How To Handle Having A Caregiver

Here’s the thing when I typed “how to handle having a caregiver” into google I thought that it was gonna say things like letting someone helping you doesn’t mean your not an adult or they aren’t babysitting you and that this is needed those kinds of things but no this is what I found…

The articles none of them were pointed at the person who was sick, I find it so hard to have a caregiver to let someone help me.

I’m an adult and have to have someone come here and watch me?

As of 2018 I’ve become someone who has a caretaker, and a respite care worker. Two people that watch me most of the time. I don’t always know how to handle being cared for.

From the time your born you learn how to be independent. We learn to make sure to cry when we need something, we learn that being nice and smiling can help. That we learn to crawl to get something our selfs. We learn to walk so we can do things on our own.

We go to school so we can learn we do chores so we can be able to clean our homes when we are adults.

We learn to go use the to shower how to cook how to drive so we can do things all by ourselves.

As I get the blessing of living longer and longer I’ve been needing more and more help.

My respit caregiver is kind, and she helps me by really truly is here by just being here. With the diseases I have, it can change fast. I could hurt myself if I had a seizure if I had a a reaction. And so on so on.

I am learning to find this as a way for me to help someone have a job, to know this is ok

I’m learning to look at independence differently. To know I’m still an adult. I still need help but it doesn’t mean I’m lazy.

So how to have a caregiver- be kind, tell them if you need something even if you could possibly do it yourself but you know you shouldn’t, tell them thank you and be kind to them, if they make you feel uncomfortable say something to either them or the other people in your life. Think about them like the nurse on Monk solving crimes and someone walks around and helps him he’s still an adult. (We all know Natalie on Monk was way better then the first)

It’s not lazy. It’s not crazy.

Be kind be good be love

Shayweasel is sitting down

Epilepsy & VNS Awareness

I have epilepsy! I have seizzures daily, I’ve had them for most of my life.

I’m autistic so the doctors had told my parents that’s why I would stare off blankly a lot. Sadly that mistake the doctors made. It cost me a lot when I seized for 7 and 1/2 hours. And doctors didn’t know what to do.

I’ve been in five comas due to Going into status epilepticus for hours on in! I had strokes during these times, other times too.

My Neuro dr is one of the best doctors ever and I’m honored to have him as my doctor.

The first time I saw him I had a “stare off” seizure and from that moment on he never questioned anything. We did a 48 hour EEG which showed something far worse than We thought.

I was having a stare off seizures every two to three minutes at all times. My brain never stopped or went down to most people’s brain waves. It was utterly bad.

After medicine seemed to only help some the dr told me that he wanted me to have a VNS (Vagus nerve stimulation )

So I had surgery to place the VNS and I have had less seizures because of it! It’s been wonderful!

The VNS Pulse is what I have meaning it goes to my heart and brain. When my heart rate goes up it sorta like shocks my heart into a better rhymeth and/or lower heart rate. Same with my brain if my brain waves seem weird the VNS shocks it back into normal or more normal brain waves for me.

It’s amazing!! I have a magnet that if or when I have a seizure thatthe VNS doesn’t stop which happens and is normal some seizures are harder to stop then others. My magnet I carrying with me I can swipe it across my chest where the VNS battery is. It’s confusing I’m sure to people who don’t know what I’m trying hard to explain. Truly I don’t even get some parts of it either.. so I might not be as confusing as you but I am confused… (laughs)

The VNS has helped me sleep, and not sleep walk! I have been able to start reading and remembering reading!

Now this isn’t a fix all I still have seizures daily, I have between 10-20ish stare off seizures but you need to realizes that before this I was having seizures “stare off” ones every two to three minutes daily. So this is a big jump And I’ve been joyful too have this.

I will never have the VNS lead removed since it’s wrapped around a nerve that goes to my brain.

The tonic-clonic seizures I have aren’t gone they are fewer then ever but they shorter and not as bad.

I’m on a few seizures Meds and I have to be careful doing some things others wouldn’t.

Epilepsy is scary.. VNS helps meds help and amazingly enough a dr helps.

Shayweasel with magnet out..

Rare Needs More Care

Rare diseases have changed everyone’s life in one way or another.

There are over 7000 rare diseases, and only 5% of those have treatments, no not cures, treatments.

That’s all… barely any.. rare diseases in America affect 1 in 10 people, there are more people with rare diseases then Aids and Cancers combined.

All these diseases are horrid.

Rare diseases are more so misdiagnosed with a disease that is not rare. Most of the time it takes year, lots of doctors, test, biopsy, surgeries to just find out whats going on!

Some people stay undiagnosed their whole life.

Some people who have rare diseases die within the first year of their life.

The way I learned about my rare diseases started with in the first year till now. There are things we still don’t know all what’s going on in my body.

We knew my lungs didn’t work well that having a cold at two weeks old wasn’t good. That getting pneumonia every year for the first five years of my life. We knew being able to roll over at five weeks didn’t make sense.

Slowly we learn more and more. Somethings I was diagnosed with where rare others weren’t rare.

The rare diseases are scary because not many know what’s gonna happen, we barely know any disease but we have to keep trying!

Rare needs More Care

Bring awareness is so someone in the future doesn’t die because no one was looking for the rare diseases because they didn’t know they existed

We existed. We care for you. You care about the rare… we will keep living with rare diseases and most will die with rare diseases!

Shayweasel keeps living

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

Be jealous of all this..

I’ve had a few people tell me they are jealous I can stay home and watch tv all day! Or that I’m able to read all the time! To be able to eat a bunch of calories and not worry about gaining weight or that I’m so skinny! But honestly if your gonna be jealous of something here

I’m very sassy!

I’m beautiful!

I’m creative!

My parents are steve and Sherri!

My niece Rory knows more then you do!

My niece Wavey is a very fiery red head!

I have twin sisters who are way more beautiful then any other twins!

My nephew Carson is very excitebul

My best friend Jazzy can tell you everyone in our favorite tv shows names!

All dogs love me!

I know every episode of the walking dead! And I’ve seen it twice!

My best friend Macy is one of the funniest people I know and has a great heart!

My sister Stephie is selfless and kind and always gives her helping hand on anything!

I am very good at finding my way around!

I can tell you weird facts about anything! Facts you never wanted to know!

My sister Sam is a quietly loud person with a heart of gold and kindness flows out of her!

I’ve been to Washington state during a toxic stuff released into the air be jealous of that somehow..

I have amazingly wonderful family!

I’m very good at sitting and talking!

I’m a great cook!

My friends are amazingly fab!

My best friend Dara is amazingly sweet and the best gift giver I’ve ever known!

My mom can paint wonderfully!! She can sing more amazing then anyone I know!!

My papa is an amazing reader singer and funny and wonderful at speaking!

My sister vana is super smart she always keeps herself doing things for others!

My brother Sean is one to ask if you have any questions about sports and cares so much about everyone no matter what!

My best friend Josephine can talk just as much as me!!!

This is what you should be jealous about! Be jealous of these friends these family theses facts theses laughs!!

Be jealous of all this!

Shayweasel isn’t jealous!

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

It’s been life

2017 has been a wonderful year

This year my sister Sammiy, and brother in law Matt had a beautiful baby who I call bear! She is a amazing little Rae!

I got to go on a road trip to Texas first time doing so since before my coma in 2015.

Noodle Doodle the Tiny Poodle was adopted into our life!!!

After years and years of doctors saying my seizures were all in my emotions I had a 72 hour EEG which showed that I was having a 4-10 second seizure every few minutes because of this the other Doctors and neurologist had just seen that that was my “normal” brain waves or that I recovered fast when I had seizures but the thing is I was always seizing. I was always recovering none stop. I was diagnosed with a rare deadly epilepsy disorder.

I got to see my best friend Jazzy!! Who stayed for two weeks! I hadn’t giggled and laugh that much!!

I watched a lot of tv, Netflix, movies, and people watched!

I got to see my grandma and grandpa Trussell who I hadn’t seen in years.

I got to see My aunt Gale and Uncle Bud and talk and enjoy being with them in forever

My aunt gale and uncle bud are amazingly wonderful! They lost there house because of hurricane Harvey and they kept being worried about my parents car that was totaled during the hurricane. They lost their home. They are so selfless! I got to see God truly shine through there life’s for the kind loving and beauty both of them have. They have always opened there home to so many people. Taking care of my grandpa and my aunt Helen both of them working full time, grieving the death of their son Trevor, they kept going and they still do. I’m very thankful for the love, selflessness they have.

My best friends JoJo (Joanna Du) had a beautiful little boy named Cru!! Who I call Sheep!

My best friend AnnaJoh (Johanna) {yes both of my best friends who had babies this year are Both names Johanna and both had sons} Her baby Atticus who I call tiger!!

I had a Vagus nerve stimulator with pulse that has helped a major amount with my seizures and heart the VNS helps by sending pulses into my brain and to my heart to keep them under control!

I had a PEGJ feeding tube placed for long term use. The feeding tube has helped. I eat 16-24 hours a day I can do it in the shower while sleeping I can eat anywhere anytime!

I got closer to my friends my family my nieces and nephew!

God has blessed me so much!

My goal for 2018 is to make it to 2019

Shayweasel watching tv..