You know, as I started to read your thread I did look very carefully to check that it wasn't in fact written by my husband! It could well have been written by him 7 years ago, when I was first diagnosed.
What have we learned in this time? I think you ask very sensible questions, and of course I don't have all the answers. I would say that the last years have been characterised by ups and downs, but that in general plaquenil has been hugely effective in keeping the lupus under control. We have had two children with uncomplicated pregnancies and pleasant births, I breastfed both of them for 9 months (while on plaquenil, my doctors at least said this was no problem). It can be exhausting at times with the children, and while I was well in pregnancy I had a flare after each birth, but no serious organ involvement.
We're still learning to be flexible in our lives, to adapt to new symptoms as they come (for instance I am now photosensitive) and to try and pace my life so that I don't do too much and get ill. Stress is the big killer for me, along with too much physical exertion and now intense UV light. My husband's support is of absolute paramount importance, so I am so glad that you are so supportive of your girlfriend. It is so important not to say 'I told you so' even if you think it: sometimes I know I am doing too much/staying up too late at a party etc and I know I will pay for it later, but that is a decision I have made and sometimes it's just worth it! But it is lovely that my husband never says 'you shouldn't have done bla bla'
I could write so much more (not that we've cracked it or anything) but my delightful children are now bashing each other with a helicopter so I have to go. You are most welcome to PM me if you would like more!
x Hatty
What have we learned in this time? I think you ask very sensible questions, and of course I don't have all the answers. I would say that the last years have been characterised by ups and downs, but that in general plaquenil has been hugely effective in keeping the lupus under control. We have had two children with uncomplicated pregnancies and pleasant births, I breastfed both of them for 9 months (while on plaquenil, my doctors at least said this was no problem). It can be exhausting at times with the children, and while I was well in pregnancy I had a flare after each birth, but no serious organ involvement.
We're still learning to be flexible in our lives, to adapt to new symptoms as they come (for instance I am now photosensitive) and to try and pace my life so that I don't do too much and get ill. Stress is the big killer for me, along with too much physical exertion and now intense UV light. My husband's support is of absolute paramount importance, so I am so glad that you are so supportive of your girlfriend. It is so important not to say 'I told you so' even if you think it: sometimes I know I am doing too much/staying up too late at a party etc and I know I will pay for it later, but that is a decision I have made and sometimes it's just worth it! But it is lovely that my husband never says 'you shouldn't have done bla bla'
I could write so much more (not that we've cracked it or anything) but my delightful children are now bashing each other with a helicopter so I have to go. You are most welcome to PM me if you would like more!
x Hatty
