corn allergy

It’s been Confusingly Complicated

/ 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!

Nala is adorably wonderful!
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It gets worse but you handle it better.

/ 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 papa and myself at the beach

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.

My adorable dog Nala

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.

Me with My beautiful sister Vana!

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.

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Glasses on

/ 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

/ 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

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

/ 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..

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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…
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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.

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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…

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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…

Eggless Sugar Cookie Dough (Believe me its fantastically!!)

/ Shannon DeRose / Leave a comment

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So… Its Shay-De foodie Friday!! And its the start of food allergy awareness month. Which means that I will be posting about it. Food allergies have been in my life since I found out I was allergic to cherries when I was a young child. But it didn’t change my life fully till I was 17 years old and my body was reacting to so much food.

I found out nine food allergies then. I now have gained more and I have over all about 22 food allergies, but thats putting some of them together. But yes I have food allergies, my body doesn’t like so many foods.

I don’t mind having food allergies, its hard to live with but its not horrible. Food allergies change your eating and it changes parts of your life but its just made me more fantastic then ever, and I love it. I don’t know why but they can for sure be highly annoying.

But since its Shay-De Foodie Friday lets get to the recipe part of this blog..

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So here is the Recipe for eggless sugar cookie dough.. (This is just to eat not cook. I do not believe cooking it wouldn’t work, but I ate mine raw and it was fantastically wonderful)

1 ⅓ cup of flour (I used oatmeal flour, as we all know oatmeal flour is my go to flour.)

½ cup butter or butter

¼ cup raw sugar

¼ cup brown sugar

1 ½ teaspoon of vanilla (extract or from bean)

 

Instructions

  1. Beat together the sugars and the butter till adorably fluffy or just fluffy if it doesn’t look adorable, do not be worried. I beat my together for sevens minutes.
  2. Add the vanilla and beat for another minute
  3. Add the flour slowly till all the flour is mixed in fully. It took me about five minutes to add it all and beat it.
  4. Put in bowl, eat enjoy!!!!

I hope your week has been amazing and if you ar staying in this weekend then I hope its amazingly fantastic!!! Make this cookie dough and eat it and then feel fantastic unless your a spoonie with stomach problems then you might feel like horridness afterwards if this is the fact then.. Well I understand.

 

Thanks for reading this has been Shay-De Foodie Fridays if you would like me to make something center let me know in the comments below!!

  Shayweaseling it!

I Won’t Fail My Failing Body

/ 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.

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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)

Best Chocolate Chip Cookies (Gluten-Free, Corn-Free, Nut-Free)

/ Shannon DeRose / 2 Comments

 

Now if I’m being honest, I’d tell you that I love eating cookies, and I do it so much that I’m pretty sure I’ve found ways to make my oatmeal taste like cookies.

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And if you give me a cake I’d be like I’m good, because its not cookies, so since I love cookies so much. When I was told that I was allergic to a lot foods, I had to go out and find ways to make different things.

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Cookies being one of them. Enjoy Life chocolate chip cookies have been a lifesaver because everyone knows I want chocolate chip cookies. So I use those a lot and oatmeal. I mean man am I blessed to not be allergic to oatmeal, I do love me some oatmeal

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But back to cookies so a few days ago I was wanting some chocolate chip cookies and I wanted them bad, so I pulled together everything I had to make them, and I, being me, was trying to find a recipe to work with and I couldn’t find a good one till, well, today. I found this recipe and I had to change it a tad, but it works and the cookies I made are so amazing.

So here is how you start off

Ingredients

eggs – 1 full egg and 1 egg yolk.

2 ½  cups flour (I used one and ¼  cup oatmeal flour and one and ¼  cup tapioca flour)

½ teaspoon baking soda

1 cup Brown Sugar packed

½ teaspoon salt

1 teaspoon vanilla extract

½ cup raw sugar (you can use white sugar I used raw)

¾ cup butter (I used dairy butter but any butter works.)

2 cups chocolate chips (I use enjoy life chocolate chips)

 

  1. I preheat the oven to 325 degrees F (165 degrees C) line cookie sheet with butter or cooking spray or parchment paper, I only had butter so I used butter and they worked good. (I basically just put butter all over the cookie sheet)
  2. Sift together flours, baking soda, and salt, set to the side.
  3. In a bigish bowl I used my kitchen aid that makes everything easier. Butter that has been at room temperature for a while (mine was about two hours) and sugars together, I let it blend together for about 5 minutes to get that creaminess I feel it works better.
  4. Add vanilla, egg and egg yolk and beat until well blended, (I let my eggs sit at room temperature for a little while you don’t have to do this step but I think it helps.)
  5. After the eggs and vanilla are really well mixed together add the flour, baking soda and salt, Now be careful not to add it to fast. I add it slowly and then just till its blended then add the chocolate chips and let sit at room temperature for about ten minutes if its still kind of not right looking let it sit longer.
  6. Put on pan anyway you please and then bake for 10-16 minutes my cookies happen to be big so they cooked for 16 minutes.
  7. Let cool and enjoy!

So that my best chocolate chip cookie recipe!! I hope you all have a good Shay-De foodie Friday!

Come back next Friday for more food recipes and come back Sunday for randomness and come back Wednesdays for Wesday the day where I rant about whatever I please!!

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Why weekends are hard…

/ 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

The Medical World Has failed

/ Shannon DeRose / Leave a comment

This post should really bother you, if it doesn’t….

 

The medical world has failed horridly for people with chronic illnesses, they have failed us. I as someone who has multiple chronic illnesses I know. Because as the doctors talk to you like you are either stupid or like you are suppose to understand everything. I have health issues and the doctors they act like I’m suppose to put up with being in pain and being sick because they have no fucking clue how to live with chronic illness, when I go to the doctor and I say well I had one good day last week and then I say “I only threw up twice all day.” Yea thats a good day, I’m fed up with doctors treating people with chronic illnesses like its our fault, and oh they do.

in the medical world you sometimes have to wait nine weeks to nine months to a few years to get to see the only doctor who has any clue what they are doing, people are either misdiagnosed or they are called insane and sent home, or better yet put somewhere like an mental hospital when they have a physical illness that needs to be treated by a doctor who will listen.

Living with an illness is hard but personally what’s harder is hearing the words “It is all in your head” “You are already on the treatment” “the medicine I put you on is suppose to help”

My sarcastic answers to these questions are much easier for me to say then really dealing with another doctor and another treatment that didn’t work. The medical world is not helping because out of the 7000 rare diseases there are only 200 that have cures and most of the rare diseases don’t have treatments, theses diseases are unknown and so most of them are undiagnosed so you have a ten year old child whose body parts body out of place and everyone just says she is loose jointed and then they go on and act like this is fine and then when she is 15 her body hurts and other weird things keep happening but what happens when that same girl gets in a car crash and she is rushed to the ER and she is talking and all is fine but then she dies her heart burst because she has EDS and it wasn’t on any of her paperwork and she didn’t even know, because no doctor put all the pieces together, what happens then?

They die, okay lets go back a little, sometimes doctors want to put us into small little boxes when in reality some of us have multiple rare diseases, and we don’t fit into the boxes of us, well the people with EDS might be able to fit into small boxes but not health wise. The medical world needs to admit they failed the people with chronic and rare disease.

It needs to change, we don’t need to be treated like we are insane every time we walk through the door, my stomach when I throw, I just throw up like a gush of water, if you didn’t want to know that then I’m sorry, but it seems the doctors they don’t want to know either, because as soon as they come into the room, they have made up their minds, when are blood test show we are normal, maybe you aren’t doing the right blood test, maybe its you doctors, because every chronic illness person thinks its there fault, and I don’t know where doctors got this idea that everyone is making up their illnesses, but they aren’t. Maybe five people are but most of them aren’t and you need to deal with the fact that maybe you doctor have no clue what is wrong but do tell me that you know something is wrong, tell me you believe me, even if you can’t help me, just be honest with me and say you can’t because as the person with the illness, I’m not just trusting you with my illness, I’m trusting you with my life.

We have illnesses, we aren’t fakers, we are sick, so dear medical world right now you are failing the people with chronic and rare illness/diseases, and we know that we may never get better but we want some help. So please help us.

  As always I might be a spoonie for life but I just hope I’m not always in pain.