Wednesday, April 12, 2017

Gastroparesis Pie Face Challenge

Think back to a couple of years ago.  You probably participated or watched many people dump ice water on themselves for the ALS Ice Bucket Challenge.  It spread awareness throughout the world and also helped to get more funding for researching ALS.  Hopefully someday they will be able to find a cure.  ALS sadly is one of many rare diseases that have no cure.  I am one of many around the world that suffer from a rare incurable disease.  Actually, I have 5 rare motility disorders, but today I am going to focus on the one that started it all... Gastroparesis.

Gastroparesis is a rare motility disorder that effects the way the food moves through your stomach.  Basically, your stomach is paralyzed.  Symptoms of this disease are nausea, getting full after only a few bites of food, intense pain in the upper abdomen, vomiting, and malnutrition.  Many end up living off of feeding tubes or TPN because they are not able to receive nourishment through food. This disease is not well known (even in the medical field), under researched, has no cure, and many that suffer from this have no idea why they got sick.  Sadly, some have even passed away due to complications from GP.


For me, I got what I thought was the stomach flu just over 5 years ago, but it never went away.  It took two years of changing my diet, 6 doctors passing me off to the next one, multiple tests, weekend ER visits to get rehydrated so that I could teach the next week, and WebMD before I was diagnosed.  I'd been sick for two years when I collapsed while teaching and was rushed to the hospital where a friend found GP on WebMD.  She had to beg the doctors to test me for it and then I had to wait for them to figure out how to even do the test before I was finally diagnosed.

My mom and I were ecstatic because there was a name for this disease.  We soon learned that there was no cure and the doctors had no idea why I had this disease.  All they could do was treat the symptoms.  Over the next 2 1/2 years I would have ups and downs but eventually I ended up with 4 tubes to keep me alive.  A feeding tube, decompression tube, and a double picc line for IV hydration. I couldn't eat, drink, take meds orally, or even chew gum without vomiting.  Even without eating anything I would vomit 5-20 times a day.

My brother came up with his own name for it, "Rachel's Law".  Watch below to see his explanation of Rachel's Law. :)


This disease impacts not only me but also my parents, siblings, nieces and nephews, friends, students, and employers.  I have been so blessed to have so many loving people around me praying for me, helping me, and fighting for me.  To all of you I ask you to please help spread awareness of GP.

By participating in the GP Pie Face Challenge you will not only be helping me to hopefully receive answers for WHY I have this someday, but also for all of the other people around the world who are suffering with this disease and have no answers or who have the symptoms but didn't know the name for what they're going through.

Participating is easy...

1. Videotape yourself smashing a pie in your face after explaining what GP is
2. Nominate at least 3 people to participate (including someone well known is a bonus)
3. Post your video to the GP Pie Face Challenge Facebook page as well as on every social media site possible
4. If you are able, donate to G-Pact so that they can continue researching these motility disorders

WHY a pie in the face?  Well people with GP tend to fear food because of what it does to them.  For many food is no longer enjoyable, but yet we need it to survive.  Social activities almost always include food and so it makes going out with friends difficult at times.  For us, it feels like pies are constantly being smashed into our faces as many are terrified of eating.  That is why it is the GP Pie Face Challenge.

I was nominated by a dear friend who also suffers from this disease, but before I would participate I did my research on the legitimacy of both the challenge as well as donating to G-Pact.  I am proud to say that the challenge is spreading and that G-Pact is the best place to donate because they are dedicated to helping us find doctors who know how to treat this disease as well as to researching this disease.  With your help maybe someday soon G-Pact can find the answer as to WHY people are getting idiopathic gastroparesis.

As I debated over doing this, I had a line from a tv show that kept eating at me.  The show is called When Calls the Heart and it is on the Hallmark Channel.  I love this show because it is wholesome, family oriented, and about a teacher in the early 1900's.  The line was, "BAD THINGS HAPPEN IF GOOD PEOPLE DO NOTHING."  I can not sit silently and let others go undiagnosed so today I am doing something.


Here is the link to my video: GP Pie Face Challenge
If you see this consider yourself nominated.  If you really do not want to smash a pie in your face, then please share this on every social media site possible to help spread awareness for GP.