A Very Bumpy Bus Ride…. Yea…

August 9, 2015August 9, 2015 / Shannon DeRose / Leave a comment

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???!?!?

July 19, 2015July 19, 2015 / Shannon DeRose / 1 Comment

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…..

Granola Recipe!!

June 26, 2015June 19, 2015 / Shannon DeRose / Leave a comment

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

Ingentes
4 cup oats
½ cup maple syrup or honey
2 cups of either coconut or nuts or dried fruit or whatever
¼ cup oil or coconut oil or butter
In a lauge bowl mix oats and honey/maple syrup then add everything else
Bake at 350 for 30 minutes or golden brown
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!

To The People Who Say I Talk About My Illnesses To Much

June 26, 2015 / Shannon DeRose / 2 Comments

On a couple different occasions people have told me I talk about my illnesses too much..

We need to go back, to a moment….

When was the first time you heard about autism? How did you learn about peanut allergies? What was the first time you knew what Crohn’s disease was? What about cancer?? ….. Who told you these things? And if you say you read it on the Internet..

Then someone had to talk about it for you to read it.. Someone had to write the words you wrote. Someone had to discuss what was going on inside their own body or someone close to them..

These things NEED to be talked about, how many life have been saved since people started talking about breast cancer? How many earlier screens have saved a life? How many people have known the symptoms of meningitis and knew when to go get help? How do you know to go to the doctor when you have the flu? Because you knew what to watch for…

Someone has to talk about these things for you to understand them…

People don’t know normally what is Gastroparesis is or what it’s like having 9 food allergies let alone 40 food allergies.. And the only way we can find a cure the only way we can get better is… By talking about it..

And on the other hand.. When I do everything throughout the day I must think.. Is this food safe? Did I touch something? Did I get up too fast? Am I having an allergic reaction? Is my headache my normal headache or something more?

My body is failing me, I can’t go throughout a day without thinking about it.. I am not talking about my illnesses because I’m bored or have nothing else going on but because no matter what I do no matter how I handle my life. My illnesses control part of it. I must think about it because if I don’t.. I could kill myself. If I touched a walnut if I wasn’t paying attention to what I was eating, if I didn’t watch what I was doing. I could hurt even kill myself…

My illnesses don’t take breaks, my illnesses don’t take days off, my illnesses don’t get magically better with medicine.. My illnesses without meaning to have to control part of what I do because I am living in a body that is broken but no way to fix it…

So yes I talk about my illnesses a lot yes this is part of my life on a daily basis if I didn’t talk about it you wouldn’t know what it was or what I was going through. You wouldn’t understand how easily a peanut can kill me or corn, a tree nut, or even some food that I didn’t crew well… Something could kill me easily and by talking about it it could save me…

There is this part of me that wants you to know that the main reason I talk about it, is because if we don’t talk about it because if we say nothing then nothing will change.. We won’t get treatment… we won’t get a cure.. We won’t get better life because no one will be doing research about what’s going on inside our bodies.

We not only need awareness we need understanding… We need help, because we need people to understand give us as much awareness as possible because then maybe we could save another life from pain and from being without a diagnoses and without help… Because people with chronic illnesses, rare diseases can go years in horrid pain without a diagnosis without any help, and without understanding…

So thankfully we have people who talk about rare diseases, chronic illnesses because maybe one day when I say I have EoE people will have as much understanding as they do for when someone says they have cancer..

I didn’t choose to get a rare disease I just got a few… So if I don’t talk about my rare disease no one will know..

So yes my diseases are sometimes the highlight of my life but it’s because it affects my life in every way…

Thanks for reading about my talking about my illnesses, diseases can be invisible, which is why they are called invisible illnesses, we must first understand that awareness is the key..

If you want to talk about this more with me, leave a comment or email me, we can discuss the horridness of chronic and rare diseases,

Shayweasel out…

I’m Not Killing My Diseases…

June 24, 2015June 21, 2015 / Shannon DeRose / 1 Comment

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…

The Way Of The Left…

June 21, 2015 / Shannon DeRose / 1 Comment

The road isn’t easy when the road was never really paved.. I personally never walked there on that road… Its not that I didn’t want to walk there it’s just that I walked in the way of the left..

The way of the left wasn’t well. Right so therefore no one knew how to take it..

The road you my papa, have had to take has never been easy, from broken bones to hurt legs to hurt hearts to hurt arms.. You stood weak and strong. Your brain works in the way of the left but you wanted to be in the way of the right.. So you walked in the way of the right you tried to be the same as what you saw something I never did.

You stood up and spoke when needed to and held your breath when things happen and when we begged you to breath you breathed in deep. And when your soul begin to wonder we didn’t even blink because papa we know you. You make living look beautifully you make things understandable. You don’t always speak from the heart but always with your heart. You hold dear how you see things..

You have struggled so hard in the way of the right your walking lately has been tough since the doctors told you that your body is failing you, but my papa please don’t fail your body you’re stronger then that.. .But the way of the right has been so hard on you. Telling you that your emotions are silly or unacceptable..

Papa… I have an offer to make you… And I promise you that this offer is once in a lifetime… WIll you come over… To the way of the left? Will you come and start seeing things like me? And will you accepted that papa the way of the right maybe isn’t perfectly fit for you..

Maybe if you come to the left you can start standing up for the way of the left people to the way of the right people? Maybe you could give a point of view people haven’t seen.. Maybe just maybe you could show people that there emotions are as acceptable as can be… Maybe you could come over and see like me..

Because papa when I see you.. I don’t see a man who doesn’t fit in or a man who is sick no.. I see a strong warrior who loves music and can read a book in a day, I see a strong pastor who can explain the bible in ways I’ve never seen and I mean that in a fantastic way. I see a man who is an amazingly fantastic papa and an amazingly wonderful papa to his grandchildren as well.. I see a fisherman who loves the world in a way that is more awesomely gorgeous then one knew they could be. I see a stronger man than people even know. I see a warrior who has been hurt by words but papa I see a strange little smile when you believe in me. I see someone who never doubts me. I see someone who loves his family. I see someone who is so beautifully strong that I don’t know how you do it,…

So papa will you come over to the way of the left? Will you step out of your way of the right thinking and start seeing trees from above and seeing birds from afar and watching the moon through a photo lens and when you hear a sound start wondering what it is will you not get better but get more awesome will you live in a way that makes life seem like everyone is panda when they are talking about you… Will you think in the way of the left?

If you don’t accept.. I will fully understand some people can’t handle walking the way of the left, we sometimes forget we are in a race and we slow down and we don’t smell the roses because they have bees but instead we walk off the path and we find a strange bird and we start to talk to it. We follow yellow brick roads to nowhere. We enjoy barefeet and we enjoy simple things.. We don’t walk fast because we aren’t going anywhere we are just thinking.. Breathing living….. We aren’t in a fast pace world.. The way of the left is something you get throw into….. I don’t try fast I try strong. I don’t try hard I try soft.. I don’t give up.. I just get stronger…..

Happy Fathers Day, Papa, may the world never be your stomping ground but instead be a place of peace and joy as everything goes fast remember the way of the left….. Isn’t waiting for you.. We are all off in our little worlds.. But you can join my little world… But don’t leave it…

I love you….

Shayweasel out..

New More Weirder? Food Allergies..

June 19, 2015June 16, 2015 / Shannon DeRose / Leave a comment

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…

Hospital coffee…

June 17, 2015June 14, 2015 / Shannon DeRose / Leave a comment

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…

Things You Don’t Hear Spoonies Say

June 14, 2015 / Shannon DeRose / Leave a comment

I am adoring staying in bed all day and not having the energy to move!
This infection is so good!!
I love that they don’t have an FDA approved treatment for my disease!
Thanks for telling me how to fix the diseases that I have and that you random person who has no illness…and knows nothing about, I love people telling me info that my 7 doctors hadn’t thought of..
I only have to take 13 different kind of pills!!
Oh my goodness I love getting hospital bills!
Yes I love staying up all night because the pain is just too awesome to handle
I love going to the ER they have snacks!!!
My doctor just called and told me I have another rare disease this was my christmas wish!
I love vomiting
I just found out I’m getting a feeding tube and I’m so not nervous whatsoever!
I love surgeries!
Sleeping in till 4 pm is so great! I just love waking up tired! its the best!
Well my doctor told me I’m gonna die and I’m just over the moon!
I love the fact that I haven’t had a pain-free day in two years! Its so nice!
Missing parties is so good!
I love people not taking my disease seriously
I highly enjoy people telling me that I’m lazy!
I have never felt so good in my life!
My body is so fantastic it does everything it needs to!
Ohh this pollen in the air is so awesome!
Please I love people thinking my disease is all in my head because you can’t see it.. But believe me its not like I had to go through hoops to just get a doctor to take me any kind of seriousness…

Just somethings that don’t normally come out of spoonies mouths… (Note Spoonie is a chronically ill person!)

Thanks for reading!

Shayweasel…Out!

Finding My New Moon..

June 10, 2015June 10, 2015 / Shannon DeRose / Leave a comment

When I was 17 years old I went to California everyone I knew was shocked by what I was doing, I wasn’t one to step out of my comfort zone much, this was a big step. I at the time was living in North Carolina and California is a far way away. So I went and had a wonderfulish time. I met some great people and some not so great people but when I came back, it had been a year of living at home without any of my siblings all of them are older then me and had left for either college or jobs, it was sad and it was weird, but I think honestly I just missed them.

My sister Vana who told me she would pay me in Ice Cream to read twilight wasn’t joking, she brought me the book from the library when she came home one weekend and some ice cream.

right around this time I was starting to become ill, and we weren’t sure why. I was going through some test and things, and would take the Twilight book with me to each appointment, it was then that we found out that I was allergic to about nine foods, some being corn, wheat, soy and nuts. If you know anything about food you know that that cuts out over 75% of processed food. My life changed real fast.

But I sat and took this news, and went home and read Twilight more. My sister came home a few weeks later after I had finished the book she brought me the next book New Moon. This book was her favourite but she wouldn’t tell me why. We went the store and walked up and down the ice cream aisle looking for ice cream I could eat we didn’t find any that day but I told her I would read New Moon.

I love New Moon, it’s become this thing that I do when I get real sick or when I’m having a bad day, I pick up New Moon and I read. I read for hours. I think it’s become like a safety blanket to me. Its something that comforts me.

I think when I read New Moon, I basically had gotten my own new moon, I was set on a path not one i would have choose, I was set on a path of the sickness, my body was then starting to fail me. I had changed my life and it wasn’t by my choosing. I found my own new moon, in a sky full of stars and lots of darkness..

When I went through stuff as a 17 year old I read it and now I read it. Its why me and my sister Vana can write I need to read New Moon to each other and both of us understand that we aren’t doing fabulous.

I’ve learned a lot about food allergies since then and have found ways to have and make everything. But it’s just that when you find something that comforts you.. stick with it.

New Moon is like my safe place, Bella understands me. Vana understands me. My life is fading away when I read it, and for a moment I can forget about the pain…

I have found my own new moon, I have been on this weird way of living but its still good. I don’t look for happiness all the time, I look for the new moon, because its always there even when I don’t see it right away. I just have to look past the darkness in the sky and look past the stars and the planets to find a weird new moon just being in the sky. Life goes hard but remember it can always get better and worse, but the better can be made from the worse. You don’t have to look for the darkness it just shows up, but you can look for the light, that little new moon. That safe place. Don’t look for dark look for the moon. Its barely light but just enough….

Thanks for reading..
Shayweas out…

Shayweasel

Continuous Stream of Consciousness

Author: Shannon DeRose