Things my Chronic Illness Has Taught Me

Over the 14 years of my life I have learned many things due to my chronic Illness. Having any sort of illness is hard to deal with and teaches you how to deal with a lot more especially at a younger age.

-Don’t take life for granted

For a lot of people this is a given. Having to go through hospital admissions, bad days, medications and such causes you to be thankful for the little things. Being able to do things on your own, and feeling generally well can be rare for some. Even when I am not sick I can still feel fatigued or nausea’s. Doing to much in a day can cause me to overcome with fatigue or just generally feeling unwell.


Since a young age iv’e been taught to do these things that other kids don’t have to do. Having to do treatments and taking medications that rely solely on your doing isĀ  big responsibility for anyone, but when you have to do it at a young age it can be a struggle. When I was younger my parents helped me out, but since before I was 10 I was mainly taking all my medications and treatments by myself. It can stressful to always have to do these things to make sure my health is in good shape. If I didn’t do treatments I would end up in the hospital.

Then there’s all the doctors appointments. They can add up. My mom always drives me to them since, well, I can’t drive yet,but I have to be responsible for the work I missed in school since I usually have a Friday appointment. Then I have to make sure I have good grades and that I stay on top of it.


Sure everyone has some sort of independence. Of course I always have my sister by my side, but again I do my treatments by myself.

There’s a limit to the amount where you can branch yourself off. Ya I still need my parents and sisters help sometimes, but at a young age I learned independence.

I also appreciate that I have this independence along with the responsibility.

That’s all for now,



How my Illness makes me feel Older

Ever since I was born I’ve had to deal with this illness. Growing up it was always hard to deal with the extra responsibility I had. Not just that, but the actual disease that it causes your body to do. Luckily I did not get admitted when I was younger, but my parents have told me there had been a couple of close calls.

Of course my parents helped me a lot when I was younger, but as I grew up I had to be more and more responsible about it. I do appreciate it, sometimes it’s good to have extra responsibility,but there are limits we all have.

Any illness can make anyone feel twice there age. I am a teen, but I feel as though I have responsibilities of an adult.

It can be frustrating sometimes.

Having to do twice a day treatments with inhalers and nebulizers. Having to be on top of taking medications and doing treatments so you don’t end up in the hospital is stressful. It puts a lot of pressure on someone, physically and mentally.

That’s all for now,


P.s I am going to try to up,and more. I keep wanting to up,lad some of my sim builds, but I keep forgetting. I am starting school in a week so it Knut change, but I’m trying to at least upload once a day to be somewhat consistent.

My gtube set up

Since I recently just got a gtube I have added many things to my pharmacy of a nightstand. Today my mom took the stitches out so it hurts a little more today.

I always had a decent amount of health stuff on my nightstand and so I have an updated collection. I have a box full of my arubica, inhaler,spacer, a pencil, and some nose spray. For my gtube stuff I have some tape which I use to tape down the tube onto my stomach. Then I have alchohal pads to clean off the tape residue. I also have my extension tube and syringe. I replace both of these once a week.

The actual pump and stuff is on an iv pole. I use a towel every night to cover the light from it. I hung up my hope beads and right now I’m not running feeds, but there would usually be a feed bag hanging up here at night.

How I set up my gtube is shake the three bottles of formula, then pour them into a bag. I take that upstairs and I hook up the tube through the pump and prime it.

I hook up the extension tube to the actual gtube button on my stomach. I open the tube and put the syringe at the top, unclamp the tube and flush it. Before unhooking the syringe I clamp it. Then when I’m ready to go to bed I hook up the tube from the bag to the extension tube, unclamp, and press run.

That’s all for now,


Hospital Diaries-Gtubes and Discharges

So I didn’t upload the last couple days because I didn’t really feel like it.

So I got my gtube. Yay. My nurse had said that they put me on call. My surgery was originally moved to 9, but she came in around 7ish and asked me to change into a gown. So I went down a bit early. I still had the anxiety med in my system so I was more Bergius than anything. I went down to the pre op room. I answered question talked to the doctors and surgeons there and eventually the anasteiologist came in and gave me the relaxing stuff and rolled me back.

When I woke up I was in a decent amount of pain. They had it so I was getting pain meds every three hours so that was good. At 9 they started me on feeds. I started at 30 and every two hours they would up the rate 20 until I was at the goal rate of 90.

In 5 days I can take the sutchers out.

I got my picc taken out which is good. I still have a dressing on which I can take off around 7 tonight.

Because of my gtube I’m not doing the best because that would hurt. So I’m just doing inhalers and nebulizers. I’m trying to do the arubica.

That’s all for now,


Hospital Diaries #11

Today was a little more eventful than yesterday.

I took a shower. My respiratory therapist wasn’t the best and was an hour and a half late for my 8am treatment. She ended up showing up around 9:30, which was a bit ridiculous. I am most likely still getting discharged on Wednesday so I’m happy about that.

We took another leave on pass. We didn’t exactly leave the hospital, instead my dad brought my dog, Mya, up and we took her on a walk in a trail near the hospital. It was cool. She’s still young and she’s not the best mannered around other dogs and people, but she’s getting better at it. She didn’t bark and try to yank at them so that’s good.

My grandma and cousin came up and visited. My cousin got Brianna and I a large amount of smarties that will most likely last me a month or to considering I already had some.

At 12ish Vanessa came up and visited us. We went on a little walk in search for some Starbucks, but we weren’t successful. We did stop at the vending machines and get some chips.

I supposedly gained two pounds since yesterday, but I didn’t eat lunch and instead ate a load of smarties, so I think it’s just from all the sugar. I mean it’s not a bad thing I gained weight, I just think it’s not useful weight if that makes since.

I, of course, played sims. I’m working on a beach bungalow sort of thing with some items from the new patch update which are based on the Caribbean.

Last night we rented ready player one, which I now my favorite movie just above a quiet place. I highly recommend watching it. Plus for all you artists out there, the graphics are amazing.

I’m nervous to get a gtube. I would already be nervous to get a bronc even though I’ve had one before, but with the gtube I’m even more nervous. It’s like I’ve had 4 piccs before this one, but I’m still nervous before I got my 5th one.

I have a ct and pfts tomorrow, so that’s fun.

That’s all for now,