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.

Book Reviews shaking you awake: The Off Season, Harmony and Chi

One of the best (teen) books I have read about females in sports also happens to be a realistic book about a C6 spinal cord injury. It is called The Off Season and it feels like reading about growing up, some combo of Linda and I. D.J. is the youngest sibling and only girl on an individual milk farm that does what most do; the mother works as an elementary principal to bring income to keep the farm afloat. All so cows can get milked twice a day, so that D.J., who kicks ass at softball, never gets to finish a labour day game. Why? Because cows don’t milk themselves.

D.J. fought the previous year to play linebacker on the US high school football team (yes, the boys football team). She is over six foot and plays basketball primarily but both her brothers play college football – it is the way to get an education. D.J.’s boyfriend is the Quarterback of the rival towns' team and the one she sacks in the pre-season scrimmage. D.J. is a linebacker due to skill and hard work, not because she is a ‘token’ female. Meanwhile her friend Amber has come out of the closet as lesbian and due to harrassment lives with her lover. Amber and her lover both work instead of high school, saving up money to drive to a place for a new start.

Suddenly, with a shoulder injury that could affect her basketball, and her brother Win getting a bad blow and being hospitalized D.J.’s life changes. She can still be a linebacker, but the shoulder injury will affect her basketball and basketball is the way to a scholarship to college. Meanwhile, Win, who had a spinal injury is now a parapalegic, but just lies there, refusing to speak, and she has to be the strong one, with her mother injured and her father trying ‘organic’ and turkeys to keep the farm afloat. Days doing homework in Win’s room and nights drying his eyes from his quiet crying. She has decisions about her own life to make, about the sport she loves and fought to play which she has to drop if she wants to play the sport (basketball) which could take her all the way. And in the midst of this, she is dumped by her boyfriend for being ‘too tall’. It is the reality of it all that makes this such a great book. There is no magic solution, only hard choices and just gutting onward.

D.J., like her father and brothers has had a hard life, one where being ignored at school hurts but compared with a mother with a bad back, having to take care of the farm, doing the schoolwork, basketball, football, no money, it is just pain. Right now she needs to be there for both of her brothers, the one who is now a C-6 and the one who has to be told, ‘I’ll take care of it, just go back and play college ball, and play well enough to keep your scholarship.’ A hard life, but one that teaches you how to be tough in ways beyond working hard; how to stand up for friends (like lifting a guy making gay slurs off the floor), how to know you will never be ‘beautiful’ but you ARE, and that is what is. DJ lives the hard life that teaches you how to make hard choices, because no one else can.

And for those of us who grew up with a hard life, looking for a book about sports, or disabilities, or being tall and female, and not puff books about sleepovers and angst over getting the right spring dance dress (like WE would be invited to sleepovers, or have that angst when running wind sprints for an hour every day before school – more like trying not to puke). Wearing old shoes to school with no tread because we couldn’t afford others, and our basketball shoes were treated more precious than our church mary-janes (though parents wanted the latter polished a lot more often). Here is a book for the other 20%+ of us. One book versus thousands, but it is a great book. And helps you know you aren’t alone.

For my mental health I have been reading Harmony by Itoh which was written while he had cancer, and edited in the hospital during prolonged treatment. He died from cancer, having only written two books, but said in this book the things that can never be said, have never been said – and it won the two awards of best Novel for the year Japan.
"resource awareness can go fuck itself. My body isn’t here for the admedistration. It is not here for any of you. It’s only here for me. ‘these tits, this ass, they belong to me’”

A book about Tuan and her teen friend Miach Mihie who sees the referring to youth as ‘resources’, to women’s wombs as ‘resources’ as exploitation. The whole society where honest feeling, expressed openly in a way seen as ‘out of control’ has moral meaning as ‘wrong’ or 'socially unacceptable’ is exploitation. She and Tuan plan to show that their body is theirs alone by starving to death. Tuan wakes to find Miach dead and she is now alone is a society where her acts, her reactions, her health are seen not as a part of HER, but as part of her responsibility to society (eat well or burden society, produce children for the next generation, be a good workers, a good resource!). For a child who was sexual exploited before joining a society of conformity, what difference is there between a man with a gun who tells you he owns your vagina and a Minister of Family, or Minister of Health who says the same? A society where displaying raw emotion was punished as even our reactions are ‘owned’ by the collective?

“A vast wasteland of public correctness and people as resources”

Anyone who has been in the medical system, particularly a female, has learned that certain emotions, over emotion, certain displays of intellect are not acceptable and clamped down on. That illness makes you a property within the medical establishment, things like privacy, or confidentiality end when every nurse knows your chart. Comply or be forced to do so….for your own good.

What then the different between death and the governments, groups, businesses all trying to control and manipulate our will and consciousness? The Utopia we are offered is Harmony, a life without consciousness where we buy, we exercise, we live all according to expectations. It would be Harmony, it would be Utopia, there just would not be an ‘I’.

“It is over life, thoughout its unfolding, that power establishs its dominion; death is power’s limit, the moment that escapes it; death becomes the most secret aspect of existence, the most private’--Michael Foucault.

The first question that plagued me when I became disabled was ‘but what worth will I be to society? Why do I deserve to live, to be supported?’ – this book attacks the idea that had so wrapped itself into me that even in sickness I was trying to be a good ‘resource.’ It is a book that transcends genre, and I will probably take it with me to the hospital. Far better than those watching and ordering I follow Kubler Ross’s stages like a timetable; trying to tell me how I am ‘supposed’ to feel, and what five simple steps billions of deaths will all take (it is a theory, that’s all, one which works for SOME people).

Hard lives, hard deaths. It takes courage to write about them.

And now for something complete different.

I’ve referred to Chi’s Sweet Home before, but seriously, if you have a kitten, and you like cats, then you will like Chi’s Sweet home. It was a TV series with about 100 five minute episodes. Each book manages to put the entire season in one full colour manga book. The viewpoint is of Chi, and while sometimes sad when Chi remembers her mom, and goes looking for her, it is often the impulse fun of kitten. But also sometimes tainted with some ‘grrrr’ toward the guy who took her to the vet (and had the thermometer up THERE). If you get the books before the release date (August 24th for the 2nd book) you get the book for $9.41 which is less than we paid at Comic-con, 33% off and all. (oh, the links here produce no revenue, this is an ad free zone, I just put them there so you can get the best price easily if you decide you want it). The best review for the book is for you to experience it, so here is a ‘episode’ from season 1, when Chi finds the OFFICE with so much to play with, like computer keyboards (I have received many emails with extra letter from people who have had kittens walk across the keyboard during the email).


Everyone who has read these books recommends them. So grab a copy for almost $5 off when you can (that’s almost 55% of Chi’s next book paid for!).

I just want to finish saying a bit about how glad I was to see The Off Season after reading literally over a dozen books from Girl in the Arena to Forest of Hands and Teeth where the female just hangs about waiting for the alpha male to help her, and marry her (add zombies, gladiator, no food, a cone around teens with new mind powers or some other odd future). The young adult fiction for teen girls IS Margaret Atwood’s the Handmaids Tale only without any irony. Why do only men patrol the fence? Why can’t the main character make up her own mind without a guy to lead? Why in the future is there gladiator combat but the women’s league is discounted? Well, that’s just how it is, so learn to look good, be nice and wait for some guy to marry you. If you think I am joking, looking at the HUGE bestselling series The Mockingjay Trilogy, where our heroine Katniss learns that while she has to KILL the other 24 participants. But wait, nice girls don’t DO that. So instead she get a REALLY good stylist and makes a HUGE impression with her dress. And ends up being NICE and friends with two others, and somehow is the survivor without killing anyone (except this nasty girl who was attacking her while she was laying flowers on the grave she made of a child – geez, is this high school, or a battle arena?). The Second book, Catching Fire, has her sucked back in with double the participants (now she has to kill 48 people), except of course she has her super stylist make her have FAB hair and an amazing costume so the TV audience love her and ends up…killing no one….again (I know, a fight to the death against 72 people and she WINS, by having good MAKEUP!!!). It is so popular that there is a home game, so you can play the Hunger Games Strategy Game – you can wear the t-shirt, get the key-chain. Why make hard choices when you can learn to turn that smile and social pressure to be nice into a formula which makes 70 people kill each other and you survive (if only life was like that – IT IS NOT!)?

The new teen books this week included one of a future post disaster (which all the teen books are about), where it is an island of women, who protect against the enemy: MEN. Okay, kind of boring old story that. But wait, our teenage watchers and hunters find an old ruin. I love ruins. And in this one they find things which turn their world upside down. Ready???? They find high heel shoes, and make-up and fashion magazines. Then return to the main village and start to question why they have to do what they do. Yes, the high heel shoes and make up empowers them away from being able to take care of themselves. The book even includes ‘talking points’ for classes. Can you see why after that a REAL life when you have to get up and milk cows even when it is freezing and you might, golly, chip a nail is such a relief! To see a growing woman who actually WANTS something and is willing to fight for it, and that isn’t fighting to be noticed by some guy she will hope will marry her.

I don’t wear nail polish, because between falling down, manual transfers, manual chairs and the rest of disability life, it requires someone professional to put it on, and lasts a few days. Nail polish is nice, it is pretty but I don’t need it to live. Good goth earrings are another story altogether however!

As a weekend relax (for me, using your brain IS one of the greatest pleasures), here is a music video to the Unusuals (the NY police). The first part is a good and nice police officer being blackmailed by a bad guy from his home town, trying to decide what to do, arrest or do nothing. The second part is about the Murder Shop – where in NY, you can go to this shop and get everything from uniforms to ways to kill whoever you want. The Police decide instead of shutting it down to keep it open. However, SO many people come in, and they arrest them that is it just darn depressing, but even when they try to quit, people are begging them for help in murdering someone else (the depressing irony). Lord Lord Lord!

Blind because of Water?

I received this from a colleague of mine today right after I came back from lunch was kinda shocked at 1st. I mean water being harmful? Of course there is always a doubt about it, no?

Well below is the news article about it. Though it was published in 2007, still it's better to share information around, no? XD

Kinda interesting but scary at the same time hor... Yea even I am kinda sweating over this. But a thought to ponder of why this has also happened. Humans. We destroy our ownself! We are so self destructive aren't we?

Correct timing to drink water, will maximize its effectiveness on the Human body.
  2 glass of water - After waking up -  Helps activate internal organs
  1 glass of water  - 30 minutes before meal - Help digestion
  1 glass of water - Before taking a bath - Helps lower blood pressure
  1 glass of water - Before sleep  - To avoid stroke or heart attack

That is supposedly the correct method of drinking water according to the mail I received. Yet to do much research from my side though. Would certainly check on it and update it here!! Dear Readers, you could share this with your dearests as well as your friends to ensure that everyone is safe... 

Prepare the umbrella before it rains they say.  XD

Should Able Bodied/non-Disabled people comment on a disability blog?

I hope people had a good, fun or productive weekend, I am waiting for mine, and I know it will come. I wish I could be there emailing more people but it seems I actually am ill this time and exhausted myself I think on the weekend, mostly because we DID have good weather and I could not sleep as my body bloated itself. I also now believe that part of what wakes me is the level of toxins in my blood; or rather, during the day, I am able to pee, which is the ONLY way I currently have of getting rid of toxins regardless of if I have a seizures (which I often do while asleep), or have muscles repairing and the dead cells are thrown off….into the blood stream, which would normal excrete out as sweat. Right now, it just builds until either a signal in the brain or the liver or kidneys says, “hey, where did all these toxins come from” and tell my body to circulate more blood to the surface, to work harder, to heat me up and thus sweat them out. Except I don’t sweat.

I have been having some problems with hypertension while sitting down and what I believe to be vascular strain due to a very high fluctuation of blood pressure on brain and heart (short notes: brain go boom again). Dizzy and all that. Plus spontaneous bleeding which is sign on high blood pressure spikes as well. Or my divinity, it is really hard to tell. Due to these and other issues I got a record breaking number of postcards done: 2. Before you congratulate me, I wanted to get 50-75 done so TWO is not really what I consider an accomplishment. Nor was it because I was resting. Though I will soon (just as soon as I get this blog done!)

I was hoping to talk about some manga reviews soon as well as a post on my grieving. But I am simply too unwell to do either of those today so the question I will ask instead is one which I think some of my readers ask themselves: Should able bodied people, or people with different diseases post on a disability website like this (by the way, I still consider this a disability website, regardless of seeming to have disappeared off the radar of the disability world: death is the ultimate disability)?

There is the short answer and there is the long answer.

Short answer: if able bodied people did NOT comment I would be very disappointed, so YES, I feel they not only can but I hope they will more and more. Even though now I lead a vastly different kind of life than before I started falling down (yes, this is pretty much how I walked around the fencing club and tournaments after a good workout).

Long answer: I would say I have very little requirements or expectations of what people should be, but so many friends have countered that idea so I will outline the type of people I want and expect: people who want to care about other humans (or cute catgirls), people who want to learn about others, people who are willing to push at the stereotypes in their brains (learn, care, push self). If you don’t meet those criteria, don’t bother applying.

I have never had the type of stigma or open discrimination regarding my sexual orientation, and that includes all the stuff thrown at me as I have had being disabled. My same family (Linda’s) who wouldn’t assure my safety from drunk cousins or uncles or even a person to tell someone drunk and offensive to ‘stop it’ are now ready to see me. I am sexless, I have no orientation, I mean, I am withered, dying, wheelchair, oxygen; if I was human….that would be another story. I found out that until recently I couldn’t get arrested in this town, recently as in last year, because…..the jail wasn’t accessible. Indeed, this year, after WINNING the election, the BC accessibility awareness WEEK has been reduced to the accessibility awareness DAY. It is not that discrimination based on race, gender, sexual orientation and religion don’t occur regularly, it is just that the people discriminated against are united in one thing, their collective stereotypes against people with disabilities. And as a person who is younger and is ‘different’ in my disability than others, none is a greater example to me than the care giving agency and care givers themselves. Let’s just say having a legal document saying that we are legal married still hasn’t quite made it into the computer banks at Beacon – but hey, it has only been a couple years of care, right? And most of my suggestions (As well as books left on how to ‘cure yourself eating only green vegetables’) are by my care givers. I am sure if I had a broader range of people I could be discriminated against or brought up against the barrier of ignorance in many other places, I lack only opportunity.

So WHY, when every human being on the planet will become impaired, diseased or disabled, do we in the west want to remain in willing ignorance about it? I am not going to answer that. But those who do want to learn about what other people experience; from friends, to people from their church, relatives, or just people interested in the diversity of people, I WANT to be here and I WANT to ask questions.

While I have had comments from able bodied people attacking me for ‘getting out of my place’ (like last year’s 10K), I hope that I have never, regardless of pain, attacked or made a person feel foolish for asking a genuine question in an attempt to understand things better. I have asked questions of many other people with disabilities, some in emails, some on the blog, from how does the bowel go when it NOT go and ‘what IS the digit method’ that para’s and Quads use, to questions regarding mobility, how they have sex, fatigue, and pain along with pain control. Those with disabilities, disease and impairments are a vital and significant percentage of our population (1 in 6 I believe) and to pretend they don’t even exist much less be unable to know the basics to assist someone, or grant them ease. Or even know the basics of how to talk to someone in a wheelchair (sit down, so you are at eye level), isn’t really excusable anymore. I say that because there are laws, which make is costly to BE ignorant called the ADA or the EU laws, even Japan has a disability act. And yes, there are a lot of impairments but if any guy can know on 47 different arena’s the best weapon and place to make a sniper head shot in game X much less Game Q, Game V, Game L and Game R; know how to use their various devices from cell phones, blackberries to iphones, then I am certain that the ability to acquire knowledge is there. But yes, un-disabled/able bodied people are exploring a whole aspect of civilization that is foreign to them and may often seem maze-like and overwhelming. But we are a friendly bunch, by and large!

So spread the word, if nothing else, I have nice pictures of girls in revealing and tantalizing clothing (buy me this outfit and I will get my nails done – a FAIR trade!), that will get the guys (and more girls than you might think). And blogs, including this one are about real people, real lives – just like those a person might meet every day. Knowledge is power, knowledge empowers caring and kindess and to know and help your neighbor, blogs are a good place to start. Yes, I hope I never lose the able bodied, or non-disabled readers I have, or the comments they make, including questions which if I cannot answer, I hope another reader with a different impairment/disability can.

BP and brain problems: "Help, I've fallen and I can't get up!"

I have lay down and not been able to get up. It was light, now it is dark. They say tomorrow may be a storm, so they may not be chainsaws at 8:00 am. I don’t know. I am in the space “beyond.” I do not eat. I do not drink. I sleep. I wake confused. I sleep again.

I cannot remember things. I do not want to be one of these people who says they cannot blog because of the blahs. I do not have the blahs. My heart does not seem to be able to produce enough force to keep my blood pressure from dropping. This raises my heart rate. This used to be called Orthostatic Hypo-tension because it is a sign of autonomic failure when you stand up and your Blood Pressure drops and your heart rate raises to try and compensate. A change of 30 mlb is needed for diagnostic standard.

However, now, I am sitting, I am sitting with Linda and Cheryl, but I am dizzy, I cannot see from one eye. We take my blood pressure, the systolic is 120, then 108, then 95. It is dropping and my heart rated goes up and up 110, but with a heart that flutters instead of beats. The systolic and diastolic are close together – there is no pressure in my veins. There is no pressure to get the blood to my brain. This makes me dizzy and have other problems.

It seems that I now have autonomic failure of Orthostatic (change from a static position) Hypo-tension, except I seem to have STATIC Hypo-tension now as well. I don’t move and my heart cannot account for the change. What is the change? Unknown, some further failure in the vascular system, it appears. Would putting a pacemaker in make a difference. Without knowing the cause (are the veins just all opening simultaneously after I have been sitting still for 50 minutes?), how could a pacemaker compensate. Without getting the blood to the brain, I cannot function. Where do you go to buy a home centrifuge? That would force the blood to my brain.

I am having a time of it, I have pushed myself as hard and as far as I can, and when I figure out how to combat this invisible problem, I will be full steam ahead (maybe I need a steam pump for my head?). I do not know. Truth be told, is that I feel very u-h for the last long while. And I except I will be u-h for some time to come. I do not have Mono, as it becomes harder weekly to do the postcards, and less are done each week. When will I become rested enough to be ill?