being special?

So, what's new? How am I? Has the injection worked? I hear you all screaming.... or not as the case is most likely to be. Hey! I can imagine and believe it if I want to :) 

So, where do I start? The injection was pretty darn painful when it was done this time, not going to lie. He did it slightly more over to the left of my stomach than last time and hit the spot where it was most tender and painful. My entire body stiffened up, my knees tensed and went dead straight whilst holding my breath attempting not to cry from pain. I felt like maybe it was a good sign? Maybe he had got the right spot and it would do the trick? HAHA who was I kidding. To be fair, the pain is SLIGHTLY and by slightly I mean like a crumb size better IF I don't eat or drink. If I eat or drink then..... we have .no lift off once again!! During the day, I have noticed a very slight improvement particularly before I move. As the day goes on however, we are back to square one. Which, quite frankly .... SUCKS... wouldn't you agree? I have to email Mr. Pain Dr either tomorrow or Wednesday to let him know what has happened since the injection to see where we go from here. Maybe a higher dose? Maybe do it in a few places? Who knows... I'm a little hopeful though as it has been the only thing that has shown ANY sign of improvement or possibility that it could potentially work alongside something else or something like that. I did some retail therapy yesterday with my sister and mum so that is always good :) Well, my purse doesn't necessarily agree with that but oh well YOLO  :D 

Maxi The Mental Dog

In other news, my baby boy (the dog, not an actual baby) is poorly. He has a poorly paw so he has been sulking for the past few days. He got a grass seed we think in his paw and then he licked it out and the hole it left got a little bit infected. So, he's on two lots of medication (still not quite up to my level just yet haha) and he has a cone round his head. He's not a happy bunny, but then would you be if

you had a cone round your head? He can't eat or drink properly without me feeding him or lifting the bowl up to his head. Sometimes he is super fussy and likes me giving him water through a syringe. I also have to scratch his head and behind his ears for him because when he tries all he does is give the cone a scratch. I don't think a plastic cone really needs a good scratch to get rid of an itch though. SPOILT DOG OR WHAT THOUGH? So, my bed is like a hospital ward now with the both of us. Oh, and I'm on antibiotics again for a stupid annoying infection. I swear my body just hates me!!!

So between me and the dog.... well.... what a pair eh?! 

Well, that is all for today. I filmed some videos today for my YOUTUBE CHANNEL, so I'm either going to go edit those, watch other peoples youtube videos, get distracted by cuddling the dog or hibernate for the night. Haven't quite decided which one to do just yet :) 

Question for the post - Do you have any pets? If yes, what animal and what's their name? If no, what would be your dream pet? Comment below or drop me a TWEET :) x

Love you all you sexy people :) 

Stay Strong

<3

Energy Fail - Gastroparesis Update

HELLLOOOOOO you lovely human beings

How you doin'? (Now say that again, but as if you are Joey from the tv show Friends)

I thought I'd give you a quick little update. Not too much has happened in the last few days to be honest. The pain has been getting worse and the energy has been getting lower. What do you expect when you're running on fresh, polluted and COLD air? Oh yes, Winter is definitely on its way. It is FREEZING!! I seriously wish I lived somewhere that was nice and warm all year round!! Don't you? Or do you like the cold and wet weather? Comment below!! 

Anyway, back on the subject of Gastroparesis. I have an appointment tomorrow with the pain specialist and he is going to be doing the same injection again but with a much higher dosage. He's going whack it in there and we are hoping and praying it does the trick. I'm losing weight again because I am not eating and quite frankly, I AM STARVING!!!! I am so blooming tired as well which is just not cool. Although, lying in bed, in pjs, under my duvet cover and snuggled up to the dog and teddy is rather cosy when it's cold outside :P Always a positive in every negative as they say. Well, I think the actual saying is 'Every Cloud Has A Silver Lining' but who cares about the details HAHA!

Not sure why I've put this picture in
But it's cute... SO I DID..
BECAUSE I CAN :D

Not much else to report as nothing has improved or changed and nothing dramatic has happened that doesn't regularly happen anyways. I shall let you lovely people know how the higher dosage of injection turns out so keep yo sexy fingers crossed because .... well I don't really know where I am going with this but it sounded good in my head! :) 

That's all for now. Speak to you all soon! 

Stay Strong

<3

New Year, New Achievement? Gastroparesis Update (&Life)

Welllll... Helloooo there you lovely human beings

How you all doing? Good? Great? Brill? 

I thought I'd give you all a little update as it has been a few days now.

What has been going on? 

Apple & Honey (AND HONEY CAKE)
 is a New Year Tradition

Well, for those of you who don't know, it was Rosh Hashanah (The Jewish New Year) on Thursday & Friday just gone. So, as usual we went to Synagogue on the Thursday morning. I lasted about an hour maybe and then I had to run out as I felt like I was going to through up. AWKWARD!! (sorry if this is a bit.... gross - but unfortunately it is life when living with Gastroparesis) Through the majority of my illness I have never really been one to be sick often it's usually been the pain. For the most part, the bad sickness comes when the pain is at a real high - which it has been recently in particular again. I've been lucky in that the majority of the time that I have gone to be sick, I have been at home or at least out of public view and near a toilet. This time... that was far from the case. Everyone was sitting down and

quiet listening to what was being read out by the Rabbi when I turned to my mum telling her 'I think I'm going to throw up'. I got up, ran across the room, out the Synagogue and across the car park to the bushes. My body does not deal well with being sick - but then again who's does LOL. A lot of the time that I throw up, my body goes into shock and I'll end up having or coming close to having a panic attack. As per usual, my body started going into shock and everything was going tingley and shakey and I was in tears. My Mum went to get my Dad and he took me home where I then went to throw up again (as I have many nights in the past few weeks). I was retching but nothing actually came out but I guess that makes sense being that I haven't eaten in well a while lets say, so there was nothing in there to come out. It then worsens the pain even more which is just NOT cool! I was horrified by it. It's made me super anxious about going back to Synagogue on Saturday next week for Yom Kippur (Day of Atonement) incase it happens again. Seat by the door for me I think!!! 

The pain doesn't seem to be getting any better which is frustrating and not making me a happy bunny at all as you'd expect. My pain is a real pain in the hooharr (what? It's the best I could think of that was polite :D ) Bring on Wednesday when the pain specialist is giving me another injection but with a higher dose of the Cortisone. Everything is crossed that this makes a difference!! It really is getting me down in the dumps feeling so ill and not being able to eat and being isolated from people and family when it comes to family meals be it my parents and siblings or bigger family get togethers that I don't go to. I've pretty much stopped going to family get togethers because I either don't feel well enough

and/or I am too uncomfortable being around the food whilst they are all eating and I can't eat anything even though I want to more than anything!! STUPID STOMACH!! GET YOU FREAKING ACT TOGETHER.... AND FAST! 

On a real positive though, if you have seen my 

video on my Youtube Channel (which I have attached to this blog post - be sure to watch it & maybe even thumbs up it) about being able to achieve whatever you want to, I mentioned how I was really proud of myself for managing to keep my job through all my illness. Today, I got promoted to Supervisor. That in itself is a huge achievement, but the fact that I have been through so much in the past two years and I'm still being given this opportunity and that they think I can do it has really boosted my confidence and my fight to beat this illness. It really goes to show that no matter what gets thrown at you, you can still achieve anything you set your mind to!!

Anyway, I thought I would leave you all with a positive!! My question for you all today is - What is the 1 thing you have achieved that you are the most proud of? It can be anything from getting out of bed if that's a struggle to a dream job or well... anything you wish it to be :) 

Don't forget to spread the word.... Help raise awareness and one day discover a cure!!
Be sure to check out my channel and show me some love there too PLEASEEEEEE :) would mean a lot <3 www.youtube.com/thedramaqueensoph

Love you all lots and lots like jelly tots

Stay Strong

<3

How The Pacemaker Settings Are Changed - Gastroparesis Update

Howdy my lovelies

As I told you earlier, I had an appointment today with my specialist. He is the one who diagnosed me and has done all my treatment such as feeding tubes, medication and the pacemaker of course. I went today for my check up and a general see how I am doing kind of appointment. 

The pacemaker is checked my using a device that looks like what I can only describe as the machine they use when you get a delivery and you have to sign for it. It has another bit connected to it that kind of looks like a plug but without the bits that actually go into the holes. I'm sure there's a technical term for them but oh well!! The 'broken plug' bit goes onto my stomach over the pacemaker and then my specialist can change settings and check that the pacemaker is working properly on the machine bit. I don't feel a thing.

Pacemaker Controller

Due to the fact that I didn't see much difference since we turned the settings up in May, he turned it back down today to see how I do then. By turning it down it means the battery will get around 6 years of life, whereas on the setting I had it on the battery only had 2 or 3 years. So, if there isn't much difference in how I am between them, we may as well have it on the lower setting. Am I making sense or have I lost you yet? :) 

Other than changing the settings, he said we just have to keep an eye on my weight, so I have to keep a weekly diary of what I weigh. Don't want too much weight falling off so we gotta monitor that carefully. There's not much else he can do for me as it is down to the pain specialist to help me with the pain and hopefully get me back to being able to eat again. At the moment, when I eat I am in sooooo much pain that it makes me need to be sick and retch but nothing comes out. I'm really bad with throwing up so my body then goes into shock or have a panic attack or something along those lines. So NOT cool. So I pretty much go straight to bed after that happens even though my sleeping is atrocious again. On the plus, I'm all caught up on all the latest news... I need something to do when I can't sleep for the majority of the night but everyone else is sound asleep HAHA!!!

I feel so drained emotionally and a bit downhearted because I am feeling so ill but there's not much we can do. I'm starving but can't do anything about it and feel like I'm going backwards once again. I have no energy and feel so tired after doing pretty much nothing and no sleep. All I can do is keep on with the fight and hope things improve I suppose. Maybe they'll find something new soon?

Anyways, that is all for today. I shall speak to you all again very soon :) Don't forget to spread the word to help increase Gastroparesis Awareness. 

On a happier note, if you fancy a laugh, you should definitely go check out my last Youtube Video. It'll give you a good chuckle that's for sure :) 

Stay Strong

<3

The Chubby Bunny Challenge

Welllll... Hellooo there all my lovelies

For this post it's a little different to what I've being talking to you about so far. Thought I'd mix if up a bit and make you all laugh. 

As many of you will know, I make Youtube Videos and LOVE doing it. So, I thought I'd share my last video with you all and hopefully give you a good old laugh if nothing else. I saw this challenge floating around the youtube world and so I roped my lil bro into doing The Chubby Bunny Challenge and well.... have a look for yourself and see how we got on. 

Fun fact... One Direction did this challenge with Zoella too!!! 

If it made you chuckle, I would love to know so be sure to comment on the video by going over to my channel. Whilst you're over there, maybe you could subscribe and check out my other videos? I'm sure you'll enjoy it and won't be disappointed HAHA :) Be sure to let me know in the comments that you got there from my blog... would be awesome to know.

Keep an eye out for another Blog Post later today on another Gastroparesis Update from my specialists appointment this morning.

Speak to you all later 

Stay Strong

<3