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

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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.

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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.

Jamie

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!

Ari

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!

* 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.

Fudōshin!

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!

This year, in May of 2012 my last grand-mal seizure put me in the hospital for observation with a VEEG until I had another seizure. This was not going to be exciting and it wasn’t. Most of my seizures were weeks to months apart and I was afraid that either I would leave with no seizure or have one and get a diagnosis I wasn’t prepared for. Turns out, I had another grand-mal seizure after they slowly reduced my ativan to nothing and from that, they diagnosed generalized Epilepsy and started medication treatment immediately. After a few days on the medication I was released with strict rules to follow regarding this medication. During my stay and after the seizure, however, I complained about the worst back pain I had ever experienced. Everyone shrugged it off telling me, “this is not why you are here. You are here for seizures, not chronic pain.” Um…this is not chronic pain, this is ACUTE pain. You know the kind that makes you want to scream every time you breathe, move, stand up (nearly impossible) or sit down. I waited a day just for a doctor to prescribe a heating pad. Really? So they made me think it was all in my head. If anything it was a muscle pain, like a charlie horse in my back from my intense grand-mal seizure.

After 5 weeks of my moaning and complaining and very unusal appearance to my husband, he took me to the ER because my less-than-helpful PCP would not schedule me for an emergency appointment (I know they exist). So I had no other choice; I went to the ER. They were skeptical too. “Are you pregnant?” they would ask. Uh, not a chance in … was I pregnant. “Are you willing to provide a urine sample?” If it gets you off my back about it, yes! After 2 and a half hours of lying there crying in pain the doctor comes in with my films and simply stated, “Well, I know why you are in pain.” Thank you, thank you, thank you, thank you – more vindication for me, not in my head. He proceeds to show me my x-ray of my spine and wouldn’t you know it, a completely crushed L1 vertebrae. We hypothesized this happened during my seizure in May and that the muscles contractions during it pulled that bone apart. Painful? Yes…there are no numbers on their scale of uselessness to explain this level to them. “Those injuries hurt really badly.” Hey thanks, I know, what are YOU going to do about it? Well, the position of the break is one where we can do nothing. I consulted a surgeon and he said he could do nothing to help other than offer a body brace (something like a body cast but could be removed when lying down). Out of the humanity in his heart he offered IV Dilaudid which helped a TON. Nothing at home would touch the pain because what I had at home I was already using to make my already present chronic pain tolerable. I attempted to go in for pain help a week later as it was preventing me from sleeping and they gave nothing but IV torodol and benedryl. I’m thankful for that much but would have rather had something for my pain. Instead I got a muscle relaxant and medication for my progressing UTI that popped up that day.

So, I’m struggling. Trying to take it one day at a time, one hour at a time and living for good days that seem to be getting further and further apart. I often wonder if anyone is listening to me and believing in what I am saying when I express pain through teary eyes. With all my medical issues, do I really look like some drug dealer off the street? I have an appointment with one of the most amazing pain specialists in the state on the first of August and hope he can provide me with something else as I know the limits of a PCP or any other specialist are heavy due to the messed up Washington State laws regarding narcotics, as if they have some right to determine who is really in pain and who is not. I’d like to break a few of their bones, give them the throw-up flu and infect their bladder and deny them pain medication and see how long they’d last. Certainly not as long. After tomorrow, I will be finding a new PCP and my wonderful friends on Facebook have pointed me in the direction of the University of Washington. My geneticist is there, so I figured I would give it a shot. I really can’t do any worse than I have with my current doctor.

Sorry if this post is a bit negative. I am very much dreading my appointment with my PCP tomorrow. I hope she has her crap together because so far, she hasn’t. No return on my phone calls or e-mails unless she has something negative to say or something that would make me work harder than is necessary to get something accomplished. Sometimes I feel like giving up but it is people like my GI (Dr. David Patterson) who keep me going forward. He actually called me and asked me to come in. Feeling as if I had done something wrong, like you feel when your father uses your middle name and calls you into his office (you KNOW it won’t be good), but he assured me it was merely a check-up and to review my medications. That is the first time I had an appointment scheduled not by me, but my doctor. It is apparent he is thinking about me and worried/wondering how I am doing. For that I am grateful. In this whirlwind of life I lead there are a few constants, my husband and family, and my GI doctor (who I have been with for at least three years).

Anyway, it is late and my appointment is early. Good night everyone and good luck.

~ Happy Tummy Days!

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