Hi I'm a newbie

brighteyes · 4. Feb 2009, 10:16

Hi All

Just joined the forum and thought I'd introduce myself.

I was diagnosed with RA when I was 11 (I'm 45 next week!!). I have 3 kids 18, 15 and 13 and have (some would say unsurprisingly ) had 5 hip replacements. I don't really know why I've never joined before.

I've been on pretty much everything over the years and in 2006 after a 2 year fight, I was finally prescribed Etanercept. It has been great. I inject once a week which is easier than it sounds, and take a cocktail of MTX, Prednisolone and NSAIDs. Unfortunately, being diagnosed in the 1970s meant that there wasn't alot of knowledge or drugs and consequently I have an awful lot of irreparable joint damage meaning that even with Etanercept I am in considerable pain all the time.

But I'm incredibly stubborn!!! I refuse to let this thing beat me and I try to swim and walk my dog when I can. My consultant has always told me that my stubbornness is my saving grace and has kept me out of a wheelchair.

jeanniep · 4. Feb 2009, 10:20

Hi brighteyes
welcome to the site. I have OA but plenty of people on here have RA and will welcome your expertise, I'm sure. And good for you for being stubborn!
This is a good place to have a moan or a rant, lots of support and laughs.
Cheers
JeanP

vonski · 4. Feb 2009, 10:20

Hi Brighteyes

Welcome to the site. I'm sure you'll spend a lot of time on here and get and give good advice.

Vonski

suzster · 4. Feb 2009, 11:22

welcome, i have ra, i was diagnosed sept 07 after a lot of pain and drugging up!
i have had joint pain for many years, it started when i was about 18 and i'm now 34 (nearly 35!) but it all got really bad after i had my youngest in jan 07. i also have a nearly 10 yr old.
like others have said this is a great place to get your moaning done without upsetting your family!!! everyone is so kind and helpful.
sue

lindalegs · 4. Feb 2009, 11:43

Hi Brighteyes and welcome to the forum,

Your experience will be of so much value here especially as you've also brought up 3 children whilst having RA :shock: - not an easy task when you're well

Anything we can help you with, just ask, there'll be someone on here with the answer - well that's as I've found

........oh and feel free to rant and rage we're also a good sounding board for that too.

Luv Legs

brighteyes · 4. Feb 2009, 12:56

Thanks Legs and to everyone for your good wishes.

Having had RA for nigh on 33 years, I suppose I do have a fair bit of experience I can share.

I'll do my best to help where I can.

nearlybionic · 4. Feb 2009, 13:33

Welcome Brighteyes,
As has been said already I am sure you will find this site a great source of info and support, as I`m sure your expertise will be too!!
I have OA and am due to have my 1st hip replacement soon, so anty tips or advice will be gladly received.
NB

sarahbenn · 4. Feb 2009, 14:29

hi there brighteyes and welcome

im new to the forum also and have already had some good advice from the members, im sure we'll all learn a thing or two from your knowledge and experiences also

kayleighb · 4. Feb 2009, 15:39

Hi bright eyes,

I have had RA for eight years now, was diagnosed when I was 15. Like you since I have had it from a young age I have become very determined and stubborn to not let it beat me; but your post still really made me feel hopeful that I can still feel even more positive in the years to come

Anyhoo, welcome!!

See you around, Kayleigh x

jaspercat · 4. Feb 2009, 15:44

Hi Brighteyes

I have had RA for 13 years (now 50) I am currently on MXT injections 20mg I try not to let things get me down and will carry on fighting this as long as possible.

I have to say though I have been troubled with painful hands wrists for about a year and now my ankles have joined in too I am hopeful that my Rheumy will do something in april love Jaspercatxx

brighteyes · 5. Feb 2009, 05:15

nearlybionic wrote:

Welcome Brighteyes,
As has been said already I am sure you will find this site a great source of info and support, as I`m sure your expertise will be too!!
I have OA and am due to have my 1st hip replacement soon, so anty tips or advice will be gladly received.
NB

Well, all I would say is that it's not the end of the world. I was just 20 when I had my 1st hip replacement and it was a revelation! Before, I couldn't walk across a room without collpasing in agony. They kept putting it off saying I was too young but in the end they really had no choice. About 4 months later my boyfriend took me to Paris for my 21st Birthday and we walked all over the city.

The only downside of having one so young is that inevitably it needed revising and the more revisions you have, the harder it becomes to recover - but I'm still going strong. Just listen to the physios and get mobile as soon as you can and you'll be fine.

brighteyes · 5. Feb 2009, 05:31

kayleighb wrote:

Hi bright eyes,

I have had RA for eight years now, was diagnosed when I was 15. Like you since I have had it from a young age I have become very determined and stubborn to not let it beat me; but your post still really made me feel hopeful that I can still feel even more positive in the years to come

Anyhoo, welcome!!

See you around, Kayleigh x

Hi Kayleigh

It's tough being diagnosed so young but there is also an upside (!). Because you are so young, you can fight it better and these days, if they catch it early enough, the new drugs now on the market make it less likely that you will suffer irreparable damage to your joints. My blood tests are really good now and the disease is pretty stable but I suffer more from the damage that's already there.

There's nothing to stop you having kids if that's what you want to do. Kids are amazingly adaptable and mine all learnt very early on what I could and couldn't do. they would act differently around me than if their dad was there - not expecting me to keep picking them up and things like that. the most frustrating thing about it was not being able to get down on the floor. I couldn't change them on the floor but got a dab hand at doing it on my lap or on the sofa instead and indoors I had a changing table. My grabber was a godsend when picking up toys. Now my boys are older, they all do their own washing, can cook themselves a meal if they need to and do things like change their own beds. I think it's done them a favour!!

In my younger days, the worst part for me was feeling that people were always staring at me. On holiday, it would take me 1/2 an hour to pluck up the courage to get up from the sunbed and walk to the pool because I always felt that I was being watched. There are ignoramuses out there who will stare but most people don't really notice. And these days, I don't care what people think.

Do you get the "but you're far too young to have arthritis!!" quote? I used to get it all the time.

Anyway, my advice would be that's it's all about your mindset really. Of course I have tough days (today being one of them) but I refuse point black to let this thing beat me. I'll have a pyjama day today but tomorrow I'll be out and about again. Just keep telling yourself that there are loads of people worse off.

Take care

brighteyes · 5. Feb 2009, 05:36

jaspercat wrote:

Hi Brighteyes

I have had RA for 13 years (now 50) I am currently on MXT injections 20mg I try not to let things get me down and will carry on fighting this as long as possible.

I have to say though I have been troubled with painful hands wrists for about a year and now my ankles have joined in too I am hopeful that my Rheumy will do something in april love Jaspercatxx

Hi Jasper

I can't really offer any advice for your hands and wrists as I am one of the incredibly fortunate few who doesn't really suffer with bad hands. I have one bad thumb and my hands get stifff but they aren't badly deformed like some people. I find using the computer helps as it exercises your fingers and - of course - wear gloves whenever you are outside in the cold.

I've got a brilliant Rheumy who managed to fight for Anti TNF therapy for me. I know there are possible side effects but to be honest, the difference it has made to my everyday life, I'm willing to take the risk!

mylo · 5. Feb 2009, 06:25

Hi you're an inspiration!! I've put a post on about positive thinking (my way is to pretend I don't have RA, and I'm not sure that's the best thing), but I think you've got it sorted in your mind. Perhaps it all just takes time ... Sorry you've had such a hard time, but you have a fantastic attitude, and I hope one day I'll be able to cope as well as you. Jane xx

frogmorton · 5. Feb 2009, 10:58

HI Brighteyes
welcome from me to the forum.
Looks like you'll have lots of useful advice for us which is great

:!:
Hopefully we can be of some use to you, if nothing else we can be a geat support

Good to have you on board
Toni

woodbon · 5. Feb 2009, 11:22

Hi, You sound a really positive person and must have a lot to offer to us. Especially those people coping with young children :!: I have oa and no kids, unfortunatly, but I think we all share a lot of the same problems whatever type of arther we have

Just to say welcome. Love Sue

colinone · 5. Feb 2009, 11:56

Hi Brighteyes
What can I say I’m going through a bit of a bad patch at the moment but you have lifted my spirits. You are indeed an inspiration and please make a post on the young people forum if nothing else just to let them know there is a future. I feel so sorry for the young people who suffer and those bringing up young families trying to cope with such an illness and bringing up kids looking after house and family must be so hard at times. I get so inspired by the people on this site. I came on here today to have a moan and groan but find I can’t after reading some of today posts. I was diagnosed with RA and PA some 30 years ago but have only been what I call bad for the last 4 years. 4 years ago I was told by my rheumy I had about a year and would end up in the wheelchair. 2 years ago he retired and I met with him and the new Rheumy he introduced me as his miracle. And yes all due to being stubborn. Ok the day I need the chair is drawing nearer I keep looking on ebay for a cheap one lol. Not for everyday use mind just those days I need it. I have not been on the site long, Its funny how the site works one day you see posts from people feeling so ill and then the next thing you see is them writing to others giving help and support they are a rare bunch and I wish I had found the site sooner. I’m sure with your experience you will be a great asset here and by the way 45 is still young lol yes I’m a creep as well. Anyway I just wanted to give you a welcome and one day I will learn to keep my posts shorter. Take care will catch you round the site
Colin

shelleymogui · 5. Feb 2009, 13:06

Hi there brighteyes,

I am new also, and even though i haven't got arthritis and am on here to look for help supporting my father, I have had nothing but fantastic advice, suggestions and thoughts.

I admire your outlook on life and i'm sure you'll be able to help a lot of members on here.

Shelley x

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