I don’t know how.. But I am more amazed more happyMore loving life then I ever have before.. I don’t think I could

Be any more happy and feeling loved and blessed by God then I do right now…. I can’t imgaine my life being any more amazing then it is right now like I love the people

I have in my

Life. I love that I have such good friends support and that I have a God that is always here and I have a world where no matter what happens I’m strong enough. To live inside my failing body and that on a daily basic I’m fully amazed by Macy, Jazz, Dara, AnnaJoh, Stephie, Rory, Carson, Wavey, Sammiy, Vampire, Sean, Josh, Matt, Nick, Cheyenne, Rachel, My papa, My mom, my aunt Helen, my life couldn’t be any more amazing just because of the people that God placed in my life… 

 You know my insane failing body is never gonna not fail but I’m not failing and I’m fight but it’s because of the amazing people

Who I have the world I live in is never not gonna be confusing but I’m more

Happy and more blessed then I could ever ask for. And I would never change

Anything because this life I have is amazingly FANTASTICALLY!!! And I am strong enough because of all of

The wonderful people and my Lord who gave me the body the mind and the randomness of being ShayWeasel!! I got

This…. 

   This is not just my fight song or my fight this is my failing body that I will never fail…
ShayWeaseling it!!! 

I feel like on June 29th 2015 the world stood up in front of me, Stephie, my best friends, my family, and looked at me and was like your going down… And everyone who knows me and knows anything about my weird life is that when I get thrown into anything I normally try to find a way to dig around and see what’s around… I had a seizure my body stopped.. I was put into a my First medical induced coma, and I was on life support I was intubated.. They told stephie that this could be it, call the family, but if you know anything about my familyAnd my fighter Stephie you know that all of us are like yea right we got this…..

   Stephie fought every day from the moment I was born and from the moment she yelled at Sam and told her to get out of her way… Stephie fought for me while my body was in the first coma, and when I awoke and all we knew was that my body was like a pretty little unicorn and I mean it always had been but I think my body was like hey world

I’m a unicorn and I got this… This year Stephie showed my body, doctors, the world that she is a bad ass who wasn’t gonna give up. 

 

 This year I’ve been in a few comas, been put on life support, intubated, used more then 250 epipens, no idea how much Benadryl, I’ve meet some of the most amazing people I’ve ever met. I’ve made friends like Macy, Dara, Jazz, Cheyenne, who fight there bodies every day and who are funny, fantastically, weird and my best friends. I’ve gotten closer to my lovely AnnaJoh who I might not have seen in like 12 years but dude I’m gonna walk in your wedding and I’m gonna cheer for you everyday because your my AnnaJoh. 

   I’ve gotten closer to Vampire and Sammiy and I’ve learned that you don’t have to be right beside someone to have them pull you up… I’ve got to see Rory grow and I got to see Wavey and Carson grow and become so much more amazing every day and I might not get to see them every day or as much in person but it’s

Ok, Carson was officially put into our family like he always was we just got cool paperwork. I’ve seen my Brother-laws Grow to be even more amazing and to help the women they love, I’ve seen each other them be humble and become more amazing men. 

  I’ve watched Sean become even more amazingly awesome and totally super Sean. 

  I’ve yet to met Taylor in person but from what I can see that women is pretty fabulous!! I mean but if anyone knows my family you

Know we are just as random and fantastically as can be….  

   I don’t know what’s gonna happen tomorrow but I don’t care… Because it’s gonna be ok, this year dying would have been way easier for the doctors to explain to everyone then when there are 8 doctors standing around you and one of them says out loud “Shay your blood pressure is 34/14 and your awake and standing at me… How?” And when I struggled and all the nurses and doctors are just kinda like

Whelp we got no clue… I’m like my body doesn’t have any idea either…
 A year ago I cried one night for a while

And I was scared and Stephie looked me in the eye and said lets do this… We fight.. And you know what… We just fight… And fight.. And no matter what happens next we are gonna just keep going… So hey comas, allergies, a body who is

Gonna fail me.. You

Know what?! My God, my Stephie, my best friends, my family they don’t fail me

Soo who needs a working body when you got love and fight from my lovely humans!!!

   I love my life, and I’m gonna die inside a failing body and I’m gonna have pain, I’m gonna be ShayWeasel and I’m not scared because I have a little army of people who are amazing..

 So this next year…. Come at me… I’m ready…. For nothing!! 

I didn’t get to post about this on Janury 3rd so I’m posting today!! A year ago I found a photo of some of my favorite baby food at the time pumpkin and apple baby food because what else would it be?! 💁🏼 one comment on a photo and a DM on Instagram lead me to the giggly and randomness that is one of my weird soul mates Macy!! And Addie!! My friendship with Macy is deep and the bond we carry is strong! Two am FaceTime, Skype calls, tears over everything from the lost to a treatment not working, to Drs treating you horridly to the joy of a diagnoses. To the sadness of more disappointed and more diagnoses and more we don’t knows and more we don’t have treatment to we don’t know what’s wrong. But to finding postivity in the darkness and being grateful for the little things. Macy hasn’t just been one of the most Amazing people I’ve ever known but she has become one of my best friend and strongest people I know. We are fighting illnesses not seen by the naked eye we are fighting diseases, we are fighting our bodies. We don’t get days off we don’t get days to relax. But we fight through we never give up and we never let an illness win. Macy you are stronger then you Even could understand. You have a beautifully fantastic soul and I can’t wait to see were this friendship takes us!! (Also Kyle is pretty fantastic for always being. There and for fighting for Macy! Addie you rule!! And we all know that Rory and Addie FaceTime more then you and me.. 😍😂💁🏼💁🏼🙈 )
  Macy you and me got this!!! Let us fight! 💪🏽💪🏽💪🏽😘 love you!! Happy one year friendversary and happy one year anniversary to being married to your wonderful husband!! 🌻🌻🌾

This is friendship when you are chronically ill. Online, through our cell phones, laptops, iPads, kindle fires, we are strong yet our bodies our week. 

  She was the first person I texted when I woke up from my stuff back in may I texted her photos of epipens and of my underwear.. Best friends doesn’t even cut it in my mind. Macy you rule we got this fight together we are stronger!! I love you!!  

 
Shannon DeRose. 

I feel like I don’t have time to give up.. But I wanted to Friday and I feel like as a spoonie as a person with a chronic illness you have days that you feel like giving up and you feel like all of this is going to hell and you see the tears and you see the pain that these diseases and the Drs who have no clue what to do so they do nothing..

You see the pain that they cause not only you but your family and your friends and your life. You watch as your sister has to give up more shifts because you can’t be left alone due to the seizures and passing out but then you see the closeness it has brought you and your sister that closeness that k serously would trade for anything. That love that my sister has for and how hard she has fought for me time and time again and that she hasn’t given up she hasn’t told me this is to much for her.

 

That’s why I keep going that’s why I can keep going becaus did she can fight that hard for me. Then I have to fight that hard for her. I see Nick and I see Rory and I see how they fight for me in so many ways. Nick goes out of his way to make sure I’m safe and to make sure nothing happens to me. I’m scared all the time because these diseases they just flare when ever they feel like it. My body is failing me and at times I have failed it and I have failed my family. On Friday I was upset. I was scared I was emotional.. And giving up seemed like a choice but on Saturday morning my mom came into my room and told me that we are fighting together.. 

 In this family no one fights alone but in my life I have friends who fight with me and they also fight their own bodies. I don’t just have my sister Stephie and the rest of my wonderful family. No I have friends who fight hard and long hours who pull feeding tubes out their nose at 3 am after having to do the same thing the night before..  I have friends who grow new bone over there old bone and still wake up everyday and have a sassy beautiful soul and are basically always positive! I have friends who fall asleep for days at a time and still find the good. I have friends who wouldn’t give up anything to make sure I’m safe. I have support but that support is something I wish everyone had…. 
 My body has fully failed me time

And time again I’ve been told that making it through the night might not happen.. I’ve been told that that anaphylaxis reaction should have killed you.. I have been told over and over again this shouldn’t happen.. But it did.. I’ve had bad luck with Drs and I’ve had the Best luck with Drs as well I have fought an do have almost given up. I haven’t always been strong but I’ve always fought.. 

 

This is a fight that is insane like the wonderful fight song says “this is my fight song prove I’m alright song… My power turned up starting right now I’ll be strong this is my fight song..” And her other beautifully written song “I’ll stand by you even if we can’t find heaven I’ll walk through hell with you… Oh your not alone cuz I’m gonna stand by you” I have people standing by me. I have people with me fighting this long hard battle that will one day most likely take my life but I’m not going down without a fight and neither is anyone else around me. 
I had a dr last week make me feel so out of control and so scared but this weekend the people in my life stepped up and yelled and raised some hell for me.. They are walking through hell and they are all going through something outside my own little wolrd. 

We live a life of hard test and so many road blocks this week I was taken off the road I was on and put out in a snow place and I sat down in that snow and instead of freezing to death so many people just came around and they all warmed me from the inside out.. They didn’t even know everyone else was there.. They all stood side by side and said Shay you got this.. We know your strong you got this and I didn’t think I did but I stood up.. And I didn’t let the ice cold of someone who truly didn’t understand a dr who had no clue what she was doing I didn’t let that take me because I had people who stood by me and they totally walked through hell with me and we are no where out of this snow yet and these woods are hard to see in but I’m walking and I’m not failing my failing body.. 
   

• Stand by you and Fight Song these songs have helped me get through!! I got this fight but no one fights alone. Keep up the fight if your fighting remember there are lots of spoonies and lots of people who are waiting to fight with you always reach out and be open about what your going through being honest about my illnesses was an amazing choice I made and I’ve never once felt like it was wrong. Because I met Dara, I met Macy, I met Jazzy, I meet Cheyanne, I met Ashley, I met Rachel, I met Aileen who started it all for me.. And after a year of being friends with Macy I know that’s being open and telling her that baby food was really good that friendships and weirdness and a love so deep and bound so strong was formed. 

A year ago I fought and my sister told me she was gonna fight with me. She told me to just fully move up here to be here wit her and that she would fight with me.. 
I never would have imgained that we would fight almost death more then once and that we would endurn 2 comas, over 30 MRIs and four surgeries 3 central lines around 9 feeding tubes and over 90 days in the hospital and over 100 ER visit that didn’t end in being admitted (with me telling Drs I’ll be good to go home.. ) I didn’t know that this is what my body was gonna do but Stephie, Nick and my supporters sent me funny text brought me amazing gifts gave me manatees and Teddy bears that looked like Beng! They gave me hope for tomorrow and lots of colouring books! AnnaJoh facetiming and sending me adorable cards!! And texts! Tara and Holly would just come up and sit and talk for hours about nothin and everything!! Lanie would send me the sweetest little messages that always made my day!! My aunt Helen facetimed me always at the best time when she knew I needed it! Vampire Vana driving up just for the day to see me Rory and Stephie!! The sweet short text from Sammiy! The “I love you Shay” texts from Sean that I randomly get! Stephie and my parents  bring me milkshakes up when the steroid cravings got way too real.. They got me anything I wanted and they spoil me more then I knew as possible and they love me. They never give up on me, They care for me, they fight for me, with me but never against me… and I fight for them because I still got a lot fight in me.. 

ShayWeasel out…  Fighting… 
Thanks for fighting with me!