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

Friday was an unfortunate day as it ended in me having to go to the ER, once again, for a grand-mal seizure. Tonic–clonic seizures (formerly known as grand mal seizures or gran mal seizures) are a type of generalized seizure that affects the entire brain (see Wikipedia for more information). At first it was thought, from my first one, to be medication induced, resulting from lack of Ativan in my system. But this seizure was much different in that I had just taken all my medication prior to my seizure, and while running low on Ativan, I was not out of Ativan. The only change in medication was when I went to the ER earlier that day (yes, I ended up back in the same ER following my seizure within 24 hours of my initial visit this week).

I find it difficult to understand how an RN can “forget” that Imitrex (Sumatriptan) is only found in INJECTION form, not IV form for one very important reason: it can stop the heart. I have survived 3-4 IV injected Imitrex situations out of pure luck but this one was not to be without problems. It could have very well lowered my seizure threshhold, which apparently isn’t very high to begin with due to my chronic problems as well as the vast amount of maintenance medications I am on, to the point where my other medications (oxycodone or whatever) were able to trigger the seizure when normally, they don’t.

This one was different, also, in the fact that I was alone in the room (kitchen) preparing my TPN bag after taking my nighttime medications, when it happened. I was standing instead of sitting in my chair, like I was the first time, which caused way more issues. From the pain and swelling, I figure during the seizure I hit my chin on the way down and ricocheted off the refrigerator a few times with my head and then finally landed on the floor. Of course the noise was loud enough to call my husband from clear across, on the other side of the house. Because we told him how well he did handling my last seizure, not 3 months ago, he considers himself an expert (I would never wish anyone an expert on handling seizures!) and did not feel it necessary to alert the paramedics with a call to 911, like he did last time. Too bad too; I wouldn’t mind saying hi to my neighborhood paramedics. They are great guys!

He simply held me up so as not to hit my head on the hard floor again, turned me on my side to allow fluid to come out of my mouth, and then waited for me to finish shaking. Afterwards we headed to my favorite ER and had a CT scan (I’m not allowed MRIs because of my neurostimulator and portacath).

I was not given a blood test; in fact, they didn’t give me anything by IV while there. I should have received a blood test. As if I could not make it easier on them, I have an accessed portacath from which blood flows freely when needed (I’m a hard stick now that my veins have shrunk; I make it a point to have them ALWAYS draw blood and give fluid through it). I only worry about my blood tests because I have started to develop petechiae under my eyes. I’ve also been running low blood counts for the past month. If it was just under one eye, I could attribute it to the fall from my seizure, but I have them under both eyes and it is starting to spread from out under my eye to my ears and other areas on my face. Hopefully it will start to heal and stop spreading as that might indicate a bigger underlying disease. I’m not entirely ready for that quite yet (as if you can ever be ready…).

So that is what I got to do this weekend. I wanted to make it a better weekend than laying around trying to recover the energy lost during the seizure, so we headed out to the tulip festival. I’ll wrap up this update with my favorite pictures from the day. I hope you are all enjoying your weekend and are having lots of happy tummy days~


These people were only a few of the ones that asked to take pictures with Ellie and I. I found the question odd, as I would never go up to anyone else and ask for a picture with their dog, but to each their own!


“When things go wrong as they sometimes will;
When the road you’re trudging seems all uphill;
When the funds are low, and the debts are high
And you want to smile, but have to sigh;
When care is pressing you down a bit-
Rest if you must, but do not quit.
Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you can never tell how close you are
It may be near when it seems so far;
So stick to the fight when you’re hardest hit-
It’s when things go wrong that you must not quit.”
~ Unknown

Today has been filled with much frustration. I woke up to my own screams of pain and found out why I was in pain (not from the continuous migraine I seem to be experiencing and have for the past few days). I am in the middle of a bladder infection which proved to be resistant to the medication I was on for the past THREE days and when you couple that with a neurogenic bladder you get a bed wetting situation. Luckily the pain of urination brought me out of sleep early enough to leave only my clothing needing washing. I was then later made aware that my medication was changed and we are hoping this will finally start controlling the bacteria. Based on my last infection, I am on guard in case this bacteria translocates to my kidneys or once again goes septic by infiltrating my blood. Until the bacteria is gone, this will remain a very big and scary possibility. Not only do I have that as a risk of infection (uh, already infected but contained within the bladder) but my surgical wound where they placed my portacath is still continuing to drain. NONE of my other ports or piccs had pockets of fluid that required draining but this one, for whatever reason, is draining. Not a little bit either, but a lot. Enough for every access to require pressure to get it all out. Fact is, my body will just replace it with more fluid; fluid that when accessed is trapped in that same pocket my port is in and become infected.

I had my portacath checked on Monday (4/2/12) to make sure it wasn’t the port itself, that was leaking but after a five hour stay at the hospital, blood cultures and hours of Facebook later, we determined the port is working perfectly and hasn’t moved out of place in any way. So now we just associate the leakage/drainage to the surgery itself. I might have mentioned before but the recent port placement was harder on my body than usual. It has been swollen and bruised and tender since first placed where none of my other ports swelled or even bruised. But with this one you can see it bruising so badly that you can follow the catheter right up my neck and back down again.

With these risks, I guess I will box myself up at home and hope that no infection comes to me because I’m a walking hotel for bacteria right now.

This isn’t the only thing that has me frustrated though. I don’t often get frustrated at tests or the consequences thereof, but what has me frustrated is the stuff that I can’t do right now. I’m still recovering strength, stamina and energy from my brush with death and because of this, I can’t do what I want to do, I can’t do what I need to do and I can’t do what I will want to do in the near future. It is STILL too cold for ME to go outside and walk around. I still require a lot of sleep or I end up cranky and make posts like this. I can’t do much outside the house or I get sick from exhaustion and for whatever reason, my body’s sleep cycle is all wrong. I blame the hospital visits for that. I do what I can at and through the computer. Connecting with friends, making phone calls for appointments or just to say hello, I snuggle with my Ellie and look forward to the few hours my husband is home from work for some real person interaction.

I know it will get better. I know I will get better. I won’t drop the diseases that I have already been diagnosed with but I will get my strength back, my energy back and maybe a little part of my life, dreams and inspirations back. I’m just frustrated with how long it is all taking. And I don’t think I’m the only one frustrated with how long it is taking. Maybe once the infection is gone I can feel less sick and crappy and start doing more but for now…nothing is looking too hot.

I don’t like ending posts on a negative note so let me find a good picture. I have employed Ellie as our transporter of things from upstairs to downstairs by linking it on her collar and calling her around the house. Need your hair gel and you are upstairs…no worries. Wish she could carry the space heaters up and down the stairs. Now that would be an invention.

I had to throw this one on too. A friend’s nursing school class went green for Gastroparesis. I was in the hospital that day but this really means a lot to us. Seeing support from those who do not suffer offer hope that someday, we will be recognized as we should be and a cure or more reliable form of treatment be found.

Saturday, February 11th, 2012, started off like any other day, but it was not to end like any other day and has forever changed me in ways I didn’t think possible. I wasn’t really feeling myself all day. With GP, who really does have a normal day? What is normal? I was still trying to figure out that very question when I became very abnormal. I have issues controlling my temperature so being insanely cold is really not that out of the ordinary. The uncontrollable and massive shaking attacks that happened that night before bed probably would have been my first clue that something was horribly wrong. Again, what is normal and what requires a doctor appointment? I bundle myself in every single blanket, haul the personal space heater upstairs to the bedroom, set to high and also sleep on a heating pad set to high and attempt to sleep off whatever it was that was making me feel like crap.

The night was very surreal. I would wake up but feel very weird, delusional and disconnected. It was 3:00am during one of these awake moments that my loving husband checks on me. He realizes right away that I was burning up. I’m not entirely responsive but adamant about NOT going to the ER for what is probably just the flu, especially at this time in the morning of February 12, 2012. He is not happy about it either but takes the stand that if something needs to be done, just get it done and over with. Little did he know that many somethings needed doing and it was going to be awhile before they’d be over with. He runs downstairs to get the trusty SpongeBob thermometer and finds out that it read a very convincing 103.6 (both times). That thermometer never works quite right and if it was reading a temperature, then more than likely, the actual temperature was much higher. He says to me that we have to go to the hospital right now. Ugh, I roll over and refuse. My energy at this point is rather pathetic so it doesn’t take much to convince me to grab what I could and get in the car for a ride over to the Redmond ER. *Side note: we will never again be visiting the Evergreen Hospital due to their enormously high error rate when it came to diagnosing and treating patients. So we will take the extra 15 minutes just to be in the Swedish network with doctors we know and trust.*

As I walk in bundled in my favorite blanket, half-awake and probably looking a little like death, the receptionist, upon seeing me, simply says, “Oh no.” Not exactly the words you want to hear and definitely not something that conveys any sort of positive attitude towards this downhill situation. At 3:00am the ER is not all that full and we are seen immediately, stats taken, blood taken, IVs started and the decision is made, though not as hastily as I would have thought they would be, given how obvious it is that I was septic from an infection in my port, to transport me via ambulance (yay, my fourth one) to my favorite hospital, Swedish Issaquah. My temperature continues to rise and my self-awareness continues to decline. I vaguely remember the ride to the hospital, my arrival to the ICU and the number of tubes they placed (urinary catheter, NG tube for suction – my stomach began to fill with fluid at a rate that had doctors overly concerned that I may aspirate that fluid along with it forcing me to use more than necessary energy just to breathe, breathing tubes and many PIVs for fluids, pain medication, broad spectrum antibiotics, etc.).

It would be three or four days before they would get a correct identification on the infection quickly taking my life, and for the antibiotic to bring me back from an almost coma-like state. I remember during the first few days, that I was not breathing well. I was sleeping but in my sleep I hear the nurses telling me to take a breath. For me, at the time, breathing and not breathing were the same. There was no urge to breathe and because of that, I would stop breathing periodically requiring nurses in my room 24/7 just to tell me to breathe. I was in such bad shape that the doctors discussed placing me on life-support. Life-support…in one single night I went from one extreme to the other. I was very unaware of how bad things were, who all was involved, though I do remember Dr. Patterson being there – love his accent, so I never experienced fear, the fear I’d lose my life after so many years I spent fighting for it.

The fog lifted a few days after my mom arrived. She jumped on a plane that same day Victor called her and informed her that I was not doing well. From his voice she could tell things were desperate. I will be forever grateful to have had her there with me. She fought to get me the things I needed. It was the first time I had someone else in my room with me all day. None of my family lives here and Victor has to work. I think it was Friday of that week that I began to stabilize. Well, they had gotten me on the right antibiotic and my temperature lowered to normal for the night. Waking up was a different story. I had begun to spike another high fever, my O2 stats were dropping as my heart rate escalated above 170. I was shaking from pain and fear. NOT ONE NURSE OR DOCTOR responded to my help button. I pressed it several times. Each time I’d get someone talking to me, “OK, I’ll send your nurse in…” and then another 15 minutes go by, “OK, I’ll send your nurse in…” 30 minutes go by and I’m getting worse. Scared to death I’d die alone. It was too early for my mother and husband to be by and my doctors were not yet doing their rounds. It was a half-hour after nurses changed shifts so I know they were around. But they were not by me. I desperately called people just to talk to someone, anyone so I wouldn’t be alone should I die. My husband’s phone is dead, my mom doesn’t answer, but my GI does. I’m in complete tears and hysterical by this moment and told him what is happening, he asks, “NO ONE is in your room right now?” Nope, not a soul. He told me he’d call the hospital. At that point, while waiting for Dr. Patterson to shape up the nurses (Hello, I am in the ICU – why are you all taking so long in the first place!), I called my dad. He is at home because of the flu and wouldn’t be allowed in the room anyway, even if he had made the plane trip with my mother. I told him what had happened and how scared I was and that I didn’t want to be alone. I wanted to talk to someone. He couldn’t handle it. He told me that everything was going to be fine and in that, I found enough peace to end the conversation with him as it seemed to be entirely too much for him to handle, being so far away. I took my camera and made a short video for insurance purposes to prove a severe lack of ANYONE in my room or even at the nurses station which I seemed to have a straight shot of (because those darn nurses NEVER close the darn doors!). It is slightly upsetting but I offer it here. NEVER let your ICU room be void of nurses if you are in shock. It really is common sense but for whatever reason, today, common sense failed them.

*Enter Nurse From Hell – AKA: Crystal* My husband, mother and service dog, Ellie, had already arrived to help calm me down but in strolls Crystal. For whatever reason, before she even spoke to me, she had some sort of resentment towards me. She had no business being a nurse, and an ICU nurse at that. To be a nurse requires feelings, sympathy, empathy and a general care for the well-being of any human that walks through your doors despite their shortcomings or mistakes. She possessed nothing of the sort.

As she walks in, she informs me that the previous x-rays they did last night of my abdomen (yay for paralytic ileus), my PICC line was noticed to be out of place, dangerously close to the apex of my heart (where one of the pacemakers is located and if tampered with could cause the heart to stop entirely), and they could not use it. She then stated that she would be placing another PIV to allow for fluids and medication while we waited on the PICC line nurses to assess and fix my line. Fine, do it – I am in clear need of morning medications (including the life-saving antibiotic) and fluids. Crystal notices Ellie quietly laying in the corner behind Victor’s chair. I’m watching Crystal as she places the WORST IV EVER.


How she managed to find that tiny little vein is beyond me. I can only attribute it to her skill and my clenched fist. Fact is, the vein is small and my veins are already notorious for blowing (infiltrating) and she thought she could run everything through that little PIV, including D10. D10 is basically TPN minus the lipids and a few other things. It is thin enough to be given through a PIV. However, even if it is thin, my vein is still too small to handle it and as soon as she runs the pump, I scream out in pain, crying and pleading her to stop the pump. Slowly she does so and I, not being ignorant in the area of IVs, TPN or the tubing, quickly clamp it off. She gives me the stink eye and tells me not to touch my lines. I tell her then to clamp it and flush it because it is currently burning through my tissues. Crystal simply says, “I’m just following the doctor’s orders.” I don’t care what she is doing, I’m the patient. She clamps the line and flushes it and continues to push through the rest of my medications, one including my pain medication. Before she leaves, she tries to be all stealth-like and flips on the D10 pump while I am distracted. Again the burning, stinging pain comes back. I turn to her and ask, “Did you just turn the D10 BACK ON?” She nods. I said, “well you best turn it off because the pain is making me want to chop off my hand.” “That’s a bit exaggerated,” she says. Oh no you didn’t. I reach over and clamp it myself and then demand she flush it before she leaves. And, she does…so forcefully I notice the pain returning. I yell at her, “not so hard!” “This is just as hard as when I pushed all the other medications,” she lied. By this time I’m hysterically crying AGAIN, in pain and shaking from her mere presence. This has my service dog all upset too, and rightfully so! She is there to protect me. The nurse finishes flushing and leaves the room.

My mother and husband do what they can to calm me down so as to not die from a heart rate that is way to high. The charge nurse comes in and informs me that my service dog needs to be removed from the hospital. He states that a service dog can be removed from a hospital if the presence of the dog makes his staff uncomfortable to the level that they cannot perform their work. He stated that a nurse has complained that my service dog, Ellie…

whose sole purpose in life is to be happy and share that happiness with others, showed her teeth and growled at Crystal. Ha, never heard such a load of crap before in my life! Clearly this is her way at getting back at me for doing um, nothing! I did nothing and now I have a problem and she goes along her merry way. Before the charge nurse leaves I tell him I want a new nurse. He says, “I’ll see what I can do.” “Um, no…you misunderstood me, GET me a new nurse,” I demanded. He leaves the room, Crystal comes in and informs me that I have a new nurse. But not before belittling me some more by addressing my mother with the schedule of doctors appointments and tests that will be run that day. I’m not 2, you can talk to ME. I AM THE PATIENT! I still have a write up to do for her. No need for other ICU patients to be tortured by an arrogant nurse who shouldn’t even be a nurse in the first place. She is totally on my list.

The rest of the stay was pretty normal. I was there from February 12th – February 25th. We had some issues with pain management and sleeping medications but overall, things went as they should. My doctor never fails to remind me how close to death I came during my first week there. I was delusional and very much not myself. He said that if I had come in any later, they would not have been able to help me. My husband and the doctors and nurses of the Swedish Issaquah ICU saved my life. On the day of my discharge it was snowing. It was beautiful and perfect. I went home on IV antibiotics that were delivered via drip for another week and a half. I was then to have more blood cultures done to make sure the antibiotic was successful in eradicating the infectious bacteria. It wouldn’t be until a month or more later that I would receive permission from my wonderful infectious disease doctors to have my port replaced. And I did.

The monkey is its protector. This port placement was unlike any other. It meant something to me, I beat the odds and toughed it out. Simply stated: I SURVIVED!

The weather has finally cooled down a bit and this has made my stomach and head happy. I got enough energy a few weeks ago to venture out and try to rock climb a bit. I like the challenge the TPN backpack adds. Climbing with a few extra pounds on your back and a tube hanging around makes me just that much stronger! Here are some pictures from my adventure. I haven’t been back since because my pain returned in full force, leaving me homebound.

I’ve been seeing a pain specialist in an effort to control my pain. We attempted first, with trigger point injections. I basically told him where my pain was focused and he injected numbing medicine into the area. It was unsuccessful. Our next plan is to do a TAP nerve block. It will be done using ultrasound as a guide and I’m sedated for the procedure. Following the procedure, we will either attempt a celiac plexus nerve block using flouroscopy or go straight to a spinal cord stimulator. I’m hoping we can control the pain with just that last procedure but if it doesn’t work, I’ll end up with a pain pump. Both my doctor and I agree that a pain pump would be the last option as we are trying to find ways to get off medication. A pain pump would get me off oral medication but still release pain medication into my system. The spinal cord stimulator wouldn’t use any medication. We will have to see after my first nerve block next week. I hope it goes well.

I also pulled out the pictures from my last EGD/sigmoidoscopy scope.

I hope you are all having happy tummy days and enjoy your upcoming weekend!