Sunday, 22 September 2013

Life Really!

Hi :)

So when i last blogged i had lost my ability to swallow - and i still cant swallow anything -_-
I was so hoping it would be better right now, i had my swallow xray thing and i have moderate to severe oropharyngeal dysphagia :( but they are happy with me to keep trying to swallow as long as im careful. My swallow reflex is very delayed so the food / liquid just sits in the back of my mouth / throat and doesnt go down, so im totally reliant on NG feeds at the moment. I will be getting a PEG feeding tube in a few months if i have not improved but im going to work really hard in speech therapy so i can try and enjoy food again. The best thing that has come out of not eating is that my chest has never been so clear!! Seriously! Hardly any mucus and i hardly have to do physio anymore! Its amazing really! - cuz no food is going into my lungs!

You know what sometimes its tough being  intelligent, feeling your body fail you in different ways everyday really tests your strengh and will power, especially if no doctor can tell you whats actually causing all the diseases you have! Ok rant over ;) But yea i have not 'eaten' anything in over 3months now! I have another appointment in London on tuesday to see my neurologist which is weird because i was not supposed to see him until november but he rang and asked me come see im on tuesday - so i am a little disturbed by this - hopefully good news :/ i can only hope lol I had my usual bloods taken and my creatinine levels were low which show i have low muscle mass ( i would have never of guessed) haha and i have low blood count AGAIN - as usual, its never normal due to my immune defect. And thats about it really. I will leave you with a few pikks :)
 Me and Daisy :)

 Some of my meds.....
 Pink Med!!! :D

Bye :)

Thursday, 12 September 2013

Back to College, back to reality...

Hi :)

So i started back at college on Monday, and its been great actually, apart from Lucy not being here! Its so weird and a bit lonley without my evil companion ;) My lessons are good, my class mates are great - they actually talk to me haahaa and are not totally freaked out! Which is cool :) I had my MRI results when i went to clinic and they said my muscles are very small/ wasted away and my worst affected muscle is my bum / pelvic muscles haha i have a tiny bum ;) And my calf muscles are so tiny and have been replaced with fat.... hahaaa 
My swallow is still not working, i had a video X-ray of my throat / swallowing muscles and the trigger that makes you swallow is not working properly so it doesnt trigger the actual swallow so food / drink just stays in the back of my throat and if i breathe while its still there then i will be in big trouble.... So i have not eaten anything in over 28days..... hard to believe i know!!!! i miss the tastes but im not hunry.... ever! its so weird, and weird to think i get everything i need in a bag of liquid or 2 everyday! Amazing what they can do these days!
On the down side i get waves of sickness hit me througout the day :( i feel so sick i have to stop my feed and breathe through it, its awful! But the plus side......................... since i have had my NG tube my lungs have been so clear its unbelieveable! I dont need my physio hardly ever! i used to have to do it at least 2 times a day for 20mins and now maby one huff in the day and thats it! (CFers will know what i mean!) Its kind of proved to me that food / liquids have probably been going into my lungs. The consultant wanted to put in an NJ tube to replace my NG tube ( a tube into my intestines instead of just my stomach) but i said no! Because in 1 month if my swallow is not better i will be gettin a PEG feeding tube placed and that would of meant 2 procedures instead of just the PEG one so i said i would just wait for the PEG tube. I dont want extra pain/ procedures if i dont actually need them!!!

Anyways thats all for now!!! Just want to wish good luck to Lucy and everyone starting Uni this year!

Chloe :)