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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Huge and horrid flare following some better days after the mega pulses.
I have been in bed full time and struggling
got to the point of I must ring the dr when I just couldnt swallow
she came and kindness made me cry (soppy I know) but she cant give more steroid without hospital input
Hospital saw me friday and wanted me IN
Oh noooo not IN!
AAaaaaaaaagh!
so have shuttled off... when I calmed down!
not in hospital over christmas surely not nooooooooooooo
so I have agreed to "try" oral steroids 4 x normal dose
My BMs are mega. But I have to be able to move...
But I dont care- not into hosp over christmas surely?!
Noooooooooooooo
Going to ring for my blood results- brace yourselves...!
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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oh lordy it was the grumpy one "you MUST have your hospital number before ringing" well I dont... SIGH ring back later with it then.... cant you just look it u... BOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOp goes the disconnected sound. I ring again.... CRP (sharp intake of breath) 106 eeks how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Hmmmmm- so what happens now? Why oh why can't they just look at your hospital number which is on the computer in front of them ?!? YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Jenni,
No, no, no! They must find a way for you to enjoy Xmas with your family.
Had a little jolly today out for lunch and bumped into somebody I met earlier on in the year who has a heart condition which means she could drop dead without any warning at any time. She had a valve sorted out in October and ended up with septicemia after the op so has been on mega antibiotics ever since and today was her first day out. They wanted to keep her in until middle of January but she put her foot down and they have left a line in and she just goes back every day for the intravenous antibiotics.
So there probably is a way they can help but its either too much trouble or doesn't fit in with their flaming guidelines or something, grrr.
Keep stamping your feet, even a tantrum might be in order?!
Take care
Sara
x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Will ring when Berny is in bed xxxxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 262
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Thinking of you Jenni.
I'm sorry you didn't get longer benefit from the pulses.
Hope upping the oral steroids calms things down pronto.
Diane x
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Jenni - Sending loads and loads of hugs and prayers.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Jenni loads of hugs and prayers from me too. I hope you have a lovely Xmas with your family, sometimes these hospital staff should show a little more compassion, you are one amazing lady to always be smiling when things are so hard at times for you. I wish you a reprieve in the New Year, things HAVE to get a bit better for you, you have had more than your share. Have a wonderful Xmas Jenni at home with your family. Lots of love Lorna xx 
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Jennie
Just to say I am feeling your frustration firmly. I do so hope the steriods work quickly and effeciently
Take care my dear
Rose
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Morning all!
I am sat on my bed- running Military style "Operation Christmas" from my bed...!
Thinking good resting thoughts and doing BUSY.
(Well trying to manage as best I can anyway)
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Thinking of you Jenni.
Hope the steroids help you .
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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thinking of you as well Jenni,
really hope that you get some relief soon,
i think you're spirit is amazing,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hope the steroids work some Christmas magic for you, Jenni. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Jenni, I couldn t face trying to go Christmas shopping and I just love the online shopping thing, you can get all the reviews from happy shoppers which is brilliant - a couple of clicks and bingo and you are there  Besides buying all my presents, and there have been lots of sales on too, I treated myself to some lovely sheepskin mittens from Amazon, very happy and so are my hands now ! Julia xx
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Rank: Advanced Member
Groups: Registered
Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
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Jenni,
Sending you my thoughts and best wishes. I hope the Drs and Nurses are great because you are an inspiration to me. Such a strong woman, who doesn't let this damn disease get you down! Just how do you do it?
Lxxx
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Any more news Jenni? I keep thinking about you, little Bernice and the rest of your family. I hope that you will not have to spend Christmas in hospital. If it does come to that then as long as your family can be there for at least part of the day it will still be special and precious. I know it sounds corny but I just wanted to remind you what an inspiration you are to others on this site. Reading your posts has given me strength and I admire your determination in fighting this disease like a true warrior. X
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 346
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Hi Jenni hope you don't have to go into hosp for xmas. Can just imagine you doing operation Christmas from your bed at home!
Bevxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Yesssss end of weds and still no admission!
Very pleased at that!
off to do a surgery post though- the knee chopper has seen me for a hacking!
Jenni how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, so glad you are still managing to stay out of hospital. Let's hope you keep going this way. Thinking of you and all the family, have a wonderful Christmas, sending lots of love and hugs x x x x BARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Glad u held out Jenni and are at home. Good luck. Off to read about your knee adventures now xxx
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