One thing I still haven’t reconciled is how completely isolating it is to become disabled in your 20s. Over the past 5 years I have lost so many friends, and it’s incredibly hard to make new friends because of how different my life looks than my peers. I never expected to be so alone.

I finally got approved for Fabhalta (iptacopan)! I’m not naive enough to think this will be a miracle drug, but I am hopeful that it will at least slow the progression of my #IGAnephropathy.

I’ve been thinking a lot about how isolating it is to be disabled and severely immunocompromised during a pandemic. I used to be an incredibly social person, but a lot of those friendships have faded because I’m not able to do the same things. I don’t know how to begin to make new connections.

I have one nemesis in life and it is Accredo Specialty Pharmacy. I have spent hours on the phone with them and have never ONCE been given the correct answer the first time I’ve called about a problem. Nobody is ever on the same page, and it ends up with me waiting weeks or months for meds!

The social model of disability is valid, but it isn’t the whole story. Disability sometimes involves excruciating pain, debilitating anxiety, inability to process sensory experiences or language or other input. Even without ableism, disability is…disabling.

At the risk of reading too much into Bluesky’s success at the moment, I do think it’s a signal that people don’t want to be surrounded by bots and manipulated algorithms

AI can only go so far. We want human connection.

I have a cystoscopy scheduled this morning. My body has been scoped, poked, and prodded in hundreds of ways, but this feels the most intimately invasive. Fingers crossed we at least can learn something from it.

I know I am literally screaming into the void at this point, but trying to coordinate with a specialty pharmacy is how I KNOW this is the bad place.