Death by Autism

Life threatening …..

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.11th birthday party in 2003

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

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…

Shayweasel is still autistic!

I’m Not Like Everyone Else Who Has Feeding Tube

Feeding tubes come in all shapes and sizes, literally, you have your NJ tubes those go up your nose down your esophagus to your stomach then to your small intestines. You have your GJ tube which goes into your stomach to and into your small intestines.

There are more lots more. It’s amazing how as humans can be feed.

Now don’t get me wrong but I’m not like everyone else with a feeding tube.. I don’t have it for the same reason they do. I don’t use the same foods/drinks or formula they use. There are dozens more reasons why.

But the main reason I’m not like everyone else with a feeding tube is because everyone isn’t the same.

We forget sometimes that millions of feeeding tubes are placed in people’s body.

I don’t know everyone’s story and that’s ok feeding tubes are a hopeful remind to me that there is always something to try and keep us alive.

When it comes to anything in life we aren’t the same. And that’s a good thing.

Be a tubie or at least be nice to a tubie! A tubie is someone who has a feeding tube(s).

Shayweasel is a tubie

Dear Stranger Things

I wrote a blog post last year about the flashing lights that happen so much in the 1 season.

Thank you Stranger Things! I noticed as I watched how little flashing lights and I love that.

I didn’t have to cover my eyes so much. I sat and watched them all and could rewatch this season over and over.

I’m so grateful for less flashing lights it means a lot to me. I watch TV I’m the person who can tell you everything about the walking dead..

Thank you for making this awesome show!! And keep up with the less flashing lights!

Shayweasel is most likely gonna go watch Stranger Things

 

 

 

abpve my bedside table I have a sign that my sister Stephanie and me found on sale a few days after halloween. at that time stephanie and my;f were frighting my diseases and Truly stephie was fighting harder then me. I was scared and worried. Stephie never stopped fighting. and i’m forever grateful for that.

 

But  bacl to the sign i rant and go into the trail with lots of stephies. Sorry focus I;m not always this bad at thinking hhahaah

 

‘living oue own Nightmare right here’ the sign now is above my hope chest/bedside table. I live in a nightmare of death, and never ending treatments and meds and tubes, but this [ast year after coming out of UVA a hospital who did horrible things to me. That sign ;iving my own nightmare right here was very much true the biggest fear had happened. i was crushed.

Myself and my parents moved together to beaufort a small town on the coast.

I look back to last year and I feel lke I can’t even believe that was me being so hopeless so scare and worried today I worry but my sisters even though we didn’t live together frougt for me my famil, my aunts uncles cousins all made me believe I could live.

 

My nightmare is still happening pains meds tubes drugs surgery shots and death are close all the time but since I knew I couldn’t get rid of it I started living with it. I am trying to make my nightmare a daydream a small happy moment of life.

 

I could never give up because I;m not the only fighting for me. instead of fighting with my family and friends and doctors I know am fighting with not agenst. I’m living my own nightmare and thats ok =.

 

Shayweasel out fighting peacefully and lovingly

Kneel before needing

As long as I’ve been a human I’ve had a relationship with God. I have spent many hours crying out to go through out my life. I have seen people on their death bed crying out to God. I’ve seen a still born baby in the arms of a mother who weeps to God.

But the thing I’ve seen less of is someone kneeling before God before they needed something. They didn’t drop to there knees and say how much they love their father daily. Not because something horrible has happened but the reason you pray more in the bad times is that when everything is going easily for you… Satan isn’t going to attack you if your not upsetting him going against his ways.

I’ve seen it through I’ve seen people kneel on there knees praying daily. My family is one of them.

Now you might go but bad people have stuff happen to them too. But sometimes it’s not Satan attacking them or that God hates them.

God gave us the Bible theses commandments to help us not hurt us. This is the safety protocol of God.

People who know nothing of the Lord and they have something bad happen or something of that matter it’s because when you don’t follow the rules you get hurt.

Over all sin is the reason for all the evil in the world. The cure for evil is the God. And you know when you get saved or ask God in your heart you might think everything is going to get easier but honestly it’s gonna get hard because sinning is easy and Satan doesn’t want you to follow God.

Back to my first point is when you only pray when bad things happen you miss out on getting to know God.

If that one person you have who only calls you when they “need” money a place to live then sometimes you don’t want to answer the call…. and God He always answers..

Shayweasel being deep out….

I’m a Drug Seeker, Because there are no drugs for my diseases

A will of power is sorta the way you have to live, you have to find a way to make the best of the stupidest thing the FDA has no treatment for me. But there are over 7000 rare diseases and so like guess what we are rarely finding cures or treatments for these diseases, its sorta like you go so long for looking for what is wrong and then to find out what is wrong has no treatment, no cure, and your parents your friends they have watch as their friend, their sister, their daughter they have to watch as the diseases that take these humans away because no one knows what to do.

I’m seeking drugs but not ones from the strechy gas station.

I am seeking help. But only problem is that sometimes the dr gives you this medicine and then you go to get the medicine filled and insurance says they won’t pay. So what are we suppose to do? How is this going to be ok. And sometimes this is the reason I end up in the ER or different doctors offinces trying to be able to find some to help me be able to live a full long life.

I’m seeking drugs that would help with all diseases. All rare and common. I want my friends, family, everyone really so they don’t have to be in so much pain t have to die with doctors who don’t even know of these diseases . So I’m a drug seeker till the day I die of a disease without treatment for my diseases.

Things you only hear parents of sick kids say

1. I didn’t find any drugs in your room do you know where they are?

2. We don’t have ice cream in the house so I’m going to the store now.

3. She has only had five seizures today so that’s good.

4. Do you have any needles?

5. You cleaned the kitchen? I told you not too.

6. We are going out be in the same place when we get back.

7. Oh no the dog is allowed in the ICU it’s a service dog.

8. Do you have (random disease here) I can’t keep track of them.

9. Don’t take a shower by yourself.

10. How many epipens did you use? Only 4 right? That’s a pretty good week.

11. We busy on fridays we go to the hospital.

12. I can’t seem to keep your wheelchairs seat belt from getting tangled in your wheels.

13. Yea she’s fine she’s just having a seizure.

13. Your drugs are in my room

14. Eat something that has the most sugar in it.

15. (Something falls and makes loud nose everyone in the yells “ARE YOU OK SHAY”