The Storm After the Calm: My Postpartum Journey with Worsening Rheumatoid Arthritis
By Cheryl Crow
The Calm: When it came time to try for a baby, my husband and I adopted our usual cautious 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.
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 the baby’s breech position. As I grazed my hands over my growing belly, two questions thrummed repeatedly in the 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 flu 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 medication.
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) Survival, Mastitis, and Flare-Ups: The first 3 months postpartum:
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 1 week check-in, we were told he wasn’t gaining enough weight so I was told to either pump breastmilk 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 4 weeks postpartum. Shortly afterward, 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 3 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 for 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 Remicaideto 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, and 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 three 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.
Stage 2) Feeling Like“We Almost Got This,” or Wayward Optimism: 4-16 months postpartum.
With more regular sleep under my belt, I started feeling ready to return to various “regular life” roles such as returning to work part-time as an occupational therapist (OT). With help from my grandparents, our wonderful nanny, and other babysitters, I returned to work and enjoyed connecting with older kids and putting all my OT training to good use. It was really cathartic for me to put together some of my logistical and mental tips for “Bringing Home Baby: Caring for the Caregiver” on a blog post when Charlie was 4 ½ months old.
During this time, I resumed many of my typical pre-baby level of commitments: I volunteered to lead numerous events through the Arthritis Foundation, spoke with political representatives as an advocate for both arthritis and occupational therapy issues, and served as the chair of the Legislative committee for my state occupational therapy association. I traveled to Japan and Boston to present research on the benefits of social media groups for persons with rheumatoid arthritis, to Keystone, Colorado to lead the young adult program for the Juvenile Arthritis Conference (national family camp/educational event), and to Nashville, TN to present a poster on functional leadership for our national occupational therapy association.
While I cherish each of those experiences and am proud of my professional and volunteer roles and accomplishments, this level of activity started feeling unsustainable as the months went on, and it became more clear that simply eliminating the mastitis cycle and getting back to my regular dose of Remicaide was not going to bring me back to my pre-pregnancy state of low autoimmune activity.
As Charlie grew, my joints started hurting more. To stabilize and support my joints, I had a certified hand therapist make custom wrist and thumb stabilization splints created for my left hand and a thumb stabilization (thumb spica) splint for my right hand when Charlie was about 7 months old. I also received a set of soft, thermoplastic compression and thumb stabilization splints to wear while working or sleeping.
These measures greatly helped reduce additional inflammation from activities, but I nevertheless felt the disease activity throughout my body (not just in my joints)on a new, more acute level. We upped my Remicaide to roughly twice as much, twice as often as my pre-pregnancy level. This reduced joint pain but made me more susceptible to illness. Between January–October 2015, I had numerous sinus infections, prolonged colds, and 2 cases of flu that were powerful enough to keep me in bed for days, in addition to a fungal skin infection.
Despite all these challenges, I initially maintained my former outlook of cautious optimism; I believed that things were about to get better just around the corner. I added a third day of work and continued to “lean in” to all my extracurricular professional and personal volunteer commitments.
In the months after Charlie’s 1st birthday, the cycle of increased medications leading to increased infections/illness started really taking a toll on me. Surpassing the one year anniversary of Charlie’s birth made it hit home that I had felt “not 100%” for his entire life, and as the months wore on it was clear that my disease management had plateaued. I reflected on the fact that I had lived only 1/3 of my life with rheumatoid arthritis, but I had led 100% of Charlie’s life with this disease, and the entire time I had rarely felt like “myself.”
One of my favorite songs is “Defying Gravity” from the musical Wicked, and I have often viewed it as a metaphor for transcending my illness. As the months of being a mom wore on, however, I felt that gravity was taking a bigger toll on me, and I was at a loss as to how to even cope with it, much less transcend/defy it. I was getting sick all the time, losing weight without trying, and began experiencing some claustrophobia-induced panic attacks that I hadn’t felt in years(not even on hot, crowded subways in Shanghai while pregnant!). I felt trapped in my own body with no escape, which increased my baseline anxiety levels.
At the same time, I found it increasingly stressful to manage all the minutiae of Charlie’s life(coordinating various childcare providers, his medical appointments, decisions on everything from which sippy cup to try to how to baby-proof) along with the increasing demands of my own medical management, and my possibly-unsustainable level of commitments. I found I could almost always pull myself together while at work or on a social outing, but I was breaking down at home, which negatively affected my relationships with my husband Gabe as well as Charlie.
I wondered whether a psychologist could help me wade through my adjustment to parenthood and marriage with chronic illness. On an otherwise unremarkable late spring afternoon, I sent an email to a clinical psychologist that a friend had recommended. As I put my phone in my pocket and walked barefoot in the grass toward my son, I swear I actually felt a surge of hope that things were about to get better...and I’ll be darned if that surge wasn’t correct!
3) The New Normal: Accepting that life/parenting/my health is now in a permanent state of flux, which should be depressing but is strangely liberating:
16 months postpartum to present. In retrospect, starting weekly therapy sessions with a clinical psychologist was a clear turning point in my journey towards accepting my life as is, rather than waiting/expecting for it to get better just around the corner. Paradoxically, in accepting rather than deflecting the negative aspects of my current state, I actually feel better rather than worse. Truly Being present with my current state (such as feeling pain or just feeling worse than I’d like) has opened me up to feeling more at peace and even happier than when I was attempting to deflect or minimize my experiences. I’ve benefited from a mindfulness-based approach called “ACT–Acceptance and Commitment Therapy,” which you can learn more about here.
Here are just a few things I have learned in the process of seeing a clinical psychologist:
1) The therapeutic relationship has been more powerful than Anticipated. Regardless of the “outcome” of a visit (e.g. whether or not I can put into practice the things we discussed), the time we spend is meaningful and therapeutic in and of itself. I have felt validated and listened to in a way that feels different and sometimes more powerful than I have experienced elsewhere. In addition, having someone to check in with weekly gives me an emotional anchor to my week, a consistent time I can depend upon to reset and devote time to examining my life in a structured way.
2) I Created a timeline of the 4 main intertwined mental and physical health issues of my life(autoimmune/RA activity, stress/anxiety events, loss of appetite, and claustrophobia/panic attacks), and color-coded them (COLOR CODING FOR LIFE!). With this chart, I saw for the first time how all the aspects of my life are intertwined in ways I had never connected before (see picture). I understand now that when my physical state is less than ideal, I have a much harder time coping with stressful events and any underlying anxieties.
3) I understand and accept my strengths and weaknesses, and my husband’s, in a deeper way than before. For each aspect of my husband’s behaviors that might seem less than ideal, I now see that there is a flip side that is positive and beneficial for our marriage and family. For example, organization is not my husband’s strong suit, but he is extremely flexible; I on the other hand tend to be extremely organized but struggle to be flexible when things don’t go according to plan. Our strengths work together well when traveling, for example; I’m organized enough to get the nuts and bolts together(itinerary, remembering snacks, etc), and he’s flexible enough to help us cope with unexpected twists and turns.
4) I have accepted that I need to put self-care and my mental and physical health first during this chapter of my life, which means scaling back some other commitments. While I’ve lived most of my life with the Improv Comedy Mentality of “Yes, and,” right now I’ve been practicing saying “no,” and it has helped me simplify my life so I can be fully present with my family.
5) I understand that I tend to expend a lot of mental energy thinking about the future, which can be detrimental if not balanced by living in the present. The future can be thought about endlessly because there are always infinite possibilities for what could happen, but a future event is ultimately comprised of only ONE reality. Learning how to reign in excessive future thinking has freed up mental energy for focusing on the present.
6) One of the hardest parenting adjustments for me, aside from health issues, is how quickly emotions swing from highs to lows and back. One minute I may be dreading wrangling a squirmy 30+pound toddler into his car seat because it hurts my hands, but then a split second later he might start singing in the sweetest voice I’ve ever heard, or doing something else that melts my heart, and I have to make sure to pause and drink in those moments because the next minute later he might be throwing a toy car at my head. Through the ACT approach, I have learned how to observe my thoughts rather than judging or trying to change them; previously, I would get down on myself for getting irritated or angry, whereas now I can accept that those feelings are part of my life, and I can observe those thoughts from a more distant stance.
7) I have limited my computer, phone, TV, and e-reader use. Some changes have been super simple: I store my laptop in the closet so that I have to intentionally take it out rather than reflexively use it because it’s in my visual field. I put my phone on the counter while at home rather than having it always on me physically. Additionally, I have become more strategic with how I engage on social media groups on the topics of parenting and rheumatoid arthritis; I have “stopped notifications” on all my groups so that I look at those topics when I’m in the right mindset and not have them potentially trigger anxiety while I’m looking through my news feed. I also have nightly times when I target closing down my computer, phone, and e-reader, which has helped me wind down at night.
8) I have mourned the loss of my health in a deeply present way for the first time. I have mourned the shadow life I can see myself living, where I can pick my child up without pain and feel the energy I felt while pregnant, and in my more distant memories of medicated remission. I accept that even if I were imperfect health, there would still be limits to what I could achieve in life, but I also accept that my health is an additional limiting factor beyond my baseline mortality, one that given the choice, I would choose to live without. After mourning what I’ve lost, however, I have felt more fully present and grateful for what I still have. One of my favorite quotes comes from Viktor Frankl’s “Man’s Search For Meaning:
“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one's attitude in any given set of circumstances, to choose one’s own way.”
- Viktor Frankl, Holocaust survivor
In the first 15 months of Charlie’s life, I kept waiting until we could “figure things out” and when I would feel “back to 100%” with my health. Through therapy, I’ve realized that more important questions to ponder are:
What if this is my only chance to be Charlie’s mom (and the Mama to Gabe’s Dada), and it’s not how I imagined or hoped I would feel health-wise, but it’s the chance I get?
What can I gain from accepting my world as is, rather than anxiously attempting to control it or tweak it so I can achieve this elusive concept of “feeling better” in the future?
In fixating on the future, what have I lost in the present?
Through therapy and additional self-reflection, I’m grateful that I now feel equipped to embrace my reality, whether it is the calm or the storm.
About the Author
Cheryl Crow is a pediatric occupational therapist, swing dancer, and mom to an active koddo. She has had rheumatoid arthritis since age 21. She blogs and hosts a podcast at ArthritisLife and runs the popular Arthritis Humor Tumblr blog, in addition to patient advocacy work with multiple rheumatology organizations including Creaky Joints. She lives in the greater Seattle area and enjoys volunteering with the Arthritis Foundation and her state occupational therapy association.
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