first timer: hi,just wanted to say hello,been watching... - NRAS

NRAS

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flowerpot profile image
25 Replies

hi,just wanted to say hello,been watching for a long time,and now i would like to join in ,love all the advice and help, a bit about me, r/a confirmed 2 years ago, been a long battle but now am getting use to it,i seem to cope better, [and have great family] just started methxt and back on the oral steroids,and take hydroclo plus naproxen, even starting to feel human again at least for the time,so please keep up the good work and i look forward to making some new freinds take care,x

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flowerpot
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25 Replies

Hi flowerpot, welcome to the site and introducing yourself. I like all the blogs on here, as quite often someone will ask something I am thinking about or concerned about, and the advice on here is always sound.

I was diagnosed a year ago, and I am in remission now so am living life in a better way than before. I feel so bad for those diagnosed young or with small babies, it must be so difficult to deal with it all. I was 48 and it stopped me being able to pick up my grandson and I was devastated by that.

I hope you continue to feel well abd cope with things, nice to hear from you.

Petra xx

flowerpot profile image
flowerpot in reply to

hi petti,thank you for your reply, like you i feel so sorry for the young and them with small children,it must be so hard, i was 56 when told and the last 2 years has not been pleasant,i have 3 grand children,2 g-sons and 1 g-daughter,but its the g-daughter who makes me laugh the most,she is 3 and always copys me,bad knee/hand /etc and bless her she always climbs on my lap with such care,though she is a little terror.i am glad your feeling better and hope it continues for you,and look forward hearing from you soon, sue x

jaki profile image
jaki

HI both i know from experiences its very hard ive had it the last 15 years im 43 now, i have 4 children my youngest is 5 and when she was a baby some wks i couldnt care for her needs at alone mine but im on humira now and things seem to be looking up which is great because my youngest is also epileptic but to be honest its them that keep me going and get up for every day. take care speak soon, jaki x

flowerpot profile image
flowerpot in reply to jaki

hi jaki,you are an inspiration to us all,and i agree children/grand children do keep you going,thank you for taking the time to talk and hope to hear from you again soon, take care, sue x

sylvi profile image
sylvi

Welcome flowerpot, i was diagnosed about ten years ago when i was nearly 46yrs. The last three years have been horrendous,but tomorrow i will be going into hospital to get my knee sorted out.already had knee replacement,but it didn't go well. tomoorow it will be done properly.

You have come to the right place,there are lots of lovely people on here who are very experienced with ra. They come from all walks of life.

Look forward to hearing your blogs.

sylvi.xx

flowerpot profile image
flowerpot in reply to sylvi

hi sylvi,thank you for replying,i,v had some lovely people get in touch wish i had done it sooner,hope all goes well for you tomorrow,and look forward to hearing from you. sue x

Flowerpot....I just love your name :-) Welcome to the group x Although only recently diagnosed I've been hanging around here for a few months. I'm 43 with grown up children and currently a lady of leisure. If you can call limping to weekly blood tests leisure lol. I do love my swimming though and walking my dogs. No grandchildren yet I'm afraid although my daughter and same sex partner have recently adopted a gorgeous beagle puppy so I'm a nanny of sorts to a boisterous grandpup lol. I look forward to hearing more from you and love meeting new people too.

Paula x

flowerpot profile image
flowerpot in reply to

hi paula,i too am a lady of leisure,and now i have some movment am hoping to start swimming soon,just came back from park with daughter and grand daughter, [first time in about a year], where grand daughter spent an hour chasing two puppies around, been thinking myself maybe a dog would be good for me, or maybe this is just a crazy idea,lol maybe you could just remind me how hard puppies are,anyway look forward to talking again soon, sue x

megant profile image
megant in reply to flowerpot

Hi Flowerpot,

welcome to the site I'm pretty new on here too. I was diagnosed in Feb 2012. I still work but some days are a real struggle, but I won't let this RA take over my life (well I'm trying to not let it) !! I'm 42 and am finding it hard to come to terms with so I've joined a support group which I've found really helpful. I'm also going sailing this Saturday, I've now started to feel the need to go out and do things that I might not be able to experience in years to come. Perhaps you should get a kitten, not as hard work as a puppy lol

Take care

Alison

x

flowerpot profile image
flowerpot in reply to megant

hi alison,am pleased to see that you are being so positive,you do get times when things seem to go out of control,but i always like to focus on something good ,it usually helps,we had a cat up to 2 years ago, when old age took her,so not in a hurry to replace her yet, i still got the two gold fish and believe me i cant walk past them without them wanting feeding,i think they must be on steroids as well lol sue x

megant profile image
megant in reply to flowerpot

Hi Sue, I had to have my little man (jack russell) called billy sent to heaven about 2 months ago, and still miss him terribly, those gold fish of yours have got you wrapped around their little fins lol or they know you're a soft touch lol

tale care

Alison

x

flowerpot profile image
flowerpot in reply to megant

hi, alison,sorry to hear about billy,we used to have a dog,but she passed away 12 years ago,and this will be the first time we have thought about another one,its true you do miss them ,well they are part of the family, so its to be expected,take care, sue x

megant profile image
megant in reply to

Hi Paula, congratulations on becoming a nanny, I bet your grandpup is so cute. Unfortunately my little boy (a gorgeous jack russell) called Billy had to go to heaven about 2 months ago now and I miss him dreadfully. I was diagnosed in Feb 2012 and am 42 but am finding it extremely difficult to come to terms with phsycologially. I have found this website really helpful hearing from others like us. I have also joined a support group which I went to a couple of weeks ago, which was over-welming but also really good. Enjoy walking your dogs

Take care

Alison x

Hi flowerpot, and welcome I was 45 when first ill/ diagnosed though looking back it may have been lurking longer. 2.5 Years into my illness things and arent bad now I have improved so much and I work part time 27.5 hours

flowerpot profile image
flowerpot in reply to

hi summer,its nice to hear so many positive comments and it makes you feel like there is a life with r/a,so glad you have improved and are able to go back to work, its nice to be able to see other people each day,keeps you in touch with reality lol sue x

Hello Flowerpot - an inspired name I agree! I was diagnosed last year at 48 - but must have started having kids later than lots of you here because my youngest of three sons is still only just 15. I think it's always good to read of people who are getting on well with their drugs and I'm hoping that I'm about to become one of those too. I take 15mg of MTX and have just had 400mg Hydroxy added in and am feeling almost entirely pain free bar a permanently sore ankle (but I have just walked 4 miles with the dog though and managed not to limp much so it's not bad really!). Onwards and upwards and welcome to the site!

Tilda xx

flowerpot profile image
flowerpot in reply to

hi tilda,thank you for replying everyone has been so nice with lots of poitive comments,only been on mtx for 2 weeks but take steroids and hydroclo plus naproxen,so far so good.like you i have been able to get out for walks [but only just started to go out this week] and its like a new found freedom, in danger of overdoing it as i cant stay in and there is so much i want to do, i suppose i want to do it all in case i find myself sliding back down the snake in this crazy snakes and ladders game,anyway at the moment life is good and i hope yours is too and i look forward to talking again soon, sue x

Yes I'm in exactly the same boat Sue - 2 days of being virtually pain free and not hobbling as much - fingers and wrists seem almost back to their old selves (apart from my pinkies which have drifted off at an angle permanently it seems?!) and I feel so much happier than I've been for ages. But it is snakes and ladders you are so right and important to seize these days and enjoy them to the full when we can. But it's a balance and if we overdo it then we pay a price later on so it's all part of the new learning game I guess. Tilda x

PS when yo say hydroclo and MTX you do mean Hydroxychoraquine/ Plaquenil same as I'm now on? If so we have done same thing in reverse - so the mix must be a good one I think!

flowerpot profile image
flowerpot in reply to

hi tilda, yes it is that mix,like you shoulders ,wrist /fingers knee toes [it sounds like the childrens song] all coming back with the odd bit of reshaping,its great cant wait for tomorrow,and thats something i hav,nt said much in the last 2 years,but yes we must take things slowly and enjoy them sue x

helixhelix profile image
helixhelix

Yes, don't get too enthusiastic to start with - build up gently if you've not being doing much for a while. I'm on MTX, hydroxy and sulpha and it works mostly ok for me. The difference when the drugs do work is brilliant, so do hope you go from strength to strength once the MTX really kicks in. Polly

flowerpot profile image
flowerpot in reply to helixhelix

hi polly,thank you for your advice ,your right i must take things more slowly and give things a chance to work properly, at my age i should know better and i want to feel well for as long as possible,all these positive comments from everyone is so nice to hear,we all deserve to feel well all the time,thank you for your reply and i look forward to talking again soon, sue x

Judi profile image
Judi

Hi Sue, nice to meet you. It's good that you have managed to get out.

Dogs: we got a Jack Russell terror (... terrior) last year. He was a rescue dog so no puppy dog stages to go through.

I must admit it's my OH who takes the dog out for a walk (we live half way up a hill so walking anywhere is very much a problem for me). That being said our dog has turned out to be such good company for me and he can be so funny it was the best thing we ever did. With regard OH walking him, OH has breathing difficulties and has to go for a walk every day hence getting a dog to walk.

There are downsides of course, when we first got him we had to take him to a vets as he got kennel cough - few tablets which cured that, and clearing up the mess in the garden ......... being a small dog he only does small ones !

Judi xxxx

flowerpot profile image
flowerpot in reply to Judi

hi judi,its lovely to meet you,i have looked at rescue dogs,but 3year old grand-daughter comes down every other day,so think it might be better if we decide to get one ,to get a puppy, [would be more tolerant of being hugged to death] only live round corner from large field so that would be ok, we have small garden,which o-h has a bit of a veg patch in, most of my gardening is in bags and pots, o-h calls it pot city,so we would have to sort that out, but yes agree it is company and also a motivater for them days when we just cant be bothered,and as o-h retires in a couple of years it will keep him on the ball ha ha , sue x

elrose profile image
elrose

Welcome, I was diagnosed 16yrs ago aged 23..fun times. I have a 7 and a 3yr old, work full time so am almost always permenantly exhausted. I have a bonus condition known as Feltys Syndrome which essentially means my immune system is wiped out so antibiotics are usually a part of my regime. Tried MTX for 6mths, had no effect, Ciclosporin made me ill and am now on Hydroxychloroquine and have G-CSF injections. Thank heavens for pre-payment prescription certificates or I would be bankrupt and am rather thankful for this place too. As earlier members have said often people ask questions that you are thinking but weren't entirely sure how to get across and they are usually great to have a vent at - no one gets it quite like we/they do xx

flowerpot profile image
flowerpot

hi eltrose, how do you do it,i feel tired just reading it,you must be absolutley exhausted,i really feel for you my grand=daughter is 3 and she wears me out,so i dont know how you cope with a 7 year old as well,yes thank goodness for pre paid and it is lovely to have other people to talk to,who understand,at least if we have a grumpy day no one takes it personnally, sue x

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