NYC Trip: Day 1-2

If you’ve wondered why I’ve been a little MIA this past week, it’s because my family and I went on vacation!

Day 1:

Our flight took off at 8:30am, and it’s a bit of a drive to the airport, so we left at 6:30am. I can’t remember the last time I was up at 6:30! Airport security went really well. The TSA agents usually harass my brother since he’s a type one diabetic and uses both a continuous glucose monitor and an insulin pump, but this time they were really nice about it. The flight went well and we landed at Laguardia airport. From Laguardia it was about a thirty minute Uber ride to our airbnb, which was in Hell’s Kitchen.

Our apartment was 800 sq. feet, so it was a bit of a squeeze with four people, but I think we all managed pretty well. We landed at around 2:00 pm est. so we were pretty hungry and ate lunch at a restaurant called Vynl that was right down 9th avenue. We didn’t have anything planned for day one, so we decided to walk around and get a lay of the land. Me and my mom went shopping, or at least we tried to haha. We got lost and ended up walking for six miles. We did however eventually find the stores we were looking for and I got two new shirts for the upcoming school year. During our time being lost we accidentally ended up by Trump Tower, and given everything that’s currently going on I felt compelled to do this…

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That evening we ate Turkish food at a great restaurant called Istanbul. After dinner we walked to Times Square. Times Square was so different than I had always imagined it. It was basically just a ton of screens and thousands of people staring at them in a trance. Honestly I found it kind of odd, but I enjoyed seeing such an iconic place. We walked around some more and then called it a night since we were all pretty tired.

Day Two:

Day two began bright and early again because we had tickets to go to the Statue of Liberty and Ellis Island. We had planned to take the metro, but we walked to the wrong station and in order to get there on time we had to take an Uber. Liberty Island was really nice! I was shocked at how small the statue of liberty actually is; I thought it was at least twice the size. Either way it was cool to see a symbol of such a huge part of American History.

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Next we went to Ellis Island. The only thing there is a museum about immigration, so we walked around the museum. I always feel like the best way to visit museums is when you have lots of time and are in the right headspace. It was really busy there, so it was hard to get into it, but the time we did spend there was fun, and it was cool to learn about the history of immigration in the United States. They had some audio recordings that would play when you walked by certain parts of the set, in order to try and give you a taste of some of things immigrants heard when they first arrived in America. A lot of the recordings said things like, “Go back to where you came from.” It’s incredibly disheartening to know that this still happens to immigrants everyday in America.

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After we got back to the city we decided to take the metro back to our apartment. Since it was a Sunday afternoon no one was taking the metro, and it was really quiet. For lunch that afternoon we had NY style pizza at a little shop in Hell’s Kitchen. That afternoon we walked around more, (this is a common theme lol) and then got ready to go see The Book of Mormon on Broadway. The Book of Mormon was such a fantastic show! It was hilarious, but also touched on very real issues within religion. I highly recommend seeing it!

 

This was my first time visiting NYC and I thoroughly enjoyed it. Travel days 3-5 will be up soon!

Have you ever been to NYC? What was your favorite thing you did there?

My First College Class Experience

Yesterday, August 10th, was the last day of my first college class!

For reference I took an art appreciation class as a 5 week Summer course.

Many aspects of this class felt a lot like high school. It was a fairly small classroom with around 25 students, and we sat at those typical desks that have the chair attached to the desk. For some reason my teacher didn’t seem to understand the difference between an art class and an art appreciation class. Typically in an art appreciation class you would learn how to analyze art and learn a little bit of the history of different art movements.

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We did the octopus as a quick exercise in class, and although it’s a little messy I’m pretty happy with mine. (two octopus tentacles painted kind of messily in hues of blue)

But did we do that? Haha no. I really shouldn’t complain because I got three hours for doing very little work, but at times it was frustrating. The majority of the class we painted. We painted a seed pod, an octopus, a collage we made out of magazine clippings, and the final painting was a group project where we each painted a piece of a collage. The other project we had was making a sculpture out of polymer clay and a plastic animal. We also had to visit an art gallery and an art museum.

As for my professor, there’s one thing I can say that I think explains his overall demeanor and teaching style pretty well. Last week we watched a documentary about yarn, riveting right? I always arrive to class about ten minutes early since I have a perpetual fear of being late. Since I was there early he was still setting things up. I’m not sure if he realized this or not but he was projecting his computer screen onto the wall. I was looking around the room when I noticed he was googling, “What is the definition of a medium in art?” It took every once of self-control I have to not audibly laugh. He never lectured or really gave directions, and all he would do is show us pictures of things and tell us to paint them. I kept waiting for the “lesson day” but  it never came. I didn’t really learn anything (expect that painting is really hard), but I also didn’t have to do much work so I’ll count it as a win.

I’m super proud of myself because I made it to every single class. 4 days a week for 5 weeks, 20 classes total. To a healthy person this wouldn’t be a big deal, but I haven’t been able to go even a whole week straight to class in five years. Of course it helped that it was only a few hours a day and I had no other commitments, but I would have never imagined even five months ago that I would be able to do this.

Things with chronic illness can change in the blink of an eye. I’ve been out of a flare for a while now, so realistically I know one is going to rear its ugly head soon, but being able to succeed in this class gives me hope for the Fall. I’m looking forward to being in school full time again.

It won’t always be this easy, but having something productive to do feels fulfilling!

The Language of Disability

Not that long ago I didn’t consider myself disabled. Society had taught me disabled people were in wheelchairs, had some level of impaired mobility, or had moderate to severe cognitive disabilities. Sure chronic illness had completely taken over my life, but in my eyes I wasn’t disabled enough.

Fast forward to maybe nine months ago, I realized I was in fact disabled by my chronic illnesses and took on the label with pride. For me disabled is both a description of how chronic illness affects my life and a political label. I don’t have a problem with being referred to as disabled, because it’s true.

A lot of people however don’t seem to like the word “disabled.” When I was in high school I applied to become a “Best Buddy” which is a program where you befriend someone in the special education program. Fortunately or unfortunately for me (depending on how you look at it) they didn’t have enough special ed kids for all of the volunteers to have a buddy, so I never got one.

I did go to a training class after school one day, and something from it has stuck with me. They talked about how you shouldn’t ever say someone is disabled, instead say “a person with a disability, differently abled, or handi-capable.” The funny thing about the language of disability is I only see parents/caretakers asking people not to say disabled, never actual disabled people. I’m sure there are disabled people out there who don’t like the term, but I personally haven’t run across any. Many people take on the label with pride and try to advocate for themselves and others with disabilities.

I personally have a problem with the term “differently abled.” Disabled people aren’t differently abled, they are disabled. There are things we can’t do, point blank, end of story. For me some days I can do something and the next day I can’t, but there are also things that I’m never abled to do no matter the circumstances. “A person with a disability” isn’t offensive, I just find it unnecessary. The argument for the other side is that you should put the person before the disability. I feel you don’t have to take that literally. As long as someone is being respectful and isn’t  using a demonizing or belittling tone, then there isn’t anything wrong with saying “disabled people” or a “disabled person.”

Of course you should treat someone like a human being, and not reduce them to their diagnosis. However I don’t fid it necessary to say “person with a disability” every time you speak about disabilities. What are your thoughts? Do you use the term disabled to describe yourself?

The Hair Perv: Chronically Misunderstood

In the fall of 2016 my PCP thought I might have pseudotumor cerebri. One of my mom’s coworkers daughters had this and went to see a neuro-ophthalmologist, so we decided I should see him and figure out if I actually had pseudotumor cerebri or not.

This was probably the weirdest doctors appointment I have ever had. To start it off we were shuffled between five different rooms to do a bunch of eye tests. No one explained anything or said why I was doing the tests. When we finally saw the doctor he looked at my eyes and said maybe five sentences to me. He told me I needed an MRI and he would give me a prescription for torodol. After four years (at the time) of chronic illness I was kind of offended that he thought  had never tried torodol. It’s pretty much the first pain med doctors try when you first become sick.

After I saw him there was one more eye test I had to do. An older man was running the machine and was getting everything set up. To be honest I don’t remember 100% what the test was for since the day was such a whirl-wind. The man had to put some sort of salt on my scalp and then put electrodes over the areas of salt. I had rather long hair at the time, and my hair is pretty thick. As he put the electrodes on my scalp he ran his finger through my hair and said, “I’m enjoying this way too much.”

“I’m enjoying this way too much”

What the hell is that supposed to mean? I was sixteen and that comment was incredibly inappropriate, plus my mom was standing right there. I have no idea why he thought that was an okay thing to think, let alone say. I was there to find answers to my chronic illnesses, not be hit on by some pervy old dude.

We did the MRI and found out I do not have a pseudotumor, so needless to say we’ve never been back. In those 4 four years pervious to that appointment no one would order an MRI for me, so at least I got that out of this mess.

Oh the things we go through to find answers to our chronic illnesses!

Ragged Doll

I am a ragged doll

Dropped in the mud too many times

Beaten, broken, and stained

 

I am a ragged doll

Cast aside

Sprawled out in the bottom of the toy chest

Bending beneath the weight of better newer toys

 

Toys that haven’t been stained

Haven’t been dropped in the mud

Haven’t been broken

 

I spend my nights awake

Wondering if someone will ever want this ragged doll

This ragged, broken doll

 

Some days I appear to be new

My porcelain skin has yet to start crazing

When I shatter will you still pick me over the other toys?

 

I’d want a shiny new doll if I were you

These stains are off putting

And these chips are more trouble than they’re worth

 

In a sea of shiny toys

Who would pick this ragged doll

This ragged, broken doll

Why Do Doctor’s Offices Suck So Much?

This is purely a rant on why I hate the receptionists in doctors offices.

 

Today I had an appointment with a sleep neurologist. My PCP referred me to him, and since I’ve had so much trouble with sleep and fatigue, I thought seeing him would be worth my time. His office is in the city so it’s a 30-45 minute drive depending on the traffic, and we had an 8:30 appointment, so I had to be up way earlier than I normally am.

Fora normal person this wouldn’t be that big of a deal. My body however, hates being up early. Whenever I get up before my body is ready I feel nauseous and get a headache. It’s also inevitable that in the afternoon I’ll crash, hard. Since this appointment was important though, I was willing to risk it.

After driving 45 minutes down there, we arrive to find out they cancelled our appointment. Apparently they had been calling the wrong phone number to confirm the appointment. Everyone makes mistakes, so this wouldn’t be a huge deal, but they had already called my mom multiple times on the correct number, so they did at one point have the right number. We also confirmed the appointment on their online patient portal.

The receptionist also tells us that we’re out of network and they don’t take our insurance. They should have never agreed to see me if they’re out of network. She tells us we could see him, if we paid $250 out of pocket. No ones time, in my opinion, is worth that much for one doctors visit. Since they had taken it upon themselves to cancel the appointment though, we wouldn’t even get to see him today.

Now that’s all bad, but they apologized right? Wrong. Both receptionists said it wasn’t there fault and it must have been someone else. We left because there is no use in arguing with incompetent people. An apology would have made this situation much better, but even when my mom called to try and talk to someone else, they didn’t apologize nor did they care. They even said that they had never heard of online conformation. To which my mom replied, “well then it sounds like you have another problem don’t you?” which made me crack up. They also repeated back her phone number wrong to her three times, which means after going to the office and talking to the receptionists there, they didn’t even change the number in the computer system.

Unfortunately this isn’t the first time this has happened. It’s at least the third time we’ve gone to a doctors office only to find out they canceled our appointment/didn’t take our insurance/never made the appointment in the first place. I understand that it’s a boring job, and that people make mistakes, but this was a long series of mistakes (probably made my multiple people) and they way the handled it was incredibly unprofessional. “I don’t care we screwed up, sucks for you” was the general attitude.

The office manager did called call my mom, and was apologetic. He’s trying to get us in on Monday and is giving us a discount. More than wasting my time, waking up early, wasting my moms time, and making her take half a day off work to take me, not having answers is the worst part. I’m happy this situation seems like it’s going to have a positive ending, but they don’t all turn out so well in the end.

Ugh. What are your experiences with difficult doctors office?

Have you ever showed up to a doctors office only to find out you don’t have an appointment?

 

Trumps Latest Attack on Trans Rights

I would like to say I was surprised to wake up yesterday morning and find the tweets about banning trans people from the military, but honestly nothing he does shocks me anymore.

This however did seem out of the blue to me. No conversation, only a declaration. While technically nothing is set in stone or law yet, even stating these kinds of hatful things is harmful. This is the slow way to eventually ban trans people from existing. If they can’t go to the bathroom and can’t in the military, where can trans people exist then?

I wouldn’t say that I personally support the military in all of its endeavors, but being pro-military or not isn’t what this is about. Your gender shouldn’t determine what you can and can’t do or what you can and can’t be in life. If your willing to put your life on the line, you should be welcomed with open arms and allowed to live an authentic life.

Trump claims trans people are a “burden” due to their medical costs. The US military has quite the track record of not taking care of their veterans, or active duty member for that matter when it comes to health care of any kind. Not to mention not all trans people medically transition, and you shouldn’t assume they will or want to.

There are also over 15,000 trans people currently serving in our military. What’s going to happen to them? He acts like he’s stopping trans people from joining the armed forces, but no trans people are already serving.  You cannot end sometimes career because of their gender identity. Are you going to discharge them like they did back when “don’t ask don’t tell” was a law? We’re going backwards on the progress we’ve made.

I believe this is just the beginning of an attack on the LGBTQIA+ community. He’s gone after trans people multiple times now, and it isn’t going to stop unless there is enough backlash. Even then it may not end. Gaby Dunn made a video about this, and she believes that Trump is going after trans people first, because they don’t always get the support that other members of the LGBTQIA+ members receive. I completely agree, and since that’s probably true everyone in the community, and everyone who is a decent human being, should show up and support trans people.

The LGBTQIA+ community is resilient and we will not let him get away with this.