Thursday, March 31, 2011

Beth leaves ER and the Hospital: 'make her comfortable'

My heart, keeping me out of commission since Monday had me going to the ER this morning, then not (ending up in the ER anyway) and after seven hours back home to recover.

My heart woke me up this morning, as it shook my body awake, like a plush toy in dogs mouth. That is how it has been, and growing worse in the three weeks since I was last in ER. And I learned some important things but also, looking back, I have found that the other side of Alice’s looking glass is also a looking glass: I worked hard and long to document and bring the evidence of the problems in hopes of having them solve them. Now I realize that instead of that happening, there is a language of code words and questions half answered or pretended not to be heard which create another barrier.

The difference between you and I; the difference between me of a year ago and now is that a year ago, I was trying to get people to take the disease A.A.N. seriously, which I believed would lead to treatment. The difference now is that the ER doctors, the EMT’s, the GP’s, the specialist DO take the disease seriously, which is why they have a hard time looking at me or talking to me.

I am going through the paper-pushing of dying, when I don’t have that ability. I was email the representation agreement (which is required in Victoria, even if you have a Power of Attorney agreement, in order for Linda to make medical decisions). It was because this was not yet signed that I did not have task 2’s, which were taken away because I had night workers so Linda could sleep and Beacon didn’t want them. Now, due to the amount of medication, and the high levels of drugs, opiates, and actions, Beacon wasn’t going to do ANYTHING until we had a representation agreement. We went to the University law clinic and got that started. Then the RN saw me, talked to me, or talked for a bit, then decided she really didn’t want to talk with me at all, and I haven’t seen her since. And the Task 2’s, which HAD to be signed and such in person…we are notified by phone they are approved.

I’m scary. This is because people my age in my condition aren’t around for long. So they are waiting for me to die.

The GP is putting me into the pallative society, and talks with Linda about the ways, the three ways in which deal is likely to occur. The start of these ‘death scenerios’ occur regularly in everyday life. They are about as abstract as ‘Beth will pick up a book, then Beth with start reading.’ Only have, ‘Beth with start with heart autonomic failure which will be followed, likely due to the strain on a weakened system by other systems in a cascade of autonomic failure which leads to death, perhaps from toxicity from liver or kidney failure, or suffocation due to lung failure.’

This morning, my abdomin was rigid, an internal organ was outline pushing through my back, and my heart was not functioning to the level I could not sleep. I decide to go to ER. I decide not to, as I have my support meeting, the other walking and talking dead people.

I go to the support group, first time in three months – only, on months with five Wednesdays, they don’t meet on the last one. It is an empty room, but I chat with a society member. Left alone, I have heart pains, lose consciousness due to overheating and wake, disoriented on the floor. It is some time until I am found.

In the US there are usually EMT’s and EMT-medics, known as the ‘driver’ and the ‘medic’. The paramedics who come to pick me up are a special group called Paramedic Specialist, which are two heart and lung specialist medics who take calls involving heart problems. They have high training skills and put in a line while I am on the floor, better than in the hospital. I think due to the senior citizen, the need for this unit exists, as they take only heart, passing out and heart related problems. They have a monitor on the fly and can see that my ventricles, the two bottom chambers are not working, and yet, enough of a flow is passing through them to keep me conscious. They know about POTS, and they know about progressive central autonomic failure to ‘get it’. They can see that the erratic are causing changes in my breathing due to the pain. The pain is only like you get if you have PAT’s or an AV node or even if you drink WAY too much caffinee as a student and your heart makes that funny feeling (that’s like a flutter), or if you have a goat kick you in the chest (that is a counter AV node beat), or a ‘ug’ which makes you feel like your blood should be flowing and is stuck, and then it goes away. Those are a ‘single’ heart erratic. I used to have 40-80 erratic in a day when they started the heart medicine.

Now I have, during an hour, 300-500 erratics, which I work through, or try to ignore, until they get so bad I pass out, or are too painful to endure, in which case I just lie there as they make my shoulder and breast jump while I gasp for air. That means, 3000-6000 erratic heart beats of different kinds each day.

S, one of the Paramedics was talking to G, explaining about POTS, and also how they had seen someone with a heart like mine. They transported him this morning and he might be going to get a risky operation behind his heart to eliminate the electrical failure. ‘It is not a heart, or beats we see in someone your age (more like double).’ I wanted to know about D, the operation guy. Was it going to cure him?

“No,” S, the senior para finally answers, “It won’t stop the progression.”

‘The progression’, is like, ‘Quality of life’, or ‘no need to worry about coming in anymore’ – it means, no, he is fucked and like you will die, but maybe without as much pain. That is confirmed when they ask if there is anywhere that ‘I’ know might help.

I am in the hallway talking to S. A guy is wheeled by and looking in pain, followed by three police officers. I can hear him being questioned about what drugs he has taken today other than pot.

S. and I are talking about my problem with low blood pressure and if there is an external way to shrink the veins. He can’t think of any, except, as I remember, cocaine. But that has problems too. The guy in the room and the Police don’t realize that later I will be given to take home more drugs than that guy took today. Because that is ‘my’ deemed medical solution.

One advantage of being T, (terminal) is you get to talk about taking cocaine around police officers and no one thinks it is a problem.

The good news is that, one test deemed that the erratics over the last two weeks have NOT structurally damaged my heart. Linda had called the general reception and found that to get quick tests, push for the tests you want, and say them over and over again. We wanted to know if structural damage was occurring, and if I had a Bladder UTI I could not feel.

I gave blood. Linda said I screamed for over a minute, without taking in a breath. I guess that music training paid off: go breath control. All I remember is the pain and purple, and then going funny and almost passing out as he had this huge syringe of musky dark blood, with silt and a layer of clear atop, putting the syringe into the various vials for testing. That and the needle sticking out of my arm, the the line to match was a bit much.

The answer? If I had cancer stage 4 and it was affecting my heart, they would say, ‘You don’t need to come in anymore. The pain is not due to structural damage.” (to heart people and ER people almost all ‘pain’ in the heart is ‘structural’ while the PAT’s and such are merely ‘interpreted as pain by the body, lungs and brain’. So they would say that I need higher doses of pain medication and concentrate on that. Because late stage cancer causes central autonomic failure and there isn’t anything they can do, but give you the lollipop.

And that’s pretty much it. I asked the heart specialist paramedics, I asked the RN’s, the woman who I said, ‘oh, start recording now, here comes a bunch’ and who was the only person to clean up the ‘medical litter’ left on me. No, they had never seen a heart like it, not in thousands or tens of thousands of ER patients.

I didn’t have a UTI, and no current structure problems so I got a Fentynal patch slapped on me, next to the one already there. “How long has it been since it was increased?” The doctor, who was good, knowledgeable and trustworthy asked.

Linda thought it had been two weeks, maybe heading towards three. “Okay, good enough.”

I tried to talk to him about this steady progression up the Fentynal ladder (since what he ‘added’ was more than twice what I started on with Fentynal), as with the expectation I would tak this or soon more during the day, there was going to be a limit reached of the maximum amount of patches soon enough.

“That’s why Fentyrnal was made,” he said, “To take care of pain.” Then he moved onto increasing the opiates for when I sleep, so that the pain doesn’t wake me up.

When people give you morphine so you can talk to them, or give you some Fentynal to cover you until you see your GP in a few days, that means you are needing to ‘be made comfortable’. No big tests to run, no looking out for side issues, just ‘more pain, cover it up’ I don’t have to go to ER because I am in pain due to dying, not because I am someone they can help from dying.

“Except you are still here,” one person said. Yes, I am still here, can still get tartar problems due to tooth brushing, and still need to stabilize all functions possible, but those I can’t, just cover them over, like Wilkie Collins, with vase quantities of laudanum.

Off to sleep now, and adjust to the new pain meds. Neither I or Linda had counted the heart pain from erratics in the pain medication for day or sleeping because, well, it was supposed to get fixed right? Except now it is too far to fix, and there are no nodes to burn out, and no failing of the heart to beat, which could use a pace-maker, just pain, and autonomic failure. It was a very tiring day.

Monday, March 28, 2011

Victoria B.C.’s lost suburb: Fernwood & ‘What do you Do?’

The first question Bill, who was 77 with Cerebral Palsy, asked was ‘What do you DO?’
I had not been asked that question in over a year and a half, and here a disabled person was assuming I DID. His view was the opposite of Health Authorities workers, the medical suppliers, the YMCA/YWCA supervisors and directors, the doctors, specialist and everyone else I had met who assumed disabled meant ‘life without focus and purpose’.

Of the five people I talked to at this indoor market for those who knew all about scraping by, two asked what I DID. Perhaps the reason 79% of Canadian wheelchair users are unemployed is because, in this city where the 10K’s goal is to have 15% of the entire population RUN regardless of age, those who do the hiring, who are part of those who ‘have’ equate ‘crippled’ as ‘hopeless and helpless’

Those who are just getting by know that in the underground and sideline economy, where spending a day to make $10-$30 is okay, disability from mental illness to physical issues don’t stop someone’s gig. And that gig is ‘follow your dream’ which often, when kicked to the curb, frees a person to take the risks of following what they love, and hoping some money comes.

I used the world ‘crippled’ because in a film watched last night the protagonist kept saying, “I don’t fear death when I fight; when I meet the next challenge, but I fear being crippled.” Dying was synonymous with being able to ‘Do’, to keep going after your dream, or as he said, ‘The next mountain to climb”, but being disabled was worse that death: it was a unimaginable living dead-end.

I said to Linda on leaving, “My problem is that I’ve been talking to the wrong Canadians. I had given up, thinking Canadians were apathetic assholes. But I've just be talking to those who don't know what life is like on the edge, and the wrong ones." I laughed, "Thank goodness." I went back to interact to those who have lived in the Tower, and it was a relief. It was a cool swap meet. For the whole time I was at the market, the heat of the room turned my body red, and my speech and movement was impaired. But not a single person finished a sentence or interrupted me. And they didn't do tasks FOR me, like when I struggled to grasp coins in payment. I wanted to know what they did, and they wanted to know what I did. We were equals.

The woman who sold me the Margaret Atwood Handmaid’s Tale and Jeanette Winterson’s Written on the Bodywas heading off to India.

The 14 year old who sold me the goth black top, skulls and cats showed me her favorite hoodie, with a music note and skull, music goth. We bartered. “How about 50 cents?” she asked.

“Will you take a dollar?” I countered. I am either very bad or very good at bargaining. That was a good deal.

I talked with some starting Native art carvers. I had met them at the Xmas fair. They were hanging and had the instruments out, carving while we chatted, doing the dream, even if the money wasn’t there yet.

Bill, who told me he had been told by doctors that he would be dead by the time he was 30 proudly proclaimed he would be 77 years old soon. We both belonged to the Quadriplegic Society and he had the same power chair controls as me, I have the beta version and he has the alpha version. Bill’s CP makes it harder to understand, but he waited for me, and I waited for him. We traded info about hospitals, and rehab, wheelchair fitting, and hobbies. He gave me a sleep shirt with native art on it. I picked up that Bill, like me, liking having a talk. I also noticed that he liked a) talking to women, flirting a little, and 2) looking at their breasts.

Was Bill the 'normal' Jerry Lewis on his telethon fought for? Jerry always talked about the ‘wretched lives’ of those with MDA and Cerebral Palsy, and telling everyone that like Bill was told, and Harriet Johnson: they would die young, young, young. Or rather, they would die UNLESS they live for Jerry (seriously, he states that one boy is 'still alive' because he, Jerry Lewis, took time to go bowling with him: and that like the Babe Ruth story, he is the Babe Ruth, for whom children stay alive because of his promises: "Hero worship, okay? That child stayed alive because of Hero Worship, and that's what I'm doing"). Yet he calls those who are disabled 'half a human' and Bill and I live in a 'Steel Cage' (his term for a wheelchair). When asked , 'Is that how you REALLY feel about them (those with disabilities)?' (an interesting 2 minutes)

His reply, "They can't run with me down the hall can they?", and in the stunned silence of the interviewer he continued, "In TRUTH..aren't they left with half (of being a human)? If there is a degree of measurement, are they whole (humans)?" This is where Jerry Lewis seems to talk about Eugenics. Are those with migraines 9/10th human?

Was Bill at 77, happily enjoying his harem of women to converse with weekly, and yes, maybe loving the breasts too, but happy, and kind, and generous. A success story? Or half a human? To me, Bill was living a good life, and the life he wanted. What was my life? Bill wanted to know. Writing, I told him, but thought later how I didn’t send postcards until I got disabled, indeed, I didn’t reach out much once I got out of the social edges.

Jerry's has a harsh response to criticism from a group who USED to be poster children for his telethon: those shown as dying, as to be pitied. Now these 'Jerry's Children have grown up and say, stop making us out to be things to be pitied, we don't NEED a great white able bodied hope who put himself forward as the only one who cares (even to being nominated for a Nobel Prize). Jerry's response was to threaten to take away their wheelchairs for complaining.
Or as he said in the linked clip, 'what do I care about them (ex-Jerry Lewis Poster chidren)'. He explained to the interviewer, "When 100 million people are watching me and thinking what I do is okay I can't worry or dignify (them)": the now adults, children who were used as poster children for MDA. His stance is that if able body people agree with him that the disabled are 'half a human' and wouldn't survive without Jerry, then he doesn't want to hear from those he is fundraising for, or even used TO fundraise. And if they complain, take away that 'steel imprisonment' in which they live (gee, INDY gets me places, but isn't my prison or my guard). As to being disabled, Jerry told Vanity that if he was, he would 'kill myself'.

In choosing that point of view, or Bill's, I think I'll go with Bill. After all, nice breasts to stare out, and good company isn’t a bad life to live. I guess they would be hunky boytoys for all the hetero gals out there. Basically, to Jerry, I 'Don't' do life, while to Bill and those at the swap meet, I 'Do'.

At the swap meet, still thinking myself as human, I bought gifts; books to send, a goth top for a teen known only by email and laminated posters for other onoline friends.

But I also got gifts: a sleepshirt from Bill, some extra posters, a cloth woven carry bag and a new outlook, a view to look at until I can look out my windows again. Yes, a woman let me look in her old viewmaster which had 3-D mix of superheroes and Canadian ‘wonders’ from spiderman swinging in, to a bucking bronco in the Calgary Stampede. You can see that it totally gave me the ‘WOW!’ factor (and that I am completely overheating, my face and arms bright red).

The woman said she got it, and was going to give it to someone but after seeing my natural reaction (“I did NOT have my mouth open!” I told Linda. She insisted I did, and was like a little kid), she knew that I was the ‘right’ person. And finding that I would keep it by the computer to have something too look ‘outside’, that made her certain. Bought a gift waiting for the right person to come, she sounded like me. We traded names of Blogs, and what we ‘Did’.

It took me three weeks, with my poor health to get there, but it was pretty cool, interesting people, interesting stuff.

The location, in Fernwood was surrounded with what Linda and I call, Ukrainian colors. This is because she come from the prairies where after World War II, groups of people from various countries were given land along the train line, so while she grew up in a town which spoke German (is dry, no alcohol, thus no prom, and had a typical 1938 German school day), there are within 10 miles, a French speaking town, two more French speaking towns twenty minutes away, Old Mennonites (Prussian and Paraguay), Russian, and Ukrainian towns.

From her married in relations and community, Ukrainians like bright colors, BRIGHT colors, so when we saw a house like this, it felt we were right back in the Prairies.

When Linda moved away, her ‘setting up home’ presents fell into two catagories, those that could be used, and those that glowed in the dark, which were put in a separate box. Even now, Linda will say, ‘oh don’t worry, that’s a Ukrainain towel/blanket’. This means, it is wild and not to her taste and not something she is too worried about getting damage as it is functional, vivid colours but functional. Fernwood, is reported to be an area of artists now, and still has lots of old houses, and the kind of old group housing houses, complete with the VW bus in front (one guy turned his car into a hot tub for reasons still unclear) which I remember from the time I lived there after arriving from Gettysburg, PA to go to university.

Our house was a lot like this Edwardian multilevel, which had 12 boarding rooms. I went there because I could afford it (just under 100 for a month) and though not as well painted as this, I was next to the kitchen and the bathroom. In fact, what I was paying for wasn't a room but the pantry off the kitchen, shelves removed. My room was 8 feet by four feet. I had a bed, and a door out. While it was small and unusual, it didn’t seem that odd during daylight when my grandfather inspected it and said, “Are you SURE?” as grandmother said I couldn’t stay with them and this was mixed gender and I could afford it.

It turned out the rumors of drug use was true in Fernwood as the next room over, the guy was growing pot plants, and on shaggy guy who had a live in girl when I arrived, earned his rent by selling magic mushrooms. Perhaps this was the when I had the path split: I COULD have enjoyed free love, candles and drugs (though I don’t remember lesbians or bisexual around, mostly just horny stoned guys). But since I was trying to go to uni, and work a full time job AND get home before the sun set (since that was not the place to wander after dark). Getting food was hard as our communal kitchen was often being used to prepared drugs, including preparing the pot buds, which took over the sink for three days, so no spaghetti! I was oft invited and started running out of excuses to avoid going in the 'vehicle hot tub' which I think didn't know the word 'bleach' and had hosts of STD's (maybe this was one of those places you COULD get herpes from a hot tub?). So it was time to move.

While there are lot of great houses, with lovely colours, and rightly should be heritage houses. But I am not sure if they are registered as Fernwood is one of the ‘lost’ areas of Victoria, not an area anyone thought of 'preserving' despite age. With a town hall, theatre, pub, and center, all within walking distance of town, and on the way to both the jobs at Hillside and the University, Fernwood is fortunate it hasn’t been discovered, bought up and turned into condo developments.

The place is full of character homes as well as parks, little pathways and green spaces, but also, and this keeps the price down, DRUGS, lots of them. I heard from a tenant, after I left the panty ‘room’, a month or two later the house was raided, perhaps due to one tenant there going from house to house looking for drugs when his supply ran out. There are, spaced between the restored and painted Edwardian houses, squats and shooting galleries. Unlike the UK, squatters are not legal nor can then get rights to the house (in the UK, you can even get on a list, or get a list of places that are open for squatting, and if you stay for 10 years, you OWN the building). Here, it is criminal vandalism, not that I haven’t had to squat (live) myself in unheated, no bathroom bits of roof and floors. Thank goodness for university bathrooms and showers and McDonalds, eh?

But one thing that Fernwood does is expand your mind, one way or another. This trip it was trying to navigate the streets, as the one ways, dead ends, and tiny streets is another reason adding lot of cars and condo’s is a bad idea. As Bill put it, “We are in the Center of a Maze!” True enough and often we would be blinded, while lost trying to find the entrance and street by yet another building blowing our limited color scheme and brightness ideas wide open. This is only a fraction of the buildings I took pictures of, or asked Linda to, all within a two square block radius.

Suddenly, I have the urge to get some glow in the dark forest green, eggplant purple and banana yellow and get decorating.

Friday, March 25, 2011

Outdoor wheeling: Tales of the Neighborhood and Beacon Hill Park

When the rare alignment of sun, a ready wheelchair, and me dressed and with energy occur, I head outside even if I have to pay for it with an erratic heart for the next 36 hours.

For clarification, my heart problems which stopped fencing and started wheelchair use was POTS plus autonomic failure (postural hypo--tension) which meant my heart went above 170-240 beats per minute if I was upright even for a minute or two, plus spikes in blood pressure which caused tremors and mini-strokes. Now, I have a collection of upper and lower heart erratics, which are not only painful (for example, if my ventricles, the lower heart, don’t beat while the upper heart does, it is like water filling a balloon to bursting – where bursting is chest cavity bleeding: that is one of the eight to twelve erratics) but indicate that my autonomic system, the part which does the stuff you don’t have to think about, does not have the ability to exert itself AND maintain a steady heart beat for the rest of the day. The rule now is ‘1 day, 1 activity’ whether that is a shower, or an appointment, and even then, I can overexert myself. But I am trying to find boundaries which allow me to do something and go on to live another day.

Last weekend, a late sun through cleared clouds allowed me out to wheel a block or two with Cheryl and show her some of the ‘tales of our neighborhood’. I am sure your neighborhood has local characters and things of interest. Thankfully the guy with the long beard who used to be on the house by the corner and comment on my clothes, ass, and breasts has moved on to where-ever lechers with poor impulse control go. Across from us is a short closed off street which has old houses and this lovely garage, showing that all one need do is stay still long enough and you too can be on of William Hope Hodgson’s Fungus people. It also shows a ‘Canadian VW camper van’. While parts for cars are regularly made on both sides of the US, Canada border (and now that our Canadian dollar is higher, expect Canadian plants to open up to exploit the cheap US labor: “They seem good chaps, by jove, but use some local lingo, and not the Queen’s English.”) in the 60’s, 70’s and 80’s there were particular colours of paint only used on Canadian sold Vehicles. Orange, yellow, and green all had separate shades, and the Canadian colours tended to look like faded photos from the 1950’s. One of the ways I could tell I was back in B.C., Canada from Los Angeles, were the car colours from my childhood everywhere with the yellows, browns, oranges, and odd green cars paint colours unseen south of the border. I have searched and searched but found no reason why Canadians were given different colours.

There are several squirrels that use the old 70’s apartments in the area as good places to store food, since they have large gardens. Here is one black squirrel with a red chest (??) who is busy rearranging the soil. All squirrels seem to have OCD tendencies. With the green spaces taken over, the barn owls, I have not seen for a while, nor the family of raccoons, however, our fence is still part of the squirrel highway and Linda saw a bald eagle sunning a while ago. I have seen a hawk in the park (beacon Hill), and an owl, and there is supposed to be a heron there somewhere. Deer has been seen within four blocks of our apartment.

When we moved back to Victoria, and found out that our apartment rented while in the UK was in the area we wanted (lots of trees, open space, all in walking distance), but had been, until we moved in, a crack den. We looked around as we still wanted this area but more space and privacy. We saw a sign advertising for ‘ladies only’ rooms, and thought it might be a boarding house. This is only a few doors up from our current apartment, while an actual boarding house was round the corner (which I called 'The Addam's House' due to number of Ambulance trips from there), in the heritage house they tore down to build the condos across from us. Once we answered the ad we found that it was not a female renting the room, but an older guy....who liked older women. There was a lack of seperate cooking or bathroom facilities. The rooms were furnished but the male older owner required that women NOT retreat into their rooms and shut the doors but that they must stay in common areas until at least 8:00 pm AND keep the door open to their room. This did not sound like a room for rent but an elderly voyeur who could not get out to peep in windows anymore so hired rooms to ‘ladies’ and required them not to close the door. Too weird, no privacy and we ended up finding our apartment. Five years later, the same sign, like a venus flytrap, has remained up the entire time. It also looks like some of the extra ‘Canada Green car paint’ was sold to do the trim on this house.

This week, another sunny day, the day after showering meant a trip out to Beacon Hill Park. It was very GREEN, and in the open sunny areas, where the mud flats reflected the heat, the Sakura blossoms of this cherry tree had opened.
The other trees were just starting to open.

In the shady grove, you can see two squirrels, a grey and a black on either sides of the tree. The squirrels were out due to the sun but young and skittish, except for the older squirrels, who knew what the sound of a plastic bag meant. The older squirrels however would retreat up a bit into a bush and then slowly gnaw down the peanut.
The flowers on the sun side of the vegetation islands where the squirrels hid and played had opened. Meanwhile, young squirrels mostly stayed in the shade of the grove, where the overhead canopy hid them from crows and owls. Here they leapt and raced like hyperactive younger brothers. This also included getting distracted from peanuts and suddenly getting into fights with each other.

Here for example, one squirrel is stretching out, finally taking the peanut from my hand, and above him you can see a streak of brown in motion. This picture is a still from a short film Linda took and up in the tree, just out of sight, is a black squirrel who took the peanuts and went up there to eat them. When this grey stretched and grabbed the peanut, the black squirrel threw the remaining shell and one of the two peanuts still inside down and nailed the grey, bouncing it off of his head. Oh, the lovely woodland creatures, and people say how they reflect the glory of god. It appears then that god is like a sibling on a long car trip who can’t stand to see anyone but themselves get any treats. I do remember one birthday party very young where the young girl spent most of the time running around trying to make sure none of the children her parents invited (that included me) got to eat or take any of all the lovely food. She ended up licking most of the icing off the cake before being carried out screaming by her parents. Squirrels can be like that.

After an hour, we headed back, and I just now remembered that Linda promised me a butterscotch sundae for going out. She used the ‘oh dear, out of time’ routine to escape ice cream payment then, but I am definitely owed one ice cream from the Beacon Hill Drive in! I like going out as the sun and new growth is full of color and the young kids are brought out in droves, very cute – however, going to the park, even in a wheelchair to take pictures of small children is a good way to end up on the neighborhood watch list, and then I would be a local tale (the bad kind).

In Surrey, B.C., in first grade, the fifth graders, the ‘older’ kids, swore they was a body buried in the woods behind the school. And the one guy most adamant in telling us the tale said that whoever found the body FIRST would get a NEW BIKE. The ‘body behind the school’ is common (we had that in LA at the elementary school there), along with the woman with lots of cats being a witch, but since then I have never heard of a reward for a six year old finding the body. Maybe we were a little TOO starved for entertainment out there (a scar from childhood is from when I hid under the trucks at the plant across the way, raised my head up, cut myself on my crown, felt blood and then ran screaming home, shouting over and over to my mother, “HELP! HELP! I CUT MY HEAD OFF!”

Monday, March 21, 2011

manga sale (at B&N), a video and some postcard pics

I wanted to let you know about a sale going on at Barnes and Noble. It is for in stock graphic novels and manga, and is 4 titles for the price of 3 of them (price taken off in your cart), including the discount, so if you want Ayako, the New York Times recommended title of a story of a family during and through WWII in Japan by the artist Osamu Tezuka, which is $17.97 instead of $27.95, that in your basket with other items saying ‘4 for 3’ will be free, and anything over $25 is free shipping.

PLUS: they take paypal. If you want more than 4 items, like if you want the hardcovers of the Walking Dead (recommended, as I got them from the library), which are $19 instead of $35, but in 6 volumes, you will need to do two transactions of 4 books each. I hope that makes sense.

The sale ENDS on Tuesday March 22/23 at Midnight, so if you would like to try some manga, or graphic novels, ‘capes and cowls’ or indie artists, this is the best sale I have seen.

I could go total crazy in this Barnes and Noble sale, except I can’t. I have about $30

You can see most of the stuff I would like to get in the Amazon Wishlist, most of the manga is in the sale, but some of the indie artists and a lot of the yaoi is not (sadly).

The books I want to get include: The secret notes of Lady Kanako, a new manga which is plotted like Harriet the spy falls in love (interesting no?) and demon Sacred 3 and 4 as those are the cheapest.

I have read vol 1 of Grand Guignol Orchestra - and have to decide about vol. 2, If you want some interesting manga you might like it, it is a France where Paris is safe and the rest is left to towns where zombies roam, and only the grand orchestra can sanctify a place, but that is under the control of the church - so a 'black mass' orchestra, a bunch of 'not official' go from 17th century town to town and offer services, and this is who we follow.

Linda and I have looked at the preview of Flight, which is family friendly and uses everything from oil painting to ink, in the all colour volumes: Flight Volume 2 and Flight Volume 7 are the highest rated, of these lush 400+ page volumes, but pricy at $17 a volume.

Also, I have been trying more indie artists, I liked Hellboy (recommend!), as many were dedicated to Victoria Writers or myths, as Hellboy visited from Baba Yaga to William Hope Hodgen's fungus people (a great victorian horror series of the Sarriso sea), also visiting the Witch of the Sea who tricks the three sisters of Hans Christian Anderson's tale. His new book: The Amazing Screw On Head and other curious objects by Mike Mignola is one I would like to try.

Return to Wonderland by Raven Gregory where all is not right with Alice, as she is grown with her own daughter, but must go back down the hole to wonderland to sort out the malice in her life. Highest rated. And a rare publisher with lush pictures (slightly sexual).

Incognito by Ed Brubaker - highest recommended, what if you were a villain, a genius villain hiding out in witness protection? How would you see the world and what would you be planning? This sounds a bit depressing, but it is an Eisner winner

So, what would you get?

I tried to do 60 more postcards this week, I did 72 postcards to 13 different countries on four continents last week. Thanks to Linda and Cheryl who take them over and help. I had to stop after several hours of heart problems which would have taken to the ER, except now, we have found after consulting the doctor that helps those who are terminal, that there is no point. So I just couldn't make it - I only have to write them. I'm sorry.

This is a beautiful and ugly world. I just wish for the strength and time for more beauty. "Everybody cries, every body bleeds, no one said life is an easy thing"


Sometimes life is painful, is toxic. Sometimes, I don't how to fix my body, my heart, lungs, organs. And if I don't fix it, then I don't get to see the beter world. So I hold on. Because that is all that is.

And talk about books.

P.S. Linda here... if anyone wants to send books to Beth, the mailing address is:
Elizabeth McClung
PO Box 2560
Port Angeles, WA 98362

Thursday, March 17, 2011

Mike Mulligan and his Steam Shovel comes home, plus Graf Zeppelin and Pan Am Clippers

Growing up, I had a strong attachment for the book Mike Mulligan and his Steam Shovel. I had passed many construction sites, some even with the little windows you look through, but I had never seen a steam shovel, and the idea was of glorious wonder, that out there, Marie Anne, the Steam Shovel existed, the way towns where circus’ visited annually existed. I didn't like the building, I liked the story. I read the book growing up in the woods of Surrey, BC, where there was only one paved road, and we would take a trip to visit the one annual circuit carnival, the P&E (Which still comes to Vancouver).

Perhaps I loved the book because I had already had been judged and found wanting, much like the start of the book. For Mike Mulligan each day grew harder as new shovels came and his beloved Marie Anne grew obsolete. So, Mike Mulligan bets all the pay that Marie Anne can build the basement of the new town hill in a single day instead of 100 men. It is attempts at the impossible that make it a favorite. Much like Buck and John in Chapter 6 of London’s Call of the Wild when he rashly bets all he owns and will own that Buck can break a thousand pound sled out of the ice and pull it 100 yards: "As you love me, Buck. As you love me," was what he whispered."

Or perhaps it was just red books, since Ferdinand the Bull was another favorite.

The secret, when you have no money, or very little is to make it count so much more. So, when an overlooked estate auction came up with a collection of Victorian, Edwardian postcards, I found Marie Anne, and for the first time, I sent myself a postcard, one to frame. As you can see it is a early 1906-10 postcard with hand added colour.

The Steam Shovel pictured here in Wyo. is an amazing machine, and it makes me feel that there is that passion and magic of being one of those who sees what can be instead of what is (and kudo's to all those who have restored found steam engines). I don’t need a ‘Mike’ in this postcard, just Marie Anne. When I read this as a child I identified with Mike, and Ferdinand when I read that book, and John when I read call of the wild. This is a type of reading which occurs about 1 in 20 in the population. But today, knowing myself and my life, I see myself not in Mike or John but in Buck, and Marie Anne, the one who will drive themselves beyond limits, drive to destruction for love. For those who have and haven’t read the book, the New German Film darling Werner Hertzog reads Mike Mulligan and his Steam Shovel, adding his interpretation of isolation and forbidden love (well, he was spot on with that one for me).

Perhaps I love the China Clippers and the Zeppelins because they seem to magnificent to have ever existed at all, however brief. It was a world which became small through the magnificant and wonderful: Giant Zeppelins going to the north pole, circling the world and regular service from Berlin to Buenos Aires in three days, Europe to NY in a day instead of five days.

The Graf Zeppelin, the original of the long term and genius designed ocean crossing flying ships. While all know of the Hindenburg (the panel to investigate in the US could never find the exact cause), no other unmodified Zeppelin crashed (Count von Zeppelin’s airships were taken as war booty and modified, some into aircraft carriers (the USA), while the UK tried to use a confiscated Zeppelin to go to India, but in adding more sections to the middle, caused a crash. The LZ-127, created in 1928, operated 590 flights cover over 1 million miles from 1928 to 1937. At 776 feet, it flew at 80 mph, though standard cruising speed was 73 miles per hour, faster than some planes of the period. This is a german unmailed early 1930's postcard of the Graf Zeppelin, who flew continuously, mostly on the Brazil to Germany flights. I found a sell off of Zeppelin postcards, and I put my two dollars in, and for some reason, this one was left behind, likely because it was in German. But the Zeppelins WERE German.

Linda, who read the caption, says the ‘Graf Zeppelin over its home town’ and you can see the Zeppelin hanger with the doors open below in Friedrichshafen. The first flight of the Graf Zeppelin was to the US, as it repeated the transatlantic flight of a Zeppelin in 1924 to deliver it to the US Navy (since all the Allies in WWI wanted the Zeppelins, and there was an odd number of Zeppelins, Count von Zeppelin promised a post war Zeppelin to the US). The Graf Zeppelin began regular service in 1930 to Brazil and Europe with stops in London, Spain, Miami and Berlin (including speedy airmail). It was the ‘age of wonders’.

In 1937, with the Hindenburg disaster, all airships were grounded, and after the US refused to sell the Helium to convert Zeppelins to fire safe travel, the age of one airship gave way to another.

The three Mars 130 Clippers, were specially designed as the largest flying boats by George L Martin Company, planned for the first trans-pacific Oceanic flight. They cost just under half a million each in 1935 and only the Philippines, Hawaii and China Clipper were constructed, while a fourth, the Russia Clipper, used a different and larger design. The public, who saw these constructed and flying felt amazement the way the Space Shuttle was watched in the 80’s/90’s, and called them all the ‘China Clippers’. On November 22, 1935 in hopes to prove that a trans-pacific regular service was possible, a flight took off with 110,000 pieces of airmail headed for Manila. Leaving San Francisco Harbor, where the new bridge was being built, the pilot realized that the M-130 would not clear the bridge, and so flew under it, and completed the take-off and flight. The flight navigator for the historic Nov 22, 1935 was Fred Noonan, who navigated and mapped many of Pan Am’s pacific routes. He wanted to start a navigation school and so worked on a world tour to generate interest. That world tour was with Amelia Earhart and they both disappeared July 2, 1937.

The Philippine Clipper started a round trip passenger service to Hong Kong in 1936. The round trip pacific flights of the three planes ended when put to military service in 1942, like the Zeppelin, the world war changed everything. Here, you can see the Philippine Clipper descending into Hong Kong (with the boat aspect, it was well suited to land where there was lots of water but few runways). This illustration is the front of a menu from the 'Clipper Service', an international experience as Pan Am, while starting in international routes, and a dream of a ‘plane in every airport in the world’, they did not get access to US routes until the 1970’s. But they continued to develop planes, including the ‘strato clipper’ which was double deckered, had a front view port, beds and hot meals, as well as a pressurized cabin from 1949 to 1960. These menu’s were sent to me from Brazil. I wish they were from the ‘Flying Clippers’ described below but I am sure they are later.

I kind of hope they are from the South American Service on the 32 and 44 seat Sikorsky S-42 which first started servicing the South America’s in the 30's. These mini-posters, which I got a while ago to serve as postcards were created to promote the southern routes and createdin the late 30’s (yes, these came from South America too, luckily postcards and mini-stiff posters are cheap to mail). These were known as the ‘Flying Clippers’ and started service a year before the ‘China Clippers’.

All this hearkens back to the days when flying was one of the great adventures, and ‘have you flown’ was something people compared, like other rites of passage. Home, childhood, dreams, drive, adventure, amazement: that is what postcards can remind me – little hand held memories.

Monday, March 14, 2011

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.

Saturday, March 12, 2011

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!