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

realizing Relief Requires Relaying

I don’t like seeing others in pain. I don’t want anyone to ever have a battle in life even through we all do. I don’t want anyone to go through anything like I have. So when life gets scary I want to hold tight to my friends and let them know I’m here.

The thing is I’m not physically close to most of my friends. I see them lose there freedom. And then every time I see God.

I lived in Seaboard a small town with lots of people over 60… a lot of them little old ladies! I loved them all!! As I lived there my papa started taking me with him on his visits to their houses or hospital or nursing home. The longer we were there the more my heart fall in love with going to visit people.

I started riding my bike and going to there house sometimes sitting on the porch talking to them. They were always so kind.

I believe in God, I beleive He knew how to make my life. You can find the lines He put in place for me to be here!

I didn’t have a lot of friends my age but I got good at being pen pals at sitting in waiting rooms with family as they waited for their loved ones. I got good at asking questions so I could keep someone talking. I got good at being around pumps, wires helping cool weird foods and being kind listening and not getting annoyed when someone would tell me the same thing ten times. I felt calm. I learned how people are people no matter what we see. Leo Boone was a man who was paralyzed from the neck down. He was always smiling.

I learned animals are amazing at making people connect sometimes. It’s not that I didn’t already know these things I just learned more about them.

When I was in the hospital even if it was for me or someone else I didn’t mind I had done this before. People always told me I’d make a great nurse I normally told them thank you. Deep down I knew I felt something I needed to be.. and medical was involved.

My friends have health problems, my family does too. I learned and owe more to how God set my life up then any thing I can imagine.

I didn’t want to relay on anyone but truthful I have too. The person I have to relay on that each of us has to relay on is God.

People sometimes act as is you are stronger when you don’t replay on others. And truly it is you are stronger when you relay on others.

You will never be able to find relief without Realizing that it Requires relating on others. Everyone needs to be able to have others relay on them and others to relay on its a balance.

Shayweasel realizing Relief Requires Relaying

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. 

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…

Finding My New Moon..

When I was 17 years old I went to California everyone I knew was shocked by what I was doing, I wasn’t one to step out of my comfort zone much, this was a big step. I at the time was living in North Carolina and California is a far way away. So I went and had a wonderfulish time. I met some great people and some not so great people but when I came back, it had been a year of living at home without any of my siblings all of them are older then me and had left for either college or jobs, it was sad and it was weird, but I think honestly I just missed them.

My sister Vana who told me she would pay me in Ice Cream to read twilight wasn’t joking, she brought me the book from the library when she came home one weekend and some ice cream.

IMG_5669

right around this time I was starting to become ill, and we weren’t sure why. I was going through some test and things, and would take the Twilight book with me to each appointment, it was then that we found out that I was allergic to about nine foods, some being corn, wheat, soy and nuts. If you know anything about food you know that that cuts out over 75% of processed food. My life changed real fast.

But I sat and took this news, and went home and read Twilight more. My sister came home a few weeks later after I had finished the book she brought me the next book New Moon. This book was her favourite but she wouldn’t tell me why. We went the store and walked up and down the ice cream aisle looking for ice cream I could eat we didn’t find any that day but I told her I would read New Moon.

FullSizeRender

 

I love New Moon, it’s become this thing that I do when I get real sick or when I’m having a bad day, I pick up New Moon and I read. I read for hours. I think it’s become like a safety blanket to me. Its something that comforts me.

I think when I read New Moon, I basically had gotten my own new moon, I was set on a path not one i would have choose, I was set on a path of the sickness, my body was then starting to fail me. I had changed my life and it wasn’t by my choosing. I found my own new moon, in a sky full of stars and lots of darkness..

When I went through stuff as a 17 year old I read it and now I read it. Its why me and my sister Vana can write I need to read New Moon to each other and both of us understand that we aren’t doing fabulous.

I’ve learned a lot about food allergies since then and have found ways to have and make everything. But it’s just that when you find something that comforts you.. stick with it.

New Moon is like my safe place, Bella understands me. Vana understands me. My life is fading away when I read it, and for a moment I can forget about the pain…

I have found my own new moon, I have been on this weird way of living but its still good. I don’t look for happiness all the time, I look for the new moon, because its always there even when I don’t see it right away. I just have to look past the darkness in the sky and look past the stars and the planets to find a weird new moon just being in the sky. Life goes hard but remember it can always get better and worse, but the better can be made from the worse. You don’t have to look for the darkness it just shows up, but you can look for the light, that little new moon. That safe place. Don’t look for dark look for the moon. Its barely light but just enough….

Thanks for reading..
Shayweas 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…

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.