medical mayhem

Merry Epilepsy!

Mercury EEG (Photo credit: Max ☢)

It’s always somebody’s awareness day, week, or month, right? November is Epilepsy Awareness month. If you’ve noticed purple ribbons, or purple in general, showing up in icons on Facebook over the past few days, that’s why.

Seizures and epilepsy are part of my little corner of Fringeland. I believe awareness is particularly important to epilepsy, and people with epilepsy, because there’s such a long history of stigma attached, so much misinformation. There are those who still believe it’s the mark of Satan. Hell, years ago, when Flower Child was diagnosed, I received phone calls from well intentioned relatives telling me if I would just pray harder….The fact is, seizures are a misfiring in the brain, and how much of the brain gets involved and where determines the presentation of the seizure; in other words, what you see. Anyone can have a seizure. A diagnosis of epilepsy is usually made when there are two or more unprovoked seizures.

To give a short but clear idea, I’ll just say Flower Child had a favorite EEG technician long before she had a favorite teacher.

Flower Child doesn’t quite “get” the concept behind awareness, but she knows she’s got a great reason to wear purple every day, and has noticed all the purple icons popping up when looking over my shoulder. Being an excellent advocate, she’s letting everyone know. Sort of. In her mind, it’s kind of like letting people know it’s her birthday, or wishing people a Merry Christmas. She also likes to use weighty words, though their definitions get confused in her mind.

Their Purple Moment (Photo credit: Wikipedia)

So you know she makes sure to tell everyone on the elevator, and in the store (before fatigue brought her down for the day and she wasn’t telling anyone anything), “It’s Epilepsy Appreciation Month! You should wear purple!”

Lots of elderly people in my building, losing their hearing, they all assume they’re hearing her incorrectly if they did in fact hear her words clearly. One wished her a happy birthday. Several others look at me to “translate.” I do, and they do a double take, “Oh, well, umm, thanks for telling me.”

The reality is, my world is pretty small. Most of it is quite tedious. If it wasn’t, I might not feel such a drive to write fiction, and create imaginary worlds. And yet, somehow every day is an adventure.

I’ll leave you with just a few facts:

-Never ever put anything in the mouth of someone having a seizure, you risk injury to yourself and to them.

-Epilepsy is a spectrum of neurological disorders.

-70% of people with epilepsy are well controlled by medications. That means 30% aren’t.

-About 50,000 people die in the US each year from epilepsy. Yes, epilepsy. That’s more than breast cancer, more than skin cancer, more than drunk driving accidents.

-A seizure isn’t always obvious to a casual observer. Tonic clonics, or what used to be called “grand mals” are only one type of seizure.

Epilepsy Awareness Ribbon (Photo credit: Cynr)

Score: Life- 80932, Mrs Fringe-1

This is what I want to do today:

DSC_1878 (Photo credit: Lannuit)

This is what I will do today:

NYC: 8th avenue windows through a bus window (Photo credit: Susan NYC)

Not the Chinese food part, the waiting for and riding the bus in the rain part.

Husband is doing much better, still in the hospital but I expect he’ll be able to come home today. For the record, I called it. Cardiac cath done and stent placed yesterday. When I left him last night, he was feeling much better. Between massive quantities of blood thinners and the new stent, a little more rest once he’s home, he should be a supercharged Husband by Friday. Unfortunate, because I’m so tired I was seriously tempted to shove him out of his massaging hospital bed last night, and get some sleep for myself. Those beds aren’t cushy, but they’re pretty comfortable, you don’t even need any quarters to get the magic fingers to start.

I spent a good chunk of yesterday in the waiting room next to the Cath lab. Went downstairs to the cafeteria for a cup of tea and a snack, got all excited because they actually had dill pickle chips. My favorite! After the first hour, the couple sitting next to the one outlet in the room left, so I was able to settle in and charge my phone. I didn’t have my laptop with me, but I had remembered a book and my iPod, so I had something to do. What I didn’t have was what I needed–earplugs. People, hospital waiting room does not mean party room. If you’ve got company to sit and play the waiting game with you, great. But oh. my. God. There was one group of women who literally didn’t stop yakking and laughing over each other for a second. There have been times that I’ve sat in waiting rooms by myself, and times that I’ve had company. It’s nice to have company, it can be nerve wracking to sit there–especially once you’re an hour past the estimated wait time. Shut the fuck up! I thought I showed remarkable restraint when I didn’t get up and shove my now empty pickle chip bag into the open maw of the loudest one.

Description unavailable (Photo credit: the real janelle)

I’m not going to think about the laundry that’s piled up, the cleaning that needs to be done, the aortic stenosis they saw during the cath yesterday (yanno, by the valve already replaced once), or the look on Flower Child’s face just now as I told her we have to get and go again today. Still no earplugs, but my blinders are on, and I’m doing what I need to do.

They Say It’s Your Birthday

A birthday cake (Photo credit: Wikipedia)

Some birthday surprises are so sweet, so wonderful, they are the cake and the candles all in one. Like my reefing friends letting me know they ordered a new bluetooth for me, to replace the one Little Dumb Dog ate.

Some birthday surprises are more like the dirty plate that was tucked behind the couch and forgotten, discovered after the residual icing has hardened, with a fuzzy layer of mold connecting it to a cushion. Husband gave me a perfect card this morning, beautiful and encouraging without being sappy, funny comments that make sense to us penned in. Then he told me he was having chest pains, radiating down his left arm with intermittent lightheadedness thrown in.

For the record, I will be voting for the New York politician who declares parade paths that block the way to several major hospitals are henceforth banned and illegal.

So, Mrs Fringe spent her 40,001st birthday in the emergency room with Husband. He’s still there, being admitted; I had to come home to take care of Flower Child, who had been left with my in-laws. Damn these laws of science, that don’t allow me to literally be in two places at once.

Galt School of Nursing Practical Training (Photo credit: Galt Museum & Archives on The Commons)

I am not a doctor, nor do I play one on tv, but I have a lot of experience sitting in ERs, ICUs, CICUs, PICUs, and EMUs. So, based on prior experiences, preliminary tests, symptoms, medical history, conversation with the ER doc, and hours spent watching House, I predict a cardiac catheterization and subsequent stent (angioplasty), followed by amazing recovery. Have I ever mentioned Husband’s lineage traces directly to Superman? It’s true, both Husband and Father-In-Law are walking miracles. Truth, even the surgeons say so, and most surgeons I’ve come across are happy to take credit for the Resurrection.

This sucks. Could be much worse, but it still sucks. I HATED leaving Husband by himself. Doctors and hospitals are often wonderful and appreciated. I’m as comfortable in them as a non-medical professional can be(provided I’m not the patient). I can even tell you which roach coaches parked in front have the best coffee for several of the “biggest” hospitals. But they’re still scary.

Life happens. Every day, good and bad, life happens. If you’ve become a Fringie follower, lurker, or even stumbled across this while googling how to trim the fringe on the blanket you’ve been crocheting, feel free to join me in sending some good thoughts into the universe for Husband, a prayer, and maybe, once Flower Child is in bed and I’m drinking my fiftieth cup of tea, a heartfelt “FUCK!”