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Anaphylaxis Awareness Day!!

Today is anaphylaxis awareness day. 
I am celebrating by being in urgent care following anaphylaxis. As you can see, I always pull out all the stops for my parties.

If you are friends of mine, you should know that I carry an epipen. Most people who have an anaphylaxis or who have serious allergies carry one. It is designed to be easy to inject in case of a bad reaction. 

You should learn how to use an epipen, even if you know no one who has serious reactions- if someone has a reaction in front of you…do you want to watch them die just because you didn’t know how to administer it? 
So here’s how it goes. 

1. Pull off the blue cap(s). Some brands have two, and some brands only have one. 

2. Aim for the meaty part of the thigh. 

3. Stab. Like you mean it 

4. Hold it for ten seconds- count out loud if possible, that way the person may also hear it. 

5. Remove the pen. Some epipens do not have a retractable needle- be careful not to puncture yourself. 

6. Dial 911. (This is an important one, as epi only is a stop gap.)

7. Stay with the person until the ambulance arrives.

8. Congratulate yourself on a job well done. It’s scary, and you should be proud of yourself. 
Anaphylaxis is quite dangerous, and needs to be treated appropriately. But remember: epi pens are designed to be easy to use. You can do it! Additionally, most epipens have instructions and diagrams on the side to help you use them properly. When it doubt, epi it out!

For my fellow anaphylaxis friends: this is not easy. And it’s in no way fun. But you are not alone, and we will make it through. 

When Silver Linings are Hard to See

I’m having a rough day. As one of my best friends would call it, an “I wish I weren’t sick” day.

Thanks for the phrase, Liv 🙂
 
 Most of the time, I think I handle being chronically ill and all the baggage (sometimes literally)  that comes with it fabulously.  After all, what am I supposed to do? When illness is a huge part of your life, you find a way to live with it. I do things while in pain, because if I waited for the pain to subside, I might never leave my bed. I try my hardest to be cheery, even when I feel like crap. Those that love me can generally see right  through my false cheer, and even more on a difficult mental day.
On the “I wish I weren’t sick” days, everything feels a million times harder. It all adds up- pain, nausea, fatigue- like an overdrawn back account you have to pay off sometime. On these days, it’s really hard to hold it all together.
It’s okay to not be strong all the time. It’s okay to spend a day doing nothing, or doing nothing but calming things. We spend so much time taking care of our bodies, I think sometimes we forget that we also have to take care of our minds. So if you’re having an “I wish I weren’t…” day, practice some self-care. Take a bath, watch a funny movie, put on fancy makeup just for the heck of it. Don’t think you have to focus on the silver linings and the collateral positives one hundred percent of the time- being positive all the time is impossible, especially when you don’t feel positive.

Today, I’m sad about my pain, I’m sad about the life I once had….and all of that is perfectly fine. 

#howdoyouseeme

The video begins with Olivia Wilde, a white, able bodied actress, doing all these lovely things in her life. She runs, she hangs out with her family- she looks happy, healthy, and content.

“I see myself as a daughter, a sister, a best friend. As a person you can rely on. I see myself meeting someone that I can share my life with. I see myself singing, dancing, and laughing, until I cannot breathe. And also crying sometimes.”

The voiceover continues throughout, a message of possibilities and inspiration, and at the end, says “This is how I see myself. How do you see me?” And at this point, you see the only shot in the entire video of AnnaRose, the girl with Down Syndrome who was speaking.
Now, the message is that you should see the person first, before the syndrome, and to ask the viewers how they see a person who has Down Syndrome- as a person first, or as the disability. And it’s an extremely valid question.

However, this video, designed to promote World Down Syndrome Day, has a major flaw.

AnnaRose could have done all of those things herself. By putting in a thin, white, famous, able bodied actress to replace her, you erase the disability. Do disabled people need to see themselves as able-bodied, in order to be seen? Do we need to be seen as able bodied, in order to be seen as people first? Can we only be successful, beautiful, happy- if you first completely erase our disabilities? This actress with Down Syndrome is capable of doing everything you see an able bodied actress doing. Why should she have to first erase her disability in order to do so?

This is an assumption that is deeply engrained: that someone with a disability could not possibly be happy or whole.

And it’s dangerous.

Why I Appreciate The Fault in Our Stars and Red Band Society

the-fault-in-our-stars-quotes-ftr

I belong to a community I never wanted to, but that has changed my life in ways I cannot even express. I am part of the group of young adults and teenagers who have chronic illnesses, and are fighting these diseases constantly. Unfortunately, as with any situation, it’s difficult to understand what someone is going through if you haven’t gone through it. I met my best friend through my illness. I have also met so many other fabulous people who have helped me through this journey. I read The Fault in Our Stars by John Green before and after I got sick, and empathized greatly with the main character, Hazel. I watched the movie when it came out in the theatre with my best friend. Similarly, I was ecstatic when I discovered that there would be a TV show, (Red Band Society by Fox) about teenagers in the hospital. I was in the hospital when it came out, and I watched the episodes beneath the glow of my IV pole.

 

However, not everyone in the chronic illness world shared my views. Many chronically ill teens and young people were upset by the glorification of illness, and how it forms a very untrue portrait of chronic and critical illness in the public eye. And I agree- the TFIOS movie and Red Band show are both inaccurate. Devastatingly so.

 

The characters in the Red Band Society make the hospital look like a party, complete with beer, rooftop fires, and romance. I’ve spent over 5 months in the hospital over the past twelve, and (spoiler alert) I’ve never been to an awesome rooftop party, and I’ve never fallen in love. The Fault in Our Stars, especially the movie, makes terminal cancer look like a literal walk in the park, complete with dream vacations and a star crossed love story.

 

Yes, there is a lot of inaccuracy and drama in these fictional stories about illness. But what are we supposed to expect? This is Hollywood. Everything is dramatized to look much larger than life. There are very few movies and TV shows I have seen that aren’t glorified. I hate to say it but it’s true: it’s hard to sell a story that shows real life.

 

But what is the alternative to having these stories be blown up larger than life for the big screen? Not showing them? Keeping everyone who doesn’t have a link to these diseases in the dark? So many people have no idea that young people can get sick. Teenagers are supposed to be at the pinnacle of health, the topmost point of physical excellence. Even doctors sometimes seem to have difficulty believing that I, a sixteen year old, am totally dependent on a feeding tube for survival. Yet I am not alone in my situation. Shows like The Fault in Our Stars and Red Band Society spread awareness. They show people that there are teenagers who are not healthy. They show that there are diseases that modern medicine cannot fix- and we need awareness to find solutions.

 

This article was also published on The Mighty.

Welcome!

Welcome!

 

I’m a student who has been dealing with chronic illness for almost three years now. I love superheroes, bright lipstick, and loud music.

My goal is  to translate my own experiences into something that can help others. This blog is one way I hope to do that. I also work with several organizations that hope to make a real difference.

My life has changed in immeasurable ways because of chronic illness, but it is not all I am. It is not all I will be, and my future is not defined by it.

Whatever demons you are fighting today, know that you are stronger than them, and that you are not alone. And if you are, like me, an actual mutant, hey, maybe there’s a place at Xavier’s school. (A girl can dream, right?)

Kudos to you if you caught the reference.