“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. They were going to prove to me without a doubt that all this leaking and pain is not CSF.

If you’re late to the party, after 5 months and 4 surgeries to fix a CSF leak, I came away convinced that I still have one and the doctors were convinced I didn’t. We tried to “agree to disagree” for a while but that is really easier said than done when you’re the one in horrible pain and watching what could potentially be brain juice drip out of your nose. I fought hard to get the doctors to stop dismissing me and then spent weeks psyching myself up for today’s lumbar drain. I spent the weekend naseous and pretty darn depressed and overwhelmed by life.

Then yesterday as I was looking around in amazement at the way I had gotten everything done in time to take today off, I got a voicemail that today’s procedure was rather unceremoniously cancelled. Something about not having the right dose of whatever they need a dose of. It was a mix of relief, and then stress that it would happen later, and then deflation, and now, frustration.

Today was supposed to be the day the docs served me up some humble pie and proved to me I wasn’t leaking so that maybe, just maybe, I could relax for a moment without the fear of infection or pressure headaches. It was supposed to be “Samira eats her words day,” the day I get told that my body and symptoms and intuition are wrong and that I can move on to find anther cause of my pain and my dripping. 

That was all supposed to be today, but now, it’s just Tuesday.

Peace and love,

Samira 

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5 thoughts on ““Samira eats her words day”

  1. Hey lady, I went through my best friend having multiple brain tumors a year ago. It was the absolute worst. If you ever want to commiserate, cry, bitch, or do something unrelated. hit me up. Much love sista, stay strong!

    • Thank you love! And I am so sorry about your friend. I am always here to commiserate (as long as there are snacks). Thanks for reaching out and for the love. Xo!

  2. Dearest Samira, What a roller coaster of hopeful anticipation and defeated expectations! If the person responsible for procuring the dose knew the full impact of this last minute cancellation on you they would feel awful, and they should. You have borne so much. I regret that your medical team dropped the ball yesterday. It’s a very tough time. Uncertainty is unbearable. Sending the world’s tenderness your way. Susan

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