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… 

Dear Netflix Show Strangers things


I’m a lover of most of the tv shows that you’ve made. I’m a huge fan of Between and I totally wanted to watch your show that you put out this summer called Stranger Things. My family watched it, my friends watched it, everyone told me great things about it. It sounded so amazing… but something I really need to tell you. 
    I have seizures that can be easily triggered by flashing lights, and your show stranger things had so many flashing lights I was unable to watch your show. But what’s worst is that I felt left out. Like I wasn’t in on something. I miss out on weird things as someone who is living with a progressive terminal rare disease and I would love to watch stranger things. 

   But I can’t risk a seizure for a tv show. In my world someone I’m watching tc with will almost always say something to me when flashing lights come on and show so I can cover my eyes or turn away. 

   

   Netflix it’s not just you who doesn’t even know they are overlooking people like me who want to watch your shows. It is so many other people. It’s so much in tv shows, music videos, movies and random events. It’s so hard to know that I can not do something like others because I could have a seizure. And if that seizure happened to send me into status epilepticus which I’ve been in about nine times 3 of those made me in a medical induced coma on life support. And one was intubated after my air way collapsed in on itself. 

 

   What I want is simple.. a warning. I want to be able to look at something and it read or say “there is about to be flashing lights,” or “this show could trigger seizures or migraines.” And most of all I want you to somehow say “I’m sorry for the inconvenience.” 
   And a warning to you Netflix is that seizures triggered by flashing lights isn’t rare. There are others like me. We don’t get to watch the show. We feel left out by the over looked world we have to live in. 
  I’m not mad at you. I love you Netflix. I’m always up for Netflix! You do so much good and made hospital stays wonderfully easier and make me be able to watch live shows over and over again. But please don’t over look the triggers of seizures or migraines or anything else. It’s hard enough. 
 ShayWeasel going to watch Gilmore Girls on Netflix 

It Ain’t My Fault

It Aint My Fault

 

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I have had random humans though out my life blame me for my illnesses, for my diseases, you know the diseases I was born with?

I’ve met people who believe some people with diseases are being punished by God by either something they did or that their parents did.

I see this as a nagative way to look at the world. See I see it as this.. I have diseases to show case the mighty power of God show people that God is stronger then any human that sin happens and it doesn’t mean I can’t praise the Lord. I see that these diseases that eat my body and kill me are powerful but God is more powerful but God doesn’t have to cure me to  show his powerful fantasticalness.

I don’t need a cure, I need love, caring, and I’m here so get over it. I’m not being punished neither are my parents, grandparents, so get over your self. I don’t need God to cure me to know he loves me, I have accepted my failing body and I’ve made quite a home inside this body and one day I’ll go to heaven and level me behind.

 

but it ain’t my fault I have diseases, It Ain’t My Fault I have autism, it is not in my belief that it is anyones fault. Its just how it is. It is life so just accept it.

I’m not saying being in pain basically 24/7 is fantastic but this is my life and it ain’t my fault and it ain’t all bad. I have fantastically friends and I have made my faith with God strong and I have a pretty fabulous family who loves me and it ain’t there fault I have a disease either.

 

 

It Ain’t My Fault when you don’t understand. I am not at fault for faulty understanding and faulty treatments. I didn’t ask to have diseases but now that I have them. Its ok. I don’t mind. I’m very blessed and maybe just maybe if I can learn to be happy then other people will see they can be joyful and happy in darkness… I feel like I found a Macy Jazzy Dara Cheyanne Aannajoh and Jojo in the darkness and was just like wait its dark? Huh I didn’t even notice…

Because if you just keep falling over things you just start thinking its normal. If you don’t care to get up when you fall down and just start crawling around in the darkness and no I’m not looking for the rainbow I’m pretty sure I have the rainbow, its inside each of the wonderful people in my life.

It is my fault that I forget that other people will never understand how to be joyful when the darkness closes in…

It Ain’t My Fault that my mom gave me sassiness and I took it with pride and am now ShayWeasel. I like who I am. And I don’t care if you don’t understand but I want to show you that you can truly understand. Try..

So Maybe instead of thinking diseases are curses we could see them as gifts, as things people wish they had. I don’t wish away my diseases. I do however wish away mean people. I love who I am. I sometimes wish these diseases didn’t hurt people close to me I hope I can bless the world. I do control one thing, I control how I react to the diseases, to the diagnoses. But it still ain’t my fault that these diseases have almost killed me. that the Lord gave me them. He knew that I was weird enough to handle it, well sorta. I believe that not everything happens for a reason unless we make a reason.

And the darkness that I’ve lived in and adapted too. and be ok with.. That is how I make the reason. It Ain’t my Fault this diseases are like scary, and are totally horrid, I mean no i don’t want to be in pain anymore but I don;t mind being in pain if that is how God wants me to change the world. To show grace. To show love.

I’ll take it. I will learn to get through. I can get through anything. I mean I’ve gotten through a lot with weirdness, awkwardness (lots of awkardness) and I have hope that I will keep going, but I just hope for treatment because maybe I don’t need a cure. I just need to accept this ain’t my fault. And get some treatment to get through.

 

Shayweasel is more confusing then most people thought… Have a darkness full day where you didn’t even know it was dark…

 

Shay weasel out..

Relearning

 

I was talking with someone, a lovely human named Moriah, the other day about relearning things. And how when you become an adlut you relearn all kinds of things, like how to be who you want to be and weird things like that. I personally am relearning how to be helpful. I can’t clean very much, I can’t give a bunch of money to someone. I can’t watch any children very long. So I’m stuck how am I suppose to help when I need others help so much?!

 

 

 

 

 

I am now understanding I need to learn to be positive, I need to be kind, I need to be grateful. I need to be nice. I need to love my parents, my sisters, my brother, my family and my friends. My job no longer is to work with my body, but its to work with my heart. I need to be someone who is joyful, I need to be open, honest and loving. I need to ask for help. I need to not get mad when things do not go my way. I was put here by the Lord for so many different reasons and one of them is, I need to be kind. I need to show mercy, I need to not get angry when the treatments don’t work or when I don’t feel like I’m being useful.

 

My mom use to tell us when someone wants to do something for you to let them because you are taking a blessing a way from someone if you don’t. I think lately I’ve been taking blesses away from people because I want to be indepent and I can be, but not as much as I have been. Nothing is wrong with needing help. Nothing is wrong with crying. Nothing is wrong with being someone who doesn’t do everything right.

 

I’m learning that my job right now is to let others help me, and for me to show grace, and show how grateful I am. My job is to be positive and be a Pollyanna, be loving and kind. Be merciful to others and not get upset or mad for no reason. My job is to be human, but to be better..

I told myself today as I upset a few people that my emotions are allowed to be felt but the emotions are me are allowed to be upset too. I love my family, I love my friends. I love all the people I get to meet. But I must remember to show love and kindness.

 

I’m relearning what it means to be human, and I believe it might take some time and I do say I’m truly sorry for the people I hurt the most,

 

I have people who are willing to help me, to care for me, and to give there life to care for me. So I must love them. I must be grateful. I must be Godly, I am selfish, and I am rude. But I am relearning the world…. One step that I can’t take alone. I need hands to hold me up, SO one step with help at a time. I’m relearning to be human, to be loving.

 

Thank you very much to Sherri, Stephen (my parents) Stephie, Vana, Sam, Taylor (my sisters) Sean, Matt, Nick, Josh (my brothers) Rory, Wavey (my nieces) Carson (my nephew) Helen, Gale, Terri (my aunts) my friends and for each and every person who prayers for me and my family, and for each person who cares.

 

 

Thank you

 

Shay weasel learns something

To My Best Friend Aannajoh and Joe on there wedding Day

 

 

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What your getting married!!! I’m proud of you for how you’ve held up your life, and I’m proud of you for showing Christ through your whole life and this Godly man seems pretty fantastic. Now I have yet to meet this awesome Man but I will be meeting him this friday.

I also will be seeing you for the first time in 12 years on Friday. I’m going to react some crazy way I’m sure and I’m totally ready.

Now I am totally not married but I want to tell you some weird wisdom from somehow who keeps almost dying. Life isn’t scary, neither is death. Just be ok. Accept everything about Joe, and remember to smile. Agree to disagree you don’t need to be perfect, you are wise you have the Lord on both your sides.

Do fight, do get upset be human, show emotion. Let emotion run through. Now as someone who loves very much I want to always be honest if you don’t like something even this post let the person know.

Don’t hide stuff, don’t blame stuff on anything, but do show emotion. Please show emotion, be happy sad scared angry and weird. Be a dork, be a weird, and totally freak people out.

I’m blessed to know you. I’m amazed by your kindness your strong loving blessing to me way about you. You are like a beautiful bible believing women who is doing great things. you’ve already changed the world by being you. So keep up the good work.

Talk things out, as a couple, as friends, and as a human. Let yourself always be friends with Joe, be a wife, and be yourself. You are no matter what a human a lovely human. So don’t stand in your own way of being anything you want to be.

Take each others gifts and showcase them. Care. Give. Hold. And pray. Pray a lot.

As you and Joe became one about a month ago, you both will stand together forever but you will also stand alone, lean on each other but still hold yourself up. So that if one of you needs to lean fully on the other person you still can.

 

I’ve never been married, so I truly don’t know but I have watched a lot of tv, so same thing……. Not at all..

I love you, I know you love Joe and he is seems to love you. I will stand (most likely will be the only one sitting on stage during it) but in sprit I will be with you no matter what. We had a friendship for 12 years were we didn’t see each other once. So remember that if something happens and somehow you and joe are apart remember its ok, you don’t have to break to heal. You don’t have to be face to face to show God’s grace. You are stronger then you will ever believe and together you guys could rule the world.

I mean I know maybe I sound cheesy but I’d rather let you know that today, tomorrow and whenever, things are going to be weird, confusing hard life is ok. Aannajoh, I’ve known you since you were five, I didn’t give up on your friendship then and I won’t now. I love you.

 

ShayWeasel (Shannon) with love…. And cookies!

 

 

 

 

Dysautonomia Awareness Month – Awaress

 

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Awareness for Dysautonomia is important. People normally go years without diagnoses and slowly get worse and worse. As the disease progressives it slowly takes away the ability to stand, walk, sit up and so many other problems. Immune systems, Stomach problems, heart problems, and migraines headaches and vomiting are just some of the things dysautonimia does. Its hard to live with but I’m very grateful for the wonderful friends I have made during this time. This disease is so hard, this month as it is Dysautonomia awareness month. Awareness is the key to understanding and to diagnoses.

It’s Just Allergies that’s the scary part 

  I was 8 years old sitting in a doctors office. When the doctor told me it’s just allergies take some extra Benadryl. By the time I was 13 my just allergies were allergic to everything they had put on my back for the allergy test. They said it’s just allergies. 

   Another cold. A stomach that hates everything. Going vegan. Trying to find out why I hurt so bad. Too bad it’s just allergies
What it really is… is Being able to be allergic to anything at any moment. It’s having to have itchy eyes and it’s not being able to breath. I mean basically the doctors were right. It was just allergies. But those just allergies basically killed me. They still are. 
These diseases have a harsh reality that is scary to see. It’s scary to see. It’s two epipens and a ride in the ambralace it’s not having treatments. It’s doctors giving up on you. It’s a doctor telling you that you might end up dying before your 27 if your heart goes on like this. It’s feeling like you’ve felt like the world has crashed you but really is just your body. 

    It is shocking almost 13 years Looking and searching for my stomach issues. Almost 8 years since I found out about my 20 foods allergies 22 years since we found out I was allergic to all outdoors and 21 years since I we found out about dye allergies and things. 20 years since being diagnosed with asthma. 17 years since I was diagnosed with my dyslexia and autism. 15 years since I went to the hospital with really bad stomach pains. 

    What is shocking is that I’m still alive. 

  I’ve been put on life support. I’ve used over 200 epipens this year and do you understand that mean I’ve almost died over 200 times that I’ve set somewhere as my breathing became hard

As my oxygen dropped as my heart rate went up as my blood pressure went crazy high or crazy low. Do you understand! Dying can happen fast and for me

I take a risk every day by moving, standing breath. Yea it’s just allergies. 

It’s Just Allergies that’s the scary part. 

Shayweasel out sneezing