It Just Keeps Coming

           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 days straight even when all I wan to do it eat. Why can’t it be possible to gain something good, sometimes the hill is just to steep to climb, eventually it just feels like there is nothing left.
            I always had my life planned out, I knew exactly what I wanted to do. I wanted to be a pediatric cardiac nurse to help children that were born like I was. I was even realistic and knew that I would have to work twice as hard as everybody else to keep up while struggling with being sick. I was willing and up for the challenge.  Unfortunately, I learned that sometimes it’s just not possible to work hard enough to keep up with the demands of chronic medical conditions. Now I am stuck.
            I am stuck watching all of my friends that graduated live the life that I so desperately wanted. How is it possible to form a new life when your old life, your dream follows you around? I am stuck watching my sister travel the world and live a normal life while I can’t leave the state because I won't have medical insurance. How is it even possible to move forward knowing that every step you take will have a hurdle?


Comments

  1. KathyNovember 3, 2017 at 11:59 AM

    I can relate. I'm not as young as you, but I had to give up a nursing career due to severe asthma and an immune deficiency. It sucks. I recently read that we need to focus on what we can do, instead of on what we can't do. It's easier said than done.

    ReplyDelete
  2. AnonymousNovember 10, 2017 at 4:38 PM

    omh thanks I am too disabled RN and my career took a terrible turn in 1996 I made it to 2011 I went to psych loved it I am now homebound no friends no family there nuts hospice experience worst ever

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