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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi all,
Sorry not been on much again but I have ground to a halt. Even the sexy zimmer frame is not really doing the trick in doors and I am unable to move. The GP has written and rung rheumatology for some direction and I have written a firmly worded letter. Bless him, he rang last evening just to check how things are. Nothing he can do mind you!
GP says if there is no response then it is PALS.
I am too poorly for this!
I am presenting on saturday morning, all about our social enterprise bid so have given every moment I can to producing materials for this (sat with laptop praying I dont have to move!), Michael and Bernie have been ill with a flu like virus so even with the wonderful help of my PAs it has been a very tough week.
I am trying not to drink too much as then I need the loo and scream all the way there.
Not good.
I know there are not any answers. This is one of the very few places where I feel able to talk about this.
Jenni xx
PS Legs up today, hoping I will be able to get into my car and drive tomorrow morning!how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jenni
Your GP must be really pulling his hair out - hope he isn t going bald as that won t help !
What s going on about the Abatacept ? I thought you were just waiting for the green light to go ahead. I think you need to get in touch with PALS as a matter of urgency really and hopefully with their support this terrible situation will get resolved and progress made. I hope all goes well for you on Saturday with your bid.
Julia xx
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Jenni,
You really do deserve better than this, terrible that we have to push and push and even complain before anything is done.
Chin up.
Anne x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Hello Jenny, sorry you are in such a state, I wish someone would invent a foating chair. Imagine that, being able to push buttons and be lifted up and float to your way into the car or the bathroom. Me and my imagination. Not much help to you right now. I think you have worn those boots out so I hope your GP does manage to do something for you. Good luck with your presentation goes well and that you manage to get there.Thinkingof you, you brave lady. Love Glenys. x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Jenni
So sorry to hear that you are so poorly this past week and that you
no further forward with the Spec.
Thinking of you
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Good luck today Jenni and really hope your feeling a bit better love Ceri x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Good Luck for tomorrow Jenni. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Jenni, hope all went well today. Sorry to hear things are so bad for you x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Radical, I know, but is it time to go to the papers with your story abut lack of treatment
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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Dear Jenni, I hope you improve/get treatment sorted out soon. I felt so sorry to read how very poorly and in pain you have been. I know what you mean about "dreading" going to the loo. I get like that some evenings when the R.A is flaring and knowing that the loo is up a flight of stairs. Best of luck, Fiona 
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Hi Jennie,
Sorry to hear about the pain you are in. It sounds like you have a great GP, but your rheumy team need stringing up. Is there anyone besides the GP who has the time to act as an advocate for you? you are just not well enough to take this on, maybe Jean's idea of going to the papers is worth thinking about? Is there anyway NRAS could intervene?
Hope you were well enough to do the presentation? and if so that it went well?
Love
Sheila
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi all
thanks for your kind support.
the rheumatology team have graced me with an emergency appt. It is on friday.... which means it is the SHO/ Registrar clinic and they wont be able to help much.
mind you one of the registrars is a nice looking fella! 
he is a good one, but as with all these things you need to see someone with POWER and they have none.
At least they will have a look for themselves at the dire state of things...!
Jenni xx
PS Think levitating chair is a great idea.how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Glad you have an appointment booked Jenni. Sorry you are struggling so much. Let's hope the good-looking Dr brightens your day with more than just his appearance and can come up with something which will help. Thinking of you xx Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Jenni,
Hope your appointment brings some GOOD news for you, I feel for you in pain.
Take care and look after yourself and hope the kids are better soon too.
Lorna xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jenni,
just caught up here,
really sorry to hear how badly you're struggling right now.
i hope you get a good appointment with plenty of time to try and get you to something " normal " well as normal as normal can be with this awful diesase.
do let us know how you get on,
take good care
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Jenni
I hope you get something sorted on Friday, hopefully they will let you see a consultant that day once the SHO/Registrar seen you. Somethings got to be done to help you asap. You can't/shouldn't be left like you are in so much pain with nothing being done to help you.
If all else fails I would consider ringing/writing to your local BBC Radio station. It may then in turn be taken up by your local BBC TV station. May make them at the hospital sit up and do something.
Don't forget to put your RED BOOTS on!!!!!!!!!
Love Paula x
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Rank: Advanced Member  Groups: Registered
Joined: 1/3/2010 Posts: 44 Location: Horsham, West Sussex
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Hello Jenni
I'm sorry to hear that you're having such a rough time. I hope your hosp appt goes well on Friday and that they can give you the proper treatment you need. Good luck!
Kathryn
xx
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi Jenni - how did your presenttion go?
Hope you have a good day and good luck for Friday xx Ailsa
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Rank: Newbie
Groups: Registered
Joined: 2/8/2011
Posts: 5
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Ask the SHO / registrar to check out their thoughts with their supervising consultant if you are unhappy with their treatment plan. They have to have someone they can call and will know that. Hope it goes well.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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