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