The Shit Show – Starring the Lyonchs

1. Can we talk about the absolute bullshittery involved with navigating the world of health care and doctor’s appointments and tests and follow up? It’s why people with chronic illnesses lose their jobs or their loved ones quit jobs to become caretakers, because just wading through the bureaucracy takes full time energy and investment. After being assured both over the phone and again at my appointment to place the holter monitor last week that I would receive calls to schedule additional tests stat, by Thursday I hadn’t heard anything. I made multiple calls to my neurologist’s office, sent multiple e-mails over the special medical e-mail system, and was beginning to pull out the big guns: asking for people’s managers or to be connected right now no I will not be put on hold. I want it to be known that no one called to tell me anything was happening or what the process or system was . . .so I just kept calling and sending e-mails. Finally at 3pm last Thursday, the scheduler from the cardiology department called me and was like, “Ok let’s see when we can get you in . . .Oh, we’re just so booked!” and then started throwing out dates weeks in advance. So I said, “Um, no . . .I think you are confused because these tests are supposed to happen this week and my doctor ordered them on Monday rush?” It took another 10 minutes of me being persistent and her finally deciding to look more closely at the referral to realize . . .she’d fucked up and yes, she should have called me on Tuesday. Whoops. But she had an opening on June 10th? When I started crying and talking about losing consciousness I think she finally got it and decided to see what could happen. 10 minutes later she had called me back and asked me to come in immediately for the echo and duplex study, which I did. While the tech was pressing an ultrasound wand hard into my chest, the neurologist MA came in and told me I had an appointment for an EEG the next morning. Oh, by the way, I wasn’t allowed to sleep more than 4 hours that night in preparation. OMFG.
2. The results came back from the echo, duplex and 48 hour holter monitor – all normal. Along with the normal CTA, it seems I will not be needing brain or heart surgery, which is A-OK with me!
3. Thursday night I prepared to stay up late to meet the EEG req’s with a cup of coffee and netflix. L went to go pick up her dad, who was coming for the weekend. (side note: we were NOT looking forward to this visit. L’s dad is chronically depressed, doesn’t properly care for himself, and has actually never asked me a single question about myself. His trip to visit was unexpected and likely due mostly to the fact that he could only use settlement money from an insurance claim in some limited ways, which included travel.) I was settled on the couch when she sent a text asking me to put the dogs up in our room so they wouldn’t be in the way – no big deal. I heard her pull up and went to the door to help them in, because L’s dad is a bigger guy and doesn’t get around super well. I will admit that our house wouldn’t win any ADA awards (or even any certifications!) but it’s also a pretty typical set up – one step down into the yard from the driveway, and then two small steps up into the house from the yard. The steps are even, cement, and not steep. As they were walking into the house, L’s dad just collapsed right there on the stairs. He said his legs gave out. She tried helping him up – no go. We both tried . . .once, twice, three times. Even with both of us (also not small people) using all of our strength, we couldn’t get him up. So, we made the decision to call 911. Because what else could we do at that moment? The fire department came and checked his BP, blood sugar (he’s diabetic) and pulse – they said all were normal but they also said them out loud, so I know actually his BP and BS were both super high – and then offered to either call an ambulance to take him to the ER, help him into the house, or help him to the car so we could take him to the ER. L’s dad wanted to just get help into the house, but L and I decided he needed to go to the ER. The last thing we needed was to have him fall somewhere again, or not be able to get out of the house, or have another emergency happen. She also told me that he’d actually had the same thing happen to him while getting off the plane (why the EMTs there let him go, I cannot fathom?) So, off they went to the ER. L gave me regular updates, including learning from her brother’s (who live in the same state as her dad and see him regularly) that his diabetes was not well controlled, that his liver enzyme tests had come back severely elevated, and that he had recently gotten a parkinson’s diagnosis – all things we didn’t know when we agreed to have him come stay with us. 3am rolled around and they were back, after ultrasounds of his legs showed no clots and other tests didn’t find anything. He hadn’t worn the compression socks he should have, the doctor said, which along with his diabetes, meant his circulation went to shit on the plane. We all went to bed.
4. L, Ansel and I got up at 6am to get ready to go to the hospital for my EEG. Our original thought had been to leave A with L’s dad while she took me, but the previous night’s events made that impossible. I got set up with 25 electrodes on my scalp while L and A went for a walk and to get some coffee. They made me blink, breathe in a bunch of ways, asked me to fall asleep – which I did, just for a moment – and then flashed strobes of varying speeds at me. It took 90 minutes, and then my family came back and retrieved me.
5. We drove home, walked into the house and found L’s dad on the chair trying to put his own pants on And the house did not smell pleasant. L went to investigate and found that he’d clearly had some trouble with the toilet and it seemed, with getting out of bed to use the bathroom at all. She went to go clean it up while I went to feed the dogs. Once I’d done that, I found her in the spare room and said, “No. This is a hard line for me. We clean up enough poop already. This is not what we signed up for. You are 6 months pregnant. This is not OK.” We called her brother and asked him to look into flights back to Indy. Then L told her dad we were sending him home. He was mostly silent and withdrawn, but that’s pretty typical. He spent the day sitting in our chair. He didn’t want to leave to go on a car tour to see our new house or anything in Seattle, and we ordered pizza in that night. We had to lift him out of the chair and off of the toilet each time he needed to go to those places. And you know, that’s ok in a lot of ways because people need help. But he was not healthy enough to be travelling, and this wasn’t information we had going into this trip. L especially felt deep guilt about sending him home, but it became more and more clear how right that decision was. It was a very long and trying 36 hour visit.
6. On Friday afternoon, I got word that the EEG results wouldn’t be back for another week. So, back to waiting.
7. I called my mom twice last week. Once on the day she and my dad moved out of my childhood home to another, larger (but ranch style), newer home; and once on Mother’s day. During neither call did my mom ask about my health, the tests they’d run, or anything else. This is not new, but it does feel especially sad for me. My mom is pretty focused on her own life – on her sprained ankle, on the mover’s taking all day, on the money she has to buy all new furniture, on not having a fence -but struggles to connect with anything that isn’t in her direct day-to-day view. Some of this is just who she is – who she’s always been to some extent, but more who she has become – and some I worry is age and not actually being able to remember things. I feel deeply sad not to have her to connect with right now. I feel sad that my own mother doesn’t seem to care about something really scary that’s happening. But I can’t muster the energy it takes to share all of this with her with no prompting – having to cut into her monologues about dark wood vs. oak floors to tell her that my doctor thinks I might have a seizure disorder? It’s too hard.
8. On the upside, I have an incredible mother-in-law who has sent texts and called and reminded me that I am loved and cared for and thought of, all week. We find mothers where we can.
9. Through all of the shit-stormy chaos, Ansel has been a real gem. He’s clearly either feeling the stress or having his own struggles (probably both; also, fuck the incisor that has been cutting for like weeks on end!!) and has been clingy, not sleeping super well, and a little more sensitive than usual. But he’s also been full of joy and kindness for us both. Yesterday we went to the park in the afternoon. The week before at this park, he’d found a large plastic train that he played with and loved and called “Tom” (after Thomas the Tank Engine) . . .this week, he found what we thought were likely the remaining pieces of the train that had broken/been destroyed. He carried them around the whole time, calling “Tom! Where are you?” Searching for the ghost of his lost friend. Fucking heart break city, am I right?
10. L and I cooked a delicious brunch of ourselves/each other, and even though this week/end has been a little less than ideal, I’m sure glad I get to mom with this 24 week pregnant dandy babe – so Mother’s day wasn’t quite the rub it could have been.