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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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I know I've not been around on the forum recently and feel that I have let people down, but to be honest with the way my physical and mental health has been over the past couple of months, I would not want to impose it upon anyone, and would not have been of any help; it was like I just wanted to switch off from everything going on in my life and the world. My brother is very ill with liver disease, and spent 8 weeks in hospital with a burst stomach ulcer, and has been told he will die if he does not change his lifestyle. I am very worried about him, but feel useless as I am unable to help practically with his care, which has been left to my poor 73 yr-old mother and my younger sister.
Over the past couple of months I have been in hospital 5 times with one thing or another: feet and hands, E-coli (again) and episodes of vomiting and retching, which last for hours on end, and does not stop until I'm given a jab to stop the sickness and put on a drip, because I get so dehydrated . The doctors have found nothing, and I'm now waiting to have an endoscopy on the 12th, but suspect that like with all the other tests nothing will be found. Maybe I should be pleased if nothing is found again, but I know it is real and not something in my head! One of my enlightened carers said she had experienced exactly the same thing when she was going through the menopause, and was wondering if anyone else has experienced something similar? I am 50 and have infrequent periods, which are very heavy when I do get them.
I have had my good days when I'm able to move around quite well and when I am not in too much pain, but as I am not on any meds it doesn't last for long. I have been advised to go back on Enbrel later this month, but I am worried and wondering with my previous experience with drugs whether I should? My consultant said the Enbrel will also treat my pustular psoriasis, and dodgy liver, and given my previous experiences with medication, I now find myself in a bit of a dilemma.
Much love to you all and sorry for not being around,
Barbara XXXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/5/2009 Posts: 216 Location: Leicester, UK
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Oh Barbara, I was so sorry to read your post and to learn just what a rotten time you are having recently. First off - YOU mustn't apologise for not being here, but we do miss you and it's ok to come on and tell us just how rotten you are feeling. Your Mum and sister will have to manage your brother for the time being. The most important thing is to get yourself feeling better. Then, and only then, can you start thinking about anyone else. I never had sickness during my menopause, so I can't help you there. Hopefully the endoscopy will shed light on the matter. As for the Enbrel. You should always talk over your worries and questions with your consultant and rheummy nurse and then make your decision. Sadly, no-one else can decide for you. Hope things soon pick up for you. Enjoy your 'good' days and pace yourself. Are your feet any better now ? Sending you hugs and warmest wishes, Ann "I cannot do everything. I accept that. Not being able to do everything is no excuse for doing nothing." ~ Helen Keller
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Barbara, It's good to see you back on here. You've had a dreadful time these last few months and I hope things will start improving for you now. I can well understand your dilemma about the enbrel, I hope you can do what Monty suggests and talk it through with your rheumy nurse or consultant. Sorry too hear about your brother too. I didn't have any sickness at all going through the menopause. Hope the good days start to outnumber the bad for you very soon.
Love and hugs, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Barbara
I'm sorry you're having such a rotten time at the moment, no wonder it's got you down. You must focus on yourself and improving your health before you can help other people. I know you probably feel so guilty about not helping more, but really you're in no state to help at the moment.
The Forum is here to give support and help to anyone who feels in need, it doesn't matter how often you post.
I hope things improve soon.
Lyn
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 1,035 Location: in a house
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Hi Barbara How are you doing ? Well i have unexplained skin rashes as well but not as bad as yours ( as i have seen it ) But i had stacks of trouble when the menopause came . started with R.A and all the other auto imume stuff . the menopause it self well i have sailed though it no flushes no nothing just the other stuff . Which told it has came along with it . along with skin promlems i have had all sorts of rashes roseasa dermitis (Well you saw me ) may be when you are settled it might pass . Maybe look at life a other way so you don,t foucs on whats wrong only the good stuff thats happend .And think off nice things too get your mind of the bad .Try a differant hobby i have tried to grow a veg garden ha ha . With your brother get carers in to take the burden off .Its out there meaning the right care is out there . keep ya chin up Christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 585
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Hi Barbara it is good to see you back you must never say sorry we all know the pain and feeling down you are going through I am so so sorry you are having such a bad time at the moment pray you will be feeling better soon you never complain please never feel bad about having a moan take great care thinking about you Mary L
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Rank: Advanced Member  Groups: Registered
Joined: 1/5/2010 Posts: 89 Location: Mereworth, Kent
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Oh Barbara, I'm the one who is sorry - you may have noticed I've also kept away for similar reasons. I hate the way I shut myself off, but if that is our way of coping I'm sure everyone understands. Still it means I haven't been there for you, and it sounds as if you've had no let up at all. I'm also now off all my RA drugs because of my lousy kidney function - I had gone toxic with rash etc. Now been referred to Nephrology to work out what to do drugs wise. Also had a fall and bad wound so off Humira anyway in case of infection and am also waiting for endoscopy to confirm coeliac or not ( dreading having to go back on gluten!) I've had my daughter and grandaughter for 3 weeks which is a good distraction and wonderful, but....! They go back on Thurs Thankyou for touching base with everyone - will be in touch properly at end of week xxxxxxxxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Thank you all so much, the feet are still bad and new crops of spots keeping coming up, oh Chrissie how I wish I could get a new pair of feet!
Alison, just seen you browsing my thread and have also been thinking of you as I know you have been having a bad time too, how are things now, are you still on the Humira, and is it still working?
I just wish I could do more, my mum and sister are here with me now cooking a lovely roast lamb, which I am hoping I will be able to eat and keep down!
Ann and Doreen, I will discuss going back on Enbrel with my rheumy, it was her suggestion that stay off it for a while because my immune system was not coping and was coming down with a lot of infections. I feel that I just couldn't cope with another set back/ reaction to a drug; hence my ambivalence.
much love,
Barbara XXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Alison, just posted and please don't worry, I know "out of sight is not out of mind," and you and other people on the forum, who I know are poorly too, have been very much in my thoughts. I am just fed-up with it all and do not want to subject people to my negativity. However, I do like to hear from people who are doing well, and managing to cope with the disease as it does give me hope, makes me feel better, and like to learn from others.
will try and call tomorrow,
much love,
Babara XXXXX
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Barbara
I am pleased you have been in touch, and so very sorry to hear that you have been going through such a terrible time, in all directions. There is not much I can add to what has already been said, I just hope you turn the corner very soon. I can so understand how you feel with the family, but I m sure your brother knows too, just how ill you have been. You must certainly never feel useless, I m sure you are a tower of strength, in your own way, to your mum and sister.
Thinking of you, Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Oh Barbara- you must never ever say sorry on here. We all understand and sometimes we all need a break from things. I'm not on as often as I used to be for various reasons but it doesn't mean I forget people and what they are going through. Sometimes our mental and physical reserves are stretched to the limit! YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 1,035 Location: in a house
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Hi Barbara i know how your hands feel as i have had something on my hands .You could pop on latex gloves on quickley to do things but don,t wear the powder sort and don,t keep them on for ( less then 5 mins ) I had the top layer of skin come of my hands . Your brother and his care Could your Brother do a lot of his care ensead of saying my sister mother will do it ??? He could sort his personal care out He could think how his clothes could be washed bed changed ? Housework is done ? And how his food gets in the cuboard . He could get the care in him self and may be sort out simple meals like a bowl of corn flakes mico meals order witsure farm foods e.t.c He could do all of this by speaking to someone .On a chair on a p.c phone Or your poor mum and sister will be run of there feet . and it will be less for you too think off . Keep ya chin up if you cant walk use a wheelchair and get out and about . love Christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 1,035 Location: in a house
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barbara-o wrote:I know I've not been around on the forum recently and feel that I have let people down, but to be honest with the way my physical and mental health has been over the past couple of months, I would not want to impose it upon anyone, and would not have been of any help; it was like I just wanted to switch off from everything going on in my life and the world. My brother is very ill with liver disease, and spent 8 weeks in hospital with a burst stomach ulcer, and has been told he will die if he does not change his lifestyle. I am very worried about him, but feel useless as I am unable to help practically with his care, which has been left to my poor 73 yr-old mother and my younger sister.
Over the past couple of months I have been in hospital 5 times with one thing or another: feet and hands, E-coli (again) and episodes of vomiting and retching, which last for hours on end, and does not stop until I'm given a jab to stop the sickness and put on a drip, because I get so dehydrated . The doctors have found nothing, and I'm now waiting to have an endoscopy on the 12th, but suspect that like with all the other tests nothing will be found. Maybe I should be pleased if nothing is found again, but I know it is real and not something in my head! One of my enlightened carers said she had experienced exactly the same thing when she was going through the menopause, and was wondering if anyone else has experienced something similar? I am 50 and have infrequent periods, which are very heavy when I do get them.
I have had my good days when I'm able to move around quite well and when I am not in too much pain, but as I am not on any meds it doesn't last for long. I have been advised to go back on Enbrel later this month, but I am worried and wondering with my previous experience with drugs whether I should? My consultant said the Enbrel will also treat my pustular psoriasis, and dodgy liver, and given my previous experiences with medication, I now find myself in a bit of a dilemma.
Much love to you all and sorry for not being around,
Barbara XXXXXX I had a tube put down .Theres nothing too it expect the thought if its done while you sleep and you won,t rembember a thing if they use dizapam The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Barbara, nothing more to add, brilliant advice given already, just to say sorry you have had such a bad time, and please dont apologise for not being on here, you are allowed to be ill!! I haven't been on much either for various reasons. I hope things improve for you, especially regarding the meds. I hope the endoscopy can give some idea of the problems. I had one a few years ago, and like Chrissie says, you don't re member much!! Anyway, thinking of you, and of your family too, you can only do so much to help, they already know that x xBARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Sorrry Barbara to hear you have so many troubles with yourself and family . I know these stresses worsen the RA s well.
Everyone above has given a lot of good advice. Take care
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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 Hello lovely Barbara how lovely to have popped online to see you aww no need say sorry,know you been threw alot hun gentle hugs. do have chat with rheumy nurse/doc re fears over enbrel. wishing you well for the right treatment to suit you,so sorry hear of your brother your in my thoughts. ive been busy,got myslef voluntary job part time forum moderator for a lupus site just started,still doing maths course almost at finish line. few set backs re coming off mtx asbcess for 3 months now sinus infection,on antiboitics and got pus rash on belly seen gp al under control.but hey ho silly constant ulcers in mouth,nose thats lupus for e lol. planning hols to africa for october and hubby got acepted to be sports coach. doing okish on planequil lupus rashes alot better,ra some moments mini flares nothing major sweling up with heat so once infection gone maybe depo shot see how goes. take care lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Barbara, Sorry to hear you have been so poorly, and having very heavy periods on top of everything else must really pull you down. Why don't you consider getting the Mirena Coil once fitted it takes about 3 months to settle down and then your period tapers off completely. It remains in place for 5 years, then chances are you will not have problems after that.You will also have to watch you are not anemic if you have been heavy for some time. Hope this is a help to you, Lorna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Hi Barbara, Just to say been thinking of you, have missed you here - sending big gentle hugs and hope you soon get some answers and more support soon, Dont feel guilty about family things - just being there with a smile and to listen is sometimes the most important & best thing that your loved ones need - leave the more physical support for someone else xxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Dear Barbara
Sorry to hear abut the rotten time you're having
sending you much love
Maria x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Barbara - so sorry to hear your news - and your poor brother too. It must be sooooo difficult for you the way things have changed so quickly for you over the last year. You strike me as a person who is always in control of things and this last few months must have been devastating for you. I hope you are over the worst and things start to improve for you. I fully understand the guilt you are feeling. My mum has been in a pickle and I haven't been able to help as much as my sister for various reasons. You really are too ill to be worrying about this. I'll be thinking of you and hoping the endoscopy results are good.
Julie xxxx
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