I’ve been having stomach pains since mid-March, so when I went for my yearly check up with the cardiologist I told him about the pain and he sent me to the gastroenterologist in his practice. I haven’t been to a gastro since I was a teenager, on purpose, so the referral was not a happy thing for me, especially when the cardiologist casually told me it was also time for a colonoscopy.
The new doctor was nice, though. And he actually listened to me, and read through my records, and even recommended a geneticist to figure out what type of Ehlers Danlos I have (in case it means that my tissues are too fragile for a colonoscopy, which would be a pretty cool escape). But he also sent me for a few ultrasounds, and even though I knew I should be happy that he was looking for answers, I was dreading the scans, especially the more invasive one. I want to feel better, magically, not go for more humiliating tests.
When I told my therapist about the latest medical drama, and my concurrent struggles with Intuitive Eating and trying to learn how to respect my body, she said, it must be hard to respect a body you can’t trust.
I’d never quite thought about my lack of trust in my body as coming from my health issues; I’ve thought of it more in terms of the childhood sexual abuse I experienced, and feeling like my body was always in danger and not a safe place to live. But my therapist was right: the way my symptoms come up intermittently, and don’t show up on traditional tests, has made it hard for me to develop a feeling of trust in my body as an adult.
But maybe the more apt question is: How can I respect a body that my doctors don’t trust? How can I ignore their doubts about my symptoms when they are the only path available for seeking help? The way doctors tend to focus on blood tests and scans, and ignore basic details of how the person is or is not functioning, is frustrating. They are supposed to be empiricists, and yet they ignore so much of the information that’s right in front of them.
I went for the invasive scans, despite my reluctance, telling myself that even if I don’t trust my body I still need to do whatever I can to heal it. And hours later I was able to check my virtual medical chart and see the results: mostly normal, but with areas obscured. It was already late on a Friday when I got the test results, so I couldn’t call the doctor’s office for more information, or to find out what to do next.
By the following Monday afternoon I still hadn’t heard from my doctor, but I put off calling, not wanting to be a burden, and not really wanting to hear what he might say. When I finally called, after a few more days of dragging my feet, his secretary said that she hadn’t received the results of the tests, and that’s why I hadn’t heard from the doctor; he would definitely have called by now if he’d received the results, she said. That was something of a relief. And she told me that she was going to reach out to the testing location to get the results and then call me right back. Except, I didn’t hear from her that day, or the next day, or the next. I probably should have called again right away, but I didn’t want to. I resented all of the work that had to go into getting only mildly useful healthcare.
I was finally able to speak to the doctor about two weeks after the ultra sounds had been done, after calling the office again and speaking to the secretary again, and the doctor told me that he wanted me to go for a Catscan this time, with contrast, in order to see whatever had been obscured on the ultrasounds.
I reluctantly made the appointment for the Catscan, and I also heard back from the geneticist’s office (for the Ehlers Danlos diagnosis) with a three page history questionnaire to fill out before my visit.
In the meantime, my nutritionist suggested trying a low FODMAP elimination diet, to see if that could reduce my belly pain. FODMAP stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides And Polyols, which are short-chain carbohydrates (sugars) that the small intestine absorbs poorly. She gave me a crazy list of foods to avoid for the next two to six weeks – like cashews and pistachios (but not walnuts or pecans) and mushrooms (but not oyster mushrooms) and cauliflower (but not broccoli). I could have tomatoes, but not prepared tomato sauce (because of the onions and garlic that are usually added), and I could have chickpeas and lentils and potatoes, but not kidney beans or barley or wheat. It’s totally non-intuitive; I could eat handfuls of table sugar on this diet, but not an apple.
I emptied most of the High FODMAP foods from the pantry and put them in boxes (like we do on Passover when, for religious reasons, we are supposed to avoid eating leavened foods), and I adapted our regular recipes to the best of my ability. But my mind was spinning.
The low FODMAP diet was originally designed for people with Irritable Bowel Syndrome (IBS) and/or Small Intestine Bacterial Overgrowth (SIBO), with the goal of figuring out which foods on the list, if any, are problematic for each individual sufferer. I didn’t have the right list of symptoms for either of those diagnoses, but I was desperate to feel better, so I agreed to go on the diet anyway.
And there was a lot of relief in being on a diet again; any diet, for any reason. It gave me the feeling that I was at least doing something to help myself, and that someone was watching over my shoulder to make sure I was doing it right. But the diet was hard, and even harder for Mom who had to go along with it for no good reason of her own, expect to support me; though she made a lot of “secret” trips to the Italian restaurant around the corner to make it bearable.
After three and a half weeks on the diet, though, my belly pain was worse, if anything. And the limited number of foods I could eat was bringing up my old food panic issues, and leading me to eat more of the allowed foods (like low-lactose cheeses and gluten free cookies).
My nutritionist had told me that people often lose weight on this diet – even though that’s not the purpose – but I’d actually gained weight. And it wasn’t over, because I still had to slowly reintroduce the high FODMAP foods, in case I had a reaction to any of them. Knowing that there would most likely be no relief going forward, despite the length of time it would take to carefully reintroduce each food, made me angry; but I’m such a good girl that I did it anyway.
Oh, and I met with the geneticist. She will be sending me a saliva testing kit so we can see if I actually have a connective tissue disorder (I was diagnosed with Ehlers Danlos on clinical examination in the past), but she said that the tests only catch about forty percent of cases, so, even if the test comes back negative, the chances are 60% likely to be wrong.
And the Catscan came back normal. So I’m at a loss. I was hoping that this summer of medical tests and diets and time off from teaching would re-energize me and allow me to start the new school year with more energy – but I’m still sick and tired, and we’re going back to masks and social distancing and possibly hybrid classes again in September.
I’m angry that nothing has worked, and that my pain doesn’t qualify as significant because it’s not caused by the right things. I’m angry that I can’t lose weight, and that I can’t stop blaming myself for it. I wanted to make progress with Intuitive Eating and respecting my body, and I wanted to have more energy to live my life the way I want to live it, and it’s just not happening.
Next up. The nutritionist and I are planning an anti-inflammatory diet, to see if, one, nutrition can actually reduce the inflammation in my body, and two, if reducing overall inflammation will reduce my pain and give me more energy. I’m not especially hopeful, but I have to keep trying.
The Jewish New Year (Rosh Hashanah) is coming up fast, and this is a time to make an accounting of the mistakes of the past year and start on a new path, so I’m not giving up yet. But I’m pissed off. Really, really pissed off.
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?