Amoung the loss of words, the frustrations of dying I send postcards and sell on Ebay.

I spent 30 years studying the entirety of the English language. I studied over 1,000 years of English in over 30,000 books. I learned to translate 17th century French, my final was to translate a decree from the King regarding the tax on glass makers and sellers of glass in the city. I studied latin, from the obscene graffiti in Pompeii to the lurid plays of 100 B.C. to 200 A.D. All so I could understand English: I exploited it, consumed it, reveled in the odd and needless complexity of the Corinthian set and compared it to the Green Carnations attempts to hack to language and dream center of the brain (all 100 years before Snow Crash by Stephenson). Robert Chamber’s attempt to explain the influence of the Yellow Book, Wilde and Aubrey Beardsley’s lure into the lurid, tawdy assault which dragged all who saw, participated, or was inspired by the ‘Yellow Set’ was to write a book. It is a book about a book called ‘The King in Yellow’, and each story of the book is about characters’ inspiration within the arts; shattering the perceived boundaries of language. And out of that rift into the horizon of the imaginable, that blank part of the map of morality and art, there crept in madness. But it was a madness of awe, the thunderous church organ overwhelming the senses until the self…..and sin, were lifted away.

That is how Robert Chambers described his experiences in Paris, at the Fin de Siecle (end of the century) when Munch and Wilde along with all artists influenced by the Aesthetics broke rules simply for breaking. He read and saw M.P. Shiel’s opium inspired works, and Machen, as Occult combined with Religion, Gnostic with Erotic, and in all things, sensual and symbolic. So in Chambers’ book all those who see the book The King in Yellow (referring to Wilde’s Yellow Book) became genuis’ and morally lost, infested with ancient decay. It is what inspired Oxford Don M.R. James, Lord Dunstay, later Lovecraft and eventually, up in the mountains of California, Clarke Ashton Smith, who read the 11th edition of the Encyclopedia Britannica (the same edition I have – a leather one for sea captains). C.A. Smith’s works kept the linguistic torch burning. He was, like Lovecraft and Conan Doyle’s (I also have the entire run of the Strand Magazine in original bindings from the start for the first 18 years) detective fiction, a unique voice. By the By, April Dereleth of Arkham House, which printed Lovecraft, Henry Whitehead and William Hope Hodgson to Ray Bradbury’s Dark Carnival ( died March 21st, 2011 leaving sales and all other aspects of Arkham House suspended at present.

I have groped, over the last 90 minutes and two paragraphs, for language, and trying to explain the frustration of ‘words’ after reading Boewulf and Chaucer in the original. I read, wrote, and read again the subtle meanings and connections of 1600-1910 language in books from the King James Bible to Falkners’, The Lost Stradivarius, and they ran in the background of my mind. At all times, words were examined, reexamined, and I kept from boredom by listing, as listening, the other meanings of the words and sentences uttered. (“I hacked away at language’ – a) hack from the news hacks of Dickens times, hawkers and later when the press was printed on Yellow Paper and akin to Fox News, more entertainment than news, a ‘hack’ – news reporter, ergo, I am a base worker of language or b) hack – to ride, a horse, to take to point, thus ‘I take my words to a steady canter’ or c) hack – from 1980’s to break, to find the holes and pass the metasystem, ergo to write beyond language or d) hack, from labour particularly woodsmen, to hew and hack, to take down with brute attacks of an axe or blade – it is this last one. This is how I would think, in the background of my mind, in less than a second.

But it is all gone. I wanted, like Murphy (he created the Oxford English Dictionary) to know English of ALL times.

A worker asked me how much IQ I had lost. I thought it was about 50 points, but up to 120 at times. I don’t know how to calculate the loss in how I think, or how I don’t. How I struggle to remember what I do next, or to stammer and find words to express the feeling, the one which means I need to pee.

I rebooted today, or lost a day entirely and all of the memory of what happened before it. Exercise mades me strong, but it also cost me all the corners I cut. I lay burning in pain for 12+ hours while my body did not die but repaired itself, and in doing so made me stupid. The problem with the book Flowers for Algernon is that is stops too soon. Those who read it are saddened by Charlie going back to the past, but it does not tell us of Charlie’s daily life as he must deal with what he knows he was, and could do, and what he is, and must do.

I will die. And I will die fairly soon. The tree of cherry blossoms I saw going out of boxing I will not see again. It was my first time out since the hospital 8 days earlier. Earlier on this blog, I wrote about dying, because I was trying to prepare myself and examine what dying meant, and what I would mean to those around me.

I don’t write about dying very much because I am too busy doing it.

I don’t know when I will wake, or sleep, and I work and struggle to stay alive. When I box and sweat, and push myself, I feel myself teetering on an edge. Today I was to get my hair cut. I had showered, and I was ready, and had spent 2 days getting ready. But I was too sick, and slept 7 hours beyond my appointment, waking from the sound of my moans, and my heart studdering and trembling with agitation to wake me. The body jerks so badly I cannot see clearly. “Is it now?” I wonder.

The people who wait, maybe they have something left to say, maybe not, for they are in a world which to me is like high school. There are those people at work, and those at home and everyone wants to believe that things will remain the same. And the focus is on today and tomorrow and ‘Did you hear about…’, and so the struggle to talk, once every few days, in belaboured, slow strokes, becomes lost in the background noise.

Aren’t you angry that I can love something so much, like the evening light on the buds of emerging blossoms, and yet, will never see it again? That my actions now are so deliberate because I can’t risk it being otherwise? I am. I’m angry. Yet I can’t show it.

The latest loss is strong emotion. I have the emotions but have learned that to feel them, to let myself become agitated or excited means that my heart and heat jumps the regulated limits of what can be sustained. And I lie back, calling for help to bed, because I got overcome with emotion.

I cry, but with a face that is bland, and breathing that is controlled and counted. I groan, as a passenger in my own body yet the center nexus of suffering. This is what it takes to survive. And actions, like boxing, are done without the knowledge of what comes next: death, bed, delirium, revival?

Ebay this week, all week. I worked hard this week on the ebay auction. The first 40+ lots of manga, and some graphic novels are here, with 30+ more to come on Sunday, all finishing next Sunday and posted two days later. Most are out of print lots and several are selling for the price of just ONE of the volumes (for example the Queen’s Knight volume 12 sells for $70, but I am selling all 12 volumes, as New for $50). The volumes are quality and I hope they go to good homes. I will not have time or strength to read them again. I will talk about the sale more next time.

The other thing I have worked on, ever single waking moment is to build funds to pay back Linda and Cheryl what they have kindly lent me, mostly for gifts or postcards. At the same time, I am working on postcards, gifts to send and letters. I want very much to say 'goodbye' individually to each person (which takes planning and effort) but don't want to limit myself to just one 'goodbye' postcard. I don't know if I will live three weeks, three days, or six months (the last is something no one really believes, even me, except on the best days, for a few hours). I want to try and send out postcards that require less stamping, and more stickers (the stamping makes my heart hurt like getting crushed by a Rugby player). I want to write those who are and have been friends. In my Amazon Wish List (you can use the link at the top right as well), you will see that I have added lots of sticker sets, which all happen to be in the ‘buy 4 and pay for 3’ sale. So that means, if you buy Classic Travel Poster Stickers(a fav of mine) and Stickers of WWI and II, Old Time Transportation Stickers (last one!), and Edward Hopper art, you get the last free.
If you scroll down, you will see different stationery sets, from Dark Horse, which I can write notes, as they usually have 6, 8 pages, but in different styles (pin-up girls, dragons, vampires, LENORE!!!!!! and goth girls!). These go with small gifts, or by themselves and that makes Stationery sets $3.75 each, while they last (they all have about 8 left or less). All these items are also 4 items for 3 and can mix and match with stickers or with stationery sets you want for yourself! There are also stamps we use. Every month we try to send out a ‘kids’ postcard to all those 15 and under. The dino set is reported to be the best for use and for reuse, and the other is of Emily the Strange. With Linda and Cheryl’s help I did over 200 postcards last month. I would be very happy with 100 this month, but I can’t do it anymore alone. If you notice more stickers on your postcard, it isn’t that I am not thinking of you, it is that I am thinking of you but expressing it in the ways I can.

I am very ill, and I am an invalid. That I still am able to communicate as much as I do is a blessing that I am thankful for. I know I won’t be able to for much longer.

Linda, who uses 25 post it notes a day, with her work on ebay, and applying for jobs and other spreadsheets, would love the Bettie Page post it note collection listed in the Wish List. The other items on the Wish List range from The Lost Room, a DVD set I want to watch with Cheryl (recommend!), to Wit, Emma Thompson on dying. I want to see if there is a way to do it funny, instead of just ‘this is how it is’. Maybe in getting out the message, I lose the funny somewhere.

There is also the usual manga series I am reading, and authors I can understand, and some things I am recommending for others (like Polar Obsessions, on sale!).

I have been finding and getting postcards, including ones from Alchemy 1977, which are very steampunk gothic, also gothic galore and will delight some.
They have a playing card set I lust and long for (on the wish list), as it has 53 postcards with amazing graphics and blood, soot and grit splattered cards to play. They also run a line of Steampunk, including this pendant Alchemy Empire Aeronautiqua which I want to get as a gift for someone. I am all a quiver to earn the funds for it (and then give it away).

When I saw the line of Alchemy 1977 products I got so excited I gave myself a heart issue and had to call and wheeze and get help and oxygen. This problem comes from a temporal lobe issue: I feel things with culmination, in an explosion of emotion as it washes from my frontal lobe back to my other lobes. Perhaps a time when having so many connections to my emotional center (as females do) is not such a gift (I do however enjoy films so much MORE now, but have a hard time, for a day or so afterward, convincing the self that I do NOT live in a zombie wasteland).

I need sleep now. This is what I do: work, communicate, sleep. I still work toward the things on the last list: panties, socks, haircut, red vines – and now, with postcards to hand, I want to disprove Linda by sending them all out (she said, “You have more postcards than you will need for the rest of your life!” – which is like saying ‘You have more books than you will need in your life’ – even if it is true, a person simply doesn’t SAY IT!). So I will prove her wrong, and send all the postcards out, the rare and the wild, the unique and delightful, all out, and read all the books too…..ha! So there!

While "Waiting to Happen": Reading Recommendation of the week

Onward! Today I caught up on sleep, and slept in for the first time in several years. I hear that this is common with an increase in pain medication as the fatigue builds up when the pain brings me awake. Also, due to being weak from a long series of seizures on Friday (I think?), where Linda found me fallen on the floor in the study and having seizures. I continued having many more which made the weekend, my ‘rest from the hospital time’ instead a ‘strange bruises and exhaustion from seizures’ time. Also in the final weeks of life, a person sleeps more, but I have decided to go with the ‘fatigue’ theory, and decide that after several years of 'go, go, go', one day of sleeping in is okay, particularly as I couldn’t get up (I was supposed to go to boxing, but was unable).

It feels like life is waiting to happen. My body simply doesn’t have the stamina to cut corners or push myself anymore. Things take how long they take, whether that is 40 minutes to pee, or an hour to eat a meal. And I need to sleep eight full hours and have a 2 hour nap. If I don’t, I simply can’t get up. Plus, cutting corners means my heart fails for the last six hours of the day. I do not recommend this.

In order to have enough energy to keep my heart beating in a way that does not tax or stress my other body functions, I can only do one thing a day. And even then, I can accidentally go over. It is hard to relax.

Saturday I matched postcards, but was unable to stamp them because of some sort of fatigue which occurred (my memory is blurry due to seizures from around then). So I will work on them this week. Did you know that with Linda and Cheryl’s help I did 220 postcards in March? This means more than 6,000 individual postcards have been posted. Many postcards sent this month were from readers who sent in the best (and lest I get attached, out they go again), some were museum quality ones I got from an estate, and some were saved to send and beat back the grey ‘blah’ which exists between winter and before the arrival of spring.
Linda and I have been working on an ebay auction of some of the manga sets as well as Region 2 and 4 DVD’s which will start in auction on Thursday. I hope this will help provide some emergency funds for after April and help me get some supplies in Seattle (as due to a special 'grant a wish', I am going to Sakura-Con, as much as that is possible for me). Though I am still waiting for my celebrity make-a-wish, which was a baby oil massage by Angelina Jolie OR giving corporal punishment to the head of Ex-Gay ministries. I don’t know why he won’t, as it is for a poor dying nun (well, I’ve sex cosplayed a nun), and I’m calling it ‘reparative therapy’. Until then, saving for the Seattle supply run of shopping.Due to a year and a half economizing, there are many things which are needed:

a) haircut – I have my hair in braids all the time due to tangles as I had my hair cut last for last year’s Sakura-con
b) panties – down to three pair, and two are the kind which one is advised not to end up in the hospital in (Go go Victoria Secret!).
c) Socks – two pair, these two pair are gifts from the last time I asked if anyone would make socks for me. I have tried to make them last as long as possible, as I don’t want to have to ask again, but I really, badly need a few new pairs of socks
d) Melon and Lumina soda: this is japanese flavors of soda available at KK, a Japanese store in Seattle. I also get the stickers I send on postcards there.
e) Toothbrushes: something good to have after a year. My bristles are all flat...odd that.f) Sleepshirts – I have three sleepshirts, which are two years old, so I am needing some more, as when I combine hand shaking, neuropathy and food and you can imagine the problems over time.
g) Summer tops – The Edema isn’t going away, so I need a few new tops which are comfortable but also 'cool' saying stuff like: ‘Halfway in the grave, and if you piss me off, I’ll take you with me!’ or ‘Zombie Busker: Brains much appreciated’ ("Zombie Grad Student: REALLY need more brains")
h) Olive Garden: Linda loves the Olive Garden, which is on the way to Sakura-con, and I want to treat her to the lunch buffet ($7.99). She does a LOT for me, so a favorite lunch in a strange and foreign land (Tacoma?) seems a start to the thank you's.
i) Earrings: I seem to have 12 of one earring in a set, where the others have gone off to, I don’t know, I think emo boys keep sneaking into my house and taking them (girls would take both earrings, right?).
j) Hair Conditioner: I have ‘baby fine’ hair due to the Autoimmune disease so I have to use a specific conditioner good for baby fine, with tangles and delicate hair (I make this last by using it once a week and then braiding).
k) Old Navy: Linda has already been working at her part time job for the conservation, weddings and concerts at the Saint Anne’s Academy, which requires her to have some new professional tops, best picked up at Old Navy in Seattle for $5-$12.
l) Red Vines: Sometime during my seizures, I suddenly twigged to needing Red Vine liquorice. Since I don’t get hungry, I assume that the portion where my like of Red Vines lies in my brain got zapped, turning on the idea of a ‘good taste’, though I taste very little at all.
m) Haribo: from the gummy bears, to the balckberry and raspberry gummies, I love the Haribo products, and they are ‘fat free’. And work well as if I don’t eat every few hours a little, I get low blood sugar, also, sugar helps me boost my blood pressure at times when I can’t take another heart pill or caffine.

So, that is part of my big shopping trip, which I am raising funds for by selling DVD’s of military, crime and series from Amazon UK, as well as some rare complete manga sets I have been keeping for reading. There will also be some Graphic Novels, if there is time to prep to sell them, yaoi, action, Viz Signature line.

My reading recommendation this week is Chew: Taster's Choice, which won not only best indie graphic novel for 2008-2009 but also every significant award out there from the Eisner to the Harvey’s. I typically don’t recommend US graphic novels because they aren’t tightly written, mind blowingly good, like this one. The two authors decided to not go the commercial route but write again and again, books until one got published that was so good it immediately went on the New York Times Best Seller list. On Amazon, it has an ‘intro’ price, and is part of the 4 books for the price of 3 offers and can combine with regular fiction, manga or graphic novels, so if you want to try something humorously different with your spring/summer reading, pick up volume 1 of Chew for $7.50. (for those who want some other graphic novels on the 4 books for 3 offer, the Victorian True Crime series might tempt, like The Borden Tragedy: 1892 (Treasury of Victorian Murder (Graphic Novels)))

The tale Chew is of an alternate USA, where SARS spread, making chicken illegal, and poultry the hottest illegal drug out there, with ‘Speakeasy’s’ where chicken can be eaten, and new crime bosses who control the golden nuggets of the east side. And our hero, Tony Chu, works vice, who left drugs for the big bosses, the chicken smugglers. Tony’s brother is a famous chef, who went loco on his TV show one day, ranting about chicken conspiracies, while his partner John believes that all bosses who shout too much are due to pent up mano-a-mano sexual tension (a theory which comes up in stake outs, and John’s bed). Thow in the F.D.A. (now more powerful than homeland security), a Russian Telescope, Arctic Vampires, and a one sided crush between Tony the Cipopath (he connects psychically to what he eats…including victims or perps) and a newspaper food reviewer who can make people taste the food she writes about and you’ve touched the first dozen pages. It’s that tight, well written, and doesn’t say what a picture can tell and vice versa.

For those who enjoy a well crafted non-linear narrative, I recommend finding Lost At Seain your library or from Amazon. It is from Oni press, and is written by the author of the Scott Pilgrim books (or movie if you saw that instead about defeating the ‘evil ex’s’). Lost at Sea is about THAT road trip, the place and space in life, when you are with people, who seem to be bonding, or buddies and you aren’t. Indeed, you are lost at sea and only going because you don’t want to arrive. The book has a non-linear story telling that stays with you, and gives name to that emotion you feel at the end of the day, when you avoid the conclusion that lying in bed offers. It is stark, clean, engaging, and is read with pathos, seeing your emotions or life acted out in the pages of another’s hand.

A thanks to many people over the last three months. To let you know: If you use the Amazon links embedded in the post or wishlist link up on the right, Amazon gives me a gift certificate in 90-110 days with a total of couple percent of total purchase ($14 for example). This month, the first I got a certificate, that meant I got a graphic novel at the end of the month (4 days ago). Thank you everyone very much, I will pass it on as a gift when it arrives and is read. When you use the link, whether it is a gift for me or others, or shopping for you, anything you get from Amazon (for you, for others) for 30 minutes after using the link is credited a couple cents to the future gift card. I only have the Amazon link as I buy from Amazon, they have free shipping, I send Amazon gifts, buy with gift certificates and they have excellent customer service and returns. And this way, you can 'give' a gift to Linda or I if you chose simply by buying through here, or not.

Films and DVD’s next time. I just watched the BBC Sherlock and have a keen desire to a) avoid London traffic and b) see if I can get ‘acute thinking’ with nicotine patches.

Heart Monitor, ECG/EKG readings of erratics and patient pictures from the Hospital ER

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.

Hi-Ho, E.R. here I go!

I went to the ER because I have heart, lots of heart. In fact the problem was the imminent eruption with bits of my heart over here, and some over there, and a bit on the monitor. The high blood pressure wasn’t helping.

One ER male doctor, Dr. GungHo, was a combat action junkie and charged everywhere. He was shouting out stuff: central lines into me, IV’s, blood draws, more blood work and an in and out (you don’t want to know that unless you like catheters so much you want to have straw stuck into your bladder).

I had waited a bit, you know how things are, so much to do before dying. But after three and a half days and all the heart pills I could take without flatlining, it was time. E.R. we go! The downside of delay is that I had this red haze in the brain and eyes, I couldn’t speak clearly. This made a comedy of ‘Who’s on first’ with Linda giving me ‘break pack’ of emergency ice in the wait room as I tried to explain having a “HEART attack!”. Which must have come out like “‘eak ‘ack”, another time, falling OFF the ER bed they transferred me to, I asked her to ‘Raise the bed arm.’ As I was about to fall over.

“You have a bad arm?” Linda asked, as I leaned closer toward a 4 foot drop and face plant.

“Hospital bed, raise arm of hospital bed!” I tried to speak slow and clearly.

“Raise your arm above your head?” Linda asked with a puzzled look, but started doing that, and eventually raised my arm above my head, while I finally fell over and indicated what I wanted by knocking the side of my head against the lowered hospital bed arm.

‘RAISE, please!”

“Freeze? You need a blanket?”

I groaned in agony and tried other words, “LIFT!” “UP!” and she got it and got me into the bed. Just in time for Dr. Gungo to get his adrenaline fix for the day by charging my bed with two RN and someone who just ran off to do what he shouted.

I tried to let the person in front of me in the lounge in first. I mean, he had a bag hanging out of him with blood coming down the tube. Which is a bad sign in my book. I tried to say, ‘take him’ except I could only see out of one eye and couldn’t spot him. Plus my speech was interrupted by groans as y heart was at 70% erratic by this time, and I wasn’t breathing but coughing and choking, sometimes not breathing at all.

Dr. GungHo was at the end of the bed yelling, “When’s the last time you coughed up blood?” I was showing the blood that came from my nose and ears, but he was obsessed and then when I got him to understand it was just food and phlegm as I aspirate, he started yelling for chest x-rays. I tried to explain about the needle phobia, but with four people in the curtain and Dr. GungHom who was trying to hold me down, thusting his face forward almost into mine and telling me he didn’t give a damn out my needle phobia. I kept thinking, “Uppercut or choke the trach?”
But the RN female, RN Busy, was on my left distracting me from levelling Dr. Gungho, as she was saying, “No, I don’t have a needle” while she had the rubber arm wrap and a LONG, THICK main line needle in a sterile holder in her hand. I kept pointing to the one good vein (right arm elbow) but Dr. GungHo was shouting, ‘Put it straight into the hand!” with that 'no time, no time!' tone.

Oh God! A little too much drama.

I tried to say how, I bleed out, the hand veins spontaneously bleed, and are not strong enough to hold a main line. But that was too much so I said, “Needle phobia, PHOBIA: Needle here, Beth go away, I scared hit you.”

This must have got through as she told me she would hit me too as she took kick boxing.

“Y?” I asked, meaning the woman who taught kickboxing for women there. She was surprised but said yes, we bonded, almost decided to bout a little then she decided that my right elbow was the only vein strong enough. Dr. Gungo kept shouting orders and swept out of the curtain area to go get a x-ray machine or something. I asked RN Busy what was up with him. She did an eye roll with "Men. Hurry, Hurry."

Dr. Gungho rushed back, to find out why I wasn't already with an IV in me, and a main line and some blood work and 'push'. He was up in my face and trying to hold me down, while RN Busy kept saying, "I'm not doing anything" while getting the area prepped for a needle. Since they were on either side, I kept doing wrist turns to free my hands and arms from Dr. GungHo, trying not to punch his head several times in a second, as he wouldn’t let me finish a single sentence. The RN was deflected by Linda and during all this the monitor kept making these ‘look at me!’ loud beeps. It did this when I stopped breathing, or flatlined for more than 10 seconds, and I looked over to see waves of erratics with my heart rate over 150 bpm resting (well, not restful), both the lower and upper chambers were erratic.

Linda looked over and saw what we call ‘the jackpot’ when they all come up the same and was saying to herself, "Oh shit, oh shit". Heartrate 145, systolic 145 and diastolic 141. They will say you can’t have the systolic and diastolic that close, but it happens with autonomic failure. My systolic was up at 190’s for a while, which is nose bleed, brain bleed time. I guess it was good to be at the ER after all.

RN Busy was about ready and I said, "Butterfly insert, we have a protocol." And she just gave me 'the gaze'. I said, "At least tell me it will be a small needle." in a pleading, 'just lie to me' voice.

"Well, it won't be as large a needle as it COULD be." She said with an odd glee.

Oh vey, trauma ahead.

When I was brought in, they wheeled me to the wheelchair transfer bed but once I was fully transfered someone realized the heart monitor there was broken. There was much swearing. I was at the edge of the ER room and the intake room, where I sat/lay with my top off, and six main heart monitor 1 inch square leads, along with a dozen thin leads, all leading off to a monitor they hurriedly rolled in. Dr. Gung Ho’s assistant grabbed my oxygen concentrator, and ripped our air canula off in order to reach the intake in the next bay (Geez, are cut backs so bad they steal medical supplies from patients?)

By this time, due to the heat, I looked all over like I was a goth let out in the sun for the first time, bright red burn looking on my arms, my face, and my upper chest. The couldn’t seem to get the ‘can’t sweat’ so Linda broke another break pack and whapped it into my groin. Uh….thanks?

The pain in my chest was crabs with razor claws, demon machine crabs hacking me up from the inside. Bad Demon crabs! And it hurt to breathe. Oh, maybe if they killed the demon crabs, the needle wouldn't be that bad. No, it would be bad, both were bad.

Suddenly Dr. Gungho and most people got yanked as Dr. Cool came in, with my chart. Dr. Cool was not in a panic, nor was he yelling out everything for the ER to hear. He had been going over the notes on my disease and realized that it was not a structure problem, but an electrical problem. He gave me morphine and ativan and the RN Busy, who was yanked was telling the other RN on the other side of the curtain that I was a word that meant both agitated and mentally out there. This pissed off Linda, who was right there. Dr. Gungho later read the chart and apologized to her (or rather he apologized about the way he had treated me, but not saying sorry to me, but Linda).

Dr. Cool had three hopes: 1) medical intervention with drugs (he gave me the morphine to take the edge off the pain so I could talk) 2) IV, and being admitted to figure out later or 3) a chest charge and then start again. A chest charge is when they use the things they zap people with who have died, or flatlined, only I get it while awake. Personally, with the erratic and flattening I was presenting, and the exhaustion, I didn’t think I could hold the charge. Which means the charge would make my heart stop entirely. So this was not a first option for me but a last.

I could, now with the morphine, speak and be understood. Dr. Cool said he would try a non-invasive approach and gave me a different type of beta blockers, not the maximum but combined with what I had taken about triple my dose. He told me that these beta blockers were the ones preferred by pro golfers. I checked and he is right, golfers use them to stop the shaking from adrenaline while putting, as do expert musicians to calm the nerves that might affect performance.

He gave them, not much happened, Nurse Busy came back and I was now able to talk to her and explain how my hands spontaneously bleed, so that was a bad choice for and IV. She kinda freaked about that, which surprised me as it is common in seniors toward the end of life. She kept saying, “Yes,” and “oh right” when I talked about not sweating but put me down as ‘agitated and flushed, with skin dry’ on the chart. I asked her later and she said, “Oh, I just kept saying ‘Yes’ to talking while I do my assessment of patients, it lets me do my job in peace.” - great. She is the kind of RN I hate, as they don’t listen, don’t care, and don’t value any info the person might have.

Dr. Gungho was the same, and treated the patients like they were junk information compared to his all knowing eye. As I was leaving indicated it was the not the beta blockers that fixed me, but the anti-anxiety aspects of them (Linda declared him: asshat!)

Dr. Cool was not only professional, but also, patient as my heart finally, after two hours accepted the new drugs, and stopped the erratics.

“What happens in six hours?” I wanted to know. Or what happens when I don’t have these drugs.

He thought the heart erratics were a flare up, but I should see my GP. Or maybe he couldn't do anything else now they were gone, and either be admitted full time to the hospital or hope for the best. Problem was they ‘flared’ for three days and a half, and since then, I have had over 25% erratics on all of my heart monitor readings (taken several times a day). And my GP is gone until May 5th, Linda says. "But did you want to stay in the hospital?" She asked.

"Hell no."

She says the GP appointment is a long time away, but next week, she will get a boost of medication from the locum.

Dr. Cool was happy that he did it without needles, though I knew coming down that an insulin test and bloodwork was likely. I was happy too. And what was best, was Dr. Cool did it all from the first with all the shouting and background noise with a high tech hearing aid in both ears. Yes, he was hearing impaired, and a better doctor. Maybe it was the lip reading that helped him understand me better, that and the morphine allowing me whole words without groaning.

Nurse Easy came in and was there to give me my ‘in and out’ to get a ‘pure sample’ of urine from my bladder. I asked her if she had gotten one (the 'in and out' catheter). She said she had ‘many times’.

Really?

I asked why exactly, if she didn’t mind telling me (was this a medical or sex thing?). She didn’t understand why it was strange. I said, that anyone who can feel down there and puts that in a lot must have SOME reason, with a raised eyebrow look.

Oh, no she had DONE it to OTHERS many times. Oh, not so great.

After leaving I told Linda, ‘If I had know my vaga was going to be on display for most of the ER staff and walk-by’s, I definitely would have done a clean before leaving the house.” She nodded in agreement. This was not the time any woman would want to have a few bits of wet cheap TP stuck here and there. Due to our Toilet paper scrounging, I had been using the ‘touch wet and half dissolve’ horrid stuff they seem to stock in public restrooms – the ‘half ply’ TP.

I was wheeled out by Linda, covered in medical litter. Linda who falls in the ‘loves to rip band-aids off of others’ camp of the world (sadism my dear, a touch?), got to play ‘strip, hunt and rip’ with the 18 different pieces of bonding leads they had on me once we got home.

At home Linda helped me change into a sports bra then it was up at boxing. There I explained my exercise strategy to the new coach filling in while Ian is gone. It is based on the old Willie Wonka and the Chocolate Factory. There is that girl who gets purple in the face and blows up because she eats the ‘not quite perfected’ everlasting gobstopper. The Coach knew exactly what I meant, he remembered the film well. I said, “I have double mats, and get rolled from push ups to sit up, until my face looks like that level of red/purple” – I did 85 pushups and 135 sit-up, including an additional 20 push ups with my knees above me, on the wheelchair and 30 sit ups with my legs to my knees in the chair, while I lay on the mats. I was trying to sit up, kiss my knees and hold it.

As the coach said, “You get the most extreme core workout of anyone.” Then onto the heavy bags where I did six punch combos at speed, after warming up with 100 jab/cross combos as a southpaw, and 100 as a righty. Then working with my partner, speed and heavy combos until the sweat dripped off, and my hospital tag was whizzing round my wrist.

As strange as this may be to understand, I do what I need to in order to survive, so I can ‘live’ and reach a place where I can dream again, hope again – which isn’t now.
I had waited three days because I hoped the erratics were temporary, but the pain kept getting worse. Then, each day, I needed to go to ER but wanted to get 'just this meeting' done, or 'just that' done. Once I decided it HAD to be, I still waited until Linda woke so that I could get a ride to the ER, with her assistance, in a cab using transport saver coupons I bought two years ago. That way she could stay at home and do the job application. She took me to the E.R. instead, and I had my emergency ER coins for either the cab tip or the parking meters (we used them all on this trip). A ride in the Ambulance would have saved me 40 minutes in filling forms and transport but we would have been billed $60-85. And we didn’t have $60-85.

I wheeled up to boxing because if I don’t sweat and push the blood around I go downhill quickly. The high blood pressure and heart beat of exercising draws the blood from the edema in my legs, and pushing it into the capillaries. After a month without it, my arms and hands are pale to transparent, I am unable to be in any temperature change without passing out (like the ER for example, I was able to stand the warm because I go boxing), and I start bleeding from sores opening up from the Edema.

My tripling my heart meds shows a recorded degeneration of the central autonomic system. I hope they can use that to get me a pace maker or some permanent electrical solution. Yes, exercising after the ER is a risk, waiting to go to the ER is a risk, but without the security of funds, and now, at the tail end of this disease there is nothing left but risks. And I try to make the smart ones that will keep me going as many weeks or months as I can. (oh, and Linda submitted her applications on time that day, as well as the applications due the next day as well)

I hope this weekend to be able to get out to the French Food Festival, but also do a few postcards to all the friends who have been helping me feel not completely alone. It really helps. And I hope you have a great time. Let me know what you are up to, or share some ER story, and I will try to reply to every person. I do all I can, and when I don’t, that happens when I am physically unable to get to the computer. You’re my friends, why wouldn’t I want to share this with y’all.

Pssst!: We took several rolls of the heart monitors showing the erratics with us so we can show the doctor and heart specialist. And I took pictures post boxing of Edema gone bye-bye and later this week, pictures of ‘bloated goat foot’ as a compare contrast, just like show and tell in first grade!

The 101 of pain/strokes, hug a panda, the allure of boobies and Ringo!

Good job!

I thought that if your experience is like my experience then going back to work after a break kind of sucks and no one is very appreciative of what you do. Indeed in most jobs the person with dedication seems to get the least appreciation. But you roll up your sleeves anyway. So though you may not hear it at work because I am not your co-worker or boss, you can hear it from me: Good job (and if your job is staying alive and/or sane and you are reading this, good job on staying alive, but about staying sane….mmmmm, try harder! Wait, that was a note to myself, I really do need to try harder).

Over the break we made up some phrases. One is ‘follow the body’. That means with a rapidly changing condition it is best to listen to what the body is trying to say and work around the body. It beats recovering from having decided days in advance what I will do and then trying to force my body to do it. Another one I am pretty sure I stole is ‘The heart wants what the heart wants’ (that sounds like I stole it, right?). That means, sometimes at the end of the day, unless it is illegal, try to be at peace with your desires, whether sexual or otherwise (oh yeah, that's another post, DESIRE!).

On that note I thought I should put up some yarn porn for the knitters. Yarn is actually so attractive that many species (think kittens and yarn) adore it. In fact, right now, I want to thank whoever got/bought/made me the knitted finger-less hand and wrist warmers. They are striped orange and black with skulls and I am wearing them now like most days to help with the Raynaud’s (all three times I worked on this post!).

See, knitted things are very comfy against the cold, and it is always cold somewhere, that is what knitters tell themselves while stocking up on skeins. Besides, it can literally be done anywhere. The heart wants what it wants, go with it. For example here we have a woman knitting while hanging out in a forge, not the most common knitting venue. Maybe she is having beefcake for breakfast (nudge, nudge, wink) while knitting. She even has a bobbin at her elbow while knitting one of the Men of Steel a scarf, because that is what every blacksmith needs (particularly those with big mustaches!), ya, you betcha, lots of scarves at the forge (???).

As for me, I had the promise and desire to play with my Lincoln logs. They mini-logs with squared off ends much like those logs which Abraham Lincoln made a cabin. I played with them as a child in Surrey, BC. Toys were: paper, my pink rabbit, Light-Bright and Lincoln Logs for toys. Anyway, I actually had bought these Lincoln logs as a gift for someone else. But I thought they were a small set, a bit of nostalgia for them. Except what comes is this giant several feet maple cabinet with brass settings.It turns out I had got some super-duper executive Lincoln Log set which cost more to post than I paid for them, so I kept them. I had great plans with Cheryl, we were going to create the ranch of Bonanza. Actually that was her plan, and I have NO IDEA how she knows the exact outlay of the Ponderosa Ranch (too much summer TV I think!). I didn’t mention that my plan was to build the ranch and then…..BURN IT!!! Woo hoo! I mean, this way I could save Lorne Greene, the great singer of RINGO.

Besides I could also save Micheal Landon, the ‘youngun’ at the Ponderosa Ranch. Okay, now that I look at that in the cold eve of 2:00 a.m. that sounds pretty reasonable but I am sure in the morning there will be some reason I can’t follow my heart and set part of my apartment on fire. Oh wait, it is illegal. See, good thing I had that clause in there, huh?

Instead of more of that brain medication, I think what I really need is some quality time with a hug.

It is cruel and ironic that the one thing I almost never have is human contact, because most contact to me is painful. And I mean physically painful due to the heat of the person or just some sort of reaction where it physically hurts to be touched. A life without touch, without a hug, is kind of sad. I think this is one of the reasons I want a cat badly, because any touch, that physical reminder of love is something I think we all want. And once you have passed that point: the point of accepting in the bones that from now on it is just you, the pain, and the will of how long you can take it, THEN you really want touch. Not that sense of being among people but apart from them. That is loneliness, but also an aspect of so many things, whether it is dying, isolation, fear or pain. Dying is sort of a long to explain place so I’ll talk about that later, but pain is common enough to be universal. Whether it is fever, migraine, broken bone, ripped muscles, pain is pain. Pain makes it hard to think, as there are so many messages coming in.

For me it is as if there is haze plus a cloud of bees stinging me, so feeling that and trying to collect and focus my thoughts to talk is hard, and when someone wants me to repeat things, even harder not to snap, to focus instead.

I am trapped in a burning house of pain and I can't escape much less get out of my point of view to consider, “I think they are just asking for clarification” or “They look like they have had a bad day, I better not make it worse.” Or even sometimes to know where I am, or whether I am on the floor or not. Pain is the baby which will not stop screaming and whether you want to or not it demands your attention. So even trying to speak calmly comes out….intense. And it makes the funny go away, it makes that buffer of social graces go away. Because it just IS.

Yesterday my heart was severely out of order, waking me with erratic heart beats. I had to take 50% more heart medication during the day, which later depressed my heart and respiration until I passed out and stopped breathing (BAD!). Linda got that started only to have the heart go wonky again. It was a stupid cycle which ended up with me stuck in my wheelchair until Linda could come get me.

My day tends to go like this: I have a fuel meter much like a car, only mine is the one which is broken and tells you that you have half a tank and then makes you run out of gas/petrol downwind from a pig farm. So as every day goes on I have less and less to work with and more and more problems: blood pressure, heart rate, respiration – those are the big three: stroke, infarction, suffocation (the bad outcomes). So last night I worked late and there was a delay in the amount of heart medication. That caused erratics at about 25%-33% of heart beats. At 75 beats a minute that is at least 20 or more erratic beats per minute.

That feels like having someone reach into your chest and sqeeze your heart and hold it, for one second, for two seconds, then release it for a beat or two and grab it again (and that is only 10 heart beats). That feeling tends to focus the attention: as the 'hand into the chest squeezing the heart' is bad. Then my heart would have a run of 15-20 erratics so fast that no blood is pumped by the heart, that is how fast it goes, and the chambers are out of synch. That is eye popping stuff. So right now I don’t know whether I am up or down. If I am lucky I can tilt and recline my chair so my airway is clear. Often not. I pass in and out of consciousness. I can’t breath, which means I can’t scream, can’t speak. Problem is that my vascular system gets wonky too and opens or closes a bit at random. It if opens too much, I pass out as there isn’t enough blood going to my brain. But if it closes, then there is so much pressure after a series of erratics, that big huge push of blood, the life preserving measure the heart makes shoots blood up a tiny pipe under enormous pressure. By this time, my left hand and sometimes whole arm is the color of a black grape and shrivelled (as no oxgyen, and sometimes no blood), sometimes just dark purple, and meanwhile that high pressure hose of blood blasts into my brain, into every little capillary. And if just one has a small burst, I get a mini stroke.

A mini stroke can affect memory, or speech, and half or more of my body including making my face droop. That is called a TIA, which means a stroke that where operations (like having a smile that goes up equally) are back working in a few hours to a day. There are actually lots of TIA’s that last longer than a day, but they don’t have a name for those yet (so they call them TIA’s because that sounds better than stroke, doesn’t it?)

“I had a stroke yesterday.” Woah, that is Serious!

BUT “I had a TIA yesterday.”

Response: “Did you get the cinnamon with that, I hear it is pretty good?”

So I was trying, again, after having lost 45 minutes to depressed respiration, to do a little bit of the blog post I wanted to do. To chop it into bits. To be witty and fun. I mean, I am in pain and can’t be touched and so realize I am a bit miserable. Who wants to be known as 'miserable girl'? So I desperately want to be fun, to be funny. But I am having problems and while working I have some erratics and lose time and then I decide, that’s it, I’m finishing this as soon as I get up tomorrow (another story), so I shut everything down with my mouse hand, closing down the computer, the air conditioner. This is when I notice that my left side of my body hasn’t moved. Ah crap! Plus I am only using one eye. I have to transfer out of this chair to get to the bathroom and bed. I try to do that with my good arm but while I can move it a couple feet, I can’t lift the 8-10 lbs of weight to lift up the right side of the wheelchair so I can transfer to my tiny manual wheelchair (waiting for power chair people to change the weight on this). I transfer to go 30 feet to the bathroom. Previously, I have thrown myself, or fallen out the Power chair and tried to drag myself with one arm, but that doesn’t work well. Sigh.

Okay, I need to recline this, particularly if this is going to be a while and I might pee myself, also I need to move my head as near to the baby monitor as possible. That is just a few buttons held down. I start calling: “Linda? Hello, Linda. Linda!” I could try to drive the power chair but since I have bits I can’t feel (feet, an arm, etc), and about one hand I can feel but I can’t always see or stay conscious, or get distracted by pain then that is NOT a good idea (we call that the 'little chunk out of the wall lesson'). So I lie there, calling. I am not oxidizing well and my voice is weak and husky, “Linda, I’m stuck, Linda.” I could push my emergency button for an ambulance, but why? I just need to get to bed. Then the heart hit again and I can hear myself repeating something, “Linda, help, Linda, please, Linda, oh, god” but that is way UP there, where consciousness is slipping away under the blanket of pain.

How long? I don't know but after a time, Linda comes. Sometimes, it is a LONG time, but she comes. And helps me to bed. That is what happens. Linda gives me quiet time in the late evening but I am guessing that is coming to an end, as this risk and incidents increase.

Having something to hold when I am waiting is good. It helps. I think for all forms of pain and lonliness it probably helps. What a better world it would be if we hugged more things (you may love the cactus, but I don’t recommend hugging the cactus). Hug a panda, hug several baby pandas.
The heart wants what the heart wants. There is a solitude which is ‘me’ time, and there is a solitude of longing. Sometimes not even knowing what we are missing until it is filled. Sometimes something that simply cannot be filled but that yearning can be distracted. How about a kitten, don’t you want to hug a kitten, or pet one? I think the kitten in her hair might be a bit much and difficult for combing out later. Still contender for cutest picture EVER.

Now, this is really important for the Seme’s out there who seem, at least in the 1,000 Yaoi stories to simply ignore or grab what they want. Picking up a kitten, a cat to take home and pet is okay. Picking up and taking home a cute guy IN a cat cosplay outfit is NOT okay, well not unless the uke wants that too (oh, and sometimes they really DO!). However attracting someone who is candy to the eye and warmth in the heart with pets (like puppies) is an age old technique.
Okay, a serious warning here for both genders. We all like to look at the boobies, we like to feel the boobie. But whether you are female or male, if that isn't YOUR boobie, just because it is VERY attractive, just because you WANT it, doesn’t mean you can just go get it (and try to remember there is a FACE attached to those boobies!). That is where the ‘no illegal’ comes in. Consensual abduction and groping only please.

On that note, Cheryl, Linda and I went out a few days ago at dusk to see if we could get any squirrel loving. I had one pregnant mother who went straight for the lap and the biggest peanuts (that sounds dirty, but it isn’t). While Cheryl in her cool skull headband attracted about 5 squirrels, all of whom were a bit twitchy. This one is the ‘brave’ one, who seems to be made of rubber (it must be young to be that flexible, you know, like how you used to use your feet as a pillow while reading or read while standing on your head – wait, I actually did that!). We didn’t see many squirrels before the sun went down but soon I will arrive early and they will flood around me. Which brings up the, ‘if you are scared, don’t go into the petting area’ rule. Like not lying to boyfriend/girlfriend you love cats when they scare you, or coming with me if you are terrified of squirrels running up your leg. Because otherwise you will be the person in the back of this picture (I am the one in serenity in the front of the picture).

I think that is it right, a good job, and an explanation of getting stuck at night and then the important stuff, like hug a kitten, or better yet, hug a CAT GIRL, yes, and get all the rabbits and cats to help you do cooking. Now that is a fantasy, but still, if I could get Linda to put on the cat ears I could hug some boobies AND a cat girl at the same time. I only wish there were cats who made food, though they sure know how to turn up when it is around, don’t they?

Well, I did it. I hope you hug in. Next I will try to write the the posts on ‘Normal’, 'Desire part I and II' and ‘The Plan’ – I know part of The Plan involves me cleaning this place up. But that isn’t really fair since I am a person who would have four things out and STILL be yelled out for making a mess. True, you didn’t want to see inside of my desk at school (or locker, yikes!), and I was the person who was doing my homework while the teacher was taking attendance. I can’t help it that pens mysteriously disappear around me, along with keys, important papers that must not be lost, things put ‘away somewhere where I won’t lose it’, combs, prescriptions, DVD’s, books, the top that would go perfectly with this outfit (that is ALWAYS lost, regardless of outfit). It is just my curse.

Have fun, hug, don’t be illegal. Geez, I sound like a parent.