My first lupus blog

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

10 Replies

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  • lupus isnt so bad just remember we are all sufferers and we are here to help you through it. Im on steroids n they help me loads so dont worry.

    (by the way ive had it for 13 yrs now) so ur not on ur own we will assist n help anyway we can

  • any questions please ASK

  • Hi

    I've only had Lupus for 6 years and like you I looked it up on the internet and was horrified, I didn't get anxiety though, I just blanked it, kept popping the pills and went into denial. Denial lasted about 5 years!! Can relate to the cheeks..... am on a high dose of steroids myself at the moment and try not to look in the mirror as I see a chipmunk staring back lol !!!

    Have you tried antidepressants and/or counselling? If not get to your docs and tell them you need help with the anxiety, you really shouldn't have to suffer. Hope you find some inspiration and support on this site. Take Care, Angela xx

  • *Big hugs* It's scary. It is. I only recently got diagnosed - and I did the same thing - looked all over the net and scared myself silly. You can be ok. XXXX

  • hi poodlgal

    i too had pre eclampsia with my first child and he was born 4 weeks early and had to go into intensive care it was all very scary,so when i was diagnosed with lupus i was sure thats when my problems started.

    i know looking on the internet a lot just makes you obsessed and my husband too said he was going to throw out the laptop as i was always on it and getting very upset and scared.

    i now only ever go on this web site and steer clear of any other and i did have counselling for 6 weeks which helped me soooooo much and i would recommend it to anyone who has trouble coming to terms with having a chronic disease.

    stay positive i know its hard sometimes

    take care

    debbie xx

  • ps good luck with test results and let us know.

  • thanks so much everyone, so nice to talk to people who are going through the same, yes ive been on anti-depressants for 12 years to try and control my nerves, my gp is useless they just up the dose! i try to avoid seeing them as ive lost all faith in them for not noticing the problem with my blood,also they walk on eggshells around me now. thanks again and i will keep u all updated xx

  • I was only diagnosed last June, and yes I think I went into denial, as well. I also read what ever I could which scared me as well, I am accepting that I do have to live with Lupus, I have spen 10 months trying to fight it, but after being signed off for 3 weeks with another week off at least due to exhaution, from the lupus it self, stress at home / work/ mother in law moving, I now know I cant fight it just have to learn to live with it. Good luck with test results, keep us informed

  • know how you feel lupydragon,hope you start to feel better soon,thank you x

  • To poodlegal:

    Welcome to LupusUKBlog!

    Keep the hope alive. A shared upset it halved. This is a non judgmental place to jettison the baggage life and life with lupus (or other autoimmune disorder) brings.

    The love/hate rollercoaster relationship with steriods (prednisone and its friends) ... when usage is a must it is a mixed blessing indeed.

    WE ARE SURVIVORS ... not voiceless - not victims - not helpless but hopeful.

    Wishing you the best of luck. Please keep us informed. Be well. On on on ...

    Cheers.

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