All that Jazz… 

Our feet can barely hold us… But the will to live the hope to survive is strong…

  We are stronger then we come accross. We face difficulty everyday. We don’t get to take vacations from our body, we don’t get breaks.  

  We keep moving forward and we learn to adapt in everyday life. We make changes. We make do. Because well we have too. We didn’t choose the default of our bodies. Jazz didn’t choose to grow extra bone, be in pain every day..

   It’s not easy standing let alone walking through the sand.. We hold our head high but we can’t turn side to side…

  Wheelchairs, feeding tubes shots and epipens our day to day life is different.. 

    We learn to ask for help. We learn to cry and scream. We learn to be brace and to keep going. It isn’t easy. But we make it look so sometimes. 


   Friends like Jazz Don’t come along often so when they do you hold on for dear life but there is something different about a friendship like ours… 

  We both are holding on for dear life, for the chance to keep living and Jazzy makes living easier, living with pain isn’t always so hard… Living and feeling like someone is always there because they are. 

  I don’t have to go through this world of diagnoses health and I don’t have to go through life alone… One moment everyday I get to see Jazz be brave, strong and inspire myself and many others to wake up and keep going…
   We are a whole salad bowl of awesomeness… 


Shayweasel…. 

Answering ‘How Are You?’ From the Maze of Chronic Diseases

 

Hey… How are you ShayWeasel? How am i? I don’t think everyone wants the real answer..

 

  


But here is the honest scary truth, I’m lost in a maze of doctors all scared to touch me for fear of anaphylaxis or death or that the insurance doesn’t want to pay anymore. I’m lost for the world to know what is going on because I truly don’t even know whats going on..

My TPN and central line were taken away because my insurance and the doctors at the hospital didn’t want to deal with me. Didn’t want to pay. Sadly if you have money you can sometimes get treatment and other times you can’t. Getting treatment is hard.
I’m not the hospital, I’m not better, I won’t be better soon. I’m not stable, I’m not healthy, I’m not able to eat very much, and when I do I spend time vomiting, I’m in pain, I’m malnutrition, I’m not doing great…

 

Mood wise, I have good days, I have days where I am happy to be alive and I am thankful for the health I do have. Where I am able to go shopping for a dress. I’m happy for laughs and giggles and I’m happy for smiles and things. But I also have days where I can’t imagine living in so much pain. I can’t help but cry, where the pain, the life I live seems to much.

But I feel those emotions and hen try and move on…

 

How are you? I will most likely never find a cure, I might never find peace from my body, but today, tomorrow, and the rest of the weird life I live I will keep going… I will fail, I will fall but I will not fail my failing body. I will not stop going…

 

How am i? I’m not gonna be ok, but I’m happy, I love living my life, I love my friends, I love laughing, I love watching movies, I love TV, I love FaceTime, I love the walking dead, I love my blog, I love my friends blogs, I love Vlogs, I love being alive, even through every day is a new day for me to die in a new way, and every possible bad thing can happen but how am I? I’m glad… I’m glad to be here…
And to everyone else who is also lost in this maze, it’s alright to be lost, it’s alright to not be alright, you are not failing yourself when you ask for help. When you tell someone that you are not alright, you’re truly being brave, as a matter a fact being not alright is a good step to make. 

  I’m dying but I’m living. How are you doing today? If you really don’t want a good answer then maybe ask another question. Because how I am is truly scary sometimes. When you have theses diseases you fall into that maze and I believe that once you get lost in a maze just remember that the view can be very beautiful… I’m just praying that the maze isn’t made of corn or else I’m calling the epipens and Benadryl in right now…

 How are you? I want to know, so ask and truly want a honest answer. Thanks for asking and caring… Don’t give up on us 

 

How are you? Truly Truly…. How are you?

 

ShayWeasel out…..

 

 

 

GP awareness 

Gastroparesis awareness month is August this disease is one of the reasons along with being allergic to most foods, and have eosinophilic diseases, I’ve had central lines feeding tubes, having to live off only TPN and having a stomach that holds foods for weeks… It’s not easy and there right now is no cure, very little treatment.. I’ve been Malnutrition for so long now that doctors aren’t sure what to do… Gastroparesis for some can be so painful they can’t eat, I vomit almost every time I eat… Diseases are different for every one who has them… Be aware of humans who have diseases that are chronic, rare, and painful… 
   Awareness is key…

JoJo loving! 

 

love to talk, as long as it’s about something I like, am into, read a book on, watch a tv/movie show on, love, or pretty much any book ever… I can talk and talk and talk… Not till I met JoJo did I meet someone outside my family who could talk as much as me.. And I loved it!!!    Me and JoJo use to go to The store get random snacks and then go somewhere and sit and talk… And talk and talk… I told JoJo everything.. And pretty much always want to!! Jojo showed up right when I needed her and she showed up again in my life right when I needed her… Somehow God knows when I need a JoJo, who loves to talk about anything and nothing and everything. Jojo can make me laugh and cry and feel all my emotions.

   JoJo told me something once that still makes me feel emotions “we all have so many emotions.. And we need to feel all of them.. So don’t let any emotion not be felt it will make them feel emotional.” she then giggled at her own joke and then of course I who was already laughing just hugged her. JoJo is one of the bravest people I know!! And she inspires me to do great things. And lived out that anyone can do great wonderful scary things and that dreaming is always amazing!! I love you JoJo thanks for always being here when I need you!  

The Power Of The People Who Made Me! 

 This is post is brought to you by… The power of people who made me.. Shayweasel


 Born the youngest of five children my sass is shown from the first day and my personality is also shown on my first day out of the womb… I had all my siblings meet me for the first time and someone recorded it.. To say this video is funny is not even all of it.. Its so random and iconic of all of us besides the fact that Vana does love me now.. She did kick me in the head and sean kept trying to get me to move.. I’m gonna say that when my parents had me they knew no one could come close to my awesomeness and thats why they didn’t have anymore children.. Truth is I’m pretty sure God was like here is shay. She isn’t gonna be easy to keep alive, I forgot on a daily basis that running in front of cars, bus, in the road to chase a ballon that needed me to save it from going to the moon (i had a reason so therefore nothing can hurt me..) I am not a wild flower growing like a weed.. I am the weed the thing people see as annoying and confusing and the thing people try to kill but you never can really kill it.. I’ve heard time and time again how people either with speicel needs, or who had food allergies or had at two weeks old had a cold and how these people werent around when “our” grandparents were alive.. I am not a product of anything I am fantastic, I have food allergies, and I have rare diseases people “like” me were around but died of the things that would have killed me or… behind a close door they hid the child who was “different” like they were something to be ashamed of…. Everyone knew I was different and so did I.. when I was four years old, my big sister Vana threw a rock at a mean boy because he called me stupid, he was the same age as me and he could spell mom, dad, and his own name and I couldnt remember what letter came after F…. I now know that its U.. that little boy who came after F! But he was being mean and Vana said to him something along the lines of this “She can’t spell but at least she isn’t ugly..” She then took a rock and threw it at his head… I mean I’m adorably random. I’m shay the weasel part came when I was 11.

  Boy meets world, the little sister to cory and erik is called weasel… Sammiy started calling me weasel and it never stopped… I am one weird randomly lovely human.. I fought to do everything… Read, Write, And have friends I was a really cool under 10 year old… When I was 10 people made fun of me for dancing to no music for tellng scary weird stories at the sleepovers and I had one friend who always listened and always told me everyone else was missing out and that I wasn’t stupid.. This friend AnnaJoh is the main reason I ever had faith that I could have friends.. I went through middle school and high school with two friends neither one lived with me and then when I made any friends after a while I noticed they would leave me.. Never ANnaJoh and I kept reminding myself that maybe it wasn’t me it was just the people. When I was 13 to when I was 19 years old I lived in Seaboard NC 700 people lived in this town..

 I learned then from a lady named Gigi that she didn’t fit in in school but that dogs loved her and she loved them she gave me a dog and he become who I needed.. I learned from a lady named Mariem Hall who had a daughter named Edith Faye who had a very big personakity that after she had her daugther people told her that her daughter who was born with a disease in which her brain had water on it, she is the oldest people who ever lived without having a shunt put in and her mom had her naturally I just wanted to point that out but people told her to hide her child she said her at the time good friend who lived next door told her to hit her child with a rock… She said she moved to Seaboard for the safety and she said she vowed to not hide her beautifully fantastic child.. She didn’t.. And people welcomed edith into there life beause thats what you do as humans..

 

I tell you this because I might not look super different and I growing up was just me and my autism that I’m like yea I got that… I also got no collagen or a working stomach… so who cares?!!

 My life is mine… My wonderful brain isn’t something I’m ashamed of, because why be?

 

This again is brought to you…. By the people….Who made me who I am… The ones who told me to shut up in sunday school and then the other sunday school craft teacher Mrs. Curry… who told me to never listen to the mean comments but to ask the other person why they felt the need to point out the fawls..

  I was never told by my mom or papa that I was stupid, I remembered sitting and listening to people tell my parents that I had arare form of dyslexia that could keep me from learning to read, write, and if they could get me to write my name I would be going above and beyound what they had seen.. I also was the first girl who was diagnosed with this form of dyslexia… My mom told me one day as I sat with a pen She looked at me and said you don’t have to write to be amazing.. I was like well duh I’m awesome..

 I and my mom and anyone who ever tried to help me learn to read and write… It took time and I didn’t understand it…. But I did… 12 years old not to late..

  I was sick always being sick now isn’t new… I had to fight in school, in life, to make friends to be the shayweasel I am now…    

 I know I’m not like you but I don’t see the problem.. I don’t see the problem… Because there isn’t a problem with me.. I am different but not wrong and the people who showed me this.. Are the only people I really care about… They are my family, Stephie who always had my back through out my whole life once I was fighting with sammiy about how this was my barbie and she couldn’t play with it.. Stephie came into the room and she had not been home all day had no clue what we were fighting about but she took my back… And she pushed sammiy and handed me my babrie… which she then told sammiy she was sorry and we ended up getting lollipops out of the thing… Don’t know how..

  I have a family who always stands up and by me… I am not anyone but who I want to be.. Shayweasel… My body has no clue what it is doing but I do… Its keeping me alive.. It COULD very well do a better job at keeping me alive but if it did I might not be who I am today.. So it can fail me but I won’t fail myself by being anything other then what the people who believe and fight through hell want me to be… Me…

 I am in a battle that is scary because I’m in pain… But I don’t want anything else, I could be healther that’d be great but if I never have better treatments and I never get any better… I’m ok, because I’ve only gotten stronger as my failing body does what it does… fails.. I don’t “hope” tomorrow is better and that I’ll be brave.. I’m gonna wake up and smile or get mad or do whatever I don’t hope for better treatment or a cure I just fight and I live… I don’t see hoping for a better tomorrow is doing anything I don’t need hope I’m ok with how things are you see… If my mom would have just said I hope she can read one day I see that as her giving up or not trying for today… I am never gonna hope tomorrow is better or this next year is bettter I am better today right now and I am gonna be ok…  Let me tell ya…. Because myself, my Stephie, my family, my best friends… We all. Together will fight and we just keep going… 

Shayweasel out… 



My Failing Body Fighting!! 

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!!! 

comanniversary!! 

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!! 

Error 222

 

 

IMG_0637

 

Error… In 2016 I have had over 31 x-rays, 15 CT scans, 8 MRIs, been put under sedation 9 times, I’ve had two surgeries, I’ve had two failed midlines, I’ve had over 30 failed IVs, I’ve had more blood draws then I could count and I’ve had three central lines and  my picc line in my right arm is the really the only reason I am alive.. I’m telling you this because I want you to know something… Life is confusing..

 For the past few weeks I’ve gone over in my head of why I am still alive, my cousin Trevor we had a weird relationship mainly because we both didn’t always fit in when we walked in a room, Trevor past away and it was shock to everyone, no one really knows how to feel. But I felt weird, I couldn’t go down for the funeral in Texas and this is the first time I have ever missed a funeral, I am sorta the funeral person, I have been to over 300 funerals in my 23 years, I have had people die all around  me since I was a young child. My papa being a pastor I started going to funerals young.

 But Trevor the weirdo who I could talk to about Pokemon and video games for hours and who made me watch toy story so many times that every time the movie is on I change the channel as fast as i possibly can because i’ve seen it soo many times, but on Friday morning this past week I turned on the TV to find toy story being played and my heart sunk.

   I feel like an error must have happened, I am sick, and Trevor wasn’t he was a healthy awesomely wildly random person who went to Heaven before we all knew what was going on…. I think an error happened because I’m sick, the doctors tell me all the time they don’t know how I’m alive and then someone like you die Trevor? It doesn’t sound fair.

 

  This has to be an error around my life, because people like you and Greg, you guys were healthy and happy and had a good life to live and you could go for so long, but me I’m sick, we don’t know if I’m gonna live, we don’t know how to keep me alive, we don’t know if I will live years or just months. We don’t know if I am gonna be ok, but you had a life to live but for some reason you didn’t get the chance to live it. I am glad to live but I want to live in a world with you guys too.

 I am not sad you’re gone, I’m sad for the people who you have left behind the people who will have to miss you, who will have to have holidays without you. Who will forget you’re not here and go to text or call you, I will feel sad for the that movie I saw that you would have liked, I will feel sad for your parents on your birthday for the holidays, for when toy story plays for the pokemon card I have in my dresser you gave me along with a note card grandma wrote to me. I will feel sad but only for a moment because emotions are  meant to be felt, and I know that somewhere along the story of our lives you came in like a fireball and Trevor you never died down like fireball, stephie has fireball in the freezer and the face some of the people who take the shot of fireball remind me of the first time we went to aunt gale and uncle bud’s house after you and sadie had been adopted, there was this look of pure fear and like overwhelmingly love and like what do I do?!? From both Gale and Bud, but they got use to you and your craziness soon, don’t worry I always overwhelmed them normally. I remember I went on once about how white bread wasn’t good for so I therefore would not eat it. Your mom was confused why I just wouldn;t eat… I confused her more than you did so you always have that going if you don’t confuses people as much as Shay then you are doing good!!

 One summer you guys came to the beach with us for like five days. One morning I had woke up before the sun and went to go on a walk somehow you heard me and asked me to go with me I said sure and to tell someone you were going with me you went and told your dad and then we went to walk on the dark beach that barely had any sun on it, the sand was cold and I had just my flip flops and a bag over my shoulder the bag held an epipen my inhaler and a 5 dollar bill. You didn’t even have your shoes with you, you lived life happily you got upset you had emotions you were smart you were random you talked and you knew what you wanted to say you got bored and you always got in trouble but it was ok, we liked you. You were weird and I liked that you came into the family I didn’t like being the only weird one, you came in and they were like ohh.. We all have a little weirdness in us… thanks for being that weird one with me.

  I don’t know what I’m gonna do now when we get together as a family but I’m hooked up to IVs and medicines to keep me alive I’ve surpassed the weirdness and totally upped you… Trevor, see you soon, if you get bored totally come be a ghost around me, I’ve watched all the ghost hunters, note to self don’t watch them and then have a port put in your chest the next day.. Insane dreams..

 

  Error 222 if It could have been me it would have been but it wasn’t we don’t know why we might never will, we will miss you and we will wish for you, but know that we got this. We are proud of you, I’m proud of your parents and your sister they are handling things wonderfully as are our aunts and uncles and grandparents and you know how they are handling it well? By showing emotions. By being upset, by saying they don’t know what to saying they don;t know what to do. They are being humans, and we all have deep emotions…

 Shayweasel out….

friendversary to Macy! 

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. 

friendversary to Macy! 

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.