The Bad Day: The Hospital and the Great Flood of Rosh Hashanah

How does R.J eat a sub in three minutes flat?

I’ve been working on this bowl of lukewarm soup for the last hour. Is someone refilling it when I look up to check Facebook?

 This is soup in dollar store china.

This is soup in dollar store china.

Anyways, I promised an update as to why I headed to the ER again the other day. I think R.J would have appreciated a little more screaming and crying to make my case for heading there at 6:30 AM.

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But it was just the usual pangs of POTS. Tachycardia, chest pain, general pain, joint pain, dehydration, etc, etc.

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Gym shoes. Yoga pants. Yep, that’s a heart attack outfit.

Essentially: I’m totally fucking over the whole ER. I’m tired of the triage. I’m tired of telling the nurses 82 times what I’m allergic to and watch as they enter it into the computer. Where it is never saved. Ever. Where does this information go? If it’s just a one-time use of information why don’t you write it on a cocktail napkin and pin it to my gown?

I’m tired of skirting around the subject of pain medication. 99% of the time I’m there because I can’t take pain medication at home and need it IV. This is because when a painkiller goes through my stomach it’s essentially going to destroy it and cause me more pain.

Let me lay out my expectations for you: I don’t expect the nurse to cure POTS in the two hours that I’m lying on a gurney. I’m here for some hydration and some pain management and then I want to go home and be with my poodle and do my work.

(Unless I’m there for a sinus infection, in which case I’m waiting for someone to drill a hole through my face until the pressure is released. But that’s PIDD–and that’s another post entirely.)

But mostly, POTS is like having a hammer inside of your chest pounding on your rib cage 24 hours a day. It’s like being in the sun all day until your insides are dry as a bone and your brain is a big pile of mush. And frankly, after a year or so of dealing with it–I just want to hit the express lane on these days. Yes, I have a rare disease. Yes, you’ve never heard of it. Yes, that is a cool party trick when I stand up and my heart jumps 20 beats.

I need hydration. I need pain management. And I need a whole laundry list of fixes including a check-up with a cardiologist about why my beta blockers aren’t working, I need Xyrem to just get the 600 approvals that they need to mail me my medication, I need to be made to not feel like a drug addict when I’m fourteen days into a flare up with not a fucking inch of relief. 

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This was a bad day.

But it got better.

After a liter of saline and a shot of torridol R.J went off to work and my mom swung by to take me back to her house–where I rested, told Happy his new toy was really cool ten times and sampled meatballs that mom was preparing for that night’s holiday dinner.

After several hours of moping, recovering, and feeling like I was in shock I got it together, foraged for concealer in my near-death shade and borrowed a dress from my mom’s closet so I didn’t have to meet company in yoga pants.

Even though everyone who was coming to dinner that night has been–throughout my entire illness–crazy, amazing supportive of not just me, but my mom and Alan–I still didn’t feel like rehashing that morning’s excitement. And believe me–in a room full of 20 Jewbans, there was more than enough excitement.

Just a small family gathering.

Just a small family gathering.

First there was seating.

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Then R.J mumbled through some Hebrew.

Jackie was not having it..

Jackie was not having it..

 

And then the entire kitchen flooded because the new garbage disposal wasn’t connected right.

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There was a towel shortage in the Levy household that night.

There was a towel shortage in the Levy household that night.

 

But on a day like that day–you just want to thank god for some things:

  • Like the fact that I didn’t have to be admitted to the hospital.
  • Like the fact that I have a great doctor to speed me through the process.
  • Like the fact that my Xyrem did, eventually, get approved.
  • Like the fact that I ate the entire box of rainbow cookies before any of the guests arrived–and there was still plenty of dessert left for them.
  • The end.

 

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