be you

It’s been Confusingly Complicated

/ Shannon DeRose / Leave a comment

It’s been a long time since I wrote. I find it hard to explain what’s been going on. It’s confusing weird and totally unnecessarily complicated. So since I don’t know how to explain things I just don’t say anything. I don’t write as much I don’t text as much or post as much.

Sooo here I am trying my best to explain things.

Last year my main doctor over my care was unexpectedly moved.

Since then I have not really found a doctor to take over. So it’s been hard. That doctor advocated for me. Explain things stood up and got the things I needed done.

Now he did above and beyond what he was supposed to do. And I do not expect in the slightest for another doctor to do that.

In January my psoriasis started getting worse and ended up caausing some issues around my Hickman central line (basically long term iv) and getting it replaced was what we knew I’d need in the long run but the doctors didn’t want to mess with me. Not having the doctor to tell the other doctors how important this was. Made it hard.

And as the line got worse and worse. The Place I had gone it get my care for my line for years got overwhelmed and confused by all that was happening because I hadn’t found someone to be able to make the doctors talk to each other on what to do! Which isn’t truly the fault of anyone there just how the medical community works sadly.

In April after waiting months I had surgery to replace my Hickman during surgery they couldn’t seem to be able to put the line in easily at all. Due to having vascular EDS my veins are slow collapsing into them self and/or splitting into smaller veins that basically lead no where. And because of this things like central lines have issues getting through.

The surgery put a Hickman( the longer team iv thing) in but couldn’t get it where t was suppose to be not deep enough in the vein. And it was extremely painful.

After a few months till they could get me into a different surgeon once I got in they decided to do another surgery and remove the old line and place another.

Well that surgery was suppose to be 30-45 minutes and it ended up taking over 2 hours. I was able to go home after what seemed like a short time in post op recovery.

The Hickman hurt weirdly so when I got out of surgery. But after using it at home it hurt. Badly. My breathing then started feeling like I couldn’t catch my breath. It was then my papa was like we got to go to the hospital. And when I agreed my parents knew something was wrong! Hahah

So at the er they were busy the doctor ordered an X-ray. And the X-ray tech using the portable X-ray took a few X-rays of my chest side and back. She seemed worried and that was worrisome.

But when a man comes in and says the dr ordered a ct made both of us kinda worried. After the CT scan within five minutes of being back in the waiting room someone came to get me.

The doctor would then come in and tell us that my Hickman wasn’t in a vein. It had somehow wasn’t where it was supposed to be. I was admitted.

We all decided to try and put a picc line for the time being. They had a hard time putting it in my veins are very thin and they move around a lot. There isn’t much or any connective tissue holding them in place.

After they put the picc line I went back upstairs at the hospital my picc line stopped working. It turned back in on its self.

I had to get it replaced the next day. And was able to be discharged which was a blessing!

But less then two weeks later my picc line stopped working. My doctor told me to go to the duke ER and so we drove the 3 hours there and then we got to the er at 2ish on a Monday and we left the ER at like noon on Thursday. I was in the ER the whole time. In a room with a curtain and in a busy area…

Horrifyingly this wasn’t my worst time in the ER

But during those 4ish days I had 3 picc line fails two tries in one arm and one in the other meaning they couldn’t get them in. Two Hickman line in my chest that they couldn’t get in. And then the last ditch effort came in…

A Hickman placed in the very top of my leg. It’s a very interesting place to have one. It is weirdly in the way more than I would have thought.

Like simple things.. dogs or children sitting in your lap making sure they don’t pull or mess with the central line on my leg.

Leaning against the counter to get something or to rest and your line is right at that level. Wearing shorts tbhe line with dangle and that makes it hard not get it caught on something.

When I need to give myself medication in to my line I’ll either have to pull my pants up if I’m wearing shorts or lose clothing or down. Unhelpful and weird in some situations.

But it works. It’s what I need to survive. We don’t know what’s gonna happen just yet but we do know that my body won’t stop getting worse but we will become better at handle it.

The psoriasis is dangerous and confusing. And the eczema is itchy and painful. so what’s the plan from here on out?! Confusingly it’s trying a different medication to see how that works.

It’s confusing because they still don’t know what cause it to get so bad. And we don’t know either but I started a new medication which is an injection every other week. We will see how this goes!!.

Having a chronic disease makes you have to learn to accept the reality of the disease. I know my body will get worse as my disease progresses and it’s up to me to handle this with joyfulness and kindness.

I don’t know what’s gonna happen and I feel like this is confusingly complicated and have no clue what we will do next or what is gonna work. But I leave it in the Lords hands

Sooo here we go…

Shayweasel is confusingly complicated

But thankful!

Nala is adorably wonderful!
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It gets worse but you handle it better.

/ Shannon DeRose / Leave a comment

Life is weird and I’m ok with that. I think so anyway….

I have a habit of not wanting to say things are bad. It’s a good habit to have but not always a helpful one.

It’s not like I deny that things are happening it’s that I don’t want to bother people with things.

I think sometimes I’m doing great! I’m stable and then my body decides that it doesn’t like that and I trip and fall and leave a bruise for two weeks that’s concerning and then I remember that my body is getting worse.

My papa and myself at the beach

My disease is progressive and it will always be getting worse one way or another I will become worse.

and that this is hard to handle. I think back to almost ten years ago right before my nose surgery to clean my Sinus and remove a bone that wasn’t suppose to be there. I think about how confused and unsure of how or why my body was so weird.

But how after the surgery I knew things were never gonna get better. I know my body was gonna kill me.

As the years have gone on I’ve slowly seen the progression of my diseases become worse. Small things like eye sight getting worse or Small things like not being able to orally eat much. It seems to lose at least one or two foods every now and then to come down to only really being able to eat bites.

Somethings have gotten easy but also harder. I use to need my wheelchair every time we went out. For a few reasons ones mainly because I use the wheelchair for one of the big reasons because I had so many seizures that I was falling every time I had one causing more problems than ever like once being on the pavement in a Target parking lot and your parents not being able to get you up and into the car and having to have a stranger who just asked if we needed help! help your dad get you in the car.

The seizures have lessened because of my VNS which is my Vagus nerve stimulator. Which is a small device that is wrapped around my vagus nerve in my neck/chest on goes to my heart then other goes to my brain.

The device is like a pace marker for your brain. It goes off on this small pulse every 90 seconds. It has a pulse that goes off that’s higher whenever I put my magnet on my VNS.

Now the highest plus goes off whenever it feels a seizure of some kind happen inside my brain/heart and that one goes off for a normal person (well normal person who has seizures and happens to have a VNS) is around 20 to 40 times and that’s a bad number to them.

Mine goes off over 200 times every day. So without the VNS I’d most likely be having over 200 seizures a day. So yes my VNS is something I love and am beyond grateful for!

I know that the seizures, the diseases that have been slowly killing me. will never go away. And that they will get worse.

But I don’t have to use the wheelchair as much now. I can walk more. But I don’t go out as often. Partly because when I do it’s an event and I can’t do much the next few days…

I don’t have to use my epipen as much as I use to but I don’t do as much as I use to. And I’m able to get my IV Benadryl like I should be there are times when we have trouble getting it but it happens less often then if use to. But I don’t eat as many foods or eat food orally as much. At All.

All my nutrients come from my feeding tube.

My body has issues with getting sugar from my feeding tube. I got to hear the best thing I’ve ever heard a doctor say “your gonna need to try and eat more sugar and salt orally as much as you can!”

I was like I will make that sacrifice! So hard to do. But ok doctor I will eat ice cream every day!

Do I miss eating normal foods orally? Yes. Of course I do. But now it doesn’t seem like a big deal to not eat them.

It has just became something normal. I can go to a restaurant sit and not eat and I don’t even give a second thought about it!

I don’t think I’m better then I was. I’m just learned to be better at handling it.

I get hurt more often then I use to. By that I mean I fall more my hands do this thing which is considered a seizure which I didn’t know for a good while but my hands do this thing of dropping something my hand will just stay in the same position a few seconds afterwards. Now the most annoying thing my hands do is randomly throwing something. That one gets my last nerve like hand what are you doing?!!???

My joints go out of place a lot making me randomly fall. This past summer I got burned by an iron twice while doing crafts. The first one was a first degree burn the second was a second degree burn funnily enough.

I am constantly covered in bruises and things. I had to have two teeth surgically removed in September. because of how deeply my tooth was in the jaw bone

The top tooth on the opposite side of my mouth was a wisdom tooth and I broke it during a seizure an over a year ago. They had to cut into mg sinus cavity to get it out of my cheek bone I don’t understand how mh body even works

I’m saying all this to say it’s the weird things that happen randomly that’s what makes it hard.

It has gotten easier to remember to take my meds, to carry my backpack doesn’t seem hard now. It’s been basically a part of me

Don’t mind being home watching tv, baking, doing crafts, like making bows or crocheting.

My adorable dog Nala

I can do everything I’m supposed to. Everything the doctors tell me to do. And I know that I will get worse. My diseases will progress no matter what I do.

I will lose friends to diseases. Having friends who understand your health is always helpful but turns hurtful because you know they have the same or similar outcome as you do.

But as the years go on that progression doesn’t seem as scary. Doesn’t feel as hard to handle. The thing you learn is it’s ok to be ok with getting worse. It’s a good thing to learn your limits. Your life is hard but you don’t have to be fearful.

Getting my feeding tube changed out which happens every 6-10 months doesn’t seem scary anymore it’s more like just going to have a conversation with the people in radiology.

Me with My beautiful sister Vana!

Getting Hickman drsssing changed every Friday at the Rabb clinic (infusion center here where I live) doesn’t seem like a big deal it’s basically me going to visit the nurses and front desk people. The guy who drives the little trolley type thing that picks people up in the parking lot to take them to the front of the hospital. I see and talk to them all.

It becomes less of a problem to be able to do these things. It becomes scarier but that fear you now know how to handle. You learn to be ok to calm yourself when everything is going wrong.

You learn to be ok.

On the beach with my fabulous sister Stephanie!

It gets worse but you handle it better.

Because believe it or not everything can be worse and you can still find a way to be like Pollyanna finding the fabulous in the worse is the best thing to do.

I trust God. I can handle this because I have the Lord and He makes me stronger.

Shayweasel is worse but handling it better

And that worse is some of the most amazing things have happened out of it. It’s the best kind of worse I could ever ask for and I’m blessed to have it.

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Glasses on

/ Shannon DeRose / Leave a comment
I don’t have a lot of photos of myself so here is one with me and Rory

In movies and In books and Even in life I have seen countless times where the main dorky or weird person gets a makeover and the one thing they seem to do thw most is take off their glasses wearing contacts like somehow that makes them prettier.

And everyone is so amazed by this beautiful person they suddenly see with a new outfit and glasses free and pretty shoes!

They act like this person is so much more pretty then ever before. And then someone says it’s normally the main popular guy or girl or their old friends are like I liked you better before or wow I never knew how pretty you were.

The person then realizes suddenly how beautiful they were all along! They normally don’t go back to their old clothes or put their glasses back on sometimes they do but it’s like they realize suddenly how to be beautiful.

I never understood why you’d want to take your glasss off to look more beautiful. Like I know They might have contacts in or whatever. But why does that make them look prettier.

I think I look less sick with my glasses on then I do with them off. But more importantly the world looks so much more gorgeous to me with them on.

Because when I take my glasses off apparently the world thinks I’m more gorgeous. But the issue is with my glasses off life is a blur I run into things can’t see what’s ahead of me clearly. I have to look closers to see anything.

So while the would sees me more beautifully without them off, I see the world more beautifully with my glasses on.

I think we always do that. I think as humans we see the world is prettier without thinking that the world sees us beautiful or not.

Because when you don’t let what the world wants us to do or be or anything things are easier to see we can see inside ourselves easier when we can see everything outside ourselves clearer.

But when we only care what the world things we can’t see things clearly. We are all blind to the world sometimes when we try to do what everyone wants us to.

So I might not be beautiful in the worlds eyes with my glasses off…

The world is so much more beautiful in my eyes with my glasses on!

Shayweasel is keeping her glasses on…

How To Handle Having A Caregiver

/ Shannon DeRose / Leave a comment

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 Won’t Fail My Failing Body

/ Shannon DeRose / Leave a comment

 

Today I ate lunch and then as my disease made up its mind that this food I had taken into my body was not going to stay, I went to the restroom and vomited, a few times. I tried not to make it a big deal or anything.

When I came out of the restroom, a lady stood there just looking at me and she said “Are you bulimic?” there are a few things about this question, one if the answer was yes that is not the way to ask a stranger in the restroom. But I answered “No I have a disease called gastroparesis my stomach is paralyzed and doesn’t work the way it should.” she then went “Oh well why do you have it?” I hadn’t ever had someone ask me this follow up question before. I answered “They don’t know the reason why. It might be genetics.” She followed up with this “Maybe you just haven’t taken care of yourself.” She then left the restroom and I stood there and looked into the mirror.

My collarbones have become so much more visible, its not by choice believe me. My legs are thin, my cute round face is less round theses days, even though I have a little left of my moon face from the meds a few weeks ago. I stood there and thought.

Its not fair to me, because I have a chronic illness that people feel the need to either tell me how to heal myself or tell me that I’m not taking care of myself. If I had cancer I would be brave, and cancer is hard to face, but I don’t understand why the fact that I “just” have a chronic illness that I should just deal with it. It doesn’t seem fair. I was born with illnesses and more illnesses have attacked my strong so strong body. I’ve been through more in my life health wise than most. I’ve had crazy days and I’ve been in a places where I had to make crazy hard choices.

My body is failing me. I didn’t fail it. I didn’t make myself sick. I just am sick. I’m okay with my illnesses hurting me but I’m not okay with people telling me Its my fault. I do not have cancer, no. I have an illness that is incurable. Its lifelong, Its painful. Its horrifying sometimes. I have things that are undiagnosed. I had a doctor straight up tell me that I’ll most likely be in some pain forever, and that he was sorry. I have had surgeries not many just two, I’ve had an air tumor in my nose.. What’s that? My doctors didn’t even know.

   So no I didn’t fucking give myself theses illnesses Its not my fault. You can tell me off when I’m vomiting in the restroom, but only if you will hold my hair and then give my toilet paper so I can blow my nose and get all the vomit out it. I didn’t make myself vomit, my body is not working. My stomach has just stopped. My doctors are working to either find a med that works or a feeding tube might come into play or I might have to do some other stuff that I truly just don’t want to do. I want to go and live my life. I really want to go on that long bike ride.

IMG_4631

I’m strong. I’m really strong, but you see me as an attention seeker in some weird public restroom, you didn’t ask my name, you didn’t tell me you were sorry this happened to me, no you blamed me. My body is not my fault. My mind is not my fault. The things that happen to me are not my fault. I only get to choose how I react to them. And man I’ve reacted damn well… I’ve done pretty good. I choose to wake up. I choose to keep going because I don’t see the choose to stop.

   My body is failing me, but one thing’s for sure, I’m not failing my body.

 

This has been Wesday the day where I rant about whatever I please. And today I ranted… Don’t blame me for my illness, I will not fail my body.

Thanks for reading~ Shannon DeRose (Shayweasel)

Why weekends are hard…

/ Shannon DeRose / 2 Comments

I hate mondays Fridays, I know what? Shay? How can you hate the weekend they are fantastic. One let me say I haven’t always hated them. And I still hate Thursdays more than I hate Fridays but for me I hate the idea of the weekend, that you have to go out and hang out with friends or if you don’t have plans then you are just going to die alone or become a cat lady.

I mean its not a big deal. I have been a nanny and my idea of a friday night was the parets going out and me making like 100 dollars thats my idea of Friday for a long time and when I wasn’t working I would sit in my living room watching TV shows or movies or I would be on tumblr for like nine hours.

So I don’t get where this you have to be busy on the weekend sleep in and go out and party or go to church on sunday. I don’t get it. I want to do what I do on a normal day. To me the weekend ends up normally being really boring and I don’t enjoy it because everyone is saying “Oh my I’m doing blah blah..” I mean even if I had a lot of friends who wanted to do stuff the weekend wouldn’t be when I wanted to hang out it would most likely be a random day.

But I want to say since my chronic illness kicked in over drive, the weekends end up being really hard on me. I feel like I am missing out on a part of live that I never knew I needed but I don’t need it. You might be someone in school or work the weekdays and when you get a free day its like fantasticness but to me it sometimes end up making me sad because I’m like I don’t have energy to do anything and its not going to change just because its the weekend sometimes I have good days but they are normally on a weird day like Tuesday and I get to make breakfast and go to the store, but my body doesn’t know that its the weekend. It does what it wants to.

So why am I telling you all this? Because I know that people with chronic illnesses might feel the same way, so if you know someone who has a chronic illness go over and watch a movie with them and don’t try and make them talk to much or anything just let them be but be there with them. It means a lot when you get a friend who can sit in the same room on their laptop as you and not talk but will say something like did you see this?

Or when we need to rant about shit you listen. Its hard because we might seem whiny but it really is that some of us aren’t around people. Don’t talk to people, and a lot of us don’t get to see very many people at all or only talk to people online.

The weekends are hard because its not just we can’t get out its that no one wants to stay in and no one wants to hang out with you.

When you are diagnosed with a chronic illness you normally lose half your friends right off the bat and it kills small parts of you. So yes, if you want to help make weekends better then just be there and say what’s on your mind.

My name is ShayWeasel and this has been a weirdish public blog post…

#spooniestrong #weekendssuck #fuckit

Internet people…

/ Shannon DeRose / Leave a comment

I have a problem. Its not that big of an issue, its more like well.. .Let me just tell you

I’m an internet type person, I enjoying the internet, I am not that social of a person, My sisters are mostly all very social.

They love people most the time, me? No. I can be highly rude and I sometimes would rather read blogs and watch youtube videos then talk to people. Yes this could be a problem. I like to say that this isn’t a problem at all, that this is totally normal, but lets take what I’m doing right now.

I’m sitting in a sort of dark room, my family is downstairs and I’m writing a blog post, yes I’m writing a blog post upstairs away from my family, while listening to Lady Gaga through headphones. I really fail at social things.

Today as we all sat in the living room I played YouTube videos that no one asked to watch on the TV using the chrome cast, but personally I know it seems weird that I’m not a huge social person but I do like how I am. I don’t think I’d change much about myself and the fact that I am an internet person is okay. I’ll stay up late watching YouTube videos reading blogs writing blog post and well sometimes making YouTube videos which I make private because I’m so nervous to show people.

I might not be social face to face, I might be shy and I might get upset when people don’t want to hear what I have to say but I like myself I’m weird as well… I’m just Shay

and I like that about me

My name is ShayWeasel and I’m an internet person if you’re an internet person let me know and we can be internet people together and maybe we can be awesome and weird as shit together from a far.

  So yea thanks for reading… I guess thats cool…

Its not “Just” the Internet

/ Shannon DeRose / Leave a comment

What people don’t get about team internet.

SO team internet, we are a random group of people, you have people like Grace Helbig who is having a fucking TV show come out this is a big deal, but what people don’t get is that every time I sit down at home or in a bookstore and watch a youtube video of Tyler Oakley or Mamrie Hart I feel like they are my friends, I feel like I know them. I laugh outloud and I cry from laughing so much. They don’t just act like they care they have things they care about Connor Franta raised money to build wells for people how fucking cool? Tyler Oakley raised money for suicide privitin. And Hannah Hart got people to work together in communities to help the world be better. I mean thats just a few what people or some people don’t understand is that we don’t just find people online to talk to and get in trouble with no…. we work together as an online community to make the world a better place to be alive in together. We want everything to work together. We want to live in an earth that’s more amazing than ever. I like the way we can work together.

No the internet isn’t always safe, there is a lot of bully and stuff but when you go to a youtube page, like scishow and you learn about something that in school you should have learned but you somehow you missed it or someone just didn’t talk about it. To me shows like Scishow make my life better, I love learning and people never took me (still don’t) seriously when I talk about science and when I watch these videos or have a convo in the comments it makes my world a little better.

What you need to understand is that team internet is not just a bunch of weirdness its an amazing platform that holds a bigger world than you know. Yea people are all different but the internet makes the world smaller and when I find someone that says something and I go you like the “vlogbrothers?” and they look at me like what? Thats what makes the world funnier and better because we are DFTBA!! We are working together to make the world less suckish.

My first time I got on youtube for real was in 2009 it was super late at night and I had this boredom deep in my sleepless soul. I watched a video by rhett & link and I laughed outloud in the middle of the night, my world changed I found people who lived in my state, and were making videos, Rhett & Link now live out in Cali, they followed their passion and they blew people away with the laughter of others. Thats what team internet does. They gave me hope that I could follow my weird passions even if my passion was just writing a blog post or making a weird video.

Its not that the world online is nicer or anything its that its just different. I remember when I found this girl with blonde hair and she was weird and she was surely random, Grace Helbig would become a youtube video I would watch all the time. I would laugh and I would giggle at all the weird things. I watched Juilian Smith and would not be able to stop laughing people would have no clue what I was laughing at.

I still go back and watch the video “Trees Hate You” because it makes me laugh so hard that its my goal in life to be able to be that random.

The internet and Team Internet and team DFTBA is not just a good thing its being able to say I’m hartosexual and someone going me too. And both of you being able to find a place and for me to feel like I can watch a video on the internet and I can maybe chase every dream I have.

People that make youtube videos we all know they start off really small, they make these videos because they just want to. I love being able to see Tyler Oakley and Grace Helbig on cable TV because they have been apart of my week for a long time, they have made me laugh and made me think.

I don’t think people when I say I watch Youtube videos I don’t think they get it that what real happens when I watch a youtube video mostly everyday and these people that I don’t know are like weird friends, they make me feel less like I live in a world full of people who don’t understand.

We are the people who will No we are changing the way people think, there are videos about coming out and about being true to yourself on the internet, we are team internet we are DFTBA we are amazingly fantastic and we will we are changing everything, the world needs people that understand the giggles of a miranda sings video and why I wake up 20 minutes earlier a lot of times to watch a Good Mythical Morning episode and why I like to sit on sundays and watch Danger Dolan and why when I don’t know how to do something I google it. Or when I need to feel like I am better than this I watch Sprinkle of Glitter videos and why I like the way I am because if I can be this random and no one likes me where I’m at I can be liked by some on the internet.

If you ever feel like life isn’t great or is very suckish then remember that people on the internet and all over the world are trying to make it less horrid. I know the world might not be great all the time and when people are rude or stupid you can get really mad but remember that people are working so hard to make the world less suckish. I love what Youtube has done for the world. Its brought us closer. Its made everything different in a good way.

 

You see the YouTubers you watch become friends, I remember when I found O2L videos and thought to myself these guys came together and made something wickedly random videos, they all made me laugh.

Youtube, people who blog… People who have a job through the internet is amazing. Just so you know, life sucks but we together can try and make it suck less…. Just like the vlogbrothers say

 

The world is made up of all kinds of people, let the world be better, and also let them be amazing. Life will get better….

 

I love finding people on Youtube like ServiceDogVlogs (Tatianna) who has the awesome videos and a great singing voice and she talks about stuff like shit people say to service dog handlers and you have people like The Clairty Project (Clare) who makes videos on what its like to be awesome with a chronic illness and she just talks she did theses reviews of red band society and made me want to watch the show so I could keep up with her reviews. Both Clare and Tatianna make videos on life with chronic illnesses. Its how you look at it. And they are amazing,

 

We are going to change the world, we are changing the world. We make everything so different and the way people start off real small give people hope that maybe we can all be awesome people, because we are all awesome person but every now and then we forget that we are awesome and that we make the world more amazing by just breathing in. People like Sam Pottorff I have randomly laughed at his videos but he also talks seriously about things and he seems so raw sometimes, as a lot of the YouTubers do.

There are things like VidCon and playlist live and all kinds of things because we as a whole make the world weirder more random and we are learning as team internet that we don’t have to agree on everything but we have to care and love each other. We don’t want hate and I think team internet will be the ones to change that. I think we will laugh as the videos we watch and all the blogs we read have made this world a more easier place to live. Its hard to know where to stand on everything but we have the world at our finger tips and its amazing. So here is to team internet and all the people who are all about being as random as fuck. This people is how you team internter YouTuber style, thanks for making videos keep it up

(Shout out to AConMann, Anastasjia Louise, Bunny Hopkins, The Clairity Project, ServiceDog Vlog,)

Health is amazing!!

/ Shannon DeRose / Leave a comment

when you get diagnosed with anything, you have some options, you can make up your mind that you are going to just “deal” with it. You can try and find a cure. Or you can make up your mind that you aren’t just going to “deal” with it or try and find a cure but you are going to have this disease or syndrome or allergy or other health issues and say “Welcome to my life.” It’s not that you want this illness or whatever to stay and hurt you, but you aren’t just going to “deal”

No I’m not battling any illnesses, I’m living and I’m blessed to have problems, I know I sound like a Pollyanna (overly glad person) but you can’t let something, like a health problem or something like food allergies and things that could possibly kill you.

Tomorrow I could go to the store and not purposefully touch a walnut on my way to the restroom and pass out from anaphylactic shock in the restroom and die. Thats a possibility. Its something that could happen. Life can kill you or it can make you scared to live or you can just live. You can live with anything.

WE as humans can adapt to anything, we will learn to be happy without anything. People die and we have to keep going on.

So you’ve been diagnosed with something that in time will either kill you or you have a possibility of dying from it. Think of it like this

Yesterday morning your great-grandma who was 105 years old passed away, you have to feel sad and go and lie her body in the ground. After you have lied her in the ground you have a strange choice, you can either go on or just sit and cry, so take a moment and remember what life was like with them and then get up and go on.

Walk the miles you want, do what you wanted to do before all this, but you will just have to do it differently, yes everythings going to change but its okay. Its good change. You will miss things you will cry moments of life will fall and you won’t get to be apart of it. But life can be fantastic.

Illnesses, health “problems” are just random things that happen, if you didn’t have this health thing or whatever you would have something else that would make you complain and make your life annoying. This isn’t going to be easy, I mean seriously nothing is easy. Which I personally am happy for.

It took me a long time to really understand how blessed I am to be able to understand people who have things that aren’t a bump in the road no they are a random hill thats really nice to have met along the way. I like my bumps, I like my holes, and I like the things that make my life hard because without them, I wouldn’t be Shay, I wouldn’t be okay with how much change can happen in a moment or a day or just a minute. Life changes everyday we have to deal with things.

 

I’m not right about half the stuff I say, but its what I think and what I think is what I think and no one else can think it for me, so if you don’t like it, then you don’t have to read it or hear it. I’m glad people are all different, I’m glad that we can life at stupid stuff that happens, remember that not everyone is out to get you. And that some are.

So welcome if you are newly blessed with a health issue, because this world is a beautifully artful place with randomness all over your face but it is amazing. Its just amazing.

Fantasticness of Stress

/ Shannon DeRose / Leave a comment

Some people handle stress fantastically, I have never met these people but I hear they are alive and well. I personally handle stress like someone has set me on fire while someone else is shoving rose coloured monkeys in my house which is full of bees. In simpler words, not so fantastically. You might think well maybe you should just learn to handle things better. Some things I handle well. Like death, and sickness, and being in hospitals, just being there for anything. I handle thoses things well.

But things like going into the bank to talk about money, total bee fest. And your boss yelling at you total rose coloured monkeys. I just don’t understand people. Me and humans don’t understand each other. Now give me a cute dog and life is all easy and good. Or  a small child. Things in those things are easy, but other times not so much. So maybe my problem is not stress maybe my problem is people. Huh, this could possibly be very true. I have panic attacks rather easily, or use to.

I haven’t had a panic attack in a while and I’m doing pretty good.. Anyway back to what I was saying is that stress and humans are a part of living a good and reasonable life. Its not easy but its a life. And its one that is worth living. Even through stress can happen daily and things badly can happen at any moemnt. People die and get ill and have bad days and things happen.

So how do you personally handle stress? I might have a panic attack or get mad but its strange, its when I started letting myself be stressed, feel the feelings I need to feel. When my grandma Rosa past a while back. Myself and my parents had gotten to my grandmas house at 4 in the morning and my aunt who took care of my grandma was there at the house and my grandma was at the hospital type place and at 6:45 am we got a call saying they had called 911 for my grandma so on less than 2 hours asleep we went to the hospital and I was stressed and tired, my grandma past that day it was a long emotional day, but how I handled it was strange. I just let myself feel sad. And feel the joy that she was in no pain. I let myself feel the happiness that I was there with her when she past. That I was there when she went from being here to being home. I was happy and sad and felt overwhelmed. But I let myself feel theses feelings and knew that it was okay, to feel this way.

That’s what I think is important in stressful life happenings, so if you lose your job, and if you let yourself feel the emotions of losing your job, the anger and the annoyness and the life over-ness and then tell yourself that you go this. I think thats how stress should be handled and thought about.

That no matter what you don’t know about life, we can live and learn to handle new things, life changes in the flash of a light that can send you into a seizure or it can send you to help someone or it can cause you to feel that the whole life is a hopeless place of worry and horror. But no matter how horrid things seem, learn from the stresses of life and move on. Just keep moving, stop for only seconds and remember, do not forget what has happened to you.

It might be the horror but let yourself remember the wonderfulness and beautifully fantastic things that happened that day in the sun or rain or when you fell and everything changed. Let yourself know how important everything in life really is. No matter how stressful we live life and no matter how easy center times can seem everything won’t always get better but we can make ourselves make things better. So I believe stress is an overload of emotion, don’t forget to feel the bad emotion and the good emotion. Let emotion in. AND feel it…