Just Because I Have Chronic Illnesses, Doesn’t Mean I've Forgotten You


Each time a healthcare professional asks when I would like to schedule my appointment, I get a punch in the gut. Needing to glance at my calendar does that to me. I wonder how my family and I will be able to afford the co-pays, often realize I’ll have to cancel a lunch date with my best friends and occasionally feel so frustrated and overwhelmed that I consider abandoning doctors and self-care altogether.

Admittedly, I’m still learning how to balance my health care and the rest of what life offers. Right now, I’m seeing how well I do while only making room for two professionals.

Like many with mental and physical conditions, I push my limits, borrow more time and hold out until the morning to see how I feel then, all because I would much rather spend time driving around with my sister or on a date with my husband than be on the phone with my doctor or in bed with a heating pad.

Also, suctioning my stepdaughter Thumbelina’s trach and giving my stepson, Sticky, his baths are more important than finding a moment to take anti-nausea medicine the second I realize I need it. Those things are paramount to the children’s care, and they fill my heart with love and warmth greater than I ever knew existed. I wouldn’t have this any other way.

Such is parenting. Such is loving my family. Such is my paradise.

My intent in saying this isn’t to complain or play martyr. I can’t stand the thought of doing things differently, and, as I said, I’m still learning to achieve balance. Spoonie or not, everyone makes sacrifices and strives to live his or her best life. Each parent and stepparent goes above and beyond to show love to the children in their lives. Loyal friends do their best to show love and keep promises. I don’t want an award or any kind of sympathy for doing what’s currently right for me and mine.

But I do hope to shed light on how hard I try and how hard others like me try. I’d like for the people in my life to know how much I care about them and that I haven’t forgotten.

Coming over to watch a movie and eat popcorn would be the highlight of my week. Running around town to find cotton fields or old buildings to photograph is one of the most exciting things I can imagine. Obviously, doing chores to keep the house beautiful for guests and my family is important to me.

If ever I’m too fatigued or sore to give those things 110 percent, please understand. I love you dearly, and if I could, I’d live the way I used to — tirelessly hurtling through life at the speed of sound with you.

While I’ve had to make room for chronic illnesses in my life, I want you all to know that you are my reason for living.

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