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Date: 09.11.2009
From: Lucy

Subject: young and scared

Hey all,

I havnt been on before but thought I would see how others manage with my condition. Ive had rheumatoid arthritis since the age of 2 and it has affected most of my oints over the years but despite that I try to live as normally as I can I have an 8 year old son and work full time and try to be optimistic and happy most of the time.
I am having trouuble with my hips at present and have had cortisone plus synvis inections and they are now talking about hip replacements Trouble is I cant be off work for long periods as I am single and need to obviously support my son and pay bills. I am really scared about the outcome for me and what life will be like in a few years. I also have claimed for dla in he past but keep getting knocked back and feel if I got this I could reduce my hours at work and this would make the disease easier tocope with.

Love

Lucy
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Date: 09.11.2009
From: valh

Subject: Re: young and scared

hi lucy how u manage to cope with full time work and a child is amazing i do not know anything about ra but jill does so she will give more advice than i can give u. just do not forget to ask for help when u need it ,people do not always realise how much pain arther causes so do not offer help or they feel u might think they do not feel u can cope, when all they wish to do is make life easyer for u so if u need help ask it does make a difference
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Date: 09.11.2009
From: shaz

Subject: Re: young and scared

hi lucy sorry to hear you having such a hard time off it a minute cant give you much advise on ra as i got pa but has val says when jill comes on she will give you lots of advice i understand how hard it is to bring a son up on your own and work full time i been there and done it but as for keep getting knocked back with your dla claim you need help from say cad or if theres a branch of Dial close to where you live contact them i used them when i applied and when i got refused they fought my case for me and i now receive high rate mobility and low rate carers,as you say if you got dla awarded it would make life just a little bit easier for you, jill will also probably tell you the same you need to reapply for dla lol shaz
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Date: 09.11.2009
From: Lucy

Subject: Re: young and scared

Thanks to both of you for the comments. You both seem really strong and I am most of the time lol. I try to be optimistic and positive and I guess I dont have much of a family network to call upon and thats why I am so independant....you also learn to adapt. My son is amazing and although I often feel guilty that I cant always be much of a physical mum he knows I try.

How long have you both had your conditions then? Its ust nie to talk to people who have similar conditions as thats what I find hard...I can try explaining what its like to someone but they dont get it ha
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Date: 11.11.2009
From: jill

Subject: Re: young and scared

reapply for that DLA Lucy, U r entitled to it.... and U r right, if u work part time, u cld manage your arthritis better.... if u need new Hips, U must have them sooner than later.... waht type meds r u taking?? have u ever had Methtrexate to dampen down the degeneration of this disease? have U family that can help u when u have those ops? friends that can get your son bk home from skool etc?? mb your son cld become your carer...sounds nuts I know, but my best m8, her daughter is her carer, and she goes on carers meets every two weeks, they learn and help the parent that needs support...plus these children get chances of holidays and things..... so if u do get the DLA, and your son becomes a carer for U, they pick him up in a taxi, take him to the place they meet and return him bk safe to u.... they help him understand that U need support, at times, and they will show him etc, plus its also fun, they play games etc....will find out where u can get this info from, if u want it....re apply for that DLA NOW....lol will nag u, ask Val, im good at that lol x
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Date: 11.11.2009
From: valh:-)

Subject: Re: young and scared

yes she keeps us on our toes but we love her for it
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Date: 11.11.2009
From: Lucy

Subject: Re: young and scared

Hi Jill,

Thanks for yor advice I have put in for the DLA and am awaiting the outcome yet again. It takes it out of you though the whole process so I have put it off for a while.

I have tried methatrexate and have recently come off it as I had bad side effects and felt tired and drainedall the time which I ust cant be with working full time and being a single mum.

I dont have much family and the ones I have arnt much use to be honest its just me and my son hes brill and I am going to look into him being my carer as he does in a way do things to help so that mmay be an option. I do not like to put on him though as this isnt his burden and I want him to be a normal 8 year old.

I am trying to put off the ops for as long as I can till he is older and then I can ust sort myself out as I wont have support with looking after him and getting him to school etc. I dont know how long I can put it off for though as it is getting worse so we shall see

How do you manage Jill? Do you have RA to?

I really appreciate your thughts and advice

Lucy x
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Date: 12.11.2009
From: jill

Subject: Re: young and scared

Hi Lucy, I have Inflamatory Arthritis, its not as common as R.A. basically I have Reiters disease(rare) and that triggered off Inflamatory artha.....anyway, Ive struggeld over the years, i have 5 kids, but back in 2002/3 the youngest was 3, so yes i struggled bad, hubby couldnt keep having time off, I had my spine op, and had to rally m8s round, prob withthat was, my kids didnt go to same skools, mine were in a Villiage skool, anyway, I did struggle at the time, was hard...... being honest, but without trying to scare yu, Your recovery will be good for u tho.... and it wont take so long, the social services can provide support to u, to help get yur son to skool..... look into tht too...U MUST talk to someone about your fears ok..... I do NOT regret my spine op, but now I need another one, and im still getting my kids to skool by car, so will be a nitemare....they r older, youngest is nearly 11 now, but I also have two children with Aspergers syndrome(autism) mild tho, but they dont get it.....my gals r lazy lol, my fellla is helpful when im unwell, but I also suffer from fatigue almost daily........ life isnt easy, and getting up so early it hard, as im stiff, thats y im on here now, got up so early lol...... Lucy im here for u, but u Must consider having your op b4 it gets worse..... it may not be so bad, at least yu have a gr8 son that will support u, it wont be for always, jsut whilst your gettting over your op........ have u thourt about Biologics meds... TNF ones...Im on Enbrel, get less flare ups Lucy.... helped me sooooooo much, gooogle it, as ive gotta go now, take care chat later xx
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Date: 12.11.2009
From: jill

Subject: Re: young and scared

By the way Luvy....Hip ops r easier to get over these days....ask about the Less invasive one, my m8s had one, was bk at work withing 6 weeks..... tell u about that more later gotta go get ready for skool xx
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Date: 14.11.2009
From: Lucy

Subject: Re: young and scared

Thanks Jill, looks like youve had your tought times too and still are :( its nice to hear off someone who despite all youu hhave had to go through is still positive and strong.

I'm back seeing my rheuumy in a few weeks so im going to speak to her about the ops as these injcetions havnt done much.

I am on diclofenac so may ask about enbrel and see what she says.

Thanks for being supportive Jill it sounds like your a bit of a roc for everyone but dont forget yourself within that hun.

I will keep you posted as to what happens. I went back to work Monday and its been hard but if I get the DLA I may be able to reduce my hours so hoping so.

Are you all set for Crimbo hun? I'm going to do most of my shopping on line so I dont have to walk around the shps its a killer when your in pain lol

Hope your okely dokely and I will catch you soon

Love Lucy x
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Date: 03.12.2009
From: Lucy

Subject: Re: young and scared

Just wanted to let you know all that I got my DLA higher rate for mobility and low rate for care hooray!!!! Going to look at reducing my hours at work.

Went to see rheumy today though and all is not good.....my hips are going to be replaced so not looking forward to that. But staying positive and looking forward to having less pain due to work
Hope you are all ok

Lucy
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Date: 03.12.2009
From: Jill

Subject: Re: young and scared

Lucy WELLLL DONE!!!! gives hope to everyone that has recently applied, some havnt got theirs..... Lucy pleae look into the hip,m ops that r the less invasive types, in my area of East Sussex my Hip surgeon pioneered this new less invasive type, smaller incisions, smaller more expensive instruments they use...cant remember the name of it, my m8 had it doe in one hip, back at work in 4 weeks, and was alking without crutch after a week and half....she did so well...pain went almost immed....scar about 6 inches.....amazing what they can do Lucy.... remind me Lucy, got a brain like a sieve, do u need two Hip ops? also at night, do u turn all night long, my hips go numb but hurt at the same time, and my feet go numb too....what do u do at night for comfort? do u wake up to move? also u can apply for grab rails etc, did u know that?
if no let me know and il tell u...u can also get a one off grant, im hoping to get one to help buy me a new Matress, a Tempur memeory foam one.... reason for this is...I struggle at night with back(need another spine op, fusion) and both hips hurt if i lie on them for longer than hour and half, but if i have my shoulders operated on again(got impingment rhummy said from xray in both) very upset bout that, as had both done 3 years ago.....for 4 months I could not sleep on the operated arm, so How on earth will I sleep if I cznt sleep on Just one side all night? cant lie on back, no way....My sister has a Tempur Memory foam, they r the best, but cost thousands... think the One off Grant will go upo to a thousand, so I am hopin they will help me..... do u have a date for your op yet? btw, ty for your kind words, we all support each other here, and I like to do my bit, if it helps, so thanks for your kinds sweet words Lucy xx
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Date: 03.12.2009
From: jill

Subject: Re: young and scared

Lucy, I did go back and remind myself of your probs etc.... I must let u know this, my best m8 has had spine op, sadly the Root nerve is damaged beyond repair, therefore constant back pain, but also knne and hip pain, affects the whole body as balance is otta sync....anyway, her daughter has now(and very proudly has become her carer) but ONLY after school... there is a club the young carers go to(arranged lifts etc) every two weeks, u may have ssen it on Pudsey night last week... all about the young carers, some kids get it worse than others, but it wouldnt Harm your son him knowing that U do struggle...infact I think(my opinion i know) its healthy that he knows that U r struggling at this time, and mb he will help u more, he wont be burdoned by it, brcos u wont allow that.... but these children have such gr8 fun, they learn how to help, like pick up clothes that they drop offf each night, towels after a bath etc, it just makes them think twice.....also it helps beoc when u do go into Hospital, he will Know that U r in safe hands.... he does need to know that U have R.A.. mb he does, and I think its a good thing, they adjust well, and my best m8s little girl is 8 and she loves helping her mum and going to the carers meetings, they do craft and fun things, and in summer, go out on day trips...... plus it helps the carer(child) become understanding of others that r mb wheelchair bound, instead of staring, like some kids do, out of curiosity, he will already understand Y they r in that position, so its also a positive outcome tooos U wont want Pity from your son, u will want Understanding...that is far more important to u both....hope that helps xxxx
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Date: 15.12.2009
From: Lucy29

Subject: Re: young and scared

Jill you amaze me you do your always so supportive and good at giving advice but yet you struggle so much yourself.
I am going to look into the grant for the matress as I have major trouble sleeping due to the pain and I toss and turn all night and have to get out of bed to stretch and move or I get exremely stiff and then cant move to much in the mornings. Its got worse recently since my steroid injections have wore off again and i'm having more in Jan so just got to keep positive I guess.

My little boy saw mw cry the other day which I hate myself for but I explained it was due to the pain and it helped us chat abit so i'm going to look into the young carers stuff.

I have been looking at the hips as yes I ahve to have two and a knee too. There are ones that last for up to 25 years now and i'm going to speak to my surgeon when I see him next in Feb as I dont have a date as yet they are leaving it to me to let them know when I can no longer bear the pain.

I didnt know about the grab rails Jill so that info would be really good thanks hun.

Are you all ready for crimbo yet? I acnt wait it keeps me positive looking forward to fun times like Crimbo. I hope you are well at the minute I know what its like to not get much sleep due to the pain and I think you are really an inspiration to us all for providing such support I really apprfceite your help

Chin up Jill

Lucy
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Date: 16.12.2009
From: jill

Subject: Re: young and scared

Awwwww Lucy, your kind words mean so much, but I must add too tht our Angela is a fabulous support to the memebers too.... think we all do a good job, u do too, simply by jsut telling us your story, its gr8 that u stay in touch as it keeps this forum going......ok i had an OT(occupational therapist) visit me here the other day...some good news, and some bad Lucy, but it will give u some idea ok what they can and cant allow... bad news, they wont give anyone a Mattress, they dont supply them, UNLESS u r bedridden and have bed sores, then they refer u to the district Nurse who will then provide u with an air bed...but u have to have sores, Open sores etc.... thank god i doint have that..... so they cant offer me tht...BUT she is giving me a support of sorts(hard to explain) but it i beleive air in this back support, that can be blown up) lol) by a mechanisim, nosity but she reckons comfy, so for me, when i have shoulders done, it wont hurt my bck and Hopefully get some sleep, even if kinds sitting up, so giving tht a go...will let u know what it truly is like.... they supply grab rails where ever u need them...im also getting a Tiliet lid raiser, so no need to sit, u bsically (LOL) dont need to use ya knees to sit down on the lo, its at almost bottom height...im 5ft9, so my loo is low lol.... ive already got grab rails in shower room, u can ask for them for your bath too, and shower, they can also raise the bed, but the bed has to be suitable, mine isnt....also they can raise your setter with blocks.....again mine isnt suitable lol...but hey, yours just might be.... there is a one off grant they can give U, if u own your own home even better, but if u rent privately, landlord has to agree,(work is free) but the landlord has to agree that if U rent, that landlord allows U to stay there for five years!! some landlords wont do it, big commitment, but lots of investing landlords will!...u cld have a totally new shower room..... or toilet fitted down stairs, if u have room...... so it was worth it, she was here within a week!!! even tho i had a letter saying big waiting list, she arived withing week..... so Luvy ring up your council, ask for Occupational therapy dept....they will talk to u over phone to take some details of your disability, and they will give u all the support they can...they r brill, and its all free....two years ago, i had a huge grab rail put up outside. stairs down to the patio, i couldnt mamage, only 4, but they put a huge one in,its so helpful...... so write a list of all the grab rails u need....toilet, bathroom, extra banister for going upstairs(two r best, gr8 support on body) grab rails over bath so u can get in and out, so much help..... and the grab rails r really smart, white not ugly, and my banister is pine!!...so go for it girl... let me know bow u get on ok...and im gald u had that chat with your son, my best m8s child is a carer, and she goes to a club every fortnight, did u see it on pudsey night on TV.... it helps him support u, like make a coffeee, mb clean the work tops, hooover, all the things that U cant do, at the mo.... he then gets rewarded with fun, be it only every two weeks, with other carer kids, of all ages...its fab.... they also get an agreed taxi company(so all safe) to collect and bring him bck home...... its amazing...and it makes the children that are carers have amazing confidence in their abilities...... not sure who u ring for that tho, but if u cant find out, il ask my m8 ok....let me know..... ok gotta go for a cofffee.....im ok at mo lucy, was just upset that altho had shoulders operated on three years ago, seems ivre got impingement again, plus it wasnt an easy op to recover from.... plus gotta have fusion, so all in all, yea i was down and angry,,,,lol like u said CRIMBO sooon....so yayyyyyyyyyyyy....staying Positive.... u make sure u and your son have a gr8 one ok...and goona nag u NOW....GO RING THE OT DEPT...NOWWWWWWWWWWWWWWWW!!!!! lol xxxxx
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Date: 24.12.2009
From: Lucy29

Subject: Re: young and scared

Aww your mad you Jill love it!!!!

I'm awaiting an appointment from the OT department but I have had one before and they have supplied me with a few bits that do help but they cant do too much as I do rent my property and am planning on moving into a smaller one soon hopefully a bungalow as I cant manage the stairs any more my partner is now carrying me up and down.....which has its advantages lol. I will see what they have to say.

I have found some great equipment to help me get my shoes and socks on as well as a grabber to help me with the bending and a kettle tipper.

I think thats the thing I hate most....when you have something done and it gives no improvemnt and I havnt had an op yet Jill so dont know how you keep so positive. They wanted to do an op on my hands a few years ago but I dceided against it as although they are quite badly deformed from the arthur they dont give me much pain.

They have put me back on mthx and upped the dose and they are trying me with indometacin which dosnt seem to be doing much....have you tried that Jill?

Hows the Xmas plans coming along? You all done and ready for action tomoz hun?

I will stay in touch as it helps me see that theres not just me out there with these worries....and i'm not alone. I'm usually really strong but I have my moments. Like the other dat I was terrified of going out in the snow as I cant get up if I fall and my son wasnt here to help me but my none slip boots on so it seemed I was uselss and had a little cry.

People dont see that such little things to them are really big for us and it gets me down having to explain all the time.

I hope you have a great Crimbo Jill and an even better New Year......hey maybe 2010 will be the yaer they find us all a miracle cure he he I know keep dreaming Luc.

Keep in touch and take care

Love Lucy x
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Date: 29.12.2009
From: sandra lowe

Subject: Re: young and scared

hi Lucy i had RA at an early age went into remission until i had my 1st daughter then it became to effect every joint in my body. 33 years ago the only thing they could offer me(in ireland im talking about)was painkillers that made me spaced out, not very pleasant when trying to look after a 6month baby or gold injections which i refused! so for years i struggled with pain ( crying at night telling my husband i wanted to die) to cut the story short i went on to have 2 more children, then my hubby suffered with bad depression witch didnt help as flare ups became unbearable, and with no medication to slow the RA down have become to have deformed feet and hands. Have managed to work up til 4 years ago, mind you i childmind 3 girls 2 days aweek as i love children but find that exhausting sometimes. But my kids are now 33,29 and 24 so the moral of my story is you always have to be posative not saying i never get down because i do, and i didnt have help like this forum to talk to ones who know what its like to be in constant pain!!
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