Again: Remember deadline: January First… Get those videos in or pictures of you showing those muscles with tubes or devices you require to live (to proudly show and own those diseases). I REQUIRE: VIDEO (We only have a few and would appreciate more so it is more interesting), NAME, AGE, and PRIMARY DIAGNOSIS (not all of them) Sorry, it would be too long if we did that. But have fun with it. This extends to FAMILY members, caretakers, nurses, doctors, etc. So get at it! Enjoy!

Trouble getting a picture from two Ambers here. Try to identify yoursself and then do the NAME, AGE, Primary Diagnosis… I’ll use them in the video if I can get my pictures sorted. In the beginning my goal was different so those that sent in pictures first, didn’t know about the change. Thank you! And still looking for the owners of these ladies’ photos and the same required information.

* REMEMBER: send in videos of you showing muscles if you can. It will make a bigger impact if we can sprinkle in some of the videos within my straight photos.

* Also remember to include your caretakers or family/friends also doing the strong man pose because we all know that without them, everything would be a million times more difficult. I already included my brother strong man pose with my nephew on his shoulders, also posing 🙂 So get creative and have fun! Show the world that despite possibly life threatening diseases, you are strong and will never stop swimming *

Thank you so much to those who have already submitted. I’m tinkering with songs and templates for the video to get our point across. If you have any uplifting songs you like – toss them out to me. I love taking suggestions.

Also, sorry if there are repeats in there or you have already updated it via PMs. I’ve made the changes on FB but not my files. Remind me again if you could so I can make the necessary changes. I’ve been getting a flood of responses and that’s so amazing. But I need to find a way to organize these posts a little better.

*** REMEMBER – due date for submissions is January 31st. ***


Jennifer Cockburn

Ashley Lynn




Age 3



Shelly GP

Sarah Cox



Michelle Sleczka

Mel Halliday (2)



PM me them – include *Name *Diagnosis (keep it short to names only and only the ones that are suspected to be connected to GP) *Maybe a sentence or two of what you enjoy doing, despite lines, backpacks and tubes.

THANK YOU to those who have already submitted photos; I haven’t forgotten about you! But, even with the ones I have, I can’t start even constructing this video for you guys without the proper photos or number of photos. Even if you are inpatient, and have the strength, get a Zaching Pose going on. Show those muscles!

Love you all and happy tummy nights. May tomorrow be better, brighter and more full of potential than today. Just keep swimming! A special amazing friend will model what I’m looking for:


And to this guy guy who started it all, and an inspiration to me and millions of others:


I am sorry to have not gotten to them. I’ve been using Facebook to update, mostly and have put the site on the backburner as I have been going through some things (some health related). I will try to get to you. I am not ignoring you and every comment made or message sent is greatly appreciated. Thank you for taking that time. I hope this evening finds you in little pain and strength and energy. Keep the fight and happy tummy night!

Rest in peace sweet girl. We love you always and forever.

Rest in peace sweet girl. We love you always and forever.

Hugs, hugs, and more hugs. Keep in touch.

Hugs, hugs, and more hugs. Keep in touch.

Few minutes off all IV lines

Few minutes off all IV lines

This one took me a few months to make. I wanted to make sure it had more information in it to show what everyone might experience when diagnosed with this horribly under-diagnosed disease that has no support from the medical field or awareness. It is easier to say that these symptoms we experience is “all in our heads,” than for them to admit that they simply don’t know or understand the disease. All we want from them is for them to say that, and for them to offer full support by devoting time to look into this disease. It is a difficult one to understand, that is for sure. But, it can be understood. Even we know sometimes it is a neurological problem (often accompanied by other diseases such as neurogenic bladder, CIP and the inability to process and breakdown nutrients), a physical problem (the nerve to the stomach that tells it to contract is damaged), or is a symptom of diabetes (type I and II). Beyond that, we don’t know nor are we acknowledged. Sometimes we are ignored altogether. This is why I made this particular video. I hope it helps patients feel comforted; that they are not alone and that maybe physicians or other medical personnel can see first-hand what we go through on a daily basis, not just what they see in an office visit or hospital stay.

Thank you to those who contributed their photos to this project. Take the video and share it with everyone you know. Awareness is key. Keep the fight!