PollyAnna Please Rise

Have you ever seen a movie named Pollyanna? Its about a girl who goes to live with her rich aunt after the girl pollyanna loses her parents who were missionaries over seas. Pollyanna believes there is good in everyday weirdness she believes you need to find the glad.

She calls it the glad game, the movie focus on how she changes the place she lives because she truly wants to be glad, and the people around her she shows how to be glad in a very little world that isn’t always so glad.

This ,movie is one of my favorite movies. I have watched it a lot. I love her. That is who i wanted to be like. So try. Everyday to be glad for the deepest darkest things I don’t want but you have to be glad.

Spolider at the end of the movie, pollyanna falls down off a high tree and she is unable to move her legs, she is paralyzed, but the town comes together as pollyanna becomes so sad that she can’t walk and she feels like this over, all the gladness is gone she feels. But the town pulls together and shows Pollyanna how being glad is always a choice, so she as she is sent off to the hospital has peopled lined up telling pollyanna she is amazing, she is joy within herself.

She doesn’t all the sudden walk. And the movie ends with a happy ending, thats not what happens. It ends happy with pollyanna being unable to walk but finding the gladness in not walking. In being yourself. In being who you truly are. Pollyanna finds the glad. She doesn’t stop believing in glad because she’s sick. She is ok with gladness being scary.

I    I am the pollyanna I need to be. I have to find gladness. Not find sad and be mad I will not stop my joy my gladness because my body is failing me. At least. At least I can be so glad that I am able to keep living with the most amazing world I have found gladness in scary times but I keep gladness all day..

img_8422

So anyone want to join me shay weasel in being a pollyanna? In finding gladness? Pollyannas please rise. I have faith in God that I that you can do this. God. He is gladness.

 

I am gladly Shayweasel.

Failing body image 

the past few years have changed my body in so many ways…. body image is an issue for most people but people with chronic diseases or someone who has been pregnant you know how much things  can change.

I don’t have control over my body whatsoever.  So if I lose or gain weight. If I get new scars, new things planted in my arm and chest. Having feeding tubes stick out of your nose and stomach.

Being sick is hard on your body. Body image is hard for each and every person on the plant.

Sometimes I’m more amazed that my body has endured all it has and still is trying to keep going.

I’m grateful my body is alive. But it’s hard to stay alive.

When I was depressed during my “dark” years which was right after I had been raped and a friend who was very controlling abused me badly. I wanted to hurt myself. I didn’t want to live my life like this because it felt to hard. But through the grace of God, my family , friends and the hard work I put in I was able to come through that depression and be ok.

My body is hard working scar filled from stretch marks, surgeries, central lines, feeding tubes, test, iv blows, extra skin and things from being sick and under or over weight.

I have been on high dose steroids that made my cheeks real big. I have been malnutrited enough that my hair has thinned my skin is pale my nails don’t grow good. My strokes have made my smile look different then it use too.

My body is mine And mine a lone but it has been through so much that I can’t help but love it.

I wish so much I could truly live inside a non failing body but that isn’t even a choice for me ever.

My dark rings around my eyes and my red skin in some places. The swelling from anaphylaxis and from being so sick.


I’m amazed and in full love of my failing body. I will never stop loving the way it seems when my body stops and it shuts down. I will not be surprised and will not hurt it in any way.

So even through my body has changed so much my soul never will. I am not my body I am more then my body. I’m more then my diseases.

I am kind. I am beautiful. I am funny. I am silly. I am happy. I am loved. I am joyful. I am peaceful. I am human. I am who I am because of how I reacted to the things that have happened to me.

I will fight. I will scream. I will be ok. I will stay alive someway or other.


So next time you look in the mirror and see something you don’t like remember that your body is keeping you alive. Even if you have to take meds and have feeding tubes and central lines or are hooked up to oxygen remember how much you as a beautiful soul have done. Beautiful.

You are beautiful. Your body is yours and yours only even if all your organs aren’t your own. Even if the blood running through you is t your own. Let the way you see the way you feel. The way you believe in happiness.

Find happiness. Choose joy. And love your body. No body shaming. No giving up. No. You make the world better.
So as I look in the mirror and see all that has changed here is what I want you to know. I’m strong. I’m hopeful. I’m beautiful. I’m happy.
The mirror has nothing on your soul…
ShayWeasel is going to go put on bright colored tights and a tank top with a hot pink bra. I am more comfortable in my skin now then I ever have been. My failing body is the best failing body I got..

ShayWeasel

 

 

 

Blood donors and iron infusions! 

Today I got a full iron transfusion and I got a ferritin transfusion which is like what holds iron in your body
The iron is then released into the blood stream, where a protein called transferritin or just ferritin attaches to it and delivers the iron to the liver. Iron is stored in the liver as ferritin and released as needed to make new red blood cells in the bone marrow. 
So when my body makes the protein ferritin but my body doesn’t make enough ferritin for my body to hold iron like it should. And on top of this my eosinophils (a type of white blood cells) attack random parts of my body anything from my throat to my colon and then collect in organs like my lungs and liver.  

   My body makes red blood cells but they don’t “live” per-say as long as they should be. So they die off and my body is without the amount of red blood cells as they should. And red blood cells are the blood cells that carry oxygen and help you live. 
  As you can see from these photos this is my disease at its finest. Something you can see.. pale skin, swollen face and kinda puff. My skin seems see through on the photo on the left… the photo on the right is from after I got the transfusion. 

  Now in that one my skin is looking more alive my body isn’t as puffy. I’m not as swollen and most of all I feel slightly better. This is not a fix all for everything but it is a need for me. Blood donors save life’s everyday and they don’t even know it. My blood wasn’t as low as it has been I didn’t get blood fully this time but it’s always something that I might need. 

   So if you feel like doing something amazing this Christmas season then go and donate some blood!! You save life’s every time you donate!! 
  I know people who have to go get blood every few weeks. They wouldn’t be alive without donors. 


  I’m anemic. As has been always will be. But I got iron I got stuff to make me strong. To make me feel better! 

  

  This past year has been insane but one thing is fully and lovingly true. With my family my friends my God and lots of cute humans and dogs!!!! I made it! 

  

 Happiness is sometimes color on your skin. Sometimes it’s just what I need.. 


  Life is full of joyful things!!… 

Shayweasel got some energy… out!! 

 

Curing your idea of my disease 

I’m a spoonie who isn’t hoping for a cure I’ m just hoping for tomorrow, even if tomorrow is painful. I’ve gotten sicker since I was two weeks, my allergies aren’t getting better, my body has declared a war on me that no one knows how to handle. Doctors look me in the eye and go maybe one day we will have a cure but I can’t dwell on that. I just want treatment and understanding and maybe I wasn’t born to be the first one with the cure. I was born to bring understanding. I don’t find that a bad thing.

If I did get cured. I would have to get use to a whole new world. Would the medicine or surgery mess up my brain the one that cured me? Would I stay shay weasel? Or just be plane shannon and nothing else? Would the cure work for two months and then all the sudden stop working and I die… Sooner then they already had thought…

I’m asking as someone who is scared of all outcomes that hold on to life. Do you understand the life long hardship over living inside these bodies??

My friend Jazzy was talking to me about it. We all don’t have to have the same diseases to have one understanding. We don’t know what will happen tomorrow or if they find a cure or never find a cure. We learn to adapt to the world around us. We are stronger then we know we are.

 

Another point is does God cure some to show we can do it? Or are other not cured because we just don’t need a cure? Do I need a cure? Am I suppose to be showing people how to be alive inside a body that is killing me? Because everything doesn’t happen for a reason but everyone is here for a reason. Even if its a bad reason. We can’t stop. We just adapt.

Every spoonies has different outlooks but me and some of my best friends and me have simpler things we look at. Like me and Jazzy aren’t sure we hope for a cure we pray for understanding. I pray for the love of Christ to be shown through me. Not a cure. Maybe I’m not meant to be cured.

Now I’m not saying I wouldn’t jump at the chance to be healed fully but I wouldn’t jump I would ask questions, I would wonder what the treatment would feel like…. Because for me this has been my life and what if the treatment kills me instead of heals me?
How do you go on when you are cured? Is being cured truly being cured? Where do I draw a small scary line?
So I pray for treatment. I pray for understanding. I pray for love. I pray for you. That you will not only understand the fear of being sick but the joy of being sick. Don’t take advantage of the word cure. The cure of life isn’t living it’s enjoying living. Things will never be simple but I  find happinesss

I found it. In me.
Don’t find it in things. I found happiness at the button of a rock filled place were I was basically stoned and laughed at and I stood there and I spoke with grace. With love. I won….
I don’t need a cure I need love. But if I’m never cured…..
Find me… shayweas…

Lines in my brain 

About four years ago I sat down and drew a weird drawing. It was weird and didn’t look that cool or anything but since my first coma, (words that shouldn’t be together “my first coma”) I have made more of these drawings of lines and weird things on paper.   I think I make them to sorta show what it’s like to live inside my brain… 

  This line here this line there now try and find your way in… where do I start and where do I end it doesn’t matter and when I make these drawings I find peace in knowing I don’t need to be perfect to be beautiful. Because it’s a beautiful mess I’m in. 
   I wish only to be better understood. So I hold on to the happiness I found in my ugg boots and cozy blankets. I don’t give into the lines I give the lines in. And I remember that nothing has to look a center way to be beautiful. We are all so different…. 
My lines in my head are black, purple, pink… the other colors can be found. Know take a step back and remember why you are who you are…
  Wasting your time on fear only hurts you…
Enjoy some photos of my lines breaking in my brain. To let me know that nothing is to fear. And fear it’s self can’t kill me. But a walnut surely could kill me. But I come in with epipens in hand and I draw

Lines and I find hope inside me. 


Shayweasel… here… 

Advantages to Have a Failing Body

Am I getting special treatments? Or am I getting treatment to make me equal?! Am I equal to what I can be as a human? Do you need help carrying things up stairs like

Your purse or backpack? Do you need help showering? Does your mom say no cooking or anything while I’m upstairs. Don’t even go into the kitchen! This is my reality but it’s not treatment so I can have an Advanrahe over someone else. It’s so I can be equal.

Where is my Advantage you Might ask? Does being this different? This sick! Being autistic!
My advantage is that I will understand people better then I did. I’m more caring than I have ever been. I love deeper. I am thankful and grateful for what I do have. I’m thankful for my family more. I’m thankful for my rare diseases for my failing body!! 

I’m thankful for me.
I have an advantage over others I do. I have the advantage of living beautifully because no one can kill my soul. Someone already took my spirt out and gave it to the ocean and I never found that one but I made one Better.

 
My advantage is that I am dying… why not take advantage of my voice that I have in the world? I’m not perfect but I’m perfectly beautiful.

I am
Taking advantage of myself. I will take advantage of the failing body I live inside. I will not always win the way others do but I will win the way I need to.

So my series I do get an advantage over people who aren’t disablied or who haven’t had to deal with differences or rare diseases. I have the advantage to take everything I need and enjoy others. Enjoy simple. 

Enjoy minute to minute. I can find happiness. Because it’s everywhere if you look. It’s not easy but I found happiness. I have the best advantage over some… I have God, fantastically friends and family. And I will always take advantage of this My main advantage over thing is I’m not failing my failing body. I’m straight lemon juice. I will not water down things to make you feel comfortable.

 

I will be taking advantage of who I am as a human. I promise to fight everyday for the next years to survive but more then that I will take advantage to choose Joy! To find happiness in every day life. If I stay positive. If I stay joyful, if I find the Pollyanna in myself then I am doing my job.

 

I have a window of happiness of beautifuliness that I can change my world if I let others in. If I let myself be who I am. I have the power to survive… I am taking advantage of dying..

I’m taking Advantage of ShayWeaseling

Taken Advantage of the people who care for you…

I ask my mom, my sister stephie, my papa, Nick, I have asked a lot of them. I have used there kindness for my own good. I have let things just go south and been worse off because I would get needed rude and wouldn’t always be positive about things.

img_5771

 

 

 I’m sorry, I’m sorry that this is so hard for you, I know watching someone be sick is hard.. You don’t want me to be in pain you don’t want me to be mean to you either. Its hard you are not a doctor you are not a nurse but you are a amazing caretakers you all have been. And I don’t make it easy on you guys a lot of the time.

 Being a caretaker isn’t easy these people can be anyone from parents to friends to sisters to sisters boyfriends to my brother to my brothers girlfriends. Its anyone. Any family, its any friend.

  They have a hard job, they work thankless Jobs sometimes they listen to my rants my rudeness and my mean hearted scared out of my mind yelling and crying. I don’t want to die which sometimes just makes me cry.

 I know that everyday they have to wake up and take care of someone who is sick and might not get better  parents are suppose to have their children take care of them in there older age byt my parents got a strange thing they have to take care of me. As they watch in fear of what will happen next.

  I don’t want anyone to be scared of me to be worried about me. The caretaker job is a lot of work, I’m sorry to my caretakers to my family and my friends when I am not positive and when I’m bing mean unkind and have words that hurt. I’m sorry for the way I have taken advantage of you… I’m so so sorry I have taken advantage of you. You don’t need to be taken advantage of when you are trying to let me be able to save my life. I’m sorry that things are hard.

 But most of all Thank you for being here when everyone else didn’t know what to do. Thank you for believing me thank you for holding on to me. Thank you for loving me. To all the caretakers out there please know we love you,..