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!
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!
For the most part, I am able to find something to make me smile through the often rough days I experience (be it from pain, GP flares, or just the ignorance I see in people everyday). But today is not one of those days. As some of you know, I was being worked up for a spinal cord neurostimulator to help relieve the chronic pain I have been suffering from the numerous screw ups during tube placements and surgeries. It was my last chance at being able to use something non-narcotic to relieve the ever present pain and get off the other narcotic pain medications I am currently on so that I might have some sliver of hope that I might start a family one day (the only dream I have really ever had). Today that little sliver of hope was stripped from the shred of dignity I had left standing. I have hundreds of specialists for one condition or another and it was my intent to find the best physician for those conditions. No institution is ever lucky enough to have the best of the best for every department which leaves me in the middle of five different networks. For years I have been the relay person, passing information from one doctor to the other when something new came up or a test was performed or samples were examined. For years I have been patient and jumped through every hoop they had for me in hopes that one of those hoops would be the last and everyone would finally just work with me, instead of against. It is only now that I find out that I’ve been always needing to prove myself to these doctors instead of them doing what I think their job is, and that is to listen, work at understanding and then believing. I’ve also realized that it is not MY job to be the relay person in this team of physicians, the quarterback of the group who has to both deliver information and be able to step back from it all, trying to connect all the dots in attempts at deriving a possible conclusion. This is the job of my PCP. The same PCP that has accused me of all sorts of horrible things and can’t get her focus off anything but my deteriorating mental health (again, who wouldn’t be depressed when faced with many life-long chronic conditions?). I stuck with her only because of her ties with my gastroenterologist that until this point has been the ONLY physician that has given me the time of day. And of course for that, I am most grateful. He has been my acting PCP, pain specialist, hematologist among other things. It isn’t fair for him or I, and it is time I found a PCP that does their damn job.
Taken from Hyperbole and a Half: I’ve been in some state of pain most of my life and have experienced many versions of the pain chart seen below (this is the chart I refer to as the “pain scale of uselessness”). Due to an unexpected procedure cancellation that was supposed to be diagnostic in nature, I stumbled upon a useful article I had saved from many months ago that made me smile. I post it here as many of you will find it nearly 100% accurate. Enjoy!
You’ve probably seen some version of that chart before. You may also have noticed how inadequate it is at helping you. Based on the faces, this is my interpretation of the chart:
0: Haha! I’m not wearing any pants!
2: Awesome! Someone just offered me a free hot dog!
4: Huh. I never knew that about giraffes.
6: I’m sorry about your cat, but can we talk about something else now? I’m bored.
8: The ice cream I bought barely has any cookie dough chunks in it. This is not what I expected and I am disappointed.
10:You hurt my feelings and now I’m crying!
None of that is medically useful and it doesn’t even have all the numbers, so I made a better one with all the numbers:
0: Hi. I am not experiencing any pain at all. I don’t know why I’m even here.
1: I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.
2: I probably just need a Band Aid.
3: This is distressing. I don’t want this to be happening to me at all.
4: My pain is not fucking around.
5: Why is this happening to me??
6: Ow. Okay, my pain is super legit now.
7: I see Jesus coming for me and I’m scared.
8: I am experiencing a disturbing amount of pain. I might actually be dying. Please help.
9: I am almost definitely dying.
10: I am actively being mauled by a bear.
11: Blood is going to explode out of my face at any moment.
Too Serious For Numbers: You probably have ebola. It appears that you may also be suffering from Stigmata and/or pinkeye.
Sorry for the late post on this, but I had a few complications after the botox injection. I experienced quite a bit of pain for days after the procedure and made several ER trips to help control that pain. The EGD and sigmoidoscopy procedure went really well. Dr. Patterson says my colon and stomach looked healthy except for a non-functioning esophageal valve and unusually tight pyloric valve. That is where he injected the botox. I still haven’t noticed any difference. The procedure was performed on the 23rd of August. I plan to make an appointment with him next week to see where we go from here. I hear multiple injections are needed to notice a difference but if I experience the same pain for up to a week after, I’m not really sure I want to continue unless I’m offered better control for the pain. It was not good times.
As of now, I’m back into my normal routine. Pain continues to live with me at an 8 on the scale of uselessness. Migraines are flaring up more often due to the abnormal heatwave we are experiencing. I can’t wait for fall and winter where I can enjoy being outside and not having to worry about my energy being zapped by the sun or getting sick and dehydrated. My weight is being beautifully stable at around 110, thanks to TPN, the only form of nutrition that has worked for me with no pain. I run it on a 20 hour cycle starting at 9pm, ending at 5pm the next day. I get 2000ml of fluid in which there are 1450 calories. I supplement some of those calories with a few scoops of the only ice cream I can tolerate, Sherbet (tropical flavor!), at night. Believe it or not, the ice cream is doctor ordered. They say you MUST put something in your mouth and in your gut to keep it from completely dying off. No matter what it is, or how small – something must go through it. This is all I have found that works and I don’t feel like rocking this boat by trying something new. Not yet anyway.
Exciting News: I have received a smaller version of the same feeding bag I use, to check out and make sure it would work as mine does so I can 100% recommend it or not to other tube feeders. I still have not received the smallest of the bags, and will be writing again soon to see if I can get my hands on those. I can’t express it enough, I love my feeding bag. It is so comfortable I have actually fallen asleep on the couch with it on. I’ll have to make a video on how to properly load a feed into it as it gets a little tricky (my husband had some problems with it so I figured some others might as well). This weekend is going to be a nasty one, in terms of weather, so if I manage to stay out of the ER, I will do my best to get a video up and my pictures from the scope I had last month. It is interesting for those who haven’t seen or had one done before =)
In remembrance of the two close friends I have lost this week. They are super important to me. Makes this disease and all others more real. How many more people must die before they take it more seriously?
