The Medical Dorm

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, n...

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 w...

          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...

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 diagn...