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I am home! Options
barbara-o
#1 Posted : Monday, May 10, 2010 5:28:01 PM Quote
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Hi everyone,

Well, thanks to your fantastic breakout plan and after an 11 day stint in hospital, I am now back home! HORAH. I was discharged on Friday and have been trying to catch up on my sleep as I hardly slept on the ward. Feel absolutely exhausted and have very little energy or strength at the moment, but hope this will change soon when I have learned to adapt and cope with yet another chronic condition, "Palmoplanter Psoriasis (PPP)."

It seems that the Humira triggered PPP, which is a rare form of psoriasis, which is also known to cause Psoriatic Arthritis, and I am now left wondering whether I am going to get that tooSad. To tell you the truth, I am finding life difficult, and can't help thinking where this is all going to lead. It would seem just as I think I am on the mend, able to take a drug and learning to adapt to life with RA, something else comes along, puts a spanner in the works, and I find myself back at square one again. I have now had the psoriasis for over a month and although my skin has improved, in that the lesions on my feet and hands are no longer weeping, new pustular crops have started to appear again on my hands and feet. The RA is out of control, particularly in my shoulders, feet and hands, and cannot have a steroid jab, and have to contend with taking just pain killers as the steroids cannot be given with the psoriasis, and there is also the problem with my adrenal glands to consider. I was started on a small dose of Enbrel and was told that it will also help to clear up the PPP, as well as treating the RA. Please send out positive vibes, or pray that the Enbrel works as I don't think I could cope with another bad drug reaction.

As my mobility has not improved a great deal my GP is referring me to the local wheelchair service as I am fed-up with not being able to walk far and would like to get out more with friends and family who will be able to push the chair. I do not see the wheelchair as being a long term solution, and I am determined to get back on my feet again. I have an appointment with a neurosurgeon at the end of the month to find out if anything can be done for the 4 prolapsed discs in my spine as I continue to experience a lot of problems with back pain and being able to move, sit or lay comfortably...... OH IS LIFE FUN!

Forgive me for going on a bit and wish I had more cheerful news, but felt I needed to say exactly how things are for me at the moment. In saying this - "I WILL SURVIVE!" and I am only temporarily indulging myself in a little bit of self pity before I give myself a good kicking up the "Jacksie," and get on with life again.

Alison, it was lovely to met you and will email you later this week.

love,

Barbara
XXXXXX
Damned76
#2 Posted : Monday, May 10, 2010 5:58:59 PM Quote
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Oh Barbara - what an absolutely dreadful situation to be in. I would imagine you feel 'stir crazy' by now, I can't imagine what it's like coping with the pain. I am thinking of you and sending all the positive vibes I can muster.

Julie xxx
prioryc
#3 Posted : Monday, May 10, 2010 6:36:17 PM Quote
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Dear Barbara,

I am so glad that you are home again but sorry that you have acquired another nasty to go along with the others. I hope that the Embrel gets everything under control.

You 'moan' all you like, although it isn't moaning but telling it as it is. What a good idea having a wheelchair in the short term as it will do you no good being stuck in the house.

Chat soon,

Eleanor x
jeanb
#4 Posted : Monday, May 10, 2010 6:36:39 PM Quote
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Hi Barbara

Just got back from Chester and picked up your message. Crashing out now but will ring tomorrow am (not TOO early though!)

Much love Jeanxxxx
dorat
#5 Posted : Monday, May 10, 2010 6:39:11 PM Quote
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Hi Barbara,

I hope you are going the whole hog and are tucking into chocolates and wine as well! You deserve it after what you have been through.
Glad you are home now and hopefully getting lots of sleep.
I really ,really hope the enbrel continues to give you no problems whatsoever and turns out to be your wonder drug!
Lots of love and hugs,
Doreen xx
Calmwater22
#6 Posted : Monday, May 10, 2010 6:46:59 PM Quote
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Hello Barbara glad your home,sue you need good sleep and good news,postive vibes from me to you,that the enbrel works wonders and doesnt give a reaction.so sorry see how difficult things have become,good idea re chair as temp measure till things more moveable.
hugs.
melly
cuddly cats make my world seem so much more fun
Glenys-H
#7 Posted : Monday, May 10, 2010 7:52:08 PM Quote
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Hello Barbara, I hope and pray that the Enbrel helps. try to rest up and charge your batteries. Glenys. x
Maria_R
#8 Posted : Monday, May 10, 2010 8:21:58 PM Quote
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Dear Barbara

Just picked up on this. I'm glad to hear you're home. My heart goes out to you- I hope you find solutions and relief soon.

Much love

Maria
lizziemouse
#9 Posted : Monday, May 10, 2010 8:39:27 PM Quote
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Hello Barbara xxxxx

Positive vibes and great big hugs from us too, Doreen's right - make sure you treat yourself a little or even a lot, you deserve it
and then hopefully get some good rest too,

Hoping and praying that the enbrel works for you and you get some relief and the RA can be brought under control for you xxxxx

& Dont think of it as moaning, more of a battle cry

You are a strong lady, i know you wont let it beat you
and never forget you've got your forum army right here besides you xxxxx
Kathleen_C
#10 Posted : Monday, May 10, 2010 9:35:38 PM Quote
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Hi Barbara - and WELCOME HOME!!!!!!!!!!!!!!!!! I knew we`d get you out once we had a proper plan!

I`m so sorry that you have yet another "condition" to put up with, and truly hope the enbrel will do the business for you. I have my fingers well and truly ( and metaphorically ) crossed for you.

I think your spirit is amazing, and I`m certain the wheelchair will only be a temporary measure. I was in one for a while, and like you, desperate to get out and see the outside world again.

Have yourself a good rest, some goodies to eat and drink, and here`s hoping enbrel will be the drug for you.

Take care,

Kathleen x

chockers
#11 Posted : Monday, May 10, 2010 10:45:10 PM Quote
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Hi Barbara
Welcome home .

Well thats what i say about a wheel chair i can go out .
( i have one ) Yes i used one when i had a bad flare up and was on no drugs .
Have you thought of looking in the paper mine was new £50 just brought so someone could go to a party used once then he died .
cost over £100 new .

Also shop moblity gets you round the shops to the cafe .

Did i tell you i might have p.a ??/Have a double app tomorrow for re testing about tests rashes and such like .

they thought i had P.a in the winter not sure now may a mixure of things .
I also know a lady whos feet and hands looked like yours maybe not as bad but bad she could stand and hobble .
She now has P.A Her feet have the p .rash on them and on the bottoms of feet .

love Christine nice meeting you at Lecister
The chocolate eating housewife ...The washer woman .....naughty lady
amanda_lewin
#12 Posted : Tuesday, May 11, 2010 12:08:34 AM Quote
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SOOOOOOOOOOOOOOOOOOO pleased you're home and have been thinking about you all day but wasn't able to ring..I will ring you tomorrow (well today now!) as I can't wait to speak to you...

MUCH love always...

Amanda
kells34
#13 Posted : Tuesday, May 11, 2010 8:41:19 AM Quote
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Such good news that you're home, it's always nicer to be in familiar surroundings.
Take good care of yourself
Hugs Wub
Kelly x
joeyvt
#14 Posted : Tuesday, May 11, 2010 9:08:36 AM Quote
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Hi Barbara,

It never rains but it pours! You poor thing ... it all sounds so awful and I'm not surprised it's shaking your usually steadfast resolve. That's what's so horrendous about RA ... it isn't just one thing, it's a whole pandora's box of goodies that pop out just when you've gotten used to the way it was.

I'll be crossing fingers (ha ha) that the enbrel does the trick.

x x x
Joanna
Jan
#15 Posted : Tuesday, May 11, 2010 9:53:27 AM Quote
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welcome home.

lots of rest and TLC, hoping you feel miles better very soon.
Jan xxx
lyn2
#16 Posted : Tuesday, May 11, 2010 7:51:35 PM Quote
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It's no wonder you're feeling so low, you have so much to contend with. I hope the Enbrel helps, I'll be thinking of you and sending postive vibes to you.

Lyn
Alison-CD
#17 Posted : Tuesday, May 11, 2010 8:05:22 PM Quote
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Location: Mereworth, Kent
Hiya,

glad you are safely home where you can lick your wounds and regroup in peace. It is good to hear you be fed up, frustrated and cross - better out than in and once out gives room for the postive vibes we are all sending you. I am beaming mine to you right ----NOW Scared xxxx
MaryLewis
#18 Posted : Tuesday, May 11, 2010 8:58:46 PM Quote
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Hi Barbara
so glad you are home safe and sound
now take it easy for a few weeks
Mary L
Rose-B
#19 Posted : Tuesday, May 11, 2010 9:18:08 PM Quote
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Location: Somerset
Hello Barbara

Glad you are home - Take it easy no stripping wall paper and glossing the paint work

Rose ThumpUp
LynW
#20 Posted : Wednesday, May 12, 2010 9:04:41 AM Quote
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Location: Thornton Cleveleys
Morning Barbara

You have been in my thoughts often even though I haven't posted much. I do actually have your email address but don't want to be a pain filling up your inbox!

What a time you have had ... but so glad to hear that you are home again. Fingers crossed that the Enbrel will help, it has certainly been a very effective drug for me over the last 7 years. So here's hoping success for you.

Hope Chris is okay Smile and car repaired.

Lyn x

PS I dropped you a line whilst you were in UCH but I suspect that will be chasing around the hospital from ward to ward looking for its rightful place LOL
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

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