Remembering I'm On Disability

When It's Time for a New Medical Mystery Tour

Two Fridays ago I found myself in a hospital through all hours of the night for the incredible birth of my first ever nephew. It was a joyous occasion and many people are lucky enough that their joyous hospital visits outnumber their more challenging ones. I am not one of those people and, I swear, it sometimes feels like my body feels the need to revolt in exactly these situations to remind me.

Rare Disease Life

Last week, on Leap Day, Rare Disease Day was celebrated. The day after, a Friday again, I was back in the hospital, this time for me.

Rare Disease Day is of particular importance to me because my body is home to a rare disease called Idiopathic Intracranial Hypertension or Pseudotumor Cerebri. I am very happy to say that most of my symptoms for this diesease are stable, but the weight of having a rare disease doesn’t always leave the soul as quickly as the symptoms might calm in the body.

And my body’s medical adventures have not exactly come to a rolling stop.

Last Friday, I was back at the hospital, this time for a brand new medical mystery that is, as of today, still unsolved. I know I am nowhere near the same torture I went through with my IIH/PTC, but I can’t help but feel the sting of the professionals not knowing. When I was finally diagnosed with IIH/PTC it was after at least three years of suffering without explanation or treatment.

I won’t let that happen again.

The hospital ruled out some big scaries Friday night. Today’s doctor appointment added some more to the plate. A specialist is on the hook for Friday morning and I have a tiny booklet’s worth of prescriptions for tests and meds that need to be dealt with.

It’s all getting done, one thing at a time and the Stop Writing Alone March Calendar of Events is one of the things that still hasn’t gotten its due time. I’m actually kind of grateful since there was nothing standing in the way of the specialist’s appointment.

Anyway, this is all to say it is coming. There are no appointments tomorrow and barring any kind of emergency symptoms, I should be able to work at a snail’s pace through the day to get it delivered.

The other thing I wanted to say this evening is that I know I am not the only writer here who suffers from chronic complications. One of the things that comes with that life path is being able to give yourself grace first when in a moment like this. No one leads the perfect writer’s life and many of us are juggling our versions of an imperfect writer’s life with a wonky tool set. I’m here to remind you, it’s not any less meaningful. It does not tarnish our words’ impact. When you are physically feeling not great, don’t let your inner critic take your psyche down with it!

For any other writers today reading this not having their best day, I will remind you, as I have been chanting all week: THIS, TOO, SHALL PASS!