Feeding tube awareness

Feeding tube awareness is important. O have a feeding tube. I’ve had them on and off for the past few years.

I have had NJ tubes which go into your nose and to your small intestines and right now I have PEGJ tube which goes into my small intestines.

Every day I wake up and make my feeding tube forumla the kind I use is called real food blends. I put it in a blender with water. I then strain it into a bowl then wash the strainer off and the blender then I strain it into the blender again then I wash the strainer off and bowl off and then strain it back into the bowl and then wash the blender off and strainer and strain it into the blender I then get my feeding tube bags that I use and put the mixed strained real food blends into the bag. I close the bag turn the bag upside down and put my fingers on the blue longer part of the bag and squeeze lightly to get the air out of the bag and then prime the line that will connected to my feeding tube the one that goes into my PEGJ that hangs outside my stomach.

It takes lots of work but I would be doing this even if I was eating. I do this sometimes 3 times a day depending on what my body handles a day.

I’m thankful for this that saves my life

Shayweasel out

Be jealous of all this..

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

I’m very sassy!

I’m beautiful!

I’m creative!

My parents are steve and Sherri!

My niece Rory knows more then you do!

My niece Wavey is a very fiery red head!

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

My nephew Carson is very excitebul

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

All dogs love me!

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

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

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

I am very good at finding my way around!

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

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

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

I have amazingly wonderful family!

I’m very good at sitting and talking!

I’m a great cook!

My friends are amazingly fab!

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

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

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

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

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

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

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

Be jealous of all this!

Shayweasel isn’t jealous!

realizing Relief Requires Relaying

I don’t like seeing others in pain. I don’t want anyone to ever have a battle in life even through we all do. I don’t want anyone to go through anything like I have. So when life gets scary I want to hold tight to my friends and let them know I’m here.

The thing is I’m not physically close to most of my friends. I see them lose there freedom. And then every time I see God.

I lived in Seaboard a small town with lots of people over 60… a lot of them little old ladies! I loved them all!! As I lived there my papa started taking me with him on his visits to their houses or hospital or nursing home. The longer we were there the more my heart fall in love with going to visit people.

I started riding my bike and going to there house sometimes sitting on the porch talking to them. They were always so kind.

I believe in God, I beleive He knew how to make my life. You can find the lines He put in place for me to be here!

I didn’t have a lot of friends my age but I got good at being pen pals at sitting in waiting rooms with family as they waited for their loved ones. I got good at asking questions so I could keep someone talking. I got good at being around pumps, wires helping cool weird foods and being kind listening and not getting annoyed when someone would tell me the same thing ten times. I felt calm. I learned how people are people no matter what we see. Leo Boone was a man who was paralyzed from the neck down. He was always smiling.

I learned animals are amazing at making people connect sometimes. It’s not that I didn’t already know these things I just learned more about them.

When I was in the hospital even if it was for me or someone else I didn’t mind I had done this before. People always told me I’d make a great nurse I normally told them thank you. Deep down I knew I felt something I needed to be.. and medical was involved.

My friends have health problems, my family does too. I learned and owe more to how God set my life up then any thing I can imagine.

I didn’t want to relay on anyone but truthful I have too. The person I have to relay on that each of us has to relay on is God.

People sometimes act as is you are stronger when you don’t replay on others. And truly it is you are stronger when you relay on others.

You will never be able to find relief without Realizing that it Requires relating on others. Everyone needs to be able to have others relay on them and others to relay on its a balance.

Shayweasel realizing Relief Requires Relaying

Why Having Friends With Illnesses Is Helpful To Me

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 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.

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  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.

   

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  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.

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  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

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..

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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…
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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.

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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…

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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…

The Trail Less Traveled is Full of Spiders

I woke up yesterday, and made up my mind that I was going on a walk. A good long one. I was going to do this.

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I packed my backpack with my purse a camera and some water. And I left on my walk. I had a rebound headache from the migraine I had the day before, my back hurt from my kyphosis, my allergies started to attack as soon as I step outdoors, but I was going on this walk that was for sure, I walked through the park I had walked to.

There was this trail that lead off the main trail I was on and it made me think about how the trails that are less traveled are normally full of spiders and bugs and sometimes they have animals that will attack you. I took this path because it seemed cool but I soon turned around when I saw the huge spider in the middle of the trail. But in life I don’t get to turn around, I either have to walk through the spider web or I just have to stand there in front of it, because turning around in life is something you can’t do, you can’t retrace your steps, you can’t go back to how yesterday was.

But you can stand in front of the spider or you can figure out a way to go around it, or you can walk through the spider web even through its gonna be hard to get that web off you and you might even get a spider on you. Or you can do what I normally do, grab something and pull the spider web down. And then walk through it.

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You know when you have any problem in life, if it be sickness, a death, a choice you have to make whatever when these things show up its almost like you can stand and stare at the spider or the problem or you can walk through it, you know its going to be bad but you can go through it.

Sometimes in life I feel like we go through almost blindly we don’t know we are walking on a path we sometimes get lost in the woods, but somehow we get back on the path after a while and sometimes its a different path then we were on before.

When I first became ill, I was lost in the woods for a year, I was sick and I was horrified, but I found this path about a year ago, and it was one I had never been on, So I took this path and I followed it mindlessly as the doctors and nurses told me they didn’t have all the answers, I then found some people along the way on the same path different parts, I found people like Aileen and Macy who had illnesses too, they let me rant about stuff and they had me laughing.

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This path that us spoonies take is one thats very strange to most people in the world mainly because they’ve never seen it. But through all the trees and all the daisies and through all the spider webs we handle this trail is amazing.

The sun shines so bright when it hits that one spot, and you start to like all the trees and you start to find things that make you happy, When you’re sick you find happiness in simple things, you don’t need everything you just want little things. Like those five dollar cookies or that lipstick or makeup or that one mask you wanted that was five dollars more than you wanted to spend.

I have walked through black widow spider webs that then sent me into anaphylaxis I have walked in the rain but the trees they made the rain less… This trail or road less traveled is full of spiders and ants and bees but its full of really rare beautiful things that on the road that is more so traveled they have beat to the ground because so many people have walked on them. I’m not saying its better I’m saying its different.

I know life is hard for everyone in different ways, everyone struggles with different things but every once in a while when a spider is in my way and I fall to the ground horrified of the spider, thats when I miss out but when I grab a stick and tear down that spider web, I know I did something.

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Its not easy but it never will be and I think part of me is becoming okay with that. I’m partly happy to be on this road thats been so hard to live…

Well… This has been Wesday the day where I rant about whatever it is that I please!!

 Come back on Friday for Shay-De foodie Friday where I give you recipes for food and on Sunday which is total randomness…

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  Shayweaseling it!

I Won’t Fail My Failing Body

 

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.

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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)