Monday, February 29, 2016

Food, Chronic Illness, and the Principles of Non-attachment

Once again, I have been absent due to exhaustion, health issues, and the inability to put it all in prose form.  In addition to the ongoing struggle with autoimmune diseases (Hashimoto's and Lupus, in this case) I developed an additional malady that has made it difficult--sometimes impossible-- to eat.

I freaking love food.  I love to plan, to prepare, to consume.  It has always been, for me, a kind of everyday magic.  To take raw ingredients and turn them into something completely different, to move about the kitchen with love and intention, it's been one of my greatest joys since childhood.

I got my first copy of Joy of Cooking at the age of 10 and read it over and over again, as if it were a novel.  By the time I was 12, I was making homemade raviolis and baking bread and staying up all night to make croissants. My mom thought I was nuts.

I have loved to cook and eat for such a very long time.

Last July, I developed flu-like symptoms that simply never went away: stomach pain, nausea, vomiting, bloating, all pure misery.  I ate thin broth, jello.  Drank Gatorade.  I couldn't make it through my work day (something which was already difficult, due to terrible joint pain, tachycardia, shortness of breath and other symptoms from autoimmune conditions).

I called my (now former) GP's office after two weeks and was told over the phone it was the stomach flu.  I asked for an appointment and was scoffed at, told to just go to the ER if I felt so sick.  At this point, I was horribly dehydrated.  I went.  I was treated with IV fluids, given Zofran to stop the vomiting, told it was most likely gastroenteritis (again, stomach flu).  I went home, took Zofran, sipped weak green tea to stay hydrated.  The vomiting slowed down, but never really went away.  I was miserably nauseated every day.  But I went back to work.

At this point, my diet consisted of toast, broth, tea, Gatorade and applesauce.  I threw up once or twice a week, struggled to keep food down the rest of the time.  I talked to my Rheumatologist, worried it might be a reaction to immune suppressants.  We figured that high doses of NSAIDs and Prednisone might have caused an ulcer, so I stopped taking those.

I was a little better, but not much.

I found a new GP.  She was wonderful! A good listener, thoughtful, concerned. I was given a preliminary diagnosis of chronic gastritis, with a possible peptic ulcer, but told I needed tests to confirm. She added some GI meds and referred me to a Gastroenterologist.

Then comes, as always, more waiting and more tests: bloodwork, ultrasounds, endoscopy.

No celiac disease, no problems with my gallbladder, and surprisingly, no ulcer.

Chronic inflammation throughout my GI tract, yes.  But that doesn't fully explain why I can't eat.

Next, we do a gastric emptying study, to see if my stomach is working properly.

It's not.

So, we have an answer: Gastroparesis.  My stomach no longer works properly.  The nerves fail to contract, to grind the food and push it along from the stomach to the small intestine.  It just sits there, making me feel sick.

Very slowly, far more slowly than is normal, the food is digested, eventually.  If it's liquid, it will move along due purely to gravity.

As of today, I have lost 41 pounds due to this illness.

The damage to my stomach is likely due to my malfunctioning immune system, according to my Gastroenterologist.  It's chronic.  And hard to treat.

So, I've made some changes.  After two years of declining health I have to do things differently.

First, I have done some extensive research into diet and have gone through some hellish months of trail and error to figure out what works for me.  I am now managing the Gastroparesis with a highly modified diet, an anti-emetic, and some strong doses of reflux medicine.

I am working less hours.  In fact, I asked to cut my time in half.  This was a HARD decision.  I feel strongly about having a work ethic, about busting my ass to get things done and take care of my family.  But landing myself in the hospital isn't helping anyone.  So I let it go.

I let go of what I think my life is supposed to look like.  I am valuable whether I work forty hours a week or twenty.

I am struggling to let go of my attachment to how I look.  My weight is a nebulous thing.  I gained twenty pounds on steroid treatments and my face was so swollen I didn't look like me.  Now I am much, much thinner, and with that comes all these "compliments" on how great I look, but of course, it's just from being sick.  I can't control that, any more than the 40 pound weight loss from Gastroparesis.  It doesn't matter what I look will ebb and flow along with these chronic health conditions.

Letting go of my attachment to food has been difficult.  I still love to cook.  And, when it doesn't make me sick, I still love to eat.  I have eliminated a number of foods from my diet.  I eat frequent, mini-meals that are easy to digest: soup, yogurt, smoothies and juices.  I am grateful that there has been some improvement and I have been feeling a bit less nauseated.  I can enjoy small amounts of food in moderation, and I alternate between solid and liquid-based meals.  It seems to help.