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8 Lessons Learned After A Tumultuous Postpartum Experience With Rheumatoid Arthritis

rheumatoid arthritis family happiness

When it came time to try for a baby, my husband and I adopted our usual cautiously optimistic approach. We started trying to conceive the earliest we thought we’d feel ready, with the underlying assumption that it might take longer than average because my body didn’t always function normally.

Imagine our surprise when we discovered we were pregnant on the FIRST TRY, while living in China nonetheless! We gleefully scaled the Great Wall of China, ate our way through Japan, squeezed in as much enriching work and volunteer experience as we could, and (just in time for my cravings to become more oddly specific) we made our way back to the US for my second and third trimester.

The Calm

I was among the fortunate women whose autoimmune disease goes into full un-medicated remission during pregnancy. I felt more energetic than I had since before my diagnosis at age 21, despite a mild case of gestational diabetes. I enjoyed working part time as an occupational therapist in a pediatric clinic until the week before my scheduled C-section due to baby’s breech position. As I grazed my hands over my growing belly, two questions thrummed repeatedly in back of my mind: “Who are you going to be? Who am I going to be?”

In the 12 years prior to pregnancy, I experienced some ups and downs while managing my rheumatoid arthritis, but for the most part my medications controlled it enough to allow me to perform essential daily life tasks and cherished recreational activities such as swing dancing. It took a mild to moderate amount of adaptation, but I was able to live life to its fullest despite my disability (and in fact, I didn’t often define it as such). I tended to catch colds and flus more often than my peers and had to protect my sleep, but not to the extent that it interfered with my life in an extreme or prolonged way.

In the weeks leading up to Charlie’s birth, I learned that many people who enjoy remission during pregnancy have terrible flare-ups postpartum. I cautiously hoped/planned that my doctors and I would be able to adjust my medications and settle on a new routine that would allow me to perform the basic functions of being a mother without excess pain or adaptation. It seemed reasonable to expect this, as I had been able to recover from the massive flare-up that preceded my diagnosis within a few months of being put on biologic medications.

The Storm

Unfortunately, my case has ended up being more difficult physically and mentally than anticipated. My postpartum story is best captured in three sections in chronological order:

1) Survival, Mastitis and Flare-Ups

2) Feeling Like I “Almost Got This,”or Wayward Optimism

3) The New Normal: Accepting that life/parenting/my health is now in a permanent state of flux (which feels like it should be depressing but actually feels liberating for some unknown reason)

Stage 1: The First Three Months Postpartum

Survival, Mastitis and Flare-Ups: Like many new parents, my husband and I found the first weeks home with an infant disorienting, but we were extremely fortunate to have a lot of family support to help us take care of Charlie and ourselves. Charlie was objectively an “easy baby” on all accounts, but he tended to be a sleepy-eater and often fell asleep while breastfeeding. At his one week check-in, we were told he wasn’t gaining enough weight so I was told to either pump breast milk or supplement with formula. I started pumping to supplement for the first month, then gradually introduced formula so that I could get adequate rest (rather than having to wake up when Charlie was asleep in order to pump).

I took my first postpartum dose of Remicaide (immunosuppressant biologic medication I had been on from 2007-2013 when I went into remission during pregnancy) at around four weeks postpartum. Shortly afterwards, I felt extremely fatigued/run down and started feeling a hot, intense pain in my armpit; I then got the chills and started running a fever, and was told that I had mastitis, a systemic infection usually caused by a plugged milk duct. I was put on a 10 day course of antibiotics, which cleared the infection.

Unfortunately, I contracted my second bout of mastitis just days after I got my next dose of Remicaide. This time I felt even worse, and was instructed to pump or feed Charlie at least every three hours to prevent a plugged milk duct. At the same time, my joints were starting to hurt more, and I found it hard to hold Charlie for long periods of time. After waking up and pumping while my baby slept in order to “clear the mastitis,” and feeling the uncomfortable sensation of my body raging against itself as my immune system attacked the lining of my joints and other organs, I started feeling trapped in my own body.

I faced the first of what was to be many conundrums as a parent with a chronic illness: do I do what is best for me, or my child? What if what is best for him is actually worse for the family unit as it entails such a negative impact on me that I cannot care for him to the extent I otherwise could? I desperately sought a solution which would allow me to continue breastfeeding/pumping to some extent, but in the coming weeks it became clear that this was not a viable option, as I got mastitis a third time WHILE ON ANTIBIOTICS from the second time. That was one of the low points.

It was clear that my body was more susceptible to mastitis due to Remicaide (which makes me prone to infection), and I needed Remicaide to help me quiet the autoimmune attack on my body so I could perform all the physical tasks for Charlie with less pain and joint damage. Remicaide is not administered during an active infection, so the chronic mastitis was interfering with the critical period of postpartum medication management because I had to keep putting it off while on two week courses of antibiotics. The decision basically became: breastfeed/pump, which jeopardized my short and long term physical and mental health due to recurrent mastitis and the lack of medication for my RA, or wean and feed Charlie formula, which was not as good of a food source but still provided for his basic needs, and would best position me to fulfill all the diverse aspects of being his mom beyond serving as a food source.

The lactation consultant unflinchingly encouraged me to wean and take care of my health, and my husband, family and doctors were all enthusiastically on board (even the pediatrician!). There is so much pressure to breastfeed, that I was actually unique in being thoroughly supported in the decision to wean earlier than is officially recommended by the American Academy of Pediatricians. The last straw was when I got mastitis a fourth time while attempting to wean; I was instructed to disregard the typical recommendation and just wean cold turkey, which actually worked. This was just before Charlie turned 3 months old.

While many women report feeling depressed or mood swings when they stop breastfeeding, I felt elated, and for the first time since his birth I felt it was possible to be fully present when I was with Charlie. Formula allowed my husband or other caregivers to take care of more of the night feedings so I could catch up on critical rest. I felt like I really looked at my child for the first time, without feeling distracted by what my next step had to be (“When do I need to pump, when do I need to take my antibiotic, do I need to call the infusion clinic to postpone my medication?” etc). He was still small enough at this point that with my current dose of medication, I was able to hold him for longer without pain, and I successfully experimented with various assistive solutions such as using baby wraps/carriers.

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Comments

  1. THANK YOU for sharing this. I am a person with chronic pain/illness who also wants to have a baby. My partner wonders how we could possibly do that, with my health dipping so low at times. Your honesty about your struggles and successes gives me hope.

    • I’m so glad that my story gives you hope! It is definitely possible to have a baby despite chronic pain/illness, but it is a lot more enjoyable if you can get as much help as possible, physically and emotionally. Learning to ask for help is probably the most important skill one can develop during pregnancy/raising a child. I’m still learning it myself. Good luck and keep us posted! -Cheryl

  2. thank you. thank you — you have given me so much support and i have learnt a lot from your article. just simply thank you.

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  4. I am going through this exact thing right now, and finding this made me cry tears of joy. I am an occupational therapy assistant in Oregon and have suspected autoimmune disorder for a while. I am 12 weeks postpartum and on my third round of mastitis. ( I also had mastitis in pregnancy though) I asked my doctor to run a panel for thyroid issues as a stab at understanding why I have had extremely low milk supply with both of my babies. She found that I tested positive for RA. That was four weeks ago and I continue to develop mastitis. As soon as I’m off antibiotics I feel it creeping back. I see a rheumatologist in a month. Thank you SO much for sharing this, as I too have been trying to figure out what to do about weaning so that our family can have a break from the fevers and pain.

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