I’m very sick at the moment, and no I am not writing this from a hospital bed, I’m writing this from my bed which I have left five times today. I am weak, my body is failing me and I am trying my best to show my body that I am willing to fight the rest of my life to live..  My body doesn’t care it’s still failing. But I am still fighting it.

  But that this isn’t what this post is about, I feel like I want to explain something. I am going to have a steady decline  in my health for the rest of my life, I hope to slow the decline down some, but it will be an uphill battle from here on.    

  Growing up, I loved to ride my bike I still do, even though I haven’t been on a bike since this summer but that’s beside the point. When we use to go on bike rides the uphill part never bothered me, I always enjoyed it. Why? Because it was hard and I pushed and sometimes I had to get off my bike and push my bike because  I couldn’t pled but I always liked going up the hill. I wouldn’t care if I went fast I just enjoyed it.

  BUT.. going downhill scared me, I always worried about going out of control and falling. When I was four years old I have this memory of going to the gas station and it was uphill there and downhill on the way back. And on our way there I was having so much fun and on the way back.. My papa carried my little bike with one hand and held my hand with the other hand. I needed help going downhill but when I went up the hill I was strong. I felt brave and I felt like I could do it.

    In life when you feel out of control is when you get scared and I am so out of control right now but I have control over somethings and they may not be the things I want to have control over but they are the things I can have control over.

  I will not change my life. I am sick, I am weak, I am having a lot more bad pain days and a lot more of unable to do things I use to do…

 I am the happiest I’ve ever been in my whole life. I am enjoying my life more than I ever have. I am laughing more. I have the BEST people I have ever had in my whole life. I have the most amazing friends!! I have never had friends as good as this before!! My friends text me at two am and they laugh at what I laugh at. We can talk about things I never felt comfortable talking with to my “healthy” friends because they never wanted to listen…. I’m so happy to have the people I have in my life.

  I am the most unhealthy I have ever been. My health is so bad right now but My spirit is very good. I am so happy right now, and it’s all because I choose to be. I choose to put myself out there a year ago. I decided that I wasn’t going to let anyone tell me that I shouldn’t talk about my health. And by talking about my health. My life has changed in every way, and all of them are good. I was born with these diseases, and i think I was born to have them.

   By having theses diseases I have been so blessed that I’m not suffering from them, if anything I think these diseases are suffering from me!!! I mean seriously they are know who they are messing with and they are putting up a battle..

  I want people to know I struggle every day, all day long sometimes but it doesn’t mean I’m not happy. It doesn’t mean I don’t laugh. But just because you see me laughing doesn’t mean I’m not in horrid pain. I can smile through pain and I’ve learned in my 23 years to smile when you are going up hill, because I am just going up hill…. Life is hard but smiling and being happy is a choice… And choose it.. Even when its hard to find happiness you just have to find happiness in the uphill life..

Shayweasel out…

 When I was 12 years old is the first time I went to the doctor and the doctor told me my pain in my arm couldn’t be as bad as I was saying it was. When I was 13 years old was the second time I went to the ER for my horrible stomach pain, and the ER doctor told me that nothing was wrong and I needed to learn to deal with pain..

   After that, my pain was no longer a big deal it wasn’t something I thought about. I just dealt with it. I went on with life. I ended up going to the doctor a lot still when my anaphylactic reactions ended me up in the ER, or my stomach pain was just too much to deal with. I knew something was wrong but everyone kept telling me I was fine.

   This joint pops out you just put it back in. Only vomited nine times today you just deal with it. Everything was insane, I felt like I was going insane because no one had any answers and I was asking the same questions, but over time the questions became so much more confusing, Everything was confusing.

   But this past year doctors started being confused by me. They looked me up and down left and right and went what is WRONG with you? They slowly started figuring out that my body was as insane as I was saying. That it was even worse than they thought it could be.

 When I had a test done they freaked out when my body did something they had never seen. I wasn’t all the sudden the girl who was overreacting I was the girl who was under reacting. I was the girl the doctors were staring at going “How are you so calm right now?” I was no longer the person they thought I was. They were all the sudden worried, very worried.

     Then on Thursday after blood work, and test, more test, and more test a doctor who asked for my case, who asked to see me. Sat down with a pile of paperwork in front of him and started asking me questions, started asking me things that I wanted to answer. And when I answered he listened.

  Then he said the thing I’ve been waiting for for so many years, all my life I knew I wasn’t okay but for the first time in forever, someone sat down and said “I have the diagnoses.” He gave me names, he gave me answers to the questions I needed. Then he said “This is the plan.”

   I got a name for the monsters of a diseases that I was dealing with. I got a name for the nightmare that had brought me so much pain, a couple of comas, so many anaphylaxis reactions, so many almost death, so many weird surgeries. It had a named. I felt good, all the sudden I felt relived.

   I wasn’t scared of the monster I was about to try and deal with because it’s like a monster that has been hiding under your bed for years and you knew it was there but no one believed you. And then one night someone comes in and see the monster with their very eyes and all the sudden it wasn’t all in my head the boogie man was trying to kill me, and everyone saw it. Everyone was scared but for some reason this monster since I knew everyone could see it. It all the sudden was so scary anymore. Because I knew I have a team of monster killers (otherwise known as Doctors and people who support me) to team up and take down these boogie men… And I might not always win but I will always fight… So back up monsters, you aren’t messing with the wrong lady but you are messing with me so I’m gonna fight you.
Shayweasel killing monsters out…

Like a broke toy you I can still be played with forever.
I have a teddy bear named teddy his tail fall off like a year ago and the other day my niece Rory and I had surgery on him to fix his tail. She had been telling
Me he needed to be fix because a broken tail isn’t a good thing. So I finally fix it.
The other day she told me something that I thought was wise even if she didn’t mean it to be wise. She was telling me about her white Tiger who sadly turned light blue in the washer a while back she said that it didn’t make it less of a white tiger it just made the tiger a different kind of beautiful.
She smiled at me and all I saw was really pretty perfect little Rory. My niece sees me as she tells me as a different kind of beautiful. She says I might not have my health but I’m funny and she likes me. And I like her.
Last week I had gone into anaphylactic shock I was siting on the floor of the bathroom epipen in hand holding it for ten seconds to my thigh and a 3 year old cutie was watching with cute little eyes and saying “better?” I told her yea better. She smiled and bounced off on her little ball and as Nick her dad and my friend called 911 she wasn’t scared she wasn’t worried and as the paramedics came in through the door she just smiled at them.
My niece is smarter then me because she isn’t scared of a little anaphylaxis she isn’t scared of me going to the hospital because she knows that I got this.
One of her many favorite songs in fight song by Rachel Platten Rory tells me that I got a lot of fight in me and that this monster or disease or monster of a disease has nothing on me and I think she is right, I am fighting a monster that might take my life one day but right now I’m just fighting and I’m like a broken toy but I’m strong enough to live inside this broken toy body and I think I’m okay with that.
My amazingly awesome sister Stephie, my fantastic friend Nick, and a child they brought into this world who is a little human who means more to me then I knew could be true, Rory!

They are all fighting beside and with me and Even for me sometimes, they are like my own personal fight song. They are behind me and I think I’m gonna keep fighting because I have so much fight left in me….

I have my parents, my sisters, my brother, my family. My wonderful friends like Macy, Heather, Rachel, Dara, AnnaJoh, and many more that are fighting with  me. They are amazing. I have this. I’m fighting and I am strong because they are strong with me…

Thanks for fighting with me for me beside me and always doing it with a smile a sweet loving kind voice. I’m strong enough because they are stronger then me!!

Shayweasel out…

 Growing up I was not an overly huggable child, I didn’t always tell people I loved them or hug them even though I did love them. I just didn’t share my love that way. It’s one of the weird things about having autism that makes things hard sometimes you want to express yourself but it doesn’t work super well….

 Here are 7 ways growing up and now that I say I love you..

1. I give you a hug..

If I ever make a note to touch you I most likely like and love you as a person, even if it’s a weird side hug or if I’m not seeming like I really want to hug you I am trying I promise and it’s a big deal for me to even try and hug you.

 

2. I write you long messages

When I got my first iPhone I was amazed by the fact that I could write someone a really long text and it could mean a lot. I express myself better through writing sometimes then I do through talking or other ways. So when I write you a long message it means I really love you.

3. I ask about you

It might not seem much at the time but if I ask you how you are, or ask about your job I really do want to know. I care about you and sometimes I am not sure how to show it so I try and ask what you like, or how work is or what happened during your day.

4. I call you..

I don’t call a lot of people, mostly my parents and like two friends but if I call you and I know sometimes I don’t know what to say but I promise I want to talk to you I am just not always good at saying what I want.

5. I rant to you

If I just start ranting to you even if it’s because I love you very much, I love to rant and to talk but sometimes when I feel passionate about something I’ll just rant about it for hours. I want you to rant to, I want to hear what you’re passionate about and I want you to rant to me.

6. I say thank you

I love to write people thank you notes or just say thank you to them but sometimes I think that they think I’m just saying something but truly I am thankful for you and I am thankful for what you are doing even if I don’t know how to show it.

7. If I say I love you.

I tell people I love them but sometimes I feel like they really don’t understand how much I truly love them. I do love you and if I say I love you, I truly mean it.

 When you have problems that make your mind work slightly different or just not near the same as everyone you have to understand that we try to love you, and we try to say it but every now and then it’s hard so please understand that. Having autism is a strange thing it’s a mind thing and it’s not something I can change but I don’t think I would change it…

Shayweaseling it…

So I guess we met when I was about 16? Is that when you came into my life? But anyhow. I like you but I really don’t like you but I’m glad you’re here.

  You sorta remind me of most middle schoolers I know. Your really annoying most of the time and not really quite. Your awkward to deal with and get mad at me for no reason but then you go through this this like phase of hating everything. No foods, no smells, no outdoors, and then you go through phases where you’re like sorta chill and you act like everything is cool in life but then you get mad randomly one day and like throw rocks at me and like close a door in my face and I’m like what?

  You didn’t really mess with the wrong person if I was telling you the truth. I’m pretty sure you knew who you were messing with when you came

In you saw me like a mile away and where like she has food allergies, asthma, is allergic to the outdoors and indoors. Dude we go to get inside her body!! I am like your perfect person for this disease. I match everything perfectly!! So when you joined I wasn’t shocked to tell you the truth. I was like well we were a perfect match.  

 It’s sorta like going out with someone from match.com and your like you and me are a perfect match but I still don’t like you. Like I know we match up but you are still annoying as heck. Dude stop it

  But then you like a middle schooler wouldn’t leave me alone so I just sorta let you come

Over but you didn’t have to invite a bunch of problems with you. Like can we talk about the  swallowing issue! I’m not cool with it… I enjoy swallowing my food and drinks. So if we can not have issues with it that’d be cool…

  I haven’t always been okay with you been here eosinophils, but I don’t think I am upset with you being here anymore…

Well eosinophilic esophagitis since you’re here can I do anything to help you? Can we make a plan? Okay cool…

The other day I read this thing about how this person was upset because she lost her leg and how she worried she would never look like anyone she knew.  

This got me to thinking see. I guess I look pretty so called normal and if you don’t know I’m sick and just see me at Walgreens you might think I have a healthy Body.

 But I don’t care to look like people in the magazines or even try to look normal at all. I just want to be alive. And I’m luckily to be alive.  

 My life might seem horrid to some but to me it’s my life. I wake up and I sleep, I breath, I dream, I have thoughts, I hope to do and I never plan on giving up.

 So if I lose my leg.  If I lose my arms. If I can’t talk, if I can’t hear, if I can’t see, it’s going to be okay because no one can ever take away … The part of me that makes me me… That’s just me. I can learn to not be able to see or live without a limb or not being able  to speak or hear but that is alright.

 I am more then my limbs, then my body, I am my personality. No one can change me but me. And if I lose my health fully and I am told I will die..

It’s gonna be okay because I am beautiful in my own shay way. And I don’t need to be like anyone else and I don’t need to look like anyone. Because I was made to be me and only me o I am not going after what the world sees as beauty. I’m king after what I see as beauty.

Which to me means having a positive attitude and having a good kind spirit and being. A caring person. Loving each other. Being kind to people. Giving hope and insight into my life

 That’s right there is what I call beauty. My eyebrows are on fleek. But that’s because I didn’t touch them I was just kind I will love my failing body and my failing health and I will be whoever I want to be and I want to be me…

 So I like who I am. And I like what I do. And I like being kind and I like being hopeful and I like being nice and I like giving someone love and hope in a dark time…

Shayweasel out

 It’s invisible illness awareness week, and I’ve already sat in three waiting rooms and had two test run, and have had seizures and seizures but to the naked eye I am not sickly looking, and you might see that as a good thing sometimes I see it as a good thing but other times it’s not so helpful…

 I was sitting in a waiting room at a cardiologist when a man sitting near me said “You’re mighty young to be having heart problems.” I smiled nicely and said “I guess I am.” He then asked what was wrong with my heart, I told him simply that after waking up from a medical induced coma this summer I’ve had very bad chest pain and I have had small heart problems since I was born. I think I overwhelmed this poor man. His eyes got big as he said “Why were you in a medically induced coma?” I told him that I was having uncontrollable seizures and the only way to save my life was to be put in a coma.

   People are surprised when they see young people who are rather sick.. I guess I understand that its rare and it’s weird but to me and in my little world I feel like it really isn’t that rare because I have friends who are going through the same problems as me. We spent weeks in the hospital. We have surgeries and we have procedure  and we have doctors appointments we spend hours doing treatments, taking medicines and doing things to stay at basicline. And sometimes we can’t even stay there.

  We slowly slip into a worse state that causes us pain and problems. We slip into being very sick and being in horrible amounts of pain. And we just deal..

   

  After talking to the man in the waiting room, I was taken back to a room for my stress test the nurse goes “I just went over your chart and you got a lot going on.” I nodded and she went on telling me about the test, she had sorta indifferent way to me and said “You need to run as long as you can and I’m gonna guess since you’re so young you’ll be able to go a good while.” I got up on the treadmill and my body which is weak, and has never been a good runner, got up there and started walking which turned into a run.

   The doctor and nurse who was running the test went from you are so young you should be able to go so long to your heart is beating to fast, your blood pressure isn’t right you okay? Worry filled their faces as my blood pressure dropped some and I told them I didn’t feel good and they told me I could stop. I ran 9 minutes on a treadmill and my heart rate went up to 179..

  I all the sudden wasn’t a young healthy women doing a test I was someone they were asking if I was okay they were asking if i needed anything and if anything felt bad.  I was someone whose EKG didn’t look as good as they wanted it to.

  

  As they let me go the nurse told me she liked my bag and I told her where I had brought it and she smiled at me. I walked past the guy who I had talked to in the waiting room and he told me that he hoped I wouldn’t be so sick soon. I told him I hoped the same for him.

  As a young female who goes to doctors appointments who uses a walker to get around who has anaphylaxis reactions on a regular and who lives life happily. I am not invisible but my illness is unseen to the naked eye. I am the beauty of my own life.

Shayweasel out

   

 I have three amazingly fantastically sisters two of their birthdays are today, and you might ask how i have sisters who share the same birthday well…. I have sisters who happen to be twins, they look alike if you’re wondering which everyone always is. Personally growing up I just always thought that everyone had twin sisters who look alike. But they don’t. 

  I really like my twin sisters, they both have big personalities which is something I adore. But more amazingly they are both super caring people. I have seen both of them give selflessly to something. They spent different summers doing work that I know was at times so hard on each of them. They work sleepless through college and they worked two sometimes three jobs while in college just to pay for everything, they have given up things to help others out included me. They have gone above and beyond doing selfless acts for others.

   Sam is always trying to find ways to help people she is shy but bold outspoken but soft spoken. She is like a light in random corners, I have had the wonderful time of watching Sam become a wife and mother, she loves her children, she adores them. I’ve seen her struggle in life but she has never given up, she is strong she is beautiful and seeing her be beautiful is amazingly fantastic.

  Vana is randomly always on top of things, she is smart, caring, loving and a huge nerd. she has such a big voice but she holds back sometimes she is amazing at finding ways to help others and she is good at being behind the screens. She is an amazing wife and she is gonna be an amazingly fantastic nurse, she doesn’t give up even when things got in her way she doesn’t give up.

  They both are such amazingly fantastically people that sometimes I don’t even feel like I was blessed enough to be born into a family full of awesomely fantastic people.

  My sisters are fantastically, they smile and light up rooms. They laugh and you just like hearing them laugh, coffee shops, target randomness, sweet laughter and fantastic time that’s what I think of when I think of my sisters who happen to be born together and share a birthday along with my DNA!!

  Don’t forget to eat cake, drink starbucks, and love life, because a birthday is amazing, 25 years is a fantastic time to live so here is to both of my twin sisters 26th years of life!!! It is gonna be fantastic I mean have you met them? They are pretty fantastic people.

  I don’t see them doing anything less than fantastically!!!

 I mean I’m weasel because of Sam, she is the one who started calling me weasel all those years ago, and vana calls me shay so me.. Shayweasel am me because of them being them. I am shayweasel… AND I am blessed enough to be who I am because my twin sisters chose to be themselves and to live life how they please. I am so glad that I have had the wonderfully fabulous chance of being sisters to them…

Shayweasel…. Out…

I have a hard time when people say “Get Well” “Get Better Soon” things like that because I don’t know what well is or even better, I don’t even know which I like better I don’t know how to take those phases because like get better… What kind of better.. I mean right now I am better than I was in July when I was almost dead, I’m better than being in a coma, but I am not better than I was a year ago, and I haven’t gotten well but I feel well mentally, I am a happy person most of the time but I’m not better I’m not well, I am sick, I have illnesses.

   So when people tell me these things like that I don’t know how to react. I feel like I smile and nod a lot when people tell me these things but I think it’s mainly because in our society we want people to be healthy, but what is healthy?

  This is what I was thinking about last night, if I was per-say “healthy” right now I don’t think my life besides the doctor appointments would be that different, I think I would be living with my sister Stephie I might work at a daycare and I might eat more cookie dough and I most likely would go to the movies more, but is that really better? Is that a better life? Or just different. I see it as different.

  I know my papa might not see it this way but I think the best thing that ever happened to our family was when my papa almost past away a few years ago when he was bleeding into his lung, yes it was scary but afterwards we all came together, I think our family became insanely close because of it. We were always close but we became closer.

   I don’t think Rory would have been born when she was. Sean might not have moved back to North Carolina and Matt and Sam might not have adopted or gotten Carson as soon as they have. Josh and Vana might not have as strong a relationship as they do. Things would be different. I don’t think life is worse in any way but just different.

 My papa’s body going into shock as I watched him fall to the sofa covered in his own bloody vomit was a scary horrid moment but it wasn’t bad. Things like that happen for reasons and I see no use in trying to act like they don’t happen. I want to find the reason they happen and keep going. Find ways to live in the different.

  This past two years alone have changed me. I have had two surgeries and I have spent over a month in the hospital over time, I have had more doctors appointments then anything. I have had rabies shots, I was bit by a bat to get that. I have been to countless ER trips. I lost my grandma I lost my best friend and service dog Beng and I have been in a few comas and I have seen my family break and rebuild. I have seen pain and had pain but it’s okay.

  I see all of this as an okay thing. Yes I miss my grandma so very much but it was okay, I miss Beng but its okay. It showed me something things don’t happen without reason or I beleive they don’t.

  I wouldn’t be able to get through all this if I hadn’t gone through all that I have gone through. I know better is a relative term but to me life is better than it was, my health is not better but I am a better person. I am more caring. I am more who I want to be. But I am growing still…

  So I guess yes I am better, Yes I am well but health wise I am in pain and my body is failing me horridly but I am loving who I am becoming…

Shayweaseling it….

I remember weird things from my coma so here is the best I can place of what it was like to be in my medical induced coma.

   I was put into a medically induced coma on June 29th 2015 for about four days because I was having non-stop seizures and I was having brain damage from them.

  So here it what it was like for me… Right before I went into the first seizure I had a moment, a weird moment, of bliss like pure bliss everything felt okay, when I woke up again I felt like pure evil had run into my body and all I could think was I might not wake up from this. This might be what kills me..

 That was the last time I was truly awake for a few days. So I remember a coffee shop, my dog Beng was there and sitting in my lap. My friend Macy was talking to me about eating pineapple popsicles, we talked about this for some times till I remember hearing Stephie talk and it was like I was somehow sitting in the car, it wasn’t her new car and Stephie was younger she was talking about work that day and we were driving in her old beat up car and the smell of summer was in the air, she was laughing and telling me about Rory, but she didn’t look like she does now. It was hard to place. But it all seemed nice. Another voice I didn’t know came into play, I didn’t know this person but Stephie whispered something in my ear.

  My feet were cold. I didn’t like that I wanted them to be warm. I kept thinking that, somehow my sister Stephie knew this and brushed my hair and I remember thinking as she brushed my hair and put pretty socks on me that I was safe, no I didn’t know what the socks looked like but I knew stephie and in my coma induced mine those socks were the bomb.

   When my papa’s voice came into play we were both in a bookstore with all of my favourite books, he was telling me about each little bird that sings and how I couldn’t be like the dog whose name he couldn’t remember. He told me I needed to come read a book with him. I asked him if he wanted coffee but he didn’t answer.

  I was sitting in the living room all the sudden all the lights were out and Tara sat in the chair close to me and screamed as the person on the TV jumped and the scary movie we watched played, she asked me how I wasn’t scared and how I was still hanging on. It felt nice and safe I smiled at her. She smiled back I somehow noticed Holly was sitting in the chair on the other side of the room, she asked me if I wanted anything. I tried to answer but I couldn’t..

 I was sitting outside in the grass, my dog Dodie was sitting besides me and she licked my face, my friend AnnaJoh who looked like the last photo I had seen of her on instagram she asked me if I was hungry and I remember not being sure what to say. I felt foggy and the backyard was very dark.

  The stars seemed to dance as I laid down next AnnaJoh on the grass and looked out on the stars above. It seemed peaceful.

  “Shannon, Baby” I remember my mom was talking but i couldn’t find her, I was walking through a dark hotel as I heard my mom’s crying voice, I was looking through the hotel but couldn’t find the room she was in, I was trying to yell back but my voice wouldn’t come out. I walked into a room full of old movies and my mom sat in the corner and she said “Want to watch This movie?” I couldn’t tell what movie was play till I noticed it was Breakfast At Tiffany’s I smiled and sat down beside her, she had popcorn in her lap and I remember thinking that this was weird because I didn’t have a headache from the popcorn like I normally do.

     Gigi, who was the lady who gave me Beng sat besides me we were riding in her car and were talking about something it was sweet pure and simple, she asked me if i wanted to go back to her house or be dropped off at Stephie’s house. I told her i wanted to be dropped off at Stephie’s house. We drove for a long time. Talking about Dogs and about the earth and she kept repeating she was proud of me. She told me we had to make a stop before we went to Stephie’s house.

 The car stopped and she told me I could get out if I wanted to. I opened the door and Beng jumped out of the car and I followed him into a nice hotel room.

 My grandma stood in the kitchen cooking pork chops and turned around and said “You don’t have to have any anymore. You are brave my little Rose…” I smiled and sat down on a bar stool, my grandma rosa gave Beng some Pork chops and sat beside me.

 “How are you feeling?” I asked her she told me she was doing good and that the room serve wasn’t as good as she could cook herself she kissed me on the cheek and somehow I was being dropped off at Stephie’s house, Gigi said “I’ll see you soon,” and I go out of the car and Beng sat and looked at me.

  “I love you Beng.” I started crying it was a long cry, I couldn’t stop crying Beng kept whispering to me I see you soon, all is good. He cuddled up to me and I fall asleep on the ground outside Stephie’s house…

  I opened my eyes to doctors talking to me I didn’t understand them at first and felt scared, I fall back to sleep. I remember stephie asking if I wanted to listen to Taylor Swift and the answer to that is always yes for sure!!!

   I have a weird memory of talking to my sister Vana, we were drinking coffee and talking about books is the basis of it..

   

  Soa yea, that is the basis of my weird mind on insane medicine to save my life and that put me into a insane coma….

Shayweasel out…