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 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 have a problem. Its not that big of an issue, its more like well.. .Let me just tell you
I’m an internet type person, I enjoying the internet, I am not that social of a person, My sisters are mostly all very social.
They love people most the time, me? No. I can be highly rude and I sometimes would rather read blogs and watch youtube videos then talk to people. Yes this could be a problem. I like to say that this isn’t a problem at all, that this is totally normal, but lets take what I’m doing right now.
I’m sitting in a sort of dark room, my family is downstairs and I’m writing a blog post, yes I’m writing a blog post upstairs away from my family, while listening to Lady Gaga through headphones. I really fail at social things.
Today as we all sat in the living room I played YouTube videos that no one asked to watch on the TV using the chrome cast, but personally I know it seems weird that I’m not a huge social person but I do like how I am. I don’t think I’d change much about myself and the fact that I am an internet person is okay. I’ll stay up late watching YouTube videos reading blogs writing blog post and well sometimes making YouTube videos which I make private because I’m so nervous to show people.
I might not be social face to face, I might be shy and I might get upset when people don’t want to hear what I have to say but I like myself I’m weird as well… I’m just Shay
and I like that about me
My name is ShayWeasel and I’m an internet person if you’re an internet person let me know and we can be internet people together and maybe we can be awesome and weird as shit together from a far.