Are You An FPIES Mama?

Recently I met a new FPIES mama, and talking with her about her overwhelming journey into the world of FPIES prompted me to start re-reading my own story from the beginning.

When I got to my post from September 4, 2012, I laughed out loud.

I’m amazed that I wrote something so spot-on so early in my FPIES journey; almost every word of this is still true even now, almost two years in to life with FPIES.

So I thought I’d recycle this post to share with my new readers who may not have seen this the first time around, and add a few new quiz questions, too!

Oh, and my disclaimer at the end is still true…but more of these apply to me now than did back in September 2012!

Enjoy a laugh!

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I started writing a post about what life as an FPIES Mama was like, with all the best intentions of helping people understand the stresses and challenges of our lives.

During editing, I realized I was depressing myself! It IS hard, but there is still joy in life!

Instead of being serious and depressing, I made up this handy-dandy little quiz that will help convey what FPIES living is like, while giving my fellow FPIES Mama’s a laugh (hopefully)!

ARE YOU AN FPIES MAMA?

(Answer “YES” or “NO”)

1. I have photographed my child’s poop.
2. I have scrutinized my child’s poop.
3. I have spent more than three hours of my life on the phone with manufacturers about ingredients in food, skin care, or cleaning products.
4. I give small children with cookies suspicious glares when they approach my child.
5. I avoid play dates like the plague.
6. I have bought kitchen utensils or appliances for the sole purpose of decreasing cross-contamination in my kitchen. OR
7. I have made my home a “trigger-free” zone where only safe foods are allowed.
8. My family has given up on having family dinners, and now eats in “shifts” so our FPIES child doesn’t feel left out.
9. I have learned at least three new ways to chop vegetables.
10. I now cook with ingredients that I didn’t know how to pronounce a year ago.
11. I now cook with ingredients that my husband thought were fictional foods in fantasy novels (i.e. Millet).
12. I now think it is normal to cook 2 or 3 full, separate meals at each mealtime.
13. I can’t really buy any food for my family at a regular grocery store any more.
14. My stack of medical bills is thicker than my child’s foot.
15. I know what a 504 plan is.
16. I have a 3 page, typed instruction guide to give to the babysitter. OR
17. I have decided that there is no one I can trust to keep my child alive, so I never EVER leave their side. Ever.
18. I have bailed on my family for holiday meals because my relatives either don’t understand, won’t accommodate, or flat-out undermine my children’s food restrictions.
19. I have bailed on birthday parties, pot-lucks at church, or other food oriented gatherings because it was ‘too dangerous’.
20. I will not be able to afford a vacation, fund my retirement, or build a savings account for the next 4 years (at least!), but…
21. I have traveled more than 200 miles to see a specialist for my child.
22. I have bought and enthusiastically extol the virtues of amber necklaces.
23. My first instinct when my child is sick is to check what essential oils I have in my cabinet.
24. I prefer to use garlic-infused olive oil when my child has an ear infection before going to the doctor for antibiotics.
25. I have bought a whole, grass-fed cow.
26. I have either planted, or seriously considered planting a garden.
27. I spend so much time in the kitchen I bought those cushiony floor mats for in front of my sink, counter and stove.
28. I have taught doctor’s about my child’s condition, and told them how to treat it.
29. I sweep or vacuum my dining room at least 5 times every day, because crumbs are evil!
30. I’ve installed a lock on my refrigerator and pantry doors.
31. Any time we leave the house, I have to pack full meals and snacks for every member of the family.
32. I’ve forgotten what fast food tastes like.
33. I’ve resisted the urge to slap someone who told me “Oh, a little bit won’t hurt him!”.
34. I know what a T-cell is.
35. I checked out a High School Biology textbook from the library to brush up on my knowledge of the gastrointestinal system.
36. I’ve lost more than 20 pounds on an elimination diet so I could keep nursing my child.
37. I’ve memorized the ‘mystery phrases’ manufacturers use in their product labeling.
38. I know where all the local farmer’s markets are, and have become friends with a few of the farmers.
39. I called my Grandma up to have her teach me how to preserve food for year round use since my child can only eat organic, un-processed fruits and vegetables.
40. I can now speak “medical”.
41. I have taught doctors about FPIES, and how to properly treat and maintain it.
42. I consider it odd that people don’t “interview” doctors before becoming their patients, now.
43. I keep a bag packed for myself and my child for the hospital at all times, that includes copies of their medical records.
44. I hardly ever see or speak to my friends anymore, but ‘chat’ with other FPIES Mama’s on message boards every single day.
45. There’s an election this year? Sorry, I’m too busy taking care of my family to have noticed.
46. There’s no old wive’s tale, herbal remedy, or alternative therapy out there that I won’t at least consider for a moment for my child (even if I eventually discount it).
47. I would go to hell and back – and sometimes think I already have – to get my child the proper medical care.
48. I spend more time in prayer to my God than I ever did before.
49. Some days I just want to cry, but then I see my baby smile and giggle and I somehow find the strength to put on my big girl panties and keep going.

If you answered “YES” to more than…oh, geez – you FPIES Mama’s know who you are! If you answered “NO” to most of these, then you aren’t – but please be nice to the Mama’s that are. They need your friendship and support very much.

Why don’t you offer to come do their laundry one day? They’ll love you for it!

Disclaimer: Not all of these conditions apply to me!

Do you have any quiz questions to add?