Beth's Birthday Bubbles, Linda's Layoff and Fernwood Flowers

The one constant in life is CHANGE! Change happens, and oft without permission, irritating that, no? Last 8 days I experienced two diaphragm failures, and internal organ shut downs, otherwise known as ‘dying’ (or the start of the ‘organ cascade’ where the body is so weak that the different organs and systems shut down, one after another until there is only the heart and lungs and brain left). You may or may not know, my heart is in constant electrical failure, where there are thousands of erratics each day, including chambers not working, valves leaking, valves leaking backward, and the two lower chambers not beating at all. Nothing can be done about this except mask the pain with painkillers and try not to get too weak, as thankfully the aorta overcompensates by doing superbeats which move the blood even though half the heart has stopped working.

I also take the highest dose of neural pain blocker because if I don’t in 30-36 hours, the drug wears out and the nerves make the muscle spasm, like when you are woken by your leg going into spasm (usually with a scream). Only for me, I have dozens of spasms like that just on a forearm, and hundreds to thousands on my body which makes it so I scream until my vocal cords are stripped and the screaming produces no noise. This is…..unpleasant, and happened twice in the last 8-9 days as the constant emergencies and sleep made day and night mixed up along with the pills.

When the last full body emergency seemed dealt with, and I had rested for a day, I decided that the whole dying had taken way too much of my time and I wanted to see this ‘outside’ that people kept talking about. Friday I had my preplanned escape and the worker helped me dress and get out the door.

The joy of living in Fernwood is that it is the old style mix which we like to think a city should be: old trees with branches meeting atop the street, large green space for kids to set up lemonade stands (seen on weekends near garage sales), and house ranging from Victorian and Edwardian to the smaller 1940’s houses build on the $2000 sailors and solders got after WWII, and the larger 1950’s houses, after a decade of employment and growth. Even weakened, I am able to see all this by wheeling only a block or two in any direction, including two micro parks and a 1950’s aging movie star style ground floor apartment complex. Wheeling along one street, each of the houses are distinctive with colour and character, each one unique. It is a good neighborhood to wheel around.

Summer had arrived or at least started while I was in the hospital bed, and the birds were busy in the trees (what birds are these?). And the gardens had started to come up. This garden with the mix of flowers and colour along with a tree at the end often seen in Japan (the name of the red tree anyone?), cheered me up as I wheeled a block, peering at houses and gardens. I arrived at the local grocery store corner store which happens to be the best flower stop in town.

Linda often gets flowers for me to sit by the computer so though I can’t see out (yes, construction still going, after 38 months) I can see nature. I had my emergency money with me (in case I need to take a taxi home from the hospital if I pass out while wheeling and end up in ER) and bought Linda some Lilies in a pot to give to Linda to celebrate her getting a FULL TIME JOB! We have a north facing apartment and she has a north facing office, and the lilies need bright but no sun, cool and watered. Well, an apartment that has air conditioners on all the time or her job for the city government both fit the bill. Here are her lilies before she takes them into work along with a bouquet of mixed flowers I got for my birthday. Behind the flowers you can see the original Jason Hunt killer whale carving (his uncle did the carving for the queen’s baton for the Olympics, his grandfather did the Beacon Hill totem pole and he carved for the BC Royal Museum), Linda’s previous birthday present (from readers of Screw Bronze and myself).

For my birthday I got an Emily the Strange football t-shirt, with the lucky number 13 on the back.That night, I did emergency exercise for an extended time (an hour plus) until I was dripping sweat, in hopes of getting my body systems stable. The downside is that a) I am in a lot of pain for several days and b) the body retains water and I swell up as my tissues are so fragile now that I tear them doing anything and until I heal, I bloat (ug! Avoid mirrors).

The next day was my party, which started late due to my recovering from the illness and exercise. But I had a good time, and I hope all those who came did as well. Here I am getting my Birthday Cake (red from talking too much and overheating), and wearing a very cool sleep-shirt,showing a cute furry gal holding her plushie, a gift converted into a fav sleep-shirt. I got gifts, cake and messages from lots of great people who wished me happy birthday including a email with a personal recording for my birthday. I can see why people keep this birthday tradition, it isn’t bad at all.

I had been given a bubble wand and after a rest and lunch, I went out and tried it. With a bit of practice I managed to cover much of our building with bubbles, including a few which wandered into second and third floor apartments (as the tenants had the balcony doors wide open during the hockey game). I got a few ‘Wha the?’ faces coming to the window to find out why bubbles were floating by or in. This is me FOCUSED on the bubble making, not complete stoned out of my mind, which is what my facial expression looks like.
Linda was so envious that she wanted to try it, so she got into her ‘action stance’ and started pumping out the bubble. She was quite efficient and concentrating on making more and more bubbles that I had to remind her that this was ‘FUN’ too. She relaxed a little, which got her casual and smiling. It was good afternoon fun.

I also spent an hour or two writing postcards, as I have been able to send postcards again, with a lot of help from Linda and Cheryl, and though it is usually 16 to 35 every two weeks. I am glad to be able to send cheer and return messages to postcards, letters and emails but we are able to try out all the cool new rubber stamps we bought at the sale in April. Postcards shown are from two weeks ago, so it doesn’t ruin the surprise. I know that with my health looking grim for weeks to months, and between emergencies and trips into hospital, doing the five steps for each postcard and the time and energy that takes may seem foolish, as I often lose Monday in recovery from the weekend work on postcards. But as I have a limited time left, and less and less that isn’t just survival, I choose to be friends, to send to friends, to try and be there for people as much as I still can.

The good news of the full time job has been offset by having to wait that while for the first paycheck, which we are still waiting (before rent, I hope!). So while she is working and has new costs, we are still struggling. The job will take care of medications and rent, but the backlog of a year of supplies and things broken down from getting wireless back on the laptop to the urgent need for a NEW upright fan were coming from her weekend and evening job at the heritage building, she was getting great hourly pay, just few hours, but enough to start buying the 15 months of supplies we put on the 'when we get a job' list. Thursday, when she was soon to go into work, she got a call, a sad one from the boss at the heritage society where she already has friends. It seems that though her new job is a 1 year temp position, it is part of the same union as the heritage society has. And even though, as a 'temp', she doesn't get medical coverage, or other 'union' benefits someone at the union decided that if she works on weekends for the heritage society, that would count as 'overtime' since she has a full time job within the union already, and the union doesn't authorize temp overtime. The conclusion: because she was the number one pick for a job 400 people applied for, she lost the part time job which she also was the number one pick.

I asked her, "Do you think we will ever have one of those phone calls were something GOOD happens?"

We gave each other the limp smiles of too long fighting for things only to find yet another 'rule' or something which ends up taking away part of the success we fought for and thought we won (like how our medicare refund at the end of the year was.....$0, because the two most expensive pills were 'disallowed' even though they are both pain pills and there is no other pill which works. We had been told, "Don't worry, it is hard now, but you will get the money back at the end of the year....." Sorry Linda, I know you enjoyed that job.

Sadly, we still will need an upright fan desperately.One of ours broke off the base but we still use it, propped up. All of the fans are 2-3 years old and running on some miracle power, but all three are about as powerful as one new one. We need the fans because 1) if I don’t have a fan blow the air in a specific flow which cools my head, then flows down my body to keep that cool, I over heat (and have strokes in my sleep as my blood pressure goes up while the weaker veins from previous bleeds in the brain leak blood causing another stroke. I can and have gone into heat exhaustion or stroke while sleeping. And 2) if I don’t go that bad, if my head is heated, it overheats a nerve cluster atop the neck which leaves me paralyzed). The fans help up move the air from the air conditioners directly to cool my head and torso Ergo, with summer coming, we will need a new fan, likely two. The Florastor, which was kindly gifted to me, is almost gone, part-way through our last bottle. Florastor, recommended by doctors for those on cipro or without intestinal flora (like me), is the only thing that lets me absorb nutruits at all from my food, which not only includes calories but the B, D, and other critical vitamins (B is what I need to slow the brain damage as B-12 is converted into the coating for nerves to do electrical transmissions, and I am constantly fighting to keep that at the MINIMUM standard. Lower than that, the body ends up destroying nerves in order to have and use this element). So yes, though bought at a drug store, it is very important to living beyond a few weeks.

Linda told me she put what she needs on the Amazon Wish List. This includes the ice cubes to cool the five ‘core’ heat areas of the body and to cool the body inside quickly if I am overheating by giving me drinks as cold as possible. However, she got distracted and obsessed with these ‘brain ice cubes’ which she told me are ‘soo cute’ and ‘cool’ – I can’t tell if this is my goth habits rubbing off on her or her interest in the body. She has as bathrom reading books on body functions, and enlargements of things I don’t want to look at as being in ME while I am going to the bathroom. Maybe she is one of those people who can watch an operation going on while eating dinner, or watch a show on ‘bug in our floors and walls’ while snacking, I don’t know.

Thank you for the gifts of DVD’s/TV shows as both during the two days of pain of doing the ‘sweat exercise’ once a week (missed for almost three weeks due to very ill health) and after surviving lung, heart, bladder, kidney, or other organ failures, I can but sit there, and this helps distract from the dizzy, nausea, and extreme weakness. Thank you for the kindess of this, as I sometimes have very little too look forward to for several days but knowing that ‘if I survive tonight, and sleep for most of tomorrow, when I get up, if I can get help getting set up, I can lie here and watch xxxxxx (insert TV show/film here).”

So hurrah for birthdays, and for flowers in the Fernwood area. Thanks for the fun and also extremely useful gifts like Popcorn (that’s useful and FUN! And it goes with the TV shows). Also a double hurray because I am still at home: until late last night/early this morning, a five day ongoing degeneration meant that I was going to have to go into hospital this morning if my body didn’t start up again….and it did, just at the deadline – so I am very, very happy that I am not in the hospital today. And I made bubbles.

Hurt and Love: a Birthday, Cancer and Lance Armstrong

With lots of systems to fail, my body seems often like an old clunker car: I spend more time in the shop (unconscious) than on the road. But, it is what I have and let’s go with that.

I am celebrating my birthday as and when I can, since right now, I follow the disease and it tells me when to sleep and wake and stuff like that, not the other way around. But I hope to get to a system of waking and sleeping that is stable. In short, I hope for a remission. It is kind of hard to tell if I am going 'downhill' when I have an emergency every other day. And while pain is never boring, constant random emergencies get 'tiresome' and then I end up playing the 'what if' game later (You know, 'what if I could have prevented that?', 'What if I hadn't gotten up a hour early to do postcards', etc).

Being ill: the past several years of my life are not what I would have chosen but are years, experiences and interactions which have given me gifts of understanding. I understand things that I was too dense to perceive other ways. Experience is a hard teacher, even when you WANT to learn. And against popular belief, there are still many for whom experience teaches little (this would be the time for personal introspection on actions and habits repeated when a) knowing the outcome and b) promising self it would not happen again).

Until lately, I never understood all the sacrifices that caregivers make, or those who help and support those who are chronically ill. Now I do. Seeing how hard it is, and how much of a full time wake till sleep job it is, but also learning how Chronic illness can be that way too. Sure, I visited more than most, or did ‘acts of kindness’ but I wasn’t THERE, I didn’t step up and commit the way Linda, Cheryl and others have for me. And while I had Chronic illnesses, since I hid them, and 'passed', I figured that most did the same and that is what Chronic illness was like. Learning the dozens of different impairments, chronic illnesses and how something like IBS can threaten work, social life, personal comfort, mental health and so much more taught me that while I can't walk/wheel in someone else's shoes, I can try and understand and appreciate what it is like to have to do that.

I'm supposed to say I've lived a life without regrets. Which always seemed to me to be an admission that I am too dumb to figure out that I always have more to learn. And becoming Impaired, Chronically and then Degeneratively ill has show me that when it comes to knowing that I don't know, there are grand canyons of personal ignorance I am now aware of. I do have regrets in my life, things I would do over. One of these is that I should have done more. I have tried to change that, as was possible, to be a person who was there and aware, as much as I could, over the last few years. But having a degenerating illness is very distracting to the best of intentions. And I think that is why I sacrificed so much physically for the sending postcards and gifts: because love needed to be tangible, as long as that was humanly possible. Hoping that someone out there thinks about you, and KNOWING because you have the evidence in your hand are very different things. Still, I was not and have not been there all the times I wanted to be. I apologize.

This reminds me, if you have sent a gift (for my birthday), please make sure to let me know who you are (you anon’s too!) and when your birthday comes around. Even if you have done it a previous year, can you try again and remind me, so I can try to get a fresh start on that. Because with a name and birthday, I can at the very least get to writing some thank you notes, and hopefully through scrape and slide, send out gifts till the autumn (I have a calendar already prepared for names and dates).

While my life is solitary, and my memory a bit like having every day put in the blender on 'frappe' (I might have bits of it, but often not the parts I want).
I still think, and watching good films helps that, good series too. I get some from the UK, from Amazon.co.uk, and one advantage of frontal lobe damage is everything isn't just surround sound, it is as if I live it, and I dream of it that night too. So getting good films (like The City of Life and Death, the Chinese film on the rape of Nanking I watched yesterday, then went and read for an hour or two on details I noticed) they help me open up mental pathways, and connect language centers, which slows dementia, and aids thinking. And I think we can all agree that the world needs more thinking in it, because that is part of what makes the world and all the points of view in it so very interesting. Did you know that a book read I can remember longer than a conversation, and a good mentally stimulating movie I remember longer than a bad and cliche' one (though those are good for the days I am 'half there').

So in this thinking, I've had two thoughts. 1) I think 'being there' changes a person, for the better, if they let it. While it isn't always pleasant, and often comes with grief and introspection, when you are THERE, as a friend, or relative, seeing someone daily, nightly, weekly, regularly who has a disease, chronic illness or terminal illness it makes you what we used to call, 'centered' or 'world wise'. To see and be with someone you care about during good times, bad times, and the very, very bad times, all those experiences rushing at you and having to reach past yourself to be there for them, to 'think like (fill in the name' in order to comfort them, it makes you deeper, more able to handle the little annoyances (or less, if you have been up all night getting pills and comfort and just holding a hand with someone).

People don't like change, and often fear it. But I think it will make you stronger, and more sure, because you realize how little you know, how panicked you became in this or that situation during care giving, and yet, you came out the other side. And like how a bad patch in a relationship you fight for takes away that fear that the connection might disappear, so this gives you the knowledge that you are stronger than you thought you might be.

Also, surviving those hard times as a person with a chronic illness or life shortening illness also lets you know how great it feels to have days where you don't worry about being too weak to breathe if you fall asleep. As for me, I've accept as normal life a level far below what I thought was humanly possible, or requiring so much assistance, I used to pity those like me now. Shame on me. Don't pity me, but get to know me first, then you can feel what you want, because you will actually 'see' me, and I you (not just some tragic story told for various reasons).

I'm looking forward for the paperwork and visits for the palliative program to be done. The program sounds just what Linda and I really need right now. It is here because of cancer. That is where the volunteers and staff learned about pain, and how disease looks different with each person, and so the needs are different too. I will owe the thousands of people before me. They were the ones who shaped the palliative program by using it and trained the staff by showing what did and didn't work.

2) We all have a past. People focus so much on the future, and I do too that I forget and assume that the present is all there is. But reading and watching and thinking, something I realize as a writer and a person during this disease process. We may not know our future but we all have a past. I met someone this week who did the 60 km challenge for cancer in Vancouver (because I don’t think Victoria has one). She had cancer, and because of that, she knew what her friend needed when her friend had cancer. Because of her past, she did the 60 km challenge. Her past gave her insight, and motivation and made her a better friend.

Cancer is a disease which make a person feel helpless. The lump they find, or the cyst, or whatever it is they test, just them saying it makes me feel helpless. The waiting to find out makes me feel helpless. Much less finding out your own body cells are changing, and destroying you, that is frustrating and helpless. Cancer gives bad choices, where the 'best' choice is to cut parts of you off, or to be willing take what we are warned our whole life to avoid. Those radiation signs, those toxic signs which are put up as a warning we now have as part of our schedule. They put on a tattoo so they can hit the body with radiation, enough to kill right down to the very cells. Or, they come out with special gloves, carrying a bag of liquid so toxic, they measure it out in drops: Chemo. People use the word like it is just a word, but the smell of it causes many to start vomiting, just in the body memory of what is to come, for many others, the night before is sleepless. You learn to cry and scream in the parking lot, to cry and tell them to do it anyway, becuase while you know these chemicals can kill you, and might, they also might kill those cancer cells first. But it weakens you, and changes you, leaving you fatigued (fatigue, I was told, was when a fire alarm goes off and you are too tired to move - I know that feeling) at best. It gives you tremors, and neuropathy, makes the bones soft, or eats through them, you get thin, and your hair falls out, and eyebrows, and arm hair and sometimes fingernails too, or they stop growing. It is like you are dead, but not dead. We do all this, because living is better than dying, but it sure leaves people feeling helpless, because in the end, the cancer may STILL not die, not enough, and you will die instead.

Lance Armstrong, is perhaps the greatest cyclist who ever lived, certainly the most determined. He is the Winner of the Triple Crown twice, a ride in the Olympics and two arms full of trophies before winning the Tour de France seven times in a row, a record which will likely stand for decades. He is also a man with a past. In 1996 he was diagnosed with testicular cancer which had spread to his brain and lungs.

Lance had operations, chemo, and more operations including on his brain which removed necrosis (dead tissue) and cancer. In 1998 he went into remission and went back to cycling. Two years, 600+ days where there was no end to the tunnel of pain, chemo, operations, specialist, tests, treatments and side effects. But he came out the other side. And then he started to rebuild his body. He spent two years, with a cycle machine and breathing regulator to increase his maximum heart-rate, something considered medically impossible. And from 1999 up to and including 2005 he won the Tour de France, the most grueling and famous of cycle races. Everyone has a past.

In 1997 he founded Lance Armstrong Foundation for Cancer, and in 2006 he ran his first marathon, the NYC marathon, He wanted to run under 3 hours, the qualifying time to run the Boston Marathon. With a pace team, he was still above an average needed to make the three hours for the 26.2 miles when he was at mile marker 21. He said later that compared to the Tour de France, the marathon was “without a doubt the hardest physical thing I have ever done.” Using the television camera that were always watching him in order to motivate him through, to never slow, he pushed the last five miles and finished at 2:59:36. He made it, qualified for the Boston Marathon by 24 seconds and went on to run that too. Lance's finish in NYC raised $600,000 for LiveStrong, the Nike assisted yellow braclet campaign for fundraising for cancer.

On July 23-24 this year Laura Anderson is going to make the 60km walk for women’s cancer. Her page which outlines why she is doing it here. 60km is no small distance. I remember hiking, every day for 8-12 hours, and how after a month, I was really, really happy. Why? Because though I had lost all my toenails, and 20-30 lbs of wieght, I had finally gone father than a car could drive in 12 hours. I think we forget how hard things are sometimes, until we try. 60km is a hard walk. Laura has a lot of training done and a lot of training ahead of her. And it will hurt. And the day after will hurt, and the day after that.

I think the distance, about a marathon and a half (remember, Lance went from his Tour De France training and then trained UP for his marathon – most people train months for a 10K) is supposed to be hard. It is supposed to hurt, because Cancer is big and disruptive and takes determination, dedication and loved ones to get through. The 60km reminds people of that, reminds us what our friends, our family, our loved ones went through during those months, or years with Cancer. Laura is working now to get ready to hurt so people are educated on Cancer, and money is raised for treatment, for early detection machines. I recommend helping her.

I used to run marathons, to run all the time, for several years, the entire time I was first seeing Linda it was running here, round and round the track, and running round my routes and home again. Eventually Linda ran too, and the 10K in Cardiff and the 5K for breast cancer. I know that there are people who want to push things are hard as it is possible, and the majority who do not. I think it is not typical to want to swim or run until you want to vomit, or just lay down, and do that every day. I applaud those who do the 60 km walk, because it is done out of love, a love that is willing to suffer.

I push myself because it is who I am, and when I was 8 or 9, I wanted to know how far a mile was in distance around our house, because my parents wouldn’t let me run around the barrio of LA. And so I would run around and around and around the house, hundreds of times, as a kid, so I could run two or three miles. That was just who I was.

I showed the clip below to my care-worker today, and told her, “I like when they show the parts which are real.” She liked it because of that too, but wondered why people did that. You push yourself hard because something drives you, compels to compete, even with your own expectations. And also because unless you are willing to feel like that, to risk hurting and losing, or hurting so bad, pushing so bad, just to try harder, then competitive sports isn’t for you. But also, none of us know what we are capable of, until we have to. Some illness' are like a race that can never be won, but always be run.

Pain isn’t failure, and losing isn't failure, and quiting isn't, because we can always get up, or decide today to start anew. Only if you don't ever try do you fail. Think about this, the guy who throws up, the threw up twice more that marathon....but he also won it.
Don't count me out of the race either.

Survival (version 2 with editoral notes)

Those around me know without saying it; because that’s the rule, you never say it. Dying. When you are there and I am dying and soon, that night when the fever keeps up and the pain doesn’t go. Those are the nights the body is shaking, and burning, and the heart is crushed and the body shudders when it spasms. Then the lungs need to have someone breath for them as they lay down, for a few minutes; for longer, and longer, it goes on and on. On those nights no one talks about ‘how long’ or doctors or hospitals, and sometimes they leave the room as they can, not watching anymore. Then a corner turns and while I’m as weak as a kitten, it might not be this time, it doesn’t feel like it anymore. So no one talks about dying. Because that cloud has passed…for now.

And so no one ever talks about it. Which means that everything is supposed to be the same day to day. But it isn't. I am lucky if it is the same for six hours.

And for me? When things are bad, it is like trying to live in a burning house; this isn’t a place anyone would want to be. When the body starts failing and rejecting the most basic functions, the physical cost is more than one would think consciousness could accept. The oft prayer: “Oh God, please, please let me pass out, let me go, out, away, I don’t care, but I can’t do this anymore.”

Except somewhere inside the need to keep going is something hold to. ‘Just a bit longer and we’ll sleep and sleep...’ the promise is repeated through the dozens of minutes until the hours pass. When I finally sleep and wake, fever free, but to weak to move, all I want to do is be up. I’m going to live, at least a while longer, and there is so much to do. (Which is why I can never seem to get to bed on time, that and the frontal lobe thing means I have very low will power at the end of the day)

“Pain pills” they say.

“I can’t move my hands, my arms.” Fingers push the pills and the water nozzle into the mouth.

Later you beg, “Please, pain pills.”

Silence.

‘PLEASE.” It is hard to make it sound like a request, and not like a prolonged whimper.

I do not envy Linda as she bears the bad news, and so more silence before, “can't have any more for three hours.”

I make the sound that is half hiccup and half sob. There is me, and the pain and I moan, sometimes I wake myself up with moans. “Anything, please..” I know I sound like a junkie, or a beggar and I don’t care. How can I care what happens outside my skin when it is like this inside it.

And when I can breath okay, and Linda, a week of working done, helps me get chores done. I find out what I’ve missed. I lost a weekend entirely. So no postcards out, but I didn’t receive any mail either. Well, that is what it is. I think of the dozens of people I spent working through the night to make postcards, and cards and package gifts, so that they know I was their friend, as much as that can be without skin contact. And if 90% of those individuals are gone, I miss them. I miss them but I hope they are happy, because oft they didn’t seem so happy the last few times they emailed. I carried as much as I could for them, perhaps it wasn’t enough, or perhaps I wasn’t giving what they wanted. But now I am failing true friends, those who have been there during the bad and worse times. These are the ones I very much want to send a card, a postcard, an email. Forgive my failure . (Looks like a Pity Party to me. I can't tell which bummed me out more, getting no post or being so ill that I haven't been able to get out any postcards or worse, four cards for gifts already picked and waiting, not in two weeks - that would be lax, except it isn't, as just being up to talk sometimes is pushing my health. But the rest, yeah, it is a Pity Party. Oh well, I guess we all have them now and then)

I am so ill I only have the computer on every few days. Often I am in so much pain that I don’t want to write anything in case it comes out full of that pain or angry. (But I got tired and frustrated and that came out too. I think people who twitter or tweet or whatever takes even less time cannot imagine not turning on the computer or checking email for days but it happens, and the more ill I am, the more it happens.)

I can pretend I don't get angry, but I do, though not at Linda so much, still at myself though. But while I get weary at the 'trench work' (the digging and filling trenches which is the chore of staying alive), I don't get angry. On Monday this week, the first day I can sit up, after doctor appointment and four others, I somehow change and am up at the Y doing the boxing workout, harder and harder until I sweat and sweat….I can’t risk not sweating enough. And I think, “52 more times and I might survive a year.” By the time I lay down for the nap afterward the pain in the spine is so bad that I can’t stop moaning, and screaming at times. This is the choice I made in order to live. How can I be angry at that? (Pretty easy. I have to do all this horrid stuff. The director of the Y told me he doesn't do the amount of push-ups I do, nor could he. I do them, or I die, yet I still am viewed as a fat lardy)

I get angry though at those who depend on my sense of honor, trust and word to remain after they break their own. I do not like the computer some days, when this is all it brings me: a world filled with half lived lives. It isn’t the money they make, though struggling from grocery bill to grocery bill it hurts when my parents write Linda (cause she’s ‘nice’) to tell her about the new Wii, and computer and netflix subscription and the two week vacation and how they will be back the day before my birthday. It is that they know I have protected their names, identity, addresses even as they use the blog. It is perfect for control freaks: think you know and judge the other person without ever having to open yourself up. (This is the frustration of a few things or incidents which keep occuring, often never mentioned on the blog, so why do I guilt everyone out? Why can't I be open enough myself to say that I get hurt often, sometimes daily by the insensitivity to some people in regards to my disease, my limitations, but also in expecting me to be the same person I was several years ago. For example, if you email me at 4:00 pm, and I don't email you back by 8:00 pm, I have not 'abandoned' you, nor have I 'rejected', or 'spurned' you. Just stuff like that, which hurts because I end up feeling that I have, that I AM a bad person, only, I was sleeping or ill in bed so later, when I read the emails, THEN I am a bad person)

Risk nothing: that is a half lived life. Or use me as a sealed confessor, then speak or comment in ways opposite to that. Masks are a half lived life: if you spend eight hours a day in a mask, it is half of your life. (I think I would amend that to say that Masks can be a survival tool for a time, but also a safety net which can turn into a silken trap where they are worn for a life, or interchanged so often that will the REAL....whomever please show themselves. I we had known how hard it was, would we have come out of the closet? Thankfully we didn't, as I know we never would have grown. The same true for disability - I ignored those with disabilities because my own were ignored, and I wanted to please the people who did that more than I wanted to accept that as part of my identity and learn about it. That was a bad decision, and one which went on far, far, too long)

Soon there is a birthday, my first. I have had no birthdays because my father decided it was ‘vanity’. And if I got presents or even money from my grandmother or my grandfather, he stood over my while I wrote a note tell them no thank you and he took away and sealed it and gave it to my mother to mail. I have yet no party, as I don't know if I am supposed to plan this or others, but should they come? Let's vote. I don't know what else to do. The last time I had written communication was during one of my parents two month vacations last year (no, not the two cruises back to back, no, not the one in Arizona, the OTHER one) saying that the promise they made some years ago to cover a medical expense, well, some of their US investments weren’t doing that well so I was a luxury they couldn’t afford anymore. I don't know what to write back. But I think they would be a party buzzkill (or a curious attraction?). (Okay, Pity Party Number 2 - Wake up Beth! You essentially have no family, or certainly not one that wants to care about you. The quicker you accept it, the less they will be able to jerk you around. And giving them 'new chances' every two months doesn't help. After all those new chances, they can ask for one if they want one, they are not shy is demanding the other things they want from you.)

So, surviving, or not, at times.

I made it out to vote Nationally. We had an election in Canada...so, nothing changed. I wasn’t registered, but had the documentation. Now I am registered for home visit voting (“though there is federal, provincial and municipal and they each have their own requirements” I was warned. I gave them a look and said, “of COURSE, I am in Canada, right?” Which means if there is a 'back asswards' way of tripling the energy for those who are disabled or elderly, it will exist.)

See, when I have a day when I have two spoons (instead of the 200 most people have in a day) and go to vote and end up being okayed to go vote at booth 184 and then the person at 184 tells me that they don’t care who said what but they weren’t going to let me vote and what was my name again. No, no, I need to start at the beginning and go to the START of registration line (they ignored me asking, ‘Where IS the registration line?’). And the registration line wants to know why this wasn’t taken care of when I showed up by the first person. And more paperwork, and more documents and then back to 184 where my documents are very thoroughly checked. How many spoons is that?

With so little energy, why would I waste anymore on anger? Because I have asked 10 Canadians, all managers what they thought the unemployment rate for Canadians in wheelchairs was. Not one guessed lower than 70%, several guessed it at 90%. When I told them of integration on the trip to Sakura-con and how the person who parked us on the Washington ferry was Deaf, they just stare at me with a ‘Is that legal, shouldn’t someone go and stop them?’ look. I realize then how small we have allowed our minds to be, through a collective bigotry we would rather laugh awkwardly about than change.

When the same person who guessed 90% unemployments then says they are shocked, I ask how they feel about racist jokes, about sexist jokes, and if they have EVER seen someone say to someone telling a person in a wheelchair NOT to do something or pushing an elderly person aside, or saying or hearing someone say, ‘God, if I was like that, Shoot Me!’, and EVER seen or heard anyone do ANYTHING, EVER not just now, but their WHOLE LIFE? So far I haven’t had anyone who has heard someone say: “No.”, "That's offensive", "That's not appropriate."

I have lived a life, working from tween years, for 20 years as a servant. I have tried to serve so that the person being helped didn’t realize why this day, this week, this year was better. Part of that is listening to people, finding out what matters to them, what is important, and what they like: to find out who they are and who they want to be. People send me postcards as gifts. Except that Postcards are my JOB. So that is like me sending people pencils or shoe laces. Because they use them right? And I use postcards.

Sometimes, people ‘get’ it, and the postcards they send for the postcard project, not to me, but to the project, are ‘right’, they are a paper or style not available anywhere else. I got a gift of postcards that are going to make at least 50 children happy. That will make Linda, Cheryl and I happy. (Some people send postcards and don't specially say they are for the project but I assume that. But they also have a relationship with ME.)

Someone came and visited me as I was. “Where you are, there shall I be.” They didn’t have to say they loved me because how they treated me, how they understood without having to be told, how they rested my head told me everything.

I needed socks and there were socks. (I am giving examples of things which happened recently of things which stay in my mind, which has a short and small memory, that say, 'I hear you. And that matters.' I am certain this has happened many times, many, many times over the years. Sometimes though, people will drop off the radar, and that is kinda sad. It is like a friend who won't talk to you and won't see you - that's the limitation of internet friendships)

I am not angry at whoever is reading this, I am sharing with you what it is like when consciously having to grit my teeth to take the pain of lifting my lungs so I can breathe is a day when no one talks of dying because I can do it, and I might be able to do it for months. (or not)

I’m not angry because while I might miss you, if you used to comment or sent back postcards, or post, after two weeks with no letters, in fact, no mail at all last week – so no Easter messages at all. It is not the best reflection of humans. (Sheesh, get over it Elizabeth! Mail is delayed, stuff happens. This is the problem of writing blogs combined with the emotional and mental decay - sometimes the adult writes the blog, sometimes the pouting 8 year old does. Though I think for all of us, a pouty 8 year old is not far beneath the surface on at least a few subjects, this it seems is one of mine)

I spent 20 years, silently making sure you were okay. (not eloquent) I spent 30 plus years being the obedient child, the sibling who wanted only reciprocal love and if I was thought of at all, it was how great it was that I kept doing all that I did. And after I ill, I tried, in many ways to be there. Really, I did. (I think there is a frustration that people assume that well, of COURSE, Elizabeth would push through and push on. And perhaps the guilt of not being able to put up photos of Sakura-con quickly is in there, only because it seemed several didn't want the pictures, they wanted more or different pictures. So the one nice time away became something I felt I couldn't talk about or show without criticism. And then there is the challenge of saying how I feel when often I find criticism painful. And even more because I share pretty bluntly and openly, but those who find problems are not coming out with examples from their own lives, just finding fault with how I am living or expressing mine. But then, if I want people to read with interest, I should be an interesting writer. I don't know how much a palliative and brain damaged writer CAN be a 'objective professional' - should they whole 'anything goes' idea of critical response be applied to someone who has brain damage, or who has such a limited scope of life view? It is an interesting question).

And now, I am several months PAST where people disappear from the public's view, long past any 'last lecture' or where they are told to spend some time with family before it is ‘too late’. Some people don’t get how I can do things, still go to the Y, ask how I am, and when I say I am palliative, they get all puzzled, or frustrated or angry because how can I be there? Except those who know me, who see me and who either don’t talk about it, or say, ‘Today, you’re looking better.’

So, I am going to take some time, of the time I have left and be selfish. Which is why I guess talking to the four adults sending me in a round robin to get to vote gets me upset.

For those who wonder: those actions you take, the letters you write to me, to anyone who is ill, the drawings you send, the parts of yourself and the listening you give to those who are ill, and the emails, they are ALL appreciated. And when you don’t hear anything back, then listen to me now becuase here is your 'thank you', because the ones where you don’t hear anything back are often the most valuable. If you knew how precious you might be ashamed. I know I was when someone’s widow would say, “Elizabeth? Elizabeth McClung? I know you.”

“No, I don’t think so.”

“Yes, you wrote a letter. He kept it with him, even at the hospital he kept it with him.”

And I think of something that I wrote, finishing early so I could go off to do ‘something fun’ and all I can feel is the overwhelming feeling of shame. It could have been so much more, it SHOULD have been so much more. “I’m glad he liked it.” I say and try to escape since my earnest desire to burn a hole through the floor has failed.

Paula asked me in the comments ‘What do you want for your birthday’ and I thought, “I guess I am supposed to say, ‘Peace on earth’, or is that just for beauty contests?” It is my first birthday after all. I don’t know what I am supposed to do or want. Things are actually starting to look a little better for our life, and I know how many people in Japan and elsewhere have needs. I am saving for a piece of art which I don’t know if I can show since without much of a frontal lobe delay I am more vulnerable to being laughed at (oh, I checked, I can't reproduce without permission and I don't have it yet).

DVD sets of TV series or seasons are coming soon, so probably Amazon.co.uk gift certificates (they are REMAKING the series, The Killing, the amazing hit show from Denmark so it is set in Seattle with American Actors! This however was nothing as strange as finding parts of ‘Little Britain’ REMADE with American Actors for the American ‘Little Britain’ – changing the settings, the backstory, the situations, the character and then the complaint is, “I don’t get this British Humor.” – British Humor? What possible UK aspect is left?) and Amazon.com certificates are a good gift as Linda and I are watching Burn Notice as and when we can (apparently for the second time – a plus side effect of temporal lobe damage), we are half done season 3, so the new one is up next. We don’t want Dexter or Chuck. But I am looking forward to some TV with ZIP, with something as I am pretty much out of things to watch when the pain is bad. And lately it has been bad (they upped my pain meds before the Sakura-con trip then another 75% up after the trip along with a doubling of the breakthrough medicine). That takes care of 50% or so, sometimes 30-40% of my pain. I dreamt this evening that I was having my thumb severed from my body, and waking up to find it was still attached, and that I haven’t had to snap a dislocated jaw back in wasn’t even relief, it was just facts.

As the LCN said after seeing the burns on my body from the patches, which burn through the skin down to membrane, and what it was in Feb and is now he made a face that was like he was going to gag up his lunch. “That’s insane!” I totally agreed with him. However I don't think sanity isn't the best way to deal with where I am right now. It is survival, and if I can keep doing it, then I live. And living to me is better than the alternative, and the phrase ‘hopefully a better quality of life’ gets a ‘Hell Ya!’ out of me (at least mentally on the bad days). Oh, stuff on wish list is good too, I think, or if you know me, you listen to me, then your mind is far more than mine can clever be.

The DVD sets I hope for include:
The Inside Complete Series (not out – is there a way to get episodes? The women who wrote first season of DollHouse did this)
Royal Pains Season 2 (May 17th - $27 on Amazon)
The Killing (from Amazon.co.uk – Danish Version)
Waking The Dead Season 9 (From Amazon UK – out now)
Dark Skies (is this good? It is from the 1990’s, I think)
Stargate Universe season 2 (May 31)
Burn Notice 4 (June 4th)
White Collar season 2 (June 7th)
Rookie Blue (May 31st – is this good?)
Swedish Fish (now – they really are fish, just gummie and yummie)
George Gently Season 3

DVD sets I don’t have a clue about: Nikita (didn’t this get done already? Twice?), Haven Season 1, Glades Season 1, Covert Affairs Season 1, Rizzoli and Isles (this looks interesting!)

DVD sets to which I say, ‘thanks but no thanks’: The Big C (Will they whore terminal diseases – don’t they always? “We don't see the fear, the depression, the disbelief, nor are we let in on the details of her diagnosis or her treatment options, all the minutiae that terminal patients face.”), Supernatural season 6 (Once we have the ‘quest for God’ or ‘Quest for Devil’ I watch season 2 again and enjoy the TV movie of the week), Chuck (I liked him as a nerd, with nerd friends, we both ditched the last season), Glee season anything (I tried but could only watch 1 episode at a time, the lying by the characters was that bad – I don’t like lying and I sort of hated everyone by episode 8 – my 4th try at watching season 1). Mad Men season any (the longing of men for the ‘good ole days’ of doing bad things, drinking, smoking, littering and treating women like pets’)

Back to getting to sleep on time, getting up, and getting the things done that need getting done. I do hope to have energy for sorting photos soon. I want to share more of my life with you. And I will keep trying.

For K, for M, for V, for J, and Linda and all my friends because Cancer gives equal opportunity, Laura is doing the 60 km walk to fundraise for specific items like two mobile mammogram machines (10% of those with Breast Cancer are men – one man family knows had his ribs removed and a kevlar mesh to keep his insides..inside), and financial assistance for families. Her descriptions are honest and real. It isn’t just the cancer, but the treatment, the surgeries, the unknown complications, the tests which hound you with terror. Having had my gums recede the last few weeks and a tooth loosen due to jaw clamping in sleep, I could relate and wish this on absolutely no one: “She was in so much pain that she clenched her teeth so hard that she cracked two of them and now has to go in for crowns.”…” losing so much weight the little fat pads in her feet disappeared so it hurt to walk, her bones poking out and her clothes hanging off her because it hurts too much to eat and what she does manage to eat she can't keep down.” The link to her fundraising page is here.

The big C means more to me now, inside the system. My GP is a terminal C doctor, my hospital treatment, my prognosis, my developments what they can guess or figure out is because of those who have had lung cancer, heart cancer or other cancers which at the end affect autonomic failure. The way pain is understood at this level and the kind of pain treatment I get is thanks to the tens to hundreds of thousands who died from Cancer. The way hospice, respite and care palliative home care will occur is thanks to the voices and advocating of those with Cancer and the families. I wheel on the bones of the bodies who have gone before me.

Thanks is inadequate but a place to start. I will think if there is some focused fundraising I can do, a sort of 25% of sales of items doe Laura’s walk. I am open to ideas.

For those who are hanging in there: I get out of bed every day. And every day that is an act of will. Like so much. I say that because I know that can be true for so many lives. This is the price we pay so we may experience the unknowns of tomorrow: having things like a loved one braid your hair, or sharing a song.

Steam Boat Night~!

Yesterday was my best friend's birthday. Thomaz Chee Chee (just joking) has officially joined the 2D club! Yep! He is 20 years old now! So to celebrate we all went out for steamboat with a couple of guys from my old condo with whom we did alot of crazy stuffs.

Since I've been to Tasty Pot Steamboat a couple of times, decided to go there again.

 

Yep! That's the place!! It's kinda cheap for how it looks though. RM26.80 per person for buffet steamboat and then plus drinks and all about 30 bucks per person? LOL I dunno... XD

The do have alot of choices of food. Though I wasn't really a fan of steamboat, I really wouldn't mind to go here and eat! It's cheap and nice!!! Plus I can eat as much I want until I wanna explode also still same price! XD

 

 

 

 

 

Well steamboat is not the only thing they have over there! They also have.......

 

Looking at all this pics am hungry already!! *drools and pat pat tummy* Gosh the food is really really awesome over here!!! Those who haven't been there, fast fast go!!!

At night this place could really be super crazy pack! Like last night it was really really packed! Though 1 of my friend was supose to upload all the pics, which he obviously didn't.... I had to steal these pics from Tastypot Steamboat Restaurant's Facebook site! *smack head*

The address for this place is :

No 9 jalan PJS 8/18 Dataran Mentari Bandar Sunway. 

2nd branch: D1-17-G, Jalan Multimedia 7/AJ,

CityPark,i-city,40000 Shah Alam

Petaling Jaya, Malaysia, 46150

 

Contact : 03-56301282

 

Mon - Sun : 16:00 - 01:00

 

So basically they are open 7 days a week! How awesome is that? Though they are open until only 1am, it's still good enough, no?

LOL!!! Still waiting for my friend to upload the pics online and once he does, would put it in!! Well for that night we had fun as after food went for Left for Dead 2 : Versus mode!! That was seriously Dope!!! More stuffs coming up soon guys!!

With next weekend Sunday planning of Sunway Lagoon waterpark coming up, alot of things are happening this next week!! Those who wanna join us for the theme park, you can contact me here!! =)

 

My weekend and why Linda calls me 'Sheldon'

We had a pretty good weekend, until the third hour of it.

I WAS going for Korean BBQ that evening(except they were on vacation for a week), so while deciding we went to the local markets. The natural soap and carver was there with new products, including both mini-watermelon and apricots.
Last year a potter had been making skeleton cookie jars but had moved on to mugs as well as fossilized dinosaur pattern mugs. Cool. I was like, “Where’s the lid?” because Linda had hinted at a skeleton cookie jar. No lid.

There is an inner court of stalls, then an outer court with the foods. Inside there is a guy singing busking songs and outside there was a woman with a Celtic ‘Lap Harp’, I think it is 42 strings. We bought some cheese at the Award Winning Qualicum Cheese Factory we had visited before (now they come to us – score!). They were Finalists in the Brie category for all of Canada (Brie is the one where the stuff that normally tells you your bread, clothes, or shoes have been hanging around to long covers cheese and this makes it ‘strong’ – yeah, kind of like a men’s locker room I’m guessing. I don’t do ‘strong’ cheeses, sorry).

Off to the side there is even a play area for children which even has its own Zip Line. Pretty cool. This guy was using it to Zip back and forth.

What is amazing is he was a least a foot shorter than being able to reach the holding ring (and thus probably years too young for those who planned what age should use it – but does that ever stop a kid?). He was climbing up on bolts and jumping to grab the ring, and then would ride it across every time he caught it.

Here is a picture of the corner of the market, if you don’t get the irony, then it is just a nice tree, blooming. We left and went to the James Bay market afterward. Making a brief stop at home. While Linda went inside, I talked to the animals.
It was a sunny and warm day and people were taking out their collectable vehicles for the first big rides of the year. I think this is a Bentley beside us, I love the tires.

In James Bay, Whimsical Jam was there, and we talked to them and bought some peach jam for Linda. Then I talked to the potter who last year would not use the Amazing blue in her pottery because she was pregnant now had her baby and was using blue again! And more was going to be on display next week, this week just these two. This, according to Linda is an oil and vinegar set. While to me it is clearly perfect for making flambe’! Not enough flambe’ in this world: flambe’ waffles in the morning, flambe’ omlettes, flambe’ open beef sandwich….the ideas are endless. Next week they are having a gallery showing of the artist of James Bay…..up at least 20 stairs. DARN.

Here is the artist who blows glass and makes tidepools which Linda bought. This year he was making mini stars and Galaxy’s inside of glass balls. They ranged from $90-$150 but were amazing to look at. He also created octopus as well as these jellyfish necklaces (we are very sea themed here on the west coast island).
As for me, I found a left over Anarchy necklace. It had been left over because an older woman wanted it because she was named ANN, the owner explained before final sale that the symbol had slight other meanings besides an A. Her loss was my gain. I told the woman watching the stall for the glass blower that Anarchy is not about bad or violence, it merely supports the removal or collapse of a previous system so rapid change, for good or ill, rises in place (we hope for good, oddly, we keep getting ill).

She said, "Wha? Yeah, sure." I got it for $10 (you can see it here with my cooling ‘kerchief and a pack of ice down my back). Ah, it all comes together, the red hair, the Anarchy symbol, now I just need a big flag and a line of police to charge in my wheelchair!
Sadly the heat did me in at this point and with the fever, nausea in extreme, shaking, and the desire to have my skin turn inside out as well as my body getting hotter and hotter, I had full blown heat stroke as the dizziness and confusion increased. And voided my entire intestines. Despite the ‘warnings’ to go to a hospital (yeah!), I was wheeled to bed, lifted in, iced, and lay alternating mumbling things and shivering before sleeping. The fever broke nine hours later. The good news is that I did NOT going into a coma! The bad news is I didn’t go out for dinner, and having 2 hours out from 11-1 in May means full heat stroke, then will I be able to leave this apartment until autumn? I hope so. So, got the 1 in 3 bad disaster weekend out of the way.

Getting up, I worked with Cheryl and Linda into the WEE hours doing postcards, 54 in all, down the list, making sure that people who might have been missed for a while were getting one. I hope they come at the right time, since I have been hearing people getting the ‘lurgy’ or varients which go into the lungs right away all over the country, so I hope a postcard gets to them when they are down.

In the evening Linda and I have been renting ‘The Big Bang Theory’ which is sort of like watching some guys I knew at uni. But during one episode, at one point, returning from a Renaissance Faire, Sheldon (ASD and self absorbed brainiac!) was complaining about the inaccuracies at the Faire. However his complaints were so egregiously wrong I had to pause the show to explain to Linda about disregarding those INACCURATE complaints because the period Sheldon was talking about was late middle ages of central Europe not the explosive intellectual/artistic explosion in Florence. That is what spread not only exchanged through the emerging postal system which carried the challenges of mathematics, puzzles of art perspective, and treatises but the education centers of University of Paris, Oxford and others, quoting from the excellent biography of Layola (founder of the Jesuits) who went to Paris.

I stopped at this point because Linda was laughing so hard that she was crying, and couldn’t seem to stop laughing, as she would look at me and say, “Yes Sheldon” and then start laughing again.

I tried to remain aloof and simply restarted the show, but soon had to make a correction of late middle English pronunciation which the show had wrong and set off Linda into hysterics again.

Sigh.

She giggled constant throughout but did turn to me at the end, when the main character broke up with the wonderful Leslie Winkle ("Come for the boobs, stay for the brains") due to what theory of physics they would teach their children. Leslie believed in Quantum and Sheldon (and the main character) believed in String. I explained (briefly) the step from the grandfather Newton to father Einstein and his theories. My own observation is that Winkle was right because Quantum physics is about TESTS and results and working equations from that to find the laws of this universe, while string theory cannot BE tested.

Life impacts theory and vice versa, so the pragmatic aspects that women have to deal with and compromise about not just historically but as part of life, makes Quantum is an extension of that. Because one can have an idea but when a single aspect of data (like recent finding of the fact that stem cells grow differently in space – hence the idea of colonies in space suddenly is less attractive to women who REALLY don’t want to see what the first child would be like!) requires a change in universe constants and our perspective. String Theory, like male masturbation, has endless variety and playing with itself but has no tangible effects or ability to test (and the idea that you can get paid to do this, oddly enough, attracts a high percentage of men to that field) – while Quantum, you get it wrong, and instead of a baby, you get cancer.

Now most of the time when we watch Big Bang Theory I point out to her that while I have OCD, a cleanness issue, space issues, tend to overthink the optimal, I keep saying, “I don’t do THAT” while she giggles at various places.

We work at getting by. We work at contact, and intimacy of space despite the pain (I fell twice yesterday, the second time hurting my elbow, hip and leg badly). Or I do, because the pain is what makes me something I would not want to be. I want to put defensive, cranky, and pain hazed interpreted Elizabeth on the shelf and let the vulnerable Elizabeth’s back out (problem is they need someone to catch them emotionally: in order to remain open and vulnerable, it creates fragility). So with my birthday midweek, I live in a future I hardly believe, of years I can’t remember. And the knowledge of the pain I live but the pain I have caused others. I know individuals who believe I deserve this, and it is my fear that Linda was chosen, or persecuted once again with a layoff BECAUSE I exist, because I am ill, and fear that deep down she wants to yell, ‘It is your fault!’, and then she's gone. She won't, because her daily acts of thoughtful kind love after years of hard caregiving should tell me otherwise. It tells me she cares. My fears keep whispering though.

Canada particularly always seeks to find whose fault it is, or rather to avoid taking responsibility and end up at fault. So to get ill, I was told, it must be genetic. It must be because I have displeased God. It is my sins come back to haunt me, etc. I live in a brain where time has stopped that day part of it died and yet I must face things every time I wake up. The day after the postcards I went for dental cleaning (Linda knew this was included and oddly did not tell me, due to the 'worry factor'), exam AND plates to avoid cracks and chipping from pain teeth clenching and seizures. The cleaning took 90 minutes. I talked to the person doing the scaling and cleaning and asked her to ‘kill it all, every little bit’, and then, suctioning blood, asked her to go back and do the back wisdom teeth as well as other areas AGAIN. There was a LOT of blood.

Linda was reading a magazine when the tech said, “um, is she…” and Linda looked and said, “Yeah, she’s passed out.”

“Does this happen a lot?”

“Oh yeah,” Linda assured her, “No worries!” I passed out twice, had a seizure and a TIA. The pain was, well, I kept telling myself, “hang on, hang on…”

A close relation was having their cleaning at the same time and talked to Linda was I was out (seizure or TIA I think), they saw me come to, use the arm I could use to raise is the air and rasp out, “Kill, kill, kill!” and back in with the tools the Tech went. The relation said, “It just isn’t fair how she gets to have fun doing this!”

Ah….er?

At the end, I had no cavities, no problems and declared myself ‘ready for toffee!’ That is, once I finished keeping the fluoride in my mouth for 30 minutes.

And thus goes my birthday week so far. No, not the greatest, I will admit.

I’d love to hear how your weekend went. And if it was a ‘SPLAT’ at least you know you have company. Next weekend we are hoping to get out to the highland games, which are here in town. I have always wanted to do the dancing with the really expensive leather shoes with lacing round the ankles (they cost about $110, I checked). Plus I can practice a bagpipe for at least 2-3 minutes (how long can it take to learn anyway?) without Linda noticing.Because I have a plan for LINDA’s birthday. I wish to surprise her with my rendition of ‘Happy Birthday to You’ on the bagpipes. I haven’t actually played them, as such, but I have read a book and am pretty up on the theory (it is hard to practice the bagpipes in an apartment and end up surprising her when the time comes, you know what I mean?). So she has that to look forward to.

Next post, I will be writing about Birthday ‘wishes’ (my number one wish is ‘one more year’ – since Linda says that 'NO, I am not actually just down with mono and daily exercise will NOT cure this' – I told her next year I can wish for ‘one more year’ again). But mostly about ‘Secret Shames’ and asking you to share them.

Yes, those secret shames like whose picture you had in your locker and which male readers got a perm (or blower drying in the school locker to look like David Bowie or Shawn Cassidy)? One of Linda’s secrets: She actually had a ‘Hang in There’ poster with a kitty. Me? I had an under the hood programming K.I.T.T. car from Knight Rider. Oh yeah, there wasn’t exactly an INNER HIDDEN geek.

Birthday Outing with Hello Kitty: the bunny killing Pirate

Uggggg……………….heat. It has been ‘nice and sunny’ which means ‘I have high blood pressure, a giant headache and threats of a stroke” – when you can’t sweat, heat is scary: your heart beats faster, the blood pressure rises, all things to increase sweat…which doesn’t happen, so I get more TIA (micro strokes) while I sleep and wake with a huge ‘heat headache’.

I am getting ready for my birthday going out. My birthday falls between the two weekends. I was totally off about Kent State, as I find due to the computer age. I had done those ‘look it up in the newspaper assignments’ and they way they talked about Kent State made me sure it was the day before. It wasn’t, it was almost three weeks earlier. Now, a quick google and I get the whole scope including that this year, a new park where the events took place has been created, a National Park, so one Cheryl has NOT visited (since she works for the National Parks).

Tomorrow I am off on some outings, though I had two doctor’s appointments back to back (along with the encouraging (NOT!) statement, "Don't give up, stem cell research is really advancing for neurodegenerative diseases" - because the amount of Stem Cell DNA Vaccines, translants, or regrowths currently in Victoria=0). I am slept up and pretty much ready to go (ignore the erratic heart).

We brain stormed where to go, “How about a Steak House?”

Linda: “NO!” scoff, “Like we can afford that!”

Me: “Fine, this year you get an ice cream cone for YOUR birthday!”

We are tentatively looking at a Korean BBQ, which is something we tried and liked in Japan and a new one has opened here in town. The back up to that is a South America cuisine place with also serves pitches of Sangria. Technically I was banned from there a long time ago when some people I was with set fire to the table in a odd version of dating ‘one-up-manship’ (I steal the folks, You steal the sugar despenser, I set fire to the table, you add alcohol, etc) – it taught me to avoid taking people with very low inhibition thresholds to restaurants I liked.

I did get in the post a couple things for the postcards this week. One is the Hello Kitty the Pirate stickers (they are very rare and yes, sparkly), where HK has a pirate hat with skull AND a Pirate ship with treasure and all. The assistant bunnies all seem to be gone by the time the treasure is buried (sing it like pirates of the Caribbean: “dead bunnies tell no tales…….dead bunnies tell no tales..”). The other are a couple of sticker sheets from when Hello Kitty ran away to the circus (She REALLY does get around).

From a seller on livejournal I bought some stickers, which I did not know were being sent….from a person teaching in CHINA. So I have a Chinese envelope and stamps, if someone collects stamps let me know and I can send them to you. The sticker on the envelope is of a 'ball joint doll' showing you how realistic and complex (And expensive!) they are. A good description of ball joint dolls and getting on from the creators is in the manga book Japan Ai: A Tall Girl's Visit in Japan. The stickers are 1.5 inches by 3 and show Hello kitty with her Winter Court, Hello Kitty out shopping, Hello Kitty selling crack cocaine (naw, I threw that last one in to fool you!), also some stickers from series ranging from K-ON! (now in season 2), to Lucky Star, Chobits and Fate/Stay Night. Looking forward to sending them all over the world! Stickers are FUN!

Birthday time outside! Gotta go…