Tuesday, August 23, 2011
My Tubie Duckies are on their way to Canada and the SPN DuckNation. I sent it out UPS earlier this evening and they should arrive early next week. I included a letter explaining them in an envelope labeled "What are those things sticking out of the ducks' bellies? See inside for an explanation of these Tubie Duckies." Here's the letter I sent (it is long, but it didn't feel right to take away any of this information, as it would dull the importance of the DTP Awareness Week message.
Pretty cool idea starting up DuckNation! I looked all over to find rubber duckies in stores, but couldnít find much. The more I looked, the less I was interested in sending a duckie untilÖ The other day I was looking at pictures of the duckies in one monitor while using the other monitor to talk to people in a group for gastroparesis, a medical condition I have. Somehow the words ďtubieĒ and ďDuckieĒ got in my head at the same time and thus the idea for TUBIE DUCKIES was born! Why Tubie Duckie? Because of a simple reason: millions of people are being starved every day while they have full access to food, because their digestive systems arenít working.
Gastroparesis (GP) literally means ďparalyzed stomachĒ, chronic intestinal pseudo-obstruction (CIP) is paralyzed intestines, and together these are referred to as DTP, digestive tract paralysis. When there is damage to the vagus nerve, signals canít get from the brain to the internal organs, so food sits in the stomach and/or intestines longer than it should, preventing further eating and causes other health problems. There is no cure, the treatments dull the symptoms but can cause just as many problems as they help, and not eating to avoid extreme pain isnít an option. Some people (like me) are Ďluckyí enough to just change how, what, when, and why we eat (low fat/low fiber diet, eating tiny meals up to 10x/day), while others can never eat or drink again and must be put on feeding tubes or IV nutrition. This is where the term ďTubieĒ comes from - it is a nickname for kids who are put on alternate nutrition.
The most difficult part of DTP is often getting the diagnosis. Many doctors have either never heard of it or donít understand it, so it can take weeks, months, or years to receive help. Friendships and relationships are tested because the general public hasnít heard of it Ė there arenít commercials, pamphlets, or biology classes that mention it. Most people first hear of it when they or a loved one is diagnosed. The scary part about this is an estimated 8 MILLION Americans, 1 in 25 people, have some form of DTP!
There are no risk factors. There are no symptoms until itís too late. Thereís no preventing it. Absolutely anyone can find themselves with this condition; it affects all ages (even 2 day infants), races, socio-economic levels, body shapes and sizes, and fitness levels. Causes stretch from a simple virus to a head/neck injury to gastric bypass to no known cause whatsoever. No one is immune!
G-PACT is the non-profit organization helping people with DTP to navigate this condition. G-PACTís DTP Awareness Week (Aug 19-27) will be over by the time you get this, but Iím still participating in order to help spread the word in hopes of reaching out to those who are affected and donít know where to turn for help, and to inform the public that this condition exists. Doctors couldnít even explain gastroparesis to me when I was diagnosed and I donít want others to feel the fear I did at facing this condition alone. It would mean so much to me to have information about DTP/GP/CIP posted with my Tubie Duckies.
I would like to take Tubie Duckies beyond DuckNation and find a way to make hundreds (or more!) to give to kids who have feeding tubes (Tubies) so they have a little friend who is just like them. As you can see, Iíll have to come up with a safer idea for the tube, but Iím hopeful this will happen!
Thanks and Go DuckNation!
Monday, August 22, 2011
For people living with chronic and live-threatening conditions, it is important to understand your condition and what you can do to make your life a little easier. It's also important to have doctors who understand your condition. With gastroparesis, many doctors haven't heard of or understand it, so it is even more important for the patient to take in the knowledge needed to help her/himself live a healthier and longer life.
G-PACT (the non-profit supporting people with DTP (digestive tract paralysis) - which includes gastroparesis (GP - paralyzed stomach) and chronic intestinal pseudo-obstruction (CIP - paralyzed intestines) - is putting on a webinar about the anatomy and physiology of the digestive tract TOMORROW, Tuesday, August 23rd, at 8pm EST. This gives anyone who has a form of DTP (GP/CIP) a chance to learn more about the digestive tract, how it works, and probably will give some information specific to GP and CIP.
Facebook event to sign up: https://www.facebook.com/GPACT#!/eve
Knowledge is power - be powerful in your own life by continuing to learn new things about yourself, your body, and your life.
Sunday, August 21, 2011
Digestive Tract Paralysis (DTP) is a scary, confusing, and life-long condition. It can happen to anyone, at any time, from numerous causes. Once you have symptoms, it is already too late. No cure has been found and the treatments can only mask the symptoms - often causing as many problems as the condition itself. Millions of Americans have the condition - about 1 in 25 people - yet many doctors don't know about the condition let alone understand it, which means diagnosis can take weeks, months, or years.
Without awareness many more people will be forced to live a life of pain and mistreatment by others who refuse to believe the condition exists. Without awareness people will continue be STARVED daily while food is right in front of them. Without awareness you could someday find yourself with this condition and nowhere to turn for help.
I have DTP - both gastroparesis (paralyzed stomach) and CIP (chronic intestinal pseudo-obstruction - paralyzed intestines), though I still have the ability to eat some foods within a specific diet. This changes every day depending on my stress level, how much sleep I get, and if I've been too active during the day (I can't exercise). Many others can't ingest any food and must be fed through feeding tubes. Imagine how hard it is to be in social settings and unable to eat any food. Imagine never being able to taste your favorite foods or even drink water. Not a fun thought, huh?
To learn more and help spread the knowledge that could save your life or the lives of people you care about, check out www.g-pact.org or www.facebook.com/GPACT
Thursday, August 18, 2011
Here's an article for all of us who live with an invisible chronic illness. Accepting a condition doesn't mean liking it or thinking it is okay - it means understanding you can't control the condition but you can control how you deal with it.
When I mention gastroparesis or digestive tract paralysis to people then say I have it, they look at me and say I look great. "You don't look like you're sick." What I want to say is "Well you didn't look stupid until you opened your mouth." The truth is many conditions can't be seen with the eyes, only felt within the body or within the emotions of knowing a loved one is suffering.
I have received 7 medical diagnoses within the past year, none of which can be seen by looking at me. This is why I talk about it - no one would know if I didn't talk about it. Knowledge is my key and power - I hope others would want a little knowlege as well.
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