I look pretty good these days – or at least that’s what everyone says when they see me. I have put back on the lost weight and mostly look well rested. I manage to work, pick up kids after school, attend parenting events, and even to go out the occasional evening. For all appearances, I am essentially back to normal.
To maintain this illusion, I do the following:
- Smile, laugh, and make light whenever possible.
- Maintain a depressingly restrictive diet.*
- Take 30+ pills a day in prescriptions and supplements.
- Take pain medications daily including Lyrica (an anti-convulsant), vicodin, and cannabis.
- Take antidepressants and anti-anxiety medications.
- Exercise daily – bicycling, pilates, and/or running.
- See regularly: therapist, psychiatrist, gastroenterologist, chiropractor, acupuncturist, massage therapist, a naturopath, a podiatrist, and a osteopathic pain specialist.
- Wear a heating pad around my midsection from afternoon through the night.
- Sleep 8-9 hours a night.
When someone asks how I am and comments that I look so much better, I often hesitate. I am better than I was when I was not able to digest anything, but I am nowhere near where I was two years ago. My typical response is that I’m doing better.
I do not want to be a person who whines about their ailments. I am fortunate that I can maintain some degree of normalcy, hopefully for multiple years if I keep the pancreatic inflammation under control. Still, sometimes I wish I could respond honestly: I’m exhausted, I’m bewildered, I’m depressed, I’m scared, I’m alone in my quest to figure out what is wrong with my body, and all I want in the entire world is to go back to being vaguely normal with the regular aches and pains and ups and downs and a lifespan with decades more to come.
* I cannot eat any grains, dairy, soy, legumes, nightshade vegetables (potatoes, tomatoes, peppers), most things derived from seeds (including coffee and many spices). I have to carefully control my protein, fat and type of carbohydrates. I cannot eat vegetables unless they are cooked. Above all else, I cannot have any alcohol. I eat a lot of vegetable and chicken soups that my darling husband makes, roasted root vegetables, spinach, eggs, smoothies, certain protein bars, and meringues. My indulgences are meringues and coconut.