Making room for a busy life, even with liver disease

My dear mother was a practical lady.

She loved homemade bread and enjoyed making it for our family. The Mormon bread I remember from our family kitchen was made with milk and eggs, much like this homemade white sandwich bread. She made delicious loaves we slathered in butter or peanut butter and jelly. The Parker House rolls that accompanied our fancier dinners were always a hit. Her heavenly buttermilk biscuits came straight from a chef’s heart. Everything was made with love, patience, and a mother’s desire to show her children and husband just how much she cared.

Then everyone, especially my brothers, grew into rabidly hungry teenagers. One lovingly created loaf might as well have been a pie cooling in a window with cartoon thieves lurking nearby. It was gone in 60 seconds, accompanied by peanut butter, grape jelly, and a lack of contrition. That’s when my mother started buying more store-bought bread.

I don’t blame my mom for voting for convenience over a labor of love like bread. As much as I loved the results of her hours of work making us delicious food, I’d gladly have taken a biscuit popped from a can with a squishy, giggly dough creature on its cardboard wrapper if it meant more time with my mom. My foray into motherhood confirmed this. So did getting metabolic dysfunction-associated steatohepatitis (MASH).

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Adjusting plans

There are days when I wish I weren’t so rushed. Having MASH doesn’t necessarily slow me down in and of itself. Managing it, however, means something different. It starts with how I begin my day, including the breakfast I’m going to have. But it doesn’t end when the sun sets because I live with MASH 24 hours a day, seven days a week.

I have pills to start my day and pills to take before sleep, and that’s the easy part. Managing my health also means making sure I’m eating a healthy diet, getting regular low-impact exercise, and paying close attention to changes in my body, whether subtle or obvious. It all takes time, something already in short supply for everybody. I won’t get started on all the other things I have going on in my life, but like you, I’m a very busy person most of the time.

Next month, I will be starting a new position that requires me to leave my home. I’ve been working from home for several years with all the conveniences that come with it. My bathroom is close and private. My refrigerator is stocked with things I enjoy eating. The only time I have to worry about someone looking over my shoulder is when my cats want to join me for naptime in my office/studio. I haven’t had to wear nice clothes or pack a lunch in a long time. A little meal planning could help make that adjustment easier.

In September, I was proud to become a fellow in the Dr. Stephen A. Harrison Patient Advocacy Fellowship Program. Harrison was a staunch advocate for people with MASH and for putting patients at the center of liver disease research. He believed patients should be partners in that work, with a louder voice in decisions affecting their care.

Alongside my fellow advocates, I will have opportunities to learn from and engage with doctors, researchers, and pharmaceutical companies, helping bring patient perspectives into research and treatment development. I will be traveling and learning a lot, and I am excited to share my new knowledge with my beloved readers. Of course, traveling with a chronic illness means my health needs a place on the itinerary, too.

I may be getting older, but my life is not slowing down or becoming less complicated. I am excited for what is to come, though. Yes, that means buying a new lunchbox, luggage, and professional attire — more things to add to my very busy life. I don’t mind buying cute accessories to manage it.

Living with a disease like MASH doesn’t have to mean giving up your plans, although it can mean adjusting them. For me, this next chapter will require extra planning, some patience, and a little motivation.

And, as my mother understood, sometimes it means buying the bread.

Note: Liver Disease 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 Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.