I’m the youngest child in my family, I wasn’t the normal go along with everyone youngest, and when I was little, my twin sisters loved the book “A Very Bumpy Bus Ride” it was a favourite among all of us but they really loved it. One night as my mom read it, It made me think, about two nights before this a spot had been found on my lungs, I don’t think my parents knew I knew… But as a small four year old child, I heard and I listened, I knew it could be bad…

I have always been a thinker, daydreamer, nightmare having, I get it from my papa, but I like it.. I’m glad I’m this way…

My life has been in my mind a very bumpy bus ride… Sadly this ride sometimes I lose the fish out of the bowl and sometimes I go smoothly down the road but other times the bumps throw me out of the bus but somehow-so far- I have ended up back in the bus..

Everytime my Auvi-Q or Epipen come into play the chances of me dying are still pretty high, every time I have status epilepticus seizures I have a chance of dying, brain damage, respiratory failure, aspiration pneumonia, or coma. Every time my body attacks an organ the chances of that organ failing are very high…. My body is failing me…. But I’m not failing it…

Everyday things can kill me, a nut, a seed, a fruit, a veggie, so many things… But it’s still a bus ride, and the bus is still going… At the end of the book things turn out good, the book more so taught me to enjoy the bumps in the way.. Enjoy the things that are a pain… Enjoy the bumps because maybe just maybe the bumps aren’t bad they are just bumps and if my bus breaks down.. It can’t always be fixed but I’m sure I can find a way to adapt…

I like this very bumpy bus ride…. Because I’m not on this bus because I’m bored.. I’m on it for life… If a treatment comes and makes my life less of a very bumpy bus ride, I won’t turn it down, but if that treatment never comes…. I’m ready… I’m trying to be… I will live my life not like I’m dying but like I’m living… I will live….

Thanks for reading…. I’m going back on the very bumpy bus if you need me…..

Shayweasel out….

two weeks shay? it has taken you more like a month to write a blog post…  On a weird cold summer night I lied down and had a seizure, and the seizures didn’t stop for four hours, a medically induced coma and a tube in my lungs breathing for me… Maybe me very tired, woke up on a stormy thursday morning being cold and confused don’t remember much till that next week. After they let me go home which was a good idea I’m sure they thought so anyway..

On that rainy monday my seizures made an epic return and didn’t stop, with a tube breathing for me and a body full of medicine and them not sure what to do with me and my broken body they let me go after a week again… More days in the hospital then out. I want people to understand something, I’m ill… My body can in a day go from being at target tired and weak but being out and about to being on a tube that breaths for me…

This isn’t me being over dramatic, this isn’t all in my head, this isn’t me making a big deal out of nothing, this is my body slowly and utterly trying to slowly kill me. This is my body being broken. This is rare diseases, no treatment… No idea what to do or why its happening. My body is failing me, my body is tired but that’s okay,

I’m fighting still, I’m fighting hard, for treatment, for life, for the understanding of doctors understanding for me being something that doesn’t stop this is a body I have no control over sometimes this is people not seeing how ill I am till the coma made them see that I’m not okay…

I have rare diseases this is my life, this will be my life till I can have better treatments.. I’m going to keep fighting you won’t see me give up, but you will see me live, be alive, you will see me live, and above all you will see me be amazing, I don’t care if it’s from a hospital bed, or from bed or from the doctors offices, whatever it maybe I will live. I won’t give up on life I will be alive till the day I die, we just hope that isn’t soon..

I’m ShayWeasel, sometimes almost dying happens sometimes I am not okay, but I will not stop fighting but I will be sick its just a matter of how sick how ill how much I can do… I will be fighting if you need me…

Shayweasel out…..

So I was diagnosed with 9 food allergies at 17 years old, I was overwhelmed at first by trying to cut out corn, wheat, and soy alone was real hard. But when I was diagnosed with 13 more food allergies in January of this year I was a little less overwhelmed because I knew how to handle it better… But when I was diagnosed with more food allergies on June 10th…

I basically went come on body….. You need to calm down… Food is okay please don’t kill me because you don’t want to eat….

So basically I have about 7 maybe 8 safe foods right now… But I wanted to give you a recipe I am using for granola… SO… Lets go

First off to make granola you need to set the oven to 350

1. Ingentes
2.             4 cup oats
3.            ½ cup maple syrup or honey
4.            2 cups of either coconut or nuts or dried fruit or whatever
5.           ¼ cup oil or coconut oil or butter
6. In a lauge bowl mix oats and honey/maple syrup then add everything else
7. Bake at 350 for 30 minutes or golden brown
8. Let cool for 20 minutes then eat!

So thats my granola recipe… .Its pretty good!

Food allergies will always be strange weird food allergies make everything random. I’m allergic to black pepper and so far its been my strangest food allergy… If you have any strange food allergies let me know in the comments I loved to talk about strange food allergies!!!

But no matter what don’t get overwhelmed by food allergies you can handle anything…. Life is hard, chronic illnesses are hard, but believe me things will become easier….well easier in a way but never all the way easier. Life is just over all hard…… Don’t worry your not alone..

You can email me or comment on here if you feel alone or have any questions…

Thanks for reading!!!

This has been Shay-De Foodie Friday!

My disease could kill me…. But I’m not trying to kill my disease

Cancer you kill it that’s how you do it…. You kill the cancer cells….

Me? I’m having to learn to live with my body that isn’t broken just needs to have some stuff done to it so I can live…

I’m not trying to kill my disease if I did that I’d kill my

Own liver… Or lungs…

No I’m not fighting my disease in

Just fighting to live…. But my disease isn’t going to kill me… My body is…

Dying is a side effect of my disease one day… Anaphylactic shock will happen… Maybe that’s how I will die or maybe my organs will fail me…

But one thing is really true I’m not going to die because I didn’t fight I’m most likely going to die because my body fights and attacks everything

I personally think my body is Amish and just believes all worldly things are horridly evil…

Sadly my body will fight till the death but somehow I need to explain to my body that the air isn’t trying to kill you.. Also peanuts aren’t horribly scary body if you could just calm down when someone in the room opens a bag that would be great….

I’m not in a battle with my diseases I’m living with my diseases…. I have an unwanted house guest but they are nice sometimes… sometimes they bring me good friends over and I meet cool people because of it…

So when people tell me I’m gonna get through this.. I’m not getting through anything… I’m living with things.. When you tell me get well soon or that I’ll get better…

I might not get better… My body will most likely get slowly worse unless a treatment gets found for my disease, or if maybe someone finds a way to cure me. One of the diseases I have at the moment has no treatment… None there is some things they do but no treatment.. No drugs… Nothing… I felt like the doctors stand before you and go “I got nothing..”

So don’t tell me I’m gonna get through this.. Because getting through something means that at some point it ends.. But a cure isn’t something that’s going to happen for me… Unless something big changes..

I’ll always be sick.. Its just a matter of how sick..

I’m not fighting with my body, I’m living inside a body that is in a weird way fighting the world… Mostly food… It attacks a lot of food…

But when you tell me that i’m going to be okay and that you hope I get better soon.. I just want you to understand that I might not. I might be sick forever. This is my reality.. I’m living with chronic illnesses… I’m not fighting them..

Thanks for reading…
Shayweaseling it…

I didn’t write a Shay-De Foodie Friday last week because… Well it didn’t happen mainly because I learned I have more food allergies and was diagnosed with a disease. I was overwhelmed by the thought of food..

Let alone writing a blog post about food.. I get nervous when I get told I have around 40 food allergies.. I’m allergic to so many thing I don’t know what safe food is..

Or that’s how it feels. See even someone who has food allergies for a while gets nervous when I get a new food allergy.. Food allergies are serious… I try to remind myself that i’ve had food allergies for a while and I’m still alive. I will make mistakes, anaphylaxis and allergic reactions will happen and that’s okay.

Food allergies are a big deal they do change things and that’s okay. It doesn’t matter if you have one food allergy or 90 food allergies they make a difference. I over the course of a weekend and a couple days am having trying finding food. I don’t want to hurt my body. I want to keep it safe.

Food allergies aren’t an easy task, they are hard sometimes and sometimes they are easy. I don’t mind having food allergies, sometimes I wish I had less food allergies maybe like 7? I could do 7 easier but what I am allergic to is okay… It’s okay to be allergic to something. Life can get better life can be okay with food allergies.

I get to live my life food allergies come up daily but so does my knee pain, so does my family so does my life… Everyday when I think about my food allergies I’m glad I’m able to think about them… Soo… Yea

This has been Shady-De Foodie Friday…
Shayweaseling out…

When my papa was in the hospital when they told us he might die, I went down and got some coffee… Hopsital coffee.. it’s strange kind of coffee, strong yet good..

Waiting for my Niece Rory to be born… I went and got coffee… Hospital Coffee.. I sat down and thought of everyone there..

When My niece Wavey was taking her sweet time to be born. I walked down and got coffee. Hospital coffee.

When my grandma was sick and we all knew she was gonna get the pleasure of going to heaven… I got some hospital coffee

And this past Tuesday when my doctor told me I have a disease called Eosinophilic Esophagitis I went and got coffee.. hospital coffee.  I sat down… And I looked around and nothing was really that different I just had another name for another illnesses thats making my body a medically fun one..

I find peace in hospital coffee.. I find peace sitting with a cup of coffee with one sugar and some milk or half and half…. I take comfort in a strong taste and a good taste in my mouth, I find peace with all the people walking past looking happy and dazed some tired and some hooked up to IV poles.. I find peace in a strange thing..

I find peace in hospital coffee.. I find this taste of coffee when everything isn’t going my way. I just partly want some hospital coffee.. My papa is still alive, both my nieces are growing and being amazing. My illnesses are having a field day with my body, it’s attacking things and it’s having fun…

When I sit with my hospital coffee, my world is normally changing becoming different if it’s getting someone into the world or letting someone leave, or if it’s you or someone else getting a diagnosis or if its sickness… Hospital coffee is my go to answer for the questions of my life that I never meant to ask…

So next time I’m holding a hospital coffee in my hand and next time my world is changing next time my body gets worse or next time my epi pen must come into play know I’m totally gonna need some hospital coffee to go along with it…

So thank you doctors and nurses for drinking tons of coffee so that the hospital always has coffee…

My little world full of doctors appointments and hospital stays and scary days and funny ways I’ve got hospital coffee to make me smile..

Shayweasel it…

1. First off get your epipen or AuviQ and carry it with you. No matter what. Even if you’ve never been in anaphylactic shock you can go into anaphylactic shock. Every reaction is different and reactions can get worse.
2. Read Everything, learn everything about your food allergy. The more you know the better off you are.
3. The top Food allergies in the U.S. are shown on the back of the box, if you have an allergy to say corn or sesame you have to know all the names they go by or else you could have an reaction because of it.
4. Food allergies can be serious, they can be deadly, put that in your mind. Let yourself take your food allergy serious.
5. Please don’t feel silly for asking questions, don’t worry about bothering someone at a restaurant or at the coffee shop, its okay just leave a good tip. You aren’t bothering them. Going into anaphylactic shock is more of a bother then asking questions.
6. It’s okay to cry in the store when you find out you can’t have something you wanted. Thats totally acceptable.
7. It gets easier, I know you’ve most likely heard this, but it does. I promise it gets easier everyday.
8. You won’t get a break. You won’t get a day off, but personally after having food allergies for over 5 years now I go days without really thinking much about it.
9. You will start to check every label even when you aren’t eating. Its sorta funny.
10. This isn’t the end of the world, that was in 2012 right?
11. Food allergies… They are just there.. Keep up the good work you can do it.

I promise that food allergies will get easier with time. But they also get weirder and funnier, I’ve laughed as I rode in the back of the ambulance, epipens will never really get easier to use but you will have a strange love for them. Because when they save your life you will love it for doing so.

This has been Shay-De Foodie Friday..

Shayweasel it!!

I like books, oh my goodness I like books, I read all the time. If I don’t have a book to read I get highly annoyed with life and worry that I might attack someone.

Reading doesn’t come easy for me but the challenge is a challenge accepted. I enjoy it because I get to go to so many different places. I feel like I get the chance to understand things I never thought I would understand. I get to go inside someone else’s world.

Its an amazing thing. How we get the chance to read, we get to be someone else for a day, for an hour, for a moment in time your life is left behind and you are reading a book.

I know the world is a big place with lots to see and lots to do, but when you pick up a book you get to see and do things you might never get the chance to do.

I love books. I’m thankful for all the books. I like real life books and I like fantasy books, I like books on real people who have lived before, I like books about animals, and I like books with lots of random photos.

The first time I read Anne Frank I cried. It was the first book to make me cry. The first time I read Each Little Bird That Sings my world changed, I had been going through  something in my life like the girl in the book. I understood her and I felt like she understand me even though she wasn’t real. I felt not so lonely.

My librarian who knew me by name when I was in living in Seaboard a small town full of older people who all loved me, the library was a happy place for me. I hear its that way for a lot of people.

The first time I read Twilight I didn’t think this is corny I thought this is like a weird way of writing a story. I fell in  love with Bella because she thought like me. And the first time I read New Moon I called my sister Vana like nine times during it and went on about how much Bella was just like us. It was a strange thing yet she understood.

Books take you to other world. They make the world different and I love it.

When I read Sarah Dessen books I can’t help but love everything about it. I fall in love with each and everyone in the book. Some of the places Sarah Dessen has set her books have been places I’ve been and that made me feel so amazing.

When I found the book How NOT To Be Popular in 2009 I laughed out loud while reading. I felt so much emotion. Its still to this day one of my top favourite books. I adore it with my soul Its amazing.

Hoot, Holes and Because Of Winn-Dixie are some of the books that I fell in love with first. Hoot because it was amazing story with loves of weirdness and so much love. Holes because it took me to all kinds of places and I loved to go somewhere I had never been. And Because of Winn-Dixie because I had a small dog with a cute smile and who hated stormy weather.

I’m thankful for books. Because without them I would have never left a house in Paris at Half past Nine I would have never put my left foot, right foot, right foot, Right! I would have never walked to grandma’s house through the woods, I would have never been to Hogwarts. I would have been to Chicago in the future. I wouldn’t know words and names that mean more me to me.

 I wouldn’t be someone who can say lines from books, be someone else for an hour. So I’m gonna go and get lost in a book. I’m gonna go and become someone else for two hours and when you see me again maybe I will understand someone else better..

  Getting lost…

Shayweaseling it….