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Date: 14.09.2011
From: marlene

Subject: Hi Everyone

Just thought i'd post a forum message. I'm not selling LOL. I have had a rough couple of weeks but yesterday and to-day i have been able to reduce pain meds YEAAAAAAAHHHHHH. I hope it stays this way for a while i don't like the brain fuzz that comes with the pain meds. Being 60 the brain is a bit slower anyway LOL i'm joking.My brain is fine i think, i expect family and friends might disagree.
Took two of my grankids on the London Eye and did a River Cruise, I did get real cold on the boat trip i said to my other half at the time i bet i pay the price for this. It seems i did. To see the two faces of fear and then sheer excitement of the children was absolutely worth it. We have to carry on its no good saying why me??? Why not me??? I like the rest of you have been dealt a card and we have to play it the best we can. I have a good network around me I still get to do stuff on my better days and when i'm not up to it i curl up with my best friend (hubby) if he's not around the dog never gets fed up of my moans, she wags her tail i smile and job done!!! I'm posting to you my thoughts to-day. Firstly because i feel a little better secondly i have a bit of free time and thirdly this is what this forum is for. I love chatting to all you guys and girls' you never judge me, you always make me feel good when i'm fed up or hurting. Enough said!!!!!!!!!! You all take care and have a good day X
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Date: 14.09.2011
From: rachel

Subject: Re: Hi Everyone

sounds like you had a nice weekend i bet the children enjoyed it. My husband is in the 6th week of a horrible flare up,saw the consultant yestoday whos changing his mtx to injection instead of tablet,added another dmard also sending him for joint injections and perhaps corrective surgery on his feet, so things moving again just not good for a 41 year old who has everything going for him. Anyway moan over,have a nice day marlene and keep ya chin up x
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Date: 14.09.2011
From: marlene

Subject: Re: Hi Everyone

Sorry to hear your hubby is having a rough time of it. Hope the joint injections help, i have oa but i think not to sure the joint injections i have must be similar hope they work for him. I do get relief from them. The surgery side of it is not so great for anyone, at 35yrs i had surgery to my elbow it has been fantastic ever since fingers crossed (i say that loosely). I had back surgery coming up two years ago although it helped with the leg and hip pain my back pain still through the roof at times. I guess we do learn how to deal with it all. If the surgery is the last resort my experience go for it!!!! Tell your hubby i'm routing for him. Best of Luck and take care x
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Date: 14.09.2011
From: bsk

Subject: Re: Hi Everyone

Hi Marlene, there's nothing wrong with your brain lol! Glad to hear you've had a good weekend with gkids, they will remember that!
I've been struck down with a stomach bug that won't go away grrr! Downside of anti tnfs (and, just in case you are poking your nose in wd, I am fully conversant with what my drugs are doing to and for me!) However, my joints are good.
Keep your chin up Rachel, it will get better for your other half.
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Date: 14.09.2011
From: willis

Subject: Re: Hi Everyone

how lovely to hear your news marlene, i always read your posts cause you keep me and others going, bet you dont' even realise it lol. i went to a party on saturday and danced for 3 hrs and some and haven't done that for years - had a steroid injection 3 weeks ago and finally started kicking in so took the opportunity while it was there - feels good eh :)
BSK - what is tnfs short for - i don't understand half the abbreviations people use here as new to all the meds as wasn't diagnosed for years despite family nagging. denial i think it's called and hindsight is should have listened
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Date: 14.09.2011
From: bsk

Subject: Re: Hi Everyone

hi Willis, aren't the steroids great? I'm envious of the dancing!

Tnf is tumour necrosis factor, which causes the inflammation and other things that go with the condition. Anti-tnfs inhibit the factor. Some are called biological drugs, think they are the same, or similar, with variations between them. I take Cimzia by injection every two weeks. What are you on?
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Date: 14.09.2011
From: davina

Subject: Re: Hi Everyone

hi marlene sounds like you had lots of fun.
i am always here for you, having young kids around you tier you out sooo much daily but its worth every moment watching them enjoy it.
you also are here for us too so thank you for listening and reposting to us
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Date: 14.09.2011
From: rachel

Subject: Re: Hi Everyone

Thanks marlene and bsk x
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Date: 14.09.2011
From: marlene

Subject: Re: Hi Everyone

Hi BSK sorry to hear about the bug hope it gets better soon. Good the joints are okay. Hope it stays that way for you x

Willis, wow good on you keep it up partying but don't overdo it LOL I'm only jealous Take Care x

Davina thank-you for your post i know you are there for me i feel all you guys are. I am glad that you know i'm there for you also.My Grandson is nine and hasn't stopped telling anyone he can about the London Eye so all the pain after was worth it. My grandaughter is 12` far too old to tell it like it is so she posted on facebook to all her friends. Bless her. Take Care everyone Keep smiling X
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Date: 14.09.2011
From: bsk

Subject: Re: Hi Everyone

Thanks Marlene, I lurch from one crisis to another, getting used to it now :)
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Date: 15.09.2011
From: Dilizjo

Subject: Re: Hi Everyone

Hiya Marlene great to hear you have had a good weekend... I too am enjoying a couple of days with my little Grand angels:) the best medicine around:)
All take care xx and ty you all for being here xx
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Date: 15.09.2011
From: willis

Subject: Re: Hi Everyone

Hi bsk - well i was in agony for 6 months then docs then consultant - so now on 20mg mtx every week, 400mg palaquinal (or however spelt) every day. had a flare up due to infection (OMG what was that kind of thing) so at last cons appt he gave me the steroid inj. to go back sat to see how i am but given i had steroid jab i'm fine now - when that wears off i'm sure i'll go downhill again, he says he will monitor closely then adjust meds when needs be. watched mother suffer for years (over 30 yrs ago) had the signs but ignored them, but eventually it got me - think triggered by family tradegy 18 months ago. adjusting has been well difficult as one day better than next etc so still feeling my way round it - gp advised forum as sufferers advise better than she can! and she was right. :) x hope your feeling bit better today x
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Date: 15.09.2011
From: bsk

Subject: Re: Hi Everyone

hi willis, your story sounds quite similar to mine.I actually got ill a few weeks before my mother died. That was a double whammy.

Yes, I up my steroids and feel better and take my anti tnfs and they work, then I get an infection and have to stop everything for a few weeks. It is becoming a pattern. It is very difficult to deal with but I have been learning about meditation and done a course and about to start another. When I can manage to do it, it helps, but it is hard. And NO! I am not selling a book; haven't got a website; don't run the courses myself; am not evangelical about it - ha ha - I am just someone trying to find something that helps me cope. I am getting more relaxed about things but it is tough to deal with the ups and downs of this illness.
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Date: 15.09.2011
From: marlene

Subject: Re: Hi Everyone

Just been reading your posts Willis and BSK. I also began falling apart health wise after my Dad passed, firstly OA flares were constant, then i started passing out and had a pacemaker fitted after a five minute consultaton with a great Heart specialist for ever grateful to that man. Then my slipped disc became so severe i needed surgery. It felt like my whole world was falling apart. It wasn't im fixing every day. I have come to the conclusion we become stronger each day!! Meditation is my daughters thing, so i say good for you!! Sometimes when i post it feels like im writing a book (only because my hands are so painful LOL ) This is a tough card to play, each day is unpredictable and we have to play it all by ear as the saying goes. But at least our days are never the same so we should'nt get bored should we haha. Well take care best wishes!!!!!
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Date: 15.09.2011
From: bsk

Subject: Re: Hi Everyone

thanks Marlene, you sound like you've been through it. Stress certainly doesn't help the condition.
I hope I can keep the meditation up, it's hard to do it on your own.
take care
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Date: 15.09.2011
From: marlene

Subject: Re: Hi Everyone

I am sure you will keep up the meditation you seem a determined person to me. It is hard on your own, but even with people around it can be hard so keep it up, wishing you luck with it. Yep its been a tough 7yrs but i am coming out the other side now. It was just one thing after another when all this was going on my mum broke her hip bless her and had it replaced. They tried to send her home to me five days later. There i was on her ward displaying my war wounds on my back to try to make them understand i cant lift her. What a sight LOL. Anyway less of my drival you take care and by the way its a great forum X
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Date: 15.09.2011
From: willis

Subject: Re: Hi Everyone

My husband always promised that life with him would be interesting- think i turned the tables a bit lol, i saw a post BSK - earache - yep went to docs with that before the RA diagnosed lol, all part of it. The difficult part is knowing is this ache or pain all down to RA or is it something else, like the infection - thought the symptoms were part of the RA - so the most difficult part is doing my best not to become a hypocondriac lol, i'm doing panto this year and damned if i'm going to let this stop me, i'll crawl on stage if i have to :) i would never have thought that bereavement could bring on such an illness or any illness come to that to be honest but we live and learn and quick lol :) xx good to talk to you and marlene - keep going and living life xxxx
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Date: 15.09.2011
From: bsk

Subject: Re: Hi Everyone

Tell me about it Willis! (the hypochondriac bit) I've just had a stomach bug, at least....I thought I did, but then I thought it might be side effects of drugs, then thought earache was infection, so on and so forth.

Marlene, thanks, I will try and report back :)

I'm sorry any of us have this wretched illness but am grateful for this forum.
take care xx
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Date: 16.09.2011
From: marlene

Subject: Re: Hi Everyone

WOW panto you go willis what a laugh!!!! I bet that is fun. What panto are you doing? Its real nice to hear that we all do our hardest to not let this arthur thing stop us doing the things we love in life. Panto, meditation, dancing,gardening and all the other things people still do. I say good on all of us.Im not forgetting you guys who work and are bringing up your children and running your homes. We all desewrve a pat on the back, not going to let it get to us are we guys?? Take care X
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Date: 17.09.2011
From: willis

Subject: Re: Hi Everyone

morning marlene, Its Robinson Crusoe we're doing, only amatuer of course, i'm Robinson!!! a sprightly 45yrs old robinson lol. but it's good fun and keeps me out of trouble lol
i fully agree with this keeping active and again all depends on how we feel on any one day. but onwards and upwards as they say :) you all have a good day xxxx
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Date: 17.09.2011
From: davina

Subject: Re: Hi Everyone

willis sounds fun, keep up the good attitude you have. lol what trouble do you get into? lol
take care.x
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Date: 18.09.2011
From: marlene

Subject: Re: Hi Everyone

Oh smashing i hope it goes well on the day!! Sound real fun.
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