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wall1409
wall1409 Member Posts: 294
edited 18. Feb 2013, 06:03 in Living with Arthritis archive
Hi Folks

Going to see rheumi as an emergency appointment this Friday and he will try and get neurologist to see me same time otherwise it may be a wait till 4th March but I'll see.. Having a bad 2 weeks , hot tea all tastes luke warm and ran bath checked with hand felt warm stepped in and wow was it hot...my brain is not doing what it should be right now. My veins feel like they are hurting. Plus side, nice cosy cottage in Pickering north yorkshire Friday till Sunday, log fire warm blankets and DVD's with hubby and our daughter....cant wait.


Wendy x
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Comments

  • elainebadknee
    elainebadknee Bots Posts: 3,703
    edited 30. Nov -1, 00:00
    Wendy

    Good luck and good you got an emergency appointment...Sounds horrid!

    Elainexx
    wall1409 wrote:
    Hi Folks

    Going to see rheumi as an emergency appointment this Friday and he will try and get neurologist to see me same time otherwise it may be a wait till 4th March but I'll see.. Having a bad 2 weeks , hot tea all tastes luke warm and ran bath checked with hand felt warm stepped in and wow was it hot...my brain is not doing what it should be right now. My veins feel like they are hurting. Plus side, nice cosy cottage in Pickering north yorkshire Friday till Sunday, log fire warm blankets and DVD's with hubby and our daughter....cant wait.


    Wendy x
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
    Fingers crossed for your appointment. Mig
  • wall1409
    wall1409 Member Posts: 294
    edited 30. Nov -1, 00:00
    Dont believe I have just been told over the phone after 12 weeks delay that my claim for DLA has been dissallowed, this is all because I dont have a prognosis, how on earth do they know how this is affecting me on a piece of paper, worked all my life and now this.

    wendy x
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Glad you managed to get an emergency appt. And yes of course I will be in your pocket! Good luck let us know how it goes.
    Bloody hell sorry about your DLA, when you go Friday ask for a written report/letter about your diagnosis. If the consultant woun't give you one ask your G.P for a written letter explaining your diagnosis and appeal the decision of the DLA Wendy. Unfortunatly we who are the sick are the ones who have to fight for what should be ours!
  • wall1409
    wall1409 Member Posts: 294
    edited 30. Nov -1, 00:00
    Its so so unfair, I only rang DLA on Friday to tell them my condition had got worse and they said they will informa the decsion maker, lady over the phone has told me that message may not have reached the decision maker but to wait untill I get the reasons for refusal letter and call back. Its just another blow, I dont understans DLA at all as its supposed to be based on your needs not your diagnosis, but they are ignoring my needs.

    Wendy x
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Wendy
    Glad you got an appointment.
    Enjoy your weekend afterwards as well

    Love
    Hileena
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The very best of luck for the appointment, maybe an answer or two could be in the offing which would be a very good thing. I hope you enjoy your long week-end away: keep yourself warm and snug, relax as much as you can and leave your troubles behind for a short while, you need that break.

    As for your baths could you ask someone to check the temperature for you? When one is denied one's full senses life becomes an awkward and dangerous place. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • wall1409
    wall1409 Member Posts: 294
    edited 30. Nov -1, 00:00
    Thanks DD

    I have to have a bath now only when someone is in which is awkward as both my hubby and daughter work so I will just have to try my best with a rub down prior to hospital appointments as long as I dont smell I dont care :lol: And you have just jogged my memory I need to see if hospital could provide transport or I may have to get a taxi in.

    Wendy x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I haven't had a bath for years, the getting in is OK (gravity-assisted plus resulting tsunami :wink: ) but getting out? Nuh-uh, my knees don't bend sufficiently so showers it is. Our shower is over the bath so some minor gymnastics are required but I find it quicker and easier. On my poorer days, however, I wait until someone is around, that's just sensible. Go get that transport sorted! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • wall1409
    wall1409 Member Posts: 294
    edited 30. Nov -1, 00:00
    Transport arranged, all ready. I get in bath but have to try and turn on my knees and use zimmer frame to help me get out, not ideal but our shower is too small for a seat, but we will try and sort this problem money permitting one day soon I hope.

    Wendy x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Ah, I assume the Johnny Wilkinson crouch position when under the gushing water! I have a bath board but I can't sit on it, it's too low. Oh the things that are sent to try us! I'm glad the transport is sorted, well done. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • wall1409
    wall1409 Member Posts: 294
    edited 30. Nov -1, 00:00
    My husband has a go at me but he has back problems and I dont want him hurting himself helping me, imagain DD if I had to get out the bath in a hurry, :o
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hi Wendy,
    I Just wanted to add my good luck for the Friday appointment. Remember your list and fingers crossed that you do get to see both consultants.

    The long weekend sounds lovely, nothing like a log fire. :D

    Sorry about the DLA, it was the last thing you need to hear on top of everything else.
  • wall1409
    wall1409 Member Posts: 294
    edited 30. Nov -1, 00:00
    Thanks Ironic

    I'm up and down like a yoyo, crying one minute, joking the next. All I am thinking is ," what next". All I want is this sorting out I know its not normal and I dont feel myself at all, cant ait for the diagnosis whatever that may be and move on. I want my life back on track anyway I can but at least my excellent GP has supported me and recognised I need help and fast, hospital have messed up but mainly office mess ups not rheumi, he's probably quite shocked at his sectretarial teams blunders also. I've always said, if it wasnt for bad luck I wouldnt have any luck at all but lets hope that changes soon.

    Really appreciate everyone replying, I must be driving you all up the wall but I am amazed how supportive you all are and dont know how I would get through this without you all.

    Wendy xx
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hi Wall
    I am so glad you have got that appointment, I will be thinking about you and hope it all goes well....((((((())))) xx
    Love
    Barbara
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Aw Wendy, you are bound to be up and down, who wouldn’t be. It is frustrating when records go missing. It happened to me first time round but I went to another hospital and it worked out well for me in the end. I am pleased you have a good GP they are worth their weight in gold. As you say the consultant is doing his job so take heart.
    Just take one day at time for now, rest up and jot things down when you feel up to it. Sometimes a good cry is a good thing; it can be an escape valve. Deep breaths and you will get through this flower.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    You're not 'driving us up the wall'. You're going through a very tough time and we all recognise tough times even if our own take a slightly different shape. Friday's not far off now and, hopefully, with it, some answers.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • wall1409
    wall1409 Member Posts: 294
    edited 30. Nov -1, 00:00
    Had a bad night and its not easing, now the tingling pins and needles is in my chest, feel bruised to touch from neck to hips, just rang GP and he's at another surgery so receptionist is going to message him for advice...Spoke to a lovely lady from CAB who has epilepsy as we were discussing the fit? I had on Thursday which I remember in full detail and she said if this was a fit I would not remember a thing and advised I should really be checked over properly as these symptoms are getting worse.I am deliberatly sitting at PC to try and take my mind off it.

    Wendy xx
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Hi Wendy so pleased you have got your app/s for friday here's hoping you get to see the neuro as well, I have sensory nerve problems and have to be careful with the heat and cold, will certainly be in your pocket on Friday, hope you have a lovely relaxing, pampering weekend.............Marie xx
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I hope the GP gets back to you asap, Wendy. I agree that this new development would be worrying but, hopefully, it's just those nerve endings playing up. Always remember that NHS Direct are there or A&E as a last resort. I usually find that, if I have a back-up plan in place, things don't seem quite so bad.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Wendy don't feel bad for having your emotions all over the place, we have all been there when we are having to deal with pain! One minute all is good and you can relax then in a flash all that can change if your suffering with a pain you can't control or like a flare up, you just cry and lash out at your OH or family. So we understand what your going through.

    I suffer with sezuires and like the C.A.B lady said when you have a epileptic sezuires you are not aware when having it and when you come round your 'out of it' not knowing where you are or what's happened. The only thing that makes me realise I've had a sezuire is you sometimes become incontinent and wee or sometimes the other and/or bite your tounge or inside your mouth and bleed. It is very scary!

    When you go to the hospital Friday or when you see your G.P next I would ask for a Occupational Assessment of your home. Because you could get some help with the bathroom problems. They may beable to get you an aid to help you or sometimes (and this depends on what score they give you after doing house assessment) can get you a new shower built with seat for nothing. So very much worth discussing!! Hope Friday is a positive appt we will all be tightly packed in your pocket!
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello Wendy
    Pain does through our emotions all over the place,I can suddenly break down crying and I am not that sort of a person.
    I do think it is away for your body's way of releasing things.
    I will be thinking about you tomorrow and Hope it goes well for you, dont forget your list of questions and a pen to writs things down, my consultant well one of them is quite used to me taking notes... :)
    You take care (((((()))) xx
    Love
    Barbara
  • wall1409
    wall1409 Member Posts: 294
    edited 30. Nov -1, 00:00
    Thanks

    Hubby has managed to get day off to take me, really pleased.. Gp has been as had a rough night and getting pins and needles in lower abdomen which seems to be putting pressure on bladder, he admitted he feels frustrated as he is a medic not a specialist but will ring hospital to chase up neurologist just incase rheumi cant. He asked more detail of the fit? I had on Thursday, he does not believe this was a fit and believes it may have been a mini stroke due to nerve damage. Told GP I am still going to cottage but will be back Sunday, he gave usual advice, ring 999 if I hav another TIA and keep indoors and warm etc but could understand why I needed to go. Got my furry deer hunter hat, thermals, thermal socks, hand warmer so ready, and thats just for the cottage :lol:

    Wendy xx
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
    Hello Wendy. Hope your appointment went well and you have been able to get some positive help. Enjoy your weekend by the log fires - sounds lovely. Take care. Beryl.
  • frogmorton
    frogmorton Member Posts: 29,332
    edited 30. Nov -1, 00:00
    Hi Wendy

    You have had a rough time!!!

    Please don't feel you need to apologise to us lot and feel you are 'driving' us 'up the wall'!!! No way are you at all.

    We are all here for each other to support especially if one of us is suffering!

    Will be right there 'in your pocket' tomorrow. Fingers crossed for some answers

    love and luck

    Toni xxx