The random rants and meaningful musings of seven digital divas (who happen to have MS)
Monday, July 16, 2007
There have been a few changes at my hospital, for the last 4 years I've been seeing Prof Bates from the RVI and his team of nurses, they have clinics throughout Cumbria and South West Scotland, as well as in Geordieland. However, my health trust have decided that they don't want him anymore and have employed 2 new neuros. Now, I'm sure they're very nice BUT Prof bates has access to LOADS of drugs (all legal I'm sure) as he secures alot of drug trials, he's world renowned and... he likes me! PLUS I really couldn't do without his nurses, they have been a fantastic support to me, and I trust their knowledge and judgement far more than anyone at my GPs practice (sorry Dr J.Bloggs it's true)
Now the thing I'm most worried about, the thing that effects me personally, is 2 years ago P.B told me he that he'd had some bad news and a drug he'd been trialing, Antegren (now Tysabri) had been banned because it was deemed unsafe, however he was confident they knew what the problem was and the drug would be available in 2 years. Now I assume the reason he told me this was because he planned to put me on it. I had planned to ask P.B on my next visit what my chances were of getting it and use a bit of blackmail, in that he told me about it 2 years ago, insinuated he wanted me on it and I've had my hopes up for the last 2 years that something was going to get me out of this hole (which is true!)
So if I end up with a new Dr THEY won't know i was told about tysabri by another Dr, and I'm sure the world and his mother has asked for tysabri, and I don't think I'm anymore deserving of it than anyone else but I HAVE to try!
I've been on interferon for 4 years and I've not had the easiest ride on it. I was still doing my A Levels when i was diagnosed in September 03 and within 3 weeks i had to leave school, I had a list of side effects as long as my arm, one of which was none voluntary anorexia. I dropped a stone (and i don't have many stones to drop) and i caught every bug going that winter, each of which made me weaker and weaker. For the first 6 months I basically got out of bed in the morning, came downstairs and got back into bed on the couch. Even drinking a cup of tea exhausted me so much i had to lie down afterwards. I didn't start to pick up untill the following March when i was given a break by the winterbugs.. only to go down again the following winter. Now 4 years on things are a hell of a lot better. Round the house I do ok, I dont APPEAR to have MS, I'm feeling quite happy within myself, but bugger me this fatigue! Its the only thing I haven't been able to conquer and I'm pretty sure a big chunk of it is down to the interferon. obviously not all, but enough!
Anyway, I don't like to dwell on all that crap but i have to set the scene for you so you understand where I'm coming from. I'm 22, I still live with my parents, no employment prospects healthwise, no employment prospects qualificationwise, no driving licence (you've heard that gripe), no marriage/family prospects, no money for a house, and no idea how i could afford to live independantly. All I'm asking for is a chance! A chance at life! I can't stay treading water, I have to do something!
Now i know all this sounds a bit self pitying, I am doing things to try and help myself, but i just need that extra bit of oomph! I've been learning how to make jewellary with the hopes of running a buisness from home. Ebay store, jewellary parties etc etc but i still need a consistency of energy to do that. I've been having great day dreams though about my new enterprise... making a catalogue... designing a website... owning a shop and getting my dad to work in it after he retires and then I can tell HIM what to do... aaah that'll be the day! I think that's actually my favourite daydream!
Maybe I'll post a few photos of the stuff I've made... and you can all tell me how clever I am and fluff my ego
see you later alligators xx