Day in the Life Traveling with a Chronic Illness

Day in the Life Traveling with a Chronic Illness

(Here is the beautiful view from me and Annabelles room in Paris)

First I wake up to my feeding tube machine going off, then I either go back to sleep or get up depending what time it is. After that I do therapy. Me and Annabelle are switching between doing the arubika and the vest in the morning. The arubika is something that does the same job as the vest but you blow in it and you don’t have to plug it in. So we would each do our nebulizers, then I would do the vest while Annabelle does the arubika or the other way around. Then I would go take my meds and get ready for the day.

After that we go and do whatever we have planned for the day. When we get back to the apartment me and Annabelle do therapy again and depending on what time it is I’ll take my night meds. Then I’ll hook up my tube feeds. I had to make a makeshift way to set up my feeding bag and pump.

What I Packed for a Two Week Trip

What I packed for a Two Week Trip

So I’m currently on a plane because yesterday the flight got canceled as some of you may know since i posted a update last night about it but I decided to write some blog posts.

Here is what I packed

• 4 pairs of shorts

• 7 pairs of short sleeve shirts

• Socks

• Pajamas

• Toiletries

• Pillow

• Medical stuff

Carryin

• iPad and phone

• Earbuds

• Chargers

• Passport

• Camera

• Extra pair of clothes

• Candy

• Wet wipes

• Money

• Drawing stuff

• Medical stuff

• Pills

Airport Journal #1

Airport Journey part 1

So I woke up at 5:30 from my gtube machine beeping even though I set my alarm for 6am so I could have around 4 hours before we had to leave for the airport. We had some mix up with the flight information since we were told our flight was delayed til tonight but we got the wrong information. We changed flights and now it’s 6:18pm and my flight to Paris takes off at 10:20, since it’s a international flight we board around a hour, hour and a half early. We were told to get here as soon as possible because the flight time could change earlier.

I’m waiting near my gate typing for my blog, I’m going to draw soon but I’m not sure what yet. Since for now my flights at 10 they won’t be serving dinner on the plane so I’ll probably go get dinner in a little bit. My lungs decided to hate me and I’ve been having a coughing fit since I got to security. Which makes me feel like crap and my lungs feel weird like there’s stuff in there, which there is. Anyways I’m trying to think of more things to write here since there’s not much going on. I guess I’ll talk a little bit of how much a pain it is traveling with a chronic illness.

Between me and my sister we have 3 suitcases just for medical stuff for the two weeks we’re going to be in Paris. It doesn’t even have all of our things. We only packed one nebulizer and one vest. One bag had all my feeding tube formula. Another one had all the miscellaneous things like bags with my inhalers, arubika, and spacer. In another bad I had some enzymes and feeding tube bags. I also have my pill container, two gtube extension tubes and syringes, a extra feeding tube Incase mine comes out, two feeding tube pumps Incase one breaks, and a nebulizer pump. In another suitcase I have a vest and on top of it is a bag with the actual vest and other little things.

When I went through security I had to go through the big spaceship looking thing where you have to stand in it for a second with your hands up. Since I’m only 14 I was surprised but it’s a international flight so I guess it makes since.

7:00pm

(It’s staring into my soul)

Right now my family is sitting in longhorns waiting for our food. Before we moved we always went to longhorns but when we moved there wasn’t one near us. Now when we go on vacation and there’s one near us we go there. After we eat I want to get Starbucks and get a bag of chips and candy for the plane.

7:54

(This is my vein, the big building is a hotel attached to the airport)

I’m currently waiting for my plane to start boarding, which is in about a hour. I just got back from eating and as I said before I got some candy to munch on the plane. We’re at the gate across from our actual gate because the sun is really bright and where we are there’s windows everywhere. This is going to be my last update since I need to upload this tonight. We’re going to get there around 11am but it will be 6:30 in the morning here and I won’t have internet access for a few hours after I land. Anyways that’s all for now, bye!

I’m going to… (Travel Update)

(Picture is from when I went to Florida)

In under around a week I’m going to Paris. I’m going to try to upload every other day when I’m there and probably not any art but instead me talking about things I did that day or other travel stuff. I’m going to try to take pictures on my iPad but I’m going to take most of them with my camera but since I’m not bringing my computer I can’t upload the ones on my camera til after I get back. Anyways I’m really excited and I’ve never been out of the country before let alone Europe. My family’s also going to London for a day since it’s only a two hour train ride and I’m not sure when we’ll have the opportunity to go there next. Anyways this was more of a update I guess although I’ve been mentioning I’m going on a trip I just haven’t said where.

Anyways I’m only packing the things I need like clothes and medical things. We rented a Airbnb and since there’s a washer and dryer I only have to pack once weeks worth of clothing. Since I have a gtube I have to pack a lot of formula, since I use three of the little box like things the formulas in each night and we’re going to be there for two weeks I have to pack a lot. Along with a vest, nebulizer machine and the actual nebulizer, meds, other therapy things and my gtube pump it’s a lot.

Things were going to be doing there are…

Mountain in the Parc des Butte Chaumonts

Rue Cremieus- Bastill

Ballon de Paris- Generali

Notre Dam

Boat ride on the seine

Eiffel Tower

Versailles/Chartes Cathedral

Louvre

Normandy Hotel

Hot Air ballon ride

Go to London

The shard

Trafalgar Square

London Eye

Regents Park

Tower Bridge (Glass Floor)

We’re still looking into all the other stuff to do in Paris but these are the main things we have so far. My dad had the idea of making a itinerary so we’re not walking all over the place. We would be taking subways too, and doing a lot of walking of course. I’ve never been on the subway so there will be lots of new experiences. I also can’t wait to eat there croissants me and my sister love croissants and we use them for sandwiches all the time.

Anyways I’ll probably start uploading about my trip the day we leave with a good old airport journal.

Sleep Study

So tonight I have a sleep study. If you don’t know what a sleep study is it’s where you go to a certain part of the hospital (way fancier, more like a hotel) and get a room and get hooked up to all these wires and things and it basically studies your sleep. I’m having this done, as well as my sister, because I’ve been having problems sleeping for a while now. So hopefully we find out what’s causing this or at least cross stuff out if nothing shows up.

It’s a pain in the butt though because yesterday we just got discharged and today we had to come back to get this done. The reason we didn’t reschedule is because we had to schedule it out since it was so booked. But we’re leaving for a trip in around two weeks so at least we’ll get it over with. Anyways that’s all for now, I’ll put in some pictures of what it looks like (from google)

Here’s what the wires and things look like (again I got these pictures from google)

And this is around what the room looks like.

Ya so fun! It’s not until tonight though so when this is published I haven’t got it done yet. Since I need to you know… sleep, that’s why it’s at night. That’s all for now, bye!

My First Time at a Cat Cafe

Cat Cafe

Today I went on a pass and went to a cat cafe, also known as a catfe. So I’m going to show you all the cats I took pictures of and tell you their names if I remember.

Meet Lepear, he is 7. He was so cute and friendly. He was purring really loud and kept rubbing his face on my hand.

This is Little B (yes that is his actual name) and he is 6 years old.

Sadly I can’t remember this ones name but they were so cute.

This is sandy, she was really shy.

Sadly I don’t remember these guys name either but they were all so cute.

In all I really enjoyed this and it costed $4 for one person for 30 minutes to be there, there was also a coffee shop next door.

Random Post of the Week!

So I honestly don’t know how consistent I’m with these random posts of the week, I think my last one was on the… oh poop, ok so maybe my last one was over a month ago… well anyways it’s national creativity day! Now I actually just figured this out, I know I know it’s weird that I didn’t know this off the top of my head! When I was thinking of writing this I didn’t intend it to be me me talking about creativity and such but since this day is the best day I guess I will.

So if you’ve looked through my blog I think it’s pretty obvious I’m a artist, you know with all the weird titles of me trying to figure out how to describe my art and such. Like oh ya over here there’s a nice landscape painting next to a blue necklace, did you hear that Karen, blue…yup blue! Wait where was I going with this, oh yes my blog. Ya so I’m a artist, I should know when national creativity day is so now I should “celebrate” this wonderful day by talking about art.

So I think I’m going to put in some pictures of my favorites, here⬇️

So here are just 5 of them and I hope you like them too. Anyways let’s talk about how much I love art. It helps me through hard times and gives me a hobby but also no money😂 To be honest since I’m only a teenager though I guess I don’t use it for anything else but still, very expensive hobby. I like sharing my art with people and I would like to start selling jewelry but I don’t know where to start. Long story short o tried setting up a Etsy account but because of my age I’m not supposed to so I have to figure that out with the help of my parents.

So ya you could say this day is important to me but at the same time you can’t, since I just found out that today was national creativity day, but never the less it still gives me a reason to talk about art more. That’s all for now…

Haha it’s not really all for now… if your reading this tell me what your favorite type of art is!

How I met my Best Friend

The Story of how I met my Best Friend (well one of them)

I was in 4th grade, just starting at a new school since I moved. The day went fine, well as fine as a new elementary school can go. Since I am awesome, and probably because I have a twin, everyone kept coming up to us and asking to be our friend. Now they were nice girls, which changed soon enough, but that’s not what I’m talking about. This is the story of how I met my best friend.

Two weeks or so after that we started riding the bus. Now at our old school there weren’t any busses so it was me and my sisters first time. What we didn’t know was there would be a awesome girl we would soon meet that lived right across the street. Her name is Vanessa, V for short.

When the time came to go home I was very nervous to ride the bus. We got on everything was fine. We started talked to a girl who was very nice halfway through the ride. She gave us her number on a purple piece of paper, I don’t know how I remember this. We asked her where she lived and it turned out we lived on the same street! We were all so happy we finally could live by a girl around our age (V is a year older than me and my sister).

Both of our parents were at the bus stop. We asked our mom if she could come over and she said sure, and so did her dad. We hung out the whole rest of the day and it was great! Turns out she lives directly across the street from us too. We are still friends now so around 4 or 5 hears later.