Well, we’ve got to eat, right? If the saying, “you are what you eat” were literally true as a child I would have looked like a jar of peanut butter. Not a pretty thought, but that was just about all I would eat. Many kids are picky eaters but I believe children with serious illnesses are particularly so and maybe not for the reasons you may think. As a child my illnesses and health condition didn’t affect my ability to eat or necessitate strict dietary adherence. When your life is a daily whirlwind of doctors appointments, being poked, prodded and examined you feel a little out of control. I can recall coming down to dinner one night as a child and asking my mom what was for dinner, whatever her response I didn’t care for it and asked for something else. Her response, “this isn’t a restaurant, if you don’t like what is being served, you don’t have to eat.” Oooh, I don’t have to eat? I can have control over this situation? Okay, no food for me! Obviously, I was alright missing a dinner or two here and there. It honestly sounds worse than it was, but when I had a choice, peanut butter was all I wanted. Generally I wanted a plate of saltine crackers covered in peanut butter, but occasionally I could be talked into celery sticks or a piece of bologna (yes, you read that right!) smothered with peanut butter. My mother carried packs of those neon orange crackers with peanut butter you find in vending machines in her purse for emergency feeding purposes. My only complaint, these wasn’t enough peanut butter on those crackers. 🙂
The summer before my 8th birthday, I was hospitalized for 2 months as I underwent a series of experimental therapies. During that stay my food story changed when an eagle-eyed nurse saw me sizing up the hospital cafeteria menu for the upcoming week and shared with me some information that blew my mind… Did you know you don’t have to check off the boxes as to which food offering you want each day? You can write in whatever you want, and they will make it for you. Seriously! When given this kind of opportunity for choice my interest and engagement with food took and abrupt turn down a road of somewhat greater variety. Now, thankfully it has been a long time since I’ve endured a long-term hospitalization so I cannot say if this remains true for adults or if I just got the benefit of pity on a long-term young hospital patient, but boy was I grateful for that little tip!
It took some years but I expanded my food repertoire further beyond peanut butter and sometime in my early 30’s discovered the important connection between what I ate and how that food made me feel. Through lots of trial and error and consulting with various doctors I was able to create a dietary plan that I could live with and fit into my lifestyle. Well, you know the way things go, about the time I had things running smoothly there was a roadblock, I was diagnosed with hypoglycemia. It was back to the drawing board as my diet became even more important to my health, wellness and ability to function on a day-to-day basis. My journey during this time led me to become a pescatarian and eating 5 or 6 small meals throughout the day. That was working well, but it was’t the end of the story.
A few years ago I took my Buddhist refuges and became a vegetarian. You guessed it, that meant another consultation with my endocrinologist and immunologist. In addition to SCID-ADA I have Hashimoto’s thyroiditis and hypothyroidism so my endocrinologist warned me against adding soy and soy products into my new dietary regime. Soy avoidance is a controversial subject but as my doctors know my particular situation best I’ve followed their recommendation.
When people find out I’m a vegetarian most reply, “oh, you must eat salads all the time.” Actually I don’t eat salads all the time, because of the hypoglycemia it’s important for me to add carbohydrates into most of my meals to stay in tip-top shape so salads are just a part of my bigger dietary picture. For example my diet includes, cereals/grains/breads, soups, veggie sandwiches and burritos, lots of nuts and beans. Just this week the husband and I made the most divine cauliflower baked ziti! Like everything in life, my diet is an ever evolving work but with so many vegetarian recipes and ideas available online it has become easier to focus on eating locally, simply and seasonally. Since I started following an lacto-ovo vegetarian diet, I cannot tell you how good I feel…not to mention how eating so many vegetables makes your skin glow! So nowadays if “you are what you eat” I would look something more like this…
I’d love to hear what you eat to feel your best!
For information on the immune system’s building blocks and optimizing health through diet and nutrition, the Immune Deficiency Foundation is hosting a webinar covering “Nutrition and Immunity” on Thursday, April 13th at 7PM ET presented by Dr. Victoria Dimitriades Associate Clinical Professor of Pediatrics in the Division of Infectious Diseases Immunology and Allergy at the University of California, Davis. Register on the IDF PI Connect site, here: idfpiconnect.org