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.

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!

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

I’ll be updating this blog shortly as many things have happened and I’m still trying to wrap my head around them and find doctors who are qualified to make the correct diagnosis that may explain why all my organ systems seem to be affected. For now, I have updated the GP INFO page with a new introduction to the life someone with GP/CIP or any digestive disorder lives with day-to-day. It is lengthy but well worth the read if you are truly curious. It will help you try to understand but we all know that until it happens to you, complete understanding will never be possible. We, as a group, would not wish that on our worst enemy. I hope everyone is having good tummy days and are with doctors who really do care for them and do everything in their power to make them well, even if it means sending them to someone else for proper diagnosis as it might be beyond their scope of knowledge and understanding.

Good luck to all of you. I think of you often and you are all in my hearts and keep me going. You really are my inspiration for putting my story out to the world for it is by these words, patients become stronger and wiser in their disease, a disease that is so very much misunderstood and often underestimated and even mocked. We have to ban together to make ourselves heard and this is one way I think it can be done. Sharing stories helps us find ways to help ourselves in ways we never thought of before. Continue to read, research, share and post so newly diagnosed or those diagnosed for years but had no one to talk to can find peace in the knowledge that they aren’t crazy; this disease and those it cause are real and sometimes it is us, the patients, that are the only ways to help progress in the positive direction in terms of a cure or even treatment of symptoms. I hope you are all doing well and keeping your tummy troubles at bay as the summer quickly approaches. I hope you can enjoy it with family and friends without the extra burden of this and other diseases. I love you all and think of you often. Keep fighting. Our battle has not yet been won.

I have other news and a new diagnosis, one that some who have friended me on Facebook already know of, but I will explain it in greater detail here and what it all means when it isn’t so late. For now I will leave with a picture. Good night everyone. Rest well! <3

She knew I needed her most – even if I was completely knocked out after three days of no sleep thanks to the Ritalin they made me take after 9:00pm each night…She stayed by my side the whole time. Best dog in the world. My princess.

Love you always and forever,
Kirby

People do not cry because they are weak, but because they have been strong for too long.