Well, camera crew came this morning and it was such fun!
We spoke about how I was first diagnosed and the impact it had immediately on my life. And then the impact of now.
He asked what I would say to anyone newly diagnosed.
We spoke about treatments, impact on life and my business.
After the interview they filmed me working and then getting up to get a drink of water. Then we aimlessly pointed at things in the garden to fill it out.
It's going to be shown this evening and then throughout the day tomorrow. Plus on their socials and YouTube.
Well done. It’s good to have a positive view despite the pitfalls.
I wonder now if there should be representation from someone older who has been through all the ups and downs, medical advancements and perhaps joint replacements. That is to say the focus on the more difficult side.
So far we are not seeing the real struggles of those with multiple AI conditions and for whom, medication is a battle or doesn’t work. If we are raising awareness then it should be a broader view, because not everyone copes so well.
I’m not thinking of me here, because I do cope and I’m not doing too badly but I am very aware, having witnessed a relative who had all the associated problems, of what could be.
A rheumatologist once told me, soon after finding a drug that ‘worked for me’, to ‘make the most of it, while you can’.
Our lives are dictated by the medication we take; whether it works or not, whether our bodies can tolerate it, and yes we can help things along by choosing a healthy lifestyle and diet, but RA especially sero-positive (?) is systemic and chronic,. It is going to be with us throughout our lives and it may well cause a host of problems and complications.
It is not visible to most, and most folk see it as ‘a bit of arthritis’.
Great answer, but as someone who is sero negative, we struggle just as much as those who are seropositive. We usually take longer to diagnose and don't respond as well to meds (amongst other issues).
Thank you so very much for this kind, reasoned response. It bought a lump to my throat! Whilst it's wonderful that some with RA can have relatively normal lives, there are those of us whose lives are anything but normal. No matter how positive/chirpy/upbeat I've always tried to be, the brutal reality is that it's never changed the course of the disease. Some of us have been unlucky. Not our fault or "failing," just pure bad luck.
I'm 54, and developed JIA (seropositive and aggressive) at 13. Hip replacements (first time) at 19. Thirty plus operations overall (more in pipeline), complete loss of sight in one eye despite many ops, and ongoing eye complications. I've never been in remission, and no treatment has ever worked very well. I've had numerous stress fractures due to 30 years of steroids, and a broken thigh bone that won't heal properly despite 2 major surgeries so far. At present, I can only walk 10-15 steps using a gutter frame or gutter crutches. Otherwise, it's a wheelchair.
Apologies as I'm really not trying to be a "moaner" or seem bitter or elicit sympathy (not my thing)! I'm lucky as I've got a caring husband, family and friends. My medical care has mostly been very good too. I'm extremely grateful for all those things.
I just wanted to make real the other side of the disease, as you were kind and thoughtful enough to bring the issue up. Thank-you. 🙏 As for me, I'll keep plodding on like always, and hoping for the best.
I hope everyone stays as well as possible - for them. Best wishes. 😊
This is sadly the reality for some .. a lifetime of pain and struggle. I would like you to be interviewed along side those who do well on medication can and gives people back their lives and the positivity will give the newly diagnosed hope but I still feel people need to be educated on how bad and life limiting this disease is for some . I include medical professionals.
Every body was asked by NRAS to help support RA awareness…HKG stepped up & represented & described this rotten disease very eloquently…..for everybody. Surely showing it is possible to have a life after a RA diagnosis is good….…it gives people hope…..without that we might as well all give up.
Why all this criticism for somebody who gave up her time & stood up for everbody suffering from RA?
Nobody had a pop at Kirsty???? ….when she spoke wherever having had the best private treatment money can buy …. Why all this negativity now?
I guess there is no pleasing all of the people all of the time?
Please read my reply to HKG it was not a criticism and it’s not all happy ever after . For some it’s a living hell and nobody wants to talk about it . I do not include myself in this
I'm in a similar situation and sometimes get questions about have I not tried such and such a medication (usually MTX) ? As if MTX is the cure all for everyone, and there must be something else wrong with me if I'm still unwell.
If only MTX were a magic cure-all, eh? Would be much simpler (and cheaper)! At least nowadays I don't really get told to try this or that food or supplement, bracelet, bizarre "cure" diets, faith healing (yes, really) etc in order to "definitely" be cured.🙄 Think I must have been given up as a lost cause!!😆😆
What they didn’t show was I had to sit down after walking just a few steps. But my slant on this was for newly diagnosed to realise that there is hope and at the same time, attempt to get across that it’s more than joints. It was a 90 minute interview edited to 3.5 so couldn’t cover everything. I think Jack did a great job.
Feel free to do an interview 😊 I did my best. I find it rather disappointing that you feel I should have been more negative. That’s not in my nature so I never will be. No one that’s newly diagnosed needs to hear negativity as they need hope. And that’s what I put across.
It wasn’t a criticism of you. I felt your story came across very well. The struggles of Kags, Mmrr, Deebs their stories are harrowing and this part of RA is never discussed . I think giving hope to newbies is great but.., there are always buts and they are ignored not by you or the NRAS videos they are just not heard . I’m lucky in comparison.
Thank you so much! Amazing how deceptive confidence is. 30 mins before they came I stuck the mascara in my eye and didnt venture far from the bathroom 😅😅
Found it, you were very good, well done. The guy in the comments below is a cheeky sod!!! He said "People with arthritis are just lazy. Get them grafting like the rest of us"! 🤬🤬
thank you! I did make the error of reading some of the comments on YouTube and Twitter. The ignorance proves that the message still isn't being understood. But, some people are just ignorant twonks
I wouldn’t worry about comments like that - I think there are sad and ignorant trolls out there who make a hobby of trying to upset good people by coming up with rubbish. To be honest I saw it and just thought ‘Typical there’s always one’ and ignored it.
So keep smiling, as footballers say in TV interviews ‘you done great’, you really did and you’ve done something that none of us had the confidence to do so thanks from your tribe x 🥇
WendyNorman - I picked up a copy of Woman’s Weekly to tidy the place a bit before my zoom Pilates and thought ‘I know that face’ turned to P 20 and there you are telling us all about Chatty Cafes. Chatty cafes and chatty benches are wonderful - although I tend not to need a notice to start a conversation it’s nice to know that conversations are welcomed by the people who sit there - well done you 😊
Hahaha. Sorry you were confronted with my mug again!
Yes, I'm all over the place at the minute 😅😅. That was organised by the Chatty Cafe boss.
Wish my parents were alive to see this. I hope they'd be proud. My aunt said she's very proud of me so that's beautiful. It may look as if I find it easy, but I don't and have to take a big courage pill 🙂 But I can't deny I'm loving it.
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Latest part of my saga
Waking Headaches Part 2
Short and sweet in parts
