Here in the UK, our Doctors have to apply for funding for our very expensive Meds. My Professor has applied for a trial med for me – Canakinumab, since I’ve tried all the licensed stuff and some trial Meds too, with nothing kicking the Still’s 😦
Well, I had a letter today… They’ve rejected the funding request :(. So very, very frustrating! We now have a chance to appeal, so I’m assuming that’s Prof’s next plan… I contacted him today, so we’ll see what his response is?
It’s a really annoying system!!! Applying for Meds we need is a battle!!!
I really hope we get somewhere as soon as we can… Things really aren’t going well at all, and time is just making things worse and worse!!
I’ll keep you posted…
Us Spoonies certainly have experience of the sleep phenomenon! Either through lack of it, or far too much! Tonight is no exception, so I thought I’d spend the early hours being productive on here 😉
Fatigue totally wipes me out! Far far too often I’m collapsed and fast asleep on my sofa early evening, which drives me mad!!! My boys are perfectly happy watching TV together, but I hate it and so want to join them 😦
Then at the other end are the endless nights spent lying awake due to the pain! No matter how many fentanyl patches i wear, I still wake in pain far too often :(.
Tonight I’ve had both ends. First I slept whilst my son watched the TV snuggled up on my bed. Then I woke and have been unable to sleep since because of pain!
Thank goodness for 24 hour TV, the Internet and good books!!! To be honest, it wouldn’t bother me so much, except for the pain of course!, if I didn’t have my boys normal sleep patterns to work around! Since whatever time of day I can find something to do which keeps me happy ;).
So I’ll lay here with snoring dogs, 24 hour news, social media and my kindle :D.
But it would be nice if my Fentanyl increase tomorrow has a positive effect on the pain ;). Time will tell…
Too few spoons and much too much pain and flueyness = a not very happy me 😦
I know things are bad when I fail to leave my bed and find it painful to even type from the iPad!!!
But chin-up, I’ve realised I’m on the decline. Since Christmas things have been pretty horrid, and my nurse made it all very clear when I saw her this last week that things aren’t good at the mo :(. But new Meds are on the cards, and if it gets worse, I’m sure my Prof will increase the steroids too to fight this damn awful disease!
In the meantime I’m keeping positive and imagining my new dream life!!! How can I not sit and smile when I imagine myself sat aboard the planned boat!!! Yes I’ll still have this damn awful pain and feel so dreadful with the fevers, flueyness and fatigue, but I can sit enjoying the water! A small meander along, with my lovely friends navigating, whilst I chill on deck!!!
I’ve seen the risks and effects of uncontrolled Still’s :(. It’s pretty grim! But I’m planning to enjoy absolutely everything I can, and try all the Meds offered to fight this!!! And live, live, live!!! It’s definitely the best attitude to enjoy everything!!!
And most of all I’ll keep on smiling!!! It’s the best medicine of all!