It’s been Confusingly Complicated

November 17, 2024November 18, 2024 / Shannon DeRose / Leave a comment

It’s been a long time since I wrote. I find it hard to explain what’s been going on. It’s confusing weird and totally unnecessarily complicated. So since I don’t know how to explain things I just don’t say anything. I don’t write as much I don’t text as much or post as much.

Sooo here I am trying my best to explain things.

Last year my main doctor over my care was unexpectedly moved.

Since then I have not really found a doctor to take over. So it’s been hard. That doctor advocated for me. Explain things stood up and got the things I needed done.

Now he did above and beyond what he was supposed to do. And I do not expect in the slightest for another doctor to do that.

In January my psoriasis started getting worse and ended up caausing some issues around my Hickman central line (basically long term iv) and getting it replaced was what we knew I’d need in the long run but the doctors didn’t want to mess with me. Not having the doctor to tell the other doctors how important this was. Made it hard.

And as the line got worse and worse. The Place I had gone it get my care for my line for years got overwhelmed and confused by all that was happening because I hadn’t found someone to be able to make the doctors talk to each other on what to do! Which isn’t truly the fault of anyone there just how the medical community works sadly.

In April after waiting months I had surgery to replace my Hickman during surgery they couldn’t seem to be able to put the line in easily at all. Due to having vascular EDS my veins are slow collapsing into them self and/or splitting into smaller veins that basically lead no where. And because of this things like central lines have issues getting through.

The surgery put a Hickman( the longer team iv thing) in but couldn’t get it where t was suppose to be not deep enough in the vein. And it was extremely painful.

After a few months till they could get me into a different surgeon once I got in they decided to do another surgery and remove the old line and place another.

Well that surgery was suppose to be 30-45 minutes and it ended up taking over 2 hours. I was able to go home after what seemed like a short time in post op recovery.

The Hickman hurt weirdly so when I got out of surgery. But after using it at home it hurt. Badly. My breathing then started feeling like I couldn’t catch my breath. It was then my papa was like we got to go to the hospital. And when I agreed my parents knew something was wrong! Hahah

So at the er they were busy the doctor ordered an X-ray. And the X-ray tech using the portable X-ray took a few X-rays of my chest side and back. She seemed worried and that was worrisome.

But when a man comes in and says the dr ordered a ct made both of us kinda worried. After the CT scan within five minutes of being back in the waiting room someone came to get me.

The doctor would then come in and tell us that my Hickman wasn’t in a vein. It had somehow wasn’t where it was supposed to be. I was admitted.

We all decided to try and put a picc line for the time being. They had a hard time putting it in my veins are very thin and they move around a lot. There isn’t much or any connective tissue holding them in place.

After they put the picc line I went back upstairs at the hospital my picc line stopped working. It turned back in on its self.

I had to get it replaced the next day. And was able to be discharged which was a blessing!

But less then two weeks later my picc line stopped working. My doctor told me to go to the duke ER and so we drove the 3 hours there and then we got to the er at 2ish on a Monday and we left the ER at like noon on Thursday. I was in the ER the whole time. In a room with a curtain and in a busy area…

Horrifyingly this wasn’t my worst time in the ER

But during those 4ish days I had 3 picc line fails two tries in one arm and one in the other meaning they couldn’t get them in. Two Hickman line in my chest that they couldn’t get in. And then the last ditch effort came in…

A Hickman placed in the very top of my leg. It’s a very interesting place to have one. It is weirdly in the way more than I would have thought.

Like simple things.. dogs or children sitting in your lap making sure they don’t pull or mess with the central line on my leg.

Leaning against the counter to get something or to rest and your line is right at that level. Wearing shorts tbhe line with dangle and that makes it hard not get it caught on something.

When I need to give myself medication in to my line I’ll either have to pull my pants up if I’m wearing shorts or lose clothing or down. Unhelpful and weird in some situations.

But it works. It’s what I need to survive. We don’t know what’s gonna happen just yet but we do know that my body won’t stop getting worse but we will become better at handle it.

The psoriasis is dangerous and confusing. And the eczema is itchy and painful. so what’s the plan from here on out?! Confusingly it’s trying a different medication to see how that works.

It’s confusing because they still don’t know what cause it to get so bad. And we don’t know either but I started a new medication which is an injection every other week. We will see how this goes!!.

Having a chronic disease makes you have to learn to accept the reality of the disease. I know my body will get worse as my disease progresses and it’s up to me to handle this with joyfulness and kindness.

I don’t know what’s gonna happen and I feel like this is confusingly complicated and have no clue what we will do next or what is gonna work. But I leave it in the Lords hands

Sooo here we go…

Shayweasel is confusingly complicated

But thankful!

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It gets worse but you handle it better.

November 27, 2023November 28, 2023 / Shannon DeRose / Leave a comment

Life is weird and I’m ok with that. I think so anyway….

I have a habit of not wanting to say things are bad. It’s a good habit to have but not always a helpful one.

It’s not like I deny that things are happening it’s that I don’t want to bother people with things.

I think sometimes I’m doing great! I’m stable and then my body decides that it doesn’t like that and I trip and fall and leave a bruise for two weeks that’s concerning and then I remember that my body is getting worse.

My disease is progressive and it will always be getting worse one way or another I will become worse.

and that this is hard to handle. I think back to almost ten years ago right before my nose surgery to clean my Sinus and remove a bone that wasn’t suppose to be there. I think about how confused and unsure of how or why my body was so weird.

But how after the surgery I knew things were never gonna get better. I know my body was gonna kill me.

As the years have gone on I’ve slowly seen the progression of my diseases become worse. Small things like eye sight getting worse or Small things like not being able to orally eat much. It seems to lose at least one or two foods every now and then to come down to only really being able to eat bites.

Somethings have gotten easy but also harder. I use to need my wheelchair every time we went out. For a few reasons ones mainly because I use the wheelchair for one of the big reasons because I had so many seizures that I was falling every time I had one causing more problems than ever like once being on the pavement in a Target parking lot and your parents not being able to get you up and into the car and having to have a stranger who just asked if we needed help! help your dad get you in the car.

The seizures have lessened because of my VNS which is my Vagus nerve stimulator. Which is a small device that is wrapped around my vagus nerve in my neck/chest on goes to my heart then other goes to my brain.

The device is like a pace marker for your brain. It goes off on this small pulse every 90 seconds. It has a pulse that goes off that’s higher whenever I put my magnet on my VNS.

Now the highest plus goes off whenever it feels a seizure of some kind happen inside my brain/heart and that one goes off for a normal person (well normal person who has seizures and happens to have a VNS) is around 20 to 40 times and that’s a bad number to them.

Mine goes off over 200 times every day. So without the VNS I’d most likely be having over 200 seizures a day. So yes my VNS is something I love and am beyond grateful for!

I know that the seizures, the diseases that have been slowly killing me. will never go away. And that they will get worse.

But I don’t have to use the wheelchair as much now. I can walk more. But I don’t go out as often. Partly because when I do it’s an event and I can’t do much the next few days…

I don’t have to use my epipen as much as I use to but I don’t do as much as I use to. And I’m able to get my IV Benadryl like I should be there are times when we have trouble getting it but it happens less often then if use to. But I don’t eat as many foods or eat food orally as much. At All.

All my nutrients come from my feeding tube.

My body has issues with getting sugar from my feeding tube. I got to hear the best thing I’ve ever heard a doctor say “your gonna need to try and eat more sugar and salt orally as much as you can!”

I was like I will make that sacrifice! So hard to do. But ok doctor I will eat ice cream every day!

Do I miss eating normal foods orally? Yes. Of course I do. But now it doesn’t seem like a big deal to not eat them.

It has just became something normal. I can go to a restaurant sit and not eat and I don’t even give a second thought about it!

I don’t think I’m better then I was. I’m just learned to be better at handling it.

I get hurt more often then I use to. By that I mean I fall more my hands do this thing which is considered a seizure which I didn’t know for a good while but my hands do this thing of dropping something my hand will just stay in the same position a few seconds afterwards. Now the most annoying thing my hands do is randomly throwing something. That one gets my last nerve like hand what are you doing?!!???

My joints go out of place a lot making me randomly fall. This past summer I got burned by an iron twice while doing crafts. The first one was a first degree burn the second was a second degree burn funnily enough.

I am constantly covered in bruises and things. I had to have two teeth surgically removed in September. because of how deeply my tooth was in the jaw bone

The top tooth on the opposite side of my mouth was a wisdom tooth and I broke it during a seizure an over a year ago. They had to cut into mg sinus cavity to get it out of my cheek bone I don’t understand how mh body even works

I’m saying all this to say it’s the weird things that happen randomly that’s what makes it hard.

It has gotten easier to remember to take my meds, to carry my backpack doesn’t seem hard now. It’s been basically a part of me

Don’t mind being home watching tv, baking, doing crafts, like making bows or crocheting.

I can do everything I’m supposed to. Everything the doctors tell me to do. And I know that I will get worse. My diseases will progress no matter what I do.

I will lose friends to diseases. Having friends who understand your health is always helpful but turns hurtful because you know they have the same or similar outcome as you do.

But as the years go on that progression doesn’t seem as scary. Doesn’t feel as hard to handle. The thing you learn is it’s ok to be ok with getting worse. It’s a good thing to learn your limits. Your life is hard but you don’t have to be fearful.

Getting my feeding tube changed out which happens every 6-10 months doesn’t seem scary anymore it’s more like just going to have a conversation with the people in radiology.

Getting Hickman drsssing changed every Friday at the Rabb clinic (infusion center here where I live) doesn’t seem like a big deal it’s basically me going to visit the nurses and front desk people. The guy who drives the little trolley type thing that picks people up in the parking lot to take them to the front of the hospital. I see and talk to them all.

It becomes less of a problem to be able to do these things. It becomes scarier but that fear you now know how to handle. You learn to be ok to calm yourself when everything is going wrong.

You learn to be ok.

***On the beach with my fabulous sister Stephanie!***

It gets worse but you handle it better.

Because believe it or not everything can be worse and you can still find a way to be like Pollyanna finding the fabulous in the worse is the best thing to do.

I trust God. I can handle this because I have the Lord and He makes me stronger.

Shayweasel is worse but handling it better

And that worse is some of the most amazing things have happened out of it. It’s the best kind of worse I could ever ask for and I’m blessed to have it.

I hope your not the first in line

February 24, 2023February 24, 2023 / Shannon DeRose / Leave a comment

You don’t want to go to the ER in general. You don’t want to be here. But somehow you ended up here.

There are a bunch of people in the waiting room. All waiting for help. I’m just the one sitting off to the side.

An elderly lady checks in and sits in the waiting room chair. And within five minutes she’s taken back. And sadly I know a lot abii ok it that.

I almost feel guilty that I’m so glad I’m not the first in line. I’m glad I’m just here for something simple. Here for something fast. I’m so glad they know how to act so fast.

When your the first in line. In the er it doesn’t mean they like you more. It’s not a privilege to go that fast. It’s a burden and a scary act.

It means your not doing good. That somethings really wrong it means that you need help bad. Right now. I’m not the first in line because I’m not doing bad.

I’ve been brought into the ER like that. I’ve seen them work real fast. I’ve been scared and quiet. Praying for this to be all right.

So go that little old lady I pray whoever brought you is fixed or at least they help you some how.

You might never get better or maybe it’s not like that. I just hope you don’t feel bad. That you went back before everyone else has.

And to the other people the one who has been mean. The ones who see this and almost show jealous I hope they find out why they should be glad. That they aren’t the first in line.

Shayweasel is glad to not be first

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Glasses on

January 15, 2022January 15, 2022 / Shannon DeRose / Leave a comment

I don’t have a lot of photos of myself so here is one with me and Rory

In movies and In books and Even in life I have seen countless times where the main dorky or weird person gets a makeover and the one thing they seem to do thw most is take off their glasses wearing contacts like somehow that makes them prettier.

And everyone is so amazed by this beautiful person they suddenly see with a new outfit and glasses free and pretty shoes!

They act like this person is so much more pretty then ever before. And then someone says it’s normally the main popular guy or girl or their old friends are like I liked you better before or wow I never knew how pretty you were.

The person then realizes suddenly how beautiful they were all along! They normally don’t go back to their old clothes or put their glasses back on sometimes they do but it’s like they realize suddenly how to be beautiful.

I never understood why you’d want to take your glasss off to look more beautiful. Like I know They might have contacts in or whatever. But why does that make them look prettier.

I think I look less sick with my glasses on then I do with them off. But more importantly the world looks so much more gorgeous to me with them on.

Because when I take my glasses off apparently the world thinks I’m more gorgeous. But the issue is with my glasses off life is a blur I run into things can’t see what’s ahead of me clearly. I have to look closers to see anything.

So while the would sees me more beautifully without them off, I see the world more beautifully with my glasses on.

I think we always do that. I think as humans we see the world is prettier without thinking that the world sees us beautiful or not.

Because when you don’t let what the world wants us to do or be or anything things are easier to see we can see inside ourselves easier when we can see everything outside ourselves clearer.

But when we only care what the world things we can’t see things clearly. We are all blind to the world sometimes when we try to do what everyone wants us to.

So I might not be beautiful in the worlds eyes with my glasses off…

The world is so much more beautiful in my eyes with my glasses on!

Shayweasel is keeping her glasses on…

How To Handle Having A Caregiver

April 26, 2018April 26, 2018 / Shannon DeRose / Leave a comment

Here’s the thing when I typed “how to handle having a caregiver” into google I thought that it was gonna say things like letting someone helping you doesn’t mean your not an adult or they aren’t babysitting you and that this is needed those kinds of things but no this is what I found…

The articles none of them were pointed at the person who was sick, I find it so hard to have a caregiver to let someone help me.

I’m an adult and have to have someone come here and watch me?

As of 2018 I’ve become someone who has a caretaker, and a respite care worker. Two people that watch me most of the time. I don’t always know how to handle being cared for.

From the time your born you learn how to be independent. We learn to make sure to cry when we need something, we learn that being nice and smiling can help. That we learn to crawl to get something our selfs. We learn to walk so we can do things on our own.

We go to school so we can learn we do chores so we can be able to clean our homes when we are adults.

We learn to go use the to shower how to cook how to drive so we can do things all by ourselves.

As I get the blessing of living longer and longer I’ve been needing more and more help.

My respit caregiver is kind, and she helps me by really truly is here by just being here. With the diseases I have, it can change fast. I could hurt myself if I had a seizure if I had a a reaction. And so on so on.

I am learning to find this as a way for me to help someone have a job, to know this is ok

I’m learning to look at independence differently. To know I’m still an adult. I still need help but it doesn’t mean I’m lazy.

So how to have a caregiver- be kind, tell them if you need something even if you could possibly do it yourself but you know you shouldn’t, tell them thank you and be kind to them, if they make you feel uncomfortable say something to either them or the other people in your life. Think about them like the nurse on Monk solving crimes and someone walks around and helps him he’s still an adult. (We all know Natalie on Monk was way better then the first)

It’s not lazy. It’s not crazy.

Be kind be good be love

Shayweasel is sitting down

11 Reasons My Downfalls Are Fantastically…

August 30, 2015September 1, 2015 / Shannon DeRose / 2 Comments

I have downfalls and I personally like some of the things some people call my downfalls I’m learning to love… So here is a list of things I like that you call my downfall..

1. I feel all my emotions so deeply that sometimes it causes me to break down

I feel so much deep that some people say its the worst downfall of having autism but I love this about myself because it makes me have emotions that make some people wish they could feel. I love my emotions even when they are insanely off the chart.

2 . I enjoy being alone

Some people say being alone is a bad thing but I seriously love being alone It’s enjoyable to me, but see when you don’t have friends to talk to and feel alone, I don’t I like myself I like being alone and just being..

I am good at knowing what I want all the time

I’m the easiest person to buy for, when you have to buy me a gift and ask me what I want I know right off the bat what I want and where you can get it. It also goes along with eating and drinking and talking to people if I want it. I do it get it whatever…

I don’t enjoy all people

If I like you, you should take that as a good sign that you’re good because I don’t like everyone sometimes I just don’t like people and if I do like you then I won’t stop liking you.

I’m straightforward and tell people off if they are rude

I have what some call a problem but I personally don’t I’m not scared to be like “Gurl… You are being a rude B… Get over it..” And normally the person looks at you for a good minute and then gets over it.

I stand up for what I believe in because I have passion that runs deep

My passion can get out of control sometimes but most of the time it’s all like such a good thing because I am passionate about what I believe in and I always stand up for it.

I’m not scared of what people think about me

I can wear purple tights with a bright green shirt and a skit that has cats all over it and totally think I look and feel fantastically and while some people put a lot of thought and worry into what they wear I’m not scared of what people think about me sometimes I worry about it but I’m not scared of it.

I care deeply about people I do like

My friends and family the people I love and truly like I care deeply about them, I want to make sure they are okay all the time and I want to know what’s going on in there life’s. I care.

I’m not one to leave you once I love you

When I make friends and when I decided I like someone you’re stuck because unless you do something horrifyingly horrid I’m gonna love you forever and till the end of time. I will care about you and I will want to talk to you.

I will forever be who I want to be

With not being scared of what people say I’m not scared to be fully and totally myself and I love myself.

My chronic incurable rare diseases are a very good thing for me.

I am coming terms with my illnesses and I love my illnesses for what they have done for me… They have given me friends that are fantastically, I have had the chance to do things that I personally didn’t want to do but I’m glad I did them. I’m blessed…

I don’t need to be perfect I just need to be me…

This post was inspired by the song Love Myself By Hailee Steinfeld here is a link to the video https://www.youtube.com/watch?v=bMpFmHSgC4Q

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!

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!

I Won’t Fail My Failing Body

April 29, 2015April 29, 2015 / Shannon DeRose / Leave a comment

Today I ate lunch and then as my disease made up its mind that this food I had taken into my body was not going to stay, I went to the restroom and vomited, a few times. I tried not to make it a big deal or anything.

When I came out of the restroom, a lady stood there just looking at me and she said “Are you bulimic?” there are a few things about this question, one if the answer was yes that is not the way to ask a stranger in the restroom. But I answered “No I have a disease called gastroparesis my stomach is paralyzed and doesn’t work the way it should.” she then went “Oh well why do you have it?” I hadn’t ever had someone ask me this follow up question before. I answered “They don’t know the reason why. It might be genetics.” She followed up with this “Maybe you just haven’t taken care of yourself.” She then left the restroom and I stood there and looked into the mirror.

My collarbones have become so much more visible, its not by choice believe me. My legs are thin, my cute round face is less round theses days, even though I have a little left of my moon face from the meds a few weeks ago. I stood there and thought.

Its not fair to me, because I have a chronic illness that people feel the need to either tell me how to heal myself or tell me that I’m not taking care of myself. If I had cancer I would be brave, and cancer is hard to face, but I don’t understand why the fact that I “just” have a chronic illness that I should just deal with it. It doesn’t seem fair. I was born with illnesses and more illnesses have attacked my strong so strong body. I’ve been through more in my life health wise than most. I’ve had crazy days and I’ve been in a places where I had to make crazy hard choices.

My body is failing me. I didn’t fail it. I didn’t make myself sick. I just am sick. I’m okay with my illnesses hurting me but I’m not okay with people telling me Its my fault. I do not have cancer, no. I have an illness that is incurable. Its lifelong, Its painful. Its horrifying sometimes. I have things that are undiagnosed. I had a doctor straight up tell me that I’ll most likely be in some pain forever, and that he was sorry. I have had surgeries not many just two, I’ve had an air tumor in my nose.. What’s that? My doctors didn’t even know.

So no I didn’t fucking give myself theses illnesses Its not my fault. You can tell me off when I’m vomiting in the restroom, but only if you will hold my hair and then give my toilet paper so I can blow my nose and get all the vomit out it. I didn’t make myself vomit, my body is not working. My stomach has just stopped. My doctors are working to either find a med that works or a feeding tube might come into play or I might have to do some other stuff that I truly just don’t want to do. I want to go and live my life. I really want to go on that long bike ride.

I’m strong. I’m really strong, but you see me as an attention seeker in some weird public restroom, you didn’t ask my name, you didn’t tell me you were sorry this happened to me, no you blamed me. My body is not my fault. My mind is not my fault. The things that happen to me are not my fault. I only get to choose how I react to them. And man I’ve reacted damn well… I’ve done pretty good. I choose to wake up. I choose to keep going because I don’t see the choose to stop.

My body is failing me, but one thing’s for sure, I’m not failing my body.

This has been Wesday the day where I rant about whatever I please. And today I ranted… Don’t blame me for my illness, I will not fail my body.

Thanks for reading~ Shannon DeRose (Shayweasel)