Glasses on

I don’t have a lot of photos of myself so here is one with me and Rory

In movies and In books and Even in life I have seen countless times where the main dorky or weird person gets a makeover and the one thing they seem to do thw most is take off their glasses wearing contacts like somehow that makes them prettier.

And everyone is so amazed by this beautiful person they suddenly see with a new outfit and glasses free and pretty shoes!

They act like this person is so much more pretty then ever before. And then someone says it’s normally the main popular guy or girl or their old friends are like I liked you better before or wow I never knew how pretty you were.

The person then realizes suddenly how beautiful they were all along! They normally don’t go back to their old clothes or put their glasses back on sometimes they do but it’s like they realize suddenly how to be beautiful.

I never understood why you’d want to take your glasss off to look more beautiful. Like I know They might have contacts in or whatever. But why does that make them look prettier.

I think I look less sick with my glasses on then I do with them off. But more importantly the world looks so much more gorgeous to me with them on.

Because when I take my glasses off apparently the world thinks I’m more gorgeous. But the issue is with my glasses off life is a blur I run into things can’t see what’s ahead of me clearly. I have to look closers to see anything.

So while the would sees me more beautifully without them off, I see the world more beautifully with my glasses on.

I think we always do that. I think as humans we see the world is prettier without thinking that the world sees us beautiful or not.

Because when you don’t let what the world wants us to do or be or anything things are easier to see we can see inside ourselves easier when we can see everything outside ourselves clearer.

But when we only care what the world things we can’t see things clearly. We are all blind to the world sometimes when we try to do what everyone wants us to.

So I might not be beautiful in the worlds eyes with my glasses off…

The world is so much more beautiful in my eyes with my glasses on!

Shayweasel is keeping her glasses on…

How To Handle Having A Caregiver

Here’s the thing when I typed “how to handle having a caregiver” into google I thought that it was gonna say things like letting someone helping you doesn’t mean your not an adult or they aren’t babysitting you and that this is needed those kinds of things but no this is what I found…

The articles none of them were pointed at the person who was sick, I find it so hard to have a caregiver to let someone help me.

I’m an adult and have to have someone come here and watch me?

As of 2018 I’ve become someone who has a caretaker, and a respite care worker. Two people that watch me most of the time. I don’t always know how to handle being cared for.

From the time your born you learn how to be independent. We learn to make sure to cry when we need something, we learn that being nice and smiling can help. That we learn to crawl to get something our selfs. We learn to walk so we can do things on our own.

We go to school so we can learn we do chores so we can be able to clean our homes when we are adults.

We learn to go use the to shower how to cook how to drive so we can do things all by ourselves.

As I get the blessing of living longer and longer I’ve been needing more and more help.

My respit caregiver is kind, and she helps me by really truly is here by just being here. With the diseases I have, it can change fast. I could hurt myself if I had a seizure if I had a a reaction. And so on so on.

I am learning to find this as a way for me to help someone have a job, to know this is ok

I’m learning to look at independence differently. To know I’m still an adult. I still need help but it doesn’t mean I’m lazy.

So how to have a caregiver- be kind, tell them if you need something even if you could possibly do it yourself but you know you shouldn’t, tell them thank you and be kind to them, if they make you feel uncomfortable say something to either them or the other people in your life. Think about them like the nurse on Monk solving crimes and someone walks around and helps him he’s still an adult. (We all know Natalie on Monk was way better then the first)

It’s not lazy. It’s not crazy.

Be kind be good be love

Shayweasel is sitting down

Not Failing.. Anyone

 I haven’t been failing my body but I feel like I haven’t been giving it everything I got after I woke up from the coma i felt like my body betrayed me because well it did. It totally turned against me and was like FU Shay who cares what you want. And I just felt like I wanted to turn against my body and not help it with everything it wanted. But this past few weeks I am having to learn to live this different life and get back into the normal habits of living a day to day life and I think I am just jealous of my old body which was horridly not working but it was controllable my body right now is in this like wild weirdo phase and is like I want to have a seizure for no reason and yay anaphylaxis is fun.


  So my body is failing me like I have said so many times before but that feeling of a failing body is not one I like I get annoyed that it’s not doing everything i need and want it to do. i want to be able to breath and walk alone. I want to be able to eat food and drink things. I want to be able to not worry about having seizures or passing out but i have to worry about that and I do not get a break but that’s okay and I’m working hard to learn that.


   I am trying to learn that it is okay to live inside a failing body till the end of my body but I am living with my body and we need to work together to be alive but right now I just feel like it wants to do whatever it wants to do. And that’s been hard for me to accept.

   So this morning I made up my mind that this is my failing body no one else can live inside my failing body. I have a chance to show myself that I am strong enough to live inside my body even when I don’t feel like it.  


   I got my spoonie friends, I got my fight song T-Shirt and I gotta show myself that I am willingly to fight like hell to survive and to do well in this world just because my body and mind and world can fail me at times I do not need to fail myself.

  Stephanie hasn’t failed me once and Nick hasn’t failed me once, my family isn’t failing me my friends aren’t failing me so therefore I have to fight and I have to not fail them and I think I have been failing them lately. By failing myself.

  I think when you fail yourself you fail the people around you. And Stephanie and Nick they have been here for me and with me and they haven’t done anything for me to fail them so I need to stand strong because this is just my failing body so I need to work hard to not fail it.

  I am not by any means saying this is gonna be easy to live with my failing body but I’m saying that I am gonna fight and I am going to live….


  That is all that is really asked of me is to live, live inside a failing body that has overcome so much already, but it’s not about what I do it’s about how I do it.

  I am strong, I am brave but most of all I am a fighter and I am a fighter because of the amazing people who helped me be a fighter. I am a fighter because of Stephie, Nick, my papa, Vana, My mom, Sammiy, Sean, Aunt Helen, Macy, Dara, Rachel, Matt, Josh, My friends, My family they make me stronger. 


  I guess what I am trying to say is that I won’t fail my body because I have too many people who helped my body live this long so if I fail myself and my body then I fail them….

Dear Epipens and AuviQs


Dear Epipens and AuviQs


Thank you for being a thing. Thanks for saving my life.

  AuviQ thanks for calmly talking me through these moments in life where my heart beats fast as my hand holds you and I take a deep breath and put you in my leg to save my life. As my throat was closing slowly it opens up and I’m able to breath.

  Thank you AuviQs and Epipens for being there when I’m going into a horrifying shock that is known as anaphylactic. Thanks for saving my life all the times you have.

  Thanks for opening my air ways so I can breath and even opening them that one time when I almost waited to long to use you. Thanks for opening them up and letting me live.

  Thank you AuviQ for being small so I can take a smaller bag, and be able to fit into my pocket and save my life when need be.

  Thanks Epipen for saving me on that Friday when my friend had to use it on me. Thanks.

AuviQ thanks for that time a few months ago where you saved my life twice in one night once on the chase in my living room and again in the ride to the hospital.

 Thanks to the people who make AuviQs and Epipens available and that make them small and make them so I am able to have them. Thank you so much AuviQ Thank you so much Epipen I won’t be alive without you.

Signed ShayWeasel… Thank you guys are a life saver.