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

Why Having Friends With Illnesses Is Helpful To Me

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 The other day I told someone about my friends, this person knows me sorta well but not like super well the person was confused to why half the friends I talked about had chronic incurable diseases, She asked very kindly “Why do you have friends who are ill?”  And I tried to give a good answer but I didn’t do so well..

  So here is my answer…

 When you are in school you make friends who like some of the same things you like. When you are a working adult you make friends with people who like the same stuff you like. If you like going to clubs or going to see people perform you make friends with people who like the same. Its a human thing. You need something in common to keep being friends and to talk. When you are diagnosed or just become ill, you suddenly can’t relate to a lot of your friends or to anyone. But when you make a friend who also is ill you can relate, Oh you vomit four times a day? Oh have you ever done blank? Its a weird thing but you can talk about stuff that others would see as not socially acceptable.

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  My friends and myself talk about vomiting and getting stuff in a feeding tube, we talk about pooping and talking medicine and ports and picc lines and we talk about pain and walkers wheelchairs getting tired, we get it. And it’s because we understand it. I was in the hospital and I was FaceTiming with my friend Macy and she wasn’t weirded out when I showed her my picc line and when I vomit while we are talking.

   We need people that also have chronic illnesses even if we don’t get to see them a lot in person it helps knowing you aren’t alone. My friends and myself some of us have none of the same diseases and other friends we have one or two of the same diseases, but we all can understand each other on some level, sometimes just someone being able to understand the tired feeling is so helpful, when you are so tired but can’t sleep when pain sets in. it’s nice to know you aren’t alone.

   

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  Yea we talk about random things, I had a long text convo with my friend today and we talked about nothing but vomit.. it was on going for about an hour and it wasn’t like we were being gross we were just talking about our day. Life has a chronically ill person isn’t just watching netflix, it’s normally for me anyway watching netflix with a heating pad and vomit bucket.

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  When you have people who make you feel like it is okay to be well you. Is a very happy fact. So I guess I am trying to say the reason I have friends with chronic incurable diseases is because I need friends who can relate to me on some level. I need people to tell me “Are you napping?” “Did you take you’re walker?” I need people to make me feel like what I am living isn’t boring old shitting life but it’s a good life nonetheless. And my friends make me feel that way. They make me feel like we can press on. That every day is weird and random and pain is a part of every day but we can get through it. I think that when diseases make you feel horrid you know that life with this disease can be ever so changing.. Life has been fantastically amazing even in comas seizures and other things it doesn’t make it less just different..

  So yea…..

Shayweasing it…

11 Reasons My Downfalls Are Fantastically…

 I have downfalls and I personally like some of the things some people call my downfalls I’m learning to love… So here is a list of things I like that you call my downfall..

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   1. I feel all my emotions so deeply that sometimes it causes me to break down

I feel so much deep that some people say its the worst downfall of having autism but I love this about myself because it makes me have emotions that make some people wish they could feel. I love my emotions even when they are insanely off the chart.

         2 . I enjoy being alone

Some people say being alone is a bad thing but I seriously love being alone It’s enjoyable to me, but see when you don’t have friends to talk to and feel alone, I don’t I like myself I like being alone and just being..

  1.  I am good at knowing what I want all the time

I’m the easiest person to buy for, when you have to buy me a gift and ask me what I want I know right off the bat what I want and where you can get it. It also goes along with eating and drinking and talking to people if I want it. I do it get it whatever…

  1. I don’t enjoy all people

If I like you, you should take that as a good sign that you’re good because I don’t like everyone sometimes I just don’t like people and if I do like you then I won’t stop liking you.

  1. I’m straightforward and tell people off if they are rude

I have what some call a problem but I personally don’t I’m not scared to be like “Gurl… You are being a rude B… Get over it..” And normally the person looks at you for a good minute and then gets over it.

  1. I stand up for what I believe in because I have passion that runs deep

My passion can get out of control sometimes but most of the time it’s all like such a good thing because I am passionate about what I believe in and I always stand up for it.

  1. I’m not scared of what people think about me

I can wear purple tights with a bright green shirt and a skit that has cats all over it and totally think I look and feel fantastically and while some people put a lot of thought and worry into what they wear I’m not scared of what people think about me sometimes I worry about it but I’m not scared of it.

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  1. I care deeply about people I do like

My friends and family the people I love and truly like I care deeply about them, I want to make sure they are okay all the time and I want to know what’s going on in there life’s. I care.

  1. I’m not one to leave you once I love you

When I make friends and when I decided I like someone you’re stuck because unless you do something horrifyingly horrid I’m gonna love you forever and till the end of time. I will care about you and I will want to talk to you.

  1. I will forever be who I want to be

With not being scared of what people say I’m not scared to be fully and totally myself and I love myself.

  1. My chronic incurable rare diseases are a very good thing for me.

I am coming terms with my illnesses and I love my illnesses for what they have done for me… They have given me friends that are fantastically, I have had the chance to do things that I personally didn’t want to do but I’m glad I did them. I’m blessed…

I don’t need to be perfect I just need to be me…

This post was inspired by the song Love Myself By Hailee Steinfeld here is a link to the video https://www.youtube.com/watch?v=bMpFmHSgC4Q 

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