Today I'm going to share with you what it's like to live with chronic illness. Because my full-time job is caring for and nurturing two little people, it's inevitable that in explaining how I manage my illness, I share a bit about how I manage parenting in the midst of it. So welcome to tales from the motherhood: parenting with chronic illness.
After several years of sporadic symptoms (nausea, diarrhea, indigestion) starting as early as high school, I was diagnosed with ulcerative colitis in February of 2001. My husband and I had married the previous Summer, moved across the country to start graduate school, and on top of it all, I was stuck in a job that was frustrating and unfulfilling. With the number of major life changes couple with high emotional stress, my body started to shut down. (I later learned that stress is my major trigger for sickness). In my agony and frustration I met with a doctor who was the first to tell me, "chronic diarrhea and nausea is NOT normal." It had been my normal for so long that I was completely out of touch with what healthy looked like.
Maybe you've seen this little ditty floating around the internet. Yes, indeed. Colitis (UC) involves many unfortunate bathroom-related situations.
A G-rated version of UC goes something this...always: 1) knowing the closest restroom, 2) having extra underwear accessible, 3) not getting to eat a lot of delicious things, 4) being embarrassed by your own gas, 5) avoiding Mexican food at all costs, 6) taking along twenty-plus pills and supplements when you go out to eat (which isn't often because restaurant food is tricky).
At this point I was only 21. I was young and used to a degree of freedom. My UC diagnosis seemed like a big heavy iron door slamming on my future. Thankfully, I had a great doctor who was most concerned with restoring my health and improving the quality of my life.
Within two years of being diagnosed, after following my doctor's medical protocol and sticking to the specific carbohydrate diet, I was symptom-free. Other than the occasional bad day, my health was really quite good. A colonoscopy in the Spring of 2004 showed no signs of colitis. I had been completely healed! For the next several years, I followed the diet on and off, always took my medication, and tried to monitor my stress. Managing my illness was fairly easy when it was just me.
Enter pregnancy number one. I had no problems at all until the very end of my pregnancy, when I had a minor flare. I was a few weeks away from delivering my baby and my mom was in the middle of a super strenuous time of breast cancer diagnosis and subsequent chemotherapy. It was a stressful time and my body was showing the effects. Miraculously, after the delivery of my daughter Maddie I regained my health. Life was good, parenting was filled with joy, and I relished in my daughter.
After my second son was born is when things started to go downhill. We exchanged thrush back and forth many times. Then I got mastitis. A few weeks later, I got mastitis again. Then again. By the fourth bout in six months, I was quite sick. I had never experienced such acute pain and illness as with the mastitis. It was WAY worse than childbirth for me. In a desperate attempt to feel better, I started on antibiotic therapy to kill off the yeast. But as any sufferer of colitis knows, taking antibiotics is like asking for a flare.
Without totally boring you, the science behind a healthy intestine has much to do with the balance of good bacteria (think the active cultures in yogurt). A lot of stomach issues have to do with bad bacteria taking over (think E. Coli). Antibiotics kill off everything; they don't just target the bad. So essentially, with the thrush, mastitis, and medication treatment, my body was stripped of all its protection.
My body entered a lengthy season of sickness. Having two energetic, outgoing and demanding kids to care for added to the stress. The next three years were a roller coaster of all the joy of raising my kids coupled with the stress of managing my illness. I had to make a lot of changes to our routine in order to accommodate how I was feeling. For example, there were several months in the past year in which I chose not to make the five-minute walk from our house to the park because there is no bathroom on the way. Things were really bad.
Another list to give you an idea of what it is like to live with UC...parenting in the midst of a UC flare means: 1) sometimes driving to the park instead of walking, 2) having your kids get away with all sorts of shenanigans while you are stuck in the bathroom, 3) shipping your kids off to friends and family because you're too sick to take care of them, 4) explaining over and over why Mommy doesn't eat the same foods, 5) spending lots of extra time in the kitchen making gut-friendly meals, and 6) spending a lot of time on your knees in prayer, both for good health and for patience to make it through the day.
But the good news (yes, there is good news!) in all of this is that while my body is totally imperfect and insufficient, God is perfect and sufficient. In all the ways my body fails me, Christ sustains me. This was made abundantly, exceedingly, miraculously clear this past year when I reached my sickest point yet. After 12 days in the hospital, Jesus met me in a very tangible, loving, amazing, humbling way. You can read all about it here.
Managing chronic illness means a lot of really hard days. BUT (no pun intended), it also means I have a built-in need for something outside of myself. Just as my physical self needs medication to supplement and heal, my spiritual self is completely dependent on Christ to give me strength and perseverance.
Since my bout in the hospital, I've started seeing a naturopath. She's got me on all kinds of helpful vitamins and supplements to replenish and heal by body. I feel better than I have in a few years. My symptoms have totally improved and I am steroid-free.
And best of all, my kids have their mom back. With good health comes the ability to walk to the park, create new and exciting recipes with foods I can eat, and teach my kids about healthy living.
If you suffer from chronic illness, want to know more about the specific carbohydrate diet, or if you want to know more about the really good news of who Jesus is and his love for you, please drop me a line. I'd love to chat. ben_beckyjoyce (at) yahoo (dot) com