Pie: When you want to scream because:

You feel like you are watching your life melt away while you lay in your bed

You are too sick to do what you love to do

When even the easiest things are out of reach

When you feel like your friendships are passing you by

When you look in the mirror and only see weight gain

When you can’t get past the ugly half moons underneath your eyes.

When you are falling behind on schoolwork and you are too tired to complete it.

When all your body wants to do is sleep

When you just want to your body to feel as good as your taste buds (when eating chocolate )

You feel defined by your illness

You think of the people who have it worse than you do

You don’t feel independent you feel caged.

When all you can do is scream….

My advice to you is plain and simple, just scream. It makes you feel better, really. So, go for it. Let out one hardy scream. Scream and let the walls feel your pain. I’ve done it at least twice this week. See why I hate POTS? See why I hate chronic illnesses? When you can only express your struggle by screaming. Man it’s been a hard month. When I get sick it takes weeks. First off I just feel dreadful for a couple of weeks and THEN I get sick. I got sick with this awful case of bronchitis. I coughed up a bit of blood and my Mom and sister almost took me to the hospital. But I was way too sick to notice. It was kind of funny though, my horse got bronchitis from the dust in his hay so while I was sick I was outside round-penning him (making him run in circles for exercise in a round pen) and he and I were coughing and coughing and Teddy was laughing and laughing it was hilarious! Now you might ask what kind of sadist makes their horse run in circles when he is sick? Well, we weren’t told he was sick we were told that he had dust in his lungs so he needed to run to get it out. SORRY PACO!!!! He and I are totally over being sick just in case you were wondering ❤  My family made it so much better though. They would make me delicious food and take care of me because they are amazing. Months like these are the types I keep hidden from my friends and people at school. No one needs to know because I am not the person I am when I am sick and dead asleep in my bed cocoon. I know it’s not normal for a 17 year old to be sleeping at 2 in the afternoon while other girls are LIVING and laughing. I make the best out of those naps I must say. I listen to the best music and make sure to have the sweetest dreams. I have a warm kitty to keep me company and enough tea to sink a ship.

When it is too much for you just scream it out. Your cat will understand, or at least leave the room and judge you. But they have every right to judge us we are screaming like crazy people (oh wait that’s me). Remember to think about the people in your house before you start screaming, I tend to scream when I am alone. I do this to avoid scaring my parents to death. If I screamed they would think I fell off a cliff……(no I don’t have a cliff in my house but STILL!) Just keep in mind (while you are screaming) that with POTS you are on cloud nine one week and sick as a dog the next. So, while you are in your sickly dog state think of cloud nine but not vice versa because negative thoughts are NO GOOD! Yeah they slip in anyway but don’t encourage the little boogers! It’s like feeding cockroaches inside your house. Do you want to have cockroaches living in your soul? Hmm? I didn’t think so.

For the most part when I am having good weeks I don’t even think of myself as sickly. I just forget because in all honesty it just is what it is. Yes, I can work to make it better but I can’t dwell on the fact because that’s completely depressing. I don’t like being sad (captain obvious). While living through my “screaming weeks” it can be really scary. But on my good weeks I just enjoy what I have. Every day I work hard to help pave the road for my recovery. I do this without even acknowledging it. I work out, laugh, drink water, eat salt, and I think of these things as the essentials for my life. After a big tennis match I think, ‘okay I need some salt, water, and food’. Train your brain to do this. It takes time but don’t wait because the longer you wait for a change to magically come the longer you will be in that bed.

I know you don’t want to be in your bed. I know that. You know that. Anyone who knows your struggles knows that. One bright side of POTS is if you know how to treat it will get better. You can rely on yourself to reach these goals. You are your own personal doctor. You don’t have a tumor and are relying on the doctors to take it out surgery and relying on medication to make everything better. You may take pills BUT you have to learn how to be your own doctor, your own motivator, your own friend, and your own enemy. Yeah, yeah, yeah, you are sick but please just try taking the first few steps on this road. That’s the only way your wishes and dreams of being a healthy foxy person will come true. You want that right? Silly question Pie. You have to crawl to walk and practice to create beautiful music we are so LUCKY to have to work at feeling normal. Mhmm……

But I can scream oh man can I scream. I can scream because sometimes that’s all I can do. And if that’s all I can do why not do it? So my dear readers, enjoy screaming your heads off. Because while you are screaming take heart in knowing I will be doing the exact same thing. Let’s scream together.

Until we scream again ❤



One comment on “Scream

  1. Eileen says:

    I am SOOOOO glad your mom shared this with me! This is so from the heart and soul. You have found your voice. Never lose that. It took me 50 years of living to find that. This completely captures what you go through every day, and you never let it stop you! You are brilliant and beautiful, inside and out, and always remember that, even through the rougher times. For those of us who have these so-called “invisible” diseases, we are given two opportunities: to really understand the human condition and its frailties; to offer support, encouragement, and compassion for others’ suffering, whether from POTS or not, because you deeply understand what others endure , and to teach others that you are not your disease, that you offer so many beautiful things to the world.

    I miss you both SO much. I hope we can see each other this summer.

    I send you both my love. You are a blessing in my life.

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