hello everyone,i was unsure to join a site like this as ive spent alot of time on the net serching about lupus,reading horror stories,all the things that could happen to me,i got that upset my mum said she would break the computer if i didnt stop!! Lupus UK suggested this site to me,ive had a look and you all seem a nice bunch of people,however ive promised myself and family if i become obsessed and worrying over what people write about i will delete my account,so il start at the beggining.......
At the age of 14 id problems with my hormones thats when i belive the lupus started,however i will never know for sure, at 18 i got pregnant and had a very easy pregnancy until 31 weeks,the day my life changed forever,good and bad,good because i had a beautiful healthy daughter(3lb) and bad because id developed pre eclampsia and was critical for 48 hours, as a teenager i bounced back but months after i began with really bad health anxiety, i was told at the time it was because of the awful time id been through etc and it would pass,12 long years later it hasnt passed and it rules my life,not just health anxiety but all anxiety day till night.
I felt so ill,so tired all the time,thank god me and my daughter moved back in with my mother when my relationship broke down, once when my daughter was about 8 we were doing funny impressions and had to guess which family member we were doing,she laid down on the rug in the living room and began snoring,everyone shouted out its your mum,i sat there with tears rolling down my face,not only did she have her mum who had constant panic attacks but one who slept alot too.
I was always telling my gp i was ill,they was always telling me its your mind,although every bloodtest showed i had a very low white blood cell count,i asked why they told me just one of those things until last year i seen a new doctor as mine wasnt available,she sent me to a specialist and after months of tests and me just happening to mention that my knees were really sore and couldnt walk up stairs for a few weeks they kept mentioning lupus,a urine test showed high protein levels i was rushed in for a kidney biopsy,within 4 hours of having it done(missing kate and wills wedding!!) i was told i had stage 4 lupus kidney involement and that lupus was affecting my bone marrow,i was put on a cocktail of drugs,side affects awful,i lost who i was all i could see in the mirror was cheeks!!!!!!!!!! anyway was doing really well,it took me a long time to accept i had lupus,i couldnt bear to hear the word,then lady gaga said she had it so she got turned off everytime she came on the radio,princess kate then called her puppy lupo!!!!!!!!!!! but these past few months i thought i was dealing with it my kidneys were back to normal,reducing steriods from 40mg to 6 mg then went to hospital last week to find out protein levels had risen quite alot 
was very dissappointed,had another test today get results next week then find out what the docs will suggest,im dreading high steriods again but what can we do but just get on with it.......watch this space
well thank u for taking the time to read this,its rather long,ive never spoken to anyone else with lupus apart from watching other people at the clinic reading lupus leaflets thinking poor sods!! x
My Lupus and me
Can anyone please help me. My 22yr old daughter and I are trying to get a diagnosis. Looking back her first flare up (isolated was age 3).
TOTALY CONFUSED..... CAN SOMEONE GIVE ME INFO ON SEIZURES WITH SLE PLEASE.
First lupus related appointment tomorrow - top tips please!
CNS Lupus
