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 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.
I have had so many different times not be able to get help or to understand what to fear where danger is or was and what to do.
Walking alone at night seemed simple no one else was around so I thought it was safer I don’t like seeing a lot of people at once so the quiet of night seemed better.
In 2015 I woke up from a coma and the doctors all said I was faking the seizures that put me in a coma in the first place. I was in a coma. I don’t know how I faked that you never know… I guess but the reason they said it was because I woke up from seizures to fast, I knew to much about seizures comas feeding tubes central lines and medical things. I was seeeking attention they said.
Well I’m autistic I can tell you about a lot of things I don’t even care to know about but I don’t forget facts if I hear it normally I’ll remember random things.
I have a very high level of brain activing going on at all times. I’ve been this way most of my life, I stare off and can answer what you said all the sudden even if I had a seizure but here is why I have high brain activing
I didn’t know I was being so different
During an eeg I had for about 3 days I was shown to be having a 5-30 second seizure every few minutes.. so truly if you think about it I came to fast from a seizures because I’m normally having a seizure so my personality is basically me seizing so my normal is not normal.
I was talking fasting and just kept talking for 40 minutes my dr saw on the eeg I was having a seizure for 40 minutes non stop I was aware but I wasn’t in control.
In June of 2017 I was put into the icu after I had had a mini stroke, I was freaking out crying to my parents not because I had a mini stroke no I was horrified that the hospital was going to let me die. Because I’ve come so close before.
It’s never been easy but it’s never been harder to have doctors nurses medical staff to act like I’m in there way. Like I don’t matter. I fear one day I’ll end up in the ER and the doctors let me die.
Right now I’m not as scared as I use to be. The doctors I have right now have saved me instead of pushing me out the door to another doctor. None of them blamed my autism like many had over and over again. No they all worked hard to figure out what to do. I notice a lot that’s part of my problem it’s what my autism does for me.
My Neuro doctor never once said let’s see if this is autism no he said ok let’s get some Medicines do test do scans it all…
They found more then they knew they would. This year 2017 I have had about 4/5 seizures. I’ve had about five EEGs. A lot of procures and things.
The doctors kept trying and they did a good job.
I have a VNS in my chest which is a device that sends pulse into my brain to help calm my seizures or stop them all together.
I have a feeding tube in my stomach that goes into my small intestines.
A picc line in my arm for Medicines fluids transfusions blood all fun things..
But you know what? None of them took away my autism and that’s ok I know for sure that I took away the doctors power of my autism. It is not what they are allowed to blame. I am autistic. But I also have epilepsy, Ehlers–Danlos syndrome, eosinophilic esophagitis, heart defect, mast cell activation syndrome, MDS a blood disorder, asthma and more…
I hate mondays Fridays, I know what? Shay? How can you hate the weekend they are fantastic. One let me say I haven’t always hated them. And I still hate Thursdays more than I hate Fridays but for me I hate the idea of the weekend, that you have to go out and hang out with friends or if you don’t have plans then you are just going to die alone or become a cat lady.
I mean its not a big deal. I have been a nanny and my idea of a friday night was the parets going out and me making like 100 dollars thats my idea of Friday for a long time and when I wasn’t working I would sit in my living room watching TV shows or movies or I would be on tumblr for like nine hours.
So I don’t get where this you have to be busy on the weekend sleep in and go out and party or go to church on sunday. I don’t get it. I want to do what I do on a normal day. To me the weekend ends up normally being really boring and I don’t enjoy it because everyone is saying “Oh my I’m doing blah blah..” I mean even if I had a lot of friends who wanted to do stuff the weekend wouldn’t be when I wanted to hang out it would most likely be a random day.
But I want to say since my chronic illness kicked in over drive, the weekends end up being really hard on me. I feel like I am missing out on a part of live that I never knew I needed but I don’t need it. You might be someone in school or work the weekdays and when you get a free day its like fantasticness but to me it sometimes end up making me sad because I’m like I don’t have energy to do anything and its not going to change just because its the weekend sometimes I have good days but they are normally on a weird day like Tuesday and I get to make breakfast and go to the store, but my body doesn’t know that its the weekend. It does what it wants to.
So why am I telling you all this? Because I know that people with chronic illnesses might feel the same way, so if you know someone who has a chronic illness go over and watch a movie with them and don’t try and make them talk to much or anything just let them be but be there with them. It means a lot when you get a friend who can sit in the same room on their laptop as you and not talk but will say something like did you see this?
Or when we need to rant about shit you listen. Its hard because we might seem whiny but it really is that some of us aren’t around people. Don’t talk to people, and a lot of us don’t get to see very many people at all or only talk to people online.
The weekends are hard because its not just we can’t get out its that no one wants to stay in and no one wants to hang out with you.
When you are diagnosed with a chronic illness you normally lose half your friends right off the bat and it kills small parts of you. So yes, if you want to help make weekends better then just be there and say what’s on your mind.
My name is ShayWeasel and this has been a weirdish public blog post…
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…
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.
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.