Updates on Updates

Since I’ve last written on here, a lot has changed.

I mean… a lot.

2020 was a rough year for everyone, and it definitely wasn’t an exception here. I know I posted about some of it on the Facebook page, but I figured I would give an update here as well – especially since the blog has been a lot more quiet compared to Facebook and Instagram. So… here we go!

2020 started rough from the very beginning for me, as I ended up being in the hospital with sepsis in January of last year. Turns out that strep throat can actually be very dangerous if the antibiotics don’t work the first time around. Who knew?

A person wearing yellow hospital socks and in bed. There’s a teddy bear at the end of the hospital bed.

I almost didn’t go to the hospital because my brain has trouble recognizing when things are very wrong, (you might remember the pneumonia incident) but the ER said I got there right in time. My fiancé was able to help me understand what was happening, because I got very confused. I got a lot of medicine and way more IV fluids than I thought you could have – but that meant I got better!

I also got mashed potatoes at the hospital, and I love mashed potatoes.

On the bright side, getting sepsis made me do something I always kinda wanted to do – cut my hair short! I was having trouble taking care of it, so we got it cut short instead. Let me tell you, it was a sensory yes for me!

No more getting overwhelmed brushing my hair? I will take it.

A person with blonde hair and glasses smiling at the camera – taken right before COVID started.

On a slightly less fun note, I got hospitalized again for a week during the summer – primarily because my caregiver wasn’t refilling my medications box.

I also ended up with my fifth traumatic brain injury in the summer, for reasons that I can’t disclose because I think the state may still be investigating the person? I’m not sure how that’s going. It’s caused a lot of issues since then – including worse seizures, hypersomnia/suspected narcolepsy (one of the reasons I haven’t been writing much, because I sleep almost as often as the cat!), and a lot of other stuff going on.

My brain has trouble doing a lot of the things it used to be able to, so I have to “take it day by day.” Even this post has taken me several days and edits to write.

But because of that, my doctors said I’m not going back to college for a while. I also have gone from part-time AAC to pretty much full-time, because my brain struggles with mouth words way more since the injury. I already had the neurocognitive disorder and the anomic aphasia stuff, so it’s not that much of a surprise.

On the bright side, I now have a full-time caregiver – who is also a really good friend of mine! I also got a new wheelchair, which is way more comfortable and easier to use compared to my old one.

A person (me!) in a wheelchair with purple hair at the park. They’re leaning on a pink mushroom bag with their face on their hand and smiling.

I’m on break from college for a while and my energy is a bit limited, so the main advocacy work I’ve been focusing on is the Partners in Policymaking program here in my state. The Disability Day of Mourning is coming up again in March, and I signed up to coordinate a virtual vigil for the area this year too. It’s on the same day after my EEG test, so we will see how that one goes!

I have a couple of other posts in my drafts, so hopefully I can start posting again. Fingers crossed!

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