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.

 

Ahhhh the Hugos! So many awesome winners! So many categories that were completely stacked with great nominees! And so many great speeches–let us make the Hugo ceremony this political every year. And have Afua Richardson host, is there anything she can’t do? Seriously, I was expecting to see her come in on a trapeze at any moment.

Apropos of nothing at all, my favorite poem about bog bodies.

Reading/Watching/Listening

I’ve been watching a lot of the “Science” Channel (which has taken to cramming 2-3 already aired episodes of programs together and call them new) and getting increasingly frustrated with how cheesy and Ancient Aliens-ish a lot of their newer shows are; Contact, I am looking at you.

Also, old episodes of Murder, She Wrote are oddly soothing. Every so often they let Angela Lansbury chew on some scenery, each episode’s set up is vaguely ridiculous, and the guest stars and costumes are the best.

So reading. Not a whole lot of it going on as I haven’t had the mental energy for it. I did read Tessa Dare’s new book, The Wallflower Wager, and liked it quite a bit. A content note on it, though: the heroine has a history of sexual abuse and while it is not discussed in graphic detail, it is discussed on the page (I could see it coming a mile away, Dare was not subtle about clueing in the reader on this piece of the heroine’s history).

Work

Cubicle-land is still going well. It’s still fairly quiet and I’m still enjoying the space.

I am currently stressed out by the bullshit that is intermittent/FMLA leave which HR said I had to put in for in order to “protect myself from retaliation.” Now, every time I’m out for a doctor appointment or procedure, I get to call the company that administers the intermittent/FMLA leave (and short term disability) and they get to amend my timesheet to dock my pay by how much time I’m out. I wish I were kidding, but I’m not. HR, of course, did not mention this little fact when they told my manager I needed to do this (they made no mention of an ADA accommodation, hmmm). I am an exempt employee and I can guarantee you that if I were working 60 hours a week I wouldn’t be getting overtime.

My manager literally does not care if I work 36 hours instead of 40 in a given week as long as the work is getting done–which it is. She’s told me, in fact, that my health needs to be my top priority.

I find it utterly infuriating that I am being nickel and dimed like this–I am essentially being financially penalized by my workplace for being disabled. And that’s some bullshit.

Medical

I go in for a procedure to insert a stent into my portal vein; hoping this resolves the fluid situation which is currently not very fun. I’ll be out of work for three days, which triggers short term disability which is paid, unlike intermittent/FMLA leave.

Saw the NP at my endocrinologist’s practice a few weeks ago and she ordered labs to see how much insulin my pancreas is making and the answer is “not enough.” So I’m on insulin now and will be for the rest of my life. I’m currently only on a long-acting insulin that I take at bedtime, but after we collect more data on my blood sugar levels throughout the day, I’ll also have to take a fast-acting before meals. This is my thrilled face. (Although the needles on insulin pens are much less painful than those on my finger sticky thingummy.)

Productivity

Oh, god. What’s productivity?

Seriously, I’m still married to my notebook/planner at work, but things at home are not super-great in part because I’m measuring my life out in coffee spoons and am often wiped out when I get home from work. But I did spend an hour and a half or so painting yesterday evening, which was nice. No, you can’t see.