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!

11 Reasons My Downfalls Are Fantastically…

 I have downfalls and I personally like some of the things some people call my downfalls I’m learning to love… So here is a list of things I like that you call my downfall..

IMG_2740

   1. I feel all my emotions so deeply that sometimes it causes me to break down

I feel so much deep that some people say its the worst downfall of having autism but I love this about myself because it makes me have emotions that make some people wish they could feel. I love my emotions even when they are insanely off the chart.

         2 . I enjoy being alone

Some people say being alone is a bad thing but I seriously love being alone It’s enjoyable to me, but see when you don’t have friends to talk to and feel alone, I don’t I like myself I like being alone and just being..

  1.  I am good at knowing what I want all the time

I’m the easiest person to buy for, when you have to buy me a gift and ask me what I want I know right off the bat what I want and where you can get it. It also goes along with eating and drinking and talking to people if I want it. I do it get it whatever…

  1. I don’t enjoy all people

If I like you, you should take that as a good sign that you’re good because I don’t like everyone sometimes I just don’t like people and if I do like you then I won’t stop liking you.

  1. I’m straightforward and tell people off if they are rude

I have what some call a problem but I personally don’t I’m not scared to be like “Gurl… You are being a rude B… Get over it..” And normally the person looks at you for a good minute and then gets over it.

  1. I stand up for what I believe in because I have passion that runs deep

My passion can get out of control sometimes but most of the time it’s all like such a good thing because I am passionate about what I believe in and I always stand up for it.

  1. I’m not scared of what people think about me

I can wear purple tights with a bright green shirt and a skit that has cats all over it and totally think I look and feel fantastically and while some people put a lot of thought and worry into what they wear I’m not scared of what people think about me sometimes I worry about it but I’m not scared of it.

IMG_2797

  1. I care deeply about people I do like

My friends and family the people I love and truly like I care deeply about them, I want to make sure they are okay all the time and I want to know what’s going on in there life’s. I care.

  1. I’m not one to leave you once I love you

When I make friends and when I decided I like someone you’re stuck because unless you do something horrifyingly horrid I’m gonna love you forever and till the end of time. I will care about you and I will want to talk to you.

  1. I will forever be who I want to be

With not being scared of what people say I’m not scared to be fully and totally myself and I love myself.

  1. My chronic incurable rare diseases are a very good thing for me.

I am coming terms with my illnesses and I love my illnesses for what they have done for me… They have given me friends that are fantastically, I have had the chance to do things that I personally didn’t want to do but I’m glad I did them. I’m blessed…

I don’t need to be perfect I just need to be me…

This post was inspired by the song Love Myself By Hailee Steinfeld here is a link to the video https://www.youtube.com/watch?v=bMpFmHSgC4Q 

IMG_5924

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…

Things You Don’t Hear Spoonies Say

FullSizeRender_1

  1. I am adoring staying in bed all day and not having the energy to move!
  2. This infection is so good!!
  3. I love that they don’t have an FDA approved treatment for my disease!
  4. Thanks for telling me how to fix the diseases that I have and that you random person who has no illness…and knows nothing about, I love people telling me info that my 7 doctors hadn’t thought of..
  5. I only have to take 13 different kind of pills!!
  6. Oh my goodness I love getting hospital bills!
  7. Yes I love staying up all night because the pain is just too awesome to handle
  8. I love going to the ER they have snacks!!!
  9. My doctor just called and told me I have another rare disease this was my christmas wish!
  10. I love vomiting
  11. I just found out I’m getting a feeding tube and I’m so not nervous whatsoever!
  12. I love surgeries!IMG_5842
  13. Sleeping in till 4 pm is so great! I just love waking up tired! its the best!
  14. Well my doctor told me I’m gonna die and I’m just over the moon!
  15. I love the fact that I haven’t had a pain-free day in two years! Its so nice!
  16. Missing parties is so good!
  17. I love people not taking my disease seriously
  18. I highly enjoy people telling me that I’m lazy!
  19. I have never felt so good in my life!
  20. My body is so fantastic it does everything it needs to!
  21. Ohh this pollen in the air is so awesome!
  22. Please I love people thinking my disease is all in my head because you can’t see it.. But believe me its not like I had to go through hoops to just get a doctor to take me any kind of seriousness…

IMG_5845

Just somethings that don’t normally come out of spoonies mouths… (Note Spoonie is a chronically ill person!)

Thanks for reading!

Shayweasel…Out!

The Trail Less Traveled is Full of Spiders

I woke up yesterday, and made up my mind that I was going on a walk. A good long one. I was going to do this.

IMG_4885

I packed my backpack with my purse a camera and some water. And I left on my walk. I had a rebound headache from the migraine I had the day before, my back hurt from my kyphosis, my allergies started to attack as soon as I step outdoors, but I was going on this walk that was for sure, I walked through the park I had walked to.

There was this trail that lead off the main trail I was on and it made me think about how the trails that are less traveled are normally full of spiders and bugs and sometimes they have animals that will attack you. I took this path because it seemed cool but I soon turned around when I saw the huge spider in the middle of the trail. But in life I don’t get to turn around, I either have to walk through the spider web or I just have to stand there in front of it, because turning around in life is something you can’t do, you can’t retrace your steps, you can’t go back to how yesterday was.

But you can stand in front of the spider or you can figure out a way to go around it, or you can walk through the spider web even through its gonna be hard to get that web off you and you might even get a spider on you. Or you can do what I normally do, grab something and pull the spider web down. And then walk through it.

IMG_4905

You know when you have any problem in life, if it be sickness, a death, a choice you have to make whatever when these things show up its almost like you can stand and stare at the spider or the problem or you can walk through it, you know its going to be bad but you can go through it.

Sometimes in life I feel like we go through almost blindly we don’t know we are walking on a path we sometimes get lost in the woods, but somehow we get back on the path after a while and sometimes its a different path then we were on before.

When I first became ill, I was lost in the woods for a year, I was sick and I was horrified, but I found this path about a year ago, and it was one I had never been on, So I took this path and I followed it mindlessly as the doctors and nurses told me they didn’t have all the answers, I then found some people along the way on the same path different parts, I found people like Aileen and Macy who had illnesses too, they let me rant about stuff and they had me laughing.

IMG_4912

This path that us spoonies take is one thats very strange to most people in the world mainly because they’ve never seen it. But through all the trees and all the daisies and through all the spider webs we handle this trail is amazing.

The sun shines so bright when it hits that one spot, and you start to like all the trees and you start to find things that make you happy, When you’re sick you find happiness in simple things, you don’t need everything you just want little things. Like those five dollar cookies or that lipstick or makeup or that one mask you wanted that was five dollars more than you wanted to spend.

I have walked through black widow spider webs that then sent me into anaphylaxis I have walked in the rain but the trees they made the rain less… This trail or road less traveled is full of spiders and ants and bees but its full of really rare beautiful things that on the road that is more so traveled they have beat to the ground because so many people have walked on them. I’m not saying its better I’m saying its different.

I know life is hard for everyone in different ways, everyone struggles with different things but every once in a while when a spider is in my way and I fall to the ground horrified of the spider, thats when I miss out but when I grab a stick and tear down that spider web, I know I did something.

IMG_4907

Its not easy but it never will be and I think part of me is becoming okay with that. I’m partly happy to be on this road thats been so hard to live…

Well… This has been Wesday the day where I rant about whatever it is that I please!!

 Come back on Friday for Shay-De foodie Friday where I give you recipes for food and on Sunday which is total randomness…

IMG_4917

  Shayweaseling it!

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)