Okay so i got a letter from the Tribunal Services yesterday who i wrote to asking to postpone my tribunal.. they denied the postponement as they think i will be able to gather all the information by the 1st of March.. They obviously dont know all my doctors!
I have managed to get a letter from my Rhemotologist Occupational Therapist so far outlining my treatment however because she "diagnosed" me and isnt a consultant the dianosis isnt offical till a Rhemotologist has seen all the test results and signed and agreed it all which obviously could take some time.. but at least i have that letter i also have a filled in questionairre stating stuff i can and cant do this is signed by her..
I also have a letter from my Social worker basically saying how much money i recieve from Social Services and saying that i need care and help otherwise otherwise i wouldnt be recieving the money..
I have also spoken to my Rhemotologist twice today and he is going to gather all my notes and write me a letter and hopefully officalise the diagnosis... whether its here in time is a different matter..
I am exhausted i think the DLA and Tribunal Service actually forget we are ill when they expect us to do all this "running around!"
Friday, 12 February 2010
Friday, 5 February 2010
fight for the right!
Okay so lifes got a little more complicated.. i havent just got fibro and all the stuff that came with it..
I went to an appointment to see a Rhemotologist Occupational Therapist on Wednesday and did some "tests" it seems i have hypermobility syndrome too its been confirmed. 9 tests on a "benton scale" or something you have to have three usually to have hypermobility have have eight of them.. almost nine.. so i have it pretty badly.
It also explains alot of things whilst i was growing up as hypermobility is a syndrome from birth. Apparently all the problems i had with my ankles and legs when i was growing up are part of it.. my eyesight. The "Growing pains" etc all part of it and also the fibromyalgia *sigh!* Slowly getting used to wearing the new resting splint which eventually i will have to wear at night time..
Lots of things are going to happen now i have had a special splint made for one of my wrists and hands to try till my next appointment month when they will see how its working and if its helping make one for the other hand and wrist.. they are also ordering some special gloves to help my hands when i am typing also i am being refered to rhemotologist physiotherapist to help with my hands and legs and apparently she will be able to get my some specialist crutches that wont hurt my hands so much.
Apparently other things in the pipeline are knee braces and thumb protectors.. sigh so much happening..
The bad thing is i got my date for my tribunal yesterday i have been making lots of arrangments and phone calls today i am trying to postpone it so that i can get lots of information from my doctors and OT RE the hypermobility syndrome as that might help strenghten my Disability Living Association Tribunal.. so been very busy and i am very very tired... really hoping they will postpone it!! lol been waiting so long for it to happen and now i dont want it to happen right now!! crazy!
Had chaos as i had a letter for physio but it was for local health centre not hospital so OT has had to reorganise.... Also phoned my Social Worker to see if she can write me a letter re my tribunal i seem to have spent most of the day on the phone!
Phoned the local Independant Living association for help to see if they can provide an advocacy with the Tribunal and apparently they have lost the contract so they cant help me so it looks like it will be just me and my fiance and possibly my carer if i can swing that to happen with my carer agency..
We had someone from the Council come on wednesday who said basically without middle or higher rate care there is no chance of any grants to get our bathroom turned into a wetroom this is the main reason i am fighting for the DLA.. the extra money would be nice but this is the main reason
Going to have a nice rest over the weekend! i think i deserve it i havent done any of my pacing i usually do this week.
I went to an appointment to see a Rhemotologist Occupational Therapist on Wednesday and did some "tests" it seems i have hypermobility syndrome too its been confirmed. 9 tests on a "benton scale" or something you have to have three usually to have hypermobility have have eight of them.. almost nine.. so i have it pretty badly.
It also explains alot of things whilst i was growing up as hypermobility is a syndrome from birth. Apparently all the problems i had with my ankles and legs when i was growing up are part of it.. my eyesight. The "Growing pains" etc all part of it and also the fibromyalgia *sigh!* Slowly getting used to wearing the new resting splint which eventually i will have to wear at night time..
Lots of things are going to happen now i have had a special splint made for one of my wrists and hands to try till my next appointment month when they will see how its working and if its helping make one for the other hand and wrist.. they are also ordering some special gloves to help my hands when i am typing also i am being refered to rhemotologist physiotherapist to help with my hands and legs and apparently she will be able to get my some specialist crutches that wont hurt my hands so much.
Apparently other things in the pipeline are knee braces and thumb protectors.. sigh so much happening..
The bad thing is i got my date for my tribunal yesterday i have been making lots of arrangments and phone calls today i am trying to postpone it so that i can get lots of information from my doctors and OT RE the hypermobility syndrome as that might help strenghten my Disability Living Association Tribunal.. so been very busy and i am very very tired... really hoping they will postpone it!! lol been waiting so long for it to happen and now i dont want it to happen right now!! crazy!
Had chaos as i had a letter for physio but it was for local health centre not hospital so OT has had to reorganise.... Also phoned my Social Worker to see if she can write me a letter re my tribunal i seem to have spent most of the day on the phone!
Phoned the local Independant Living association for help to see if they can provide an advocacy with the Tribunal and apparently they have lost the contract so they cant help me so it looks like it will be just me and my fiance and possibly my carer if i can swing that to happen with my carer agency..
We had someone from the Council come on wednesday who said basically without middle or higher rate care there is no chance of any grants to get our bathroom turned into a wetroom this is the main reason i am fighting for the DLA.. the extra money would be nice but this is the main reason
Going to have a nice rest over the weekend! i think i deserve it i havent done any of my pacing i usually do this week.
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