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

Death by Autism

Life threatening …..

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.11th birthday party in 2003

I’ve always been around “different”

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…

Shayweasel is still autistic!

Restrooms of the public kind…

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Let me just take a moment..

Public Restrooms suck. They are so weird. Okay but lets break it down.

(Also I don’t take photos of public restrooms so here is a photo of trees… That has nothing to do with my post, but I wanted to add a photo.. Deal with it.)

There are different kinds of public restrooms. You have your store public restroom, restaurant public restrooms ,  chick-fa-la restrooms gas station restrooms, and then we come down to.. Beach public restrooms. I was at the beach the other day and beach restrooms, are some of the worst things. I mean they are dirty, people are undressing and they smell weird, and its so gross. Just no.

Lets move on to another thing about public restrooms..

So you walk in the restroom and there is a line, but you have to pee really bad, you wait your turn and then an some random person walks in and just takes the restroom when you have been waiting, maybe this doesn’t happen to other people but to me it happens all the time.

Oh the people who talk on the phone in public restrooms, what on earth? Why are you talking? Like shut up and go pee… Don’t talk on the phone its awkward for everyone else going to the restroom.

The handicapped stall, so when I’m with my niece who is 3 I will use the handicapped stall because its hard for us to both fit in the small restrooms, but I try not to do this all the time, but I hate when all the stalls are open and some normal person goes into it. I’m thinking what is wrong with you? Why must you use the handicapped stall…. And I mean if you have a chronic illness and you need to use the handicapped stall go for it. And I normally try to give people the benefit of the doubt, because you never know and someone might have an ostom bag and need to change it or dump it. You never know about people so.. Just don’t judge.

Also when you go to wash your hands and there isn’t any soap or papertowels or when there isn’t even a bowl dryer and you washed your hands and are standing there with nothing to dry it on and you’re in shorts and everything is bad… Just bad.

Oh when you go to the restroom and someone is waiting for someone but you stand behind them even though you see that stalls are open but you just go oh it must be dirty because this person is just standing here, and then they tell you after a few minutes and you just…. Ugg….

When you run out of toilet paper in public restrooms… Thats.. That is just bad…

Vomiting in public restrooms is annoying.. Its just annoying well vomit over all is just annoyed.

Oh weird people in public restrooms the ones who just start talking to you. They just start talking…

Over all public restrooms are a strange thing to deal with.. So as you use the public restrooms this week think of me… Wait I take that back that sounded awkward..

This is randomness about public restrooms want more? Come back on Wesday Friday and Next Sunday…. Its always random… Just yea.

(This idea behind the post is thanks to awesome Macy go follow here on twitter @missmacy1023 ) 
Shayweasel out.

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)

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.