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 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.
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.
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…
On a Tuesday in the winter of 2007 I went to the library with my papa, it was my home away from home. The Librarian who knew me by name told me I should read this book called Dreamland, By Sarah Dessen. I took this book home, and sat it in front of me. I had gotten four books that day, along with Dreamland, I just looked at this book, I wondered where this book would take me. So as any good reader does. I threw myself into the book, and when I came up for air three hours later, I was in love, with the story, the way the book played out. I finished the book and when I went back to the library that friday I went over and searched for any other books by this author Sarah Dessen, A book sat on the shelf, and I felt almost as if it called out to me, which I know makes me sound crazy, but I picked up a book called Just Listen.
I took this book home and threw myself into it. And I never came up for air. It was amazing, I felt as if I had known Annabelle and we were friends. Like everything she was saying was thoughts running through her head. when I finished the book. I sat for a very long time. I couldn’t get it out of my head. This book changed the way I had thought about somethings. I was amazed and still am by this book.
From then on I read Sarah Dessen’s books each one meaning something to me. Each one taking a part of me and making me better. When I saw Saint Anything was coming out I was amazed, I couldn’t’t wait. I was so excited I preorder the book I waited and then.. I was told it was back ordered, which sucked, but anyway..
I know when Sarah Dessen writes a book its not just going to be good, its going to change something inside you, it’ll make you think, feel, believe, and have way too many emotions the books she writes are hearts souls and you feel by the end of the book that you know this person.
Like they are your friend.
So as I still wait for Sarah Dessen’s new book, I know it’ll be amazing, because they always are. Sarah Dessen is one of my favourite authors and a hilarious person to follow on twitter, she is amazing. I love the books she writes and I love the way she writes them.
So this has been Surprise Tuesday!! Surprise its Tuesday which today means that Saint Anything came out and I still don’t have it. Go read it and follow Sarah Dessen on twitter because she is fantastic and buy her books and follow her everywhere else too.