Riding my own coat tails

Pregnancy was hard on me for gender and pregnancy reasons. Then Locke came 2 months early, and then Reed suffered from something like Postpartum Depression for 18 months. Life was really hard for a long time. But I did the hard therapy work and thought I was past all of it. Locke was consistently sleeping through the night and so was I. But I wasn’t coming out of the brain fog. I worried it was because of substance love affairs I’ve had in the past. Every doctor I talked to told me that wouldn’t have lasting, increasing effects. Was it because I had long covid? The timeline of symptoms starting didn’t match up. But work and home were both being impacted to significant degrees (once the subject was finally broached), and things seemed to be getting worse.

It took a long time for any of this to even come up. I’ve been performing at a high enough level in nearly all parts of my life that most people don’t monitor what I’m doing, and if I do mess up they usually think I have deep thinking behind it at most, and that it’s a small glitch if it is a mistake. But my new manager at work was paying enough attention to notice, and when I brought it up with Reed he was eventually (after being super supportive) like “just so you have all the data.. it’s not just at work.” He had been concerned about early onset dementia, I was being so forgetful and unobservant!

During all that time, I was mostly masking by having good practices in place that were documented and that I could follow even in my reduced state. I have excellent people in my life who were willing and able to support me even through a hard time because I had invested in our relationships when I did have capacity. And so while it took awhile for all this to come to light, and months to diagnose what was happening, I was able to maintain good practices in the meantime. I’ve been riding Past Willow’s coat tails to recover enough for Future Willow to be well again. Thanks, Past Willow!

So here we are with another “here’s how I navigated all this” to help me document my own stuff as a gift to my Future Self and also to others who might need to deal with similar things.

Write down what’s been happening

1. Current status: What my concerns are, with concrete examples of them happening.
1. Current working theories: All the things that have come up that it might be. For me, this included things like ADHD, long covid, etc. Each row’s theory had columns for why it was plausible and what was the next step for it.
2. Things it is not: All the things it had been figured out it wasn’t, along with when and how we figured that out. Includes things like menopause and early onset dementia.
3. All current medications and supplements: Long list of what I take regularly, along with the desired impact, how long I had been on it, and who manages it.
2. Timeline
1. Things going normal: What “normal” looks like for me, examples of things going ok in that timeline, highlights in the timeline about school, work, life, etc.
2. Things start to feel “off”: What hard times were looking like, and how I was responding. Highlights of when things were going poorly and when they got back on the rails.
3. Things start to feel particularly “bad” sometime in here: Highlights of a continuing decline alongside other things going well again.
3. Other things that have changed: General insights for shifts in life such as traveling and dating less.
4. Things that have not changed: Call out what I’ve been consistent about, including sleep hygiene.
5. Journal: Incidents of forgetfulness, zoning out, etc to log if I’m still doing poorly or getting back on track.
6. Data: As y’all know from my yearly reviews, I love data. I shared a lot of that data with my care team.

This also helped me advocate for myself. Would there be interactions between these different possibilities? What was I missing? As Reed told me early in this process, “the medical system would really just prefer that you die quietly in a corner.” Anytime someone wanted to hot-potato me away from why it wasn’t their department, I insisted on data as to why it was the case and what interactions might still exist between their domain and others’.

Ask for guidance, follow the data

I reached out to my old psychiatrist to ask for referrals, or if we should start practicing together again. “Probably mold,” she told me, and referred me to this person. Even the world “holistic” rubbed me the wrong way in a medical approach, but if Cara was into it I’d give it a shot. 3 rounds of bloodwork (12 vials first round, then 15, then 2) and some environmental testing later, and the results were back: it was a toxic mold in our house. We got ready to remediate the house. But we did another mold test to be sure, and that one came back negative. The hunt was still on. I did neurology screenings and tested for other toxins in the household. Nothing came up. It wasn’t an interaction between anything in my medication and supplement routine.

Then finally some things started to come back positive. A 7.5 hour neuropsychology evaluation (done all in one arduous day to wear me out and show fatigue) showed high intelligence but mid range working memory. Anything more than a standard deviation of difference is considered an impairment/disability, and I had three SDs. AND I had a super low auditory processing score. So my thinking was that I’d always been able to mask the auditory issues with intelligence, but then something had messed up my working memory and it had brought the auditory issues to the fore.

And then the MRI came back. A 6.2mm lesion in my brain. A normal occurrence for someone in their 70s, not so much for someone in their 40s. We’re scanning again at the end of June to see if it’s growing or getting friends. We already scanned my spine and I’m clear there.

Dealing with ambiguity

Depression has been a core part of this experience. Whether it’s part of the underlying issue, or is a reaction to having something I value so much compromised, it’s been ever present. I began to doubt if I had even been interesting, or merely surrounded by kind people who were looking out for me. Both have of course been true, but brain weasels sure can be a doozy. KAP also stopped working so much for me in this time — whether because of what is going on with my brain, or the changed supplement routine, or it’s just run its course — and I worry about that. It’s been so good at helping me manage my anxiety, but maybe also it’s done what it’s going to do for me and I should spend that 3 hours a week on other things.

Quinn has been really steady in all this, and I appreciate her a bunch. She’s forced me to consider what life would look like if this IS the new norm. Could I be comfortable with that? Now the challenge is, because we’re figuring out what is happening, to deal with the work involved in improving, and allowing myself to improve, and accepting whatever level I end up at after I put in the work.

Do the work

The good news is that 12-15 weeks of cognitive therapy for both working memory and auditory processing should get me into a really good place, so long as other things don’t shift too much more. These activities are so dull and frustrating. At first they were fun puzzles, but now it’s just listening to 7 digits in a row and then repeating them backwards. Or repeating a series of dots in a 4×4 grid in the same order they were given. It’s like physical therapy — boring, tedious, and it works. So I do that 3x/week, once with a therapist and twice on my own.

And it’s working! I now notice when I’m forgetting something, and sometimes remember parts of it even if I’m not certain. I’m able to help Reed problem solve around the house. I’m so grateful to the medical profession for putting in all the research to make this improvement possible; and I’m so grateful to my workplace for supporting this time off for me to recover.