Although I've been a member of Lupus UK for 12 yrs, I've never heard of healthunlocked until attending a lupus awareness event yesterday.
Over the years as a sufferer of Lupus, I'm not sure if I should say im fortunate enough to be relatively ok most of time or seriously ill, so I don't have the day to day sickness experiences some people have. That said, I have had 2 serious flare ups in 7yrs; the lsdt one resulting in being in an induced coma and seeing various psychiatrists whilst in hospital for 3 months and part of my aftercare.
I have recently moved home to a different area and been told the doctors and hospitals are better, which I will soon find out.
I'm now self employed, which has taken a while to do. Before I was in production, which was always a costly struggle to manage my health.
Hopefully things will get better going forward.
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awareness75
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Hi awareness75, good to have you with us! 🤗 Hoping things are on the up for you too, healthcare DOES vary from 1st to 2nd world across the UK, and its basically Russian roulette, how it ends up for some.
Very glad you're on an even keel at the mo, fingers crossed your new team will rise to the challenge of your needs. 🤞 🤞 🤞
If you wanted to share more about your experience, it could probably help a lot of folks. I've been through the mill myself with work/no work/mortgage ('yup, some single women have mortgages, doc') and I'm still fending off my GP's keenness to write off everything I say to 'health anxiety' (I have partial nose collapse due to inflammatory disease - 'it's as plain as the nose on my face, doc')...😋
Hello, thank you for sharing your story. It is always helpful to hear how other people's lupus manifests. You have clearly overcome two tremendous flares; one involving an induced coma - and it is incredible to read that you have made the transition to self-employed. I do hope that you find even better support in your new home area. Again thank you for sharing your inspiring news. With very best regards, Lily
First of all, and most importantly, WELCOME! I don't actually have 'Lupus' myself, I'm a Vasculitis Patient, but there is a good Overlap of people here- all 'Immune- Compromised'. I always fell that, arguing over exactly 'Who Has What', is rather defeating the object of these Forums.
I'm not Prying exactly but, it might be useful to us, to know a little more about you. You say that you have recently Moved so you may, very well, not know about the Health Care in your new area. One Thought though, are you anywhere near Cambridge? It's just that Dr David Jane's Team, are based at Addenbrooke's Hospital. His Team are perhaps more 'focused' on Vasculitis but it, may very well be, a good place to start.
I hope that your 'Move' is/ has gone/ going well awareness75, and a great 'Name' by the way. Once again Welcome.
Ive just moved from Worcestershire area to Stourbridge/West Midlands. All of about 18 miles apart, but the treatment especially in the Dudley hospitals, which is where I'll end up, is miles apart better equipped than Worcestershire. I'd been going to Worcester for 12yrs and although I live nearer to Birmingham, because I don't have a problem with my kidneys, I was sent to Worcester. In a flare up, Lupus effects my heart and lungs. The Worcester Rheumatology clinics are separate from the hospital, so the ward I was in closed, we had to see locums for 2yrs and our nurse specialist left early this year. Im glad I'm moving on to better, but feel for those left behind there, although they have finally found a good Rheumatologist for now.
Incidentally, you mentioned 'overlap'. That is a word I heard a lot over the years, as Lupus mimicks so many other conditions. However, although RA overlaps with Lupus, of all the years going to Worcester, there was never no references/posters/information on Lupus. Made you feel very isolated and you don't belong or recognised there.
I'm really glad to welcome you to the LUPUS UK Community Forum and I hope that you'll find it a helpful place for information and support.
Please keep us updated with how you get on with the new doctors and hospitals and whether you think they are better than who you were under previously.
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