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.

  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 

I want to thank you. I’m amazed by you. You don’t have chronic diseases but yet you have stuck by me, you have texted called facetimed and come and seen me in the hospital, sent me pretty things and gave me beautiful things. You have been a friend. 

    I know that you don’t understand all that is going on with my health, but yet you try to understand. You try. You have no clue how much that means to me. You have no clue how important you are to me. I am amazed by you daily. I can’t believe that even when all else fails you don’t fail me. 
    You’ve never walked away like the other friends who don’t have chronic diseases.  

   I remember the times AnnaJoh FaceTime me while in the hospital, she didn’t make me feel awkward or weird she just talked to me like she always has. She asked me to be in her wedding, even through she knows I’m sick she treats me like she always has fantastically. I met her when I was six and don’t know how my life would have been if I didn’t have her!!!

   JoJo drove four hours to come up and see me!! She made this wonderful art piece for me!! She told me I’m strong!! She moved to China and wasn’t really able to talk much, when she came back she got in touch with me. She cared about me. Even through we hadn’t been in touch it felt natural to talk to her about stuff. It felt good to just be friends, I never felt weird about it. 

  These friends stick by me. Hold on to me, they care about me. Tara and Holly always came to visit me in the hospital. They always came to make sure I was ok. 
   I lost people when I became sick but I didn’t lose them. My friends are a blessing. My friends are a blessing. Together we rule the world. I’m so blessed to have the friends I have, to love them to be with them and most of all to have people who care. 
   Thank you guys for being friends with the people who have diseases who live a fully different life but you know you stick with us. 

   I’ve never been one to give up on people and I’m so glad that they never gave up on me. I know it’s hard to be friends with someone like me. Someone who is ill and someone who has lingo that you might not understand but never once have you made me feel weird because of it. Thank you! Thanks for being my friends! 

Shayweasel is loved..

Toes, sand, shells, beach wheelchairs, waves with my waves mask on.. enjoyed myself… And now as I sit writing this from the ER I think about how blessed I am to be able to go to the beach, these diseases don’t take vacationsOr days off.. you live in a world of never knowing what is going happen next… over the course of 17 months I’ve been in three Comas, used over 200 epipens, been diagnosed with a lot of diseases, I’ve been on lifesupport six times. I’ve had four NJ tubes (feeding tube that goes up your nose and down your throat to your small intestines), I have had five central lines, have had sepsis, have had to had breast tissue due to my double luman port being infiltrated (a central line in your Chest) I spent almost 7 weeks in the hospital and during that put on an epi drip, if I made it out alive then they’d be studded. My diseases have no course of action they take and it can kill you in one Moment. 

    
  But laughing at the seaguls, standing by the waves held up only by my parents. My parents had no idea what they had signed up for when I was born, I was sick from the getgo and slowly over time got worse and worse. I miss Stephie I miss Nick. I miss Rory. I miss va beach, sadly some specialist for some of my diseases are located in NC so we moved here. My health might control my body but I control how I handle my failing body. I don’t see this as starting over I see it as just going on.  

   The sand, the waves, the beach and all he beauty I need… the hospital isn’t where I wanted to spend my time. 
   But overall I’m grateful, Beaufort Nc you now have a human in your town with rare diseases and lives a rare life. Mask and central lines might be seen at all times…. but they keep me alive… 
  Even if the day ends at the hospital, it doesn’t mean it ended badly, or that everything is over. I’m doing everything for my failing body, and I’m strong enough to do this because I’m willingly to know when I need help. 

   Just keep going…. just keep going

I’m not trying to get anyway fast I’m just trying…. to make it there… 

Shayweasel feels blessed 

Some people told me they wished I talked about other things besides my illnesses on my blog so this blog is for those people.. Enjoy

I hate cockroaches. They are so nasty and I hate people telling me what to do….

I’m not good at sports… Mainly because I really don’t like care at all. I don’t care if I win or lose. Part of this is just me the other is because playing board games with older siblings never went well…

I don’t like spiders in my bed. I’d listen to music all day if I had nothing to do. I read a lot…

I really hate cockroaches and lately I keep seeing them and I’m not okay with this.

I don’t like some people when they act like I’m not suppose to be able to speak freely.

I think I’m a pretty awesome
Person till someone is mean to me then I forget every nice thing anyone else ever said.

I was chased by a dog who wanted to lick me but I thought it was gonna kill me. And I think that was the only time I ran that far since forever.

When I played volleyball for a year (I’m not good at sports) I always got out of running by going to the restroom.

I hate cockroaches and people who tell me what is right with my life when they have no clue who I am.

This has been wesday the day where I weasel rant about what I feel and I feel like hitting someone… But writing is better.



Shayweas out