Despite having a treatable infection, after 62 appointments and emergency room visits, Nicolle resigned to hospice in hopes of getting relief from her tortuous pain. I cried for hours when I realized how close she was to death with no options. Since March, Nicolle has become my irreplaceable best friend who texts me good morning and goodnight every damn day. She is my biggest fan and helps me in every way. I didn’t know what to do, so I wrote:
A MCAS friend
A MCAS friend checks on you more than anyone else, because they know every hour is a new challenge.
A MCAS friend knows which medications you tolerate and when to suggest a rescue dose.
A MCAS friend advocates for you when you want to give up.
A MCAS friend reminds you you’re amazing, especially when you feel inadequate because you’re comparing yourself to everyone else.
A MCAS friend does not shy away from your most gruesome symptoms. They may even one-up you for the sake of levity.
A MCAS friend know how to make you laugh even when you’re delirious.
A MCAS friend makes plans with you to change the world, even though you’ve never met.
Nicolle read it and messaged me a bunch of heart emojis. And then she said:
“I hope some of that applies to me, and is not just a wish list for your replacement friend.”
I laughed so hard at her perfect joke soothing me through her own death. And then realized I cannot lose Nicolle. Not now. Not over a fucking treatable infection.
I had never met Nicolle in person, but at 2 a.m. I drove an hour to her house, canceled her hospice, and did everything in my power to demand her care.
Basically, Nicolle almost died right in front of me in the ER. She was screaming and hallucinating with a temperature of 105.2F. Through it all, Nicolle checked to make sure I was taking my medications and drinking water every hour.
Today, Nicole was discharged with negative blood cultures and a new PICC line. We are completely exhausted, traumatized, and forever changed, but I am so happy to have my best friend still in my life.
I am continuing to write because it is healing and Nicolle always encourages me to continue my advocacy efforts. She’s always been the biggest supporter of my work. Next week I am launching a monthly email and I hope you will sign up. I truly believe this is the beginning of big change, and I look forward to sharing this journey with you.