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
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| 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
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