Thursday, December 31, 2009

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.

Monday, December 28, 2009

Take Three: My Xmas, present, future, my worth, my humanity.

Okay. Actually not okay. Ill.

Xmas sucked. Sucked because I was only awake just over seven hours, and of that, I was in the bathroom with cramps for two hours of the time (that was actually my second best time of Xmas, ug). Three hours were spent in seizures and seizure cycles including according to Linda and Cheryl a very large very violent grand mal, which bruised the back of my head for starters.

The other two hours were spent going, “What, do I have to go to bed already? So what if my fingers are blue, I’m just……” (passes out).
Turns out unlike beating yourself up metaphorically or inside, having a grand mal/tonic clonic of extreme flailing causes sprains and strains and bruises and torn muscles and if you are unlucky dislocations. So beating yourself up is not really a metaphor. It does however give a full body workout and burn lots of calories. I decided to see the squirrels, but with the cold it was ill timed and sort of sent me back to start (The seizures and passing out), I did not get $200, I did not get a house, nor was given a utility company.

I did get morose, if that is any help. And a bit of ‘poor pity me’ (if swear words thrown in are ignored). Also I tried yesterday, and today to do the two hour writing of the blog about the grand plan involving my future and the PLAN. But didn’t get that done today either. In fact, I was so ill I slept through/could not move during daylight and missed all picture taking opportunities. Did not get to play with Lincoln Logs. Did not get to organize sock or any other drawer. Did how realize with appointment tomorrow morning I needed to get the postcards done today. Turns out that 20+ postcards took me, er, about 10-12 hours. So that kind of sucked on the time and efficiency scale. They are however postcards I like and wish that I was a lot faster.

But that seems to be the theme of right now, accepting that my hand will hurt really bad if I write for 10 minutes, accepting that I don’t have hand or arm control, accepting that I have, at most, two hours a day in which I can talk to someone like, well, everyone else. I and Linda and Cheryl realized I now speak slower (about 3 to five times slower) and move slower, and just operate slower, and if you come in on real time, I can’t understand you anymore. That I am in a Home, like a Home where they make your food and put you to bed and that is where you live the rest of your life. It is just that thanks to Linda just sucking it up and us finding this years annual rent increase, and the two new meds, that Home I will stay in will be here. Here, for now, and not at some community care center where one worker comes around and gets you on a bedpan and if you are done or not by the time they get back, that is it, because the mattress is waterproof and I would be wearing adult diapers. It isn’t pretty, but it is the truth.

Sadly, my blogging isn’t the truth anymore. Blogging, the ability to blog, is the BEST of me, is me carefully trying to have a good day, and sometimes forcing myself into a fever and illness to finish. The days I have seizures, the days I can’t talk, the days where all I can do is sit with my head in the headrest and watch the DVD on the computer is what is the TRUTH. Those are days I sleep 15 hours, I am on oxygen all the time. I am not articulate, I am not able to understand things, I need assistance. This is the disease. And I am the embodiment of what we fear will happen to us. I am the person who if shown on nightly news makes people turn and say, “If I get like that, get a gun and put me out of my misery.” Because I likely might not have the strength to lift the gun, or hold it steady, I might use the arm support of the chair and the pressure of my temple and then have to struggle with the safety switch. See, that’s reality of even trying to shoot myself, and yeah, it’s going to get worse. But it is MY misery, and it is my joy. I fight every way I know every day and if I give up and give in, then all those 10K’s and all the boxing and everything will mean nothing because I will be dead. And I am not dead. I might be soon, a little sooner than I hoped. But then again, I might not.

The important thing: I’m NOT DEAD YET! And second, hard to blog when I can't move, so will keep blogging as I can. Because even in seizures or like last night when the pain of my back and spine was so bad I locked my hands on the bars of my bed and bit down and screamed, it IS, I AM, and I still live. I still think.

If all people can do is look at the outside, and judge against that, or look at what is lost and judge against that, then yeah, life is sucky. I have days where a gorilla trained in sign language is more articulate and has higher function and mobility than I.

That does not make me lose my humanity. That does not make me an ‘other’ – that which is feared or which we turn from in horror, or stare in facination: fearing that we will feel as they feel, or feel sad or other emotions. So we turn away.

There are 6.2 Billion people on this planet. Of which 6.2 billion people WILL DIE. I am NOT the other, I am not a ‘non-human’, I am perhaps the very aspect which we do not want to think about, do not want to look at our bodies and think of them rotting, flesh peeling off while alive. But hey, I have DVD’s, I have a computer, I have a wheelchair with a headrest. Hooray for modern technology. If what you read scares you, then figure out how to improve my quality of life, because it will be YOUR quality of life. Figure out how to change the society so the rights of the dying are enshrined as well, the quality and dignity of life. I support more disability rights, as while 1 out of 6 people will have a chronic impairment or disability, 6 out of 6 will die. Maybe time to start realizing, that MY bad day, is in a way, YOUR bad day (you just might have it yet).

But I’m not dead yet. Okay. And the postcards are done, and by the time you have read this, some are already posted, the rest on the way.

I go on, slowly, but with purpose. Yes, I may put more energy, more effort, more ‘effort equity’ and ‘work equity’ into ONE postcard or replying to seven emails as you may put into your whole day. Quite probably. That’s my choice. And that’s how much I value each person. Why should I be ashamed of that? Why should THAT make me less than a person?

Okay, take three on the Plan Tomorrow (and every day until I have the strength to do it!)

Friday, December 25, 2009

Arrive at this post a little lost? Or tired? Fatigued and isolated?

‘Alone and ‘Xmas’ or ‘Winter Holiday’ are the same words words for me. That is true for a lot of people. We had just moved to the UK and knew no one, and bought a pot and made mexican chili as we watched the streets empty, as people moved indoors, drove and saw others, and did whatever people do on Xmas. Day after day of silent streets. Each year we thought it would get better, until I gave up and drove around picking up hitchhikers in the snow on the day the taxi’s wouldn’t run.

We thought when we moved back to Canada, things would be different. Being in the same city with dozens of family who don’t invite you, or a spousal work event you are invited to reminds you only that this isn’t your holiday.

I think I am not the only one who feels this way. Yes, it is the time of Japanese oranges. It is the time of snow and winter, and night and solitude and isolation. It is a time when I get dressed up as a form of social resistance. But it is still cold.

So here it is for an eve and a night and a day and an eve and the computer and everyone seems away. They have gone to friends, gone to relatives, gone to vacations. Gone.

That just is what is.

People get depressed when they sit, or lie, during those hours and days leading up to this day knowing there are gatherings they don’t attend, parties uninvited to, family uncaring, or family dreaded. There are people for whom these dark days of the year are a battle when depression and apathy,when sometimes I lean my head against a window and feel the cold, wondering if the window were to shatter and your jugular was severed, would that be good or bad?

Xmas is the time people come back to college and find bodies who no one missed for ten days. It happened just down the road from me.

That just is what it is.

I fight my demons, looking at my future, wanting to write about my future, about ‘a future’ which I can try to have with Cheryl and Linda but that is for tomorrow. For those who come today, it is too much time, too much time alone. Too much computer time to stop those thoughts. Too much. See, if joy is center stage, then the broken, the lonely, the left aside should be up there too, even if in the corners.

Sometimes meeting relatives is worse than being excluded. Inane smiles the same for everyone, statements without meaning, eyes without caring: a mask. And everywhere people mouthed empty words, until I was empty. Xmas asks for self reflection, honesty, openness, so often the strongest mask of all goes up, a mask slightly more complex than the everyday mask. So that in the end, how could love, or any emotion but isolation occur?So yes, totally shut anyone from seeing or reaching you, is that success? 'One more round of drinks please.'

Email me, ask for a virtual postcard, talk about tea and what kind you like, talk about what manga you read, what you don’t, take a chance. Fighting is about taking risks, and I fight, this year like every other, the social and almost physical force that brands me: “See Elizabeth, this is a holiday for humans, not for you.” And “That is why you are alone, because no one cares.” I know people care, I hope those who read here know that I care. But damn, it sure is a hard force to fight against, isn’t it, the holiday blues.

So I’ve come for you, you were lost, and now we are found. You and I are found. Maybe still feeling alone, but two together feeling alone. Not as bad.

I want to be with friends, even if it is silently, even if it is in a world which does not value us so much. It is okay to be silent, it is okay to be a bit down. Tomorrow, body willing, I will write about that, once this day has passed. Once we have sailed away together through it, we can plan together how to meet, face to face (figure out the name of the boat). But no, this does not mean I am signing your marriage application to get into the country (I get some odd spam).

I hope for those who have family and joy and all the rest that you get the joy many do get from this time. I hope that for those like me, who after years of trying, know it is a day to be endured, or one in which your siblings try to make you 14 again, and it all seems like a film on repeat, then come away with us for a while.

Wednesday, December 23, 2009

Triage

In Triage, EMT and Doctors do rapid evaluations and then tag: Green for likely survivors, Yellow for serious but decent chances, and red for a bad time/chance ratio. Not personal, no, except to the person being tagged.

It is hard to leave my skin, so much has it melted into me. All I do to keep it from rotting, or peeling away in strips, I am trapped within these eyes. For others, it is difficult to see me. As for me, what are another few lesions, right, or a seizure, or some aspect of brain degeneration, a slurring? What does it matter to me, who can’t imagine what it would be like to love me. Who can’t remember the world where I walked strong?

Only Linda now is not frightened to touch me, to look me in the eyes, to not find reasons to start triage. Only Linda with the open heart, centered.

In the darkness of 4:00 a.m.

“This isn’t just something in my head is it?”

Linda’s voice is soft, cradling, “No.”

“It isn’t something chronic, something I just live with, is it?”

“No.”

We both wait in the silence while I close my eyes. Some things can’t be said in daylight.

“I’m going to die, aren’t I?”

Her voice is soft but it fills my head, fills the room. “Yeah.”

It seems so much that this life in a hospital bed is a movie set, is an odd dream. This couldn’t be real. The ice pack settles and I realize that tears are running down the sides of my face, around my ears to fall to the pillow. “Yeah.”

From the darkness a hand to hold.

People accept that Triage occurs, they don’t think, they don’t want to think of the person lying on a cart, neck muscles bulging to suck down another breath, trying to swallow but a mouth to dry, the people passing by in a fever haze. They just try to stay conscious, to breathe, not knowing that a red sticker sits on the outside of their chart.
I had another blog post I was going to write, but I couldn’t do it today, too fatigue. How much fatigue? Imagine taking your day, and being awake for 1/3rd of it. And then you only have one tenth of the energy you normally have. And then you only have a tenth of that energy. That’s right, 1/100th the energy, and then you cut that in half. Do you go during break at work for donuts? Now imagine that being something that takes two weeks planning and recovery for 2-4 days.

So I had another blog, about Sakura-con, something light, a little fun. I got the pictures done and loaded into blogger. Then part of my illness struck, and after ‘now’ it was almost two hours later. This simply IS. It is what ‘living in the now if you want to live’ means. This is what scares people.

Tomorrow will be a blog about the future, the hopeful, not the gritty reality of the breath you take to steady yourself before going into a hospital room to see someone.
Last night after being helped to bed. I was drooling a bit, and slurry.

“What if I walked away or destroyed all that I possessed?” I asked Linda, “then, then would I be get to be insane instead of dying?”

How does she look at me so calm, how is it her voice doesn’t change but a tinge of sorrow? “No.”

“No, I knew that. I just had to….” I take that breath to steady myself, “I just….that there was something.”

I drink the bitter cup, a sip at a time.

In the end, still red chart marked, if found breathing, they will call it a ‘miracle’ and try, knowing it is too late. Not knowing of the eternity within and between breaths that only an iron will could have hung on through. That is what people don’t want to see. Because it hurts to watch. They get the choice of turning away, a luxury which, when their turn comes, will be chosen by others also.

They say that because there are no nerves inside the brain, you can’t feel the damage but that’s a lie. But a brain with damage is something, a breath of agony is still a breath.

Triage. I am lucky to have a hand to hold.

Sunday, December 20, 2009

Lesbian vampire girls in corsets suck face, blood, hickeys and drinks

Ahh yes, it was uplifted breasts and desire. Like I said I can do an hour a week or so, and this week, it is corsets and getting dressed up, going out on the town and spreading my wings, literally. Of course, with a recent medical report of anemia I needed to get a transfusion. Who says that it has to be painful? First I put Linda in a thrall of desire. Then I went for the blood and the velvet covered boobies. Linda is doing her, “Nice but I hope you finish this before the drinks get here..” not quite going with the whole moment...yet.

You can see an elderly couple behind us. One can only wonder what they were thinking, luckily I overheard what they were saying (remember I had a fever, and not just blood fever, so I may be a wee off).

Guy: “What IS that girl doing to the other in public?”

Woman: “Oh don’t notice them, those are just a couple of lesbian vampires. Or is it one vampire and her lesbian lover, I can never get that straight.”

Guy: “(Huff) Well, I never, I thought this was a respectable establishment.”

Women: “Oh Bill, get with the Millenium, I mean you didn’t mind the apartment Edith and I kept on the side.”

Guy raising his chin and getting stiff: “Well that was different, I mean it was the war and all…..Oh my twisted druthers, what are they doing now.”

Woman: “Stop staring Bill, is it just a little blood sucking, I don’t see how that is much different than the transfusions I get on Wednesday. They are obviously having a nice night out, just get back to your appetizer and let them have some fun before returning to the coffin."

Earlier I had gotten dressed up including using MAKE UP (Yes, I went lipstick lesbian, want to make an issue of it? On the bed? The floor? How about the in the whirlpool?), giving me the hopefully ‘cherry cordial chocolate kiss’ (nice on the outside but better to lick to the center) look.

But by this time our drinks had arrived. We found this place near us which has rockin’ drinks, big margaritas. They have a Hawaiian margarita (Cheryl had it) which tastes likes the Big Island tastes, the heat giving wafts of sweet pineapple and mango, the sweet honey, and the blue of the tide pools. Yum.

I have to admit that the lust was upon me, lesbian vampire that I am. I mean, earlier I was here, this poster girl for Big Sisters, I mean you would let this nice woman with her necklace of Morticia on Ivory, and black wings take your tween and teen out to an nice uplifting nighttime playtime? We could go walking in cemeteries, or if they were old enough we could watch films like...The Hunger (with David Bowie). But later, overcome with blood and unnamed lusts I have transformed. Not exactly the poster child for Big Sister now.

Linda and I came here earlier, notice the different corset and lace shrug.
We then found about the monster drinks on the weekend and destiny was created. Yes, I happen to be one of those people who find certain drinks to be aphrodisiacs, in a major way. I finally won Linda over to the moment, probably by saying something wildly inappropriate. I have always wanted to do that whole arm sweep to clear the table top and then leaping atop Linda, YUM. What? That is supposed to be done at home? Oh. Well I guess that is why I see it in movies and not often in restaurants. But Linda was giving me a glow. Yes, sex IS in the mind, and the partner, and booze, lots o booze helps too, who needs feeling below the sternum, right?

I think it best we finish with a nice innocent picture. See, this is me just being nice and cute. I do want to point out that for women, with the stress of Xmas and hosting, that masturbation is known to help with migraines, insomnia and stress. So PLEASE do yourself a favor and masturbate this Xmas season. That ends the public service announcement.

The last boxing class was this week until the new year. I have been having problems where I gain weight even though I eat one meal a day and work out like crazy, burn, literally with fever, and have a heart rate which indicates I am jogging. It is driving me crazy. But the lab results from this week might show some of the problem which is that I progressed some more in my anemia, lower Hemocrit, Red Blood Cells as well Hemoglobin PLUS even though on synthroid it looks at least part of me is dead. My free T4, which is what is used to turn food in the blood into energy instead of just storing it as fat, is below the limits, making me functionally hypothyroidism, so we are increasing the synthroid and seeing a doctor.

Beyond drinking alcohol and giving Linda hickeys, we also did postcards. Linda, Cheryl and I got together and got some postcards matched, stickered, stamped and finished, more than I thought as 48 finished postcards have already been posted. So the 38 from last week was even more, though it exhausted us a bit (a lot).

We had some nice donations, like these postcards. And here are pictures of HELL, yes, that is the gateway to Hell, or perhaps some OTHER ancient and famous institution, I can’t remember, but either way that is pretty goth. Also many vampires in this place, except like zombies, they feed on brains.

Also, after I sold the manga on ebay I was able to get some of the pictures and postcards I had found in Hawaii (I got them in the Thanksgiving sale - free shipping!), that includes this picture of the woman doing ‘the dance of the turtle’ – whew, fan me down, I am having that heat issue again. Or as Linda says, “She looks very…uh…fit and LIMBER.” Oh yeah!

“Are you LIMBER?” I asked Linda since she takes all these fitness courses at work and can do these positions with odd names like ‘the plank’ or ‘the seal’ and I thought it time to have a home work out, as it were. Um, yes, postcards, keep the focus! So here is the arctic fox and the dance of the turtle. We also did themes of books and asia/Japan, sometimes we did they together. Without Linda and Cheryl there is no way I would be able to do all the matching, stamping and stickering I do; there wouldn’t be a postcard project. Yes, I do a lot, and I write each one, source, buy and organize postcards, stickers and the rest but also we get great gifts from around the world to the postcard project (I am not the postcard project, I am the horny vampire – so gifts to the postcard project are ones I sort and use but are separate to me). Right now the project is at about 3,480 or so (2000 for the year about).

I had ordered a month or so ago some new year cards from Japan, as during new year people send each other new year greetings in postcards. And the postcards are all stamped with numbers and then on New Year’s Day the TV station reads which numbers wins gifts, from toasters and cell phones, to Playstations, Rice Cookers, and Cars. So not only does it pay to send lots of postcards (and GET lots of postcards) because then someone among you and your friends will win a prize (this is after coming back from a shrine to put in money, clap two/three times and make a prayer, then write a wish on paper and tie it to the nearby tree - New Years Visit). I wish I could do the same (the prizes, feel free to write wishes and tie them to trees), but I am not a national government. But I was able to send out about 18-20 new year postcards, most for this year directly from Japan. However, because they are not ‘franked’ (stamped) by the Japanese Postal System, you can’t win a prize beyond the postcard. Sorry.

And that was my weekend. Cool, yeah?

Thursday, December 17, 2009

Please avoid 'this' phrasae & the Xmas Craft Fair Sannich

Lately, I hear the phrase, “Any day above ground is a good day!” a LOT.

There are people who CAN use it, and people who can’t. Care workers who are irritated because you look and feel like crap cannot use it. They make this statement to basically say, “Shut up and appreciate what you have” which right now is being told to me a lot because it turns out that being ill, and thus moving slow and eating slow, does not fit schedules well. So when they come back to check 20 minutes later and find I am still a shade of grey, they tell me that little gem. I want to grab them, by my teeth if needed and hiss: "And any day you have MY disease, and I get your AB body, and I get to decide when and if you eat, or drink, or get up, or piss or shit, now that is an even BETTER day.” If only they wouldn't get offended when I said or hissed that.

But they WOULD be offended. Why? Because the last thing a person who is getting paid or has dedicated themselves to helping you wants to be reminded is that they themselves, despite the Xmas rush, despite the problems with the toaster, and despite the relatives coming next week are actually DAMN lucky to have a body which can not only take care of itself but others too. But they are. They really are.

But there are people who can use that phrase? They are the people who know that it is a joke, like when two chemo patients are both holding their hair away while vomiting, and one says, “Oh yeah, any day above ground is a GOOD day.” and the other laughs and then they vomit again. Because it is a joke, as there are minutes, hours and days when suffering life is because death choked on us, and spewed us out. It is the kind of sick, horrific joke that a torturer would have on his or her coffee mug and take sips from it between dripping acid on you or hitting you with volts of electricity.

I am not dead yet, but I've sure had some days where it would have been a hell of a lot better for ME to be below ground. But that just isn't how things get played, and I play the long game: the sweet and the slams.
Yet, by the two facts, a) every careworker I have wants to tell me this and b) no care worker wants to touch me, not in days, or weeks – I can tell that I really do look bad.

Oh well, back to my hour outside, at the craft faire on Sunday (supposed to be Saturday but too FUBAR on Saturday). First off, with the Emperor’s March from Star Wars (that music when Darth Vadar came onscreen), here is Eileen Stevens from Golden Maples Farm. I have met her at various fairs and don’t have any pictures of her or her products. Why? I do not show her because she has thrice threatened to sue me, the last time for almost begging her to take a picture of her diabetic jam. Yes, she HAS diabetic jam, but does not advertise it on her webpage, and doesn’t want anyone to know because that could BREAK copyright, so she claims. She sells 110 mg jars while Whimsical Preserves which many people around the Nation, including our household attest to as fine Jam sells 500 mg for the same $5 (Whimsical preserves gives you .25 back for the jar too! – email me and I will email you their contact info, they make to order for diabetic jams, preserves, etc – she has not figured out a way to make diabetic marmalade).

The reason I bother including Golden Maple Farms and Eileen Stevens is that if you look behind Linda in the picture below there is a word display in a stand. That display talks about how the money she makes goes to help ‘disabled children’ ride horses and how she is a member of the BC therapeutic riding Assoc. That last statement is true, however she is not an official fundraiser or fund representative for the BCTRA (or on the board) but uses children with disabilities the same way a pimp also uses human beings – to make money. And in a single conversation with her she threatened to sue me three times, and claimed she had a ‘team’ of lawyers, and that she had sued five people just this year, and that she is registered her trademark, the Pegasus, with the Library of congress for INTERNATIONAL trademark copyright! I said, “I guess you are a big fan of ‘fair usage’ then?” and she kind of went postal. Then she started talking in a tone which made it clear those 'poor cripple', you know, those little people who come and ride her horses like those with “Down’s, Cerebral Palsy, ADHD” and referred to double amputees as ‘so cute bouncing along....’ It became quite clear in talking that she has not a great deal of understanding of the difference between Down’s and Cerebral Palsy and sees both as being automatically extreme developmental impairments (neither is true – as the broadcaster with CP on BBC’s Ouch would tell you, or the professional comedian they interview, or the people with Down’s who work a block away at the Red Cross will explain to you). It didn't seem, after all the years she claimed to do theraputic riding that she knew much about disabilities at all. Indeed, it didn’t seem that those with Down’s were even allowed to ride the therapeutic riding but were ‘allowed’ to brush the horses instead. Nor, since she could not be bothered to slow down to listen to MY slight lisp and often cut me off or didn’t understand me, is it likely she gives dignity to those with CP, Down’s, Spina Bifida and other conditions, which require different movements, and speech. Another of Harriet McBryde (sic) hated 'crip camps' where you are only praised for looking and acting as 'normal' as possible and AB people make all the goals.

BUT, who wants to go to a craft faire, at a time when you WANT to buy a gift, and get the equivalent of a female Jerry Lewis threatening you that if you don’t buy her product that disabled children suffer but if you take a picture she sues you? Not I. So how about this fellow’s work, Claude Duperron, which is amazing pottery! What is Amazing is that it isn’t pottery, it is blown glass. The one on the right is called ‘Changes’, and his glass, called Rhythms Artglass (est. 1981) goes for big money, because it takes a lot of years of training and talent to make it. “Do you mind if I take a picture?” I asked him.

“No,” he said, then added, “But don’t run off home and make the same one!” and we both laughed because the skill to make anything like that has to be earned, over years and years. I still look of it and my mind goes, “Pottery” but it is blown glass. Click HERE for the webpage, I recommend Roots, Salmon River and Marine Gardens (or hit slideshow for them all). Since the smaller vase was $595, and I liked the larger one, I explained to him about the ‘ones’ column, the ‘tens’ column and the ‘hundreds’ column and how I LIKED it, but I was a column short, and it wasn’t the ones column.

Now Eileen honestly did think that she owned the image of the Pegasus even though, as Kenyon and Kenyon of Intellectual Property Law explain in a sort of how to on Fair Use and Trademark: First as a Canadian she has to register her trademark in Quebec, which only grants her 15 years, IF defended. Trademark, unlike copyright, is less enforced and can be take over by another. My picture of Linda with the Golden Maples Farm jam for example IS under copyright (explained here) but to ME. To make it simple, every time you sell on ebay, you take a picture of what you sell because while you are selling a trademarked product, you are not representing yourself AS the owner of the trademark, nor are you stealing the copyright of images they have produced as by taking a picture you have created your OWN copyright image. On this blog, as many people know, my pictures and text, while retaining copyright and pretty much free for single usage (a byline is preferred if possible), but I don’t get hinky! I do however try to buy or take ALL images that show up on the blog (which is why I spend my money for example buying from Japan, digital representation rights of a favorite artist). So, fear not, people will threaten you with lawsuit, such as the Times Colonist organizer did, but much like how Angelina Jolie walking her dog can be shot and reprinted without needing permission; so can my picture of the organizer of Victoria’s largest 10K which has a wheelchair division but no bathrooms at the staging area for people with disabilities.

Ack, enough law, back to fun things like all this TEA. The good and the bad part of all this nice tea was that though I knew that people in the UK, New Zealand, Australia, India and other places would probably LIKE some specialized tea, I did not know what kind to get them. So if you want to send me an email on the sly saying what kind you like, that would be…um…useful, and you might end up with a random gift, oh, say, a tea box sized wrapped gift.

Last faire I bought some gourmet dog and cat treats, and I hoped to find some this faire. I had posted out all of the treats I had bought but I wanted more (it turns out a lot of readers have cats, and dogs!). There was none to be found, but I did find some unique Salsa by Elizabeth Evans (email me for her email or phone number) who is in Chemainus, BC and makes not just Tomato but these other salsas. I tried the cranberry and it did have a good strong cranberry taste, but unless you get the medium or hot, I think it tends to drown out the salsa taste (would be great with turkey burritos though, maybe?). I got the Tomatillo, which are the small green tomatoes that are from mexico. My tongue won’t allow many foods as being too hot (for example Bar-B-Que chips are too ‘hot’ for me to eat now), but this was okay, in the mild, to be mixed in small quantities. And because it WAS hot, I could taste it, and it had a unique taste, both things I don’t get a lot of these days.

Kerry of the Kastawayz Art created these different copper and metal fish, and we used them to talk about the different types of fish and chips (the fish with two eyes up there is Halibut, which has the most mild flavour and is the ‘original’ but now very expensive fish and chips). We both liked Halibut and traded places we get the best. I found out that my favorite place gives out a free set piece of like 2 halibut and fries to any homeless or near homeless person who asks, but only once – so even the homeless or those who are just scraping by can have take out, at least once.

We had gone around to see the different dealers (like Bill Pollard’s hand tied flies for fly fishermen and women) and then bought the stuff at the end. I ended up getting a bit from The Fishery (you can see me here, doing a display model of their product). I really liked the Fishery because they were very friendly, and they were the real deal. We talked about some of the people I knew and who they knew who were on different boats. They have taken the gamble of the fishing life to the next step, as due to conservation, BC salmon fishing in particular has very, very short seasons, literally days, when you fish day and night and hope to catch something. They then, I think in a co-op established 1992, separate the types of salmon (red spring, white spring, sockeye, pink, chum), tuna, oyster, scallops, and had them smoked and unsmoked, in a read to roll tin and a price per can and per case.

Dana at The Fishery helped me a lot as I know that things like certain Tuna are prized by the Japanese at top to eat in sushi, along with different types of Salmon. I wanted to know what to get as presents and she helped me, and let me know what the Japanese really liked. Plus, since presentation is very important in a Japanese gift, she did a wrapping of net (as if these cans were ‘just caught’), as well as with a special bag, even it if was just one can. They are based on SaltSpring Island (another island I taught on – I used to have a thing for teaching on islands), and I recommend them for gifts or good fresh smoked and high quality salmon, Tuna and other sea food (webpage HERE).

So, after my big hour or two out it was back to fever-land. I am free of fever but weak as a kitten, or weaker, I think one of those kittens who get the feet tangled up and falls just knocked me over. I still have a lot of presents to send but I will send those out in the coming weeks when the post stops losing packages. Because a lot of what I am posting I can’t get again, it is unique, or afford to get again, so I want to make sure it gets to you. I will still be sending out postcards and cards and hoping for the best!

I am to sleep, after boxing. It took me three days to write this. Shit. Right now I would love some improvement instead of this five weeks of going down and down and down. I got to teach a student tonight a bit of boxing. Most of what I taught was just to extend the arm, or she will learn to always pull the punch and to actually PUNCH. I started by hitting my head. Then I showed her that no matter how hard she hit, she couldn't move my arms, which I use all the time to support my body. And though she told me she couldn't fight (Who is asking you to fight, I just want you to straighten your arm), and didn't really do this she started to relax. And then started to hit, one, two, three and POW. By the end, we were both smiling and she was hitting ten times harder than before (sorry, she'll be sore tonight). But she is going to take it again. When I teach I have a rule of three - which is 1 thing a week to concentrate one, three at most to mention. So when she straightened her arm, that was good, and I told her. A few other things to mention, but that was it, next week, it can be something else. Better to enjoy the sport and get things right as we go along than not at all. Ian said to Linda, as he left me with her for several rounds that there was nothing I was saying or showing that was wrong (Whew). I like people to enjoy a sport. That is the point of sports, right?

As for me, I am weeping dead white blood cells, a white puss that blocks my vision. I boxed by sound alone tonight, with the speedbag, I wasn't fast enough to hit what I saw so I tried to live in the sound, turn it into numbers and then one and left hand hit - bam of the bag on the back of the wall, right hand hit, bam, left hand, bam, right hand. Linda who knows too well how I think, guessed. Ian didn't.

Once the high wore off, it took me two hours to be able to type AFTER I had a nap. I had a seizure cycle. But I did sweat. And I did teach. The world changed a little. That made me happy.

Because I want a lot more of that. I want to live. Except that it looks like a won't. And it feels and looks like it might be days or weeks right now. And I have no control over that.
There is no 'I will overcome' bullshit. I need the headrest, I need all the assistive devices and more. And I still want to live. Not because 'EVERY day above ground is a good day' but because I want those days so that the world can change a little, and so can I.

I want to live.