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…

The Medical World Has failed

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…

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!!