Hey Nick, Stephie…

I’ve been meaning to sit down and write you guys for sometime but the words that I want to say just seem like to little for all you both have done for me. I am thankful for the sleepless nights and the lovely thoughts and all the time you spent making my life, my health, my happiness easier and more enjoyable. I notice all the times I wake up from a seizure with you holding a napkin with my lovely vomit on it. I am thankful but I don’t know how I could thank you enough.

  Everything you have done for me is more than I could ever just put into a small amount of words. Thank you Nick for stabbing me with the epipen and auvi Q thank you for knowing what to do and say and for always staying calm.

  Thank you Stephie for coming to the hospital after work, before work, and even during work and staying with me, bring me coffee, holding my hand, buying me socks, buying me clothes, brushing my hair, telling me you stand behind me.

  Thank you both for making such an adorable child I just feel like this should be added in because she wouldn’t be so fantastically amazing without you both and she wouldn’t have such a kind heart if it wasn’t for both of you. She wouldn’t love so deeply. You guys are raising her gracefully and lovingly you both are doing a great job making her a person that is more amazing than any other 3 year old I know.

  Thank you for having amazing friends who stay with me and who will come over and hang out with me and who don’t freak out when I have seizures or when something happens. Thank you for never giving up on me.

   I hate that phrase I don’t know where I would be without you because I know I wouldn’t be as happy as I am today without you both. You guys took me in before I was sick you took me in after I became sick. In 2011 you guys let me come live with you guys and you always made sure I was safe.

  You both have done more for me then i could write out. Thank you for never giving up on me. Thank you for caring for me and for loving who I am as a person. Thanks for the endless hours of watching Stargate with me Nick and thank you Stephanie for watching Orphan Black with me whenever I want. And thank you both for always listening to me rant and always being here when I needed someone.

  i am foreverly grateful for y’alls ever amazing kindness. You guys are true fighters, true heroes and you both have made me a better more loving person. Thank you.
Shay….

Shayweasel out….

 Having this blog is not just something I do as because I’m bored, I do it because I feel like writing is something I have to do. It’s like my thoughts demanded to be written, so I write, and I write. I love writing it’s what I’ve wanted to do since I was young, I thought about having my books on a shelf and taking a photo next to it. Seeing my name in a magazine and the biggest thing I have always wanted is to help people, understand people.

    I feel like strangely my passion is wanting to showcase someone’s life and to show them what it is like to be like someone else. I just want everyone to understand each other. It’s my goal in life I feel to help do that. Help show someone else’s point of view, to be able to be an understanding caring person. That’s my goal. I want to show people how fantastically and how horrid people’s lives can be.

   Wanting to be a writer hasn’t come easy for me, I have dyslexia and its really bad, I have a kind of dyslexia called Specific Developmental Dyslexia I was diagnosed when I was a young child. I wasn’t sure if I would ever read or write and the people who diagnosed me told my parents that if I could learn to write my name then I would be doing more than they thought I could do.

  But slowly at the age of 12 years old a book called the Foot Book by Dr. Seuss made sense in my head and I was able to read it. I didn’t stop reading, and I was writing by hand soon, it was harder for me to write by hand. I struggled and at times I felt like giving up, but slowly I decided that giving up wasn’t in me. And that nothing could ever try to keep me from doing what I love and writing is what I love. So I kept working and I worked hard.

   When I was 17 something awesome came into my life. A laptop. It was simple, it was there and I sat at the dining room table at two am on a Wednesday night and the world went into another place the keys they didn’t move so when I typed it was easy. Spell Check and autocorrect made my life more grammatically correct. I started writing and writing and soon I had written books that I wish to have published, but I just was writing. I wanted to just write. I was writing and it was like nothing I had ever felt before, It was like my kind of happy place.

   As I wrote something clicked in my head and for some reason the world around me didn’t feel so scary. I was no longer worried I wasn’t going to make it in this world, because I knew that my writing and my brain could do lots of things. I didn’t give up..

  Last year I got so sick and I lost so many people close to me, but something inside me knew that I needed to start telling people what it was like to live inside the world of the spoonies and the world of someone dealing with chronic illnesses.

  Videos on YouTube from people like The Clairty Project and The Frey Life made my goal seem real, they did it. The Frey Life does it every day, they show the daily struggle, and it makes me feel like if i keep going that I can help people understand the hurt, the pain, the life, the beauty, the fantastically parts of life. I want to show the ups the downs and the lots of looking for the bright side. 

   I really like this thing I read once about how which side is the bright side of the rainbow, like is it during the storm or is it after the storm? I think it’s during it, that’s where the brightside of the rainbow is. I think the brightness isn’t where you imagine it to be. When you’re eyes start to adjust to the darkness you start to see more clearly, and things became different and amazing.

  I’m not who everyone thought I would be, but I’m who I want to be. I will not stop doing what I love, so if you want to follow along to my beautifully fantastically life!! Then please do… I want to write because my soul demands me to write, so I will write. I will keep on keepin on… I am not sure where I am going but I’m making great time… And I’m just as confused as you…

Links to The Frey Life are here  – https://www.youtube.com/channel/UCFJY0O-pkdXs6YuM5KW7r7g

Link to The Clairty Project are here – https://www.youtube.com/channel/UCsowH-H5X0OXMreWz_ukWPw

Go Check them out my newly friend Jasmin’s blog, she is an amazing person who has fantastic taste in music, and authors! She is also living with a very rare disease called Fibrodysplasia ossificans progressiva (FOP) Go follow her fantastically writing here  – http://jasminfloyd.com 

Shayweaseling it….

Dear Nurse,

You don’t know me. We have never met you weren’t my nurse. My best friend you were her nurse and she told me that you were mean to her and I’m not okay with this so I need to tell you something.

  My BFF is having a hard time. Her doctors started a treatment that isn’t working and it’s making her worse. She can barely stay awake for more than four hours. And she can barely get around her house. She had horrid time at the ER when she has been in dire pain and she didn’t need you to be mean to her.

  Her treatment is painful and she is skinny which makes when you put those needles in her stomach epically painful. Let me put a needle in your stomach and see how you feel about it. Let me add that the needle gets to stay there for like an hour… Or 3.. It’s not easy. Did you know that the last treatment made her really sick? Did you ask her if you were hurting her? Did you just think she was another thing on your daily duty?

  I’m not trying to be mean and I know I am being mean but you don’t understand we don’t want to be sick. We don’t. But we are and we need help from nurses and doctors to survive or else we would die. And dying isn’t something we need in our lives as women in our 20s.

  We don’t mean to be as sick as we are but we are. We aren’t too young to have our illnesses we are older enough to handle them but when you are mean it makes us feel like we can’t trust any nurses or doctors.

  I mean you must remember a time when someone was mean to you and it hurt? Think about it. That moment when you didn’t just hate one McDonald’s but you suddenly hated all the McDonald’s even though it was only that one McDonald’s that was bad to you. It’s the same way we feel about nurses if one nurse hurts us. we are hurt.

   I know you might not have thought anything you were just in a bad mood having a bad day or whatever. But. It’s not okay. It hurts us.

  So nurse who was mean to my best friend remember that you aren’t in pain everyday. You don’t have a treatment that was supposed to make you better but made you 10 times worse. Remember that she is in pain everyday and you don’t know that she is going through her life with diseases that might never get better…

   So please don’t be mean, don’t be short with us. Don’t get mad if you forgot to do something. Her brain isn’t getting enough oxygen for her to do anything is amazing. She goes days were she just sleeps because her body is getting so bad…

 I really hope that in the future you aren’t like this to anyone else because when you’re sick everyday it makes life so much harder. Remember kindness…
Signed Shayweasel

 First off, this isn’t really a kind thing to ask anyone but since you asked here is a confusion answer – NO…

     I have diseases, diseases that are not visible to the naked eye, illnesses problems whatever you want to call them. You can’t see them by just looking at me.

  I’m not gonna say sorry for looking like a normal person, but it hurts when you act like because you can’t see that I am not well that I’m either faking it or that it’s all in my head.

   Because here is the thing….

  If this was all in my head, it would be so much simpler, If this was me faking it, then I could stop faking it. And go back to my normal life. I could be alright, I could breath easy, Litelty. I could breath simply in and out. I could dance and I could walk great. I could go on a four mile hike, I could eat peanut butter, I could eat anything I wanted. Cheetos… I could eat food… I could not worry about flashing lights, I could watch anything I wanted. I could do anything I wanted.

      But I can’t do any of that because unable for you to see with your naked eye, is my insides. My insides are going haywire, they are making a mess inside me. My stomach is so slow that sometimes it leaves food in my stomach for days, my esophagus and gastrointestinal tract are being attacked by my eosinophil cells so badly that they are becoming rather small and barely able to move. My lungs are slowly just becoming slower and slower and we barely know why. My brain is telling my body to seizure.. I think differently

  But  I look normal, and looking normal has gotten me in a lot of trouble in the lifetime I have had. Before when I couldn’t read I was normal looking and sortish normal acting, testing showed I was anything but normal being diagnosed with a rare type of dyslexia and getting diagnosed with Autism and synesthesia, I looked normal but my brain was anything but….

   SO yes I know it might seem like I am faking it, but I promise I’m not and when you ask me if I’m faking it or if it’s all in my head, I want to remind you just as I don’t know your past you don’t know my body. You can see me on a good day when I take a selfie and post it to my social media or you can see me at the party that I used up all my energy for a whole week in. But what you don’t see is all the bad days, because I’m trying to be positive  and trying to show how good I am doing.

  I’m trying to protect someone like you who doesn’t have to see my pain I deal with everyday and someone who doesn’t have to deal with these horrible chronic invisible illnesses that lots of people like me deal with everyday,,,

  We have to rush to the restroom, we have to try and make sure we don’t make people feel weirded out by what we deal with daily.

 I’m not faking it, your eyes can’t see the inside of my body.. and I wish they could sometimes…

  I mean every now and then its nice to feel like no one can see all the pain and all the stuff I go through but I still don’t feel normal.

Part of me really does wish I was faking it because then I could stop, I wish I could stop my illnesses from killing me…… From putting me in pain daily.. But I can’t so I will keep my positive mind set and you can go learn about my illnesses and about invisible illnesses, and know that we aren’t faking we are in pain…
“But you look so good” isn’t a compliment anymore it’s a painful reminder that people don’t understand how much pain you are in… I don’t feel okay, I haven’t felt okay in a long time. Please know that…

This has been Shayweasel…..

    I thought I would give you guys an update, so I’m not in the hospital which is cool.. But I’m still sick, The doctors aren’t sure what to do with me, we are working on finding the right medicine combo and right now thats okay. I have status epilepticus seizures, which are basically really long seizures. I am okay through, my papa has been sick and these past few months have been a weird ride but it’s a ride I wouldn’t change.. I might be sick, I might be ill but I’m happy and I don’t see a reason not to be happy.

   My body sucks sometimes. Sometimes it just turns off and goes into a coma, totally normal… But you know some people have MS, some people have Crohns and some have weird rare diseases.. I have bad days where I’m sad that I can’t do everything I use to.. But I have lots of good days and I have good moments, life is about loving all the moments not just the good ones.

   Through out my life I have had so many weird and random things happen to me… I’m not saying its easy, I’m saying it’s livable…

  I have had seizures, every couple of days. I have allergic reactions about once or twice a week, which they haven’t turned into anaphylaxis in a few weeks so thats good. I’m not giving up, I’m not really looking for a cure.. I’m looking for treatments, I’m looking for better understanding, I’m holding on to the hope that everyone wants to understand they just don’t know how to understand.. But yes, I am sick, yes I have chronic illnesses,

and sadly that chronic part means they aren’t going to go away… Chronic is sometimes a simpler way of saying incurable. I might get a little bit better.. I might become more ill. I might not be able to do  everything I want to do everyday, I might over do it and borrow spoons from tomorrow but sometimes you just have to live..

   My life isn’t horrible because I’m sick, God made me this way, because heck everyone knows that when you give me a challenge I’m gonna find a way, even if it’s not the normal way, to complete the task at hand… I’m not letting myself quit now, I have so much I’m gonna do…. So My health is… Not good, but right now it’s livable outside the hospital, yes my epipen might come into play and my seizures might show their nasty head, I might blackout from time to time and I might not get out of the house for a week at a time but I’m okay with this…

    Thank you rather much for the wonderful prayers, good vibes, and happy thoughts all of you guys have sent my way… Know that I feel them deeply in every way…
Shayweasel out…

1. You almost always have selfies from a hospital/ER on your phone at any given moment….Admit it..

When you have a chronic illness you get all drugged up from the medicine my personal favourite selfies of mine are when I’m super drugged and you can tell.. Like someone should learn to take our phones away but it just makes for a good text to your best friend the next day.

   2. You  lose people close to you

When you become ill, people stay for a little while but when you can’t hang out and you’re to weak to text them back they slowly fade away, even family and close friends. And thats when you 

     3. You find the world of spoonies.

spoonies are people who are chronically ill, people who deal with being ill, and when you find this world online its like magic, you find people like you, you find people who enjoy the weird things, they take photos of their feeding tubes and their ports like its nothing and for a moment when you are having to deal with this world you feel slightly normal…

      4. You set goals like Showering, Taking Meds, Eating anything..

Your goals might be small to some people but when you have a chronic illness and take a shower its like a big freakin’ deal. Its hard to shower, its hard to move let alone do things that are physically hard..

     5. Watching Netflix/Hulu/Cable has become a sport.

I can tell you all the good shows out and I can total win any trivia game on TV shows/movies. I’m really good at Netflixing…. Its a passion.. At two am..

    6. You learn that people don’t care when you don’t get better fast.

People for some reason seem to not understand the chronic part of chronic illnesses, they for some reason forget that chronic illnesses don’t get better in three months and rest, and they forget you… And slowly people just aren’t there. But slowly you find the people who stay and stick with you and those are the people who are our heroes..

     7. The guilt of having a chronic/rare/incurable disease is worse than the pain from the disease sometimes.

I have a few moments where I felt horrid because of the guilt, I couldn’t wash dishes and you feel guilty because of it. You want to be there for your family and friends and you don’t want to make people do things for you. All the money they spend, all the sleepless nights, we notice them and we are really thankful for them. But we do feel bad that we can’t make everything so much more confusing..

    8. You learn that people stare at you for weird reasons all the time.

You always get stares, if it’s because you’re in a wheelchair, or using a walker or if you have a port connected to a backpack or if you have a feeding tube sticking out of your stomach at the beach or swimming pool… Or for no reason at all… We learn to deal with the stares and we have to learn to laugh.. about them… But please don’t stare.

     9. You learn to enjoy little moments

I love being able to wash dishes or go to target on good days and I love facetiming with my friends who also have chronic illnesses and talking to them is so little but so nice. The T-Shirts that your sister got you and the spoon necklace. Its the little things. The smoothie my sister brought me to bed this morning that meant more to me than words can say… It’s all the little things… It’s all of them…

    10. Doctors call you more than most friends.

I got a call from my allergist the other day and I was talking to them, and even this morning they called me. The nurse totally knew who I was. And this happens a lot…

     11. You sleep more hours than are awake some weeks and vis versa

A while back I slept for like a bunch of days in a roll.. Or wait I was in a coma (coma joke…) But sometimes I can’t sleep like this week, my body doesn’t want to sleep unless it’s like two in the afternoon. But last week I was like non stop sleeping. All the time I was sleeping so hard…

   12. You accept that your life from this point on is a chronically amazing one…

I might be chronically ill but I’m totally chronically amazing, I will be sick it’s just a matter of how sick I will be… But you know I can find the happiness in each day, I hate to because it’s silly not to… I will be okay because I will fight till the day my body has no fight left in it… And even then I’ll fight like hell.. And I know I have some amazingly fantastically people who will fight for me and with me and along side me… I’m accepting that I’m sick, I’m ill…

   That changes me… But in the best way possible… It has showed me so much that I never knew. It has showed me how to breath deeply and enjoy the air. It has been so amazingly wonderful and my life is good.. I like my life… I like the world I have… I enjoy my world…

 I wouldn’t change my spoonie world for a lot… I was born and my journey is unfolding exactly as it should be!!…. I am strong enough to live in my body…

So yea… Shayweaselish……

1. Its food, its not trying to kill you stop attacking everything I eat. I don’t want to die I promise.
2. Eosinophilic cells calm down… Just calm the heck down.. Everything is fine also stop attacking random body parts I need my body parts.
3. Body if you could give me some kind of warning before I had a seizure that’d be greeeeeeaaaatttt!!!!! Thanks
4. I promise body when I stand up you don’t have to make my heart rate go up to 220… That’s not reasonable..
5. Umm.. Just a word of advice YOU’RE fine don’t freak out over the cat… I promise the fur… Oh shit you’re already attacking the fur…
6. If you calm down and maybe not black out I would really love that.
7. Showering isn’t meant to make you pass out/blackout/have a seizure. Thats not a logic thing to do… Nope… Not logic..
8. Keeping food in your stomach for four days is just not something you have to do, Now body you need to learn to push food through. Oh you’re paralyzed… Shit, welp I’m out of luck..
9.  Do you just like using the Epipen/Auvi-Q? Is this fun to you?… Nope I didn’t think it was so maybe if you didn’t make so many mast cells you could not use the epipen/Auvi-Q less…. Okay?
10. Did you just seizure? Or did the TV just skip? What is going on?
11.  How on earth are you still alive?? How body are you so strong… How do you keep going??

 As much as I hate my body I have to remember that it’s super strong and has gotten me through more things then I ever thought it could.

   When you’re a person with chronic illnesses you sometimes forget how much your body is doing and how much your body is really trying. Even though I am fighting my body, I am also working with my body… I guess those two things go hand in hand….

thanks for reading…

Shayweas out……