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!

Choose To Be Healthy

I’ve had different illnesses since I was a child. My body has never loved me. But neither has my mind. I know things about life that most people don’t even know. Because they live a life where their minds, brains, bodies and health is just something they never think about. “healthy” to most is a choice, they can choose to eat healthy food, they can choose to go on a walk for their health. But for me “healthy” was just nothing, it was just not a choice, my health has never been good, never horribly I’m about to die, but its never been good. Its always been something that I’ve had to think about through.

My brain, its always failed me. No matter how hard I would try my brain was not what I wanted it to be, or what everyone else felt it should be. But a few years ago when my brain turned fully against me and basically tried to kill me, I knew my life was going to be different after that, I knew I’d have to accept the fact that my body, my brain, my life was not going to be easy and that everything I could possibly do was be alive.

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So the strange question at hand is… What is healthy? What do I see for my future and how do I want to handle my health? My life? I want to be alive, thats the first thing. But I want to be awake and I want to be able to live happily and beautifully.

My body doesn’t seem to always enjoy doing things its suppose to do like eat food or make the necessary hormone my body needs to live. So I could choose to be upset or happy but I could and have choose to just have emotions and live as I please.

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Today I was riding in the car with my sister and a few of her friends, her friend said jokingly as he smoked his cigarette that he was only going to live till he was 50, because of all the smoking and drinking and partying he is doing now. But I knew in my heart that those sometimes or people like him or my moms biological father they are the ones who live while people like me and so many others we might not live to be 50, I’m not saying I won’t live I’m just saying I might not because of my health and its not because I don’t have the choice to either eat healthy food or not smoke or go for a run, but I don’t get to choose my heath. I barely get to choose my treatment, but I get to live, I don’t know how long I will live, I mean I could live to be 100 years old, so many treatments are available  and become available all the time.

What I’m trying to say is that if you can choose to be healthy, choose it. Because I don’t get that chance, and so many people like me don’t. And its not fair. So take care of yourself, love yourself, take care of your body, and health. Because you can lose it in a day. Or like me you can’t lose what you never had.


I’m happy I am, this blog post might not make sense, But I am Shannon DeRose this is my randomly rantingness. Thanks for reading.

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

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.

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.