[united]

Hi am 59yrs young,was diagnosed with sle at age twenty,after suffering repeated attacks pneumonia,kidney infections,and pericarditis,finallly diagnosed treated with steroids,which controlledthe sle.as the years have passed by no major flareups,worked foe 23yrsin nhs.following heart attack .in 1990 had to retire on grounds of ill health had coronary by pass surgery and although the operation was successful was told the sle had damage my heart this wasnt helped by sticky blood syndrome,since then briefly i have suffered another heart attack,stroke,and end stage renal failure,treaed by dyalasis 3 times a week,all my problems have been ascribed to sle damaging my organs,like lots of others i have jiont pains and fatigue,despite all this i try to lead a full and normal life with the help of my wife and,for my sins i support man utd,visit ot regular with my son.i have found the experience of telling my story to peple who understand comforting,after being met with so many blank faces,,or strange looks when asked what your problems.ie take a bucket load of medication.apologise for length,united.

 

[Clare.T]

Wishing you a warm welcome to the forum united

I would say you are one of those here who has had lupus the longest and suffered very seriously from it too, which I am sorry about. It is good for those newly diagnosed to realise that enjoyment of life is still possible after diagnosis even if it is on very different terms from what one had hoped for.
Yes having lupus is very lonely and often isolating even with some good family support. I hope you will find the forum helpful and maybe be able to help others.
I have been diagnosed for about 36 years now but my lupus has been very mild relatively. All the same it affected me more than I would have liked. It vaguely crosses my mind from time to time that if the standard of care and medical knowledge and drugs had been available in those days it would have been controlled far sooner. I don't know if you ever have such thoughts - not that regrets do any good. Acceptance is a large part of the secret of living well with lupus.

Bye for now

Clare

 

[Katharine]

Hello there

I am one of those who is hoping that my better care and earlier treatment will mean that I'll have a slighlty easier time of things than my Mum dad/has done. That said my Mum is also an inspiration to me in how life can be enjoyed to the full and one can still get chatted up at seventy!

I hope you enjoy being here. I have to say that this really is the only place I ever discuss being ill. If anyone else asks I just say I have retired and intend living a life of leisure. Ex-colleagues still give me odd looks on that one but it shuts them up as they just don't know what to say.

Katharine

 

[Joandublin]

Hi there United

Welcome to the Forum Its always nice to meet people who have lived with this disease for so long but you certainly have had more than your fair share of complications from it.

I hope you find the forum useful to you and I couldnt agree more - having people to tell your story to who understand is worth its weight in gold

Welcome again and I look forward to getting to know you.

My DAD was a lifelong Man United Fan - avid supporter right up to the day he died at 84 years young My brother managed to get him a visit to the stadium and a Man Utd match ticket about two years ago. It was like a dream come true for him.

Take good care
Joan:rose:

 

[Bullwinkle]

Welcome Mate. We are more than glad to hear your stories, and about any issues you may have. We may walk down similar roads from time to time.
Go United haha.

 

[Mrs M]

Hi United and Welcome to the site.

My goodness you have had your fare share of things to put up with! Hope you're not too bad at the moment.

Speak soon.
Take care

Mrs M