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…

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!

Chronic Illnesses Are Chronic..

June 7, 2015 / Shannon DeRose / 2 Comments

So yesterday I felt so bad that at moments I was worried more than normal about my health. I was having a bad day, but the day before that I had four allergy attacks that led to my eyes not wanting to be used. The day before that I slept for 15 hours straight.

I have Chronic illnesses, and for some people seem to not understand that chronic which means daily, hourly, momently. It doesn’t stop. Its like having anything when you get diagnosed with a chronic illness it’s like getting a tattoo, you really can never get rid of it. There are sometimes surgeries you can do to make it go away, but they are lots of money and sometimes you end up getting scarred, good thing about tattoos is you get to choose what the tattoo is and if you want it in the first place. A chronic Illness has no choose. It shows up on its own and it’s happy to be there.

CHRONIC.. Means daily, it does mean I get to have some good days, but most of my good days are thanks to the medicine I took or are due to the fact that the day before I slept for 18 hours or it’s a weird random thing that happens out of no where. Most of the time when people see me I’m having a good day, because on my bad days I don’t normally get out.

So even if i look good, if I act fine, I could be in horrid pain. Its not all in my imagination. I’ve heard that one a lot, that’s not it. I have problems, my diseases are slowly making me very ill and unable to do as much as I want, but I enjoy my life.

And if you see me enjoying my life it doesn’t mean I’m better. It doesn’t even mean I’m having a good health day, but I could just be having a good day. I am not healthy at all. But I’m happy.

You can be slowly dying doesn’t mean I have to see things as sad or bad. But instead I see them as good, but sometimes I feel like if I look happy to some they see it as I’m wonderful and healed but I’m not. I’m still ill. I still have a CHRONIC illness.

Even on good days. The Illnesses are still there. They don’t go away.

Chronic means that it’s not going to be cured anytime soon, that you’re going to be in pain. That you are going to be in and out of hospitals sometimes, it means that doctors offices and blood draws are another part of your life. It means that when you wake up you have to take time to get out of bed. It means taking a shower can make you pass out if you aren’t careful. It means food can make you sick or even kill you. It means that I’m chronically sick, I’m ill, on good days I’m still ill.

I feel like people don’t want to accept the fact that being ill is chronic and that I’m never going to get better without a cure and at this moment this cure isn’t real. It isn’t happening. So for the time being I’ll be living with chronic illnesses, so daily, I will be living with chronic illnesses…

This has been my randomness on Sunday…

Shayweaseling it…!!

The Trail Less Traveled is Full of Spiders

May 6, 2015May 6, 2015 / Shannon DeRose / Leave a comment

I woke up yesterday, and made up my mind that I was going on a walk. A good long one. I was going to do this.

I packed my backpack with my purse a camera and some water. And I left on my walk. I had a rebound headache from the migraine I had the day before, my back hurt from my kyphosis, my allergies started to attack as soon as I step outdoors, but I was going on this walk that was for sure, I walked through the park I had walked to.

There was this trail that lead off the main trail I was on and it made me think about how the trails that are less traveled are normally full of spiders and bugs and sometimes they have animals that will attack you. I took this path because it seemed cool but I soon turned around when I saw the huge spider in the middle of the trail. But in life I don’t get to turn around, I either have to walk through the spider web or I just have to stand there in front of it, because turning around in life is something you can’t do, you can’t retrace your steps, you can’t go back to how yesterday was.

But you can stand in front of the spider or you can figure out a way to go around it, or you can walk through the spider web even through its gonna be hard to get that web off you and you might even get a spider on you. Or you can do what I normally do, grab something and pull the spider web down. And then walk through it.

You know when you have any problem in life, if it be sickness, a death, a choice you have to make whatever when these things show up its almost like you can stand and stare at the spider or the problem or you can walk through it, you know its going to be bad but you can go through it.

Sometimes in life I feel like we go through almost blindly we don’t know we are walking on a path we sometimes get lost in the woods, but somehow we get back on the path after a while and sometimes its a different path then we were on before.

When I first became ill, I was lost in the woods for a year, I was sick and I was horrified, but I found this path about a year ago, and it was one I had never been on, So I took this path and I followed it mindlessly as the doctors and nurses told me they didn’t have all the answers, I then found some people along the way on the same path different parts, I found people like Aileen and Macy who had illnesses too, they let me rant about stuff and they had me laughing.

This path that us spoonies take is one thats very strange to most people in the world mainly because they’ve never seen it. But through all the trees and all the daisies and through all the spider webs we handle this trail is amazing.

The sun shines so bright when it hits that one spot, and you start to like all the trees and you start to find things that make you happy, When you’re sick you find happiness in simple things, you don’t need everything you just want little things. Like those five dollar cookies or that lipstick or makeup or that one mask you wanted that was five dollars more than you wanted to spend.

I have walked through black widow spider webs that then sent me into anaphylaxis I have walked in the rain but the trees they made the rain less… This trail or road less traveled is full of spiders and ants and bees but its full of really rare beautiful things that on the road that is more so traveled they have beat to the ground because so many people have walked on them. I’m not saying its better I’m saying its different.

I know life is hard for everyone in different ways, everyone struggles with different things but every once in a while when a spider is in my way and I fall to the ground horrified of the spider, thats when I miss out but when I grab a stick and tear down that spider web, I know I did something.

Its not easy but it never will be and I think part of me is becoming okay with that. I’m partly happy to be on this road thats been so hard to live…

Well… This has been Wesday the day where I rant about whatever it is that I please!!

Come back on Friday for Shay-De foodie Friday where I give you recipes for food and on Sunday which is total randomness…

Shayweaseling it!

Why weekends are hard…

April 12, 2015 / Shannon DeRose / 2 Comments

I hate ~~mondays~~ Fridays, I know what? Shay? How can you hate the weekend they are fantastic. One let me say I haven’t always hated them. And I still hate Thursdays more than I hate Fridays but for me I hate the idea of the weekend, that you have to go out and hang out with friends or if you don’t have plans then you are just going to die alone or become a cat lady.

I mean its not a big deal. I have been a nanny and my idea of a friday night was the parets going out and me making like 100 dollars thats my idea of Friday for a long time and when I wasn’t working I would sit in my living room watching TV shows or movies or I would be on tumblr for like nine hours.

So I don’t get where this you have to be busy on the weekend sleep in and go out and party or go to church on sunday. I don’t get it. I want to do what I do on a normal day. To me the weekend ends up normally being really boring and I don’t enjoy it because everyone is saying “Oh my I’m doing blah blah..” I mean even if I had a lot of friends who wanted to do stuff the weekend wouldn’t be when I wanted to hang out it would most likely be a random day.

But I want to say since my chronic illness kicked in over drive, the weekends end up being really hard on me. I feel like I am missing out on a part of live that I never knew I needed but I don’t need it. You might be someone in school or work the weekdays and when you get a free day its like fantasticness but to me it sometimes end up making me sad because I’m like I don’t have energy to do anything and its not going to change just because its the weekend sometimes I have good days but they are normally on a weird day like Tuesday and I get to make breakfast and go to the store, but my body doesn’t know that its the weekend. It does what it wants to.

So why am I telling you all this? Because I know that people with chronic illnesses might feel the same way, so if you know someone who has a chronic illness go over and watch a movie with them and don’t try and make them talk to much or anything just let them be but be there with them. It means a lot when you get a friend who can sit in the same room on their laptop as you and not talk but will say something like did you see this?

Or when we need to rant about shit you listen. Its hard because we might seem whiny but it really is that some of us aren’t around people. Don’t talk to people, and a lot of us don’t get to see very many people at all or only talk to people online.

The weekends are hard because its not just we can’t get out its that no one wants to stay in and no one wants to hang out with you.

When you are diagnosed with a chronic illness you normally lose half your friends right off the bat and it kills small parts of you. So yes, if you want to help make weekends better then just be there and say what’s on your mind.

My name is ShayWeasel and this has been a weirdish public blog post…

#spooniestrong #weekendssuck #fuckit