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

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.

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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.

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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.

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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.

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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.

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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.

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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…

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  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.

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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)

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.

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…

Open letter to the churches who support BCH

 

Dear Churches and People who support the Baptist Children’s Home of North Carolina. (BCH)

I’m angry. I’m very upset and as someone who has supported BCH I wanted you to know the truth. So here it is.

 

This business is run by, I don’t know how to put this so I’m going to put it like this, this place is like a bunch of anorexic models, they only care about what is on the outside and what looks good and they have no worry about how horribly they are hurting their bodies and the people around them. That is what the people who run BCH are like. This is who it is run by.

 

As you might not know to work for the Baptist Children’s Home of North Carolina, you do not need to be a Baptist, you don’t even need to go to church or believe in God. You don’t need to know a thing about the Lord to work here. And thats shocking. If this wasn’t mostly supported by churches then this wouldn’t be a big deal, but it is. It’s made a mission because of the people in the churches.

Your mission says its

“To provide the highest quality of Christian services to children, adults, and families in a caring culture of measurable excellence.”

But since you don’t have to be a Christian to work for you I’m not sure how you are holding out your mission. You can’t have it both ways. If The Baptist Children’s Home of North Carolina wants to take Baptist out of the name and just be a children’s home. I’d understand. But right now you have it in the name.

 

Most of the head people in charge of BCH are normally more worried about making the children dress and be pretty so they can showcase them and show them off and say look what we did? We changed them. Well truthfully this is the whole baptist children’s home, all of them are all about looking good having numbers saying we saved and we reached 5000 people this year and we are doing great. But if you dress children and women up and say look they are all good but if you don’t change someones heart you don’t do anything, so good job you reached 5000 people but you only changed the outside the inside is still hurting and the inside is still broken you might have reached them but you didn’t touch them. You didn’t heal them. Numbers say nothing. Numbers mean nothing.

 

You can get someone to look like a beautifully wonderful person on the outside but again its just like an anorexic. It’s not okay to what they are doing, if we are suppose to be the body of Christ, then this body of Christ thats at BCH is anorexic and in dying need of being feed by some Very Godly and people who are fully in wrapped in the Lord, and no money and nothing could shake them. Because the people who run this place have starved the baptist childrens home of the Lord.

People like Blackwell and Keith Henry don’t have a christ focused mindset. Really they just need new blood to come in and take over. Start at the top, and work your way down and see who the people who would lie down their lives for christ and keep those people. Because if you have people who are active in church and in their faith on a daily basis working for the kingdom of heaven. Then things might change.

You do have really good Godly minded people who work for the Baptist Children’s Home of North Carolina, but they are told things like – That if they want to cut down their hours they need to cut the bible studies and going to churches and don’t take the children to VBS. And that we aren’t paying you to do that. And thats hard on some of theses truly Godly minded people.

 

Now my own Father was fired from the Baptist Children’s Home, because he stood up and said that being alone with single women was ungodly and was putting him in a bad spot. Now they would say that he refused to do his job, but when they called him to say that he “quit” you’d never guess what he was doing. He was picking up a women from work. He was doing his job. If someone would have come forward and said that a women would be more suited for this job and roll in this part of the mission my father would have respectively stepped down but no they told him that he “quit”. This was not what my father’s job was even in the first place. They told him he “quit” and they are tarnishing his reputation.

 

So I write this because I’m upset and I’m ready for a change. And I need help changing it. I can’t do it alone. Help me stand up and change the Baptist Children’s Home of North Carolina. Because Godly minded people are out there and they need our help to stand up for whats right. We can make the Baptist Children’s Home better, but we need new blood and we need Godly minded loving people who put the Lord first, people second and money last. We need some Godly people to raise up and make a change.

Stand up, its time for a change.

 

I am Shannon DeRose.

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.