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Newsletters: Be All You Can Be
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Be All You Can Be

Elizabeth Tucker

 

The following article is a synopsis of the Friday morning main session at the 2006 Oley Conference in Salt Lake City, UT. Cheryl Thompson, PhD, RD, CNSD, was the moderator and there were five HPEN consumers on the panel: Rick Davis; Flute Snyder, PhD; Shawn Boulette, RN, BSN; Carol Pelissier and Roy George. Videos/DVDs of this and other sessions will be available to borrow from the Oley Foundation Library some time in the fall.

 

Cheryl Thompson, PhD, RD, CNSD recently completed her doctoral research entitled Fostering Coping Skills and Resilience in HEN Consumers. She began the session with a presentation highlighting examples of the coping tips her research uncovered. A summary of her favorite “top ten tips” are as follows:

 

10. Don’t dwell on it. Recognize the difference between dwelling on a problem and contemplating a solution. When you find yourself dwelling on an unsolvable situation, try to short circuit your thinking. Find a distraction (e.g. take a walk), put your feelings into writing, or try to look at the situation more objectively.

 

9. Turn a problem into a challenge. Changing how you view a situation can turn a defeatist attitude into a motivational force. Look at a problem as a challenge and you will find renewed enthusiasm to overcome it.

 

8. Change it – accept it – or, deal with it. Problem-focused coping strategies are actions taken to solve the problem or change the stressful situation. Emotion-focused coping strategies are aimed at reducing the negative impact a problem has on you by changing the way you think or feel about the stressful situation. To cope successfully with HPEN, it is essential to use constructive methods of both problem-focused and emotion-focused coping strategies.

 

7. HPEN is like a team sport. Your team has a quarterback – you. Becoming a skilled quarterback takes effort and perseverance. Your family members, friends, support groups and clinicians also function as part of your “team.” To succeed, you will repeatedly need to pick yourself up and get back in the “game;” and surround yourself with supportive teammates.

 

6. See one, do one, teach one. Improper or inadequate training causes stress and can lead to serious complications. Many times consumers are educated by being given a pamphlet or instructions (a “See one”). Actually, “doing one” is even more important to demonstrate your knowledge; and teaching someone else will reinforce the new skill and help you to master the new technique.

 

5. Ask yourself, “What was I thinking?” Whether you are aware of it or not, your mind engages in a constant stream of thoughts, which is sometimes called “self-talk.” Many times that self-talk can be negative. Because we tend to believe our own self-talk, we need to be aware of any negative thoughts we may be having and work to change them into more objective or positive thoughts. To learn more about a technique to change limited-thinking patterns, Cheryl suggested reading literature by Dr. Aaron Beck.

 

4. Seek and Accept Support. Asking for and then accepting help can be difficult. We need to understand that both are okay. Remember that helping can be rewarding, so pass it on. In addition, nurture those who help you. Start by remembering to say “thank you” as one simple way to show your appreciation.

 

3. Make every second count. Make the most of the time you spend with your health-care provider. One study found that patients spoke for an average of 18 seconds before their health care provider interrupted them. To maximize you medical appointments: be prepared (e.g. bring your list of questions and topics to discuss), be concise and to the point.

 

2. Focus on the positive. Dr. Martin Seligman teaches “learned optimism” and his books may be useful to many HPEN consumers. Foster an attitude of gratitude for the good things in your life. Start by writing down three things you are thankful for - every day. Instead of comparing your life to the “rich and famous,” rate it against those who have less fame and fortune. You can see your own situation in a more positive light if you compare yourself to someone in a similar situation or recognize there are people with worse problems than your own.

 

1. Take charge: Develop an attitude of personal responsibility and acknowledge that you have a choice in how you perceive and deal with the challenges in your life.

 

The Panelists’ Experiences

The first panel member, Rick Davis, believes in setting goals and being the best you can be. He had a stroke that paralyzed his esophagus and he used goal setting, first to walk – two floor tiles, then four floor tiles, until he had crossed the Grand Canyon. Next, he felt he would eventually learn to swallow. When he learned his muscles wouldn’t allow that, he decided he would become the best tube feeder he could be. He learned how to deal with not eating at social events or in restaurants. Then he worked on spending less time feeding; going from 10 hours a day to five minutes, three times a day.

 

Rick feels that coming to his first Oley Conference four years ago was one of the best things that happened to him since he had his stroke. Meeting others facing similar challenges and learning from the medical professionals have greatly improved his quality of life.

 

Surgery for cancer left Flute Snyder dependent on tube feeding. To help him cope with the frustrations, he writes humorous essays that let his friends know what he is experiencing. At the conference he shared some of his stories, including one about his tube falling out when he was working in a hardware mower repair shop.

 

“As I straightened up after lifting a mower, I felt a warm sensation running down my leg. I looked down to see my G-tube on the dirty, greasy shop floor. My first thought was, ‘The hole in my stomach will close up very soon if I don’t do something quick.’ My second was whether I should clean off the dirty tube before reinserting it. The next question was how to hold the tube in place while driving ten miles to the hospital. So I looked around for some duct tape. ‘You know how hard it is to handle with two hands? Try holding in your G-tube and the roll of tape with one hand, and tearing off a piece with your other!’ Eventually I taped the tube to my stomach skin, excused myself, and drove to the hospital.

 

The fiasco continued there when, after a considerable wait, the nurse informed me that the G-tubes had been packed for a move to the new hospital location. Then inside the operating room, the doctor asked, ‘What’s the best way to do this?’ It was clear he hadn’t done the procedure before. I suggested I lay on my back to keep the fluids from spewing out all over the place. ‘Good idea.’ So, he took the duct tape off, removed the old tube and inserted the temporary replacement: a urinary catheter that was four times as long as my G-tube. Keeping my wits, I quipped, ‘It looks like it is designed to fit Wilt Chamberlain!’”

 

Shawn Boulette, RN, BSN, was thirteen when he first went on TPN 27 years ago. He discussed how teens can successfully transition to independence. Get the child involved in their own care; give them an active role. He feels that “the less you expect from the consumer, the less they will expect from themselves.” Getting the child involved also gives them a sense of control. Set goals like going to college and moving out of their parent’s home. He doesn’t believe in setting time frames because the consumer may be discouraged if there are setbacks. Shawn feels that if you change your perception, you can change your reality. Have a positive attitude and turn negatives into positives. He also feels it is important to have a very good home care provider. A good home care company can help give the consumer a sense of control on a day-to-day basis, as well as when they travel.

 

Carol Pelissier had endometriosis at age nine and later developed a motility disorder that led to a total colectomy at age 37. She is on tube feeding and morphine, and had to stop working as a medical assistant. She believes in shifting your thinking from yourself to other things. “Focus on the things you can do,” she advises, “not the things you can’t.”

 

Roy George-Thiemann is 17 and has short gut secondary to Hirschsprung’s disease. He spoke about the challenges of being a teenager on TPN. He feels his mother’s terrific parenting skills were a big part of the reason he has dealt so well with his challenges. Roy has been on TPN since birth. When he first began school his mother educated the children and teachers about his medical condition and need for TPN. He played sports, (soccer and track) and is very involved in musical theatre. His mother, Madeline George-Thiemann shared how Roy likes to teach others and loves to play the piano and sing. Roy echoed that consumers need to find an outlet for their feelings.

more Calendar

5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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