Flippin' Tube - Literally! | Gastroparesis

Hey Again,

Thanks for coming back to my blog!

Why is life never easy and always has one thing follow another to pee you off? Excuse my language. We found out why I've gone down hill when I was relatively 'stable'. My tube had flipped back into my stomach. So everything I was putting down it to avoid my stomach was, in fact, going directly into my stomach all at once. No wonder I was in so much pain. What's worse is that I had told the nutrition nurse about 4 times that something didn't feel right when I was putting stuff through it. Each time, she told me to wait it out and see if it improves. Another thing she said was that it was just the quantity of the liquid going through in one go when I do medication. She tried it again this time but I put my foot

What an x-ray of an NJ tube looks Like!
Not My X-Ray!
Would be pretty cool if it was though right?

down! It's my body and I knew something was not right! If she had just listened to me in the first place and boxed an x-ray for me, I might not have got as bad as I did and may have coped better with the horrific withdrawal symptoms I have suffered with this last medication.

It has kind of showed me though that without the medication going through the tube (when it's in the right place), I just can't cope and my regular medicines stops having any positive affect (all be it a little to start with)!!! Leaves me wondering whether I'll ever get red of the tube and be able to cope on my own!

I had an emergency appointment with my pain specialist on the same day that I had the x-rays done for the tube. Only, I've come out of it not really knowing what the point of it was. There's no plan in place for the next step. So now I have to wait until I see him again next month and hope something is put in place. I have told him I won't try anymore medications because I can't cope with the side effects and withdrawals of them all. It knocks me back both mentally and physically! It's so frustrating because it seems like such a waste of time not trying something. 

I'm starting to get back to where I was of, well... I don't really know. Where was I? I'm not eating meals still. I might try little bits of things but it's just that... LITTLE. The pain is still horrible and my energy levels aren't great. I know everyone says that it'll get easier and to stay positive..... but to be quiet honest, it's not getting easier - it's getting harder and staying positive is hard when nothing is working and my friends who are suffering too are dying. Such little research is done on it as it is barely even heard of so there's only little chance of something being found to help. Sorry to be a Negative Nancy.. wait or is it Nelly? What's the saying?!?! :| That's awkward.

Please - Help us raise as much awareness as physically possible! You know you want to ;)

Well, thats all for today! 

Until next time.... 

Stay Strong

<3

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