I know you can't help but....

skezier
skezier Member Posts: 11,333
Hi Helpline folk,

I know this one is a dead end but I need to scream and its not fair on the main forum cus I don't want to scare people ....

Simona especially wont be surprised to know I am in trouble....

saw the rumo.. well actually I didn't this time I opted to see the side kick.... the rumo is lovely, kind and gentle but not pro-active cus of this dam palatine scare thing....

Yep I have just renamed it :roll:

I sat there in the examination room, jeans and socks off, having just found out I have every possible neuro symptom from both the back and neck possible... while they disused if it was worth doing an mri cus what would they do with the results.....

I felt so small and frightened cus my future isn't good is it?

I also felt worthless and useless and very lonely....

I still do though I am not feeling so lonely cus well folk care via or here if no where else.

They were saying surgery is out the question as like as not... anyway a few sentences between them later i became visible again....

They agreed to an mri.. pulled my last one up.. the cord id dented the whole way down the lumber..... This time its possibly more so and deeper dents.....

Still the good news is the cutting in half is the pa....

That at least backs off for a while here and there.....

Sat here to day and this wave of fear came in... playing the 'will it give out' game... we al know it will... i don;t ant to be that person and I can;t be that person so I will fight it but its hopeless isn't it?

All I can see is being the incontinent gibbering fool stuck in the corner of a home. I spent my childhood being grossly neglected, that would be some full circle eh?!

This time I am scared..... I probably wont be in a day or two but you know what I chipped in as to weather or not I was worth it...

I actually said would sending me for a mri be worth the money?! They got me doing it now....

He told me he didn't think there would be anything they could do and r=there fore .... I said I would like to know what is up to once and for all so he asked me to choose the neck or the lumber to be mri'd.... some choice eh?!

Sat there, this big and mostly inviolable I chose the lumber... i have less feeling in my right leg from top to bottom, both sides than I do my arms....Its gone from not being worth it as what will we do with the results to urgent!

Sorry i really have gone off on one,I know you can't help and I know they are not going to even if they could...

Why don't they rod it?!

What does it take to get a nuro opinion.....How much would it cost to get the neck mri primevally... now there is a thought!

actually it is isn't it? Would that be via the gp?

Full circle again... I had to get the firsts scan of my lumber done priavetly.... did that show some stuff.... went from 'oh its only in your head' to a full decompression :lol:

That showed them :lol:

Oh they gave me some tablets that work... only the make me throw up... another choice pain or vomit ( I know TMI)

Haver you any idea how I get of this dam palatine crap?! Its so holding back any treatment and hope....

I done now (in so many ways eh?)

Take care

Cris the not worth it invisible thing x

Edited to say how do I become more assertive cus i got some choices to make when them result come back in eh?! I wont give up my way of life cus i can't for both the employers and me! Help I am so scared.....

Comments

  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Sorry the spell check and my eyes came up with the wrong word... I meant Palliative scare and pallative crap.... sorry about that word but tis better than what I was thinking :wink: Cris x
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    I just wanted to give you a big hug ((((((((((X))))))))))
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    cris you should know by now you can not scare us we will look to see what going on and send positive thoughts your way also buckets of ((())) now i think you should print off what you have posted and take to gp you are not alone so many people care val
  • helpline_team
    helpline_team Posts: 2,787
    edited 30. Nov -1, 00:00
    Hello Cris,
    Couldn't help but notice the times of your your postings. The middle of the night is often a very scary and lonely place, especially when you can't sleep because of pain and anxiety. So I hope inbetween times you've managed some shuteye and that the world is a little less frightening today.
    Can't really add much more except to say yes you've got some choices to make so why not give us a call and chew over them. And no, you are so not going to become the incontinent gibbering fool in the corner of a home.
    You have been and continue to be a source of inspiration to countless people in forumland as well as here in Helpline Mansions.
    Take care
    Paul
  • lupin15
    lupin15 Member Posts: 2,182
    edited 30. Nov -1, 00:00
    I hope everything is sorted for you soon... i just do not understand why they could not do a whole body mri scan for you? how could you be made to chose!!! Very lonely place to be ... loads of hugs...
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Val, Tracy and Lupin,

    Thanks for the hugs and yep that was a very lonely place to be....Its gets hard to listen to them discussing me in financial terms as well.... He is such a nice and kind guy yet can;t see what this 'not fiducially viable' or 'is it worth an mri as what will we do with the results' does to me.....

    I know its likely to be hopeless but don't need then to keep saying it if that makes sense?

    Hus mist deffenaqtly greatfully reciecved and many, thasnks. xxx


    Hi Paul,

    Yep I chose pain and sleeplessness and not sleep and vomit :lol: Have tonight as well but so tired i should be ok for a few hours :wink:

    Paul i cope by keeping my head in the sand and for a min someone's concreted over my sandpit....... I got a pneumatic drill on it now and nearly back to the sand.....

    Spoke to the gp.. see did do something pro-active :wink: The oxy's don't really have anything behind them she said except mst and I don;t do well on that either so we are going for the extra anti0-emetic route and hope i get used to them....

    Got used used to so many tablets now this one should be easy..... I forgive the pregabs anything cus the work and would the oxy's but I can't be sick every morning.....

    Got the scan come through... tis the 27th so they have done it quickly.

    Hey the pins and needled in the saddle area seemed to point to something..... you got anything in your books than say what that points to?

    The private route is just expensive and so ..... more sales can I can do :lol:

    I will ring but I am just too emotional at the mo... you lot wouldn't deserve it.

    Going up country soon the friend I am with that week will keep my mind off it and i get home just before the scan so that's worked out ok.

    Right pass me that chisels i am nearly through to the sand :D

    Thanks again and will ring

    Cris x
  • lupin15
    lupin15 Member Posts: 2,182
    edited 30. Nov -1, 00:00
    I have pins and needles in both hands and feet.... i have been told this is to do with my neck... i have had this since last jan last year and has not gone but has slowly progressed. started with left hand face then went to right hand left foot and then right foot... have not bothered to sort as i have no pain. I have been lucky to have neck mri which has shown oa in various disc/ prolapsed discs. i was told that this would improve and go away... this has not happened. I do get pain in my neck but this is manageable at the moment... hope you get things sorted soon...
  • CJHunter
    CJHunter Member Posts: 1,038
    edited 30. Nov -1, 00:00
    Hey Cris, just wanting to send you ((((((((x))))))))
    too.

    Her if you do need babe.xx
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    (((hugs))) to Cris, who is such a kind, thoughtful, brave and insparational person. Even my cat Izzy, loves you, so far from being invisible, you are well thought of and online cared for.

    Right here behind you , every step of the way.

    P.s. the consultant needs to learn some manners, I think you need to tell him how he makes you feel, he might be suprised :cry:
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    Cris my friend

    Only a short one, my hands wont work, typing is painful for me so that's why I've not been on. But I saw this from you.

    I wish I could take some of the awful pain away from you, I really do. I am sending you lots of big hugs,

    So they say palliative care, well they need to put a plan of action in for you then for that with outside agencies to help you as much as possible.

    I'm glad you are travelling up, PM me if you can? :wink:

    Love Janie xx
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Hugs Dear Cris, and thanks for all your help recently.

    Elizabeth xxxx
  • ruby2
    ruby2 Member Posts: 423
    edited 30. Nov -1, 00:00
    Cris
    I wish you all the love and support everyone can get to you.

    Much love I will message you if thats ok

    x
  • lululu
    lululu Member Posts: 486
    edited 30. Nov -1, 00:00
    Cris I think Susygirl summed you up very nicely I totally agree with her, You are inspirational. I don't see why they can't just do a full spine MRI they did that for me.

    I hope with all my heart that someone somewhere is able to give you some strength and support to make things a little easier for you. Bless you Cris
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    You are all so kind..... I don't deserve it but Thank you so much.

    I am at Toni's tonight on my way home...been well upcountry and returning worth Alba the demon...opps sorry i meant lamb....

    She will help keep me going and might even make me fight again.... Poss with Breagh who is going to try and steal her from me.... Well that's what she has been doing to the neighbours lambs....

    Got yet more anti emeticfas and now am not being sick so often.... the oxy's work and there is nothing behind them so I need to keep them as be honest the pain of late has been so bad.....

    Thank goodness (see all refined and not like me :oops: ) for a comfortable car as i done some miles,....

    Few more before i am home but another stop over tomorrow and only just under 200 to get home.....

    Hurts a bit but well worth it and well the demon in Toni's utility room will helpme to get the fight back injto me that's sort of missing of late.....

    I will grab a few of you to help get us home for sure and thank you all again.

    Love hugs and baaas from the horror demon thing :wink: Cris xxx

    Ruby of course you can and Elizabeth your welcome :D

    Did i say the scan is Tuesday? I wonder if they will find out what the neck is doing after... bit tired of pins ans needles or pain but lately numbness... now thqat one I LIKE :wink: The numbness is worth encouraging me thinks...... xx
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hi Cris,
    I am so pleased that you are having a couple of stop over’s on your long journey home. Oh but a little lamb as promised. What a joy, such a lucky little lamb to find you, but I take it a noisy little lamb. :lol:
    Bre will be very pleased to have a young’n to play with. I can see some comic episodes coming there. :D
    Thank goodness you changed the car when you did, proved its weight in gold this past year. Glad the meds are helping the sickness for once.

    I will be thinking of you on Tuesday, I do hope it is a good appointment and you get the results soon.
    Hang on in there Cris,
    Hugs as always,
    Lv, I x

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