Saturday, April 29, 2017

What's Next?

It's been 6 months of illness, 3 months since the final, definitive diagnosis. Inflammatory bowel disease~ ulcerative colitis/proctitis. A whole foods chef's worst nightmare and an ultimate cruel irony.

I made my first loaf of 100% whole wheat bread in 1969. While it was as hard and heavy as a brick, it was a start of my love affair with whole 'natural' foods and cooking. I subscribed to Organic Gardening Magazine and dug up behind the garage of my childhood home to grow vegetables. My father had a fit, but my mother was very supportive, and our garden flourished long after I left home with my father taking it over.
Wherever I lived I grew vegetables and herbs, even if they were just in pots on the patio. I was a frequenter of farmer's markets and taught myself how to make everything from scratch. In those years before the internet, I amassed a collection of over 300 cookbook.
Earning my living as a chef was a natural outgrowth of those years. I love to cook and bake, love to entertain friends and family, love my business of private cooking for wonderful clients. This, for the past 50 years has been my life; it is not just what I do, it is who I am.

Now I am faced with a chronic incurable disease that I have yet to get a handle on, which leaves me with  significant pain, general malaise, fatigue and, no appetite. Every day I wake up and hope that I will feel better. I can not yet retire, I must work, and yet I get  little pleasure from it anymore. I am under the care of a gastroenterologist who assures me that people can go into remission with this disease, but I have yet to achieve that goal: although the worst of the symptoms have resolved I am still left feeling miserable. The medication is ridiculously expensive, they have supplied me with 6 months of samples to start, but past that I do not know how I will pay for them.

Then there is the 'low-residue diet' to which I must adhere. It is the polar opposite of the way I have been eating since I was 10. No whole grains, nuts, or seeds, no raw vegetables, no cooked cruciforous vegetables ,broccoli, cauliflower, cabbage, brussels sprouts, cooked fruit only, no berries,  all my favorites....think wonder bread, white rice, veggies cooked to death, white potatoes, white pasta, nothing spicy or highly seasoned, no hard cheese....let's just say all of the foods I love to cook and eat are off the list. Even if I reach remission, I have to be very careful of what I do eat to stave off a 'flare-up'. The disease can flare even while in total compliance with diet and medication. Stress may be a factor, or not. Diet may be a factor, or not. There are no absolutes here, other than once you are diagnosed with this misery, you have it forever. No one knows what causes it or how to cure it.

Coming to an accommodation with this disease has proven more than I can handle although I am trying, hard. There is a grieving process that must be allowed, a lot of anger and feelings that my body has betrayed me in the worst way, and also the nagging question of haven't I had to deal with enough in my life? How do I support myself when all I want to do is lie down? How do the bills get paid? Will I ever feel better? Questions no one can answer. Time is my ally and my enemy. Maybe given enough, I will get better, but meanwhile it passes ever so painfully slow.