March 16, 2019

Today I had another personal training lesson.

We started off with some high legs, but then it turned into lunges and jump squats. The cardio became too much and I had to rest a lot.

Then, something dreadful happened. Someone said, “Hi.” I looked up and saw my biomedical science teacher.

Our relationship is tense after something I can’t tell you about. It was VERY awkward seeing him at the gym, especially when I’m at my weakest point.

He asked me if I was okay after seeing me out of breath. I said “Yeah,” but I really wanted to say, “I never give up,” but the point was probably mute.

My trainer taught me how to use a pull up machine that took a portion of my weight away. The more weight you add onto the machine, the easier it is for you.

He also taught me how to use some machines to help me stretch. That way I could work on my flexibility.

My core is really bad. I have almost no core strength. We focused on exercising my core today, but I couldn’t do it. Whenever I tried to do a sit up, my back just hurt instead.

My personal trainer thinks I spend too much time sitting down, so he recommended for me to stand every thirty minutes.

I was so sore after the workout. It was a good workout, but it was intense.

March 16, 2019

My calves started hurting again, so I took 2 Tylenol to deal with the pain. It must be from the workouts.

Actually, it’s surprising that I don’t have these leg pains after every workout. Considering how bad it was last year (I was almost bedridden), I’m glad that my legs got stronger.

March 18, 2019

I had another swimming lesson today.

During swimming, I have to share the lane. Today I shared the lane with another girl that was also having a private lesson.

If I had to guess her age, I’d say she’s ten. Honestly, she’s a better swimmer than me. Maybe I’m insecure, but seeing someone drastically younger than me being better than me makes me self conscious. 😳

March 22, 2019

Today the Pink Dot Club met after school to make quilts. It’s for the competition (see March 5, 2019).

While making quilts, Maddy pulled me aside. She was going to do a faux 73 Questions with Justin Wang.

It was awkward filming. She had me go around and act natural (walking around the house & eating cookies) while she asked questions. Someone also left their phone in the kitchen and it rang during the interview.

Maddy told me something really special. She said the sophomores (my classmates) who come to the club come to support me.

That’s touching. How sweet! 😁

March 23, 2019

So today I went to Starbucks to meet with Maddy. We’re doing another faux 73 Questions with Rob Floss (see March 7, 2019).

I learned today that he doesn’t really take care of his health. He doesn’t do any exercise! The only thing he does is take care of his nutrition, which he obviously should, considering his diabetes.

Now, I know that it doesn’t have to be super strict, but he literally had a double transplant. He should really be doing more than taking meds and watching out for “nutrition”.

My grandma is 90 and she does EVERYTHING to take care of her health. Everything is physical therapy: walking back and forth in the hallway, balancing on a balance board, and putting her legs up and down.

So I’m not going to take his age as an excuse.

He said, “Happiness is the best way to take care of your health.”

Uh-huh.

He also told me that he sometimes ate rare steak, ate sushi, and drank alcohol.

He said, “You need to have a life.”

I’m sorry, I need to have a life?

That’s as dumb as a smoker saying, “You need to be cool.” Okay, maybe that’s a bit of an exaggeration. Yes, I admit it’s okay to slip up every now and then, but don’t make excuses for it!

I’m trying to live longer than 15 years, so I have to be very strict.

March 24, 2019

I just realized something today, that I probably should’ve realized sooner: I’m going to die young.

I’m going to die at 30.

You might not know this, but a heart doesn’t last forever after transplant. The average heart after transplant lasts for 15 years.

I got my heart transplant when I was 15, and the average heart lasts for 15 years. I’m going to die at 30.

I’m not scared, which is weird. I’m not afraid, because it’s so long away.

15 years seems so longs, but 15 years also seems so short.

And it’s not fair. It’s so not fair.

An average person could eat junk food all their life, never exercise a day in their life, and never go to the hospital, and still die of old age. Me, I have to eat “nutritiously”, exercise six times a week, and go to the hospital semiannually, and die at 30.

Why do I have to suffer through pain just to stay alive?

Sure, I could get another heart transplant at 30, but I have to suffer through THAT again. And I really don’t want to. Also, let’s be real, if I had a heart transplant every 15 years, then I’d have to have 4,5 hearts to live until old age.

Lizzy, the person I met at the transplant reunion party, had her heart for 30 years. Could I be like that? Sure, but that’s only 30 years.

I would still have to have another transplant to live until age 75 (assuming my second heart also lasts 15 years). And what happens with that transplant?

Once one organ starts to fail, all your other organs start to fail. With my second heart transplant, will I need a double transplant? Will I need a kidney transplant, liver transplant, lung transplant, along with it?

And the heart transplant list is so uncertain. I was lucky to get a heart in 2 weeks (which is unheard of, by the way), but next time I’m not going to be as lucky. I could wait on the list for years.

I could die on the list.

Chronic heart failure happens so fast that it gets out of control. It’s like an exponential decay graph, and it’s out of our hands.

It makes me mad. When my classmates are settling down with their spouses, buying their first house, having kids, I won’t be there.

And I hate it.

I came here all this way to do what, do it again?

Update

I know I’ve probably scared you, or depressed you, but I’ve thought about, and I’m okay with the thought about not living until old age.

Lamenting and moping about my life isn’t going to help, and it won’t make myself better. I want to choose hope, so I will choose hope.

Medical research is growing at an exponential rate, and by the time I’m 50 there will definitely be new discoveries.

Maybe I won’t live forever, but I’ll live long enough. Fifteen years is pretty long, and who knows, maybe it’ll be longer.

Some people live more in 20 years than others do in 80. It’s not the time that matters, it’s the person.

David Tennant

March 26, 2019

I’m sick.  

The thing is, I’m not really worried about it that much. I’ve been sick before (June 3, 2019), and nothing really happened. Also, I’m approaching the one year mark anyways, so I’m not extremely vulnerable to infections.

I might seem very chillax compared to my other journal entries (December 6, 2018), but that’s just the way it is boo. I’m an unpredictable person, hahaha.

I decided to not go to school today, but only because today is a useless day anyways. Today at school is a block schedule, which means a full day of nothing in each class.

I also swam today, but only for twenty minutes. I was kind of debating about it, since it is an outdoor pool and I swim at nine in the evening, but whatever. Exercise number one.

Tomorrow I might go to school, but my mom doesn’t want me to risk it. I might get even more contaminated, but I have two tests.

March 26, 2019

Tomorrow I’ll meet with my G-tube doctor, and he’ll decide if it’s time to pull the G-tube out.

I’m scared, because in the past I’ve never had a good experience with that doctor. Like, never.

The G-tube is something I rely on, and it’s been hard trying to quit. I’m sorry if I’m not chronically ill enough for your sympathy.

Also, thinking about March 24, 2019, I have to go through with this entire process in fifteen years. Do I even need to pull it out?

Once it’s out, it’s out. For good.

That means if I slack off on nutrition, or become sick enough that I can’t eat, the door is closed. Forever.

Or if I go through surgery to get it inserted again. 😰

Would it be better in the long run to not remove it? Geez, I don’t want to think about it.