It may have taken years but I am coming back!

When women with Rheumatoid Arthritis (RA) get pregnant, their RA goes into remission. At least that’s what my doctor told my husband, Robert, and me when we went in to discuss the possibility of having a baby. At that time we both were professors with busy careers. I was 28, and according to my doctors, my RA was on “cruise control” with the help of Humira. Thus, we were given a big “thumbs up” from the medical community to get pregnant. I would not trade our son for the world, but boy were they wrong!

There was no remission for me, not unless remission means running head first into kidney failure and an abrupt pause in my career. After many months of baffled doctors, biopsies, and blood tests, I was diagnosed with Essential Mixed Cryoglobulinemia Type II – a complication of my RA that was causing kidney failure. I was officially the complicated, rare case “only found in medical journals”. In other words, my bewildered doctors and nurses all but labeled me a freak of medical nature. After being in the hospital for two weeks with out of control edema, swelling, that resulted in 50 pounds of excess fluid filling my body, I had to have a C-section just 28 weeks and two days into my pregnancy, and our son, William, was born at an astonishing one pound 15 ounces, a micro-preemie who fit in the palm of my hand.

The days that followed were like living a triathlon loop of professional obligations, myriad doctors’ appointments, and timed visits to the Neonatal Intensive Care Unit (NICU). All of this kept my husband and me on the verge of collapse, tears, and, in the good times, utter and joyous thankfulness that things had not gone as badly as they could have. While our son suffered a few setbacks, he remained in good condition and slowly grew stronger by the day. I will never forget the first time I got to actually hold him. For most mothers, holding their newborn child is a reward granted soon after birth. I, however, had to wait two weeks before I could hold my baby, and then I was only allowed to for thirty minutes a day. Those daily thirty minute doses of motherhood became the center the whirlwind of my life revolved around.

Then finally the day we had been waiting for came. Sixty days after William was born, he came home from the NICU on my 30th birthday. The best gift ever! Fortunately, he had very few complications after coming home and has grown into robust, happy four year old who is as smart as he is cute. I, however, remained sick, very sick for years. This is why I am on a mission to find every possible tip and trick to make chronic illness and motherhood as joyful as healthy mothers who do not have to juggle medical issues as well as motherhood and careers or simply motherhood, a full time job in itself.

My mission has been a roller coaster but I am pressing forward and with the help of a solid medical team and a combination of Remicade infusions every 5 weeks, Cellcept daily, and a relatively small amount of other medications (opposed to over a dozen when Will was first born). I have been able to write a practical book to help other moms with chronic illness titled How to Be a Good Mommy When You’re Sick: A Guide to Motherhood with Chronic Illness (MSI Press) and am preparing for my re-entry into academics as an Assistant Professor of Reading at a State University in August. My struggle with RA is daily but despite setbacks, I will continue to fight for the life I want to live as a loving mom, wife, and professional.

Emily Graves
http://www.chronicillnessandmotherhood.com/

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (3)
  • Michele
    4 years ago

    I had a very different experience. With my first child (13 years ago) I went into remission during pregnancy but symptoms came back harshly afterwards. Then with our second child (8 years ago) I went into remission and have stayed there. Yet no one can tell me why… not even my Rheumy. I rarely find any blogs or medical research on going into remission following child birth and so I would like more information on that. I am currently not on any meds but I also wonder if there is research that has been done on that as well because my levels are still elevated but I am a-symptomatic… no swelling and no pain. Just curious if you have researched this angle of RA and child birth.

  • Emily Graves author
    4 years ago

    Hi Michele,

    How wonderful that you have been a-symptomatic! I have been on Enbrel, Humira, or Remicade for over a decade so do not know personally but have cousins that experienced remission and are doing great! One cousin decided she was doing so well she would have all her kids in a row – 4 in 6 years. Now, she is still doing really well. I have been actively participating in an OTIS study (http://www.mothertobaby.org) since I found out I was pregnant but do not believe they have come up with any concrete answers. I was on Humira until 20 weeks of pregnancy per doctor instructions. What role that played in my situation is hard to say. Will is doing great so Humira did not harm him. I do know that being on the maximum dose of Remicade has not only helped with “typical” RA problems but also most likely saved my kidneys. I went from being told I was headed toward a transplant list to being stable. That does not really answer your question but it is what I know:) If you have a minute to check out the OTIS site, they conduct continual research so may have something you find useful.

    Thanks for the note!
    Emily

  • Mariah Z. Leach moderator
    4 years ago

    Hi Emily ~

    Thank you so much for taking the time to share your story. As a mama with RA myself, I can relate to a lot of what you went through. I didn’t get any remission during my second pregnancy either, though my complications were not as extreme as yours. Your perseverance and strength as a mother is inspirational to me! Hang in there, mama!

    ~Mariah~ (Site Moderator)

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