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
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!
Hey Tigerlilly (love the name+cat pic)
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?
Thank you
Vegabound