The Medical Dorm

We have both had our illness be invisible as well as visible. My condition was invisible until about a year and a half ago when I began limping, falling, and needing to use accommodations in school. Tremors' condition is invisible after treatment as long as she keeps her wig on, however, before treatment becomes visible when she begins to jeebie (our first post explains what a jeebie is). Below are things that have been said to either one of both of us that we want to address because they are NOT true of us or anybody else. The fact that people feel that these are appropriate to say means that ablism is alive and well even in 2016.  "You are broken" There are two different definitions of broken. The first is "having been fractured or damaged and no longer in one piece or in working order." This is referring to a condition such as a broken arm, which I promise I do not have, well at least at this point in time.  The second definition is "having giv

When you walk in to the hospital and see a child laying in the bed you automatically feel bad for them but do you ever stop to look at the rest of the room. What you are not noticing is perhaps their sibling sitting in the corner, ignored, not making a sound. Everybody is always focused on the child that is sick which makes sense but that sibling in the corner is a person also.  We both have siblings that have been effected by our conditions. The reality is that any time there is a family member that is sick they automatically come first, they have to. The problem with this is that putting a child that is sick first for a few days until they get better is one thing but it becomes a lot more complicated when that child will never get better. This means that they come first, and will always come first. This creates a dynamic that is hard for the entire family.  I know about the sibling sitting in the corner of the hospital room because many years ago that was my sister. When I had my

Hi Everybody, We have not been posting as often on the blog because we have been trying to reach out to raise awareness for more people. To try to create a community we have a group on Facebook, as well as a twitter page. We will be actively communicating on all platforms, because lets be real, WE ARE SUPER EXCITED ABOUT THIS. We would love to hear from you. We will take suggestions for what you want us to post about as well answer questions that you have. While we have an interesting story the best way to really create a community is to hear from everybody. If you want us to post something on our blog you can also email it to us and we will post it and give you credit if you want. Our Facebook group is just for people that either have a chronic illness, or have a loved one with a chronic illness. If you are undiagnosed but live with a chronic illness you are more than welcome to join our group. We ask everybody a few questions to make sure that the group remains a safe and suppor

Tremors here.  Part of a parent’s job is to stand by their kid--no matter what.  They are suppose to pick up their kid when they fall down, make sure they are safe, stand by them when they are in need.  My parents were put to the test a few years ago.  (That’s putting it lightly)  I started having muscle spasms on my left side, and one day I fell off my lab chair at school.  I mean that was just a fantastic day in physics.  My parents were worried that I lost consciousness since I did not remember falling during class.  I could tell you what happened I was doing during the lab.  One minute I was on the chair, and the next I was on the floor.  I was taken to the ER and then I was taken via ambulance to another hospital.  I then spent a weekend connected to various wires and machines.  My parents and I were then told that I was making everything up and that it was all in my head.  Overall, it was a great weekend.  I was sent to a psychiatrist.  I fought my parents every step of the way

Hi, Nemo here. I am posting by myself today because tremors is still receiving treatment, and it has not been as kind as we all would have hoped it would be. This blog is an overview to my story. Doctors said that it was over before it even started, my mom was told that I was absolutely going to be stillborn. If you don't know what that means, it means that I would never see my first breath. Instead of trusting what the doctors had to say, my mom decided that no matter what I had she was going to deal with it, and even if I didn't live at least I would have a chance. Similarly, I have a healthy twin and terminating me would have most likely meant having to terminate her as well. This is no longer the case but when I was born it was. After my mom tried to have kids for 10 years there was no way she was about to give up. Well clearly I did not die. When I was born there were 13 doctors in the room just in case I managed to breathe, well I did. I did not need to be put on a ven

Tremors here.  Currently I am writing from my hospital bed, but before you freak out, it was planned.  I receive infusions every five weeks.  Most people say something along the lines of "every five weeks isn't too bad" or "it gives you a lot of free time."  Yes because giving up every fifth weekend is something I love doing.  I mean I have been doing this for a little over a year now.  Of course I would rather be hooked up to an IV pole for hours on end instead of hanging out with friends.  I receive an infusion of IVIG, which amazingly stops the muscle spasms that I have for four to four and a half weeks.  I would explain how this all works, but the doctors don't know, so I don't know.  Being stuck in a hospital bed for any stretch of time is no fun.  I think that anyone who has spent time in one will admit that. For me a weekend of IVIG consists of... Getting to the hospital at 9 am Hoping to get into a room before 12 pm Crossing fingers that you

Teachers are great, we are not bashing teachers by any stretch of the imagination. FUN FACT: Both of our parents are teachers.Teachers are smart, important, and care about their students. These are just some things that don't come with a degree and are not always common knowledge. It took us years to understand these things also. The only reason we are putting this up is because teachers play such a huge role in kids and young adults lives and this information may be helpful for somebody out there. Accommodations are Necessary  Student try to cheat the system, that is a very valid point. We have seen students try to cheat the system. Given this it is important to be able to separate out student who want extra time to complete homework the procrastinated on, and students that could not complete their homework for medical reasons. The reason that that is important is because a lot of students are afraid to use them. We don't want to be seen as lazy, incompetent, or like we are

So this is Nemo here. These past few weeks there are multiple midterms that I have had to take after the actual day assigned to take the test. Some responses are "you are so lucky" and "cool now you have more time to study." This is not true though, my main message here is SOMETIMES IT IS JUST EASIER TO TAKE THE EXAM. While everybody that is so jealous of the fact that I don't have to take the exam is busy taking the test, I am in the Emergency Room. This is my "ample study opportunity." Who doesn't want to study when they have an IV, multiple medications pulsing through them, and feel nauseous. Thats when I would be like wow what a great time to focus on school. The exam is over in two hours tops. I am in the emergency room each time for about nine hours. They also don't have any clue why I am sick. All the doctors at the ER had been able to discern is that they are way out of their league. What I remember from this week is being in the Eme

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, m

The jeebies are here which means that Tremors can't sit still. We are sitting in separate areas to avoid injury. The way that would go is I would sit next to Tremors. Tremors would jeebie and hit my arm. Obviously that would cause a shoulder dislocation which luckily Tremors would fix when she hit my arm from the other side on the next jeebie. This past month we have both done something completely ridiculous that any "normal" person would not have the opportunity to experience. Tremors was at the hospital receiving treatment which will be discussed in more depth in a later blog post. Tremors was in the bathroom and managed to jeebie and hit her head on the ONLY thing possible in the room. This who process from safe to stupid took under two minutes. Tremors was than confined to her bed by the treatment guru also known as Mom who also continuously laughed at her for the rest of treatment. Just to be clear treatment is three days long. As we all know as much as you hope yo

How many of you out there have been to the doctor for a serious condition and they look at you and say "Lets all just take a deep breath to calm down." Its like "hello" if i wanted to meditate I would have gone to youtube, NOT the doctor. Im not saying that meditation does not help others and does not have an importance to society. We believe it could even be used as part of a treatment plan, but it should not be the only treatment. No offense to anybody but I am not confused, stressed, or crazy I just need help. In case you are wondering, both of us have tried meditating. My experience was not great, but my roommates was downright hilarious. Her first meditation experience was as the hospital. It did not go well. They sent in the psych team and they had her close her eyes and picture two televisions on the beach. On one television she was having muscle spasms (jeebies) and on the other she was "normal" (because thats totally a thing). She was supposed to

In the introduction post we explained that between the two of us we have Satoyoshi, Ehlers Danlos, and Polysplenia. Now what you might be thinking is WHAT DOES THAT MEAN? Well, I must say, thats what most people think, honestly, that what we think as well. Here is an explanation ... Satoyoshi Syndrome is a rare autoimmune disease that effects 50 known people worldwide. FUN FACT: It is so rare that my neurologist diagnosed me from the Wikipedia page.  My symptoms are alopecia which means that I have lost most of the hair on my head. Muscle spasms that effect the left side of my body. They call it myoclonic twitches or something like that but we call it jeebies.  I also experience  amenorrhea which for some reason the male doctors thought was the only thing that needed to be fixed. FUN FACT: Guys can also have Satoyoshi if they have muscle spasms, alopecia and skeletal abnormalities. Ehlers Danlos is a genetic disorder that effects collagen throughout the entire body. This means th

We are college roommates, while we may look normal on the outside that is far from the truth. We both have rare medical conditions that even after years of tests, hospitalizations, and different treatments doctors are not completely able to understand or treat. I have half a heart on the right side of my chest caused by Polysplenia syndrome, Ehlers Danlos, which is a connective tissue disorder which causes constant dislocations, and severe scoliosis. My roommate has Satoyoshi Syndrome which is an incredibly rare autoimmune disease. This effects every aspect of our lives. The reason we are writing this blog is that there are many people out there, either diagnosed or not that may seem normal but struggle with their medical problems on a daily basis.