“Well, that’s a lot of shit.”

Last post I skipped what was really going on with me. I did it because I wasn’t really dealing with it well. Not sure I am now, but I have to come clean. For myself. So forgive me this post, less reflection and more just sharing.

The optic neuritis (ON) I was hospitalized for in June didn’t just manifest itself, it doesn’t really do that. I wasn’t exaggerating about the tests and tests. When I was discharged from the hospital, we were waiting on a few test results. The kind of tests the drs say, “we had to send them to MD Anderson, we don’t do them here” tests. I had decided they were inconsequential. That was a mistake, I wasn’t prepared for the news that I have a rare auto-immune disease called MOG AD. As I sat in the ZOOM room with my neurologist (not something I thought I would be saying) trying to process the news, it was a gut punch. The following weeks have been emotional and I’m still working on getting my breath back.

In the family of auto-immune diseases this is a pretty manageable one AND it’s life-changing. The body that I thought was healthy and strong is attacking itself. I am at risk for ON and other cervical spine inflammation ‘flares’ for the rest of my life, which could lead to disability. I will get drug infusions 4 times a year, for the rest of my life. I will have to watch this, the rest of my life. The cycle of emotions associated with this diagnosis have spun from fear to confusion to relief to fear to anger to….well, you get the picture. And that isn’t even all of it.

Because they were taking scans of my brain, they found something called a clival chordoma. A RARE small tumor forming on the clival bone, which sits between my nasal passage and my brain. It has to be removed. So, back in the hospital, without Andy, in the time of Covid for ‘brain surgery” (endoscopic – through the nose) AND, I’ll have to be watched, for the rest of my life. It’s scary as hell under any circumstance. And it’s my bonus rare disease.

So yeah!

It’s a lot to deal with. To quote my neuro-ophthalmologist, “that’s a lot of shit.”

How I am doing? I have some loss of sight in my right eye, that may or may not come back. It’s manageable and my fashion eye frame collection has expanded. A girl has to look good to feel good, right?

I am having surgery in August, right after I turn 48. I start treatment for MOG in August, which will lower my immunity in a time when masks are political and covid is spreading throughout the south. While none of this is life-ending it is definitely life-altering. More than anything else, I’ve been working through what this means to me, personally. I am person who has an auto-immune disease and a ‘cancer like’ disease and I’m only 47 (okay, almost 48). My body is doing things that I cannot control, so I have to find things that I can control in this crazy time. I have to remind myself that anxiety and fear are allowed during this time and I will work through it.

For now, I’m trying to take one day at a time. We’re escaping up to the mountains this weekend for a break and a change of scenery before the surgery and I’m focusing on the things I can control and leaving the brain surgery and MOG up to the experts.

What I have let myself do over the last 6 – 8 weeks is ask for and accept help. Help at work, where I am grateful for a team and an employer that encourages it. Help from friends who love me, when I can’t get it all done. Help from Andy to navigate my emotions and our reality. At times, I am not sure I had a choice in asking for help, but it’s been a good lesson. For that and the people who love me, I am grateful.