Hello all you lovely fellow Lupies. A friend in America sent me this link which has short videos from Lupus organisations from UK and USA. They are very informative and some are very entertaining. I found myself nodding in agreement and smiling at some of the descriptions and illustrations in the cartoon versions.
I hope you find them of interest too.
Hopefully you can open this.
I’m sorry but the video has come up rather than the link so I don’t know if it is possible to access other videos after this one as there were some good ones from Lupus UK as well as others. Hope you all find this one of interest anyway. 🤗😘xx Spotty
So pleased spotty you've posted this video. Its playing well for me so should be ok for everyone. It sums it all up beautifully. Thanks so much for your good wishes kate and we'll catch up again properly next week.
Keep well and enjoy the weekend. Xx❤🌻❤
Glad you found the video worked okay Misty. 👍🏻 I’m just disappointed the extra ones can’t seem to be accessed now because there was a great one from Lupus UK in cartoon form which was excellent and very entertaining. Never mind. I’ll be thinking of you on Tuesday Misty. Until then enjoy the weekend - beautiful weather here so hope you are having the same. 🤞 Take care. 🤗😘💜xx
This is the Lupus UK video I thought was really good and entertaining. Hoping you can access it. 🤗😘
Thanks for posting this video too spotty , didnt realise there was a series of them. I do agree with you how this one sums up all the difficulties we have living with such an unpredictable illness. It affects every aspect of our lives. Its lovely they did it in a format everyone understands.
We've got this lovely sunshine too but oh how we must be careful in the sun. Its powerful at this time of year .Glad you have it too.
Take care and we'll catch up again soon.
Xx🥰🌻🥰
Glad you enjoyed this 2nd video too Misty.👍🏻 Oh yes, you are so right about having to be so careful on sunny days 👒🕶🧴when that monster 🐺 inside us is desperate to break out! I love the sunshine from indoors. 😉 It just makes the house so much brighter and warmer. I love that. Or on hot sunny days I love to sit out in a shady part of the garden, not that I find much time to just sit! 😂🤣. Take care lovely Misty. 🤗😘xx
Really interesting info and videos, thanks for sharing Spotty-ewe ❤️🥰💕
I’m so pleased you found them interesting EDD. It is so reassuring to know we are not alone in what we experience both in symptoms and how others without Lupus often view us. Hoping you are keeping okay just now. Take care. 🤗😘💜xx
Yes thank you Spotty-ewe, I’m plodding along slowly. I hope you’re doing ok. You take care too 🥰💖💐🌝xx
Good to hear you are plodding on albeit slowly. I’m not too bad thanks Diane, could be better but could be a lot worse. 😆 Thanks for your kind wishes. Have a lovely evening. 🤗😘🌷💕xx
❤️🌺🍀🌞🌈💐💕😘xxx
Fantastic Spotty-ewe! I will send this on to those of my friends who are still engaged... I have had eye-rolling and tut stuff... Yes, that's very difficult and hurtful :(. And that second animated video is wonderful too - saw that when I was first officially diagnosed 3.5yrs ago. Currently I'm downgraded from mod SLE to "Lupus Like Syndrome" as seronegative, which was really hard to deal with as nothing had changed in my symptoms - apart from getting a little worse and more complex, so am waiting to see Dr D'Cruz at Lupus Centre in London who might put me back firmly in the SLE box, although now I been rediagnosed with Sjogrens too so who knows! My Rheumy has been allover the place comment-wise about my diagnoses and just says "tell your friends you have Lupus, as it probably is". So - I shall! Thanks again and hope you are doing as OK as possible. Literally just had my second jab so taking it easy today! D x
I’m glad it will be of help to you D. Yes, some friends just don’t get it do they? Indeed some family don’t get it either. And if these videos don’t help them to understand that’s their problem, not ours. How strange your diagnosis has been changed, but I’d take your Rheumy’s advice and just say it is Lupus because it likely is. I’m not bad thanks D. I had my 2nd Pfizer vaccine on Wednesday and was extremely fatigued that night and Thursday with a dull headache, but felt back to normal yesterday. A feeling of cotton wool in my ears today, which I had after the first vaccine and which lasted weeks, but if that’s the only side effects, I’m happy with that. So you are wise to take it easy for a day or two D. Take care. 🤗💕xx
Awww sorry to hear that Spotty... I was poorly after first one for 3 days and pretty rubbish off and on for following months. I do have the cotton wool ears affair too.. today also. But am having MRI for my ears tomoz due to hearing loss last yr and much worse tinnitus since although always had it. Hoping I’m ok for tomoz... but have a diazepam to take to chill me out for the scan so hopefully won’t really care one way or the other 🥳. Yes my only close reli (brother) has always been extremely dismissive since diagnosis which really hurt a lot. But it’s quite normal for how he is with me so shoudn’t take it to heart especially as he’s v poorly now poor chap. Hope you have good support amongst the not so.. And of course we have all the wonderful peeps on here🥰! Thanks for kind words, virtual hug xx
Thanks for your sympathy D but I feel extremely lucky it hasn’t been worse, and my cotton wool ears are nothing to your hearing loss. That’s no fun and another thing people don’t often understand and just end up avoiding speaking to you. I’m sorry to hear about your brother - that is tough. My hubby and best friend are VERY supportive so I’m lucky there, and as you say all the lovely folk on here are brilliant with their support, advice, understanding and humour, and most of all their friendship. I hope all goes well with your MRI tomorrow D 🙏🏻 and enjoy the effects of the diazepam!😂 I had a MRI brain scan a few years ago and apart from the clanking noises it was no bother. Let us know how it goes. Healing hugs 🤗💜x
Thanks Spotty! I've had 3 previously so aware of how it is... I'm becoming an old hand - in fact, I have two 🤣!! So glad you have great support from your hubs and bestie.. wonderful. Hope you have a lovely eve - and more hugs back xx
Thanks D . Don’t forget to let us know how you get on. 🤗😘xx
DJK99 -
I know it may feel like a « downgrade » but that really is not the important thing. Experts like Dr d Cruz will attempt to describe your illness as clearly as possible. But the main thing is he will use his level of experience to make predictions and come up with the best treatment plan for you.
The best way I have heard it described is from a rheumatologist. He said his patients all have their unique shades. 🌈
Best of luck. Glad you are seeing an expert.
Xk
Thanks so much KayHimm... well I definitely have shades 
depending on the time of day - as is the case with most of us! I'm grateful for my rheumy's suggestion to refer to Dr D'Cruz, and agreed for that option... when I shall see him, well, let's face it... could be months and months. Greater things going on with my poor brother right now, so my stuff is deal-able with.. and that means it must be.. compared to so many poorly folk on here. Hug to you for caring. Hope things as best as they can be for you. xx
You have a really good rheumatologist. That takes a lot of confidence and concern to refer a patient to a physician of the same specialty.
I hope it isn’t too far away. The UK seems to have pulled through a rough time. Appointments may be getting back to normal soon.
Though I don’t live in the UK, I have been pretty involved with patients who have seen Dr. d Cruz. He is one of the sort of international experts in lupus. Never heard anything but that he is an extremely caring doctor.
I do hope the very best for your brother. Heart-breaking to have a sibling who suffers.
😍
Thank you KayHimm. He is my last remaining close family, and from our very difficult upbringing together. A tipping point moment is finally here, to help him recognise abuse is going on, difficult as it may be to recognise as he invited it into his life, unlike the situation we were born into and therefore seemingly had no power/choice over. It's the wheel effect. Luckily I previously made my way in life into Social Work (unsurprisingly as so many damaged people, and therefore utterly empathetic, in the caring "industries" do) and know what to do, and have done in recent weeks. Apparently we all have a story we are born into, and that story repeats itself wherever and whenever in our lives, for us to learn and break free from. His story is my story, although I am way ahead of him, and we are, both now, on the brink of recognising, dealing with and healing from his current one, rewriting the previously recurrent script of our lives. It is a breakthrough, so whilst in a very difficult scenario, it is quite understandable, but no longer inevitable. Oooer, heavy.. but have learned a lot in the past year, as so very many of us (if not all) have, so not only vegetating at home ;). As for me, today is a good one, as my brother is on the brink of true recognition of, and actual, safety... and this reduces inflammation in him - and me. xx
Thank you so much for sharing these with us, Spotty-ewe. Very informative and easy to watch.
Healing hugs.
Hi Pumpkin, so pleased to hear you found the videos informative and easy viewing. Hoping you are keeping okay🤞 and enjoying your weekend. 🤗😘x
Thanks spotty thought the video was really informative xx
👍🏻👍🏻🤗😘x
This video made me laugh... the bit about it being like a lottery really resonated.
I saw the kidney doctor last week. Everything is going really well and I am about about to start reducing the MMF. I want to take a lower dose because I know it's a heavy duty drug (it was my idea to reduce) - it should be a rejoicing moment that my kidneys are functioning better and a lower dose will reduce the burden on my liver etc. But the same time the whole thing is tinged with fear because I just don't know what will happen next. Lottery!
Great news to hear your kidneys are functioning better Winter👏🏻👏🏻, but I know exactly what you mean about being scared to rejoice because of what might happen next. Glad you enjoyed the video - it appealed to my sense of humour too yet at the same time was spot on how Lupus affects me and makes me feel. I suppose we have to live for the moment so celebrate your victory today🥳 and worry about what the lottery throws at you when it happens. Take care Winter. 🤗😘🌸🌷xx
Thank you so much for posting these spotty- ewe. Like many of you I’ve lived with lupus for well over 20years and still find it hard to explain the unpredictability of it to others. These take it back to basics & will be helpful for those situations when I need to spend days resting / cancel plans at short notice/ run late etc . Thank you 🙏
I’m so pleased you have found them useful even after having Lupus for over 20 years. It is indeed such an unpredictable condition which can spoil plans and days out and even holidays if a flare starts as it has done for me several times. Hoping you are keeping as well as can be at present. 🙏🏻 Take care. 🤗xx
Thank you - hope you’re well too. 😀
Still upright thanks. 👍🏻 😁 xx
Thank you so much for sharing with us. I’ve sent the link to some of my friends as I sometimes find it hard to explain what it’s like to live with Lupus. It took me sometime to actually understand and adjust ...
Yes, they are very handy for that purpose as is the chart. It is difficult to think of all the symptoms we suffer when asked, and after all who wants to remember them 😩 when we’ve managed to get rid of them for a while? Yes, it does take a long time to understand what our conditions entail and even longer to adjust, but this forum is brilliant for both those reasons. Unfortunately I didn’t discover it until after I’d been diagnosed with SLE for 7 years! Better late than never and it has changed my life. 😁 Take care April. 🤗x
Thank you. You take good care of yourself too x
Great videos thanks for sharing 🤗
So pleased you liked them MrsG. 👍🏻👍🏻 xx
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