Parenting with a Chronic Illness…My Lupus Story

Today, I want to address something that is very personal to me. This is something that so many parents struggle with. How do you live with a chronic illness, and still be a good parent? Its not always an easy thing. Trust me. This is my story.

Diagnosis

I was 21 years old when I became very ill. My symptoms were all across the board. I was dealing with everything from chronic sudden migraines, to joint pain so severe I was unable to walk, to blood pressure dropping so low that I was losing consciousness. After months that felt like years I received a diagnosis of Lupus.

For those who may not know, Lupus is an auto-immune disease. I wont go into all the technical explanations and jargon, but basically what Lupus does to your body is make you immune system go haywire. The body naturally produces antibodies to fight germs and viruses and bad stuff, right? We all learned that in science class at some point. Well, when you have Lupus, the body produces too many antibodies when there is nothing for them to fight. Somewhere wires get crossed and the body attacks itself.

Lupus can sometimes be controlled with medication, but it is not curable at this time. Even with meds, symptoms can come and go pretty much at any time. A “flare” is when symptoms occur. “Remission” is when things are under control.

I was very lucky with the fact that my PCP (primary care provider) picked up on all the crazy symptoms and chose to run the correct blood work. He referred me to a Rheumatologist who is AMAZING, and pretty much saved my life. She started me on a drug, which carries minimal side effects and it has worked wonders. I was very sick when I first was referred to her almost 12 years ago, and since then I have been able to have periods of leading a very normal life.

That being said, I still have flares. I still have days where the pain and the fatigue (especially the fatigue) beat me down. Sometimes this lasts for weeks. I still managed to make it through pulling college all-nighters, and working insane hours at retail stores and restaurants. Then I found out I was going to be a mom.

Pregnancy and Lupus

When I found out I was pregnant, I went through all the usual emotions that any woman would. Surprise, shock, happiness, uncertainty, worry…etc. However, there was an added layer of straight, almost paralyzing fear. Could I be pregnant? Could my body carry a healthy baby to term? What would this mean for the Lupus? Would I be able to stay on my medication?

The Beginning

I went to my OBGYN to confirm the pregnancy. It was my first time seeing this doctor and I explained my medical history. I was referred to MFM (maternal fetal medicine) who specialize in high-risk pregnancies. Yes, this would be a high-risk pregnancy.

MFM

My husband and I met with the doctor at the MFM office, and sat down to discuss things like risk factors. I’m going to do my best to recall what was said, but my head was spinning with anxiety. When a mother has Lupus, there are certain antibodies she can carry that can harm the fetus. Luckily, I did not have those. (Insert huge sigh of relief) There are still risk factors though. I was at increased risk for things like fetal growth issues, pre-term labor, and pre-eclampsia.

What all of this meant was basically that I was in for months of doctor visits and close monitoring. In the beginning, it was pretty standard. I’d see my OB every 4 weeks. At around 18-19 weeks, I had the anatomy scan. We found out we were expecting a boy. I believe it was around 24 weeks or so, I started having what is called a “growth scan” to make sure the baby was growing properly. These appointments were done in the MFM office once per month and continued until delivery.

The End

When I reached the 3rd trimester, a little later in the pregnancy, I had to go to my OBGYN office weekly for and NST (non-stress test). These monitor if you’re having contractions, baby’s movements, and baby’s heartrate.

Another thing I had to do was monitor my blood pressure at home. This started pretty early on in the pregnancy and continued until I delivered. I had to be on the look out for any raise in my normal blood pressure because it could be a sign of pre-eclampsia. I checked it 3 times daily.

One more concern was allowing the pregnancy to go on for too long. Due to the high-risk nature, my OBGYN did not want me to go past 39 weeks.

Parenting and Lupus

Mothers with Lupus are at a high risk of having a flare after giving birth. Given the stress of having a newborn and the lack of sleep, it seems to make sense to me. I was monitored very closely for the first year after my son was born.

Let me tell you, it is exhausting. Having a new baby is draining on even the healthiest of parents. When you have a chronic illness, you will often times start your day tired and it goes downhill from there. With auto-immune diseases, stress can often make them worse. So now, not only are you incredibly fatigued, but you have this little person screaming round the clock and its up to you to figure out why. If that’s not a recipe for stress, I don’t know what is.

Here are some things that have gotten me through the best and worst of times.

Have a Support System

This is important. You need to have people around that you can rely on. Yes, PEOPLE, as in more than one. I was fortunate to have my husband and my parents around a lot in the beginning. My dad is retired so he helps a ton during the day. My mom works, but she was a huge help too.

Sleep When Baby Sleeps

Everyone tells you this when you’re a new mom. It sounds ridiculous, because there is just so much to get done, and the only time you can do it is when baby is sleeping. Well, I personally said, “SCREW THAT!” at least for the first few weeks. My house was a wreck. And yes, there were things that needed to get done, but honestly, I think this one thing was what saved me in the beginning. Trust me when I say the housework will still be there later.

My son is now 3, and there are still times when he naps that I will nap. You will be of no use to anyone, you child or otherwise, if you are completely run down from lack of sleep.

Ask for Help

Mom guilt can be a huge roadblock with this one. I remember feeling that I was the mom and had to do everything myself and should be able to handle everything myself. It doesn’t work that way. Ever. Especially when you are dealing with a chronic illness. Don’t feel guilty for needing help. We all need to rest, to take a break, to take a shower that lasts longer than 3 minutes, to do whatever else. If you are blessed with a support system, use it!

Don’t Be Suzy Homemaker

Nobody is the perfect wife and mother and housekeeper and chef and whatever else all the time. If someone tells you they are, they are full of it. They are bullshitting you and you don’t need that kind of negativity in your life. Sorry for the language, but its true. Especially at first, you wont have a clue how to juggle it all, and that’s ok.

It gets easier. You will get a rhythm down and figure it out. Right now, I have a sink full of dishes and a pile of laundry I am ignoring in hopes that a magical laundry fairy will woosh in and make it all disappear. There will be times where you spend a large chunk of your day cooking or cleaning or running errands. That’s fine. There may be times where you sit on your butt and play with your little one all day and nothing gets accomplished. That’s ok too.

Remember that you are in competition with nobody. Do the best you can and you’ll be doing just fine.

The Bottom Line

There will be times you will feel like Super Mom, and there will be days where you feel like the dog poop on the bottom of someone’s shoe. Learn to roll with it. Listen to your body and what it needs. Ask for help. If you’re having a terrible day and don’t have anyone who you think would understand, reach out to me. I guarantee I’ve been there more times than I can count. I’m always willing to listen because I wouldn’t have made it through without people there to help me.

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About Lisa Wingerter

I'm a 32 year old, married, stay-at-home-mom from the Metro Detroit area

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10 Comments on “Parenting with a Chronic Illness…My Lupus Story”

  1. You are truly and inspiration and this is so eye opening. Everyone’s journey to and throughout motherhood is so different. But you have a whole different kind of strength in you.

  2. Hugs momma! I have endometriosis and PCOS and there are times that I just can’t move. Very stressful physically and emotionally. Until you actually have an auto-immune disease you just can’t fully understand.

  3. I really had no idea how lupus can affect pregnancy. This is such an eye opening article. Thanks for sharing. I’m glad that you and baby boy are doing well and that you have people that will support you when you’re not doing well. The “tips” at the bottom, I so agree with. Thanks for sharing! I think moms definitely have mom guilt and this helps them to remember that it’s ok to ask for help. Way to go mama!!

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