Wading through pages upon pages upon pages of scientific journal articles, web-based medical resources and treatises on effective treatment of double-seronegative myasthenia gravis today has left my brain numb and my eyeballs begging for mercy. There is so much to learn of the comparatively little that is actually known that it is no surprise that so many patients are intimidated by the prospect of digesting what they must read to become even a tad educated.
I’m luckier than many patients. Not only am I accustomed to reading volumes of material on many different health and science issues, I have a really caring, compassionate neuromuscular specialist who listens to his patients and actually discusses diagnoses and treatments with them on a level they can understand. He has not shown so much as the teensiest iota of arrogance during any of my interactions with him, a significant departure from many of the community docs who crossed my path in my 20 years working at the medical school.
So, the use of corticosteroids to treat myasthenia gravis, while effective at mitigating symptoms and bringing about remission in many patients, can also cause or exacerbate other conditions. In my case, we’re dealing with formerly very well-controlled Type II diabetes. Twelve years of normal A1Cs, fasting blood glucose measurements in the 75-95 mg/dL range, careful diet and pharmacological compliance are suddenly irrelevant as I register over 200 mg/dL fasting in the morning. I’ve become obsessed with checking levels throughout the day after taking the steroid medications, as though waiting for the other shoe to drop over 300 mg/dL, even as I’ve adjusted my dosages of oral diabetes medicines. I have to make myself wait now two hours after dinner to test again. And then before I go to bed, of course, I’ll be testing again, and if I awaken at 4am, I’ll test again.
Once my medical team and I figure out how to manage the diabetic issues, I’ll let go of that obsession, because, among other things, those damned test strips are NOT cheap. Now after years of sticking my pinkie finger, I’ve pretty much obliterated my fingerprint with scars from thousands of pin pricks to draw the blood for the test. I’ve moved on to the pad of my ring finger, but pretty soon, all that available real estate will have been rented, as well. I am resisting the idea of starting on insulin, but if it comes down to it, then I will have to figure out how to overcome my anxiety.
In the meantime, I contemplate going through all the cabinets and throwing out every crumb of food that doesn’t meet the diabetes diet guidelines. Like the Trader Joe’s Dark Chocolate Roasted Pistachio Toffee, and the big bag of dried mango strips, those tasty, albeit sawdusty, cookie wafers I found at Big Lots a while back, and the chocolate covered almonds from the nuthouse. And let us not overlook the cute little Penguin Party pasta with personality, the Heath Toffee bits in the ancient Choc full o’Nuts coffee tin (yeah, those little candy pebbles that make ordinary chocolate chip cookies into mouthwatering morsels of culinary delight), and the still nearly full jug of mango nectar in the refrigerator. These are all more than just a little lightly dusted with my mortal enemies, carbs.
What I can eat? Nothing with salt. That’s OK, I don’t cook with it or buy prepared foods. I don’t get much. I can have all the lettuce I can stand, just plain or mixed with cucumbers, celery and a dash of lemon juice and perhaps some flax seed if I want to get extra fancy. I can have salmon, sardines and kippers; a little chicken, but must avoid tuna (for the mercury, of course!). The list of what is acceptable is not nearly as long as the list of what tastes really good at any time of day. To avoid side effects with the steroids, I’m supposed to get plenty of calcium, but with an allergy to casein, the protein found in most dairy products is out of bounds. What does this leave? Hard cheeses. You know, Parmesan, Romano, Asiago. Well, they’re fine in Italian food, but they don’t do anything good for the Southeast Asian cuisine I prefer. The rest of the list is a bunch of stuff I wouldn’t touch with a barge pole, let alone a fork or spoon.
So there you have it, I admit to being a picky eater as well as a petulant patient. In the pursuit of feeling “normal” and keeping myself healthily alive, however, I may have to broaden my nutritional horizons.
If it’s not one thing, it’s something else. But please, spare the toffee!