Parenting with chronic pain

My oldest was about 6 months old when I developed lupus' annoying little brother fibromyalgia. I have no advice for you except to research, research, research beyond what your rheumatologist tells you. I have a good friend with lupus and she basically ignores her doctors--not that I'm counseling that, but she knows her body better than they do and the treatment protocols that work for her are not necessarily what the doctors would recommend. With chronic illnesses, WE have to become the experts in our own treatment because the doctors do not know everything, nor do they know our individual bodies. I can guarantee you I know more about fibromyalgia than the rheumatologist who confirmed my diagnosis. My best to you.

Lynn Siprelle, Editor

There are a number of assistive devices, including parenting assistive devices, online--try a web search. If you can't find them, let me know and I'll try it. A good resource, for arthritis and arthralgia and fibromyalgia as well as lupus, is http://www.arthritis.org. Also adapt what you buy and do to your own abilities: baby frontpacks or slings might be more comfortable than holding her. Contact La Leche League for advice on breastfeeding positions. Get a bassinet if you don't have one, because they are easier to pick her up out of than cribs--lower sides. Likewise, why put her on the floor at all when she is only two months old? She'll need to go on the floor when she is crawling and exploring, but right now, put her on a waist-level surface such as your bed, as long as she is closely watched and supervised. I never put things on the floor if I expect to have to pick them up any time soon. By the time she is old enough to crawl, you will have seen the rheumatologist.

The good news: 1. the worst lupus flares, from what I've heard, tend to be immediately after having a baby, so it is as likely as not that you will begin to feel better after there has been more time after the birth

2. rheumatologists in general know more about lupus than about fibromyalgia, so you will be able to get relief even if it is from (yuck) prednisone (which, according to most doctors, is safe during breastfeeding but your mileage may vary)

There are people with lupus who have to go on disability and can't work at all, but they are in the minority.

I hope your doctor remembered to tell you to stay out of the sun, which makes all lupus symptoms worse.

Lots of sympathy from here. What I did for breastfeeding anyway (before pain) was to lie down on the bed... comfortable for you and baby, and you won't have to be in pain from holding her. Definitely worth a try - I'm sure you can find out specifics from LLL. If holding her is causing pain, you're going to have to find ways to interact with her without actually bearing her weight, or she's going to see your pain and respond to that, connecting the pain on your face with the fact that your holding her. I guess that means playing with her while she's in her crib, or on your bed, or on a quilt on the floor or something.

Don't beat yourself up about what you can and can't manage though. This is not your fault and you just have to do your best to work round it. On bad days you'll learn to be more accepting about your limitations - that's what I've learned especially in the last few months. Your daughter will grow up knowing your limitations too most likely, so at least her adjustments to your condition should be easier in some ways. The feeling that you can't enjoy your first child as much as you dreamed of... there's nothing that can be done about that. You can enjoy her, just not always in ways that you expected - you have to adapt to that mentally, because I'm sure that what you're going through now isn't what you pictured before your daughter's birth.

I would third what Becky and Lynn say about finding out as much as you can. You cannot rely on one or two doctors for all your information - cross-check everything you hear and then some! If you don't feel right, trust your own intuition about your body. And fingers crossed Becky's right about the worst flares being after childbirth. She's right to bring up the possibility of it affecting your work though. You might just have to be mentally prepared for the idea of not being able to work in exactly the same way as you did before you had your daughter. Adjustments *might* have to be made, and it's better not to shut yourself from that possibility - keeping it in the back of your mind, and your DH's mind, will help if adjustments do need to be made.

Good luck with finding out how to cope... and with finding ways to *really* enjoy your daughter's babyhood!

Kerri.

I would also hire a post-partum doula, or at least a local teenager, to help with the more physical baby care tasks part-time. Help such as this can be had for pretty cheap.

Thank you all for the suggestions and most importantly for the support. Being a new mother is hard enough, but this has made it even more challenging. Since my nearest family member is 2000 miles away, I was feeling rather isolated, but knowing that I can come here and get great advice and a friendly shoulder makes me feel so much better.

Thank you,
Angel

I know that feeling... my family's even further away, and when my first was born I felt even more isolated by the fact that my in-laws had radically different feelings about child-rearing. I found this wonderful place a while after my second child was born, nearly 5yrs ago and it has made more difference than I can say. I certainly don't feel obliged any more to rush out and spend time making friends with people with whom I have nothing in common, just so I can have a circle of 'friends'.

the feelings of isolation that come with the first child and being away from your own family are not easy. If you have anyone at all questioning your way of doing things, on top of whatever questions and doubts you have... Well that's exactly why you need a non-judgmental group of women who, one way or another, will all have been wherever you are at some point in their lives. Everyone has a story to share, even if they can't offer an easy solution, and sometimes all it takes is knowing that we've all been there and you're not different or crazy or a bad mother or whatever else it is you're feeling. And that's just ordinary first-time motherhood, even without the pain and spectre of lupus that you're dealing with!

So please, whenever you need the company, drop in and say hello. You'll feel better for it, I'd pretty much guarantee! There's a fair few shoulders to cry on too if that's what you need!

Kerri.