Health & Hard Truths: A March Update

Happy birthday to me!

I was showered with love and care on my birthday, which was such a treat, and I'm so grateful. Unfortunately, I mostly have less fun news to update you on today.

Bao Birthday! 2025

In March, in addition to working with my existing care team to address my POTS and pain getting more severe (no relief to date), I also met with a new chronic pain specialist to address central sensitization, which is when the nervous system becomes overly sensitive to pain and stimuli because it's been through so much of it. 🆒🆒🆒

I also met with a new gastroenterologist to address a possible autoimmune inflammatory condition in my esophagus. I've been instructed not to sing until we can get it biopsied, which, if you know me, you know is a tough ask. I caught myself singing while I made the blog cover. It's so automatic!

My mom and Momo (mother's mother) were both lovely singers who grieved losing their singing voices—my mom due to hearing loss, sound distortion, and facial paralysis; Momo after a botched surgery. Well, the surgery was incredible and saved her life. But the vocal cord injury didn't have to happen. I told Momo about my situation and how I feel her and Mom with me through this process. Hopefully I still have many years of singing ahead of me.

There are some abilities I've lost, and I have to accept that they're lost. I'm going to fight for my voice.

Bringing this back from 2 birthdays ago because it's still adorable.

In the meantime, I have about 2.5 months of living expenses covered, and I am officially panicking with no idea where to go or what to do after that. Brace yourselves for me to get asky again.

There are a few expenses important to my functioning that I'll start with now.

• $80/month – a medication insurance won't pay for because it's off-label

• $200/month – saline infusions

• $150/month – cleaning service

• $60/week – minimum hours of caregiver support (this covers the lowest number of hours I can hire them for, which is mostly adequate)

If you can sponsor any of these costs, one-time or ongoing, please contact me to set it up.

Oh, also, Tyrone and I both had urgent care needs in March. Things have been dramatic and tiring, but we're okay. (He's actually perfect. 😇)

Thanks for checking in with me. Hope to hear from you soon. Let me know what's going on in your world, and Happy Birthday to the other spring babies!

Love,

Sarah