- Meet Consumers/Patients
|Gutsy Gals with Good-for-nothing Guts|
Gutsy Gals with Good-for-nothing Guts
Lynda Bosworth, Kathryn Bundy, Jana Daigle, and Emma Tillman
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.
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.
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.
LifelineLetter, January/February 2016