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….