“Samira eats her words day”

Today was supposed to be the day that the doctors used their most accurate test to prove me wrong. I think it’s called a radio nuclear cisternogram. They were going to put a scary needle in my back, fill me with some kind of magical, radio-active, glow in the dark potion, and track my CSF. […]

Update for updates sake, so you’re not offended by my silence 

Since my last post many of you have reached out to me with you empathy, friendship and solidarity. I am so grateful. I am also lost for words. I don’t know how to explain what is happening, the seriousness or lack of seriousness, so I have stayed silent. I don’t know how to say thank […]

Routine

I have a routine for bed time. I am not by nature an organized or regimented person, I don’t go to bed each night at the same time or wake up each morning with the sun. Each night and each morning are a careful balancing act of desires, expectations, and capabilities. Being “in-recovery” or “sick” […]

Like a yo-yo

Sometimes I feel ok. Those times I think, alright if it is spinal fluid seeping out of your nose all day long, you’ll figure it out. Sometimes I feel sick, physically and that makes me sad and that’s not great but I medicate, literally, and then I feel ok. But mostly I feel sad. I […]

I’m goddamn f&%king miserable

I guess life is about expectations. If you set yourself up for success or failure by believing a certain outcome is imminent, if it doesn’t turn out how you anticipated you end up, well – disappointed. That’s why hope is such a dangerous thing. A beautiful thing, but a dangerous thing.  Usually when you start […]

Purely Informational

WARNING: If you’re here for a moment of uplift, inspiring lesson, casual amount of snark, hijinks or hilarity, a heart to heart convo between my typing and your computer screen, some love, some anger, some anything but apathy, you’re in the wrong place. This post is just an update. All 4 of you consistent readers […]