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Discussion Starter · #1 ·
HI! Everyone
I am Avis I am new to website not new to SLE. I have had SLE for 38 1/2 years. It had peracarditis when it was diagonosed. It affected my heart, joint pains and extreme exhaustion. Later on it affected my eyesight I could not see to read,my husband redorded books on tape recorder for me. When I first got it I was very bad unable to do anything for myself, lost the use of my legs for sometime. I slept day and night. For years I went to doctors one doctor told us I was lazy nothing wrong 6 months I was diagonosed. My heart was affected which made me extra tired. My sight came back not the best then I lost my hearing I use a hearing aid. Years later my tricuspud valve was damaged. I have osteoporous and osteoarthritis. we went thrupugh some realy hard times. Having a possitive attitude did help it I tried to hide my pain from my husband. I gave birth to a healty son who is now 30.
I improved when he was born apparently you body makes it own cortizone and I was still on predisone, all was well for a few years with a number of bad flare ups in between. I have had 2 strokes, no side effects, the nerves of my legs have been damaged by the lupus but I am fine, I needed to have a back of twenty years of the first 3 disks in my spine which I turned down now they want to opperate on the three disk by T12 no ways. I fell and broke one of the disks in my spine stubborn me I went to work and physio everyday only picked up when I went for xrays a year later. My Lupus is the reason why I have decided to go on early retiremen at 59. My heart goes out to all you. Always try to be possitive I know it is not easy from expierience
Love
Avis
 

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Hello Avis, Welcome to the site. I am so glad you were able to have a healthy Son. Does he live nearby?
You have had a bad time, and obviously met some bad Docs along the way. Sadly, that is all too common.
Are you in the UK or abroad?
x Lola
 

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Discussion Starter · #3 ·
Hello Lola
My son lives close by but he is a pilot and is out of the country most of the time he has two beautiful childrin Mitchel 8 Kaitlynn 5.I live in South Africa. When I first got Lupus
Doctors in South Africa didn't know much about it. I have now found a great Doctor who works together my nerologist.
Love
Avis
 

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Hi Avis

Welcome to the Forum :) Its lovely to meet you and I hope you enjoy your retirement years. It certainly looks like you earned them.

Im glad to hear you now have some great doctors but it sounds like you had a heck of a journey with your Lupus :hug:

I look forward to hearing more from you. Its always nice to meet someone who has lived so long with this disease.:)

Take good care and hope to hear from you soon
Joan:rose:
 
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