Welcome to my blog! 

Just doing my best over here to chronicle my chronic condition with alliteration, humor, and a whole lot of spoons!

The best birthday present

The best birthday present

Hello friends!

It's been a minute since the last post, and I hope the 'taking a break without announcing I was taking one because well, I felt like shit' was sufficient enough for you to get caught up! If not, subscribe here to never miss a post!

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I am going to let the pictures do the talking, I promise, but let me just first say "EFFIN WHAT THE?" to the crazy last few weeks to month I had. I now wear an eye patch full time due to torsional nystagmus in my eye that causes it to bounce quickly and constantly. I am also fatigued to the max which gets a bit freaky when I can't walk. Needless to say, I am quite homebound now and a bit of a hot mess of symptoms.

When I'm feeling ok, I try to be funny on social media, and try to stay away from the bad parts because if I'm to stay present I can't rehash crappy feels all the time. 

I needed this y'all

So we (my original roomies and I) decided to have a party for my 32nd birthday, with peeps who've been around in one way or another more recently. You know, people I don't have to feel weird around wearing a cute new outfit with my clunky tennies that are the only shoes that fit with my leg brace, earplugs, an eye patch, my rollator, lots o' sitting, and sometimes the inability to keep attention or look at the person. Peeps who get it, but not too many as I am working on input and stimuli.

Thanks brain.

Also, I have a limited window where I might feel pretty good. I am glad to say that I lasted for nearly three hours solidifying and confirming my social butterfly status that I thought was long gone. Good to know I still can put on my rally cap now and then! 

That was obvs awesome, but the best thing to come out of it is, well...you'll see.

While planning said birthday party I came up with the hilarious (?) idea to decorate eye patches, because you know #morefunin2018. I got the idea from decorating onsies at baby showers, though I don't think the diaper game is necessary at this point--ha.

 One of the best lessons I've learned as a newbie disability babe, if you can't make light of your own symptoms/disabilities, your life will be a lot harder. Trust me on this.

So while I chatted like a woman strung out on too much coffee and Baileys (I don't do either anymore, **can't** but it's a good visual of running on meds and adrenalin) and sat on my comfy chariot (my rollator), most guests were hard at work on the other side of the room decorating. No expense was spared on puff paint and stick on jewels. 

What began as a funny way to cope with having yet another visible assistive device, turned into a wonderful activity for everyone involved! I don't want people to be worried I wear an eye patch now, and that my brain (slash invisible BFF) continues to do crazy things. Especially since I will now be doing it in style! This party could have been awesome, but it was better! 

Honestly, these are incredible!

So, we had to take pics

...and I think you'll like it.

A big thank you to all of my loves and supports near and far, especially to those who scored me big fashion points with all these eye patches; this trip around the sun is off to a great start! Each time I need more spoons, this serves as a reminder of how much love and support I have around me. And that ROCKS...especially on the shitty days, amirite?

Most of all, I want to share with you because:

  1.  it's a really, really, REALLY great thing to be seen, especially as a disabled human (for many reasons but I am too low on spoons to explain here). Maybe I'll write another post about it! I'll do my best to explain it, but I'm pretty sure marginalized folks get it.

  2. If you're going through a rough time, find something you love--adapt it, maybe physically, monetarily, logistically...all the ly's--and plan it so you can look forward to it. For that time, make sure what you love and makes you happy (and include people who do too!).

We get one shot, so let's have #morefunin2018!

All photo/video creds in this post go to my awesomely talented sister. You can find her on Instagram go_meander


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PPs: Need support & upliftment from other fun invisible & chronic illness/disability peeps who get it? join our closed invisible/chronic illness FB group here 


Curious about Cerebral Cavernomas? We got you, boo.

Curious about Cerebral Cavernomas? We got you, boo.

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