I’m still on hiatus from social media activity and comments on my blog posts are still closing after only 1 day. But there are some things that I want to capture in this space immediately, rather than waiting until I “come back,” and there are some things that I think could benefit other people by being public, so I’m going ahead and posting. This is one of those things.
I went to the doctor yesterday. I needed refills on my prescriptions. And I’d also noticed recently that a number of chronic illness symptoms had crept up on me slowly over the past… year and a half? Six months, at least. So I went in expecting to discuss those symptoms with her.
When she asked how I was, I gave her the list of symptoms:
- Puffy face
- Missing outer third of eyebrow
- Low body temperature
- Intense fatigue (can’t put away laundry or cook)
- Brain fog (Only about 2 good hours a day)
- Joint and muscle pain
- Coarse hair
- Hair loss
- Carpal tunnel
- Worsening vision
- Dry skin
- Brittle nails
- Frequent urination
- Excessive thirst
- Sore throat
- Waking with a racing heart
“Your thyroid numbers are good,” she told me. I looked at them. She was right. They weren’t just normal; they were in what I know to be the optimal range for me. They were excellent.
I’d noticed that a lot of these symptoms were also consistent with diabetes. “Your blood sugar is at the high end of normal, but it’s lower than it was six months ago. It’s moving in the right direction.” So I’m still prediabetic. But not yet diabetic.
This is where most doctors would tell me I was fine, or I need to eat more protein, or it’s because I’m the mom of a young kid.
“But you’re having these symptoms, so you’re not okay,” she said. I love my doctor. “Have you noticed any pattern?”
I told her no. They have snuck up on me, sort of one at a time over months and months, and so I haven’t been tracking them.
“Well, they could be a food sensitivity. Or another autoimmune disease.” There’s a high level of comorbidity with autoimmune diseases, such that having one makes you a lot more likely to later acquire another. “But I don’t even know what to test without more information. So come back in two to four weeks with some data and we’ll decide what to test.”
I really wanted to be able to just increase the dose of one of my current medications to fix this, but apparently, that’s not an option. Straightforward dietary changes that have helped in the past, like cutting out gluten and corn, which I’d been doing for the past two months, didn’t seem to be helping. So here we are. I’m spending the next month collecting data on everything I can think of, looking for relationships. I’m tracking which symptoms I have on what days, what I eat, how I sleep, and anything else that comes to mind; the app I’m using, Flaredown, lets you add tags freely so I can track things like travel and even whether my kid naps.
Esmé Weijun Wang, who writes a blog for ambitious people dealing with limitations, writes:
My work, although it may not look like work to most, is to take care of myself. I must care for my health with as much attention as I once paid to the documents I was hired to edit, or to the long hours spent at the office on Saturdays. Aggressive pursuit of one’s ambition is a skillset that, I hope, has not left me. In the meantime, I am aggressively pursuing a dream of recovery.Similarly, I’m going to collect data on my own health with the attention I would use to collect data for a study, to analyze my own journal with the same tools I would use to conduct content analysis.
I don’t have a pat conclusion to this. I’m disappointed it’s not a straightforward fix. I’m optimistic that we’ll be able to work something out to help me. I’m relieved that I don’t need to make any drastic changes to my diet before I’m done traveling at the end of the month.
And I’m tired. I’m very tired.
I thought to myself yesterday, “I can’t believe that I’ve got another fifty or sixty years in this meat cage, dealing with these flare ups.” But I do. I will. And I’ll get through it, with the support of my family and friends and science.