Here I am, relaxed but hooked up to the machine which tells you breathing per minute (white), upper heart, lower heart, (green) blood pressure and all sorts of fun stuff.
My one side of my face is red, due to being overheated and my arm is red as my body is putting blood to the surface to try and cool down. Good luck on that! And here, with a close up of the screen, are nine heart beats with two big erratics in them,
you can see my breath sucked in as I felt the erratics, as it is that spike in the white line for oxygen.
An electrocardiogram tells the Doctors and Nurses what is occurring in the heart. For example your pacemaker, or AV node tells the chambers when to fire, so heart is pushed around, if it doesn’t that is called IVR (the bottom empties faster than the top fills). Follow along by clicking HERE, then click on the different terms to explain the strip (some are for the upper chambers, like Sinus Tach, some are for the lower chambers, like IVR. IVR (which I had, along with about a dozen others) doesn’t provide enough blood moving, normally. Vfib, is when the bottom strip, the ventricles, are not creating enough electricity for a beat, which leads to heart failure, or Agonal rythym, which is seen right before asystole, otherwise known as ‘flatline’.
Each of the little boxes is .2 of a second, so literally only four or five seconds of your heart is often taken, unless, like me, you are hooked up to a continuous monitor and feed. Much of the early, later, and post medicine paper feeds off the EKG were taken for my chart, as I left once regular rhythm and/or Sinus Tach was established. We took some of the roll from the section after assessment and during treatment. The last time I came in, there were very small bumps, the kind you see here 10-14 times between heartbeats, or small extra beats, very small. (click to enlarge and read the ECG strip)
Because I was in sense with my body, those hurt, so I went in. That was two years ago, they said.
Since then, I have heart pills, and I have high levels of pain control and yet, the pain got so bad I did not have control over my limbs or the ability to see clearly. Instead of regular waves or Sinus Tach with small extra beats thrown in, there is almost random chaos, as while the heart does beat, there is a fluttering of the valve, those little bumps, you can see, up to eight times a second
going on for sometimes several seconds. When this happens, the blood comes into the heart but nothing happens, it doesn't move on, or blood backflows. This is extremely painful and my teeth are exposed in a grimace as my back arches off the bed.
Also, sometimes the heartbeat simply stops, or goes into agonal rythym.
Looking at strips like this, I wonder why I was let out of the hospital, or why I'm not dead. Sometimes the upper and lower chambers all fire at once, or the four parts of the beat are missing, just a burst of electricity, seen as a spike before going into asystole (flatline, which you can see starting), then into erratic upper heart chambers which take over the whole heart making it unstable, and blood not flowing. For humans, this is usually a very bad sign. Like a 'you are dead or soon will be' sign.
For me, is it normal? But every time they took the strip, every 6 second strip or four seconds there wasn’t 1 or 2 errors but dozens. To give you an example, a holter monitor, if you have an EXTRA AV node, giving you a heart condition called PAT, might have 47 or 69 irregular heart beats, or extra beats in a 24 hour holter monitor test. Here I had more irregular beats in two minutes than I did four years ago in 24 hours. I guess it is clear now how my disease (AAN or MSA varient) is a degeneration of the central autonomic system (the heart, lungs, blood pressure, vascular constriction, etc).
Sometimes the heart will keep pumping in the upper chambers while the lower chambers do not empty, which is both very, very painful,
but also cuts off blood flow to the brain and body. The readings are not supposed to go beyond the edge of the strip, but depending on how strong the electricity, or ‘pulse’, and erratic…, same with when they stop.
At least I give lots of variation for them to read, right? The machine would put out the errors, the recommendations, and the heart rate as well as other vitals. Sometimes that would simply be a ‘?’ which means, ‘unable to capture’ – which happened often on the heart beat, as if I am so erratic, it can’t count a reliable heart beat.
Here I am being hit with a series of erratics, you can see my eyes are shut due to the pain,
which wrinkles my brow as I arc my back and tense up as if getting hit by a baseball bat in the chest (as that is what it felt like). The monitor shows 11 heart beats, which have five erratics in the upper heart chamber and well, a BUNCH in the lower chamber
including the big spike up and down on the left (which is probably the pain I felt, causing me to clench and arc), and the erratic breathing to match the pain levels.
Plus there was an automatic heart rate and BP monitor attached to me, and if it couldn’t get a good reading it would tighten again and again, so I have bruises all along with that was. So this is a reading of what occurs to me for from 30 minutes to several hours every day, this was just in the midst of the fourth straight bad day.
I am wearing an eye-patch (ARRRG!) and not really sure what day it is because I am not doing well.
What stupid phrases we have, “not doing well.” Okay, normally when I have a ‘good’ day it means I can dress myself mostly and maybe go outside and a ‘bad’ day means I feel pain all day and feel like crap. But see, those are all above the critical thresh-hold called, “life sustaining.” Which right now I am dipping in and out of.
Yesterday, or recently I had a little bad medical thing, which became a big bad medical thing, which then became a bigger thing and started to include significant blood loss and other systems and suddenly it is past 5:00 am and I did not know know if I would be able to breathe off oxygen or when I lay down to sleep. I really hate being afraid, or terrified. Slow dying=no fun (remember that kids!).
I lay down to sleep anyway.
During the night part of my heart collapsed (an atrophied ventrical) and Linda had to pull my body over onto my back and help me breath, it felt and tasted like I choking in blood.
That wasn't fun. Then after I did sleep a long time and got ‘better’, upon waking I kept passing out: or to be accurate I lost control of my autonomic system which included consciousness, breathing, and sluggy heart beating. Linda and Cheryl were on the phone: it was ‘if this happens’ or ‘if this doesn’t stop happening’ then we go to hospital. 
Because when you have black fingers and hands AFTER 8 hours of sleep, and stop breathing I would need to have a tube down my throat in hopes it would keep me alive.
So today was ‘rest day.’ Except I did a blog post for the Postcard Project and a few other things (like spending a few hours starting my sale of manga to raise money). So the rest part will start really soon (honest) because I am past the ‘little better’ and back to passing out again (like I just looked at the clock and lost 40 minutes somewhere…put on Twilight Zone music). Plus I don’t want to go to hospital tonight.
So I am no longer in the nice somewhat stable ‘remission’ section (though Linda goes, “What remission? X is degenerating, Y is getting worse, and Z, sheesh, that doesn’t work at all!” – hey, I never got my remission, so now I am having one, okay!). Instead I am back in the sucky, “I really hope I don’t die this morning” which moves to “this afternoon” and “this night.” I am stuck, here in this body and apartment 
because if ANYTHING goes wrong, like I don’t sleep well or I don’t get enough liquids or even my body decides to have some seizures, I just start tipping toward de-compensation (dying). Turns out like my computer data, I don’t have a back up (body).
I am sure I will be back inside, in the land of ‘remission’, and people will stop acting so scared and have voices go up several octaves when things happen. I hope that happens soon. 
So I am determined to read ALL the manga I have.....when I don’t fall head first into the book. And I will staying in bed tomorrow. (oops, there goes Linda passing out from surprise!) As I am having too many problems breathing. But I am still making choices right(‘should I gasp and fall sideways in the study or the bedroom?’)? And if I could think of a good joke about it all, I would say it (boy will Booth Gardner be pissed if I show up in a black body bag?!).
See ya! Don’t worry, I HAVE to live, I have an art book from Akadot coming, and I need to take pictures from the book for the blog. And I hear it is REALLY hard to blog once dead. Screw Bronze: Zombie Edition. (whisper: 'not dead yet')
In short, my trip to bed was delayed last night because of a series of seizures. When I was awoken four hours later by the workers starting early on the roof by working directly above my head for the third straight day the seizures continued. Though I had been given a valium to help me sleep through the work on the roof, when someone starts pounding in nails in your ceiling 60 seconds later, it is hard to fall asleep in the .5 second breaks it takes them to grab another nail. My care worker seemed to be gone, Linda was down talking to the manager (who had “forgotten” I have to sleep every six hours: she was the type were you say, “But can we ask them what their plan is, since they have STARTED over our apartment for three straight days?” and she replies, “This roof is for everyone.”)
I did not know when Linda would return and was too weak to move, I felt an aura coming (the precursor of a seizure). The fear that I would be left alone and paralyzed while seizure after seizure occurred frightened me to the point that I hit the life-line button on my wrist. Because Linda was not there, nor could I respond an ambulance was sent and I was bundled up, nightie and that’s about all; into the ER van. After pushing the button, I did have a seizure so could not speak to the ER people. Linda was again, not recognized at my partner, though she announced herself as my medical power of attorney but neither of that got her past the first line of nurses into the ER, an hour later she bluffed her way in.
Apparently in the unloading bay, according the ER Physican Assessment, I had a clonic tonic seizure in the ER waiting area, was given Adovan. Followed by another seizure in the ER while on monitors (more Adovan). Blood was drawn (using Emla), and the anemia was confirmed, I was given Adovan for home use until I could see my GP and the Lyrica was approved for use until a seizure specialist could see me (oh, how many months?). Then back home….to the roofing, with still a few hours sleep. The rest of the day has been sleep and recovery. The roofers ARE here tomorrow and all next week. I HAVE to hope that this is not a daily occurrence. Much of my memory of ER was wiped by the seizures but this I know: One of the attendants turned to Linda and asked me, “So is this your mom?” Yes, I may be terminal, have no sleep and be in ER, but golly, I look YOUNG!
I will try to reconstruct more off the physician record tomorrow, today was survival, banging, talking to a manager who despite having three witnesses, two standing in front of her assures me that the contractor who is NOT at the site assures HER there is NO way the workers are starting before 7:00 am. Linda offered to call her up to our apartment Friday morn when they start but the manager just closed the door. Odd that.
My one side of my face is red, due to being overheated and my arm is red as my body is putting blood to the surface to try and cool down. Good luck on that! And here, with a close up of the screen, are nine heart beats with two big erratics in them,
you can see my breath sucked in as I felt the erratics, as it is that spike in the white line for oxygen.
Because I was in sense with my body, those hurt, so I went in. That was two years ago, they said.
Looking at strips like this, I wonder why I was let out of the hospital, or why I'm not dead. Sometimes the upper and lower chambers all fire at once, or the four parts of the beat are missing, just a burst of electricity, seen as a spike before going into asystole (flatline, which you can see starting), then into erratic upper heart chambers which take over the whole heart making it unstable, and blood not flowing. For humans, this is usually a very bad sign. Like a 'you are dead or soon will be' sign.
For me, is it normal? But every time they took the strip, every 6 second strip or four seconds there wasn’t 1 or 2 errors but dozens. To give you an example, a holter monitor, if you have an EXTRA AV node, giving you a heart condition called PAT, might have 47 or 69 irregular heart beats, or extra beats in a 24 hour holter monitor test. Here I had more irregular beats in two minutes than I did four years ago in 24 hours. I guess it is clear now how my disease (AAN or MSA varient) is a degeneration of the central autonomic system (the heart, lungs, blood pressure, vascular constriction, etc).
but also cuts off blood flow to the brain and body. The readings are not supposed to go beyond the edge of the strip, but depending on how strong the electricity, or ‘pulse’, and erratic…, same with when they stop.
which wrinkles my brow as I arc my back and tense up as if getting hit by a baseball bat in the chest (as that is what it felt like). The monitor shows 11 heart beats, which have five erratics in the upper heart chamber and well, a BUNCH in the lower chamber
including the big spike up and down on the left (which is probably the pain I felt, causing me to clench and arc), and the erratic breathing to match the pain levels.
