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

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.

Well – some of you know of the interesting string of events that I experienced over the past few weeks from Facebook status updates, but even Facebook was slightly censored. It all started out one night with an extremely bloated belly and lack of any bowel movement for the past few days. My husband had made the comment a few days before that I was bloated. Gotta hand it to the guy to have the guts to say something like that to his wife before even she noticed. Taking his observation for what it was worth, coupled with my own, I made a night trip to the ER at Evergreen. Mistake #1.

How NOT to be treated in the ER

I arrive at the ER with my husband and quickly get a room because they were not particularly busy that night. Bonus. I hate crowded ERs because those with chronic pain and chronic illnesses like us, always get the backseat when it comes to placing patients in rooms. Even the guy who drove HIMSELF to the ER, not doubling over in pain or wearing sunglasses or a washcloth on his head – complaining of a migraine – gets in over me, crying in pain, holding a throw-up bag with an extremely fast heart rate. Sure, let him go – he looks to be in a much more severe situation that cannot wait. —-Anyway—- we get a room as usual and I prepare for the normal battery of tests I thought were required for every ER admit. You know, bloodwork, x-rays, a physical exam… Nope, according to my attending, all those are for people in real pain with real issues. He walks in, with his face in my chart, sees the number of times I have been in the ER (yes it has been a lot but that’s because you morons can’t figure out how to control my pain or cure my disease! – hence my need for a pain doctor who he should have called but no, again, that’s for real patients) and he also sees my list of medications which contains ONE active narcotic given to me by my PAIN DOCTOR – Nucynta.

Side note: After the first two weeks of hell (mostly mental as it seems to screw around with your emotions and state of mind), it works wonderfully. No complaints after I’ve been on it for about 2 months now.

He takes his nose out of my chart and says simply this:

Go home and take a bottle of magnesium citrate. You are most likely constipated from all the narcotics you are on. Otherwise, you’re fine

Um..that is about the point I started crying in frustration and absolute rage. He didn’t even LOOK at me. Had he simply looked at my belly and listened for bowel sounds he would have noticed, without an x-ray, that something was wrong. I asked for an x-ray after he left because I was in absolute shock with my mouth open and paralyzed body. The nurse rudely says, “oh no, he won’t do that.” She hands me the bottle of magnesium citrate and I’m like – sorry, I don’t want it. If you have been to ERs enough you know what actions show the most rudeness back. Sorry but if you want to be rude to me, don’t expect me to take it. Not this late in the game. She gives me an ugly look and then hands me the typical discharge papers describing what constipation is and how to take care of it – proudly printed from the Internet. I said to her – take it back and shred it for me please, I won’t be taking those home either. Another insult. I’m boxing with both hands here. She gave another evil stare as she says, “well you will have to do that after I leave,” and she walks out with my rejected bottle of magnesium citrate. I promptly throw away their packet of useless information and advice. I’ve been dealing with this too long for there to be ANY information in there that I would actually benefit from. That and I knew it wasn’t a simple case of “constipation.”

How you SHOULD be treated in an ER

I call up Dr. Patterson in tears asking him what to do. I knew something was wrong. He told me to go to the ER he is associated with and to have them order x-rays. He must have called them or something because that is the number 1 first thing they did. If he didn’t call beforehand, than A+ to Swedish ERs. Blood was taken, of course, fluids were started and I might have gotten some IV toradol for my back that is infected, but they don’t know it yet. We wait for the results. I’m exhausted by this point, the emotional roller coaster I was on was enough to knock me out but the physical pain and discomfort kept me awake. How nice. The x-rays came back in record time and they sat us both down together (LOVE my husband for being there as he is often my advocate when doctors fail to listen or believe in me) and explained that I had an ileus of both the small and large intestine. This is not common. My entire digestive tract was frozen solid, paralyzed, not moving. It was a pretty serious situation based on how quickly things moved after that. They knew I had to be admitted to a hospital as the ER I went to is just an ER (it also has doctor offices on the floors above). They asked which hospital I would like to be transferred to and Evergreen was a possibility. Ha, no thank you – I will stay within Swedish as my GI is there and they don’t screw you over when you come in. *note, the ileus was not caught by the ER doctor in Evergreen why? Oh that’s right, he didn’t listen to me, believe me or even do a simple x-ray or physical exam* I got transported to the Swedish Hospital in Issaquah as it is brand new – I’m talking they just opened the patient rooms a few weeks before and I was pretty sure I was the first one in the hospital to even use their pumps. To further ready my departure to the new hospital, they placed an NG tube. Not the normal NG feeding tube. No, this one was for suction and was about as thick as your thumb. They placed with with no sedation and as they advanced this HUGE tube down my nose, I hear it cracking all the way through. Oh it was horrible. Not another tube in the nose!

Throat, ear and mouth (jaw) pain, incoming. They didn’t run anything – they just set it up, including placement of a new PIV for contrast. They refused to use my port. They didn’t want to change out the needle for the kind that handle the contrast. Oh well, like everything else – I let them do their thing until they start screwing up and then I become devil patient.

I slept/rested in my room with my husband as we watched TV until the ambulance arrived to take me back. Victor went home, first, to take care of the dogs and feed them and I told him, since Issaquah is no short drive, he was welcome to stay home since it was so late already (after midnight, easy). Looking back, I probably should have had him stay. I’ve learned lots of things after these few hospital stays which I will sum up at the end of my novel of a post. Sorry =(

The Hospital Stay: Part I

The ride over to the new hospital was my first time in an ambulance. Not going to lie, I always wanted to ride one. Little did I know I’d be right back in one within the next week. Transition from the ambulance to my room was smooth. The room was beautiful, all the rooms there are single and have glass doors that slide open instead of the regular heavy door that opens without you knowing who is exactly coming in to hurt you.

A decorative curtain went all the way across that was usually open just enough to annoy me. What is it with nurses and doctors leaving doors and curtains wide open after they leave? Is that in their job description or do they think that much of themselves to NOT close the door after leaving? Their loss because each time they did, I hit the nurse call button just for them to close my doors (including the bathroom one, which I can’t on my own, and once in bed, I can’t get back out without help. No body needs to see the bathroom. Close the doors, people!

So I get hooked up to IV and TPN feeds (run over 19 hours) and the NG was on 24/7 suction. I’m waiting for my GI doc to e-mail me the x-ray that prompted this long chain of events so I can post it. Out of his mouth, “your first x-ray (I had many) was quite impressive.” Awesome in a not so awesome way. So I had my IV and my TPN but no medicine. It is by now like 1am. They have a list of my meds, none of which I received without asking. And even when I did ask – I wouldn’t get them for about four hours. Constantly clicking the nurse call button and I’d hear, “your nurse is with another patient, she should be done soon” or “your nurse is working down the hall of patients, she should be to you soon.” Any excuse to not get me my medicine, I heard it. I shouldn’t feel bad for asking for my medicine. I don’t care if a patient down the hall can’t keep her moans to herself. I still had the temporary spinal cord stimulator in, and a quickly growing infection. Take it like a man, sister, or I’m coming down there and giving you a real reason to moan and grown throughout the halls of the hospital. My pain was a 10. I NEVER give anything a ten, but this pain deserved it. But when you have an ileus (in my case – two), you aren’t allowed narcotic pain meds and the non-narcotic pain cannot bring down level 10 pain. It is like coming out of a major surgery and not having the proper medications available. Yes I get my gut isn’t moving but you know what? It hasn’t been moving or when it did, it did it sloooowly, I don’t care about it anymore. Take away my pain please!

I did have two great nurses though. They were on top of anything I needed and when I told one nurse I was at a ten when asked, she was shocked and said, “I’m not happy with that, let me see if I can get you something else.” I also had HORRIBLE nurses, one I had the displeasure of having twice! She was the “special” one. When I came home to talk to my home care nurse about what she did, she was in absolute shock – completely speechless. My nurse put Imitrex IM (a SHOT) into my IV. I was lucky to survive that. My head was going to pop. I was like, did you just put that through my IV. Yeah, she says. Yelling now – Imitrex is NOT for IV!!!

I went through the whole week living off toradol and tylenol IV. They were never scheduled correctly so I’d get one after the other and then not get anything for six. Not too bright there fellas. I was also not given my normal medication. With this being my first ileus, I didn’t know what was normal and what wasn’t. Maybe they kept my other meds out to see if it accelerated the healing of my ileus. WRONG. After they messed up with my pain meds and not enough Ativan (again, it is in my charts people!) I asked for IV Benedryl to help calm me and let me sleep. Nope, nothing doing. So of course I’m up all night and manage to get into a deep sleep as my attending doctor crashes in my room, flipping every light switch on, that was available (I had the light blocker shade down to keep it dark (for my migraine’s sake). She shakes me out of my, what could have been, amazing sleep with her LOUD voice of pointless questions, spoken at the slowest pace ever. I’m sorry doctor, surely you understand you just woke me up in the worst possible way, I’m still trying to even understand where I am and what I’m doing, I am not going to be answering your questions. Oh, I am also not deaf nor mentally slow. Stop talking to me as if I was, kthx.

My GI doctor makes it in on Monday (I was there since Saturday night) and he asks are they giving you anything for pain? Um…NO! Nothing. He’s ah well let’s get that fixed. He didn’t offer much but he did what he could without further messing up my intestines. Yes, that’s right – I was without ANY pain medication for a few days with a MRSA infected incision just milimeters away from my spinal cord and a non-functioning gut that just kept expanding as air kept getting stuck.

By now they believe me about my back pain and how I believe it is infected because it soaked straight through my gauze dressing and onto my bed (that never got changed…Ellie sheds, enough said). No one in that hospital has even seen one before so they basically denied any responsibility for it or its care. It would be 2 more days of hell before they finally decide to take it out. It was the most painful thing to have in, due to the infection.

Even from just looking at it bandaged up you could tell it was infected. I, myself, had a temperature of 103 and my back, where the stimulator is taped, was so hot my doctor asked if I had been using a heating pad. It was also very swollen. So their pain “doctor,” the word doctor used very loosely here, came in, ripped off the tape holding down my machine and then starts to pull it out (my leads were long as relief only came from them people placed up near the cervical spine). I asked if he would at least wait for me to get my nurse to push some toradol or something. He laughs, this won’t hurt – it’s like getting stitches out. But it is infected, I said. He says, “no no no, it isn’t infected.” Yes yes yes, it is infected and hurts worse than anything. Is he listening as I say this…no. I should have stood up to him. Let that be a reminder for all of you, do not let nurses or doctors boss you around. Don’t let them do things without you knowing exactly what it is and you come first. I should have refused to turn over on my stomach until my nurse came with pain medicine, but I didn’t. I was lucky that one of my best friends was there to help comfort me as he pulled out the long leads. She also took pictures. Lol, I saw her whip out her iPhone and asked if she was taking pictures of this!? She nodded and I was like, well use my real camera then!

She was such a trooper having to watch that happen and to give me so much comfort. Well, anyway – it was out and I will say that most of my pain was gone and I was finally resting. Then jerk hospitalist comes walking in to look at it. He asks me to turn over so he can “look” at it and I politely refused until he stopped asking and started demanding. So I rolled over in complete agony and he starts poking around. Oh man, so much for feeling any better. Way to mix the pot and stir things up again, Mr. hospitalist. You rock!

They did culture it but it would be a few days before they’d know exactly what it was. They started me on two types of antibiotics and at the end stuck with one, Vancomycin. Days go by and my GI doctor comes to visit again. He sees I still have the NG tube in and insists on removing it. He’s pretty strong because I held it in as best as I could but out it came. Hurts just as bad going in as it did coming out.

With the NG tube out and antibiotics 3 days in, my hospitalist, despite not fixing my pain and not accomplishing any goals due to this pain (standing without support, walking, etc.). I was completely against discharge. I called up my GI again – sorry for calling you all those times, doctor, but you are just THAT awesome – and he said that I could go home any day I feel comfortable with. Well, today wasn’t that day and after a lot of arguing and such, I still ended up being discharged. I had asked for a social worker as soon as I woke up that morning because I felt I was not treated as I should have been treated. She did end up making it right before my discharge papers were made. She was pissed at how I was handled, especially the medication part. I said that I understood if they were short staffed (definitely not the case I later learned) or their nurses just can’t juggle this many patients, but I still do not accept that as any sort of excuse to neglect me. The social worker said that next time I go somewhere to be admitted or even at the ER, find a social worker to be your medical advocate. They can help you and will do anything within their power to keep the doctors and nurses on their toes.

Back Home…it was nice

I get home and my homecare nurse comes by with more TPN (as I was in the hospital when my normal deliver would go out), supplies and my new IV medication – Vancomycin.


I showed her a rash I didn’t find until washing up before I got wheeled out of the hospital. I didn’t think anything of it until I mentioned the rash to her who then called my doctors. They all were aware of me and the infection I had (apparently when something bad happens to regulars, they talk to other people about it) and said to take benedryl an hour before taking the Vanco. If the rash didn’t improve (be gone is what it should have been) by morning, I was to come back in. And as a good girl, that’s what I did, but not Evergreen this time – I’m still shocked they sent me away with the ileus and MRSA infection.

ER again

So I’m in the exam room and they want to know why I’m there. This was going to take awhile. I first started off with the rash and how I was told to come back for that. I then showed them my back, letting them culture it and asked for it to be re-bandaged. I was also rolled in for another CT and x-ray. Ileus looked better, no NG tube. However, the results from the culture taken at the other hospital location came in just an hour before I came to the ER. My AMAZING attending actually found it and came in to tell me the not-so-good news. I sort of figured it out when my husband and father came back from lunch dressed in gowns; I had MRSA.

He talked with the hospitalist that released me about my rash and he STILL manages to be a jerk saying, “there really isn’t a reason to bring her back in, as it is probably not even related to the Vanco, but we’ll accept her if you feel she needs admitting.” So he goes and calls the infection disease (ID) doctor and he told them to transport me to his hospital immediately. Fever and resting HR of 140 on top of everything else, they once again, readied me for transport. This time it would be longer but the attitude of my ER doctor was awesome. He wanted to step back and have a real plan. So that’s what we did. Ambulance came and they let my dad come too. I slept most of the 45 minute drive (thank you traffic).

Hospital Stay: Part II

This one, I was told, would be short. ID looked at my wound and then changed my vanco to IV daptomycin. And guess what happened? A few days after the vanco got out, my rash went away! Amazing how that works out. I also was surprised by the service. My attending doc had ALL my medicines (regular and IV special ordered as well as TPN) already ordered, before she even came in to see me! They were all so nice and had everything under control. I was relaxed for the first time. And since my ileus was resolved, they allowed me pain medication strong enough to give me one night pain-free. I will always remember that feeling and hope to have it again someday, even if it is just for one night. But yes, this was a short stay. My ID doc came in the morning to check the infection and to see if anything new popped up and said I could go home that day! I felt so much better going home that day. They made me feel comfortable with myself. Thank you Swedish Hospital Medical Center: First Hill! You guys rock, keep it up.

Wrapping it up…whew

On the same day I was discharged for the second time, my father had to leave. He had arrived the day I was discharged the first time. Overall I learned:

  • Stand up for yourself as you know more about your body than anyone. Don’t be bullied by nurses and doctors.
  • Remember to take some responsibility for everything the doctors and nurses do, refer to my Imitrex IM situation, they make mistakes too
  • Get a Hospital Social Worker if you know you’ll be in the hosptial for a few days. They will help be your medical advocate and keep doctors on their toes in order to make your stay run as smoothly as possible.
  • Trust yourself. If you feel like something more is wrong then keep looking for someone who will listen. I had to go to two different ERs before someone would listen and DO something about it.
  • Still try to smile and enjoy being alive =)
  • Anyway – that is why I have been in and out of the Internet. The lead incisions are still swollen and there is a slight lump that I must have another ID look at so that I can be cleared for surgery. Yes, I have been approved for the permanent spinal cord neurostimulator. Everything on their end is ready, I just need to pass the ID test. I’m excited. In case I didn’t talk about it before, three days before I was admitted, I had a spinal cord neurostimulator placed temporarily in my back. I control it with a remote, unlike the gastric one which requires a doctor to change it, because simply standing up can move the leads on your spinal cord, changing the frequency and voltage. Those are the two things you can move up or down. I think I’m his first patient to ever have one placed for generalized abdominal pain but as soon as he put it in the right spot, I could tell a major difference. It was great. My ID appointment is on Tuesday. Because of all that has happened in the last few weeks, I may have to push my surgery date until after the holidays. As we will have family. Not something you want to be bringing them to – your hospital! Nor do I want to be in the hospital on Christmas either – did that last year. Not fun. But it is still coming up soon. If I hold off until the end of the year, I’ll have more time to recover and have that recovery time close to my doctor should anything go wrong.

    Time for bed. Happy Tummy Days to everyone!