Blog Virgin!: Recently discovered this site and thought... - NRAS

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Blog Virgin!

gina_loca profile image
22 Replies

Recently discovered this site and thought wow! Finally an easy, user friendly page where you can ask questions, help others, vent or laugh! Had R.A for over 20 years, yet only being in my mid 30's such things as these were not available when I was younger and always was the youngest in support groups which, whilst I amnot being ageist by saying this, depressed me even more. Took me a long, long time to accept I had R.A and know my limitations etc. But being older (although not much wiser) I feel so much better about it. Swearing (in private), laughing and a wonderful combo of Rituximab, MTX and the Rhuemy guys at York Hospital also helps. Got so many tales to tell ranging from medical to personal to comical to down right unfair but not sure if anyone would really be interested in readin them? But even if no one does it feels good for me to write about stuff!

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gina_loca
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22 Replies
sylvi profile image
sylvi

Welcome,you have a laugh,cry,rant as well,there are a lot of lovely people on here too. There are friends who work in the nhs, others like me who know nothing about the technical side of all the big words and fancy names. I would say ignoramous but i know someone will tell me i'm not. I've ha ra for about 7-8yrs and fibromyalgia diagnosed this august. I get very fed up at times and there are folks here who cheer me up no end. We share our good days as well. So don't be afraid to say what you feel.

Anyway last word welcome.xx

CathySmith profile image
CathySmith in reply tosylvi

Hi Sylvia......:)

gina_loca profile image
gina_loca

Thanks Sylvi thats encouraged me to get started, take care G xx

Marnie87 profile image
Marnie87

Hi gina,

Welcome :-)

This site has literally been my saviour! Being in my early 20s I felt very alone when diagnosed but all the lovely people on here really do get me through each day.

Glad you found us and I look forward tk hearing your tale :-)

Marnie x

Gina_K profile image
Gina_K

Hi Gina,

Another Gina!! What a cheek! Only joking. Nice to meet you and welcome. Glad you found us this site is here for people like us to share our experiences and is'nt it great that we are not alone anymore?

I am in week 3 post surgery of my ankle fusion. Latest news itchy scar.

My sister has been here last 10 days and leaving tomorrow, I am going to miss her so much :(

Regards, Gina.

gina_loca profile image
gina_loca in reply toGina_K

Hi Gina

Since this site ain't big enough for two Gina's lol, I will be more than happy to be called George! Hope the fusion went well, had my left one done about 10 years ago and it made a vast improvement (still walk a bit like a drunken Captain Jack Sparrow) but at least I can walk! Keep in touch and let me know how things go. G xx

Ella32 profile image
Ella32 in reply togina_loca

Hi Gina (george)

I'm 32 have had JRA since i was 13, have had hips/knees replaced, but now have both ankles booked into fused, am bricking it (it doesn't get easier the more you do it ;-), how was it for you? is it really painfree/swelling free etc...? I'm currently walking like a completely drunken jack sparrow, so i think just drunken jack sparrow will be an improvement ;-)

P.S. welcome to the site, i felt the same when i stumbled upon it, you're right there were never sites like this when we were younger!

Ella xxx

gina_loca profile image
gina_loca in reply toElla32

Hi Ella

Thanks for taking the time to reply, sounds like we have had similar stories with both being diagnosed what feels like a lifetime ago! Got away with only 6 ops this year and 2 were non R.A related and only one to go. Think it gets easier as in knowing the process and what to expect but sometimes the results are disappointing and there is always that bricking it element but starting to like General Anaesthetics, think I will need a G.A Anonymous support group soon, getting addicted! On the plus side had my left ankle fused about 10 years ago and although its now caused other joint problems (toes etc) the relief in pain I i got from it was well worth it and has served me well. Keep in touch and let me know how you get on, George xx

Treesha profile image
Treesha

Hello Gina, welcome. I am looking forward to all your tales of woe and laughter! Xx

welcome.. gina.. like the batman poster.. x

PJ68 profile image
PJ68

Welcome too!

I love this site - boosts me no end!

Take care

Pen

Ockle profile image
Ockle

I know exactly what your talking about! Was diagnosed with RA when I was fifteen, now forty five, and like yourself didn't want to get involved in the groups locally as felt I really didn't have a lot in common with the people there, like all fifteen year olds I was interested in music, fashion etc etc. I am new to this as well so looking forward to reading 'stuff' from other people with similar experiences, at last!!

gina_loca profile image
gina_loca in reply toOckle

Hi Ockle

Sounds like we have had a similar R.A journey so to find a forum like this is fab, keep in touch and take care, George x

gina_loca profile image
gina_loca

Awh thanks guys, means a lot to know someone has taken the time to read my blog! More tales of laughter, tears and pain everafter to follow! xx

sylvi profile image
sylvi

I may be 56yrs old, but i still like music and my nails are different colours and my hair has five different colours as well. So to all you younger newbies we are not all Wait for it!!!!! a bunch of old fogies!!!! (for those of you that don't know me yet,i'm joking) xxxx

CathySmith profile image
CathySmith

Hi Gina,

My name is Cathy, I have had RA since 1994 and I thank God for this site also.I have met some really nice ppl and made several friends. Always know if you want to cry,laugh,vent or just be on the funny side this is the place to be.

I am 52 yrs old, have 4 daughters and 9 grandchildren. been married to the greatest man on earth for 33 yrs..if you ever need me I am here for you. good luck on your journey with this horrible disease......have a great and blessed day,

Your new friend

Cathy

((((FREE-PAINLESS-INTERNET-HUGS)))

gina_loca profile image
gina_loca in reply toCathySmith

Hi Cathy, thanks for taking the time to reply and for the pain free hugs! You sound like you have an amazing family and a lovely positive outlook, which I think is half the battle, and a forum like this is fab. Take care and keep in touch, George xx

Kaz1 profile image
Kaz1

Hi, Gina (George ),

Welcome to this wonderful site with lots of friends, support and advice ! Would not cope without it. I am 43 and have 2 lovely daughters to help me, was diagnosed in Oct 2010 with RA and Fibro and am on Sulphasalazine at the moment. Looking forward to reading your blogs !

Karen x

gina_loca profile image
gina_loca in reply toKaz1

Hi Karen

Thanks for taking the time to reply, finding a forum like this is fab, had loads of help from NRAS in the past but its great to talk to other people in a similar situation, take care and keep in touch, George x

Welcome Gina! L:ike you, I just discovered this site over the last weekend. Don't remember how I got to it, might have been from Healthunlocked email and I was curious. I have had Psoriatic arthritis of the Spine, Hands and Feet and Ankles since early 90's. (Date, not my age:) )

It attacked my feet first, had to quit qork, go on disability. I was so isolated from my work friends, I got really depressed. I have 4 sons, and at the time, they were all in high school, and I had been working in a hospital lab fulltime. The severe drop in income was a shock.

Would love to read your tales, and I can continue on after. I'm doing OK now, taking MTX, Simponi and a compound of pain meds allows me to get around the house.

So tell us about you, how has it affected you, what treatments you've had, etc. and, Stay well!

Tinwoman2 profile image
Tinwoman2

Gina-George, love love love your Batman logo!

The drunken swagger of Jack Sparrow, what a Great description of your/our walk too.

We need you & others to lighten our moods, welcome.

Caradog profile image
Caradog

I only found this site by mistake & joined without introducing myself - although I've already left a couple of comments - I hope no-one minded? I live in Gogledd Cymru,(that's n.Wales to all you non-Welsh speakers!).I am priviliged to live in the most beautiful part of the country - however,the wonderful scenery has it's own problems in terms of suffering from R.A. I'm now 45 & have had this wonderful parasite since I was approx 9yrs old. It kicked in with a vengance when I was 20,triggered by a traumatic family incident being aired (by me - I couldn't live with the secret shame anymore).I've tried so many drugs in so many combinations over the years: sulfasalazine,methotrexate (caused chemical hepatitis),azothioprine (stopped being effective) etc. Rheumatology services 25yrs ago were pretty thin on the ground back then,nothing much has changed since then.My consultant says that she doesn't believe that I'm disabled - which is frankly laughable,as R.A. is in total control from the hips down (knees especially!),wrists & fingers are starting to follow too now.They've now found early onset O.A. in my hips yipee! As I'm a good little soldier I've always done what the consultants have said - & I know my own limitations - so no new joints for me!!

Caradog's my name - well it was my Taid's really (it's a royal Welsh male name) & other people are already using both my real names.

Please take pity on a lonely Cymraes (Welsh woman) whose friends,family & health professionals have no idea what it's like to walk a mile (I wish!) in my shoes.

P.S. - Taid means grandfather.

Diolch am darllen - Thanx for reading

Caradog xXx

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