Every now and then when I look back on my life I get fully freaked out how much God step up my life. How this and this happened s o I could do this and this and so on. I see where the bad choices I made that God used them for the good. It’s amazing and totally creepy and mind blowing.
I moved to a boring seeming town of a seaboard you can’t get the sea but you can get the bored…..
I was 13 when we moved my papa was pastoring the church and for the first time he had more time to hang out with us and do stuff as he had been working a few jobs at a time most of my life. When we moved there he didn’t have to work another job but pastoring is more then a job.
But anyway my papa started taking me every now and then to visit people in the hospital, nursing homes, Home bond people. I enjoyed being with him and visiting people.
The town was small and I loved to ride my bike and would go and sit on the front porch with the elderly people from the church and basically it’s easy to know all 700 people in a small town in the edge of no where, I would sit and talk and talk.
When I was 15/16 my sisters Sam and Vana moved out of the house to go to college and all the sudden it was just me and my parents. I went to almost all the hospitals and nurses homes with either my mom or papa, and talked to everyone it helped me learn to talk better to people. It helped me never be scared of the hospitals something I had never really had a problem with before.
But mainly I learned how to handle boredom and how to handle having no one else my age. I learned a lot. And God set it up.
But the Down fall of this all was I loved all this people but I had to watch so many die. I cried a lot. But it helped me. I went to over 200 funerals in the course of 6 years I lived there. I watched my friends died it didn’t matter that they were 70, 80, and 90s years old but they were a blessing to me. My teen years were spent in the best place for me.
God knew how bad I am with teenagers. I’ve never understood them. And didn’t want to be that way ever. I was never fully like that but I did things wrong after we moved. I cry thinking about it now but that’s beside the point.
How does this help me now days?
Well I don’t mind watching tv all day. I don’t mind going to the hospital to visit people (not as much for my self) or having to wait for hours because I can find ways to deal with boredom from reading, writing watching TV movies talking to strangers learning new ways to think making up or writing books and stories.
I learned to handle death well. And sickness. I’m better in scary or life threading moments. I’m good at calming others down. Now calming down myself is different I learned to put my emotions aside and think of others more.
Now that’s one explanation but there are so many more ways God set up my life. I’ll tell you more later! Today through that’s it.
I’m not perfect or awesomely good. But God is still working on me. And I can wait to see what he does next.. because God really likes to freak our family out..
Thanks for being you and reading this!
Shayweasel being set up
I love movies! I am a self proclaimed movie buff and am proud of it! Here is a list of my favorite or best fast paced underrated movies
1. The Crazies
Why I love it is because it starts off fast it’s oddly original and if this happened in real life it would be so horrifying which is just what they are going for.
Why I love it is the movie is fast through all of it! There isn’t a lot of back and fourth going over your plan stuff. It’s a great way of making it too and the fact that the main stars are like five people makes it even better because you feel like your in the car trying to get your son back.
Why I love it the movie like the other two is fast pace, fast talking, quick thinking, roll coaster of amazement! It shows humans at there best and worst.
4. Stay alive.
Why I love it is it’s fast pace it’s funny it has a good story line, the video game is amazing in so many weird ways I love the history part of it and that you feel like you know each person in it well. And again it’s so funny.
Here are four and there are dozen more! Let me know what you guys think in the comments! I love movies and I’ll keep watching them!
I know for some people who haven’t had to deal with rare diseases might not know is why it takes so long sometimes to get a doctor to diagnosed so here is 7 reasons to help others understand. And rare diseases people to relate to.
1. Doctors rarely remember the 1 of 7,000 rare diseases they learned for nine minutes or less in medical school.
2. The main symptoms of a lot of rare diseases can manifest in different ways for each case of the diseases. One person can have FOP (rare bone disease that my best friend Jazzy has here’s her blog to learn more Jazzy blog ) and turned in toes a birth at birth , while another might not.
3. Rare diseases can have the same symptoms as some more common diseases, but they aren’t caused by the same things.
4. Misdiagnoses can cause damage to a rare disease if the treatment or the seriousness of the disease is lacking or harmful it can kill people.
5. Rare diseases have different kinds of most of rare diseases.
6. Their isn’t always a test for the disease and sometimes is that it’s nothing else so it’s this disease, and sometimes the test isn’t done in the hospital or Drs offices close to you.
7. Rare diseases have short time limits on some making diagnosing them before death hard.
The thing about rare diseases is that the rare part effects every part of it. The rare and unknown May never be known. And coming from someone who has been slowly learning more diseases it takes forever to find out what’s wrong sometimes and sometimes when you find out you wish you wouldn’t have.. but sometimes finding out no matter the cost is the most important thing and if you give up you might miss out… on life.. on living.. on being alive. So don’t give up. Fight. And keep trying till you find a doctor who will find out what’s wrong a doctor who will help you after you find out and a doctor who will keep helping you stay alive no matter the cost for the doctor find happiness but keep Joy close..
It is worth it…
Shayweasel knows some of my rare diagnoses because shayweasel didn’t stop
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
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 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 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
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
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.
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!