I was overwhelmed by the number of lovely positive responses and as some of you have pointed out, medication is only pone part of living a good life with RA. Personal circumstances and our relationship with our care team are the other half.
I was blessed with understanding and support from my family. Consultant(s) and nurses treating me with respect and involving me in every decision that was taken right from the start. My first consultant emphasised the importance of self management and exercise. I was helped to set realistic, achievable goals and gradually learnt how valuable a tool that is in self management. This includes rewarding myself for achieving them and just accepting that some things may be out of reach at the time.
So thank you doctors, nurses and everybody else in the care system for helping us. Thank you.
Written by
stbernhard
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Another lovely post stbernhard, when things come together, are pro active, positive, encouraging and supportive from all areas be this health care professionals, family, friends and our own sheer determination this surely leads to a better quality of life. Again it is so important to have realistic, achievable goals either from ourselves or healthcare professionals. So thank you for posting this encouraging post, take care x
Well said stbernhard .....we are intelligent human beings & if we cooperate with our medical team & don’t try to second guess them......there is a good life to be lived with RA.
Maybe not the life we had prior to RA, but definitely good.
Reaching that life doesn’t happen overnight, but patience & perseverance will eventually be rewarded, although at the beginning of the journey that is very difficult to believe.....particularly right now with the overstretched NHS rheumatology resources.
I'm in remission at the moment, have been since early 2013 thanks to enbrel. I've been blessed with a good RA team so far. If ever I've phoned when struggling I've been seen in a few days either by a specialist nurse or my consultant. I was once told my consultant keeps a few appointments back on a Friday for emergency appointments. One of my specialist nurses told me they like to react quickly and tweak a patients medication before it gets too bad.
It does that sometimes, you have to wait and then click again. Also, sometimes if you click Like and forget that you've done it and click Like again, it will come up as Unlike because their system won't let you Like more than once. Does that make sense? 🙃
Another lovely post stbernard. Thanks so much for writing them. I still class myself as a newbie to the world of RD and what it may bring.
One thing I can say with certainty that I feel so well looked after by all of my health care teams, and friends. I have my GP surgery doing my routine blood monitoring fortnightly still even with the pandemic and us being in tier 3 and providing shared care with my rheumatology team. Even call me if a problem with my bloods to discuss them. My chemist is so good at getting my meds to me, my rheumatology team are so supportive and very quick at getting back to me. My rheumatology nurse must regret the day she gave me her direct email address. 😂. In all seriousness though I only ever contact her if I am struggling. My home care delivery team who provide me with my MTX injections and goodies like sharps bin, and my physiotherapist who has really helped me both physically and emotionally to start to adapt to life with RD. My friends and family who are so supportive and always there at the end of the phone no matter what the hour. My employer who has provided all my reasonable adjustments and now continuously working with me around being as flexible as possible with my working days. NRAS always there and so supportive and you lovely lot too. I just wish it was like this for everyone. There have been many years and some battles along the way I can’t deny. I am on a rollercoaster still with my RD and trying to find the right meds for me that will quieten down my RD but feel so blessed to have so many fantastic people right by my side to learn to appreciate the good days, accept the bad days and learn to live a positive life with RD. We are all warriors! x
It is a hard road we walk and sometimes difficult to remind ourselves of the positives .
Without all that you’ve mentioned, we would be in a much darker place.
I know not everyone has the same experience, and not everyone can rely on, or benefit from good family supports. But your post illustrates when all these things come together, the positive difference it can make.
Your post has reminded me how lucky I have been ( continue to be)...... and I thank you for that xx
Yes, many of us are lucky to have caring support around us. That makes it easier to fulfill our side of the bargain. Stay well and positive. Upwards and onwards. 👍😀 xx
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