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

To The People Who Say I Talk About My Illnesses To Much

On a couple different occasions people have told me I talk about my illnesses too much..

 

We need to go back, to a moment….

When was the first time you heard about autism? How did you learn about peanut allergies? What was the first time you knew what Crohn’s disease was? What about cancer?? ….. Who told you these things? And if you say you read it on the Internet..

image

Then someone had to talk about it for you to read it.. Someone had to write the words you wrote. Someone had to discuss what was going on inside their own body or someone close to them..

 

These things NEED to be talked about, how many life have been saved since people started talking about breast cancer? How many earlier screens have saved a life? How many people have known the symptoms of meningitis and knew when to go get help? How do you know to go to the doctor when you have the flu? Because you knew what to watch for…

 

Someone has to talk about these things for you to understand them…
FullSizeRender_1

People don’t know normally what is Gastroparesis is or what it’s like having 9 food allergies let alone 40 food allergies.. And the only way we can find a cure the only way we can get better is… By talking about it..

 

And on the other hand.. When I do everything throughout the day I must think.. Is this food safe? Did I touch something? Did I get up too fast? Am I having an allergic reaction? Is my headache my normal headache or something more?

 

My body is failing me, I can’t go throughout a day without thinking about it.. I am not talking about my illnesses because I’m bored or have nothing else going on but because no matter what I do no matter how I handle my life. My illnesses control part of it. I must think about it because if I don’t.. I could kill myself. If I touched a walnut if I wasn’t paying attention to what I was eating, if I didn’t watch what I was doing. I could hurt even kill myself…

 

My illnesses don’t take breaks, my illnesses don’t take days off, my illnesses don’t get magically better with medicine.. My illnesses without meaning to have to control part of what I do because I am living in a body that is broken but no way to fix it…

So yes I talk about my illnesses a lot yes this is part of my life on a daily basis if I didn’t talk about it you wouldn’t know what it was or what I was going through. You wouldn’t understand how easily a peanut can kill me or corn, a tree nut, or even some food that I didn’t crew well… Something could kill me easily and by talking about it it could save me…

There is this part of me that wants you to know that the main reason I talk about it, is because if we don’t talk about it because if we say nothing then nothing will change.. We won’t get treatment… we won’t get a cure.. We won’t get better life because no one will be doing research about what’s going on inside our bodies.

image

We not only need awareness we need understanding… We need help, because we need people to understand give us as much awareness as possible because then maybe we could save another life from pain and from being without a diagnoses and without help… Because people with chronic illnesses, rare diseases can go years in horrid pain without a diagnosis without any help, and without understanding…

 

So thankfully we have people who talk about rare diseases, chronic illnesses because maybe one day when I say I have EoE people will have as much understanding as they do for when someone says they have cancer..

I didn’t choose to get a rare disease I just got a few… So if I don’t talk about my rare disease no one will know..

 

So yes my diseases are sometimes the highlight of my life but it’s because it affects my life in every way…

IMG_5983

Thanks for reading about my talking about my illnesses, diseases can be invisible, which is why they are called invisible illnesses, we must first understand that awareness is the key..

 

If you want to talk about this more with me, leave a comment or email me, we can discuss the horridness of chronic and rare diseases,

 

Shayweasel out…

Write Your Story

I have this notebook my sister Stephie gave me, on it it reads “Write Your Story” my whole life I’ve heard this saying write your story, make your own life, live your own life, but I have noticed lately.. People they don’t live there life’s, they just live… They just go doing nothing, but they aren’t taking breaths with purpose and they aren’t writing their own stories they are letting their stories be written for them.

IMG_5665 (2)

Its as if we live in a world where you can live with the way things are or we can change them or we can try to change them, we might take a long time we change them. But we are working throws it.

Its hard to write your own story, because that means you have to live with purpose and with love and you have to try so much harder than ever just to live, you have to be able to try you have to let yourself try and write it. It doesn’t mean you plan out every part of your life it means you live your life as it happens.

When you fall, you get up, you go on. You keep living you keep going on with your life. You don’t give up. You will get shot down on a weekly basis but you have to remember that you are amazing.

People will hate you but truly as long as you don’t hate you, you’ll be okay.. Life is amazing it demands to be lived. Life doesn’t happen when you sit on the side lines if you’re like me you don’t do well playing the field but you’ve found a way to be in the action without ever stepping a foot on the field. I don’t play the same games as the ones on the field but it doesn’t mean I’m not living.

IMG_5662 (2)

I will be the author of my own story, I will live my life. I can’t live anyone else’s because my life is my own. I take breaths and I walk and I believe in tomorrow. I also believe in today.

Because tomorrow could always be worse than today, so believe in today.

I leave you with this.. When you live life as just with going through and not really trying are you then one writing your story? Or is someone else in control? Or are you letting the way other people feel about you… Have an impact on your writing of your story?

 Write your story, no one could write it better then you…

Dear Epipens and AuviQs

IMG_3187

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.

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.

IMG_4631

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)

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.

Fantasticness of Stress

Some people handle stress fantastically, I have never met these people but I hear they are alive and well. I personally handle stress like someone has set me on fire while someone else is shoving rose coloured monkeys in my house which is full of bees. In simpler words, not so fantastically. You might think well maybe you should just learn to handle things better. Some things I handle well. Like death, and sickness, and being in hospitals, just being there for anything. I handle thoses things well.

But things like going into the bank to talk about money, total bee fest. And your boss yelling at you total rose coloured monkeys. I just don’t understand people. Me and humans don’t understand each other. Now give me a cute dog and life is all easy and good. Or  a small child. Things in those things are easy, but other times not so much. So maybe my problem is not stress maybe my problem is people. Huh, this could possibly be very true. I have panic attacks rather easily, or use to.

I haven’t had a panic attack in a while and I’m doing pretty good.. Anyway back to what I was saying is that stress and humans are a part of living a good and reasonable life. Its not easy but its a life. And its one that is worth living. Even through stress can happen daily and things badly can happen at any moemnt. People die and get ill and have bad days and things happen.

So how do you personally handle stress? I might have a panic attack or get mad but its strange, its when I started letting myself be stressed, feel the feelings I need to feel. When my grandma Rosa past a while back. Myself and my parents had gotten to my grandmas house at 4 in the morning and my aunt who took care of my grandma was there at the house and my grandma was at the hospital type place and at 6:45 am we got a call saying they had called 911 for my grandma so on less than 2 hours asleep we went to the hospital and I was stressed and tired, my grandma past that day it was a long emotional day, but how I handled it was strange. I just let myself feel sad. And feel the joy that she was in no pain. I let myself feel the happiness that I was there with her when she past. That I was there when she went from being here to being home. I was happy and sad and felt overwhelmed. But I let myself feel theses feelings and knew that it was okay, to feel this way.

That’s what I think is important in stressful life happenings, so if you lose your job, and if you let yourself feel the emotions of losing your job, the anger and the annoyness and the life over-ness and then tell yourself that you go this. I think thats how stress should be handled and thought about.

That no matter what you don’t know about life, we can live and learn to handle new things, life changes in the flash of a light that can send you into a seizure or it can send you to help someone or it can cause you to feel that the whole life is a hopeless place of worry and horror. But no matter how horrid things seem, learn from the stresses of life and move on. Just keep moving, stop for only seconds and remember, do not forget what has happened to you.

It might be the horror but let yourself remember the wonderfulness and beautifully fantastic things that happened that day in the sun or rain or when you fell and everything changed. Let yourself know how important everything in life really is. No matter how stressful we live life and no matter how easy center times can seem everything won’t always get better but we can make ourselves make things better. So I believe stress is an overload of emotion, don’t forget to feel the bad emotion and the good emotion. Let emotion in. AND feel it…

What to know…

I want to know… But really is what to know, I need to stay on a need to know basics but sometimes is more of a what to know basics,

I know when I go to the hospital they are not on a need to know basics they are on a what to know… what happened.. what are you allergic to… what is wrong?… what kind of pain?? what to know is sometimes a weirdly important part. Its the small things that mess everything up. Its when you want to know something and then learn that you don’t really need to know it. But every now and every then, you learn what to know. And sometimes its when that person tells you what to know that you go… and take that deep breath and you know, that the air is clear and that the pain is right in the heart.

What to know about me… I’m not sure, I barely know me. I have only lived with myself for well about 23 years, I have lived outside the womb for 22 years but I have been alive for 23 years, I like the air I breath even though my lungs believe I need help sometimes. And my body for some reason believes that most foods and most things that you can find outdoors are evil so therefore attacks them, is what makes the world one kind of place that I do highly to the most amazing enjoy.

What to know about Shannon DeRose, is that its just who I am. I am not the enjoyer of a small plant of random food. I ask way too many questions and I normally fall into trouble for this. I would not say I am an easy going person. I like who I am, and everyone else is learning to deal with who I am.

Now what to know about life is that there isn’t a place for everyone but I believe that we can make places for ourselves. We can make everyone have a place, but I think some of us come out with a whole lot of craze and we have to make a place in this world for us, and people who aren’t like us.

   What to know is that we can make places for us. We have to try. And never quit and sometimes we have to say behold….What we need to know is up to us…

Overly knowing to much…

 

I never know how to answer the question “SO tell me about yourself?” I always wanted to know, “Do you want the cliff notes? Or the TV movie? Or do you want the truth?” most of the time the person just wants the cliff notes, basically what’s your hobbies? What do you do for a living? How old are you? Why are you here? and most of the time my answers don’t hold over well. Because I personally don’t understand cliff notes, I want to know all the story, and I want to know the things that don’t always seem to matter.

So this leads me to over sharing sometimes and when the person walks off they hope to never see me again. Or the rare moments that you get the people that are so amazed by your honesty that its like they never knew it could be true and they smile and say wow.

Those are my favorite, but see I don’t over sharing as much as I use to. I’m scared, because the world as utterly horrified me. People are total mean people… just very mean.

They make fun of you for being nice and for standing up for someone or even yourself. So for a while I didn’t shear anything. I mean nothing. I didn’t tell anyone anything about me, because I was nervous, so that has me up to now.

I don’t share everything but I don’t not share anything. I don’t think that made sense. I hope you understood. Its not about letting everyone know what your favourite colour is its about letting everyone be alright and be happy with the answers you give. I take that back its really about knowing who you are talking to

. How nice this person is or isn’t and knowing what they want to know.

When someone asks me know to tell them about me I just ask what they want to know and if the answer is a little, or a lot. I give them what they want and nothing more.

I like myself, I find myself awesome but I’m learning to like other people to. Not all people are bad and not all are good and thats alright. I’m learning to just live and love life.

So overall just know who you are talking to and know what they want to know. Thats the whole point of this. In a very small way.

Don’t bite the people you do know. Only strangers.. That is what I believe.