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Showing posts from May, 2020

Redefining a Good Time

When Mommy is chronically ill, "now is not a good time," takes on a whole new meaning. When Mommy is in bed most of the day, most days of the week, of the month and of the year, seeing Mommy in bed is normal.  When Mommy is vomiting and having excruciatingly violent abdominal spasms, "not a good time" is during the actual vomiting or diarrhea episodes. "A good time" to talk to Mommy is the time in between expulsions. Even though Mommy is lying in bed or, more likely, lying on the bathroom floor because she doesn't have the energy to crawl back to bed, that is still "a good time" to talk to Mommy. It's the only time my kids get. They never know when I'll be violently ill again.  So, this is how our life looks: Mommy vomits.  Mommy collapses on the bathroom floor, sweating and trying to catch her breath.  The kids hear a pause in retching and poke their heads around the corner of the bathroom door.  They say, "Mommy

Defying Protocol

There are very few things about me which can be defined as “ordinary.” I do not conform to societal, medical or parenting standards dictating how things should look. In fact, I believe there are several ways to accomplish any task and I rarely choose the route followed by the masses. Although I have always been spirited and full of energy, the need to seek creative solutions to daily, mundane issues arose when I got my first autoimmune illness at the age of 22. My need to cope with and get treatment for a chronic illness resulted in a lifetime of finding alternative ways to complete tasks at home, school or work. While there are societal norms and protocols for most everything, I rarely follow the unwritten rules. Instead, I defy protocol in order to create a life for myself and my three beautiful children. How to schedule around doctor's appointments, medical infusions, and operations is just not provided in society's protocol handbook. I refuse to accept there is no place fo

Being and Becoming

My high school yearbook quote was, "Life is not a having and a getting, but a being and a becoming." I aspired to fulfill this quote, but didn't truly understand what it meant until I was much older. For as long as I can remember, I battled anxiety. I was extremely high functioning in public. In private, I had very severe coping mechanisms which included gagging until I vomited bile. I didn't recognize this daily morning ritual as a coping mechanism until I was in my 20’s. Anxiety felt normal to me. If I wasn't anxious about something, I believed bad things would happen to me. I inherently believed I had to suffer in order for life to be good.  It's no surprise that I married a narcissist. The type of the love he poured into me in the beginning was so powerful and intense that I felt worshiped. I needed that kind of love. I needed that help with my anxiety. I needed someone to "save me" (from myself or from life).  Of course, that's the biggest