Weeknotes 9 – 2019-09-23

Written by Natalie Luhrs

I'm a lifelong geek with a passion for books and social justice.
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September 23, 2019

 

There’s a lot going on with me from a medical perspective this week (month). It’s a long read.

Reading/Watching/Listening

I have discovered the novels of Betty Neels. Bring on the Rich Dutch Doctors and the Plain-Faced Women with Lovely Eyes who love them! They’re definitely old-fashioned and parts of them haven’t aged well, but they’re also quite comforting to read and don’t require a whole lot of intellectual investment.

I also read Alix E. Harrow’s debut novel, The Ten Thousand Doors of January. I loved it and I’m going to try to write a proper review of it.

Finally finished Roma Agrawal’s Built and it was wonderful. I’m now reading Gretchen McCulloch’s Because Internet and I’m having a hard time putting it down. I am apparently an Old Internet Person, for the record.

I have a ton of recently released SFF to read, too, and as my attention span allows me to sink into novels, I’m planning on sinking in to them.

Work

All I seem to do is process project authorizations and I’m super-tired of it. I shouldn’t be spending most of my time working on this stuff, but here we are.

Making

I started a new knitting project because I needed a break from the two projects I’d been working on. It’s a three-color shawl/scarf called Goldfish Memory and it’s just episodic enough to keep me interested.

Medical

The last month or so has been really hard. I had two procedures to try to place a stent in my portal vein and they both failed and I spent a few days in the hospital last week. The procedure failure means I’ve exhausted the options available at my local hospital and my GI doctor is reaching out specialists at Thomas Jefferson University Hospital. My surgeon now just wants to leave my gallbladder in place unless it causes me more problems and I’m just–no? That’s not an acceptable answer. So off to second opinion land I go.

As for the hospital stay last week… It was not good. I’d woken up in the middle of the night of September 12 with a terrible painful stabbing feeling in my spleen and ended only working an hour that day. I felt a little better on the 13th, but by last Sunday (the 15th), I was vomiting and feeling really really really bad. So off to the local ER we went.

I want to preface this by saying that the local hospital’s ER is very good with physical trauma and heart attacks. They are terrible with chronic illness.

I was put in an exam room fairly quickly, so that was a positive thing. It was going to be the only positive thing for the next 27 hours, the length of time it took them to find me a floor bed. I was on a stretcher for 27 hours. During those 27 hours, I didn’t get pain medication until four hours after I arrived, and not until after I had a diagnostic paracentesis that didn’t use enough numbing or a long enough needle and which had me screaming in agony and left me completely traumatized.

I don’t use the word traumatized lightly. I’ve had enough bad to terrible experiences involving this hospital and inadequate pain management (along with a childhood history of trauma in this domain) that my therapist has been very clear that this is a PTSD trigger for me.

My procedure on August 21 had a mix up when it was set up and the first two hours were done without general anesthesia, just Versed, fentanyl, and lidocaine–I was apparently freaking out on the table (I was semi-conscious), and they ended up calling in anesthesia to gas me. I was able to get some Xanax before my procedure on September 5 and the anesthesiologist spent a lot of time talking to me before the procedure and that one went fine. But even before that: I had a number of procedures last year where I was misled about what would be done for my pain/awareness levels, the one I remember the most being the time they needed to replace the lumens in my PICC line and I was told I’d be sedated, only to find out when I was on the table that they “didn’t do sedation” for lumen replacement and I had to lie there, completely still, while they replaced them. It was quite painful.

So anyhow. Horrible diagnostic paracentesis. I refused to let them continue with the therapeutic portion, as it was too painful. I was sent to interventional radiology in the morning for a therapeutic paracentesis and I had a doctor I know and trust get it going and it was fine. I’d been told that after the paracentesis I’d be taken to a floor bed. Imagine my surprise when I was instead taken to a slightly fancier part of the emergency department. I’d been on the stretcher for 22 hours at this point and it wasn’t getting anymore uncomfortable. I lost my shit, basically. Not yelling, but uncontrollable crying for a few hours and angry tweeting. I learned that if you tag the hospital on your tweets, Patient Relations comes down to see you.

After 27 hours, I was finally taken up to a floor bed–which wasn’t quite ready yet. So I sat and watched traffic for an hour while waiting for the room to become ready.

But that’s not all! I had a headache that Tylenol wasn’t touching, so near bedtime I asked for a Fiorecet. The doctor on duty didn’t want to give me one because they have caffeine in them, so instead prescribed a “migraine cocktail” of IV Benadryl and IV Toradol with an intramuscular injection of compazine. Except the compazine was injected subcutaneously instead of intramuscularly and I now have a hematoma the size of my face on my upper arm–which is going to take months to heal. And it looks awful.

I also acquired a new allergy, to an antibiotic called Zosyn. When they hooked me up to it in the ER, I started having an allergic reaction almost immediately, and instead of stopping it entirely, they gave me some Benadryl and let it run its course. I’m not best pleased by this and it just feels like that’s not what you should do when a patient reports an itchy throat and mouth.

However, I did learn that if I’m out on intermittent leave for an illness/flare-up, then that is paid time off. It’s just the doctor’s appointments which aren’t. Which makes it a bit more bearable, I guess.

And did I mention I’m an insulin dependent diabetic now? Not only am I on a long-acting overnight insulin, but I have to test and inject myself with a fast-acting insulin before meals. I seem to be fairly sensitive to insulin when injected, so I’m doing a lot of dose adjustment so as to not give myself hypoglycemic episodes.

Productivity

Trying out Habitica again, at least for keeping up with personal stuff. Still married to my Hobonichi for work. Not getting a ton done around the house, but am doing my best to not drown at work.

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1 Comment

  1. Victoria McManus

    This is even worse than I imagined. I want to punch several someones at that hospital. Second opinion sounds like a terrific idea.

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