Everything You Want to Know

For this blog we are answering some questions that we have been asked throughout our lives'. Some of the questions make complete sense, but for entertainment we will also be answering some of the most ridiculous questions we have been asked. Hope you enjoy :)

Whats wrong with you?

Tremors: So clearly I have medical problems, anybody can see that. I jeebie a full week out of the month. I can't sit still, it's not like this condition is nice enough to take a break when I have to go to class. One day I woke up and my hair decided it was no longer committed to my scalp. Wouldn't you want to experience that in eighth grade, because I sure didn't. I also have a port which is a plastic triangle that connects a catheter or tube that goes to my heart. This helps deliver medication and make blood draws possible because my veins are not very accessible. 

Nemo: So clearly I have medical problems, but if you have read any other blog post you already know that. To recap, my heart is not great, you know since I only have half of it, oh and I forgot to mention before but my heart is also on the right side of my chest. My joints are super bendable and like to dislocate. I am unable to eat a lot of foods and we have no idea why. My eyes don't work together so I can't go cross eyed and I may or may not have multiple spleens. 

Tremors and Nemo: The reality is we just answered the question  "What medical conditions do you have" so in answer to your question "what is wrong with you" the answer is NOTHING but you may need some help if you feel that question is appropriate. 

Do you have cancer?

Tremors: NO!!!!! Not everybody with hair loss has cancer. Tremors has even been asked this in the medical facility where she seriously thought there was a chart on her that had a diagnosis, but guess not. 

How are you alive?

Nemo: When I explain how my heart works the most common question I get is "how are you alive?" First of all I have no idea. Secondly doctors have no idea. Thirdly you can't ask someone how they are alive, it is rude and for all you know a very sensitive topic. Many their prognosis is bad, maybe they are dying, you just never know which means asking a stranger how they are alive is ALWAYS inappropriate. 

Is it contagious?

Tremors and Nemo: NO! Genetics are not contagious, at least not to you. You are already alive meaning that you already have genes. If this is your question we both highly recommend a basic biology course. You will have a great time and the world will no longer be burdened with this question. You may even make a friend in class. 

When are you going to die?

NONE OF YOUR BUSINESS! 

When are you going to be cured?

Tremors and Nemo: Never. Chronic conditions do not have a cure. Our conditions are both degenerative meaning that as we get older they will get worse. They are also so rare that nobody in the medical community has any idea what to do with us. The best we can hope for treatments but even those do not work long term. For somebody with a degenerative condition this is one of the hardest questions to answer. 

Are you on the transplant list yet?

Nemo: This is a legitimate question. One day I will probably need a transplant, but because my heart is on the right side of my chest we are not entirely sure how a transplant would be preformed. I am not on any list as my heart works fine for now. This is a bridge that me and my family will cross when we get to it. Our hope is to hold out as long as possible and that by the time I need a new heart medicine will have advanced to the point where that is not a problem. 

Is your twin sick also?

Nemo: No she is not, but she is affected by what I have. Siblings are affected by chronic conditions also weather they have to go to appointments or give up time and attention with their parents. Siblings will be discussed in a later blog post. 

When is your hair growing back?

Tremors: I have no idea. Alopecia is so unpredictable that even if my hair were to grow back which is unlikely there is no guarantee that it will stay. My hair can grow back different colors. There is no predictability with anything when it comes to alopecia, it kinda sucks. 

Why are you sick?

Nemo: So when I was little I really liked to lie. I lied to my mom and teachers and friends. Well it turns out that if you lie too much you run through all of your good luck. After that every time you lie the dark fairy takes a little piece of your heart from you. Suffice to say, I may want to work on my lying. If you are wondering about the dislocations, naturally the fairy needs to get in to your chest somehow. After using the original method (heart surgery scar) too many times, they just started pulling off my various limbs. Since she knew that she would have to pull them off again, she decided that she would only half attach them when putting them back on my body. Well, turns out if your limb is only part way attached it tends to dislocate, but you are SUPER FLEXIBLE. 

Tremors: One day the dark fairy was super bored  and decided they were going to cause mischief. She landed on my left shoulder and said jeebie, jeebie, jeebie, jeebie. This was her favorite word because in fairy language jeebie means prank. After a week of listening to her I finally  made her leave which she told me a week later seriously hurt her feelings. Her last words to me when leaving the second time were "I will go, but every month you will remember me and the pain that you caused me." Like clockwork every month, on the day that I met her I start to twitch. This is and always will be her prank to me. 

Tremors and Nemo: Yea as you may have guessed none of that is true. We don't know why we are sick, it was just luck of the draw and clearly we lost. Genetics just happen that way. 

How did you meet? (This refers to how Tremors and I ended up meeting each other)

Tremors and Nemo: We met in physics class on my (Nemo) first day of school. I was a transfer and Tremors was already attending this school. Tremors was nice enough to take pity on me when she realized I was lost, and super confused. Tremors sounds pretty cool... right? Not long after we figured out that we both had medical problems so obviously we were best friends because thats how the world works. Sorry for people without a chronic condition that don't understand that fundamental law. Naturally we became roommates. 

If you have a chronic condition and are asked a question that you don't want to answer then don't. You don't owe the world anything, you are who you are. OWN IT!

WE BELIEVE IN YOU!

Tremors and Nemo