Hi everyone,New Blogger! Where do I start??

Having had RA for 16yrs I don't really no where to begin but I'll try my best to share my good and bad times with you all.

Having tried to conceive for 10yrs and going through a failed ivf I then had 2 miscarriages and an ectopic pregnancy. I then got pregnant again but at the same time was having symptoms of RA, just stiffness in the fingers but as you all know that's painful enough. However I wasn't diagnosed with the illness until 12 mths later being pregnant made it difficult to diagnose, they were convinced at first it was Lupus. i didn't really help myself as i refused to take any pain relief or steroids because of the baby so suffer I did.

I eventually gave birth to a healthy baby boy in March 1995, I remember thinking no more hospital treatments,needles,blood tests and all those things we go through but little did I know it was only just beginning.

The baby I had waited so long for I just wanted to hold and be a mum to,not much to ask you would think. But it was almost impossible my hands arms and everywhere just hurt so much that I couldn't even pick him up I felt robbed by the disease. Even holding his bottles.fastening his baby grow I just could not do, why? what was happening to me.

Just writing this as bought back the tears that I thought I had shed for the last time I spoke about this but it still hurts,why?

I spent the next year in and out of hospital and eventually was diagnosed with RA and put on sulphasalazine but it was useless. The thing is with these drugs is that you have to wait 3 mths for them to work before you can try something else.

This is how my life as been for the past 16yrs just trying new drugs because other have failed or just don't work, and now after 11 operations and endless times in hospital (I'll tell you more another time) am on Rituximab, MTX and others which seems to suit, doesn't totally control the disease but that's ok with the help of my husband and son and some other members of the family and of course a good rheumatologist and fantastic nurses I know I will somehow be ok.

I'm also hoping that by talking to other like yourselves will help me deal with the past and I hope I will be of help too.

I hope I will be able to share more with you soon but it still hurts so much to write or think about it,so for now that's about it. xxx

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7 Replies

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  • Hello Mand

    Welcome to the site............You are not alone, so many of us have similar stories and this site is such a comfort and support, People who really understand are ready to listen and offer all their knowledge and advse to you.

    Pour it all out, it will help and you will get responses.

    Take care write again when you feel able Sue x

  • Hi Mand,

    Welcome to this blog site, it is one of the best tools we have as well as the forum,

    Gosh you made my eyes water, I too lost for babies before I had my wonderful son and then a girl 15 months later.They both ended up in Special care Baby Units as their lungs collapsed at birth. They are both healthy very tall strong wonderful children, aged 30 and 31; I hope they don't read this!!!. My son has given us 2 georgous Grandchildren a little boy 2 3/4 and another boy born New Years Eve 2010 so he is 2 months. My daughter I wait.

    I didn't get RA until 2 1/2 yrs ago. You have been through the mill and I'm sure that with the wonderful people on this site you will be able to unburden your self wer'e like cheap therapists and if one person hasn't been where you have I would be very suprised. have you read the blog about the trials for different medications, I'm on one called BRAGGS which is looking at our Genes and if there is a common denominator that says Humira will work with this Gene or Sulph will work for that Gene which will hopefully make the treatment so much better but thats in the future. This is the now.

    When you gather your strength come on again. Have you ever spoken to the NRAS helpline, its 0800 298 7650 they are wonderful and when I was in denial about RA they helped me come to terms with it well almost. Anyhow blog away Mand we are here to help if we can.

    best wishes

    Tricia

  • Hi Mand,

    Great writting for your first blog!

    well done I look forward to reading more from you x

  • Hi Mand

    Thanks for commenting on my first post. Just read yours and it is so moving.

    It is definitely good to share our experiences here and be honest about how we're really feeling. I think we often hide the true extent of our pain from our loved ones and the people around us and it is good sometimes to be able to let it all out with people who understand.

    Look forward to sharing the good and the bad.

    Take care.

    Ann

    x

  • Hello and welcome. Looking forward to reading more blogs when you're feeling up to it. Life can be so hard and so cruel but we do have our babies and that to me is all that really matters ;) Take care, Jo x

  • Hello & welcome, great pals here with lots in common:)

  • Hi Mand, sorry only just arrived at this point ... I have a tendency to do things back to front, but get there eventually!

    Your story rings so many bells with me. I was diagnosed 23 years ago and have run the gamut of medications and many surgical procedures along the way. Currently on my second anti-tnf but things have not been good for the last 12 months one way or another. I too struggled with a new born baby (4 of them actually including twins) so know exactly where you are coming from.

    Apart from the joint damage which travels with me constantly the past is, for the main part, binned. I rarely consider the time before RA, it's not something I personally want to dwell on. Life for me is now. RA closed doors but it has also opened many more.

    I hope you find much help and friendship from the site. As Tricia says the NRAS helpline is a wonderful resource and they can always link you up with a volunteer if you wish to speak to someone. Look forward to reading your bloggs,

    Lyn x

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