No one has asked me personally what is going on but I know people are wondering. So in a weird turn of events I went to the ER for going into anaphylaxis, after being there for a few hours I went into some seizures which is when I stopped breathing I was admitted to the ICU that night and we came to find out some of my organs had decided that it looked like a great time to shut down and stop working.

  I had been a surgeon two days before being admitted about putting in a double lumen mediport for medicines and possible TPN and fluids.

  The hospital Drs didn’t want to let me go home before the surgery for the mediport because the only way I was able to get my medicine for the seizures was through the IV because every time I would put anything in my mouth I would vomit and if i can’t keep my seizure medicine down then my seizures are almost uncontrollable and can in turn, turn into me having to be intubated and being put into a medically induced coma.

  So on Thursday Dec. 3rd I had a fantastic life charging surgery to put a double lumen mediport in. The surgery went sorta well I had seizures during the surgery but the doctors sorta thought I would. I was put in the ICU.

 

 

 

  On Friday night at 9:30 pm my port was hooked up to something that is hopefully going to keep me stable enough to keep me out of the hospital. I was hooked up to TPN which is IV nutrients as my body seems to not be able to take food or anything really orally without me being sent into either anaphylactic shock or vomiting or other problems.

  The TPN is being made just for me as my list of allergies is so long and we didn’t want me to go into anaphylaxis from it. Each bag is made by a pharmacist just for me. Each bag has sodium, a type of sugar, it has what most people are able to eat by mouth every day but for me it’s what I need. My blood is taken weekly to see if I need anything extra added to the bags. Like sugar or some different vitamins. Because of my POTS I’m on a high sodium bag which is really helping my black out episodes and seizures.

   Almost all of my medicine is given to me through my port, I take about three medicines orally but they are either something that doesn’t come in a IV form or it is something that I have to swallow for my lungs/oesophagus.

 There isn’t a long term plan for me right now as we basically are just trying to keep me out of going into anaphylaxis and having uncontrollable seizures. We have to watch me very closely to make sure I’m not getting any worse and that my kidneys and liver keep doing there job and don’t try to shut down again. 

 

   We don’t know what these diseases will do to my body but we are basically just trying to keep me stable enough to be out of the hospital and ER.

  Right now I’m really happy to be able to go to Rory’s birthday party on Sunday and I’m so glad and hoping I’ll be able to be home for Christmas and New Years!!

 

 It’s sorta funny in a weird way a few weeks ago I went on a short walk with my papa it felt like old times when we would go on these really long walks and we would talk. On this short walk we had to stop a few different times and I think I fall only twice. As we walked we talked and we shared our fears and things. When we came back to the house shortly after that I went into anaphylactic shock. Epipens were used and I was rushed to the hospital by Stephie. A few hours after that I stopped breathing and went into seizures, and my body was shutting down. Life changes fast.

  And when you have chronic incurable diseases they don’t just charge fast sometimes they go to a dead end street and you have to find a new way to get where you’re going. There isn’t a treatment for my diseases that either works or doesn’t work there is no death or no death. It fully depends on what your body is doing that day. How bad you are gonna be in that moment. My liver could stop working any day and it would not surprise my doctors and other people but it could be fine for the next 40 years.

  Life isn’t about living every day to its fullest being fully happy and never getting upset or sad. Life is about living just living. Be here and doing what you can to laugh every day and to feel each emotion as it comes. I am living with these diseases that will kill me one day but we don’t know when or where that day will come and we sorta just hope it isn’t in the near future.

  I’m not scared of my body failing me. I’m just scared of me failing my body and I am surely not gonna let my body down I will fight and I will fight like hell till my body is to weak to go on and then I will fight even harder. Days are gonna be very hard and I’m gonna cry and be upset. I’m gonna want to feel like failing but I won’t. Because I have failed at a lot of things but my body is not gonna be one of them.

 I will cry I will be upset I will get angry (thanks steroids!) and I will be okay. I will fight and I will not fail my body because if there is one thing anyone knows about me it’s that I’m way to confusing for anyone and have been proving doctors wrong since I was two weeks old!! I’m a rebel!

 Don’t be afraid of what tomorrow holds because right now this Is life this is okay and TPN medicines and a central line in my chest are keeping me

Alive and for that I’m utterly grateful and thankful.
 Shayweaseling it!!!

 

1.  You’re going to cry a lot. And it’s gonna hurt. You are gonna have days where you wish you could be healthy.

The crying will become less as you learn to deal with your illnesses but some days are gonna be hard some days are just gonna be crying fits. And that’s okay.

2.  You aren’t gonna be strong all the time

so you think because normally when you feel the weakest is when you are truly being the strongest you can be! You don’t have to be so strong all the time. Let yourself feel each emotion that you have!

3. There are gonna be days where the pain is too much to handle

You will have moments where you don’t know how someone can feel as much pain as you are feeling and you will think you can’t make it through but somehow you will make it through! You will make it through.

4.  You are gonna out do yourself sometimes and you are gonna pay for it.

You are going to go to target or go to hang out with friends and then the next day or even later in the day, you are going to feel horrid and you are gonna cry and feel pain, you have used all your spoons for the rest of the week possibly.

 

 

5.  You aren’t gonna be like everyone else.

And  you never will be even if you magically get to be perfectly healthy this world you have now is gonna change you for hopefully the better, you aren’t gonna talk about the same things your friends talk about, you are gonna know what a port is and how to say medical things that others don’t you are gonna learn.

6. When you get the diagnoses

And you find out that this might be never ending you will be overwhelmed but you have to remember that people once thought the world was flat. And people and Drs can be wrong, you might not die from this disease but you might. Accept it.

7.   Don’t doubt yourself go with your gut

Never let anyone make you feel like you are less, if you feel like something is wrong or you don’t feel “right” trust your gut, go to the dr and/or ER. Trust yourself.

8. Don’t be scared to say no to something .

if you don’t feel like that’s what you need. I have told a doctor that I didn’t think that treatment was the best idea and I’ve had them look at me like I was being mean but if you don’t want that treatment or whatever don’t be scared to speak up.

9. You aren’t alone.

The world of spoonies is a big one and you are gonna meet some people who are mean just like anyone else in the world but know we aren’t all like that keep searching till you find the right friends and supporters who help…

10.  you don’t need to act like you got everything together

Be strong but not to strong and be brave enough to ask for help. Know when you need help and when you need to be strong and know when you need to cry.

11.    And finally you are going to be okay…

You’re going to love the weirdness of the diagnoses that you have, you are gonna be happy and sad, you are gonna have good days and bad days but you will slowly accept everything and you will be okay. You got this.. You truly are strong enough to live in your body.
Shayweasel out!

 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…