I had a disability hearing today.

That may not sound like much, but for someone whose health has taken a nosedive, it’s everything.

It’s the frustration of the system, where the specialists only look at their own dots, never putting all the parts together. It’s one doctor saying “that’s not my problem” and another one saying “yes, it is.”

It’s the heartbreak of knowing that no one can tell me why. Of knowing that this is my life now, this new normal. This constant pain, the nerves screwing with my circulatory system, my entire existence revolving around doctors appointments.

It’s the guilt and shame of my 18 year old child putting off college to take care of me. It’s the making arrangements for the time that will come when I can’t care for my disabled child.

It’s the nights of painsomnia and having to take medication to get what little sleep I can.

It’s the knowledge that a good portion of my health issues stem from not being listened to and not being believed. It’s having to weigh benefits vs risks of medication.

It’s having to teach myself a different way to write, by speaking into a headset and letting my words flow from my lips instead of out through my hands.

It’s looking at my collection of pens and notebooks not knowing if I will ever fill them.

But it’s also time. Time to make better choices, time to find the best management of my symptoms possible. Time to spend with my children, even when they see me like this. It’s the time to tell others my story, to help them find their voices and advocate for their health.

Time to hope that someday soon there will be another breakthrough in this world where no one else will go through this.

So tonight is definitely a Ryan Adams night. And candles.

And this handful of meds to be as close to human as possible.