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Same old things......

skezierskezier Posts: 12,150
Hi helpline folk,

Should have done a sale today so I had enough credit to phone you but.... tis cold... i hurt and tis very cold oh and had acupuncture yesterday so pick an excuse why i am sat here and didn't go. :roll:

I got a few things and just wondered what i am supposed to do about any of it really.....

We have a useless trust, one (and its only the one) fairly bad hospital and no chance of going to to another county... less you have head injuries or spinal surgery or ca actually ca cus they have stopped doing that as well...

Anyway got oa and pa as well as acrocyanosis and secondary raynaud's. few other things but your lucky they don't come under the umbrella of arthritis :lol: Your lucky eh?!

I have been thrown away firstly. Told the mtx has to work cus i wont get funding...... the mtx is now up at25ml, i spend 2 whole days throwing up, I can't have injections cus they cost more and so far its not helping. The 'plan' is to see in April if its helped and if its not go back to 20ml and palliative care only......

My necks got narrowing, bulging and dehydrated discs (only 3) its got both kinds of spondy and it hurts! the lumber is shot and has been for years.... it also hurts but apparently i cope very well with it...... good let out there for them eh?! Could have said just as well......

They wont refer me to an ortho cus 2 consultants and a physio say the necks not worth operating on... its unstable and if was theirs they wouldn't let anyone touch it. Well i one up on them then cus I am letting them stick needles in it!

The neck has had 2x chemical denerves... one lasted 5-7 months the other 9 weeks so I am not a suitable candidate for cryo, permanent or electronic implant...... can I again say it hurts? Physically and emotionally. Tis the end of the road.... fair enough if it was just oa......

The pa is not under control and never has been. Got slight erosion now in the wrists.... the physio told me it wasn't much so not too bad and i sat there thinking it does rather depend on if they are your wrists actually....... :lol:

The mtx just isn't showing any sign and I already reacted and came of sulfa which didn't show any sign of working either so some consolation i had to came off it!

Can I insist on applying for funding for an Anti-tnfs? Mind do the anti's work at all?! I would like it in writing there's no money..... Do you know what the criteria is?

If I do ask for a ortho's opinion on the dehydrated or bulging discs will it annoy the rumo who has said there is no point? Or the pain clinic consultant who said no-one would touch her neck or back if they were like mine. Both of them are adamant surgery isn't an option... wonder if it could be for my wrists :roll: How about the elbows.... commonly believed to be worse than the wrists but never actually xrayed :lol: I hate this!

The there is the circulation......

i have spoken to 'she of the short straw' about an addition to my notes. 3 drips back. (I have ilopost every 4 months) Its got bad now and time to do it just to stop the sister from hell lecturing me on how hard it would be for them if they had to try.. and they'd never do it anyway...... Big run in last drip, i mean huge run in last drip!

Left me very scared of going....... well it would most people really....... honest....

Got it Monday..... If I don't have it it going to cost me some bits of feet at least maybe a lot more.

tablets aren't strong enough but worth a go if there us more agro with hell sister. Do you know how they monitor you? See if its monitored in hospital the same then I still got the hell sister telling me how difficult i am....... Besides if they don't produce the bad side effects they wont work well enough ... hell is this life?! Is this really it?

I know your not medically trained so can't answer.

Aren't you glad I didn't borrow a landline?! :lol: oh and yes there was a sheep put down last month but that's not as bad as the last one and i don't think its pushing me too hard...........

Is there any of this you can help with? Sorry its so long. I feel i should sign off Old and knackered trapped in a Catherine Cookson novel... only without the romance :lol::lol: Cris
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Comments

  • helpline_teamhelpline_team Posts: 1,835
    edited 30. Nov -1, 00:00
    Hi Cris

    It has been a long while. In most cases my next line would be how have you been? But from what I've just read that would be be plain daft wouldn't it?!! ;)

    Far be it from me to tell you what to do but perhaps you'd like to consider borrowing a landline? Though I know its cold out there. so not to worry you know we we'll be here when you are ready. (Apart from tomorrow as we are on our training day)

    I am aware of the difficulties re various things you are going through, but I was wondering if there is any possibility of inhalation re the iloprost considering the current difficulties. Maybe this has already been discussed with your team I have no idea and am probably grasping at straws but it was just a thought. If it hasn't been discussed perhaps its something to ask the sister from hell or maybe your consultant.

    The criteria for Anti TNF is that you have to have tried at least two DMARDs one of them being Methotrexate. So it may be worth fighting for the Metrx injections to start with.

    Knowing you and reading this I can imagine things are pretty off the scale in terms of how you are feeling. I would again question are your medical team aware of how bad you are really feeing as they sound quite happy to tell you how well you cope but then what are they offering you beyond that. We all know you are prone to putting on a brave face and demand nothing, is it time to actually tell them how bad it really is and ask for help in applying for the right funding for meds?

    I am very well aware of CC and the smelly icky stuff her heroines have to wade through until the knight in shining armour comes along. Hang in there, don't lose hope of them hearing your needs, but most of all remember to ASK for what you need without putting a brave face on! ;)


    (((Best wishes)))

    Simona
  • suzygirlsuzygirl Posts: 2,005
    edited 30. Nov -1, 00:00
    Cris, could you not get PALS involved. (Patient advice and Liason Service). They are usually attached to the hospital, and help to mediate between doc and patient when the patient is dissatisfied with their care.

    It seems so unfair that you are not given the chance to see other specialists, or given more effective meds. Do it now, new financial year soon!!! :grin:
  • skezierskezier Posts: 12,150
    edited 30. Jan 2011, 23:29
    Hi Simona,

    Thanks for your answer, I know none of it bar the pa and oa comes under the ac remit flower so I do mean thank you for the ideas.

    I was ahead of you over the inhalation, kinda hoped it would work but tisn't strong enough to get into the blood in sufficient quantities to help so really its the drip i need but tablets are better than the inhalation way.... still need monitoring, and here that's done by.... yep you guessed... the same ward apparently!

    Promise the rumo and the pain doc both know how much its all getting to me but say about no funding and this unstable neck thing making surgery not an option. I get on ok with them and don't want to rock the boat...... the rumo hasn't said anything to the sister and reacons since she had had the conversation she wont need to again... oh how little he knows her!

    This time I will not sit meekly curling up inside and saying nothing.... mind i haven't got a back bone metaphor or real apparently :wink: You'd think with all the extra bone its chucking up it could spare some for actual use :roll:

    I shall sit quietly and have to actually think what is right for me to do and then run with it.

    Oh I have failed so far on 2...... the mtx tablets are up to 25 so that's top for the arthritis stuff and it's not showing any signs of doing much except being an emetic...... and a very good hair thinner :roll: I will ask again about injections but they have already said about they cost more.

    Be honest i have never read a CC book but she was a nice lady......Kinda knew her to a degree back along. I was just too old to be trapped in a Dickens novel :lol:

    thanks again flower and take care Cris x

    Oh forgot to say you asked what they are offering....

    Palliative care to help with pain but nothing to try and stop the pa except the mtx..... which i have been on almost a year and all we do is up the dose cus its not working....

    The bloods are not too bad but there is swelling and redness and lack of movement in the wrists and the elbows and who knows what they are up to!

    Both wrist have erosion on the ulna's..... I don't really understand it but guess that means i really am being eaten? Hell how how hungry can it get :lol:

    Simona i am scared....... I am my way of life, i am nothing without it ... well just now I ain't much with it and hell is it being threatened. the pa had got my hands to a degree, its got my feet as like as not and I would give anything for them to just take off 2 more toes :wink:

    They have drained the elbows and injected them a few times but its just generally excepted the pa has got them as well......

    Oh Simona I am just mashed and on a scrape heap. Always knew the day would come but the pa they could help .... but they aren't going to cus i got too much wrong i guess?

    Anyway my week of hell has really stuffed me..... i so hope this time its not as bad as the last 3...... That's a flap, flap, oink as well....

    Ok i will shut up now :wink: hey maybe I could skip to the end.. cus its really a Stephen King novel i am trapped in :lol::lol: Going to try and escape to a John Masefield book,...... much better :lol::lol:

    I apologize for being a gibbering wreck..... hey maybe i could escape into a Shaun the Sheep book... would be happy in there :lol::lol:
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  • skezierskezier Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Suzie,

    thanks for your idea about pals. i did talk to then 7 year ago over not being able to get a gasto appointment with raging IBD and it made it so much worse.

    Things might have changed since then and if the sister starts up again i wont be having the drip again so will for her benefit only see them over her 'treatment care'.

    The rest funding is a huge problem........ they will be bankrupt again very soon cus they have that big a deficit..... Since all hospitals are having their budgets cut its not going to get better eh?!

    Did hear rumor today that this one will be closed completely in 5 years..... then we all go to the next one up in the next county and those are being sold to the private sector and that's not so much rumour..... leased back but run as independent businesses.... makes you wonder if the rest of the uk are in for the same. Hope not for its sake but if they do close our one we might just get better treatment :lol: take care and hope your feeling ok and warm. Cris x
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  • skezierskezier Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Tinks,.

    thanks for you answer flower... kind of bottom hitting just now but never mind..... hey the only knight in shining armour i am likely to meet will be dressed in armour made of old dog food cans and riding one of the lodgers :lol::lol:

    Talking to one of my girls tonight and well they are important and kinda need me to hold together enough to hay and water them...... Life sometimes its not that good eh?!

    Hope your okish and maybe this coming week will be better than I fear.... that's another flap, flap, oink ... the 01.08 flying pig just went over :lol::lol: Thanks again Tinks for your support... guess its no secret i really am trapped in a nightmare :lol::lol:

    You take care and leaving you a (((( )))) Cris xx
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  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    We know you are trapped in a nightmare but the humour still shines thro - I can visualise your knight! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • skezierskezier Posts: 12,150
    edited 30. Nov -1, 00:00
    Hey DD he looks good don't he :lol::lol:

    Flower for me humour is all that's left... when that goes......Cris who really must go.... xx
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