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…. 

 

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…..

 

 

 

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…

 

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!  

 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… 

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!