My very positive blog!

My very positive blog!

When I was diagnosed I searched desperately for any hope, when I found this site I found it from many of you, Gina’s especially as whenever I read her blogs I always felt up lifted as (I hope you don’t mind my talking about you Gina!) in case you are not aware she achieved remission albeit a ‘chemically induced remission’

Last November I was lying in bed, beautiful Baby Amy just 3 days old in my arms, snowing heavily outside listening to the radio waiting to hear if local primary school would close due to weather, it was, so my 10 year old son would be home with us along with my husband we were all together at home and snug for the day, a lovely song came on the radio and I had a cry as I was so very happy and content and my life felt complete.

5 weeks later I woke up in the middle of the night, I was in pain everywhere and couldn’t move or get up, this had been building up for a few weeks, I already had my phone beside me so I rang my husband who was on a night shift, I was so frightened in case Amy woke up and I couldn’t got to her, he came home straight away, rang our local A&E who prescribed some strong painkillers to help me through the night. That was our lowest point, we both thought this what our lives were going to be like from that moment. I was waiting to see the rheumatologist but my doctor had confirmed that it was very likely that I had RA, maybe this was due to a RF result of 1200 (when 400 is high there was no doubt)

The following weeks were terrible, there was so little I could do, when my husband went to work each day I faced the difficult challenge of looking after Amy, she wore pyjamas constantly as I couldn’t cope with poppers, I used my teeth to undress/dress her and always had to leave it to my husband to bath her. The few times I did get out of the house was to go to the doctors, I’d sit in the car with an ache in my heart to see mums out pushing prams and I remember seeing a mum on her bike with baby in her seat, I was so jealous, envious and heartbroken as that was something I had dreamt of doing, most of all I was scared, what was going to happen when Amy started crawling, walking and just getting too heavy to lift.

At the end of February I saw the consultant, even before I sat down he shook his head and said it was RA, he continued to assess me, gave me a das score of 7.6, followed by a couple of steroid injections and a combination of meds; Naproxen, Mtx, Hydrox and sulphasalazine all to start at once using the step down method where they treat it aggressively, he would see me in a month.

The following night I bathed Amy :)

I’ll skip a few months to July, I was feeling much better, not great but I could do so many things for myself now, my DAS score was at its lowest at 4.6 so in my consultants opinion not good enough so I was started on Enbrel in August.

4 weeks later I realised I wasn’t hanging over to get undressed (you know what I mean?) then at 6 weeks I noticed that after walking a little that my limp was gone, I could open tins almost, 8 weeks I can peel an apple, not struggle with getting Amy in an out of car seat.

10 weeks later – In the last week I have worn a small pairs of heels to go out for coffee!!!!!; had a bath myself (after getting stuck previously I was too scared); danced around the house with Amy in my arms and wait for it....... have been out cycling with Amy happily babbling on the back :)

I saw my consultant last week, I didn’t ask him what my DAS score was this time, I know I’m doing better than I ever hoped, I only have a few swollen finger joints, maybe some aches but nothing to complain about. I am so very lucky and live every day feeling thankful that for now my meds are working.

Thanks to so many who have helped along the way!

ps. Told you I do it Cathie!

14 Replies

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  • Wiliby, that was a joy to read - I'm so, so pleased for you!

    Your story so far will give real hope to those recently diagnosed who are struggling in those early days post-diagnosis.

    I'm especially pleased that you are able to enjoy your lovely baby now:-}

    Hugs,

    Cece x

  • Thanks Cece,

    I've never been a religious person but I find myself now thanking God on a daily basis :)

    x

  • Hi,

    Seriously I am crying, I am so happy to read your blog, it will give hope to any newbies that find themselves in the very scary situation you and I both have described, I totally know what you mean about seeing other people do things, you used to take for granted and wishing for your life back. I can only imagine trying to care for a little baby as well.

    I wrote my blogs previously for this very reason. The fear!! Where will it all end? No we are not cured, but we are better and for most people this is achievable, though there is no time frame as we are all so different.

    I remember walking a few feet and having to turn back, going to a party and being so different and unhappy, it is so fast for some of us and the feeling of fear & loss is overwhelming. No nurse or doctor can really understand, only us who have experienced it.FYI I sorta ran for my bus today, a spectacle, but a run none the less :)

    This site is so valuable, I hope all the new people I have seen on here recently keep blogging away, with positive stories, and of course the reality of living with RA.

    I have picked up so many tips from pals met here. Only the other day I spoke to Ailsa in NRAS, and she gave me some invaluable tips on my upcoming surgery that only someone who had been though the same could.

    So happy for you Williby, great blog.

    xxx Gina.

  • Thanks Gina, I was a bit apprehensive about blogging this as I didn't want to sound boastful, when I was first diagnosed I didn't think feeling like this again was possible but as I said, yours blogs really helped!

    You mention fear, does that ever go away for any of you? not so much the RA fear I think I can handle whatever happens but it's the medications that send me in a panic, the slightest headache or dizzy turn turns me nutty :)

    Impressed with the run to the bus :) and thats with your dodgy foot! xx

  • Echo the above posts .Fantastic blog and great news,i hope it continues for you.I was lucky in that my children were all over five when i wad diagnosed so had a bit of independance,i don't know how i would have coped with a newborn.Well done to your husband too for his support - they are often forgotten but RA affects the whole family

    Take care and enjoy your lovely family - not a good day but this has put a smile on my face

    Julie xxx

  • Thanks Julie, I'll pass that onto my husband also. Hope today is a better day for you x

  • Wow Wiliby,

    I remeber you asking on here how you were going to cope with your baby.

    So its so uplifiting to here you tell your story and how well your doing now.

    Its storys like yours that are keeping me going with the hope that I get better than I am at the moment soon.

    Ive been through the dmards stage and felt a tiny bit better but still had a DAS of 8.3 then just had my six month review off Enbrel which I was feeling another bit better and thought that was it but again my DAS score is still at 7.1 so I'm now on route for another method off treatment not sure yet I see the consultant next week.

    But thanks so much for sharing your story, it makes a change to here a positive.

    Take care and hope you contiue to improve xx

    Julie x

  • Gosh Julie, I hope this gets sorted for you soon, I can't imagine how you say you feel a little better with a das of 7.1! Your always very supportive but you really are having a hard time, I remember asking that question about how I was going to cope, I sooooo thankful to my amazing consultant!

    Tak care and let us know how it goes for you next week x

  • What a fantastic blog.. so pleased for you xx

  • Thanks Alison, you've been quiet recently, computer sorted out now? x

  • Lovely, lovely blog, I am reading through tears too.

    .....eve x

  • Thanks Eve, happy ones of course :) x

  • fantastic news !! ...there is light at the end of the tunnel ! well for some of us, x

  • Hi Wiliby. what wonderful news. so pleased for you. Lovely picture of you and Amy on the bike. Hope we can all get to that stage in the not too distant future.

    At present, I seem to be in a sort of remission in that I am relatively free of pain in the joints and seem to be able to walk better and further than I did 2/3 months ago. My ESR score went up to 25 on my last blood test which I think may have been down to the infected tooth as well - that was the highest it has been for many months. My CRP also went up to 7 when it is usually below 4 so something was going on.

    Keep it up Wiliby and enjoy your baby. It is such a lovely age so full of curiosity and enjoyment of the world around us. LavendarLady x

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