A Grandmother’s Lesson About What Really Matters
(Friends: A few months ago, I asked Carrie Gallagher, our Chief Marketing Officer here at Balancing Life's Issues, to contribute to this column. She wrote an amazing story about living with a very serious autoimmune disorder. So many people wanted to know more about her journey, so here’s Carrie writing about her challenging road to becoming a parent. —Wendy)
My grandmother was always my hero. She helped my mother raise me, so she already had a special place in my heart. But it was her perspective, the way she approached life, that had the biggest impact on me. I sometimes can’t believe that she’s no longer with us.
Going through her things the other day, I found a list that she had made of all the terrible things she encountered in her life. Next to each of them she wrote what she learned from them. At the bottom of the page she added: “None of this matters because I have eight healthy grandchildren.”
I knew from an early age that I wanted children of my own. But when I was in my twenties, I was diagnosed with Granulomatosis with Polyangiitis, a fairly rare disorder that causes inflammation of the blood vessels in your nose, throat, lungs, and other places. It constricts blood flow and can cause serious damage to your kidneys and other organs. It was not at all clear that I could even get pregnant.
When my husband, Dan, and I decided that we wanted to have a baby, I was being treated twice a year with infusions of the monoclonal antibody drug Rituximab. My doctor said that to be on the safe side, I had to wait for nine months until the drug was completely out of my system. At that point we tried, and we were thrilled when I got pregnant the first month. But then, six weeks later, I had a miscarriage.
Of course, I wondered if there was a problem. Was it me, my health, the medication? My doctor said that there was no reason I couldn’t carry a baby to term. These things just happen sometimes. So four or five months later, my husband and I tried again. Once again I got pregnant, and once again I had a miscarriage after six weeks.
Honestly, I felt more devastated than the first time. But I focused on everything that was positive in my life. I figured out how to manage stress and how to stay resilient. I really loved my job at Balancing Life’s Issues and appreciated being able to submerge myself into my work.
Dan and I decided to shift our focus. We started thinking about where we would live in the long term and decided to buy a house in Connecticut. There were tons of projects after we moved in, so I didn’t have time to worry about having a baby. So, as these things often happen, I found myself pregnant again, this time unplanned.
I worried about everything and called my doctor constantly. Even after six weeks had come and gone, I was still so scared. This time I didn’t tell anyone about the pregnancy except my closest family members — and Wendy, of course. She’s my rock in times like these.
Long story short, the pregnancy was successful. We welcomed our daughter Riley into the world. Yet even after a healthy pregnancy, a few weeks after she was born I was back in the hospital to restart my infusions, which of course means I couldn’t breastfeed.
About two years after my daughter was born, I started talking to my doctor about having a second child. About six months after my latest infusion, I got pregnant again. It was a little earlier than we had planned, so once again I held my breath. But that pregnancy was also successful, and we had my son Logan.
Granulomatosis with Polyangiitis is not hereditary, so the kids were born super healthy. But pregnancy did take its toll on me. After Logan was born I had flare ups of the disease, not at all surprising because of the postpartum strain my body was under.
Everyday stress, like you have all the time raising kids, can cause a flare up. For me, that means sinus pressure and bloody noses. I’ll feel it in my joints and moving my wrists or elbows can be hard. I may have muscle pain and weakness. Sometimes when it’s really bad I’ll have a rash. Sometimes all of this happens at once, other times it’s just one of these symptoms.
Even now — 10 years after my diagnosis — my whole life is about managing my health. Every two months we have to test my levels of antineutrophil cytoplasmic antibodies, which can cause problems by attacking healthy cells. Rituximab helps prevent this from happening, but it also decreases my body’s ability to fight off infections.
Having an autoimmune disorder means I’m in the high-risk category for Covid-19, so I made sure I got my first two vaccinations. But when I had blood work done, it turned out that I hadn’t developed the antibodies that fight off the disease. It turns out Rituximab doesn’t interact well with Covid-19 vaccines. So once again I had to wait until I was off my medication for nine months.
Not long ago, my doctors told me that I should probably skip my cousin's wedding in Colorado because of the high altitude and my problem with nose bleeds so I had to skip it. Some people ask me if this makes me sad sometimes, but it doesn't. I often think about my grandmother’s lesson that “none of this matters.” Bad things happen, but we have to find a way to learn from them and move forward.
Ultimately the way I look at it is, I get to live my life, I get to raise my kids, and I have had the chance to find happiness. Yes, my decisions about how I live my life have to be extremely intentional, but if I didn’t take care of myself to the extent I do, I may not be able to be here. That’s the lesson I’m choosing to take away from all this.
Thank you for that beautiful and uplifting story, Carrie. It is very inspiring. I am a grandmother with a couple of autoimmune disorders and am now 2 and a bit years free of cancer. Yup, there were some tough times when I felt crappy and the first autoimmune disorder had not been diagnosed. Once it was I was pretty sure I was going to live (I hadn't been so sure during the wait). I hadn't planned on retiring at 65, I figured I could teach nursing easily till I was 70. But the darn autoimmune wouldn't let me work that much. Do you think it was telling me something? Slow down. I tended to do a lot - like work full time and go to school and be active on committees. I learned that lesson, but it took the cancer for me to really click in that I must slow down.
I am now so thrilled to be alive. I do get frustrated, probably a bit too often, but I am working on that, when the fatigue, pain, nausea, and itching are driving me to distraction - but I am so glad that I am experiencing these things, cause that means I am alive.
I have learned so much in the last 8ish years and I am so much more grateful for my life, my family, friends, and my ability to continue to be active in a different way. Life is beautiful.