This past year has had a lot of wonderfully fabulous moments happen but also a lot of heartbreaking moments. I wish I could say it’s gotten easier but we’ll it hasn’t. and as always it’s just getting easier to handle.
My health has been all over the place this past year I had 3 surgeries and had to try a few new medications I didn’t do well on any of them.
I had a new feed i had to try because the company changed the ingredients of my same feed I’ve used for 8 years now. That hasn’t gone well yet. But I’m thankful for food that keeps me alive at least…
My cousin Jeff and my mom
But I have had some fantastic experiences we got to take Rory go to Texas for the first time!! Which was wonderful and hilarious! Rory to meet her great grandma! Our family friends the Dye’s (that’s their last name) and so many other people there
We got to take her to eat at some of the best Texas foods! Even though she thought it was hilarious that all of the days we were there was us going to meet some people for lunch and then talk for hours and then go straight from there to meet someone else for dinner.
Rory, my papa and grandma De
Random fact: Every time Rory we get to see Rory me and her go and take a bunch of random photos together. We’ve done it since she was little!
Now some hard things also happen in 2025….
Sadly my uncle Jack past away at the very end of December 2024 and we got to see family in Gregoria but that wasn’t the reason I would have wanted to see them to see them!
At the very end of 2024 We had me and all my siblings and. My parents all together for the first time since 2014!!
My family funny photo
And then again in April we got to go be all together!! It was amazing!
My uncle John-Dale horridly died while at a stop light he was shot and killed by someone he didn’t really know. It was a shock to us all.
Me, my grandpa (passed away in 2022) my Grandma De (December 2025)
Horribly I lost my grandma at the very end of December 2025. A few months ago we got to go to Texas for her funeral. Again seeing family was great but I don’t like the reason I’m having to be there.
I lost my baby Nala who was the sweetest most kind dogs I’ve ever seen she’s up there with Noodles (poodle we had from 2017-2020) Dodie who is a sweetheart dog that we had growing up. And Beng my baby Pekingese who I had from (2005-2014)
The loss of Nala was unexpected for sure. It broke our hearts.
My best friend Jazzy passed away. Having gotten to meet her in person twice! has been such a blessing I haven’t gotten that opportunity with some of my friends who have passed away before I got to meet them in person.
Jazzy was an amazingly beautiful human!! I miss her everyday. I miss our long random talks and text conversations about TWD (the walking dead) music tv Shows and YouTube. celebrities whatever it was we talked about we talked about everything!
Normal family photo (as normal as we get)
But God has a plan. And as His child I realize that I don’t know what He is doing but I know He has never let me down so I trust Him.
This has been wonderful year but a hard year with lots of sadness and love. I am blessed to be able to live my life with God holding me!
I’m amazed day by day that God works in amazingly random ways!
My sister Vana and me at Christmas 2025
But I’m blessed to be here to be alive. I’m blessed that I have the opportunity to actually grieve the people I have lost. I’m blessed to be a part of His family!
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
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.
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.
This is pigacorn.. my papa enjoys setting her up around the house in places like this….
I obviously live with my parents! In 2016 my parents and myself decided to move in to a small townhouse in Beaufort. We moved together. I had been living in va beach and they had been living in Raleigh area.
I have to say the first year was hard. Understanding what each of us wanted and needed for and from each other. And how we worked and figuring it all out.
I was not doing anywhere near good health wise and neither where they and we didn’t have much money. And didn’t know what was happening or going to happen.
But we finally figure each other out mostly. And since then it’s gotten easy we figure how what to do what to say and what not to and it’s funnier then ever and we still have days where it’s hard. But mostly it’s good! Funny silly sweet and over all very very random!!
but here are 13 weird things about living with your parents…. As an adult!
13.
You start to truly notice the what your parents react to your other family members by friends by anyone. You see when they get hurt by others especially other family. And learn how to make them feel better!
12.
You know weirdly personal things about each other.…
11.
You start to know all of the times they take their meds and knowing every med they take. and knowing the way they act when they don’t take their meds and the way they act when they are taking them.
10.
You start to figure out if they are in pain without them every saying they are.
You also know how to relieve some pain from them if it’s just rubbing their back, watching something funny. Or just Not talking to them or just giving them a cookie whatever it is you know what you need or don’t need to do.
But you don’t always know…
9.
You know what they need help with and what they don’t want help with. And what they need help with but don’t want help with…
8.
I have some of the most random conversations with my parents. The other day me my mom and my papa had a long conversation about what the difference is in horror movies and scary movies or my mom and I having a long conversation about walkers in the walking dead changing over the course of the show.
7.
You know every tv show, movies, downton abbey, series they like and don’t like. And you know shows we watch together and shows we watch apart. And shows we watch when there is only two of us and on so.
And what things you like to do. Like for my papa studying the Bible and studying to teach different classes he teaches. going to talk to people. Watching tv being funny playing with the dogs!
For my mom it’s things like playing the piano. Singing, Cleaning and pricing the jewelry for the thrift store. Watching tv listening to music. Studying the Bible And talking to people watching the adorable tiny humans!
6.
You learn to look at all the scars of all the things they’ve gone through over the years. All the times you’ve hurt and they’ve hurt and come to realize how and why they do things. And how strong they are to be able to handle it all with such grace!
5.
You know when they are upset sad angry but not always sure what who or why they are upset or angry.
But you know ways to make it better. You learn ways to know how to see them listen to them. Or leave them alone. You still get it wrong sometimes but you try.
4.
Y’all can talk without saying anything… you just know… by looking at each other.
The other day while my mom was talking to someone. My papa and I without saying anything figured out if my mom took her meds and which one she forgot… we are weird sometimes.
You know them because you love them
3.
You know they are your parents but they slowly become like your friends in the weirdest way. You know how to talk to each other.
We have jokes and random things we say to each other. We laugh we cry we enjoy our random things..
If someone drops or makes a random loud noise or whatever we asks each other “are you ok?” Because when all three of us could fall and have fallen and got hurt. You wanna make sure.
My papa’s way of not way of doing the dishes if you can’t get into the dish then there are no dishes to be washed…
2.
You become comfortable with each other! You don’t feel weird or awkward at all around each other. You know how to make each other laugh. You have inside Jokes.
And do random things to make each other laugh or tease each other. Like my papa and my self like to take random little figurines or toys type things and put them in weird places all over the house! Rory loved this and always laughs and has fun when she comes!
We have quotes from movies, tv shows, random things we’ve said. Random things children around us have said! Like
Us to Eden a one year old we watch
“What’s the magic word?” – Meme
“Mine!” – Eden……
1.
You truly see them at their best. Their worse. You truly see how strong they are mentally, physically, emotionally, and more then any of them how strong they are spiritually!
I have more respect, love and amazement for my parents then i ever have! Daily I see them overcome things. See them be a shining light in so many peoples life. I see how much their simple things they don’t think are a big. How much of a big deal it is to so many.
I see the hours they put in to do all they. I see their struggles in ways I never have. I see them be brave. I see them be silly! I see them enjoy the simple things.
If it’s just sitting on the sofa and watching the nanny or the walking dead or random other shows! They have joy and find joy in so many things. So many different things. They are amazingly fabulous! But they find the biggest joy they find in the Lord.
Now it’s not always easy but it’s not always hard. It’s not always funny (but honestly most of the time it is!) but above all that it’s always full of love!
Shayweasel 