Author: Shannon DeRose

I’m Not Killing My Diseases…

/ Shannon DeRose / 1 Comment

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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…

/ Shannon DeRose / 1 Comment

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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..

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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…..

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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..

/ 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…

/ Shannon DeRose / Leave a comment

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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

/ Shannon DeRose / Leave a comment

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  1. I am adoring staying in bed all day and not having the energy to move!
  2. This infection is so good!!
  3. I love that they don’t have an FDA approved treatment for my disease!
  4. 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..
  5. I only have to take 13 different kind of pills!!
  6. Oh my goodness I love getting hospital bills!
  7. Yes I love staying up all night because the pain is just too awesome to handle
  8. I love going to the ER they have snacks!!!
  9. My doctor just called and told me I have another rare disease this was my christmas wish!
  10. I love vomiting
  11. I just found out I’m getting a feeding tube and I’m so not nervous whatsoever!
  12. I love surgeries!IMG_5842
  13. Sleeping in till 4 pm is so great! I just love waking up tired! its the best!
  14. Well my doctor told me I’m gonna die and I’m just over the moon!
  15. I love the fact that I haven’t had a pain-free day in two years! Its so nice!
  16. Missing parties is so good!
  17. I love people not taking my disease seriously
  18. I highly enjoy people telling me that I’m lazy!
  19. I have never felt so good in my life!
  20. My body is so fantastic it does everything it needs to!
  21. Ohh this pollen in the air is so awesome!
  22. 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…

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

Thanks for reading!

Shayweasel…Out!