Good Things and Only Ok Things!
So after venting all my rage I had earlier,I am now going to do do a less gloomy update about what my coming week and maybe some inane memes or something to take my mind off nasty scum or looming hospital appointments.
Well tomorrow (oh well looking at the time it's today now..)I am going back to Newcastle to see Walls Of Jericho.I think it will be a fine evening,getting drunk with Stu(well not too drunk 'cos I have hospital the next day!)and watching a band with who are all honestly nice guys and pull out rocking songs :)
Wednesday is the day that for the first time I see my Movement Disorder Professor(he's a specialist Neurologist that deals with Dystonia and parkinson's disease and all illness within that sector,I think!)
I'm pretty apprehensive about it really.I'm rarely scared of seeing doctors as
Yet this time this is not a pediatric doctor so I won't be his oldest patient,therefore the one who has a sense of humor on par with his!
I am also in a completely new hospital where I know no one at all(RVI Newcastle).
The main reason I'm so worried about this visit is well a number of little things.
The main one being I am getting my genetic results back for my gene malfunctions.Which is a bit odd as I've never had something intrinsically wrong with me as such.It's always been something to do with my bones or brain damage from being born breach.
Also if I do have this faulty gene there will be the whole question of kids and what I'm going to do and blah!
I'm also going to *have* to talk about Deep Brain Stimulation Surgery with the doctor.
This makes me nervous for two simple reasons: BRAIN nad SURGERY!
Some of the other doctors~(neurologists) seem to think I am to immune to many antibiotics to have the op but others think that it is going ot be my only saviour if I want any independence or quality of life in ten years time.
Which leads me nicely to the whole progonisis of the disease and how badly it is going to affect me.
The neurologists and orthopedic surgeons I've already seen seem to think that I have a pretty severe case as it's not just spordic spasms(which I'm getting now in my hands,torso and neck)but harshly sustained spasms which then lead to muscle waste(this is rare in dystonia apprently).
At the min they seem to think I may lose use of my arms,stomach n back muscles n partialy in my neck muscles which are all entirley copeable with but they also seem to be exploring if my vocal cords and eye muscles are going..this scares me as I LIKE TO COMMUNICATE ALOT!
They are also testing for whats causing my dystonia and looking to see if I could have another Neuro condition because my balance and other things like that are off.
In good things about it at least I will have a diagnosis *fingers crossed* and the doctors will be able to sort out more suitable medication for me(not ones that make me sleepy and upset!)!
On Thursday at 12.25 Me and Stu are setting off to France for Fury Fest!
I can not wait there are amazing bands playing like:.Jello Biafra and the Melvins,slayer,Fantomas,Pennywise,Megadeath,Obituary,The Business ,The International Noise Conspiracy,Integrity,Neurosis but to name but a few!
We are also staying in a lovely hotel (hehe no smelly camping oh no!)and are deffinatley going to have an ace time even if it is bad news at the hospital and I can not wait woooooo!So I will be back in the UK on Tuesday so here is my last entry till then!Woooooooo FuryFest..Oh yeah..being in a wheelchair is awesome as me and Stu get VIP passes wit wooooo!
Cheerio!
Well tomorrow (oh well looking at the time it's today now..)I am going back to Newcastle to see Walls Of Jericho.I think it will be a fine evening,getting drunk with Stu(well not too drunk 'cos I have hospital the next day!)and watching a band with who are all honestly nice guys and pull out rocking songs :)
Wednesday is the day that for the first time I see my Movement Disorder Professor(he's a specialist Neurologist that deals with Dystonia and parkinson's disease and all illness within that sector,I think!)
I'm pretty apprehensive about it really.I'm rarely scared of seeing doctors as
- 1.Doctors usually think I'm funny(in a nice way!)
2.Normally there's some nurse,doctor,physio,porter around I have known since I was knee high to a grasshopper.
3.It's always the same ..oh dear..we don't know whats wrong with you..you will never walk again and that we will refer you to someone else that knows more than us.(All doctors tell me this like I'm going to die but I've known since I was 15 and I am fine with it)
Yet this time this is not a pediatric doctor so I won't be his oldest patient,therefore the one who has a sense of humor on par with his!
I am also in a completely new hospital where I know no one at all(RVI Newcastle).
The main reason I'm so worried about this visit is well a number of little things.
The main one being I am getting my genetic results back for my gene malfunctions.Which is a bit odd as I've never had something intrinsically wrong with me as such.It's always been something to do with my bones or brain damage from being born breach.
Also if I do have this faulty gene there will be the whole question of kids and what I'm going to do and blah!
I'm also going to *have* to talk about Deep Brain Stimulation Surgery with the doctor.
This makes me nervous for two simple reasons: BRAIN nad SURGERY!
Some of the other doctors~(neurologists) seem to think I am to immune to many antibiotics to have the op but others think that it is going ot be my only saviour if I want any independence or quality of life in ten years time.
Which leads me nicely to the whole progonisis of the disease and how badly it is going to affect me.
The neurologists and orthopedic surgeons I've already seen seem to think that I have a pretty severe case as it's not just spordic spasms(which I'm getting now in my hands,torso and neck)but harshly sustained spasms which then lead to muscle waste(this is rare in dystonia apprently).
At the min they seem to think I may lose use of my arms,stomach n back muscles n partialy in my neck muscles which are all entirley copeable with but they also seem to be exploring if my vocal cords and eye muscles are going..this scares me as I LIKE TO COMMUNICATE ALOT!
They are also testing for whats causing my dystonia and looking to see if I could have another Neuro condition because my balance and other things like that are off.
In good things about it at least I will have a diagnosis *fingers crossed* and the doctors will be able to sort out more suitable medication for me(not ones that make me sleepy and upset!)!
On Thursday at 12.25 Me and Stu are setting off to France for Fury Fest!
I can not wait there are amazing bands playing like:.Jello Biafra and the Melvins,slayer,Fantomas,Pennywise,Megadeath,Obituary,The Business ,The International Noise Conspiracy,Integrity,Neurosis but to name but a few!
We are also staying in a lovely hotel (hehe no smelly camping oh no!)and are deffinatley going to have an ace time even if it is bad news at the hospital and I can not wait woooooo!So I will be back in the UK on Tuesday so here is my last entry till then!Woooooooo FuryFest..Oh yeah..being in a wheelchair is awesome as me and Stu get VIP passes wit wooooo!
Cheerio!