Feeding tube awareness

Feeding tube awareness is important. O have a feeding tube. I’ve had them on and off for the past few years.

I have had NJ tubes which go into your nose and to your small intestines and right now I have PEGJ tube which goes into my small intestines.

Every day I wake up and make my feeding tube forumla the kind I use is called real food blends. I put it in a blender with water. I then strain it into a bowl then wash the strainer off and the blender then I strain it into the blender again then I wash the strainer off and bowl off and then strain it back into the bowl and then wash the blender off and strainer and strain it into the blender I then get my feeding tube bags that I use and put the mixed strained real food blends into the bag. I close the bag turn the bag upside down and put my fingers on the blue longer part of the bag and squeeze lightly to get the air out of the bag and then prime the line that will connected to my feeding tube the one that goes into my PEGJ that hangs outside my stomach.

It takes lots of work but I would be doing this even if I was eating. I do this sometimes 3 times a day depending on what my body handles a day.

I’m thankful for this that saves my life

Shayweasel out

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!

friendversary to Macy! 

I didn’t get to post about this on Janury 3rd so I’m posting today!! A year ago I found a photo of some of my favorite baby food at the time pumpkin and apple baby food because what else would it be?! 💁🏼 one comment on a photo and a DM on Instagram lead me to the giggly and randomness that is one of my weird soul mates Macy!! And Addie!! My friendship with Macy is deep and the bond we carry is strong! Two am FaceTime, Skype calls, tears over everything from the lost to a treatment not working, to Drs treating you horridly to the joy of a diagnoses. To the sadness of more disappointed and more diagnoses and more we don’t knows and more we don’t have treatment to we don’t know what’s wrong. But to finding postivity in the darkness and being grateful for the little things. Macy hasn’t just been one of the most Amazing people I’ve ever known but she has become one of my best friend and strongest people I know. We are fighting illnesses not seen by the naked eye we are fighting diseases, we are fighting our bodies. We don’t get days off we don’t get days to relax. But we fight through we never give up and we never let an illness win. Macy you are stronger then you Even could understand. You have a beautifully fantastic soul and I can’t wait to see were this friendship takes us!! (Also Kyle is pretty fantastic for always being. There and for fighting for Macy! Addie you rule!! And we all know that Rory and Addie FaceTime more then you and me.. 😍😂💁🏼💁🏼🙈 )
  Macy you and me got this!!! Let us fight! 💪🏽💪🏽💪🏽😘 love you!! Happy one year friendversary and happy one year anniversary to being married to your wonderful husband!! 🌻🌻🌾

This is friendship when you are chronically ill. Online, through our cell phones, laptops, iPads, kindle fires, we are strong yet our bodies our week. 

  She was the first person I texted when I woke up from my stuff back in may I texted her photos of epipens and of my underwear.. Best friends doesn’t even cut it in my mind. Macy you rule we got this fight together we are stronger!! I love you!!  

 
Shannon DeRose. 

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)

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.

IMG_4192

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.

IMG_4182

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.

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.