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Gutsy Gals with Good-for-nothing Guts
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Gutsy Gals with Good-for-nothing Guts

 

Lynda Bosworth, Kathryn Bundy, Jana Daigle, and Emma Tillman

In late August of 2015, the four of us gathered in Silver City, New Mexico. Lynda came from Tucson, Arizona; Kathryn from Los Angeles, California; Jana from Beaumont, Texas; and Emma from Memphis, Tennessee. We had become acquainted with one another through various connections made via Oley, the National Organization for Rare Disease (NORD), and our home parenteral nutrition (HPN) infusion company. While our ages span from thirty to seventy-three years old, we found that our experiences living on HPN sealed the generation gap.

 

Judgment-free Zone

In some ways this trip was like camp! Our days at HPN Camp in Silver City were filled with many adventures, such as: shopping, exploring the town, visiting the Gila Cliff Dwellings, jogging in the mountains, watching movies, making crafts, cooking, and socializing with each other. While all of these activities sound typical of any “girls’ trip,” this group was unique. In all of our activities, there was a strong emphasis on nutrition, hydration, and overall health.

 

Oftentimes vacations with our families and friends will revolve around food. That was not the case with this trip. We typically ate one meal together daily and other than that, everyone just ate when they were hungry. There was absolutely no judgment or pressure regarding how much or how little we ate. We discussed topics like our favorite oral rehydration solution, foods that work and don’t work for us, and our crazy cravings like pickle juice and other salty foods.

         
         
         
        Kathryn, Emma, and Jana hooking up for their nightly HPN.  
       

 

In the evenings, three of us hooked-up to our HPN and for once the daily routine of hooking-up seemed like something the “cool kids” were doing. Lynda, who has been able to wean off of HPN due to Gattex® (teduglutide [rDNA origin]), was almost jealous that she wasn’t hooking up to her HPN like the rest of us!

 

We compared HPN formulas and educated each other about the significance of each ingredient. We discussed why it made sense for us to have various amounts of each ingredient based on our individual disease processes, and our input and output. We shared tips about the best supplies and other helpful hints about our individual HPN routine. Jana even purchased a fun new HPN backpack while on the trip!

 

Value of Common Ground

It is impossible to capture the impact of this experience in words. The socialization and support of this group has been priceless. Although we all came to need HPN due to different circumstances, we all have a very common ground in that we are all striving to live life to its fullest while coping with a chronic illness and all of the challenges that that entails.

 

Typically, in our other friend groups we try to downplay the impact of our illness to avoid sounding overly dramatic. In this group anything and everything was fair game for discussion. We would get really raw discussing the physical, psychological, and emotional struggles we face daily. Being able to be honest and real with someone else that gets it is huge!

 

We all respect and admire each other so much. Many times during the week one of us would comment about how amazed we were at the tenacity of the others. Although all of us have bad days, our affiliation with one another in this amazing group of strong women inspires us each to push through and get on with life despite the many challenges we face.

 

Forming Connections

We encourage Oley members to reach out to other HPN or home enteral nutrition (HEN) consumers and start groups of your own. Some ways that you can connect to others include contacting your local Oley Ambassadors, attending Oley regional and national meetings, attending NORD meetings, and using online support groups such as Inspire and Facebook to connect to others with similar diagnoses and/or interests.


We hope you can join us at the Oley annual conference in July 2016 in Newport Beach, California (see registration and other details at www.oley.org). During the welcome reception (on Tuesday, July 5), we will lead an activity to help individuals connect with others with similar diagnoses, age, interests, and goals. Together we can support each other to live life to its fullest!

 

LifelineLetter, January/February 2016

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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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