Merry Christmas to me. 🎄

I’m home and the pain is so much worse than I anticipated. Im pissed and discouraged I have this long dangling tube. I was given zero instruction. I have no idea what to do. Tomorrow the nurse comes & they tell me she will teach me. Merry Christmas to me.

Oh wait, we forgot, it’s me & nothing is ever easy. I’m told I can not get my OT for Raynaud’s at center. Because I need home nurse for my tube, my OT must be at home also.

I’m still going to OT for paraffin therapy on my hands. Guess what? They don’t do paraffin therapy at your home.

My Christmas was completely consumed by my medical “junk”. I had 6 appointments in Boston, on Friday December 21. My tube placed on Monday December 24, Christmas fucking Eve, & visiting nurses on Tuesday December 25.

The visiting nurse is clueless. She knows nothing about my g-tube. She’s supposed to be teaching me how to do everything & she tells me I’m her first patient with a feeding tube.

I spent my Christmas Eve & Christmas in bed. I’m so frustrated, because I’m being told the tubes gonna hurt a lot longer than I thought. Between the debilitating nausea & excruciating pain I’m just…done. We can do Christmas next year.

When earbuds are in & eye mask is on, do NOT disturb me! It means my pain level has maxed out & I’m just trying to survive.

I keep telling the nurse, I’ve started having a milky discharge on gauze around tube. As well as more pain. She says, “well you’ve just had surgery to have a feeding tube placed”. Seriously, I need a vacation from my body.

It’s a mess. I’m telling the nurse, repeatedly somethings not right. My pleas, appear to fall on deaf ears.

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