I had the pleasure of sitting on a panel with a few lupus professionals at this past weekend's symposium, one of whom was a rheumatologist. And I'll tell you - that's one way to get your questions answered...sit next to a doctor, on a stage, with a microphone in your hand. There was no way he was ignoring my questions! However, since I officially wasn't supposed to be the one asking the questions, rather, answering them, I only slipped in one or two...when it seemed fashionable to do so. But, oh, was my head swirling with queries!!
One of the questions posed by the group was about pregnancy, and the doc and I both fielded the question - agreeing that PREPAREDNESS was really the most important thing when it comes to a lupus pregnancy. Here's my interpretation of our collective responses:
1) Do your best to ensure that your disease is inactive: If you know anything about my story, you know that I had zippy luck trying to get pregnant and stay pregnant when my disease was active. There's a reason you need to be stable, strong, and healthy - that little life inside of you needs all the help it can get. My advice - be as healthy as possible for as long as possible...and then give it a go. I have one success story under my belt, and another one on the way. I couldn't agree with the doc more on this one!
2) Treat your pregnancy with great care: In my opinion, the best way to go into a lupus pregnancy is to treat it like a lupus pregnancy from day 1 - know the risks, make sure you and your doctor are clear on what needs to be monitored, when, and how often, and take the necessary precautions (medications, etc.) to make sure the pregnancy can be as successful as possible. My lupus support group ladies tell me that the best thing about my pregnancies is that I knew that I had lupus BEFORE I got pregnant...so that my doctors and I were prepared going into it. I've been treated as high-risk pregnancies for both babies thus far...and I wouldn't have it any other way. The perinatologists are my primary OB's - and I have the absolute best care you can imagine. Starting next week, I begin my 2-week sonograms, which will take place every other week until the end of my pregnancy. It's a lot of doctor's visits, I know - but who wouldn't want an extra few glances at their baby in utero? And because these guys see lupus patients frequently, I know they're on the lookout for things to, well, look out for during lupus pregnancies. This is a time when I'm so happy no one is throwing caution to the wind!
3) Be prepared for disease changes during and/or after the pregnancy: Again - if you know going into the pregnancy that your disease could become active, or that after giving birth, the drop in hormones, lack of sleep, added stress, and the sheer fact that you just went through something as traumatic and dramatic as giving birth could cause you to flare allows you to plan ahead. As much as I hate it, I really dial back my activity during pregnancy. I sleep more when I need it, I don't hesitate to ask for help, and I manage my outings and social events (including book signings) so that I don't tire myself out. I'm not saying I'm 100% successful with my attempts to slow down, but I sure do try. And just as I did when Deirdre was born - I'm planning on finding help everyday for at least 4 hours a day. Yes, it's expensive, and yes, it was a little weird having someone else care for Deirdre for half the day while I was home sleeping - but did I get sick? No. And that was my goal.
And I'll tell you - I didn't wait until she was born to gauge whether or not I'd need help. I didn't wait until I started to flare before I got help. I did my best to preempt a flare by scheduling the help in advance. And that's the name of the game. So if you're pregnant, get a plan of attack in line NOW...before you need it. Do your best to line up a friend or family member to come help, enlist that little neighbor girl down the street to come over for a few hours a week to help out, or think of at least three other ways you can ease your burden once the baby comes (groceries delivered, house cleaning, garden-tending.) It might take a little effort to call around now - but being prepared for lupus is like being 10 steps ahead. Ideally, that nasty little disease will never be able to catch up!
So in honor of lupus pregnancy preparedness week (or so declared by this DL blogger), I'm taking steps to do my part...by growing my hair long. I lost a ton of hair (like, a ton) after Deirdre was born, and I ended up having to get a new 'do in order to compensate for the hair loss. (My doc thinks it was just pregnancy, but my hairdresser says no way - the hair STILL hasn't grown back, although it's on its way. I'm sure it was a combination of lupus AND pregnancy...so I'm taking precautions now instead of being caught unprepared down the road!) During my first pregnancy, I was wearing my hair in a short bob...but this time, I'm growing it out. I've learned from hair loss episodes past that long hair gives you options. Even if I have to cut it off again - I'll at least be able to put it up for awhile to hide the thinning spots. And Deirdre seems to like when Mommy wears pigtails...she thinks it's cute!
What are YOU doing to prepare for your baby on the way? Share your ideas - I'd love to hear them!