The Medical Dorm

Now, if you have been on our blog before, you know that we are college students, and often talk about college life. Today, we decided to do that once again. Specifically, addressing somethings people often do not think of when in college. When you are chronically ill, some things just become a part of your everyday life.  Now, I’m not talking about pills, appointments, or restrictions.  I’m talking about the attitudes, and behavior changes.  I can’t tell you how many times Nemo and I have texted, or told each other how determined we are to get something done.  We have had multiple pep talks about graduating, and getting our degrees.  Going in depth about how we are going to let NOTHING stand in our way.  How our future is ours to make, and that we won’t let the doubters, or the administration get in our way.  To summarize the texts, it’s a lot of we can do this, and responses of hell yeah we can.           Pretty much the whole world is doubting us.  We are two chronica

                                                                              Even though I have spent a year on medical leave, I have been incredibly lucky. This year would have been much harder had I faced it alone, but I didn’t have to. A year ago I first met secret agent puppy. The most nerve-wracking time was flying across country to meet him for the first time. I was so anxious, worried that he wouldn’t like me, worried that his trainers wouldn’t like me. I wanted this to work so badly, because I desperately needed him more than anybody knew.             I have been fighting with my conditions for the past twenty-three years and it gets tiring. There are days where it would be so easy to give up, and feeling alone while everybody else is living their life just makes the situation worse. Prior to considering a service dog I got sick enough to have to leave nursing school, move back home, drop classes in OT school, and was facing leaving school all together which e

It gets really hard to keep track of who knows what concerning my medical condition.  I never know who knows the whole story, or who is in the dark.  This makes life a little bit more difficult.  If you didn’t already know, I (Tremors) am kinda bald.  By kinda, I mean that I do have some hair, but it’s patchy and does not stick around long (and it’s super short).  (Just ask Nemo, she looks for shapes in the patches)   Now, since I am in my own dorm room, my bathroom is connected to another room where two people I had not met before live.  So, they naturally did not know that their new bathroom buddy is a bald twenty-something girl.  This means that they believe they can get away with certain things.  They currently think that they can claim that the hairballs in the shower can’t possibly be theirs.  Or that the hair scattered across the floor must be mine, because if it was theirs it would be picked up ASAP.  Let me tell you, no one wants to pick up the hairballs.  And the bald gi

People often ask me (Tremors) what I think my life would be like if I did not have a chronic illness.  They always say something along the line of, how I must have had goals and dreams prior to my diagnosis.  That I was not born with this illness, and that I was diagnosed in high school.  To tell you the truth, I haven’t dreamed much about my life without my chronic illness.  Call me crazy, but I don’t think it does me much good.   Maybe I’m just not that much of an imaginative person.  I did not grow up with a dream school, or a plan of what I thought my life would be.  I never dreamed of how my wedding would look, or where I would travel if I had the ability to go anywhere.  To this day, I do not know why younger me decided against dreaming up my future.  Honestly, I am almost glad looking back.  I don’t want to dwell on what I cannot do.  I do not want to be stuck in the never ending cycles of what ifs, or if onlys.  I would much rather focus on what I can do.   To me, the wh

          It is weird to think of being defined by one thing but the reality is that my life is and always has been controlled by my disability. As a little girl all my friends played sports while I sat on the sidelines and watched. This was nobody's fault. I don't expect everyone to live with my restrictions but I do wish I knew what it was like to be able bodied even just for one day.           Would I have grown up playing sports? To this day all I remember about sports is trying to be like everybody else. What always ended up happening is that I would fall and get really hurt, often times winding up in a cast. Now we know this is because I had undiagnosed Ehlers Danlos Syndrome.          Would I still want to go in to medicine? My whole life I have wanted to help people the same way that others helped me when I was little, but without my health issues I would have never needed that help. What degree would I be pursuing, and furthermore would I have already graduated? Woul

Check out the new page on the sidebar entitles QUOTES. It is a page where we will be posting various quotes that we hear.  These are things that people say to us about our chronic illnesses.  Some of these people think they know best, and know what they are talking about, but they really don't.  This is a place for us to respond to the comments and questions we hear on a day to day basis.  THE QUOTES ARE NOW UP 

           I was born with a heart defect, actually multiple heart defects. It was so rare, what else could be wrong, I already got my misfortune with that diagnosis.   That didn’t stop anything though, why cant life just be a little bit more fair. I volunteer and try to help as many people as I can, I don’t deserve to have my life controlled by illness.             With the diagnosis of Hypoplastic Right Heart Syndrome I lost the dream of ever having biological kids, and gained the reality of one day needing a heart transplant. With the diagnosis of Ehlers Danlos I have to face that fact that one day I might be in a wheelchair, and gained the ability to dislocate my thumb by doing something as mundane as opening a microwave. With the diagnosis of Postural Orthostatic Tachycardia syndrome I lost by right to be a nurse, and gained the ability to get dizzy and faint when standing up. With my diagnosis of gastroperesis I lost my ability to eat and gained the ability to fast for four da

Both Nemo and I are college students.  While Nemo is nearing the end of her medical leave, I (Tremors) have been attending college classes.  Now, most would think that being chronically ill, and having a variety of medical problems would greatly limit our abilities.  You might even be thinking why are you two even in college? Even if you don’t think that, somebody does. To answer that, we are both stubborn, and decided that we wanted to be able to prove everyone who said we could not do this wrong.  Now, our classmates have figured out that something is up with each of us.  (Our professors have to be given notices about our accommodations so there are not many secrets) We are not exactly discreet.  For example, Nemo has a service dog, and I show up around campus bald under a beanie.  We have both had to take medications during class, and have both had to miss classes to take a quick trip to the hospital.  Most would think that we would be barely scraping by.  That we are at the bo

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 getting infusio

We don't think everyone knows what a chronic illness is.  They might have heard the term, or they may know someone who has a chronic illness.  However, they still may not fully grasp the subject.  For example, people close to us constantly ask when we are going to be cured.  News flash, we aren't, so the answer is never.  It's just something we have to learn to live with.  We will never be fully free from this condition.  We are reliant on doctors, nurses, and more medications than you can count.  Our phones can spell out medication names as well as what our conditions are with one letter.  We have good days, bad days, and straight up awful days.  At any moment our good days can become bad.  We can go out with friends somedays, but others we are stuck in bed.  We might have to cancel, we might not be feeling great.  We sometimes pretend that we are feeling okay when we really are not. We ask that people learn more about chronic illnesses.  No one is expecting everyone to k

No one goes out like this--certainly not us We have to admit that one of our professors gave the idea for this week’s post.   Let’s be honest here, no one walks around holding giant signs with their conditions listed.   Your diagnosis is not your label.   The question is why do some people believe that it is.   The answers to that are endless, but basically some people are just awful.   Why must our diagnosis be the only thing that we are?   Why can’t we be known as something that is positive?   We are both daughters, sisters, students and so much more than our diagnoses.   We love watching random movies and TV shows.   We love to relax and go out with friends.   Though we might not be able to do absolutely everything, we still try.   There are days where we just need to take a break, and others where we can act fairly normal.   We do not go out where we go and start giving out our diagnoses.   If necessary, or if we feel like it we might say something, but we don’t introduce