Post 1000: y’all, I need some help

Lily is having a hard time with seizures, and now that I’m living so nearby, I’m becoming a little obsessed with finding answers. You know I’m a scientist. I know how to find and read research papers. I am not finding what I need on PubMed, though…yet. I am also feeling mild withdrawal from my favorite databases, as this is the first semester that I haven’t been working for a place that got me that access since I started college.

The help I want: guidance with primary/review papers – firsthand accounts from people with epilepsy who have used hormonal birth control at the same time – firsthand accounts from people who have epilepsy that affects sensation and muscular spasm in their faces/mouths. Maybe also people with epilepsy who can tell me about sensations that make it difficult/impossible to tolerate the sensation of wearing a shirt.

Let’s get to the details. Lily is on Depo shots, and spotting most of the time. We don’t have good data on the seizure intensity correlating with the spotting/flow intensity, but I am increasingly convinced we’d find it if I got the staff to record the spotting. Her teachers told us that most of their female students with epilepsy started having problems when they hit puberty; one of the main reasons I distrust Lily’s neuro is that he didn’t believe this, even when I sent a clipping with my parents from the NY Times‘ science page. But there’s definitely work out there on catamenial epilepsy.

The ketogenic diet seems to have gotten her to only having seizures between 5pm and 9pm (mostly 6-7, with some variation). We fear that her 9pm meds get her through the night okay because her body slows down, but her 9am meds aren’t lasting because her body revs up. If this theory is at all plausible, it overlaps the possibility of the menstruation-related metabolic shifts that seem to be a known thing.

I want her off Depo. I’m on Seasonique, successfully, so I know there are options. I want that to be the answer – to settle down the metabolic waves, in hopes that the keto diet plus meds then prevents the use of rescue meds. It’s so great that there are fewer seizures – but the ones that happen are incredibly disruptive and really, really different (facial, possibly involving respiration, probably involving tingling skin, probably causing anxiety or panic).

Do you have advice on either how to help communicate this to her neuro, or how to find readings on PubMed? Or just tell me it’ll be okay…

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Convergence

It’s been a little while since I posted because I have been tired, tired, tired. Typing hurt my hands. My computer monitor hurt my eyes. My chair hurt my lower body. Depression took over, and I didn’t notice, until it was too late and I was miserable.

The depression is still lurking now, although I have adjusted some things to reduce my pain. However, there is legitimate grief and sorrow behind it. I’m worried about my sister, who’s been going through a lot recently, even as she has been happy. I am grieving for the life I had before my diagnosis, which will never come back, even if my symptoms go into remission long-term. It’s a long fight ahead of me to regain the muscle tone I lost during my recent illnesses and the lack of exercise due to joint pain, let alone navigate my career prospects in science. And then there’s that nasty internalized ableism to fight…but that’s the subject of a post that’s coming up soon.

Amidst everything, then, this is a thought I’ve had recently:

My sister is now more like me – she’s experiencing the rollercoaster of puberty. I am now more like my sister – I’m experiencing the frustrations of my body hurting and changing without my desire.

When she first moved into her own apartment, I didn’t call her very often. Lily and I, frankly, are very good at irritating each other, as so many siblings are! I was finishing my dissertation, and very stressed. I always know that I love her, and I often fiercely defended her or spoke highly of her, but I have had a period of time during which I just didn’t want to be around her very much.

In the last couple of months, though, I’ve been calling her much more frequently – at least once a week. I feel closer to her now than I have in a long time. It’s one of the best things about my current identity/medical crisis. Maybe we’re finally getting to know each other as grown-ups…