Sunday, August 28, 2011
Today was the last day of DTP Awareness Week. I've posted things in my facebook and SP status about DTP, on facebook I've posted videos and links to articles and blogs, on SP I've posted blogs and information on the Gastroparesis team, I've made Tubie Duckies as a unique way to get the word out, and I have told probably 10 people I've randomly met about DTP and GP. I also tried to get a friend who is a reporter to do a story, but last I heard she hasn't even heard from her editor if it can be done.
With all the effort I put into this week, while still working 8+ hours a day and doing all the things I have to do during a week (grocery shopping, errands, etc), I ran out of time to sleep. Due to lack of sleep, by Tuesday night my GP/CIP flared and I was having a hard time digesting again. On Friday I got a massage, but it didn't do as much as I wish it had (since my massage therapist left, no one else has been able to duplicate what she did). Today I was able to sort of digest again, and was closer to the calorie intake amount I need to maintain my weight. Yes, this was terrible for my body, but it was almost worth it because of what I was able to do to get the word out.
The problem is, I didn't see people without the condition stepping up to help spread the word. As I mentioned, the friend I asked if she could do a story waited a week after I first asked her to submit anything for approval. Now awareness week is over. None of my friends (I should probably call them acquaintances) reposted or even mentioned DTP. Chances are only 2 or 3 even read what I posted. I haven't counted on any friends in many years, but it just emphasizes how alone people can be when having a chronic medical condition. My family isn't helping (I'm not speaking to my mother and my father isn't happy about that, my sister and BIL are too busy, and I haven't seen any extended family in several years), obviously the friends on facebook aren't interested in helping, and I haven't had a boyfriend in 11 years. So other than the friends I've made here on SP, I have little to no support. Sometimes I want nothing more than to just lay down and not move and ask someone else to take care of me, but no one is there. Sometimes it isn't exactly safe for me to be driving because of my health, but I have no choice. Sometimes I just want someone to hold me while I cry and lie to me that it will somehow be okay, but there's no one willing.
Now that the MN state fair is going on, the news keeps talking about all the foods I can never eat, added to all the commercials of foods I can't eat, and I just want to scream that they are seriously lucky to have their health but look at the absolute GARBAGE they're filling their bodies with! So many movies I watch have themes of relationships, family, and how much someone is cared about - something I don't get to have. It seriously hurts that I am in a daily fight for my life and I have no one willing to help me. (Please note this excludes my friends here on SP, but you have to admit it's hard to help me in the ways I need it over SP. Know I do appreciate the support no matter what.)
Rhetorical question: Why don't I have family or close friends or someone to love me and help me fight for my life?
Friday, August 26, 2011
Yes, humans can live without eating. I know you don't believe it right now, but I challenge YOU to watch this video without crying.
Millions of Americans (and 10s of millions around the world) are living proof of what a person can accomplish without eating 'normal' food. People like us are eating special diets, liquid diets, or are being 'fed' through feeding tubes and IV nutrition. Digestive tract paralysis (including gastroparesis and chronic intestinal pseudo-obstruction) is a serious and debilitating condition where the digestive system doesn't have the ability to process food correctly, or sometimes at all. There is no cure and absolutely no one is immune. By learning about this condition you could help save the life of someone you love - or yourself - because many in the medical community don't understand it and this causes a delay in diagnosis for weeks, months, even years!
NEVER take your health for granted. One day you could wake up to find your life turned upside-down with a severe medical condition and then it could be too late.
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.
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