I try not to post when my posts will certainly be shrouded in negativity. I try to stay silent and stomach the worst of it on my own. I try not to burden others with the incessant failures and fissures in my life. I try to avoid the constant bad news. I do find myself […]
I don’t like to be redundant, so I won’t describe my pain again. But, I don’t know if it is too redundant to say that I am in it, pain, that is. I spent the last 40 minutes wailing like a baby and fumbling with drug bottles. You see, I had a rough night, I […]
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. […]
For the last hour I have endured severe pain. It is what I would describe to doctors as a ten out of ten. It makes me naseous and steals my spirit. It’s the saddest face on what I term the “happy face scale” that nurses give you when you’re laid up in the hospital. I […]
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 […]
I wake up and I can feel the familiar drip down my throat. I remember this, I remember it from January, it feels the same just not as rapid. I swallow and decide to follow doctor’s orders. It’s nothing, you’re fine. I get up and trudge to the door to take the dogs out. I […]
They say if you love someone let them go. I don’t know who they are, but they don’t tell you that if you let go of someone you love, or they let you go that it hurts like a stupid son-of-a-bitch. That’s what they don’t tell you. They also don’t tell you that they are assholes […]
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” […]
I recently thought I had made progress on the emotional side of healing. The physical side, well that was a mess, and my CSF just can’t seem to want to stay in my body so we do what we can do. And I secretly hope that Herbert hasn’t grown and I hope and hope that […]
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 […]
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