# Living with lupus



## Helena669 (Feb 12, 2006)

Hello,
I havent posted for ages and ages, I was a clomid girl before. a year ago I had my beautiful baby girl, who was actually concieved naturally. 

I have lupus and crohns disease, which made getting pregnant difficult and I was very ill during my pregnancy. Lupus is an autoimmune disease which causes the body to attack itself and since Millie was born, I have been very ill with fatigue, arthritis, inflammation, spontaneous allergic reactions and skin problems. I also had blood clots in the placenta and Millie was premature and tiny, so I will need steroids, aspirin and heparin to maintain another pregnancy.

I am already 31 so we are thinking about having another baby. I will want to try to concieve naturally as lupus is triggered by hormones, so any interventions could make me really unstable. I am worried about my health during pregnancy, what if something happens, and also my postnatal health, as I have lost so many precious days with my baby through illness. But then I look at her and I really want her to have siblings.

My husband has polycystic kidneys, which my daughter has a 50;50 chance of inheriting, and I am going to ask my GP for a test. So there is a lot that I am worried about, but I cant accept the thought of not having another child! I have thought about surrogacy, but I already have a child....

I am sorry for the long rant, I was just wondering if anyone had a similar experience or if there was anyone I could talk to.

Much love xxx


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## KW33 (Apr 10, 2006)

Hi Helena

I haven't been in your situation but wanted to give you a  .  You have had a lot to cope with and it must be very difficult to sort out what you want to do.  The only advice I can give really is to do what you feel is right for you and your situation.  Maybe it would help to discuss it with your doctor first?

Karin

xxx


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## Helena669 (Feb 12, 2006)

Thank you for your support, Emma is gorgeous!! 

I will ask for an appointment with the dr at St Thomas' where I had all my care. With Millie, I was so well looked after when I was pg, but when I had the symptom flare after she was born I was all on my own. But I know that they will tell me that they cannot predict what will happen.

Im also going to see a psychic, my friend recommended a lady that she went to, who was far too specific to be a fake, so Im hoping to get some guidance. But I want to decide fairly soon, I hated the feeling of being in limbo when I was trying to get pregnant with Millie, and then every day I was pg, praying that we would make it. But then I look at her, and I cant imagine things being any other way!


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## *Bev* (Dec 20, 2005)

Hi Helena, another   from me hun.  You've been through so much but I completely understand the yearning to have another baby and for you DD to have a sibling.

Although completely different I had issues during pregnancy and afterward and share your concerns about missing out on our first borns.  I personally have decided its worth the risk for me but as I said my 'issues' weren't as serious as yours, that said we have decided to wait until Alex is 3 before starting to try again (i'm 2 because that way I won't feel as though i'm missing out on his 'baby' years - I know its still missing out but... for me they change so much in these first few years.

I'm not sure this helps but thought i'd put down my thoughts for you to ponder.

Bev xx


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## Helena669 (Feb 12, 2006)

I do actually think it will be better to wait until millie is a bit older, especially as so much of the last year I feel has been lost due to me being ill. Also I will need heaps of rest if I am pg and afterwards, and if she is still a baby then its not fair on her. 

Thank you so much for your support, Its millie's first birthday tomorrow, so although I am so proud of her growing up and all her little independent ways, I  just cant come to terms with never having another baby.

Much love


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## Betty M (Dec 6, 2005)

Hi Helena

I am another lupus mum although I have not been through the mill like you did. My lupus is not hormonally triggered and I found that IVF did not make me flare.  I was also lucky in that my lupus improved during pregnancy although I did flare afterwards.  I have found that I now am having much more pronounced reactions to things  - a small insect bite ends up with me with a swollen leg - that kind of thing and lots of skin issues too. Oh and the dreaded hairloss, joint pain etc but generally I am pretty well.

You say you were at St Thomas's for the pregnancy - was that in the Louise Coote Unit?  Do you go to the regular lupus clinic there? I think that is the best way to cope with the post-natal flares. I am at UCH and during the pregnancy I want to the specialist obstetrician physician/rheumatology clinic. That meant I had one specialist OB consultant, a regular OB consultant plus one of the consultants from the lupus clinic all in one room at each appointment.  They followed me postnatally for about 10 weeks too then I was back to the regular lupus clinic.  I found that really helpful.

My two are almost exactly 3 years apart.  I would probably have preferred a smaller gap but it has meant that I am probably less tired than i would have been with a smaller gap.  You are way younger than me so have more time on your side and so I would say wait a little while.  It is best not to try and conceive during a flare so it may be that your consultants wouldnt advise trying until things have settled.

Happy Birthday to Millie - the 8th was my DD's de date (and our wedding anniversary!) - hope you all had a lovely da.

LoveBetty


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