Feeding tube awareness

February 9, 2018May 5, 2018 / Shannon DeRose / Leave a comment

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

January 18, 2018May 5, 2018 / Shannon DeRose / Leave a comment

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

Death by Autism

December 27, 2017December 2, 2018 / Shannon DeRose / Leave a comment

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

I’ve always been around “different”

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

I didn’t know I was being so different

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!

Why Having Friends With Illnesses Is Helpful To Me

September 9, 2015September 9, 2015 / Shannon DeRose / 3 Comments

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.

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.

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.

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…

To The People Who Say I Talk About My Illnesses To Much

June 26, 2015 / Shannon DeRose / 2 Comments

On a couple different occasions people have told me I talk about my illnesses too much..

We need to go back, to a moment….

When was the first time you heard about autism? How did you learn about peanut allergies? What was the first time you knew what Crohn’s disease was? What about cancer?? ….. Who told you these things? And if you say you read it on the Internet..

Then someone had to talk about it for you to read it.. Someone had to write the words you wrote. Someone had to discuss what was going on inside their own body or someone close to them..

These things NEED to be talked about, how many life have been saved since people started talking about breast cancer? How many earlier screens have saved a life? How many people have known the symptoms of meningitis and knew when to go get help? How do you know to go to the doctor when you have the flu? Because you knew what to watch for…

Someone has to talk about these things for you to understand them…

People don’t know normally what is Gastroparesis is or what it’s like having 9 food allergies let alone 40 food allergies.. And the only way we can find a cure the only way we can get better is… By talking about it..

And on the other hand.. When I do everything throughout the day I must think.. Is this food safe? Did I touch something? Did I get up too fast? Am I having an allergic reaction? Is my headache my normal headache or something more?

My body is failing me, I can’t go throughout a day without thinking about it.. I am not talking about my illnesses because I’m bored or have nothing else going on but because no matter what I do no matter how I handle my life. My illnesses control part of it. I must think about it because if I don’t.. I could kill myself. If I touched a walnut if I wasn’t paying attention to what I was eating, if I didn’t watch what I was doing. I could hurt even kill myself…

My illnesses don’t take breaks, my illnesses don’t take days off, my illnesses don’t get magically better with medicine.. My illnesses without meaning to have to control part of what I do because I am living in a body that is broken but no way to fix it…

So yes I talk about my illnesses a lot yes this is part of my life on a daily basis if I didn’t talk about it you wouldn’t know what it was or what I was going through. You wouldn’t understand how easily a peanut can kill me or corn, a tree nut, or even some food that I didn’t crew well… Something could kill me easily and by talking about it it could save me…

There is this part of me that wants you to know that the main reason I talk about it, is because if we don’t talk about it because if we say nothing then nothing will change.. We won’t get treatment… we won’t get a cure.. We won’t get better life because no one will be doing research about what’s going on inside our bodies.

We not only need awareness we need understanding… We need help, because we need people to understand give us as much awareness as possible because then maybe we could save another life from pain and from being without a diagnoses and without help… Because people with chronic illnesses, rare diseases can go years in horrid pain without a diagnosis without any help, and without understanding…

So thankfully we have people who talk about rare diseases, chronic illnesses because maybe one day when I say I have EoE people will have as much understanding as they do for when someone says they have cancer..

I didn’t choose to get a rare disease I just got a few… So if I don’t talk about my rare disease no one will know..

So yes my diseases are sometimes the highlight of my life but it’s because it affects my life in every way…

Thanks for reading about my talking about my illnesses, diseases can be invisible, which is why they are called invisible illnesses, we must first understand that awareness is the key..

If you want to talk about this more with me, leave a comment or email me, we can discuss the horridness of chronic and rare diseases,

Shayweasel out…

Eggless Sugar Cookie Dough (Believe me its fantastically!!)

May 2, 2015May 2, 2015 / Shannon DeRose / Leave a comment

So… Its Shay-De foodie Friday!! And its the start of food allergy awareness month. Which means that I will be posting about it. Food allergies have been in my life since I found out I was allergic to cherries when I was a young child. But it didn’t change my life fully till I was 17 years old and my body was reacting to so much food.

I found out nine food allergies then. I now have gained more and I have over all about 22 food allergies, but thats putting some of them together. But yes I have food allergies, my body doesn’t like so many foods.

I don’t mind having food allergies, its hard to live with but its not horrible. Food allergies change your eating and it changes parts of your life but its just made me more fantastic then ever, and I love it. I don’t know why but they can for sure be highly annoying.

But since its Shay-De Foodie Friday lets get to the recipe part of this blog..

So here is the Recipe for eggless sugar cookie dough.. (This is just to eat not cook. I do not believe cooking it wouldn’t work, but I ate mine raw and it was fantastically wonderful)

1 ⅓ cup of flour (I used oatmeal flour, as we all know oatmeal flour is my go to flour.)

½ cup butter or butter

¼ cup raw sugar

¼ cup brown sugar

1 ½ teaspoon of vanilla (extract or from bean)

Instructions

Beat together the sugars and the butter till adorably fluffy or just fluffy if it doesn’t look adorable, do not be worried. I beat my together for sevens minutes.
Add the vanilla and beat for another minute
Add the flour slowly till all the flour is mixed in fully. It took me about five minutes to add it all and beat it.
Put in bowl, eat enjoy!!!!

I hope your week has been amazing and if you ar staying in this weekend then I hope its amazingly fantastic!!! Make this cookie dough and eat it and then feel fantastic unless your a spoonie with stomach problems then you might feel like horridness afterwards if this is the fact then.. Well I understand.

Thanks for reading this has been Shay-De Foodie Fridays if you would like me to make something center let me know in the comments below!!

Shayweaseling it!

I Won’t Fail My Failing Body

April 29, 2015April 29, 2015 / 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.

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)

Choose To Be Healthy

April 26, 2015 / Shannon DeRose / 1 Comment

I’ve had different illnesses since I was a child. My body has never loved me. But neither has my mind. I know things about life that most people don’t even know. Because they live a life where their minds, brains, bodies and health is just something they never think about. “healthy” to most is a choice, they can choose to eat healthy food, they can choose to go on a walk for their health. But for me “healthy” was just nothing, it was just not a choice, my health has never been good, never horribly I’m about to die, but its never been good. Its always been something that I’ve had to think about through.

My brain, its always failed me. No matter how hard I would try my brain was not what I wanted it to be, or what everyone else felt it should be. But a few years ago when my brain turned fully against me and basically tried to kill me, I knew my life was going to be different after that, I knew I’d have to accept the fact that my body, my brain, my life was not going to be easy and that everything I could possibly do was be alive.

So the strange question at hand is… What is healthy? What do I see for my future and how do I want to handle my health? My life? I want to be alive, thats the first thing. But I want to be awake and I want to be able to live happily and beautifully.

My body doesn’t seem to always enjoy doing things its suppose to do like eat food or make the necessary hormone my body needs to live. So I could choose to be upset or happy but I could and have choose to just have emotions and live as I please.

Today I was riding in the car with my sister and a few of her friends, her friend said jokingly as he smoked his cigarette that he was only going to live till he was 50, because of all the smoking and drinking and partying he is doing now. But I knew in my heart that those sometimes or people like him or my moms biological father they are the ones who live while people like me and so many others we might not live to be 50, I’m not saying I won’t live I’m just saying I might not because of my health and its not because I don’t have the choice to either eat healthy food or not smoke or go for a run, but I don’t get to choose my heath. I barely get to choose my treatment, but I get to live, I don’t know how long I will live, I mean I could live to be 100 years old, so many treatments are available and become available all the time.

What I’m trying to say is that if you can choose to be healthy, choose it. Because I don’t get that chance, and so many people like me don’t. And its not fair. So take care of yourself, love yourself, take care of your body, and health. Because you can lose it in a day. Or like me you can’t lose what you never had.

I’m happy I am, this blog post might not make sense, But I am Shannon DeRose this is my randomly rantingness. Thanks for reading.

Best Chocolate Chip Cookies (Gluten-Free, Corn-Free, Nut-Free)

April 24, 2015May 2, 2015 / Shannon DeRose / 2 Comments

Now if I’m being honest, I’d tell you that I love eating cookies, and I do it so much that I’m pretty sure I’ve found ways to make my oatmeal taste like cookies.

And if you give me a cake I’d be like I’m good, because its not cookies, so since I love cookies so much. When I was told that I was allergic to a lot foods, I had to go out and find ways to make different things.

Cookies being one of them. Enjoy Life chocolate chip cookies have been a lifesaver because everyone knows I want chocolate chip cookies. So I use those a lot and oatmeal. I mean man am I blessed to not be allergic to oatmeal, I do love me some oatmeal

But back to cookies so a few days ago I was wanting some chocolate chip cookies and I wanted them bad, so I pulled together everything I had to make them, and I, being me, was trying to find a recipe to work with and I couldn’t find a good one till, well, today. I found this recipe and I had to change it a tad, but it works and the cookies I made are so amazing.

So here is how you start off

Ingredients

eggs – 1 full egg and 1 egg yolk.

2 ½ cups flour (I used one and ¼ cup oatmeal flour and one and ¼ cup tapioca flour)

½ teaspoon baking soda

1 cup Brown Sugar packed

½ teaspoon salt

1 teaspoon vanilla extract

½ cup raw sugar (you can use white sugar I used raw)

¾ cup butter (I used dairy butter but any butter works.)

2 cups chocolate chips (I use enjoy life chocolate chips)

I preheat the oven to 325 degrees F (165 degrees C) line cookie sheet with butter or cooking spray or parchment paper, I only had butter so I used butter and they worked good. (I basically just put butter all over the cookie sheet)
Sift together flours, baking soda, and salt, set to the side.
In a bigish bowl I used my kitchen aid that makes everything easier. Butter that has been at room temperature for a while (mine was about two hours) and sugars together, I let it blend together for about 5 minutes to get that creaminess I feel it works better.
Add vanilla, egg and egg yolk and beat until well blended, (I let my eggs sit at room temperature for a little while you don’t have to do this step but I think it helps.)
After the eggs and vanilla are really well mixed together add the flour, baking soda and salt, Now be careful not to add it to fast. I add it slowly and then just till its blended then add the chocolate chips and let sit at room temperature for about ten minutes if its still kind of not right looking let it sit longer.
Put on pan anyway you please and then bake for 10-16 minutes my cookies happen to be big so they cooked for 16 minutes.
Let cool and enjoy!

So that my best chocolate chip cookie recipe!! I hope you all have a good Shay-De foodie Friday!

Come back next Friday for more food recipes and come back Sunday for randomness and come back Wednesdays for Wesday the day where I rant about whatever I please!!

Why weekends are hard…

April 12, 2015 / 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