Erin Rackham

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Erin Rackham Erin Rackham, PhD

10/01/2026

This is one way I manage my autistic interoception issues when I’m struggling to identify my body’s needs. ❤️‍🩹

Using the 🍃 to *force* my body to accept food—even when I’m overstimulated—has been necessary ever since getting long COVID. 🤷🏼‍♀️

10/01/2026

I hope I’m doing right by humanity by sharing my experiences so openly like this. 🥺 I just know what’s happening right now in our mental health care system isn’t working for ppl like me, & I have more privilege than most. Hopefully I can dial this in eventually and use it to help others!🙏🏻 Not to mention our PDA kids. 💔

09/30/2026

This doesn’t even feel real to me yet, but I’ve never been happier to see the ocean. 🥹 I genuinely didn’t think I’d ever make it back here, & now I’m here with my kids and I’m not even fully crashed from the travel (yet🤞🏻)!

Shoutout to my husband for handling the mental, emotional, & physical load of this entire trip for us! Definitely wouldn’t be possible without all of his hard work to make it accessible! ❤️

09/27/2026

Week 7–Ketotifen for MCAS (.5 mg 2x/day).

Ketotifen continues to feel like a miracle for me! My muscles are recovering after light exertion, my hair isn’t falling out as fast, & my sensory tolerance is almost normal at this point. 🤯

I’m curious to know if a higher dose could help even more, but nervous to increase because I know it’ll sedate me again until it stabilizes, so I’m holding off for now!

09/26/2026

Month 1–Valtrex (& Celebrex) for Long COVID.

Valtrex still significantly helps my nerve pain & fatigue, while I think Celebrex makes it feel easier to do light exercise. 😳

09/24/2026

2 Weeks off Valtrex (Valacyclovir) for Long COVID! (500 mg, 2x/day)

I still have slightly less energy than when I was on the Valtrex, but nothing extreme. My nerve pain still feels fine, thankfully, and I think it did raise my overall baseline a bit. 🤷🏼‍♀️

If my doc wants me to try another month or 2 of the Valtrex, I’ll do it and ask for Celebrex as well this time!

09/24/2026

1 Month–Guanfacine for hyperadrenergic POTS (.5 mg IR 2x/day).

Doubling my dose last week sedated me for a few days, but leveled out quickly & I’m ready to try the 1 mg Extended Release now to see if it’s smoother. 🤞🏻

The effects have been great so far—heart rate is way lower on exertion, rarely going into fight/flight, & executive functioning slightly improved!

09/21/2026
09/20/2026

I will be forever grateful for the few people who refused to disappear when I pushed everyone else away because I suddenly felt so deeply unsafe when Long COVID broke me. ❤️‍🩹

I’d never been in such a severe mental & physical health crisis all at once, and it hurt to watch lifelong friends get angry at me for my survival behaviors, but I believe the few who were able to see through them & stay safe for me genuinely saved my life. ❤️

Thankfully my relationships are a little more reciprocal now with my increased capacity, but I wanted to be clear that I attribute a lot of my Long COVID improvements to my support system allowing me the space to fully fall apart and drop all masks and walls when I couldn’t hold it together anymore. ❤️‍🩹

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