Falling Short: Veins and Port

I’m having a major 404 with my port, pretty much since the minute they put it in. Besides the nerve pain that comes with having a surprise chest tube after having a port implanted earlier in the day–comes the obnoxious reality that the port only really works when it feels like it. I’m supposed to...
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My Plan Is Not Jello

When I said I needed some time to regroup, I didn’t mean I was going to fall off the face of the earth–but I guess that happens sometimes when you’re trying to put together a plan. And oh boy, has this been a solid few weeks of planning. Here’s something I didn’t mention in my...
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Risk.

For days I’ve been trying to wrap my brain around what happened. How did I go from having a functional flare to immobile in my hospital bed after weeks and weeks of barely seeing my own bedroom? How did I go from being able to see my body so abstractly to feeling like I was...
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Nurses Just Lie About Things

Another night, another ER visit. Last night we headed over around 5:00pm. Waited in the waiting room for a half an hour before being moved to the very end of the emergency room. Patients were being treated in the hallways I just needed one liter of an IV and a Bentyl shot to alleviate the...
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Sick, Glamorous and In my Underwear

Do you ever wonder if people look at you and see you the way you see yourself? After the last few days stuck in a hospital room the size of a broom closet, with no deodorant or hairbrush-god I hope not. Having an invisible disease, its not always blatantly obvious that you’re feeling like a...
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