SHOUT OUT LOUD AND NEVER GIVE UP!

carola
carola Member Posts: 840
edited 1. Jun 2010, 13:03 in Living with Arthritis archive
Hi
I have just joined this site today. 38yrs old and have RA. Have had to give up work and I thought I'd post a quick message to remind people never ever to give up and keep shouting!
Having RA means I feel I have lost my identity. I cannot work, cannot go out on the town, wear my glam dresses & heels, cannot curl my hair, clean my house etc. My Docs and specialists are not understanding this. Had to wait 5 months for an NHS Rheumatoligist 1st appointment and now a further 9months until my next one!! Keep calling them to snap up cancelled appointments, gain copies of all your tests (as my GP forgot to forward to my specialist therefore a wasted 5 month wait!), don't take no for an answer from a doctor's receptionist and research research research EVERYTHING for yourself. Take back control of your life. I'm told it gets better so keep smiling everybody!

Comments

  • skezier
    skezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Carol,

    Glad you found the site cus they are a good lot here.

    Yep shouting can help and phoning for cancelled appointments is also a good idea. I really hope it comes together for you soon and they actually help you.

    I haven't got ra I have oa and pa as well as a few other conditions which snap at me here and there but I do promise you once they have come up with some treatment that works it does honestly get easier.

    A ((( ))) and nice to meet you. Cris x
  • speedalong
    speedalong Member Posts: 3,347
    edited 30. Nov -1, 00:00
    Hi Carola and welcome to the forum.

    Sounds like arther will not get the better of you - that's fighting talk gal!!

    I have OA so no experience of dealing with a rheumy team - but 9 months wait for next appointment is definitely NOT right. Lots of other peeps on here have RA and will soon be along to make suggestions.

    I'm 43 by the way ... developed OA in mid 20's and had my first THR at 30, I'm recovering from op on the other hip now so I am on sick leave. I was really struggling at work since October/November and with every day living tasks too - so I sympathise with your predictment. There seem to be quite a few of us young'uns on the forum - but the medics still seem to treat us all as if we are old ...
    and content to lead an ancient lifestyle!!

    Speedalong
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Hi Cris

    Many thanks for your post. Yep, it seems that it can take an absolute age to find the right meds but once found you never look back so keeping my paws crossed for us all.

    This seems a wonderful site - being diagnosed with RA was so isolating but through sites like this and members like you we can all see that there is hope!

    Many thanks again and keep smiling :)
    Carol
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    I love the Speedalong name ha ha!

    Many thanks for your post. Yes, GPs treat us all like the 100yr olds we feel!

    I am positive that I will kick Arthur up his backside however have up and down days but we must all remember that our minds are very powerful things and thinking positive is the most powerful thing we can all do.

    So keep your speed up Speedalong and keep smiling :)
    Carol
  • airwave
    airwave Member Posts: 508
    edited 30. Nov -1, 00:00
    I'm not sure I know what is best, I too have spent years shouting but it seems that the more I shout the less I get heard! I have tried everything, writing it all down, asking three questions at a time, using internet, asking for other hospitals and consultants, researching, all to no avail, so where did it all get me, arthers still here.

    I used to be so sure of life, but now? Don't know, perhaps I'll just stand in line with the rest. So, if it works for you, shout loud.

    8) Its a grin, honest!
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Carola

    Welcome to the site. Yep, wise words, never give up, :) it does not matter what type of arthritis we have, that is what we have to do. I do not always shout out loud but keep on, keeping on is the best way, for me. Finding out things for myself and from others on here is so useful and all the arthritisis interest me, not just the one that I have. I am lucky to only have the one and I count my blessings most days regarding that and many other things too. I have friends and loved ones that have been diagnosed with other diseases that I would dread. So far I consider myself very lucky with what little has been thrown at me to date........

    Look after yourself, no one else will :roll: :wink::D:lol::lol::lol:

    Luv
    Elna x
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Dear Airwave

    Many thanks for your post. It is very difficult to keep positive with your life turned on its head and constant pain however I bet you felt hope and more in control when you were shouting and researching etc?

    I know there is no known cure (yet) for RA however I also know that we can kidnap this Arthur thing and stick him in a box somewhere. Yes, he may escape from time to time and remind us of his presence with pain and swellings however he need not be with us all the time. It CAN get better and will not beat us.

    I also firmly believe that we can educate our GPs and Rheumatoligists so that they gain more empathy and understanding of their patients with Arthritis which hopefully in turn will help future sufferers that sit in front of them.
    Keep positive and keep smiling :)
    C
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Dear Elna

    Thank you for your post and what an inspiration you are.

    Yes, I think too of terrible illnesses other people have and realise I am pretty lucky afterall.

    I love your positivity :)
    Carol x
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Welcome from me too. Positivity is the key, you are certainly right in saying that the brain can affect many things and a more positive outlook does help to combat this foul problem we all face, but arthritis is an insidious disease - tiredness is its major common effect, and sometimes that alters how we feel! A bit og a grump every now and again does no harm, and this is the place to do it.

    You sound a bright and cheerful gal, so I hope you stick around to cheer us, and that we will cheer you. Dreamdaisy
  • bubbles
    bubbles Member Posts: 6,508
    edited 30. Nov -1, 00:00
    Hi Carol, I can only agree with you, although I am so far, lucky with my RA appointments, 4 weeks for the first and two weeks to the next one, I would guess that is more the exception than the norm.

    You do have to shout loud and fight your corner. I am fighting the DLA at the moment and have been for well over a year, will they listen to Drs and Consultants, will they buffalo. It gets you down sometimes, but, you have to keep battling on, despite it being the wrong thing to make those who are ill, either jump through hoops or almost beg for appointments.

    I always take my own notes from any other Dr, wherever I go, just in case and to put them straight into the picture rather than spend ages going over things from the get go, when half of it is forgotten in the mists of time.

    Keep battling, I am right there with you. In fact we will form an army. XXX Take care, Bubbles.
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Hi Dreamdaisy
    Many thanks for your post.
    Yep, on the whole I am positive however I do have my down days which result in me staying in my pjs and lolling about crying wondering why me! I try not to show people around me my down side as it just upsets them as they feel useless they say.
    So, I think this is a marvellous site as we can vent when we need to, hug each other, empathise and most importantly support and encourage one another.
    Thanks again Dreamdaisy and keep smiling
    Carol x
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Hi Delboy
    I bet it doesn't matter how young or old we are ..... we all hobble about like a 100 year old ha ha! :lol:

    Keep positive and keep smiling :mrgreen:
    Carol
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Hi Bubbles
    Many thanks for your message.
    That is a very good idea of yours to take notes everywhere.
    Here's to the Anti Athritis Army :lol:
    Keep smiling
    Carol
  • frogmorton
    frogmorton Member Posts: 27,376
    edited 30. Nov -1, 00:00
    Well Hello Carol

    Very pleased to meet you :)

    If anyone's gonna win this battle i think it will be you :D

    keep up the positive attitude and when you feel in need of some support, ideas or just sympathy - we will be here for you.

    This is a wonderful and inspiring site - this is the best thing you could ever have done for yourself

    Love

    Toni xx
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Hi Toni
    Many thanks for your post.
    Yes, it is a wonderful find this site!
    One day I am up and one day I am down so I am sure I will make good use of this site and receive as well as give support and encouragement.
    You've just got to try and keep on going, haven't you?
    Thanks again Toni.
    Keep smiling
    Carol x
  • chrissie691
    chrissie691 Member Posts: 50
    edited 30. Nov -1, 00:00
    Totally identify and empathise with you hun.

    I'm 38 and recently diagnosed with RA, same problems really.

    I'm beginning to come to terms with the diagnosis and feel a lot more positive than I did several weeks ago. I do think the MTX is beginning to work for me so probably why I'm feeling better.

    I love your fighting talk, u go girl!

    Luv and hugs
    Chrissie xxx
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Hi Chrissie

    Many thanks for your message.

    Wow, we are both 38yrs and recently diagnosed.

    I too am starting to come to terms with my recent RA diagnosis.

    It is like the stages of grief - denial, why me, anger, acceptance etc.

    I too am on Methotrexate and keeping my paws crossed it works.
    I am chuffed that it is working for you - well done.
    Thanks again and keep smiling :lol:
    Carol x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Carol – and welcome from me too! You sound so amazingly positive – I am very impressed and wish I could follow your example! I too have RA (diagnosed at 28, now 42 going on 92 at the moment). Know what you mean about docs not understanding the impact of RA. I’ll never forget my first appt with a rheumy nurse – there I was, reeling from a diagnosis and hardly functioning at the most basic level and all she wanted to do was to show me how to wring out a dishcloth over the tap to avoid hurting my hands when I was “doing the housework”!
    I too have now had to give up work and have spent the past year and a half battling the medical profession to get the help I need (or any help at all really!!!) I really think we should all team up and form that army. Then we could all go en-masse to everyones appointment – that should sort the docs out eh? What a formidable army we would be!
    Thanks for your fighting talk – it’s really cheered me up!
    Love Tilly x
  • joanne60
    joanne60 Member Posts: 15
    edited 30. Nov -1, 00:00
    carola wrote:
    Hi
    I have just joined this site today. 38yrs old and have RA. Have had to give up work and I thought I'd post a quick message to remind people never ever to give up and keep shouting!
    Having RA means I feel I have lost my identity. I cannot work, cannot go out on the town, wear my glam dresses & heels, cannot curl my hair, clean my house etc. My Docs and specialists are not understanding this. Had to wait 5 months for an NHS Rheumatoligist 1st appointment and now a further 9months until my next one!! Keep calling them to snap up cancelled appointments, gain copies of all your tests (as my GP forgot to forward to my specialist therefore a wasted 5 month wait!), don't take no for an answer from a doctor's receptionist and research research research EVERYTHING for yourself. Take back control of your life. I'm told it gets better so keep smiling everybody!

    How true how true, until we are chronically ill we have such blind faith in our doctors and consultants.

    I just posted about my Arthritis being found to be caused by Lyme Disease something consultants and doctors often even refuse to test for ( although tests can miss up to 50% of cases). What madness though to not even test but consign us to a life of pain when in my case simple oral antibiotics have restored my health.

    It took 5 doctors and 3 rheumatologists 4 years to diagnose me and then because of a significant improvement of my symptoms on a chance course of antibiotis.

    That started my steep learning curve and complete disillusionment with medicine when I experienced first had the politics and shinanigens surrounding Lyme Disease and many other illnesses.

    Dr Jemsek pointed out that of the top 20 illnesses in the USA we only know the cause of 2, H Pylori causing stomach ulcers and HIV causing Aides. With all the research available on Lyme Disease and knowing the similarities to syphilis (although much more complex) many cases of lyme disease have been mis diagnosed as so many other illnesses depending on where the infection goes, muscles, joints, nervous system, heart, brain.

    Auto immune illnesses are only assumed to be the immune system going wrong and attacking itself but we haven't finnished writing the rule book on health and all the time new virus and bacteria are being found it is not inconceivable that the immune system is actually trying to clear the body of some infection. Hush my mouth what blasphemy for me to say on a forum for the most painful 'auto immune' illness there is.

    Thankfully I am now virtualy 100% recovered and have no pain, arthritis or disability after 6 1/2 years.

    Keep doing your research and I hope you find something to help improve your symptoms and treat the cause not just the symptoms.
  • carola
    carola Member Posts: 840
    edited 30. Nov -1, 00:00
    Dear Tillytop
    Sorry to laugh but your message of being taught how to wring out a dishcloth made me smile from cheek to cheek as I just know what you REALLY wanted to do with the dishcloth and the nurse ha ha! :lol:
    That really demonstrates the lack of understanding we receive, doesn't it? Especially on the first visit. My first visit to a Rheumy Nurse I sat in tears as I was just trying to digest the fact that my life was changing - although now I am aiming for it to change just for a wee while and not for life - we'll see - it won't be for the lack of trying!
    I love the idea of us all ganging together for each other's appointments ha ha :P
    Have a good day today and keep smiling :lol: Carol x
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi again Carol - glad it made you laugh! I can see the funny side of it now but at the time.....and you're right - if I had been in a better state (physically and mentally) I just might have strangled her with the bloody dishcloth! Ho Hum.

    Please keep posting - your cheery messages are a great antidote - and no side effects either!

    Love Tilly x
  • chrissie691
    chrissie691 Member Posts: 50
    edited 30. Nov -1, 00:00
    Lol I've got my first appointment with the Rheumy nurse soon so I look forward to learning how to wring out a dishcloth!!!

    Your post did make me laugh too! :D

    Luv Chrissie xxx

    tillytop wrote:
    Hi Carol – and welcome from me too! You sound so amazingly positive – I am very impressed and wish I could follow your example! I too have RA (diagnosed at 28, now 42 going on 92 at the moment). Know what you mean about docs not understanding the impact of RA. I’ll never forget my first appt with a rheumy nurse – there I was, reeling from a diagnosis and hardly functioning at the most basic level and all she wanted to do was to show me how to wring out a dishcloth over the tap to avoid hurting my hands when I was “doing the housework”!
    I too have now had to give up work and have spent the past year and a half battling the medical profession to get the help I need (or any help at all really!!!) I really think we should all team up and form that army. Then we could all go en-masse to everyones appointment – that should sort the docs out eh? What a formidable army we would be!
    Thanks for your fighting talk – it’s really cheered me up!
    Love Tilly x

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