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Rank: Member
Groups: Registered
Joined: 3/16/2011
Posts: 24
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hello all i was diagnosed with seroneg RA 2 days before last christmas. Struggling along,nobody really wants to hear how i feel,hubby has tried to be supportive and has helped with day to day housey things,but it is the emotional side and chatting i crave. My kids are almost 13 and almost 16-girl is almost 16 and has been advised of what it is all about,but cannot really get to grips and i want her to be protected from some of it as she is in middle of exams. My mother has been good,but lives 3 hour journey away which exhausts me,father never contributes emotionally and my sister,ignorance is bliss i guess. many friends have slipped back into woodwork,mainly i think due to ignorance too..i have tried the sit them down and gently approach subject with all,but to be honest,as soon as you say arthritis they think of the wear and tear...people do not understand at all... I have a reasonably good rheumy,but no rheumy nurse or contact when things get bad. I am taking hydroxychloroquine tried metho but got really sick so stopped.Week 4 of hydroxy now.2 flares since diagnosis-full blown flu like and pain ++. Now,so so,fingers always tight and painful and find i cannot grasp as well as i used to and am a bit clumsy etc..i guess this is normal? I have had bad cough i do have mild asthma so have increased the inhalers but also a wierdo hearty flutter wobble thing too..i read rheumatoid can affect lung/heart? Please help me,i feel so alone and people assume as i am a nurse i know everything,but i have to say ra was never really dealt with in my day to day. possible trigger to RA was my beloved grandmother dying and a couple of very upsetting experiences last summer. thank you so much for reading this and just writinf this out has helped i think. regards vicky x
If at first you don't suceed,try then try again..:-)
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Morning Vickie Gosh, I so feel for you. Everything you are saying is so true to form with this dratted RA. It is so difficult for people to understand how we actually feel. The energy sapped from you unable to keep appointments etc. I really understand as happens to me. Partners etc. yes they try to understand, but still think you should be able to cook the tea do shopping ironing etc etc. and still go out in the evening. No not at all. I really have to pace myself now if out in the evening I try and have a quiet day. Do not be lonely this site is excellent for getting something of ones chest or just to experience the company. Summer on its way and the weather will get warmer which in turn does make us feel better about ourselves, even though in mid Summer too much heat does have the opposite effect . ha ha. Chin up and keep posting Vickie 
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Vicky,
Like you when diagnosed last May I felt so alone and frightened about the future.
I quickly found this site and honestly to be able to talk to people who have been there done it and got the t shirt helped me enormously.
Just come on here and share your concerns you certainly won't be alone for long.
Keep posting.
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi Vicky!
nice to "meet" you on here- it seems you are juggling a lot at the moment and the RA is the last thing you needed.
I dont call my condition arthritis at all. I tell people I have an immune disorder.
It stops all the "oh my great aunt had that in her toe once" or "I have a bit of that in my hip".
I would also recommend you have a look at this website and download the spoon theory.THE SPOON THEORY
I would talk about the RA with your important people- which includes your children. They cope better IMO with all the information to hand. NRAS have some good literature to give to family and friends.
As for flairs, it sounds like the RA just isnt controlled and that is miserable! I will push a thread about this to the top of general discussions board for you.
With your hands- dont force but try and put them in hot water, as hot as you can bear without scalding in the mornings and gently ever so gently move them in the water.
You need to see an occupational therapist for a full assessment- 1) splints 2) practical aids 3) energy conservation.
There are several Mums on here, I have 3 children- my son is 15 and doing his GCSEs. my 13 yr old is in a special school and my 3 yr old is errm! 3!
I am Jenni, 35 yrs, severe RA married to the long suffering Richard!
Anyway- we are ALL on YOUR side. Keep Posting!
Jenni xxhow to be a velvet bulldoser
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Rank: Member
Groups: Registered
Joined: 3/16/2011
Posts: 24
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to Jennie,Anne and Rose Thank you so very much for responding to me..i have to admit it made me cry with the relief that others can be so kind. I have been looking on the forum all morning- what a wonderful place!, posting all over the place to try to get some answers etc..It seems that this is the place where i am going to find answers and support with REAL people who DO care what I feel and experience. There is no Rheumatology nurse in my hospital which is a dwoner as people say how invaluable they are! I wish i even knew one but don't. Jennie my daughter is doing her gcse's now too 1st one properly on 16th May i think! I am on facebook also if anybody fancies a chat there (victoria seco) I whinge well,but i am a hell of a good listener also(guess the job helps with that!) I find it a bit hard trying to find new posts or navigating to where i saw friendly people here any tips (mind you everyone seems so amazing) Thank you all again and hope to speak to you too. vicky xx 
If at first you don't suceed,try then try again..:-)
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Rank: Member
Groups: Registered
Joined: 3/16/2011
Posts: 24
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ps how do i know if i have had reply posts to things i have posted? help vicky 
If at first you don't suceed,try then try again..:-)
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Vicky
So glad you have found us! Im Ceri 43 and diagnosed almost 2 years ago.. I have 3 children 23,22 and 18 and they are really good at trying to understand, as is my husband but I think unless you have this horrible disease you cant really understand. I used to work as a HCA in a Drs surgery but physically cant do it anymore so im now working on reception but still find it hard.
I know what you mean about friends disappearing you certainly find out who your true ones are, but this forum really is a godsend!
When is your next hosp appt? There are other drugs you can try im currently on methotrexate 15mg and recently started infliximab which has helped a little..
Please dont feel alone, I will look you up on facebook Take care love Ceri xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Vicky
I'm also very glad you found us. You will make loads of friends on here, as well as receiving encouragement, care and support from people who really understand what this wretched disease is all about!!
I'm Jean, 68 (one of the oldest members - I tell you this before others do!!!) and am married to my lovely Steve. We have one daughter, Lucy who lives in Chester with my s-i-l and two gorgeous grandchildren.
Although my RA started off with a horrid bang and I spent a good deal of the time in bed unable to move, I am now in remission, which is wonderful. Don't ever despair, there is always hope. If it can happen to me, it can happen to you too.
As usual, Jenni has given great advice.
I look forward to getting to "know you
Love Jeanxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Vicky,
Welcome to the forum!
You need never feel alone again, on here we all know exactly what you are going through!
I am 61, married (32 years tomorrow!) with a 22 year old daughter.
I was a nurse too, but didn't know much about RA before I got it! I've had it 10 years now and am on mtx and humira.
Good luck to your daughter with her GCSEs.
Looking forward to getting to know you.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Vicky, and welcome to the forum - we are always happy to "meet" new members here. though sorry, of course, that you have the RA beast complicating your life. I`m Kathleen, married to Nick, & we live in Durham. We have two sons & two lovely little grandsons. The time after diagnosis is the worst - so many changes in your life,and so many fears about the future, and yes, the people we meet who have no idea what RA really is, and think it is nothing more than a twinge in a knee on a damp day : if only!!! Once the docs find the right drugs/combination of drugs for you things will improve. Good luck to your daughter for her GCSE`s, and do keep posting. Kathleen C x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi
Been looking for you on Facebook and there are a number of victoria seco's out there....
If you look on Facebook at the NRAS page. I am listed on there on the left hand side as Jenni B-l you can friend request me. several of us are on there.
Jennihow 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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also managed to bump the thread about RA Flair ups 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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Hi Vickey-- just wanted to say a warm hello to you. You ask how do you know if you've had a reply to your posts---what I do is click on where it says 'active topics' at the top of the page and that brings up any new posts. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Member
Groups: Registered
Joined: 3/16/2011
Posts: 24
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ceri,jean,dorleen,julie,kathleen...thank u so much for such a warm welcome.. vicky x
If at first you don't suceed,try then try again..:-)
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Rank: Member
Groups: Registered
Joined: 3/16/2011
Posts: 24
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 sorry doreen ,ps you dont look 61!! vicky
If at first you don't suceed,try then try again..:-)
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Rank: Member
Groups: Registered
Joined: 3/16/2011
Posts: 24
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jenni i cant seem to see a list of people when i get to facebook it just says 2.432 people like this? Am i just being dim or has the fog taken a hold already?  i will go and put my profile picture as easter eggs so hopefully you can find me? thanks vicky x
If at first you don't suceed,try then try again..:-)
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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vickeynursey wrote: sorry doreen ,ps you dont look 61!! vicky Vicky, you are now my new best friend!  Doreen xx
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Rank: Member
Groups: Registered
Joined: 3/16/2011
Posts: 24
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you are most welcome doreen x are you on facebook as well? vicky
If at first you don't suceed,try then try again..:-)
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Found you Vicky!
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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Yes Vicky, I am on facebook.....Doreen Littlewood. Same photo!
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