Hi all, I'm new to this site. I have had SLE for about 13 years have had some times were i have been very unwell and others were i have been fine. I have always found it quite hard talking about my condition to people to the point were i have not told people as i did not want to come across as a victim and go through the whole awkward look from people (the but you look so well look) I have very recently (only yesterday) plucked up the courage to tell one of my husbands cousins though i did not go in to much detail it did feel quite liberating! anyway i just felt like sharing that with you guys as i wondered if anyone else felt like this?
My next question is quite seprate it about the whole dilemma on do you have a baby or do you not? i have been fighting with this for a while but recently in the last two years (i'm lucky in that my husband does not mind either way).
I am worried about becoming ill especially when i have been flare free for a while and am scared of going through the whole illness again it like why mess up things when you are quite well at the moment... and the whole talking myself out of having a baby begins...
My consultant has spelt out the risks to me and has actually been very supportive about the whole thing but im so worried about loosing my health (it also does not help seeing my brother trying to cope with dialysis 3 times a week amongst other issues) already having kidney diease this does scare me.
And the other thing i wanted to ask if to those Lupus individuals that have had babies how did you cope with the childhood illnesses such as the chicken pox or meningitis? due to our comprimised immune systems (i have read that you can get pox again especially if you have low immunity)
Hope i did not reamble on, would appriciate some real life experiences. Thanks in advance
Vegabond
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vegabond
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This is a difficult call for sure <3 My SLE was triggered by pregnancy so I didn't have to ponder it before having a child. It was very tough indeed raising him while simultaneously battling SLE. Things did become slightly easier, though, after he started school at age 4. Prior to that I was continually in and out of hospital for bed rest, utterly exhausted, but had the benefit of private meds then. The husband, initially supportive, quickly became exasperated and resentful of the problems and added responsibility parenthood coupled with me my illness were causing him and our relationship perniciously deteriorated as a consequence. Knowing this caused me overwhelming guilt, anguish and stress. My SLE wasn't diagnosed until our boy was 9 y.o. but didn't make much difference to the harm already caused to my marriage. The next turn of events sounds confusing but bear with me. Shortly after diagnosis the husband insisted we have a second child so I went through much the same process as you - consulting doctors and weighing risks - and decided it was probably an unwise choice *for me*. However, unlike you, I already had a child at that point and can easily understand the overwhelming desire to have one at least. Lupus is a lottery - you can never be sure how things will affect you but at least know you have it and you and your husband can approach a decision with open eyes. You might be fine through the pregnancy and birth or either could trigger flares of any severity or length or none at all. There will always be an unquantifiable risk. Partenthood is stressful, even with the best behaved babies and when one is quite well. Hopefully you have chosen a life partner more wisely than I - my marriage ended in divorce about a year after I was diagnosed. If (unlike me) you and your husband have close family nearby who love and will support you both and can also help out with the baby if you fall ill, I would say go for it. If not, give a lot of thought to how you'll manage. I hope that helps and good luck!
Thankup so much for sharing yur experience with me, sorry to hear hubby was not very supportive thats tough going especially when you need someone to relay on!
Your spot with the dilemma do i just bite the bullet and have one?...
Can i ask how you coped with him having childhood illnesses like chicken pox or other infections?
I cannot possible answer your question about having children, and to be honest without a crystal ball nobody can tell you how it will pan out either way.
I can confirm a couple of things though. Yes you can get chicken pox german meascles and a few other delightful childhood illnesses again.
And the thing I resent most about having lupus is the days it stole from me with my own children, either because I was not well enough or because I have forgotten them.
You're very welcome Vegabond and thank you for the compliments Shame about the marriage but if it hadn't been the SLE, would probably have been something else further down the line.
As to childhood illnesses, well, they're vaccinated against almost everything these days and the only thing you have to be careful with is extra-vigilant hygiene when changing nappies for a few days after they have the polio sugarlumps (as it was when my son was little - not sure how they have it now) - there is otherwise a risk of of catching it from their faeces whether or not you were immunised as a child. That pretty much only leaves Chickenpox, which I'd already had as a child. I was absolutely fine when my son caught it. However, viruses and tummy bugs picked up at school and brought home can be troublesome and a worry if you're on cortico-steroids or chemo with accompanying compromised immunity. If you can manage on NSAIDs and/or antimalarials through your kid's school years then I wouldn't fret.
I was diagnosed with lupus in 1988 and decided to go ahead and my Husband & I decided to start a family. My advice would be to ensure that your relationship is very very stable, as I developed a Primary CNS Lymphoma tumour mass on my brain, which I personally believe may have been brought on by many years use of Azathioprine. My husband found coping with my illnesses very difficult, and when I was recovering from my tumour removal, I found out he had found another woman, and I am now a single parent, struggling to cope with Lupus/Rheumatoid Arthritis/cancer recovery and a 9 year old daughter. My daughter was born 6 weeks early by emergency c section, and I had to inject myself daily throughout the pregnancy and for 3 months afterwards due to testing positive for the antiphospholipid syndrome 'sticky blood'.
As a single mother I am struggling at the moment to keep the house running alone.
Having a child should be considered very carefully - however, i wouldn't be without my gorgeous daughter. It really depends on the extent of your lupus problems.
Thank you for sharing sassy and thank you for the advice. I beleive you are right about the azothioprine as i believe i got pre-cancerous cells in a routine smear test beacuse or it and when they found out they started to reduce my azothioprine with a view to stopping it!
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thats tough going especially when you need someone to relay on! 
Shame about the marriage but if it hadn't been the SLE, would probably have been something else further down the line. 
Thank you
Hello and thank you for having me!
LUPUS UK Community Survey - Question Three - Were you told it was "in your head"?
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Just out of Curiosity, what age did you feel you started with Lupus signs and symptoms? Age of diagnosis?
