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!

Zaching with strength through chronic illness


He has a fanpage but – it is a bit congested right now. Here is his story and why I am always Zaching.

Zaching Through Cancer

Zaching 3.10.14

Butterflies are the “unofficial” representation of the death of a loved one – sort of like angels. People die and shed the pain and other problems to become a butterfly – just like the real ones do. Especially those of children. They become our protectors, offering comfort and strength when we need it most. They are our cheerleaders and help guide us through our lives.

I have been particularly close to a few kiddos. I follow their stories through Facebook. They use fanpages to ask for help, guidance, prayers and to simply share their story and increase awareness.

One was Eli.

Eli 4.28.13

This kid has gone through more things than 100 would in a single lifetime. He was the sweetest kid and I was there up until the early morning constantly refreshing my page for updates from the family when Eli unexpectedly went septic and in the end, it was too much. Stunned. No words. I always remember him. They called him tiny man. He is one of my butterflies.

Zach is now another one. My brother passed early; I was only one at the time, but I never leave him out. Another is Karen. She was my best friend I lost just a few weeks ago. If you remember. I’ve made so many videos; never thought I’d be making her final one to be shown at her celebration of life.

My last butterfly is my cousin. She died in a rollover accident almost taking her child with her. Luckily they were able to do an emergency c-section and get the baby out before my cousin died. The baby was far from ready to come, but she pulled through. I like to remember them. Always.


They teach us things we could never learn on our own and I feel sorry for those who aren’t exposed to people like them; “them” being those who are handicapped, chronically sick, with lives full of obstacles. It is through them, that we learn about ourselves and have the chance to make ourselves better.

I wanted to show you my butterflies that just came in. Nearly died putting them up. Victor didn’t like to hear that. Luckily I made it through yesterday with no signs of internal bleeding lol. Seriously, his chair broke my fall. It is a lot longer of a fall than I remember!

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Pink – my cousin, Purple – Eli, Blue – my brother, Green – Zach, Yellow (she’s always been yellow) – Karen.

Of course I can’t forget the ones still fighting. There are so many and all pure angels. My buddy Ari has had it rough with open heart surgeries, including two surgeries in utero. He has another coming up in May as the valve isn’t quite right. You can read up about his crazy journey here: Echo of Hope. He’s a little buddy of mine I like to watch grow up. He’s my internet nephew and a handsome one at that!


These kids and their families are heroes. Every day is a battle but that’s life. I just wanted to share a little bit of the amazing people I fight with. If they can do it, I can do it. Our battles may be different and our ages may be years apart, but we fight together and for that, we are stronger.

Hey everyone!

I am adding a FAQ page and need your help. If you’d like to participate, this is what I need: a) generalized (not specific to your situation) questions about any treatment, surgery, medication, or procedure (i.e., can you swim with a feeding tube? how do you shower with a PICC line?) b) questions asked by family (giving them easy access to answers they may have now or in the future) c) questions regarding participation in activities while undergoing treatment (ex: What do I do when my friends want to go out to eat?) and d) questions about research or other webpages that may offer additional information (to always have a list of websites that also provide specific information). Please send questions and comments either via e-mail or in a comment below.

Thank you in advance!

Happy tummy days!

I’m sorry I haven’t been around to answer messages and requests either through here or my e-mail. I have had a very difficult year that includes at least three episodes of sepsis and septic shock with hospitalizations and stays in the ICU. Not to mention many other surgeries, procedures and one emergency surgery which happened early April. But I’m here now and between surgeries. I’m hoping to post a more detailed update as to what has gone on with me and more write-ups for the procedures I have had to go through. Some, like the c-tube failure and majorly successful ileostomy, might be of some help to those who have been messaging me or those new to this site and are looking for such information. Thank you for your patience and concerns. I’ll be doing my best to update where appropriate.

Happier tummy days to you all!

* Copied from the blog of Ari*

Destiny be warned. Your grip may be strong, your judgment severe, but we resist you. We have the strength.

Who are we? The broken children. The little warriors.

Alone you may have defeated us. You’ve fought this battle and won since the dawn of time. You are powerful, and, yes, we are small.

It may seem sometimes that you are too strong. That the die is cast. That the ending has already been written.

Not true. We resist.

But not alone. Were it not for the warrior nurse, the guardian, you may have defeated us.

When we are drained the warrior renews our strength. She empties her well to fill ours, and we raise our banners anew.

When we are afraid—terrified—so frightened we may lay down our fight, she pours in us her bravery, absorbing our fear and restoring our snarl.

When in the midst of the battle’s darkest hours our skins get tough and the walls around our hearts grow taller, she steels herself to give us laughter. She swallows our pain to give us joy.

When Kayla down the hall falls after her mighty battle, even the warrior is shaken.

Warrior, we need you still. The fight continues.


She does not fall. She returns to her post. Guardian in the night.

Destiny be warned. The warrior will not stand down.

So we, the broken children, the little warriors, will defeat you.

My Nurses!