Amid tragedy, I’m facing a mix of stress and chronic illness

My parents went missing in western North Carolina on Sept. 27, the day after Hurricane Helene made landfall, dumping months worth of rain in just a few days. The flooding and destruction were widespread and catastrophic. At my parents’ home, the water level reached about 8 feet. And on Tuesday, after 19 days, we learned that remains believed to be my parents had been found. DNA verification is pending, but I know they’re gone.

Devastated is an understatement. I’m devastated for my parents; for my children, who are losing a set of grandparents; and for the entire western side of the state. The place I called home for 29 years looks as if it’s been bombed. And that same place took my parents from me.

We tirelessly searched for my parents and worried about other family members and friends in western North Carolina. We took supplies to those in need, and we dug through toxic mud in the ruins of what was my parents’ house. And now this.

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The stress of this news is, understandably, overwhelming — which isn’t good as I have the rare disease atypical hemolytic uremic syndrome (aHUS) as well as lupus.

Stress is bad enough for a healthy person. Left unmanaged, it can cause high blood pressure, depression, obesity, heart disease, and more. For someone with rare and chronic illnesses, it’s even worse. In short spurts, it can activate the body’s immune response by releasing the hormone cortisol, which is bad for someone with aHUS. It can even trigger a relapse.

I’ve been trying to keep my personal life as close to my normal as possible, because I still have responsibilities that aren’t negated by a natural disaster with such personal consequences. But it’s hard to do. My children still have school, I work part time and write this column, I continue undergoing aHUS treatment, and I have doctor appointments to attend and a home to maintain. Added to that are the hundreds of calls, text messages, and social media leads and comments that need my response.

It’s vital that I effectively manage my stress, because a disease relapse is the last thing I need right now, particularly because of my permanent kidney damage. A relapse, in fact, could land me back on dialysis. I must intentionally focus on self-care as I take my stress, and my loss, one day at a time.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.