Emalie’s Fight Like a Girl Story (Cerebral Palsy)

Jun
28
2013

Emalie's Stroy (Cerebral Palsy) LRI have been fighting like a girl since birth.  I was born with cerebral palsy.  I had eight huge orthopedic surgeries between the ages of 4-17.  I’m blind in one eye and use a power wheelchair to get around.  None of that stopped me from going to college, graduating, and moving several hundred miles away from my family. I had it all. Until July 2011.

I began to have chronic, debilitating nausea and loss of appetite.  As a result I lost between 50-70lbs in about six months.  After extensive testing, I was diagnosed with idiopathic gastroparesis in November, 2011.  It means that my stomach empties too slowly.  It causes chronic nausea, and for some people, vomiting, acid reflux, bloating, abdominal pain, appetite loss and a feeling of being full after only a few bites.

In the nearly two years I’ve been sick, my life has changed drastically. I no longer eat by mouth if I can help it. I rely instead on Total Parenteral Nutrition to keep me alive. Even with that intervention, I still struggle with daily nausea. I no longer work because I require home health nursing to help manage my TPN.

While my social life is curtailed by this isolating disease, I have found a vibrant community online that has helped me continue to fight even on days when it all seems too hard. That support is the best thing to have come out of the last two years of hell.

Emalie
Virginia
Submitted 4-26-13

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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Comments

  1. valerie woodard says:

    Emalie,
    I was diagnosed with idiopathic gastroparesis a little over a year ago. I had just graduated nursing school and was starting my new job when I started having all these problems. I was lucky, I guess, from feading about other people…such as yourself. I was able to slow it down by changing my diet drastically. That has been onr of the hardest things to do for me, because there.were certain foods I just loved! My husband and I researched, alond with a dietician I work with, about different digestive enzymes and other things to keep things flowing the way they should. I ended up losing about 40 pounds and have now been at a stable weight for at least 4 months. I still have little flare ups, but nothing too terrible. I will keep you in my prayers and best of luck to you!!!
    Valerie

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