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

Be jealous of all this..

I’ve had a few people tell me they are jealous I can stay home and watch tv all day! Or that I’m able to read all the time! To be able to eat a bunch of calories and not worry about gaining weight or that I’m so skinny! But honestly if your gonna be jealous of something here

I’m very sassy!

I’m beautiful!

I’m creative!

My parents are steve and Sherri!

My niece Rory knows more then you do!

My niece Wavey is a very fiery red head!

I have twin sisters who are way more beautiful then any other twins!

My nephew Carson is very excitebul

My best friend Jazzy can tell you everyone in our favorite tv shows names!

All dogs love me!

I know every episode of the walking dead! And I’ve seen it twice!

My best friend Macy is one of the funniest people I know and has a great heart!

My sister Stephie is selfless and kind and always gives her helping hand on anything!

I am very good at finding my way around!

I can tell you weird facts about anything! Facts you never wanted to know!

My sister Sam is a quietly loud person with a heart of gold and kindness flows out of her!

I’ve been to Washington state during a toxic stuff released into the air be jealous of that somehow..

I have amazingly wonderful family!

I’m very good at sitting and talking!

I’m a great cook!

My friends are amazingly fab!

My best friend Dara is amazingly sweet and the best gift giver I’ve ever known!

My mom can paint wonderfully!! She can sing more amazing then anyone I know!!

My papa is an amazing reader singer and funny and wonderful at speaking!

My sister vana is super smart she always keeps herself doing things for others!

My brother Sean is one to ask if you have any questions about sports and cares so much about everyone no matter what!

My best friend Josephine can talk just as much as me!!!

This is what you should be jealous about! Be jealous of these friends these family theses facts theses laughs!!

Be jealous of all this!

Shayweasel isn’t jealous!

I Won’t Fail My Failing Body

 

Today I ate lunch and then as my disease made up its mind that this food I had taken into my body was not going to stay, I went to the restroom and vomited, a few times. I tried not to make it a big deal or anything.

When I came out of the restroom, a lady stood there just looking at me and she said “Are you bulimic?” there are a few things about this question, one if the answer was yes that is not the way to ask a stranger in the restroom. But I answered “No I have a disease called gastroparesis my stomach is paralyzed and doesn’t work the way it should.” she then went “Oh well why do you have it?” I hadn’t ever had someone ask me this follow up question before. I answered “They don’t know the reason why. It might be genetics.” She followed up with this “Maybe you just haven’t taken care of yourself.” She then left the restroom and I stood there and looked into the mirror.

My collarbones have become so much more visible, its not by choice believe me. My legs are thin, my cute round face is less round theses days, even though I have a little left of my moon face from the meds a few weeks ago. I stood there and thought.

Its not fair to me, because I have a chronic illness that people feel the need to either tell me how to heal myself or tell me that I’m not taking care of myself. If I had cancer I would be brave, and cancer is hard to face, but I don’t understand why the fact that I “just” have a chronic illness that I should just deal with it. It doesn’t seem fair. I was born with illnesses and more illnesses have attacked my strong so strong body. I’ve been through more in my life health wise than most. I’ve had crazy days and I’ve been in a places where I had to make crazy hard choices.

My body is failing me. I didn’t fail it. I didn’t make myself sick. I just am sick. I’m okay with my illnesses hurting me but I’m not okay with people telling me Its my fault. I do not have cancer, no. I have an illness that is incurable. Its lifelong, Its painful. Its horrifying sometimes. I have things that are undiagnosed. I had a doctor straight up tell me that I’ll most likely be in some pain forever, and that he was sorry. I have had surgeries not many just two, I’ve had an air tumor in my nose.. What’s that? My doctors didn’t even know.

   So no I didn’t fucking give myself theses illnesses Its not my fault. You can tell me off when I’m vomiting in the restroom, but only if you will hold my hair and then give my toilet paper so I can blow my nose and get all the vomit out it. I didn’t make myself vomit, my body is not working. My stomach has just stopped. My doctors are working to either find a med that works or a feeding tube might come into play or I might have to do some other stuff that I truly just don’t want to do. I want to go and live my life. I really want to go on that long bike ride.

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I’m strong. I’m really strong, but you see me as an attention seeker in some weird public restroom, you didn’t ask my name, you didn’t tell me you were sorry this happened to me, no you blamed me. My body is not my fault. My mind is not my fault. The things that happen to me are not my fault. I only get to choose how I react to them. And man I’ve reacted damn well… I’ve done pretty good. I choose to wake up. I choose to keep going because I don’t see the choose to stop.

   My body is failing me, but one thing’s for sure, I’m not failing my body.

 

This has been Wesday the day where I rant about whatever I please. And today I ranted… Don’t blame me for my illness, I will not fail my body.

Thanks for reading~ Shannon DeRose (Shayweasel)

Why weekends are hard…

I hate mondays Fridays, I know what? Shay? How can you hate the weekend they are fantastic. One let me say I haven’t always hated them. And I still hate Thursdays more than I hate Fridays but for me I hate the idea of the weekend, that you have to go out and hang out with friends or if you don’t have plans then you are just going to die alone or become a cat lady.

I mean its not a big deal. I have been a nanny and my idea of a friday night was the parets going out and me making like 100 dollars thats my idea of Friday for a long time and when I wasn’t working I would sit in my living room watching TV shows or movies or I would be on tumblr for like nine hours.

So I don’t get where this you have to be busy on the weekend sleep in and go out and party or go to church on sunday. I don’t get it. I want to do what I do on a normal day. To me the weekend ends up normally being really boring and I don’t enjoy it because everyone is saying “Oh my I’m doing blah blah..” I mean even if I had a lot of friends who wanted to do stuff the weekend wouldn’t be when I wanted to hang out it would most likely be a random day.

But I want to say since my chronic illness kicked in over drive, the weekends end up being really hard on me. I feel like I am missing out on a part of live that I never knew I needed but I don’t need it. You might be someone in school or work the weekdays and when you get a free day its like fantasticness but to me it sometimes end up making me sad because I’m like I don’t have energy to do anything and its not going to change just because its the weekend sometimes I have good days but they are normally on a weird day like Tuesday and I get to make breakfast and go to the store, but my body doesn’t know that its the weekend. It does what it wants to.

So why am I telling you all this? Because I know that people with chronic illnesses might feel the same way, so if you know someone who has a chronic illness go over and watch a movie with them and don’t try and make them talk to much or anything just let them be but be there with them. It means a lot when you get a friend who can sit in the same room on their laptop as you and not talk but will say something like did you see this?

Or when we need to rant about shit you listen. Its hard because we might seem whiny but it really is that some of us aren’t around people. Don’t talk to people, and a lot of us don’t get to see very many people at all or only talk to people online.

The weekends are hard because its not just we can’t get out its that no one wants to stay in and no one wants to hang out with you.

When you are diagnosed with a chronic illness you normally lose half your friends right off the bat and it kills small parts of you. So yes, if you want to help make weekends better then just be there and say what’s on your mind.

My name is ShayWeasel and this has been a weirdish public blog post…

#spooniestrong #weekendssuck #fuckit

Internet people…

I have a problem. Its not that big of an issue, its more like well.. .Let me just tell you

I’m an internet type person, I enjoying the internet, I am not that social of a person, My sisters are mostly all very social.

They love people most the time, me? No. I can be highly rude and I sometimes would rather read blogs and watch youtube videos then talk to people. Yes this could be a problem. I like to say that this isn’t a problem at all, that this is totally normal, but lets take what I’m doing right now.

I’m sitting in a sort of dark room, my family is downstairs and I’m writing a blog post, yes I’m writing a blog post upstairs away from my family, while listening to Lady Gaga through headphones. I really fail at social things.

Today as we all sat in the living room I played YouTube videos that no one asked to watch on the TV using the chrome cast, but personally I know it seems weird that I’m not a huge social person but I do like how I am. I don’t think I’d change much about myself and the fact that I am an internet person is okay. I’ll stay up late watching YouTube videos reading blogs writing blog post and well sometimes making YouTube videos which I make private because I’m so nervous to show people.

I might not be social face to face, I might be shy and I might get upset when people don’t want to hear what I have to say but I like myself I’m weird as well… I’m just Shay

and I like that about me

My name is ShayWeasel and I’m an internet person if you’re an internet person let me know and we can be internet people together and maybe we can be awesome and weird as shit together from a far.

  So yea thanks for reading… I guess thats cool…

Its not “Just” the Internet

What people don’t get about team internet.

SO team internet, we are a random group of people, you have people like Grace Helbig who is having a fucking TV show come out this is a big deal, but what people don’t get is that every time I sit down at home or in a bookstore and watch a youtube video of Tyler Oakley or Mamrie Hart I feel like they are my friends, I feel like I know them. I laugh outloud and I cry from laughing so much. They don’t just act like they care they have things they care about Connor Franta raised money to build wells for people how fucking cool? Tyler Oakley raised money for suicide privitin. And Hannah Hart got people to work together in communities to help the world be better. I mean thats just a few what people or some people don’t understand is that we don’t just find people online to talk to and get in trouble with no…. we work together as an online community to make the world a better place to be alive in together. We want everything to work together. We want to live in an earth that’s more amazing than ever. I like the way we can work together.

No the internet isn’t always safe, there is a lot of bully and stuff but when you go to a youtube page, like scishow and you learn about something that in school you should have learned but you somehow you missed it or someone just didn’t talk about it. To me shows like Scishow make my life better, I love learning and people never took me (still don’t) seriously when I talk about science and when I watch these videos or have a convo in the comments it makes my world a little better.

What you need to understand is that team internet is not just a bunch of weirdness its an amazing platform that holds a bigger world than you know. Yea people are all different but the internet makes the world smaller and when I find someone that says something and I go you like the “vlogbrothers?” and they look at me like what? Thats what makes the world funnier and better because we are DFTBA!! We are working together to make the world less suckish.

My first time I got on youtube for real was in 2009 it was super late at night and I had this boredom deep in my sleepless soul. I watched a video by rhett & link and I laughed outloud in the middle of the night, my world changed I found people who lived in my state, and were making videos, Rhett & Link now live out in Cali, they followed their passion and they blew people away with the laughter of others. Thats what team internet does. They gave me hope that I could follow my weird passions even if my passion was just writing a blog post or making a weird video.

Its not that the world online is nicer or anything its that its just different. I remember when I found this girl with blonde hair and she was weird and she was surely random, Grace Helbig would become a youtube video I would watch all the time. I would laugh and I would giggle at all the weird things. I watched Juilian Smith and would not be able to stop laughing people would have no clue what I was laughing at.

I still go back and watch the video “Trees Hate You” because it makes me laugh so hard that its my goal in life to be able to be that random.

The internet and Team Internet and team DFTBA is not just a good thing its being able to say I’m hartosexual and someone going me too. And both of you being able to find a place and for me to feel like I can watch a video on the internet and I can maybe chase every dream I have.

People that make youtube videos we all know they start off really small, they make these videos because they just want to. I love being able to see Tyler Oakley and Grace Helbig on cable TV because they have been apart of my week for a long time, they have made me laugh and made me think.

I don’t think people when I say I watch Youtube videos I don’t think they get it that what real happens when I watch a youtube video mostly everyday and these people that I don’t know are like weird friends, they make me feel less like I live in a world full of people who don’t understand.

We are the people who will No we are changing the way people think, there are videos about coming out and about being true to yourself on the internet, we are team internet we are DFTBA we are amazingly fantastic and we will we are changing everything, the world needs people that understand the giggles of a miranda sings video and why I wake up 20 minutes earlier a lot of times to watch a Good Mythical Morning episode and why I like to sit on sundays and watch Danger Dolan and why when I don’t know how to do something I google it. Or when I need to feel like I am better than this I watch Sprinkle of Glitter videos and why I like the way I am because if I can be this random and no one likes me where I’m at I can be liked by some on the internet.

If you ever feel like life isn’t great or is very suckish then remember that people on the internet and all over the world are trying to make it less horrid. I know the world might not be great all the time and when people are rude or stupid you can get really mad but remember that people are working so hard to make the world less suckish. I love what Youtube has done for the world. Its brought us closer. Its made everything different in a good way.

 

You see the YouTubers you watch become friends, I remember when I found O2L videos and thought to myself these guys came together and made something wickedly random videos, they all made me laugh.

Youtube, people who blog… People who have a job through the internet is amazing. Just so you know, life sucks but we together can try and make it suck less…. Just like the vlogbrothers say

 

The world is made up of all kinds of people, let the world be better, and also let them be amazing. Life will get better….

 

I love finding people on Youtube like ServiceDogVlogs (Tatianna) who has the awesome videos and a great singing voice and she talks about stuff like shit people say to service dog handlers and you have people like The Clairty Project (Clare) who makes videos on what its like to be awesome with a chronic illness and she just talks she did theses reviews of red band society and made me want to watch the show so I could keep up with her reviews. Both Clare and Tatianna make videos on life with chronic illnesses. Its how you look at it. And they are amazing,

 

We are going to change the world, we are changing the world. We make everything so different and the way people start off real small give people hope that maybe we can all be awesome people, because we are all awesome person but every now and then we forget that we are awesome and that we make the world more amazing by just breathing in. People like Sam Pottorff I have randomly laughed at his videos but he also talks seriously about things and he seems so raw sometimes, as a lot of the YouTubers do.

There are things like VidCon and playlist live and all kinds of things because we as a whole make the world weirder more random and we are learning as team internet that we don’t have to agree on everything but we have to care and love each other. We don’t want hate and I think team internet will be the ones to change that. I think we will laugh as the videos we watch and all the blogs we read have made this world a more easier place to live. Its hard to know where to stand on everything but we have the world at our finger tips and its amazing. So here is to team internet and all the people who are all about being as random as fuck. This people is how you team internter YouTuber style, thanks for making videos keep it up

(Shout out to AConMann, Anastasjia Louise, Bunny HopkinsThe Clairity ProjectServiceDog Vlog,)

Health is amazing!!

when you get diagnosed with anything, you have some options, you can make up your mind that you are going to just “deal” with it. You can try and find a cure. Or you can make up your mind that you aren’t just going to “deal” with it or try and find a cure but you are going to have this disease or syndrome or allergy or other health issues and say “Welcome to my life.” It’s not that you want this illness or whatever to stay and hurt you, but you aren’t just going to “deal”

No I’m not battling any illnesses, I’m living and I’m blessed to have problems, I know I sound like a Pollyanna (overly glad person) but you can’t let something, like a health problem or something like food allergies and things that could possibly kill you.

Tomorrow I could go to the store and not purposefully touch a walnut on my way to the restroom and pass out from anaphylactic shock in the restroom and die. Thats a possibility. Its something that could happen. Life can kill you or it can make you scared to live or you can just live. You can live with anything.

WE as humans can adapt to anything, we will learn to be happy without anything. People die and we have to keep going on.

So you’ve been diagnosed with something that in time will either kill you or you have a possibility of dying from it. Think of it like this

Yesterday morning your great-grandma who was 105 years old passed away, you have to feel sad and go and lie her body in the ground. After you have lied her in the ground you have a strange choice, you can either go on or just sit and cry, so take a moment and remember what life was like with them and then get up and go on.

Walk the miles you want, do what you wanted to do before all this, but you will just have to do it differently, yes everythings going to change but its okay. Its good change. You will miss things you will cry moments of life will fall and you won’t get to be apart of it. But life can be fantastic.

Illnesses, health “problems” are just random things that happen, if you didn’t have this health thing or whatever you would have something else that would make you complain and make your life annoying. This isn’t going to be easy, I mean seriously nothing is easy. Which I personally am happy for.

It took me a long time to really understand how blessed I am to be able to understand people who have things that aren’t a bump in the road no they are a random hill thats really nice to have met along the way. I like my bumps, I like my holes, and I like the things that make my life hard because without them, I wouldn’t be Shay, I wouldn’t be okay with how much change can happen in a moment or a day or just a minute. Life changes everyday we have to deal with things.

 

I’m not right about half the stuff I say, but its what I think and what I think is what I think and no one else can think it for me, so if you don’t like it, then you don’t have to read it or hear it. I’m glad people are all different, I’m glad that we can life at stupid stuff that happens, remember that not everyone is out to get you. And that some are.

So welcome if you are newly blessed with a health issue, because this world is a beautifully artful place with randomness all over your face but it is amazing. Its just amazing.