I’m a lover of most of the tv shows that you’ve made. I’m a huge fan of Between and I totally wanted to watch your show that you put out this summer called Stranger Things. My family watched it, my friends watched it, everyone told me great things about it. It sounded so amazing… but something I really need to tell you. 
    I have seizures that can be easily triggered by flashing lights, and your show stranger things had so many flashing lights I was unable to watch your show. But what’s worst is that I felt left out. Like I wasn’t in on something. I miss out on weird things as someone who is living with a progressive terminal rare disease and I would love to watch stranger things. 

   But I can’t risk a seizure for a tv show. In my world someone I’m watching tc with will almost always say something to me when flashing lights come on and show so I can cover my eyes or turn away. 

   

   Netflix it’s not just you who doesn’t even know they are overlooking people like me who want to watch your shows. It is so many other people. It’s so much in tv shows, music videos, movies and random events. It’s so hard to know that I can not do something like others because I could have a seizure. And if that seizure happened to send me into status epilepticus which I’ve been in about nine times 3 of those made me in a medical induced coma on life support. And one was intubated after my air way collapsed in on itself. 

 

   What I want is simple.. a warning. I want to be able to look at something and it read or say “there is about to be flashing lights,” or “this show could trigger seizures or migraines.” And most of all I want you to somehow say “I’m sorry for the inconvenience.” 
   And a warning to you Netflix is that seizures triggered by flashing lights isn’t rare. There are others like me. We don’t get to watch the show. We feel left out by the over looked world we have to live in. 
  I’m not mad at you. I love you Netflix. I’m always up for Netflix! You do so much good and made hospital stays wonderfully easier and make me be able to watch live shows over and over again. But please don’t over look the triggers of seizures or migraines or anything else. It’s hard enough. 
 ShayWeasel going to watch Gilmore Girls on Netflix 

 

I was talking with someone, a lovely human named Moriah, the other day about relearning things. And how when you become an adlut you relearn all kinds of things, like how to be who you want to be and weird things like that. I personally am relearning how to be helpful. I can’t clean very much, I can’t give a bunch of money to someone. I can’t watch any children very long. So I’m stuck how am I suppose to help when I need others help so much?!

 

 

 

 

 

I am now understanding I need to learn to be positive, I need to be kind, I need to be grateful. I need to be nice. I need to love my parents, my sisters, my brother, my family and my friends. My job no longer is to work with my body, but its to work with my heart. I need to be someone who is joyful, I need to be open, honest and loving. I need to ask for help. I need to not get mad when things do not go my way. I was put here by the Lord for so many different reasons and one of them is, I need to be kind. I need to show mercy, I need to not get angry when the treatments don’t work or when I don’t feel like I’m being useful.

 

My mom use to tell us when someone wants to do something for you to let them because you are taking a blessing a way from someone if you don’t. I think lately I’ve been taking blesses away from people because I want to be indepent and I can be, but not as much as I have been. Nothing is wrong with needing help. Nothing is wrong with crying. Nothing is wrong with being someone who doesn’t do everything right.

 

I’m learning that my job right now is to let others help me, and for me to show grace, and show how grateful I am. My job is to be positive and be a Pollyanna, be loving and kind. Be merciful to others and not get upset or mad for no reason. My job is to be human, but to be better..

I told myself today as I upset a few people that my emotions are allowed to be felt but the emotions are me are allowed to be upset too. I love my family, I love my friends. I love all the people I get to meet. But I must remember to show love and kindness.

 

I’m relearning what it means to be human, and I believe it might take some time and I do say I’m truly sorry for the people I hurt the most,

 

I have people who are willing to help me, to care for me, and to give there life to care for me. So I must love them. I must be grateful. I must be Godly, I am selfish, and I am rude. But I am relearning the world…. One step that I can’t take alone. I need hands to hold me up, SO one step with help at a time. I’m relearning to be human, to be loving.

 

Thank you very much to Sherri, Stephen (my parents) Stephie, Vana, Sam, Taylor (my sisters) Sean, Matt, Nick, Josh (my brothers) Rory, Wavey (my nieces) Carson (my nephew) Helen, Gale, Terri (my aunts) my friends and for each and every person who prayers for me and my family, and for each person who cares.

 

 

Thank you

 

Shay weasel learns something

 

 

 

What your getting married!!! I’m proud of you for how you’ve held up your life, and I’m proud of you for showing Christ through your whole life and this Godly man seems pretty fantastic. Now I have yet to meet this awesome Man but I will be meeting him this friday.

I also will be seeing you for the first time in 12 years on Friday. I’m going to react some crazy way I’m sure and I’m totally ready.

Now I am totally not married but I want to tell you some weird wisdom from somehow who keeps almost dying. Life isn’t scary, neither is death. Just be ok. Accept everything about Joe, and remember to smile. Agree to disagree you don’t need to be perfect, you are wise you have the Lord on both your sides.

Do fight, do get upset be human, show emotion. Let emotion run through. Now as someone who loves very much I want to always be honest if you don’t like something even this post let the person know.

Don’t hide stuff, don’t blame stuff on anything, but do show emotion. Please show emotion, be happy sad scared angry and weird. Be a dork, be a weird, and totally freak people out.

I’m blessed to know you. I’m amazed by your kindness your strong loving blessing to me way about you. You are like a beautiful bible believing women who is doing great things. you’ve already changed the world by being you. So keep up the good work.

Talk things out, as a couple, as friends, and as a human. Let yourself always be friends with Joe, be a wife, and be yourself. You are no matter what a human a lovely human. So don’t stand in your own way of being anything you want to be.

Take each others gifts and showcase them. Care. Give. Hold. And pray. Pray a lot.

As you and Joe became one about a month ago, you both will stand together forever but you will also stand alone, lean on each other but still hold yourself up. So that if one of you needs to lean fully on the other person you still can.

 

I’ve never been married, so I truly don’t know but I have watched a lot of tv, so same thing……. Not at all..

I love you, I know you love Joe and he is seems to love you. I will stand (most likely will be the only one sitting on stage during it) but in sprit I will be with you no matter what. We had a friendship for 12 years were we didn’t see each other once. So remember that if something happens and somehow you and joe are apart remember its ok, you don’t have to break to heal. You don’t have to be face to face to show God’s grace. You are stronger then you will ever believe and together you guys could rule the world.

I mean I know maybe I sound cheesy but I’d rather let you know that today, tomorrow and whenever, things are going to be weird, confusing hard life is ok. Aannajoh, I’ve known you since you were five, I didn’t give up on your friendship then and I won’t now. I love you.

 

ShayWeasel (Shannon) with love…. And cookies!

 

 

 

 

 

 

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

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…..