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…

Shayweasel

Continuous Stream of Consciousness

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