Kimberly Hirsh

My sense of routine and timing and goal-setting has been completely exploded over the past month or so. The routines I put in place to help me cope in the face of my mom’s illness weren’t really doable last week because M was home from school Wednesday through Friday for a teacher workday and conferences. Just today am I beginning to claw some of that structure back.

Today I did morning pages. I did a tarot reading for Pisces season. (The overall gist was one of recognizing abundance, not worrying where it would come from, and letting go of the need to try to create a perfect balance.) I had a smoothie. I filled one of my three medicine cases. (Two more to go!)

I cleared several small items off my to-do list. Soon, I will get down to work-work, continuing to analyze the documentation that’s going to help us develop a typology of the challenges library staff face when implementing connected learning.

I’ve had headaches almost continuously for a few weeks, partly due to hormone shifts, but maybe also partly due to stress. I had two cycles where I thought my body had sorted out my PCOS a little bit but here we are on Day 44, no new cycle in sight (a normal menstrual cycle is 40 or fewer days long from the beginning of one period to the beginning of the next). This is fine, or rather, not catastrophic. But disappointing.

I spoke with my doctor the other day. My Hemoglobin A1C is high - that’s the number that says how my blood sugar has been over the course of the past few months, as opposed to the glucose measurement that really only tells you about the past 24 hours or so. (That one was high-normal.) My LDL cholesterol was high, too - but total and triglycerides were good, so let’s celebrate that!

My doctor recommended two new supplements and I asked about a third. One of the ones she recommended was corn silk for kidney function. When I eat things with whole corn, corn flour, or corn meal in them, I get joint pain. I’m going to try the corn silk and see how it goes, but am prepared to stop it quickly if it causes pain and ask her for other possibilities.

She also recommended berberine for cholesterol and blood sugar, and agreed with me that it would be good to try GABA to improve the quality of my sleep. And she said it was smart of me to up my l-tyrosine when I noticed clinical signs of declining thyroid function (increased fatigue and decreased body temperature).

I write about these things because my life is a constant set of calculations relating to how to handle different conditions and the fact that my health will never be “fixed.” Chronic illness is not a problem to be solved; it is a condition to be managed.

I bought this Art Oracles card deck at the North Carolina Museum of Art when we were there to see the Mucha exhibit in December and I keep the Frida Kahlo card pinned on my corkboard because it says, “Convalescence lasts a lifetime” and that is something I need to keep in mind.

I don’t expect I’ll ever get a tattoo, but inspired by both my own experiences with chronic illness and having recently read Ninth House, if I ever did, I think it would be the tarot Wheel of Fortune, and probably the Wayhome Tarot version.

(That picture is from the Everyday Magic website.)

The thing is, wherever you are on the Wheel, three things are true:

1. At some point, things will be better than they are now.
2. At some point, things will be worse than they are now.
3. You will be back here again.

It would be good for me to keep these truths in mind at all times.

In October, I learned that for the first time since my diagnosis in 2011, I had actually gotten my thyroid hormone levels to what I consider optimal. Exciting, right? Then I went over three months without brain fog, and it was incredible.

Sunday, my throat started to hurt a bit - a classic hypothyroidism symptom (I know it’s also a COVID symptom, but this sore throat comes and goes in a matter of hours; I’ve taken care all week to be masked and outdoors whenever I’m away from home as I couldn’t book a test before my isolation period would be up anyway) - and I took my temperature to see if I had a fever and my temperature was the lowest it had been since October - I had been hovering around 98.2 which is actually warm for me, approaching a normal person’s body temperature - and I was getting 97.7 (classic mediocre thyroid for me) and even 97.5 (bad sign, y’all). I was feeling a little more fatigued than before and then I realized that the weather has turned pretty cold for here, and remembered that cold weather can impact thyroid function.

Then this morning, I woke up with brain fog.

I have a dream job right now, and one of the things that makes it a dream job is that it involves reading and synthesizing a lot of information.

But these are really hard tasks with brain fog.

So I decided rather than to try to push through the brain fog, I would work with it, largely due to a timely newsletter from Katy Peplin about “dressing” for the brain weather you have.

Here are the things I did today to try and work with this brain fog:

Gave the day a soft reset. After breakfast and a cup of coffee, I went to bed and closed my eyes and listened to an episode of 30 Rock. This gave me a bit of clarity.

Blogged through it. So then I got up and to get my head in the game for work, I wrote the last blog post of my Connected Learning series. But then I was worn out.

Had a snack and read some fiction. Specifically, The Language of Thorns.

Went back to bed, again. I set an alarm to make sure I wouldn’t be down for more than 40 minutes (20 minutes to fall asleep + 20 minutes to actually sleep). This time, I got up and actually felt like I could do stuff.

Had lunch. I always am energized after a meal.

Figured out what work I could actually accomplish in this haze. At first, I thought I didn’t have anything I could get done without intense mental effort. Then I realized that in some notes I made yesterday, I had said, “We might want to make a checklist…” Making a checklist and populating it is definitely something I could do, so that’s what I focused on.

What’s next? Well, because I didn’t want to be indoors around strangers when I had a sore throat, I rescheduled some appointments I had this week for 2 weeks from now, which means I won’t be able to talk to my doctor about this feeling for a couple weeks. But I also don’t want to live through the next two weeks in a fog. So I’m going to up the amount of l-tyrosine I’m taking. I wouldn’t do this except that it is the thing I did most recently that got my thyroid hormone levels to that optimal place and it’s easy to go back down. This is an amino acid that a person with hypothyroidism should definitely talk to their doctor about using. If I start to get palpitations, I’ll go back down. But my hope is this will clear the fog.

It’s hard to figure out exactly which of the many symptoms I have should determine when I got sick but based on the impact of treatment, I’m going to say it was the onset of anxiety and depression. These really ramped up in October 1999.

I was 18 and settling in at college. I had a roommate who was not a good fit. My anxiety and depression seemed to kick off when that roommate suggested at dinner that I had a crush on a dude in our building. I didn’t but I liked talking to him. I thought he was fun. I already had a boyfriend (spoiler alert, 10 years later I married that boyfriend) and I thought that, based on what my roommate said, thinking this kid was fun was basically cheating. (I was wrong. It’s okay to have friends.)

This one conversation launched a spiral of negative self-talk that persisted for months. It was exacerbated by my being at a big university, struggling to make friends, and feeling disconnected from my family even though I was only 12 miles from home.

At the same time, my brother was sick and in the hospital. He was only 5. I don’t remember, but I imagine I felt that going to my parents with my problems felt like adding a burden they didn’t need, in light of my brother being ill

I don’t think I got help until Spring of 2000.

In the following few years I gained a lot of weight, was so sleepy that I would fall asleep in the student union and miss class plus slept through service learning obligations, and started having irregular periods. My primary care doctor sent me to an endocrinologist who ran a lot of thyroid tests but not the one that would lead to my diagnosis 11 years later.

In time, a lot of these symptoms went away, but they recurred with a vengeance the summer after I finished library school in 3011. Again, it started with depression and anxiety - in spite of my being on an antidepressant - and by the time I did a direct-to-consumer test and took the results to my doctor, all I could do was go to work, come home, and sleep, without energy even for laundry or food prep.

Wentz conducted a survey of over 2000 of her readers to investigate what was going on when they got sick. Stress was the most frequent response. I think both of the times I’ve had big flare-ups have been in the face of the stress of a major life transition.

This connection between transitions and flares is why I’m being especially vigilant right now as I continue to live in the liminal space of post-PhD.

Hashimoto’s makes me feel like the opposite of myself. At various points in my life, if you asked friends about me they’d tell you that I have infectious enthusiasm, that I am an excellent writer, that I am a badass who gets shit done. (These are things friends have actually told me about myself.)

When I’m having a flare, I don’t seem to care about anything. I can’t find the right words or structure my thoughts into a logical flow. I don’t seem to be able to get anything done at all.

I’ve seen my mom go through this, too. She’s super smart, loves learning, and is amazing at making stuff. But on her worst days, it’s all she can do to get out of bed.

It’s hard for me to reconcile these two versions of myself. On bad days, I find it hard to believe I was ever enthusiastic, sharp, eloquent, or effective.

I don’t like feeling this way.

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One of the things I’m focusing on right now is feeling better. Today, that means reading Izabella Wentz’s Hashimoto’s Protocol: A 90-Day Plan for Reversing Thyroid Symptoms and Getting Your Life Back. We’re coming up on the 10th anniversary of my Hashimoto’s diagnosis (driven by my own research, in partnership with a doctor I had to push to recognize it) and guess what? I still feel crappy. Not nearly as bad as 10 years ago, but still bad. And part of chronic illness is that there will be flare ups. But I know I’m capable of feeling better because I did, in the 9 months before I got pregnant. But the things that helped me then aren’t enough to help me now, it seems. So, Wentz’s book.

Wentz suggests keeping a health journal using “a method you are likely to stick to.” For me, that’s blogging. I’ll probably keep some private notes, but maybe this can even be helpful to somebody else to follow along. So to the extent I feel okay doing it, I’ll be keeping my journal here, in the Health category.

Wentz suggests beginning by identifying health goals. Here are mine:

I want to have more energy. I am tired, all the time. My kid will tell you. I’ve been the kid with the tired mom and I’d love to spare my kid that. So this is my highest priority. Right now, if I go on an outing with my kid, I have to take the rest of the day and potentially the next day to recover. So my energy goal is to be able to go on a family outing and stay in the swing of things the next day.

I want to feel better about my looks. Mostly I think I’m pretty cute, but sometimes I feel dull and puffy. I’d like to look in the mirror and be not dull and not puffy. I’m not going to worry about weight or even girth because those are tricky targets and easy to disappoint me. But I’d like to look in the mirror and see someone with normal bags under her eyes, not extreme ones, with pink and cheery skin rather than wan white skin, with more hair than I have now and with an appropriate amount of white hair for her age. (There is a clear distinction between the amount of white hair I have when I’m well and when I’m ill. I don’t want to eliminate it, just to have what seems like a reasonable amount of it. And then maybe dye it green.)

I want to have endurance when swimming. One pool length wears me out right now and I can’t at present exercise myself into improving that due to the relationship between thyroid hormone levels and respiratory function. But I want to be able to swim in a mermaid tail for long distances. My ultimate goal is 300 yards but I’ll set an intermediate one for now. By next July, I’d like to be able to do 2 full laps with only 12 breath rests.

Those seem big enough for now.