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…