Wednesday, December 9, 2020

So, I Had a Stroke

You know, life is weird.

You're rolling along, doing your thing, and you have a migraine that starts off like normal. Throughout the day, you realize that your face is starting to get numb. You think it's a little weird, but it's not a huge deal, so you blow it off as the headache eases.

Several weeks later, you have the same kind of headache. This time, you take your migraine rescue meds and they don't work, so you head to the Emergency Room because you need some relief. The doc decides you need a CT scan because you're having some weird symptoms, and they find a clot in your brain.

It's weird. Over the last few weeks, I'd been really tired. I'd chalked that up to stress. It's really hard to be managing work and supervising distance learning and taking care of the house and dealing with special needs kiddos and feeling like you're doing that all by yourself during a fucking pandemic.

Look, I'm a veteran of all of the major TV hospital shows. I've watched ER all the way through more than once. I know my shit, right? A stroke is not something you can have without knowing it, right?

Except you can. An ischemic stroke is the most common type of stroke, and it's caused by a blood clot that forms or lodges in your brain. If the clot doesn't fully block your vein, or if the blockage is short-lived, then you don't lose many brain cells, and you may not experience many deficits. In my case, I've had some issues finding the right words, which kind of sucks when you write for a living. I'm supposed to start speech therapy to help with that, but I have some other issues going on, so I'm going to wait until after those are dealt with before I start speech therapy.

So, what now?

Well, we're still kind of in the investigation phase. Neuro has essentially cleared me of this stroke. In other words, This stroke is done, and I'm healthy and physically recovered from the acute part. There is no cause in my brain for the stroke.

I do have some heart issues, one of which probably contributed to the stroke, and am being tested for some other issues. Once those are a little more clear I will post about them more. My medical team is great and I feel like they are doing the deed and trying to figure out why I had a stroke at 47. 

For right now, I'm dealing with my mental health and mindset. It kind of fucks with your head to know that you almost died. To know that you were a centimeter away from death. It's definitely made me prioritize some things that I had put aside for a while, and, in some cases, a very long time. I'm turning much more inward and looking at how I can make things flow better for myself.

I took some time off right after I found out about the stroke, and if I have the slightest feeling that I'm tired, I force myself to take that time to be tired. I have a power nap and go on with my day. I've started using BHBs because it's really the only thing that gives me good energy without a nasty crash or a negative result on my gut. I'm trying to focus on being keto so that I'm only eating healthy foods, but

I'm also trying to clean the house from top to bottom including cleaning out the refrigerator and freezers. It's hard to be full keto and clean out the freezers.

I still feel like I'm managing everything on my own. It rips my heart out to feel like I'm barely supported by someone who is supposed to be a partner. I'm utterly exhausted by mid-afternoon, and I usually still have hours of work left to do, between making sure school work got done, my work, dinner, house stuff, etc. And sometimes I still don't sleep until 1 or 2 am. 

Having a stroke, even when you have no lasting deficiencies, forces you to take a time out. It forces you to take stock of where you are and what you're doing in your life, because I'll tell you one thing. I'm not ready to die. I have 10,000 things left to do. I've been raising children for a very long time, and I'm not quite done yet. Because I started at a young age, I haven't done many of the things I've wanted to do in my own life. So I simply don't have time to die yet. I want to go to Ireland, and Norway, and Mexico. I want to bungee jump, and skydive, and learn how to swim. I may need more naps, but I am still going to do all of those things.

Death can fuck straight off. I'm not going on a ride with him yet.

Wednesday, September 23, 2020

Distance Learning Definitely Isn't Driving Me Off The Edge...Yet

 So we're distance learning. With a kid on chemo, there's really no other way for us to do school. Our school is awesome and proactive and is doing everything possible to keep kids safe, but we just felt like distance learning was the best option for our family.

School started the first week in August. It seemed really early to me, but they wanted to have plenty of time built in, in case they needed to take time off. My kids go to a small rural school, so even one kid getting COVID is likely to trigger a full-on lockdown, where the school needs to close down completely. While our county has been pretty lucky so far, the county just north of us has had something like ten cases in the last eight days, which doesn't seem like much, but it's more than double the amount of cases they've had in the entire six months prior to now. I feel like that's a harbinger of what we're in for down here in the coming days. Our county just had its first case at a school (although not our school), so we'll see how that plays out.

Surprisingly, distance learning has not made me crazier than I already was. Maybe it's because I actually see this as a bit of a break. When school stopped rather abruptly in March, we really didn't do much; many of our kids don't have internet, so while we had some packets sent home, there wasn't really a huge effort towards making up that lost time. The kids have pretty much been in my face since March. When school started in early August, we had spaces set up in their bedrooms where they had their Chromebooks, little desks, chairs, the works. They are actually in their rooms for several hours a day, which gives me free time to actually get work done. It's quite lovely, actually.

Let me tell you, I'm loving that quiet time. It's refreshing. By 9 in the morning, both kids are busy working on school stuff, and I usually have two full hours without interruptions. I mean, the dog still barks and needs to go outside, but I don't really count that as an interruption. I take him outside and get right back to whatever I was working on. Then again, from about 1 in the afternoon until 3, I'm free again. It's not perfect, but it's better than what I had before that time. I feel like I'm getting ten times the work done!

I know that most parents don't have it that easy. Part of my issue is that my kids are in high school and middle school. They're old enough that I don't need to be sitting over them to make sure that they get their work done. I don't need to help with math homework, which is really good. Let's face it; me helping with math would only make things worse. 

My kids seem to be doing pretty well. R. is actually thriving with distance learning. No assignments are being lost. Organization is not an issue. He's not being picked on or bullied. A is also doing very well. She's able to progress at her own speed, which is good for days when she's not feeling well. She's being supported where she needs it.

How's distance learning working out for your family?

Monday, June 1, 2020

The Casual Exhaustion of Special Needs Parents

I took a nap today.

Wait, let me rephrase that. It's 1:30 in the afternoon, and I've already taken a nap today.

I can't tell you when the last time I slept through the night was. I can't tell you the last time I got more than four hours of sleep at a stretch. Some nights, four hours of sleep is a good night.

It's not that I lay awake at night agonizing over the shitstorm that is currently happening in our world, or in our home. It's not that I can't get comfortable despite still not having full range of motion in the arm that I broke. It's not even that it's too damn hot, although, in the last few weeks, that has definitely been a contributing factor.

It's that anxiety is a rude, thoughtless bitch, and even more so, I think, for special needs parents.

Anxiety is the voice whispering in my ear. While anxiety meds help me to be able to shut that voice up, it's rarely completely silent. Anxiety meds enable me to be able to focus on something else, instead of playing the anxiety mantra over and over in my head. But when you're trying to sleep? That's the one time you need to not be focusing on anything else. And that, dear friends, is when anxiety is the loudest.

I had anxiety before I was a special needs parent. Back then, anxiety said things like "Did you pay the gas bill?" and "Did you lock the door?" and "Hey, remember that time you sat cross-legged in a group project in sixth grade and realized an hour later that you had started your period and bled all over your jeans, which everyone probably saw?"

These days, anxiety whispers shit like "Hey, if Aria's blood clot fully occludes while she's sleeping, you won't know until you try to wake her up the next morning," and "If they switch her medication to Jakafi and you lose your insurance, it costs $13,000 per month."

Let me tell you, dear friends, that's some bullshit right there.

Both of these things are true, mind you. Thankfully, Aria's clot has resolved, but I'm pretty sure the thought about the clot occluding her vein ran through my head seventy-three times a night until she had the MRI that gave us the good news. Because of anxiety meds, I can ignore it when I'm scrolling Facebook or playing a game or watching TV, but when I'm trying to sleep? Good luck with that.

But it's more than the anxiety, for special needs parents.

  • It's the PTSD.
  • It's the worry about money.
  • It's the additions to the day-to-day stuff (remember to give meds, extra therapy appointments, trying to work full time on top of all of that).
  • It's the feeling like you need to devote more time to your healthy kids because you feel like they're getting screwed out of parent time.
  • It's the having to tell the third good-natured stranger today that you're not looking to add essential oils to your kids' medication regimen, thank you very much.
  • It's the seventeen phone calls that you made before work this morning.
  • It's the begging your boss or your clients for some extra time on that deadline or to come in a few hours late because your spouse couldn't get any time off to take the kids to therapy or doctor's appointments.
  • It's about wondering how many hours of overtime you (or your spouse) can realistically work this week.
  • It's about worrying about the long term effects of your spouse staying in a job he fucking hates because it comes with really good insurance and you both know he'll never find another job at that rate of pay with comparable benefits.
  • It's about wanting to move to the city where all of your specialists (and the really good hospital) are but knowing that rent there is triple what you're currently paying and there's no way you can swing that.
  • It's about worrying about who will take care of the kids when you die if they can't take care of themselves.

One of my oldest daughter's best friends is also a special needs mom. We both understand the issues and we both run on caffeine and sarcasm. Our kids are seen at the same hospital, and we've been trying to get together for a coffee date for over a year now. And neither of us have been able to get our shit together enough to make it happen. Because there's so much to do and never enough time to do it and oh my god I am already fucking tired.

But it's not just a physical exhaustion.

It's an exhaustion that resides deep down in my soul. I don't have physical energy, but I'm also pretty low on emotional energy.

Did you know that the divorce rate among special needs parents is higher than among parents without kids with health or neurological or emotional problems? I'm not surprised. At the end of the day, my husband and I barely have the emotional energy left to be nice to each other, much less make any kind of intimate connection. When our kids were younger, I always looked forward to this time, when the older kids would be out of the house and the younger kids would be moody teenagers, often locked in their rooms for days at a time, not wanting to spend any time with us. Then, I thought, the husband and I would be able to hang out together, watching the shows we never got to watch when the kids were little, have inside jokes, and not fall asleep before the good scenes happened.

But that's not the way things happened. For a long time, we were a tag team. I would be home, working when I could, juggling the kids and the house, helping manage therapies and headaches and bleeding episodes, and whatever else. He would come home from work and usually help out for a while, and we would fall asleep in a pile of arms and legs in co-sleeping bliss. But in some ways, it's gotten harder as the kids have gotten older, instead of easier.

Gone are the days where he walks in the door and I feel like I can get a break, or any kind of real help, with the kids. He's given all he's got to get through another day at a job he truly hates, but can't quit, because there's not another job nearby where we would get the type of insurance we need. Some nights, he doesn't even come home. He's the Chief of our local volunteer fire department. That creates, for him, an escape from the realities that having two chronically ill children. He has several trainings a month, and calls keep him busy a few nights a week. I don't fault him for that. God knows I spend enough time gaming to make up for any time he takes away from the house! We just don't have the emotional energy for each other. It's easier for us to take our minds off of our current situation with distractions.

A few months back, the owner of a local restaurant offered us dinner. We spent hours at the restaurant, eating, playing games, and laughing together. It was a much-needed chance to have some fun time together without needing to rush. But those kinds of opportunities are few and far between. We try to take the opportunity to eat out when we go to doctor's appointments, but we're often rushing to and from, so rarely do we have the time to linger over a meal. And because we eat out when we go to doctor's appointments, we don't often do so when we're home.

I know it sounds like I'm just on a big whining binge. Maybe I am.

Maybe I'm just tired.