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!

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!

I just wanted to share something with everyone. Most people don’t know that I live in constant pain, so much pain that I’m not even aware of it at times (but it shows itself in other ways like increased heart rate). I don’t tell anyone about this pain anymore. They know the story and roll their eyes so I’ve put on a smile, and go about my day. Fake most of the time but sometimes real. What frustrates me most is that the ones who are supposed to help me, believe me and understand me are the ones who deny me help and call me crazy. “If you were in that much pain all the time you’d be screaming and unable to do anything.” Not true, sir. As any ER doc would fail to understand is that those with chronic illnesses cannot simply cry out every time they feel pain, lay down every time they feel tired, nauseated or upset. What would life be? The difference between a real chronic sufferer and a fake one is the smile, compassion and understanding.

Why are there all these message boards and forums created by patients? Because we want to forget our problems, for they cannot be solved (for lack of trying by the medical field or for they truly cannot be helped – hospice), and try to help others through their problems, their reaction to the truth of their disease and just to be there for them when they need someone to talk to because no one else wants to listen. There is a definite difference between want and has to, and that was intentional. Most doctors have to listen, but they aren’t really listening because if they were really listening, understanding and believing, they wouldn’t have to listen, they would want to listen. The boards have been very helpful to me and the people visiting my site, e-mailing me and leaving messages there have been amazing. I could not say more about them. No one knows them like I do. The chronic sufferer.

The pain medication I receive acts only to take the edge off my pain. It is enough to allow me to move around as opposed to being in bed all day. However, most people make the false assumption that activity means absence of pain. It couldn’t be further from the truth. When you live with pain for so long, you build up a tolerance to it. I’ve even had this justified by my gynecological oncologist, who said that I was in a considerable amount of pain of which I was unaware.

This was mostly tested when, during my VEEG (testing for epilepsy through in-patient EEG…NOT FUN). They were able to reproduce my grand-mal seizure by slowly reducing my ativan (that I have taken for years for sleep and anxiety) to nothing. Bam, seizure, and a very bad one at that. I don’t know if they did what you should NEVER do, and held me down but all I DO know is that when I came to and asked about it, my back was in excruciating pain way above a 10 on the pain scale of uselessness. They refused to listen or provide proper pain relief medication. They kept telling me that wasn’t what I was here for (referring to my chronic pain). I wasn’t talking about my chronic pain but rather acute pain in my back that made it hurt even to breathe. I even had to wait for them to get a prescription from my neurologist for a HEATING PAD! What is that about?!

They kept me off my sleeping medications but instead fed me Ritalin after 9pm to sleep deprive me as well and once I had my seizure, I was allowed back on them and sleep I did. They immediately diagnosed general epilepsy. My epilepsy neurologist brought up the idea of getting tested for mitochondrial disease. It was something I have been considered for quite some time but with the recent events, it made the diagnosis very plausible. I have an appointment with one of the best geneticists in the state, thanks to a friend I found on Facebook for recommending her. My seizure was strong enough in the hospital to crush the L1 vertebra in my back. If you know where this is, you know it is one of the worst places possible. It hurts to breathe, let alone do anything else. I was given a brace to use if I’m not lying down but truth be told, I am laying down a LOT. I am not a fan. If taking away driving for 6 months wasn’t enough, I can no longer even preform simple household chores. The burden on my husband continues to grow but I hope that once my back heals properly, I can return the favor in some way.

I guess I’m not feeling all that well so it is hard to make or see the positives. This weekend my husband and I are going to the Seattle sympohy to watch them play Disney music. That should be fun and it is in the middle of the day so I should still be relatively feeling better than I do by the time evening rolls around. It is my first REAL outing in quite some time. Just to be out is a treat in itself. Maybe afterwards we could catch some dinner. I don’t eat but I completely enjoy the company. In any case, I’ve rambled on and most of it doesn’t make sense but I thought I would update on the VEEG and upcoming appointments and tests. My issues with my current PCP are for another day. If I commented on it now, I would 100% guarantee things would be said that I would most definitely regret. Let’s just say, I’m on the look for a new one and many of my friends have led me to the University of Washington (where my geneticist is, coicidentally), so I figure I would give it a try. Anyone is better than who I have now.

Thank you for all your support, prayers, thoughts and love through all my difficult times. I read them all and respond when I can. They mean the world to me and you are why I continue to keep my site active. To promote awareness and to give a place to those who may feel alone with a diagnosis that is poorly understood, not well documented, and contains patients who can be countries apart. Should you ever need a listening ear, encourage, or help, I am here for you all <3

Thank you all for everything and I hope you are having a good night watching the Olympic summer trials (my favorite thing to do aside from the real ones held this year in London!)

– Kirby

For a tube feeder, like myself, a backpack is a constant companion. This is especially true when a tube feeder is either a day feeder or feeds longer than just nights. It is important to find a backpack that is comfortable and has the capacity required for the tube feeder’s needs. Most backpacks also require some modification to work well. These are the things I looked for when I went shopping for a new backpack after giving up on the one supplied to me:

  • Appearance: It needed to look good
  • Weight: It needed to be light when empty because I knew my supplies alone were heavy enough
  • Hydration Capacity: It needed to be able to hold my TPN (2L) plus more in case I needed to increase it down the road
  • Overall Capacity: I didn’t want it to be too big but big enough to hold my everyday things so I wouldn’t need an extra bag to carry around. This backpack would become my purse as well.
  • Hooks and Holes: It needed to have a way to hold up my TPN bag so that it didn’t pinch at the bottom and it also needed a way for the tube to connect to the pump which would be in a different chamber of the backpack. It also had to have a way for the tube to exit the backpack in a reasonable spot where I could connect it to my port without it being too awkward

  • After much searching both on the internet and through stores, I finally found a backpack that fit all my needs! This backpack is by far the best I’ve come across. It is super light, the lightest hydration pack on the market so far, is very comfortable to wear (even 24/7), has a lot of room to expand if I need more space and has easy to access side pockets that can be secured with straps. But what sold me was the hole that connected the hydration chamber to the other area where I’d have my pump. The hole is where my tube would go. Not only that but it also had a Velcro strap at the top to hang my TPN feeding bag so it doesn’t drop down to the bottom of the bag. These two features are rarely found in any backpack and I know also the hole connecting the two backpack compartments does not exist in any backpack I’ve ever seen before. Those features are typically ones feeders have to do themselves. I’m not very handy and I was determined to find a backpack that required no adjustments on my part to make it work. This backpack, the one I linked above, is the only one I found. I got it in black though. Like I said, it has to look good too! Here are some pictures I took of mine:

    Stats Breakdown:
    Weight: 530g (1/3 lbs)
    Volume: 20L (1220 cubic inches)
    Size: 19 / 10 / 7.1 (H x W x D) inches
    48 / 26 / 18 (H x W x D) cm
    Material: HexLite 210 / Deuter-Ripstop 210
    * Removable waist and chest belts *

    What’s in my Backpack?

    I carry with me:

  • A vial of zofran
  • Syringes with needles
  • Flushes (both saline and heparin)
  • Imitrex IM
  • Keys, sunglasses (for the random day the sun comes out), wallet, phone
  • Bag of dog treats when my service dog is out with me
  • iPad
  • Those are just my everyday things. Of course I adjust or add to the list depending on where I’m going or how long I’ll be away. That list will always include my TPN bag (2L of fluid) and my brick of a pump. Everyone is different but this bag is sure to benefit everyone, not just TPN feeders, but I’m pretty sure it will work for HEN feeders as well. The system is the same. I’ve tried and looked at many others. This is my bag and I highly recommend it!

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