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.

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 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,..

Being autistic and raped: part 2

When you walk into a dark room and a girl who is your friend or that’s what you think comes over to you and pushes you back and you fall down and hit your head. Wake up tied to a bed and then things went from there. 

   I don’t think I choose a good friend to hang out. But sadly my college was horrible to me. I was going to a small baptist college and they didn’t accept me but that’s another blog post. 
  This was the first time I was raped. A girl. She was a women. And she raped me but I kept thinking because of the world I grew up in that women don’t rape women. But anyone can rape anyone. And because I was weak. Because I was sick. Because I was innocence some of which or well a lot of it came from the fact that I am autistic.
  This was not something no one could tell me how to feel.  

  

  My body was broken on the inside and on the outside. I thought friends were suppose to be nice. Suppose to love me and care for me. Not try and control me. Not try and sexually take advantage of me. Not try and kill me? But I was to scared for police for anything 
   I’m stronger then her now. I haven’t seen her. I will never see her again if I have my way. I pray that she never hurts anyone else like she did me. 
  But I’m not scared anymore. I got a group backing me up now. My walls around my world the one I let people into are carefully moinioted by me. No. not anyone else. Because you see I’m a bad ass who isn’t letting anyone be mean. If you want to be mean i will pull my phone out and call someone. I’m not scared anymore of it. 
   I don’t think I would have ever ended up in a psych hospital, or been raped by three different people. I blamed myself because who gets raped three times in one year?! Someone who is scared. Someone who doesn’t handle people well. An easy target who walks the same way at the same time every night. Someone who isn’t physically strong enough to fight other humans off. Someone who is me. Me. 
   Imagine being scared of making friends all your life and not being great at talking to people all the sudden trust was something I couldn’t do. I can’t trust anyone everyone will hurt me. 
  It took me about 11 months to come to myself and go. Ok I’m not to blame. I was taken Advantage of. 
  Fall of 2013 was the fresh start I didn’t have and I was slow to speak about it. But I was even slower to talk to people. To make friends. I was healing from friendship abuse. I was controlled. I was recovering from my failing friends. My best friends were JoJo who at that moment was working in China. AnnaJoh was working at a camp across the USA. And I was alone but I wasn’t. They both checked in on me. Even when I didn’t write backcthey didn’t get mad. 

 

My first true friendship after this was Macy. Macy has rare diseases. She lives in this world with me. And I opened the small gate hidden in my walls around my World and I let her in. Slowly more came Dara, Jazzy, Cheyanne, Josephine… spoonies like me but more so humans like me. They like me for me. 

  The walls are still up but my world is bigger. I go outside my walls sometimes but when I do. I have a gang of 20+ people behind me ready to battle with. 
  Being taken advantage of sexually is hard to handle. Being taken advantage of with friendships. With people who try to kill you. With a world of horror of fear. That is were things collapse. But you can rebuild. Just like a lung that collapses you can reinflate it. You can. 

 

  Advantage? Taken….

Shayweasel snapping her way out 

Taken Advantage as A Chronically Ill women

  It’s just “women” pain he told her as she sat in pain crying. Her husband had brought her to the hospital because the pain was so bad but what that doctor didn’t know is that her body had started to shut down and it was then and there that her “period” problems became her organs failing. Her women organs failing. If my heart was failing would you stop and go it’s just heart pain getnover it?

   No you wouldn’t so why does a women where her ovaries shut down. Go into failure are a “just” pain. Can’t it be I’m having pain. Not your just having chest pain like people’s pain isn’t valid. It is unfair that because we are young women or older women or women of any age (and some men who still have there periods) have to have a just pain. I shouldn’t be in so much pain. 
   No one should be. 

  My best friend is having to have a hysterectomy because she is basically in organ failure. You tell me that a 27 year old women shouldn’t be having a hysterectomy. That’s to young. But I’m pretty sure if doctors would have taken her period pain more serious because it was serous. 

   Then maybe this wouldn’t be happening.. because this isn’t fair to her. But what is more unfair is that it took this long for someone to find the problem. The young women who I’ve become friends with all seem to have one thing that doctors blame on. That’s period


Pain. They say things can’t be that painful and that people

Need to sorta get over themselves. But what they don’t understand is that “just” didn’t do the pain justice. Because pain she was feeling was and can kill her. She isn’t over reacting. Now she under reacts because people have hurt her every hour of her life when it came

To period pain. Because it’s not a big deal to have to have a hysterectomy at 27 and having to remove dead organ tissue. 
   What would you do? How can we stop being taken advantage of in the medical world? 

Being Autistic and Raped 

  This post is personal, raw and not very uncut. It also can trigger some bad memories for some. Just so you know. 

  No one wants to talk about rape, no one wants to think it can happen to them. And I didn’t think it was gonna happen to me. But it did. 


    At 20 years old I walked the same place at the same place everyday. That’s where my autism comes into play. Every night at 1 am I would take a walk before I laid down. I lived in Va beach at the time. The walk was always nice and made me happy. One nigh as I walked my normal walk I was pulled into brushes and dragged down another raped by two men. 
   I was able to get away but screamed and then went inside my house. 

I didn’t go to the police. I was scared. I didn’t let people in my world. I had a small world. This world was mine. And someone had broken my wall. 

   My body was not one to be touched by most people. And I couldn’t rebuild. 
  I didn’t really tell anyone what happened. Because I didn’t know what to say. I texted my sister. Who texts someone and says they are raped?
     I ended up going to the police a few days later. Things never went the way I wanted them to. But I learned to cope. 
   I end up getting depressed, I’ve never handled my emotions well but I was all the sudden handling something I never knew I would. Being kissed, having sex focusably was not what I wanted. I was already sick inside my body my diseases that had pleg my stomach, my brain, my joints and the rest of my failing body. But at that moment I failed my body. I failed my brain. I stop having emotions I didn’t want to handle it. 

   

  Autism took over. And that’s when 2013 came in to play for over six months ididnt want to breath. But the summer of 2013 I decided that I loved myself and I loved my emotions and I loved my diseases and I loved my autism. I loved my mind. I loved my brain. And I wouldn’t give up on them because I was not going to stop fighting my failing body. My life could fail me but I had to live. I had to keep going 
   You see autism makes me think slightly sometimes fully different. I hate being touched. It scared me. It’s a sensory overload most of the time. Unless I trust and fully am ok with the person. But that night on my walk when I was pulled into brushes and was raped by two men. I didn’t know them. I didn’t trust them. I didn’t want them. 
   Sensory overload was scary hurtful and weird. I didn’t know what to do.  
  So I didn’t do anything at first. 
I went to the police a while later…. but not right away. I was in an emotional shut down mode. 
This is what happens when someone who is autistic is raped. The toll it takes is a different kind of horrid. Never let yourself feel like rape is your fault. It ain’t your fault. 
  Being taken advantage of sexually is hard but when one simple touch hurts you to the core then it’s like I was handed a lemon and told to eat it. If nothing else I am just straight lemon juice now… 
  this is a part of my blog series Got Advantage? Or Taken Advantage of?