Preparing for Pregnancy with Sjogren's: My Story (1/3)Dec 03, 2021
Although both my husband and I are both from families of 4, over the years we have always talked about the possibility of a bigger family. Three kids seemed more manageable. That said, I have an odd fascination with even numbers...so I liked the idea of 4.
All that considered, as a 2 physician couple, we had waited until the end of our training to start our family… we were well into our 30s when we decided the time was right. We felt incredibly fortunate to be able to get pregnant pretty easily as many of our friends were struggling with infertility.
As we embraced the changes inherent to parenthood. We found that we *mostly* enjoyed the ups and downs we experienced as parents to our two little girls.
I found it fascinating that I felt pretty great while pregnant and incredibly lucky to have pretty healthy uncomplicated pregnancies. I had more energy, less back pain, and although TMI, vaginal dryness I had been dealing with improved considerably.
At the time, I suspected it was in large part due to my improved habits while pregnant. I exercised more regularly, ate more fruits and veggies, drank more water, and prioritized sleep. Overall though, my experiences seemed so different from many of my friends’ and colleagues’ experiences.
Although the pregnancy was mostly rainbows and butterflies, I couldn’t quite shrug off the vague but persistent symptoms I experienced in the months following each of their births:
Bloating. Abdominal pain. Odd food intolerances. Severe fatigue. Foggy thinking. Trouble focusing. Word finding difficulty. Increased back stiffness. Dry eyes & mouth. Painful sex again.
The idea of revisiting these symptoms was much less appealing.
In 2019, with a 3-year-old and infant in tow, I found myself in an even more complicated situation than I imagined.
Though I was not ready yet to seriously consider another pregnancy, my Sjogren’s diagnosis threw an unexpected curveball.
It explained why I was still feeling so terrible.
An explanation for why pregnancy felt comparatively great.
It provided a name to my experiences.
A treatment plan.
It also prompted so many more questions.
As an immunologist, I knew that my lab work including elevated antibody levels and high inflammation markers signaled a lot of potential problems for pregnancy. At the time, my rheumatologist assured me that we would work on getting disease control by starting treatment and going from there.
The good news was Sjogren’s itself didn’t cause infertility and the treatment, hydroxychloroquine, was considered to be safe and actually necessary in pregnancy for those with Sjogren’s and some other related autoimmune conditions.
I had hope.
I started to work on caring better for myself.
Green smoothies. Supplements. Sleep training. An occasional date night.
Until later that summer…
Ugh, I figured it must be another daycare bug.
Until about 2 weeks later with the fevers persisting and fatigue worsening, I turned yellow.
My urine was nearly orange.
This was NOT normal.
My liver was severely inflamed.
I will never forget sitting in the rheumatologist’s office. My hands were clammy, squeezing Aki’s hand tightly, discussing the possible diagnoses and the medications necessary to calm the inflammation.
The biggest worry was autoimmune hepatitis or one of a few related conditions that would require long-term high dose prednisone, azathioprine, and possibly rituximab.
As an immunologist, I knew these medications carried significant risks of long-term side effects and were not recommended in pregnancy. They also were not necessarily safe with breastfeeding.
Josie was a little over a year old at the time, but still loved her mommy snuggles and milkies. Neither of us was ready to wean if we didn’t have to.
The sadness I felt was overwhelming.
I already physically felt ill.
My anxiety was through the roof.
Over the following 6 weeks...
After dozens of appointments, blood draws and a liver biopsy, we learned that the liver inflammation was likely due to a superfood supplement I had been mixing in my green smoothies and possibly the Sjogren’s itself.
The good news was that with stopping the supplement and incorporating some other lifestyle changes, my inflammation was improving.
My liver levels normalized.
I felt so much relief.
And I physically felt so much better.
I felt so much gratitude.
And honestly, in the months following, the idea of another baby rarely crossed my mind. I was focused on learning and healing. Ensuring that I was doing the best I could to stay healthy for my 2 girls.
Stay tuned for Part 2 where I dig into what factored into our decision and preparation to try for another baby…
Did you know that I am launching a podcast next month?
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