The Medical Dorm

I live a double life, there is no denying that. My friends see one thing but I know that is not who I really am. How do I manage to juggle so many identities at once, how do I explain who I am to others. My friends all see my outer shell, they see a girl who is in college. They see somebody just like them, they see a lie. When they leave school they go out with friends, have fun with family, they get to do whatever they want but I don't. I have to set alarms to make sure I take my medication throughout the day or else I will be to sick to attend class, my facade will be broken.  Even during classes I am forced to take medications, displaying to my peers that there is something wrong with me.   I am on a first name basis with all of my doctors as well as much of the ER staff. The hospital is the place where everybody knows my name. While my friends wonder where they will work, I wonder if I will ever be able to work.   I spend my weekends in the hospital getti...

When you have a chronic illness a lot people do not know how to respond or how to talk to you about it.  They can be confused, feel bad, or can be completely clueless.  Now some people are great, and they are the people that in someway can understand what you are going through (maybe they are going through it themselves, know someone who has, or they are just good at being there for you).  However, more often than not you find the individuals who have no idea how to address someone who is chronically ill.  Today we decided to tell you about 2 things people have said to us that aren’t the best things to say to someone who is chronically ill.   This honestly sounds like something that we could have made up.  I mean, who would say something like this to a person?  Sadly, this has happened a lot, and always leads the intense need/desire to roll your eyes.  The statement goes along the lines of “Oh I understand what you are going through--I watch ...

Tremors here today to talk about something that is kind of a big part of my life.  For those of you who are new here, or who don’t remember, I am missing a lot of my hair.  Basically, I am pretty much bald, give or take a few patches of hair here or there thanks to alopecia.  Because of this I wear hats, or a wig.  (Having little to no hair makes your head really cold, and at the same time you do not want to get a sunburn on your head)  I have had a wig for around 3 years now, and let’s just say that it is a love/hate relationship.   My primary wig is nice, like really nice.  It’s a human hair wig that matches my previous hair color almost perfectly.  The primary one that I wear is called a gripper, meaning that there is a band around it on the inside that grips my head making it more difficult for it to come off.  It goes past my shoulders, and has baby hairs cut to look more natural.  This is to prevent the usual boxy look of a w...

A cure.  Something that is so simple is something that is out of reach for so many.  A cure is defined as a substance or treatment that cures a disease or condition.  To many, all they need to do is receive the cure to what condition they have.  However, the two of us are not one of these people.  We are the people who desperately want a cure, but know that we most likely will not be able to get one.  We are forced to settle for various treatments and other methods to cope with these various medical conditions.  While a treatment is progress, it is not long term, and it does not magically take away all of the symptoms of the condition.   People always say things along the lines of “hoping for a cure.”  While hope is great, hope only goes so far.  I mean, a cure means that there is no more disease, and that you are healthy.  You do not know and probably do not know what we would do to hear the words that there is a cure f...

This came to the two of us one day, because if you think about it being chronically ill is harder in more ways than you think.  There more than the obvious hardships caused by being sick.  One of Tremors’ doctors said something to her recently that prompted this.  He said something along the lines of how doctors never 100% know what their patients are doing outside of the hospital / clinic.  Meaning that they do not always know the small struggles occurring at places such as school, or work.  He said that when someone is chronically ill, they have to have a true strength to deal with all of this and learn a lot from it.  Because, of this strength spoonies are pretty much able to live double lives, one being as a patient, and another as a human being.  From all of this, of course you are are able to learn some valuable lessons.  These lessons others may learn as well without having a chronic illness, but when you learn them due to a chronic illnes...

Happy Thanksgiving everybody. While the holidays are a great time, for people with chronic illness there can be some additional complications with all of the activity going on. This week we are writing about things that every person with chronic illness is thankful for. A diagnosis- A diagnosis seems so small and insignificant to some, or those without a chronic illness.  However, a diagnosis allows for help, and it gives answers.  It puts a name to the symptoms. Having people around that understand- These people are AMAZING, they are the ones who understand what is happening and do not judge.  They are the people that are your rock, and you always know that they are in your corner.   A break to lie down once in awhile- Sometimes all you need are a few days to take it easy.  Even though there are downsides, and family activities may be too much at times, the break is needed.  Not having to get up to go to work/class allows for a...

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 ...

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 w...

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...