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…
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.
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…