Coma..tose….

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.

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   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…

Thank You… No Really..

 

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.

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  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.

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  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.

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  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….

Not Failing.. Anyone

 I haven’t been failing my body but I feel like I haven’t been giving it everything I got after I woke up from the coma i felt like my body betrayed me because well it did. It totally turned against me and was like FU Shay who cares what you want. And I just felt like I wanted to turn against my body and not help it with everything it wanted. But this past few weeks I am having to learn to live this different life and get back into the normal habits of living a day to day life and I think I am just jealous of my old body which was horridly not working but it was controllable my body right now is in this like wild weirdo phase and is like I want to have a seizure for no reason and yay anaphylaxis is fun.

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  So my body is failing me like I have said so many times before but that feeling of a failing body is not one I like I get annoyed that it’s not doing everything i need and want it to do. i want to be able to breath and walk alone. I want to be able to eat food and drink things. I want to be able to not worry about having seizures or passing out but i have to worry about that and I do not get a break but that’s okay and I’m working hard to learn that.

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   I am trying to learn that it is okay to live inside a failing body till the end of my body but I am living with my body and we need to work together to be alive but right now I just feel like it wants to do whatever it wants to do. And that’s been hard for me to accept.

   So this morning I made up my mind that this is my failing body no one else can live inside my failing body. I have a chance to show myself that I am strong enough to live inside my body even when I don’t feel like it.  

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   I got my spoonie friends, I got my fight song T-Shirt and I gotta show myself that I am willingly to fight like hell to survive and to do well in this world just because my body and mind and world can fail me at times I do not need to fail myself.

  Stephanie hasn’t failed me once and Nick hasn’t failed me once, my family isn’t failing me my friends aren’t failing me so therefore I have to fight and I have to not fail them and I think I have been failing them lately. By failing myself.

  I think when you fail yourself you fail the people around you. And Stephanie and Nick they have been here for me and with me and they haven’t done anything for me to fail them so I need to stand strong because this is just my failing body so I need to work hard to not fail it.

  I am not by any means saying this is gonna be easy to live with my failing body but I’m saying that I am gonna fight and I am going to live….

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  That is all that is really asked of me is to live, live inside a failing body that has overcome so much already, but it’s not about what I do it’s about how I do it.

  I am strong, I am brave but most of all I am a fighter and I am a fighter because of the amazing people who helped me be a fighter. I am a fighter because of Stephie, Nick, my papa, Vana, My mom, Sammiy, Sean, Aunt Helen, Macy, Dara, Rachel, Matt, Josh, My friends, My family they make me stronger. 

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  I guess what I am trying to say is that I won’t fail my body because I have too many people who helped my body live this long so if I fail myself and my body then I fail them….
Shayweaselish..

Keep On… Keepin On…

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 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.

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   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….

Why Having Friends With Illnesses Is Helpful To Me

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 The other day I told someone about my friends, this person knows me sorta well but not like super well the person was confused to why half the friends I talked about had chronic incurable diseases, She asked very kindly “Why do you have friends who are ill?”  And I tried to give a good answer but I didn’t do so well..

  So here is my answer…

 When you are in school you make friends who like some of the same things you like. When you are a working adult you make friends with people who like the same stuff you like. If you like going to clubs or going to see people perform you make friends with people who like the same. Its a human thing. You need something in common to keep being friends and to talk. When you are diagnosed or just become ill, you suddenly can’t relate to a lot of your friends or to anyone. But when you make a friend who also is ill you can relate, Oh you vomit four times a day? Oh have you ever done blank? Its a weird thing but you can talk about stuff that others would see as not socially acceptable.

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  My friends and myself talk about vomiting and getting stuff in a feeding tube, we talk about pooping and talking medicine and ports and picc lines and we talk about pain and walkers wheelchairs getting tired, we get it. And it’s because we understand it. I was in the hospital and I was FaceTiming with my friend Macy and she wasn’t weirded out when I showed her my picc line and when I vomit while we are talking.

   We need people that also have chronic illnesses even if we don’t get to see them a lot in person it helps knowing you aren’t alone. My friends and myself some of us have none of the same diseases and other friends we have one or two of the same diseases, but we all can understand each other on some level, sometimes just someone being able to understand the tired feeling is so helpful, when you are so tired but can’t sleep when pain sets in. it’s nice to know you aren’t alone.

   

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  Yea we talk about random things, I had a long text convo with my friend today and we talked about nothing but vomit.. it was on going for about an hour and it wasn’t like we were being gross we were just talking about our day. Life has a chronically ill person isn’t just watching netflix, it’s normally for me anyway watching netflix with a heating pad and vomit bucket.

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  When you have people who make you feel like it is okay to be well you. Is a very happy fact. So I guess I am trying to say the reason I have friends with chronic incurable diseases is because I need friends who can relate to me on some level. I need people to tell me “Are you napping?” “Did you take you’re walker?” I need people to make me feel like what I am living isn’t boring old shitting life but it’s a good life nonetheless. And my friends make me feel that way. They make me feel like we can press on. That every day is weird and random and pain is a part of every day but we can get through it. I think that when diseases make you feel horrid you know that life with this disease can be ever so changing.. Life has been fantastically amazing even in comas seizures and other things it doesn’t make it less just different..

  So yea…..

Shayweasing it…