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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hi all.
Before I start I have severe ra and not many (only 3%) get this sort of severe disease- plus I have systemic disease which adds further dimension. Dont read and think- OH my goodness this will be me, because in all likihood it will not be anywhere like this for you!
putting family things to one side for a moment, things here are pretty grim.
The RA has rocketted.
the hospital rang me at 7.45 this morning as they have got my 3 wk old blood tests, a letter from endocrinology saying I am being treated for primary addisons.
when i told them the bloods from last wk, they were horrified- plus the degeneration in the hands, knees, feet, neck etc.
swollen glands and new lumps and bumps appearing.
they are faxing the GP and asking for all the more up to date bloods- (computers not linked from one NHS trust to another)
I have told them I do not think I have an infection- but am on anti biotics, they dont think I have an infection either but clearly need to be seen. In a nut shell it has gone belly up!
I am now taking 60mg of steroid a day, 40mg of morphine plus co-codamol, celebrex etc. Still not moving much although I can hold a mug and drink a little today- i havent been able to lift my head enough for 3 days.
I have to have someone here with me 24/7 at the moment. Richards mum came to help this morning. my PA currently does 9-2, 3 days a wk.
This is not enough at the moment. I need someone to get me to the loo etc. how grim is that at 34?!
If this is going to be a long term status I am going to have to have more care. Richard says he will have to give up work (I dont want him to at all).
My mum has suggested getting a child minder for Bernice for 3 of the days R works and the various inlaws and parents can help the other day (R does 4 days a wk).
i can see that I am going to have to beg for some more care hrs- does anyone know there is a way of accessing this quickly?
I will need to appoint another carer as none of mine can do more hours- I will have to map out all I need etc but am just not really together enough- put i will have to pull myself together.
The rheummy nurse is going to ring back with a plan of sorts, clearly I need to be seen by rheumatology this wk.
would appreciate all helps.
Jenni how 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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Oh Jenni, I know I won't be the only one reading your post who wants to rush down to help you out!
In an ideal world we would live in our "RA village" and you would have an army of helpers.
I can't help with how to access more care hours but hopefully someone will know and advise you how to go about it.
Could NRAS help at all?
That's a good idea, to get a child minder for Bernice, or could you get her into a nursery?
Hope the rheumy nurse rings you back soon with an urgent appointment.
Praying for you Jenni, that you get the help you need so much.
Love and hugs, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Ohh Jenni love so sorry see ra so horrid to you i would suggest get a loved one to ring nras asking to speak with medical advisor you do much for them and all on here,like doreen said in subreal world id love to travel down and help out. so cyberly only way possible. id also say social services should be involved gaining you extra care on emergency basis ,can GP sort this out. child care yes id get faimly to help sort that out,meantime praying they see you asap at rheumy clinic. much lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Possibly emergency services, as Mell says, in the short term. They should have an emergency number/home care number in the phone directory. Also try the GP surgery for some help via the DN. If you need anyone to ring for you - I'm more than happy to do this.
Love to you my dear Jennixxxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Just a quickie Jenni. So sorry to hear of your difficulties at the moment. My first port of call would be your Health Visitor. They have access to numerous services and should be able to sort you out with help for Bernice and extra care hours. I have in the past (when kids were small) received immediate help. They can access Social Services etc and should be on hand with you having a small child and being disabled. Speak again soon. Got to dash. Thinking of you, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 872
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Dear Jenni,
I'm so sorry to hear things are so difficult,
My understanding is to seek help via social services customer services number for your area but the awful reality seems to be he who shouts loudest and is the most persistent is more likely to get help....
- i hope someone is able to help you with this, they need to highlight crisis situation canNOT go on & you need help NOW
I agree that NRAS may be able to help fight for you or advise someone who can,
& i'm thinking too might not be a bad idea to ask rheumy nurse if they are able to become involved with making a call too - the more calls the better
Take care thinking of you and yours,lots
Love Liz xxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 1/27/2010
Posts: 75
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Hi Jenni
So Sorry to hear you're having such a horrible time.
On the help front, am I right in thinking that Bernice is around 2yrs??? Anyway if she's under five you will still be on the Health Visitors caseload. AS a Health Visitor myself I have helped families in similar situations access local services quickly, usually social services but your HV can put in an urgent referral for help and sould know what services you can access locally
Hope this is of help
Thinking of you
Clairexx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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thank you so much
I hadnt even thought of the HV. Mine is really nice!
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Oh Jenni - I can't even think of anything else to say but wish there was something we could do to help. Hope the HV is a good starting point for you. Thinking of you all.
Julie xxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Jenni, I am so sorry and wish so much I could be of help, if only we lived close to each other, I would happily have Bernice for you. It brought tears to my eyes reading how ill you are at the moment. If as you say your health visitor is good, she will organise this really quickly. You will need more help for yourself too, and they can help with this, just as much as your GP and social services dept. Sending you so much love and hugs, and wishing I could do so much more x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Dear Jenni, I`m so sorry everything has gone so badly wrong for you. Others have given suggestions which may be helpful to you - I hope so anyway. There may be a Rapid Response Team attatched to your PCT, who will come and provide help in an emergency - we have one here, and they are very good. Your Health Visitor of GP should point them in your direction. Hope things get better for you soon, Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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My dear Jenni,
I am so sorry that it is so bad again. How you must be feeling on those high doses of meds doesn't even bear thinking about. No wonder that you can't hold a cup.
Lyn and the others are right, first port of call is the health visitor who has a quick access to the help you obviously need. Your GP has main responsibilty for your physical health needs so is another contact point. I am not sure what help NRAS would be able to point you in the direction of but they may know a man who can. In other words, try them all.
Do I recollect help from the local college in the past? Any chance of something from there?
Sending you all my love and so sorry that there is no practical help we can offer. If only.
Eleanor x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Oh Jenni!
I am praying here for you every single day.
I was going to suggest the HV too as when my RA became significantly worse for me in 2006, it was my HV who helped me the most. It will be well worth a ring especially as Bernice is still so young.
Barbara will know exactly who to ring in regards to help too, I am sure...
I really think you need to be assessed properly in a hospital on a rheumy ward- you are most definitely a top priority so I fail to see why the rheumy or GP doesn't take this view!
Much love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Jenni , really hope you can get the help you need for you and your family asap, sending you cyber hugs and will pray for you tonight
Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Jenni
What rotten luck the RA intensifiying to such a degree. So sorry to hear you are in such a state with the RA and everything on top. I have my fingers crossed that this will pass quickly and find some relief soon.
Sending you a soft fluffy hug.
Mari xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Sending you lots of love and prayers- wish I could do something to help
Maria xxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
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Dear Jenni, I'm sure if it were possible we would all come down the computer lines and help in the best way we could, hands on. But all we can do is send you our thoughts and prayers that something will happen to make things better for you. Love from Glenys x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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Home start ? Might they be of use .They take out my friends twins too give her a break . Even if it was only an hour or 2 may help . My friend also has had sudents she got twins and a little girl 14 months apart just just came to play with the children .Came from childcare collage . Volerner buru might have a volenter for a few hours ???? s s might pay for sponserd minding for 6 weeks ????Which might tide you over till you feel better . christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Oh Jenni, you are just having the most awful time of it!
Have you tried adult social services or even Bernice's health visitor? I can't think who else you might contact to get some fairly instant aid.
I suppose the way to look at it is: firstly, how to get through the next week or so ... with the help of family and existing carers. Then secondly, a medium term plan with carers in place that can see you through until either an improvement in your health or a long-term solution can be reached (hubby full-time or funding for carers 24/7, etc).
Don't know what else to say ... you seem to be under siege from all directions ... but you're in my thoughts every day x x
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 96 Location: Buckinghamshire
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Poor you Jenni - I don't have any more suggestions - I was thinking HV too - but I wanted to let you know I'm sending good wishes your way.
xx
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