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

friendversary to Macy!

January 25, 2016 / Shannon DeRose / Leave a comment

I didn’t get to post about this on Janury 3rd so I’m posting today!! A year ago I found a photo of some of my favorite baby food at the time pumpkin and apple baby food because what else would it be?! 💁🏼 one comment on a photo and a DM on Instagram lead me to the giggly and randomness that is one of my weird soul mates Macy!! And Addie!! My friendship with Macy is deep and the bond we carry is strong! Two am FaceTime, Skype calls, tears over everything from the lost to a treatment not working, to Drs treating you horridly to the joy of a diagnoses. To the sadness of more disappointed and more diagnoses and more we don’t knows and more we don’t have treatment to we don’t know what’s wrong. But to finding postivity in the darkness and being grateful for the little things. Macy hasn’t just been one of the most Amazing people I’ve ever known but she has become one of my best friend and strongest people I know. We are fighting illnesses not seen by the naked eye we are fighting diseases, we are fighting our bodies. We don’t get days off we don’t get days to relax. But we fight through we never give up and we never let an illness win. Macy you are stronger then you Even could understand. You have a beautifully fantastic soul and I can’t wait to see were this friendship takes us!! (Also Kyle is pretty fantastic for always being. There and for fighting for Macy! Addie you rule!! And we all know that Rory and Addie FaceTime more then you and me.. 😍😂💁🏼💁🏼🙈 )
Macy you and me got this!!! Let us fight! 💪🏽💪🏽💪🏽😘 love you!! Happy one year friendversary and happy one year anniversary to being married to your wonderful husband!! 🌻🌻🌾

This is friendship when you are chronically ill. Online, through our cell phones, laptops, iPads, kindle fires, we are strong yet our bodies our week.

She was the first person I texted when I woke up from my stuff back in may I texted her photos of epipens and of my underwear.. Best friends doesn’t even cut it in my mind. Macy you rule we got this fight together we are stronger!! I love you!!

Shannon DeRose.

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…

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…!!

Write Your Story

May 19, 2015May 20, 2015 / Shannon DeRose / Leave a comment

I have this notebook my sister Stephie gave me, on it it reads “Write Your Story” my whole life I’ve heard this saying write your story, make your own life, live your own life, but I have noticed lately.. People they don’t live there life’s, they just live… They just go doing nothing, but they aren’t taking breaths with purpose and they aren’t writing their own stories they are letting their stories be written for them.

Its as if we live in a world where you can live with the way things are or we can change them or we can try to change them, we might take a long time we change them. But we are working throws it.

Its hard to write your own story, because that means you have to live with purpose and with love and you have to try so much harder than ever just to live, you have to be able to try you have to let yourself try and write it. It doesn’t mean you plan out every part of your life it means you live your life as it happens.

When you fall, you get up, you go on. You keep living you keep going on with your life. You don’t give up. You will get shot down on a weekly basis but you have to remember that you are amazing.

People will hate you but truly as long as you don’t hate you, you’ll be okay.. Life is amazing it demands to be lived. Life doesn’t happen when you sit on the side lines if you’re like me you don’t do well playing the field but you’ve found a way to be in the action without ever stepping a foot on the field. I don’t play the same games as the ones on the field but it doesn’t mean I’m not living.

I will be the author of my own story, I will live my life. I can’t live anyone else’s because my life is my own. I take breaths and I walk and I believe in tomorrow. I also believe in today.

Because tomorrow could always be worse than today, so believe in today.

I leave you with this.. When you live life as just with going through and not really trying are you then one writing your story? Or is someone else in control? Or are you letting the way other people feel about you… Have an impact on your writing of your story?

Write your story, no one could write it better then you…

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!