I didn’t have a chance to write much about my pregnancy and I wish that I had. At the time, it seemed like things couldn’t get any busier with my constant array of medical appointments, moving, and getting ready for baby. What I’ve come to realize is that having a baby is even busier than having three to four doctors’ appointments per week and managing a chronic health condition, but that’s a whole other discussion. Pregnancy and autoimmune diseases are an extremely important topic especially because the majority of people who suffer from them are women.
It used to be that many women with autoimmune diseases were told to forgo pregnancy. This is no longer true for many of us, which is a welcome change. (I do realize that getting pregnant can be a difficulty for autoimmune disease patients, but I’m going to stick with my experience with the pregnancy part for now.) With careful pre-pregnancy planning and monitoring during pregnancy, it’s possible for things to go well and to be blessed with a healthy baby. Now of course that doesn’t mean the pregnancies are easy and without risk, but a good outcome is no longer a rarity. In fact, a study from last year, the largest of it’s kind found that pregnancy is safer for lupus patients than originally thought with a 81 percent having what is medically called an “uncomplicated pregnancy”. Click here.
For me, pregnancy was a bit of double-edged sword. In order to make sure my baby was healthy, I had weekly fetal echo cardiograms throughout most of the 2nd and 3rd trimester. These were critical to determine if the baby’s heart was developing correctly and did not develop “fetal heart block”. Heart block can be a consequence of the SSA/SSB antibodies found in some Sjogren’s and Lupus patients. I also saw my high-risk OB quite often in addition to my regular array of autoimmune appointments including rheumatology, rheumatology infusions, and ophthalmology to name a few. To make things a little more tricky, my OB and pediatric cardiologist (she monitored my baby’s heart) were at least an hour away so I would wiped out by the time I got back home.
The good news was that my Sjogren’s was much better while I was pregnant. Yes, I felt the best I had in years. My fatigue was less intense and I had more energy. My neurological Sjogren’s symptoms were more in check and we were able to lessen the “pregnancy safe” medical treatments I needed. Dare I say I felt pretty normal. And while, many pregnancy women complain about brain fog for me it was also the opposite. I felt mentally sharp again. I “knew” this new state was probably temporary, but I secretly hoped it would last well past my baby being born. I imagined going back to work part-time and excelling at both home, career, and motherhood and managing my health. (While material for another post, this was definitely too ambitious).
And I am not alone in having this experience. Some autoimmune diseases are thought to improve during pregnancy. My doctors who are Sjogren’s experts told me there was a chance that I would feel better based on their clinical experience. Some describe pregnancy as a natural imuno-suppressive, which can be a good thing for those of us with over-active immune systems that go around attacking the wrong things.
This raises a number of big questions, which I am not nearly smart enough to answer. What exactly happens during pregnancy that puts some autoimmune diseases into a less or more active state? What role do hormones play in this process? And more importantly is it possible to replicate some of this without pregnancy? I’m hoping that some scientists and doctors might already be tackling these questions. If you're familiar with anyone doing work here please let me know. I do wonder whether some of the mystery around pregnancy and autoimmune conditions may be part of the the key to better treatments in the future.
I would love to hear from other autoimmune moms who were diagnosed prior to getting pregnant. I haven't been able to find very many. What was your experience with autoimmune disease and pregnancy?
Tuesday, March 1, 2016
Monday, June 8, 2015
It took me a day to get settled and feel comfortable. We had gotten the baby into a new routine and now I was ready to relax. I decided to take my very first bath since the little one was born. I had picked out an actual grown up book; I couldn’t wait to read while she napped quietly. (This is a real luxury when you have a baby as I’ve quickly learned). Just as I was beginning to feel like I was on vacation…the fire alarm started going off in our hotel. A false alarm? Not with my luck. A loudspeaker quickly blared that we must evacuate the building. And where was I? I was sitting in the bathtub in a room on the 12th floor. My husband? He was downstairs on the beach.
So I found myself naked and alone with my precious daughter, hearing over a loud speaker that there was a fire. A dream vacation memory in the making if there ever was one. I didn’t have time to think. The adrenalin started pumping and I rushed into action. My baby! A fire! At first I almost ran out of the room without my clothes. I took a deep breath, threw some clothes on and put the baby in the stroller.
As soon as I got out the room, I started screaming in the hallway that I had a baby and needed help evacuating. There was nobody to be found. Everyone must have been at the beach for the day. I headed toward the fire exit and started a twelve floor race down the steps, carrying my daughter in her stroller. (I’m not sure if any of you have lifted a stroller recently, but they aren’t light).
I thought about carrying her down in my arms, but that didn’t seem like the safest option. The stairway steps were concrete and I wanted my baby protected in something in case we encountered a fire. I kept thinking over and over, “I must save my baby,” as I ran down the stairs, carrying probably over 35 pounds of baby and stroller. Any thoughts I had of stopping were erased when I smelled smoke in the stairwell. My heart raced faster and my legs took on a life of their own. I was glad for me pre-pregnancy attempts at a stairmaster.
It seemed like the run down the stairs was never-ending. Those fire safety messages from grade school ran through my head, but I wasn’t sure how they were going to help me in a stairwell. As I was nearing the bottom, a nice woman and her middle school aged son helped me to carry the stroller the frame the rest of the way. When I made it through the fire exit onto the street, all I could feel was utter relief.
Any thoughts if my sprint had been worth it disappeared when I saw two large fire engines and police vehicles camped in front of the hotel building.
I searched the crowd and saw my husband in the distance and screamed for him. He was petrified of course and had sent someone from the hotel to go and help us get down.
And you’ll never guess the cause of this whole hulabaloo, it was a dryer that had caught on fire. It was classified as a minor incident according to the police and fire officials. But it was a fire. For me personally, however, it was major event.
Who would have thought that I would actually have the strength to do something like that? On a good day lifting 10 pounds can exhaust me.
It gave me the confidence to know that as a person with autoimmune disease, I am up for the major challenges of parenthood. While I might have to do things differently and creatively, when it comes down to it, I will jump through hoops to protect my daughter. I also learned adrenalin is some pretty powerful stuff.
Wednesday, January 28, 2015
At four months, we've now crossed the early infant stage and we're getting to the more interactive stage of the daily smiles, coos, and hand sucking that are all so much fun.
Now, for my confessional: I must admit that I had real fears before she came was that I would not be able to take care of her because of my health issues. My worries ranged from big picture fears to specific practical concerns. I literally lost sleep worrying that she would miss out on what she deserved from her mommy. I didn’t want her to feel less love than other babies do because of my own health needs.
At the same time, I was also worried about the day-to-day practical challenge of lifting her and taking her around. Would I be able to carry her if I was tired? Would she just be trapped inside most of the winter because of neuropathies and arthritic pain?
So far, I am pleased to be able to say that I have been pleasantly surprised. Yes, I am tired like any new mom…but I am thrilled to report that we are all ok. I am generally as healthy as I was prior to my pregnancy. My daughter, after an early arrival, has caught up and is growing and advancing well.
That’s not to say this has been easy. My husband and I took steps to make sure we could mitigate the amount of strain I would have. We knew flexibility would have to be our motto... When interviewing pediatricians I realized distance would have to be a factor. One got extra points because she lived a five minute walk from our house. Then, I wouldn’t have to lift the little one in and out of a car for every doctor’s appointment and could conserve some energy.
At times, I would hear other moms to be and moms discuss their exact birth plans or how they would exclusively breastfeed and never give their child formula. My husband and I knew we had to approach everything with a different philosophy…what keeps me and baby healthy is the goal--not ultimate perfection.
Here a few other steps we took to manage a baby with a chronically ill mama that I thought I’d share:
1) Get Help! Let other family members pitch in and even feed your baby especially during nighttime hours so you can rest. I found this extremely helpful for the late evening feeding around 11pm or midnight so I can go to sleep early and get some rest before middle of the night wake-ups. As others know with autoimmune disease, sleep is key and without it symptoms can get worse.
2) As long as she eats, we’re ok! While breastfeeding is considered best according to my doctor, we also decided before our daughter was born she would also have formula sometimes to preserve my strength. (It turns out that because she was underweight the pediatrician insisted that we supplement with formula anyway.) Breastfeeding is exhausting even for healthy moms, but add autoimmune disease into the mix and it can be very depleting. I breastfeed and pump as much as I physically can (about 5 times a day), but having formula as an option makes it easier for me to take a break when I need to.
3) Convenience is key. As I mentioned above, try to make everything as easy as possible for yourself like having a pediatrician nearby. There have been so many more doctors visits than I expected that being able to get there easily has been the most important thing.
4) Limit Carrying. I try to carry less and order online if possible. The need for diapers and baby supplies is constant. When I lift things, I get more tired so I’ve found diapers.com and other baby sites to be a lifesaver. They are also cheaper, especially when I find discount codes that I track down regularly.
5) Freeze, Freeze, Freeze. If someone offers to cook for you, say YES. Having a baby is depleting and I didn’t have the strength to cook at first. Now that I’m basically recovered, there really isn’t much time to make a wholesome meal. I’ve tasked my mom with making food for me and freezing it so I have something that I can heat up quickly and have ready within minutes.
7) Assign Tasks. Being a mom means being a manager. If you’re lucky enough to have family and friends helping you, make sure to have jobs for them. I promise something always needs to get done whether its dishes, laundry, or sterilizing bottles. Otherwise, everyone will just stare at your little bundle of joy. I learned this one the hard way when I found myself doing dishes after company came on four hours of sleep.
8) Take time to be a family unit too. I must admit having our home invaded with family
has driven is driving my husband and I a little crazy. We try and balance all the company by having one day a week when it’s just the three of us.
9) Hand-me-downs help! At first I thought we would need to get everything ourselves since we had no family nearby with young kids. I found out that the more I talked to friends about what I was looking for, people started sending us stuff. Friends, relatives form afar, even friends from a moms group have all generously been happy to share . (I promised to give everything back of course.)
This is just a short list of things which have made having a little one easier as an autoimmune mama that I wanted to share. What have some of you done to make the infant phase a bit more manageable while living with autoimmune disease? I'd definitely love the advice and I'm sure other moms with chronic illness would to.