Author: Shannon DeRose

Why weekends are hard…

/ Shannon DeRose / 2 Comments

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…

/ Shannon DeRose / Leave a comment

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

/ Shannon DeRose / Leave a comment

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 Hopkins, The Clairity Project, ServiceDog Vlog,)

The Medical World Has failed

/ Shannon DeRose / Leave a comment

This post should really bother you, if it doesn’t….

 

The medical world has failed horridly for people with chronic illnesses, they have failed us. I as someone who has multiple chronic illnesses I know. Because as the doctors talk to you like you are either stupid or like you are suppose to understand everything. I have health issues and the doctors they act like I’m suppose to put up with being in pain and being sick because they have no fucking clue how to live with chronic illness, when I go to the doctor and I say well I had one good day last week and then I say “I only threw up twice all day.” Yea thats a good day, I’m fed up with doctors treating people with chronic illnesses like its our fault, and oh they do.

in the medical world you sometimes have to wait nine weeks to nine months to a few years to get to see the only doctor who has any clue what they are doing, people are either misdiagnosed or they are called insane and sent home, or better yet put somewhere like an mental hospital when they have a physical illness that needs to be treated by a doctor who will listen.

Living with an illness is hard but personally what’s harder is hearing the words “It is all in your head” “You are already on the treatment” “the medicine I put you on is suppose to help”

My sarcastic answers to these questions are much easier for me to say then really dealing with another doctor and another treatment that didn’t work. The medical world is not helping because out of the 7000 rare diseases there are only 200 that have cures and most of the rare diseases don’t have treatments, theses diseases are unknown and so most of them are undiagnosed so you have a ten year old child whose body parts body out of place and everyone just says she is loose jointed and then they go on and act like this is fine and then when she is 15 her body hurts and other weird things keep happening but what happens when that same girl gets in a car crash and she is rushed to the ER and she is talking and all is fine but then she dies her heart burst because she has EDS and it wasn’t on any of her paperwork and she didn’t even know, because no doctor put all the pieces together, what happens then?

They die, okay lets go back a little, sometimes doctors want to put us into small little boxes when in reality some of us have multiple rare diseases, and we don’t fit into the boxes of us, well the people with EDS might be able to fit into small boxes but not health wise. The medical world needs to admit they failed the people with chronic and rare disease.

It needs to change, we don’t need to be treated like we are insane every time we walk through the door, my stomach when I throw, I just throw up like a gush of water, if you didn’t want to know that then I’m sorry, but it seems the doctors they don’t want to know either, because as soon as they come into the room, they have made up their minds, when are blood test show we are normal, maybe you aren’t doing the right blood test, maybe its you doctors, because every chronic illness person thinks its there fault, and I don’t know where doctors got this idea that everyone is making up their illnesses, but they aren’t. Maybe five people are but most of them aren’t and you need to deal with the fact that maybe you doctor have no clue what is wrong but do tell me that you know something is wrong, tell me you believe me, even if you can’t help me, just be honest with me and say you can’t because as the person with the illness, I’m not just trusting you with my illness, I’m trusting you with my life.

We have illnesses, we aren’t fakers, we are sick, so dear medical world right now you are failing the people with chronic and rare illness/diseases, and we know that we may never get better but we want some help. So please help us.

  As always I might be a spoonie for life but I just hope I’m not always in pain.

Chronic Illness living…

/ Shannon DeRose / Leave a comment

I thought today about how I feel like people don’t understand what a chronic illness means, I mean I have an illness that I will always live with. But the physical pain isn’t the worst part of having this illness its the emotional pain, sometimes you feel like you talk too much about it, other times you want to just not talk about it for the rest of your life. Its the way people act to you. Its hard to know do I talk about my illness or do I want other people not to know or am I allowed to say blah blah or is that wrong? Its not something I’m okay with, I don’t want people to feel sorry for me I want people to just I don’t know understand.

In my first blog post on here I talked about oversharing and it comes into play here as well, how much do they want to know, part of me really does want to talk about it not because I’m obsessed but because at least seven times a day I’m vomiting or feeling weak or I bend down and feel as if my heart rate went up. Its because every part of my day I’m dealing with the illness inside me. I am having to deal with it, but I don’t want to just deal. I want to be alive and I want to live, but living is hard, so I am sorry sometimes when I have a bad pain day or just feel really yuck I might overshare and tell you to much, but I hope you understand that this pain I feel doesn’t go away I either numb it with pain killers or I go out through my day. I know I’m not going to be cured and I know life isn’t easy but I just want you to understand that I’m living with a chronic illness.

 And guys my fellow spoonies, know that most people aren’t going to understand its not going to get easier, but you will have to deal with people being rude, but every now and then you are going to get this person who will change everything, it might be a spoonie friend or someone who just tries and understands, or someone who has dealt with illness and they are going to be your friend.

 We spoonies have to stick together through the misdiagnoses and through the mean doctors to all the people who are just “dumb bitches” we will no matter what get through this!!