Wednesday, October 31, 2007

Tuesday: I hit bottom, explain comment moderation & find a new challenge

Yesterday, I flipped out of my chair due to faulty pavement, ripping off two toenails, and bruising the right half of my body. For some reason my body went into spasms when I hit. Can anyone explain that? Just to let you know, concrete is REALLY hard, particularly jagged concrete.

Emotionally I am pretty trashed. Sure, I am pretty bad physically but emotionally I have hit that place when you google to find out exactly how many of your different prescriptions you need to take to kill yourself. Turns out I literally have enough to kill myself about 14 times over. I don’t want to spend a lot of time going into detail but really, what I post is about 1/5 of the bad stuff. I don't think I have bad karma or people are out to get me or anything, sometimes that is just the way things go sometimes. The question is what do I do about it?

I cannot chose happiness right now, however much I might wish for it; but I still have choices. And right now, I chose to write, to find some humor in this, maybe, somehow.

Yesterday, I went with Linda to meet her locum GP, a woman who looked me up and down and said, “So, you’re the one with Shy-Drager.” It wasn’t even a question really. So she knew about Shy-Drager? “Of course.” And she’d seen it before. It turns out that Linda’s health problem is, well, me. I need more care and she needs more sleep and now I need to go to VIHA and somehow make that happen. I talked to the locum about how none of the specialists want to sign off on a diagnosis, and even symptoms like my heart and blood pressure variations get kicked from heart to neuro and back.

The locum, a formidable woman in her late 50’s turned to me and said, “Your doctor needs to write ‘Elizabeth has multiple system atrophy and needs emergency caregiver support’” She made it clear that I need more care and trying to fill that gap and work is making Linda sick. She also made it clear that I better get my butt in gear as my care needs would only increase. She was the first who so bluntly and calmly talked about multiple system atrophy. So I met someone who actually knew about MSA and had no question in her mind that I had MSA. I felt a little relief to know for sure. I felt like a burning fist to the gut to know for sure. So a sucky prolonged ending and not enough that I was dragging Linda down financially, but now I was exhausting her, draining her. What exactly could I produce in my time left that would be worth the effort of keeping me alive?

My answer is to do something that makes life harder; challenge yourself for fuck sakes Elizabeth. Aren't you tired of being the one reacting to others? I am obviously getting placid, or flaccid. When was the last time I tilted at a windmill? I inquired about assisted skydiving (you really need to have some hand control for that cord I think) and assisted hang-gliding. I found someone had "heard" about assisted hang-gliding, so a whisper, a rumor for me to follow up.

In my apartment my wheelchair can’t make it into the laundry room, the door is too small. My home care person was putting things in the washer yesterday and I was trying to direct her. I decided I needed to "be part of something" and literally threw myself forward out of the chair onto the floor. Seems I had forgotten about getting flipped out a few hours before (Ow!). I dragged myself over to her and she was, “What are you doing!” She demanded.

I poured the amount of detergent we needed and passed it up to her. “Helping.” I told her.

“Helping?” she said is this very no-nonsense, you-are-an-idiot tone as I then dragged back to the chair and tried a few times to get back into it. “Helping, of course you are helping” she continued watching me. “I said I could do it but no, you have to ‘help’ which leaves you on the floor. ‘Help’ away!” I finally make it into the chair and give her a "see, I'm still alive" smile, she just continues, “What should I say? Should I say 'Don’t help!'? With you it is like telling a child not to put their fingers in electric sockets, they are going to do what they are going to do.”

I was getting the sense she really wasn’t about to applaud my initiative toward more independence. Oh well. The thing is that my coach and other athletes really never understood why I would push to levels of training that were extreme when it was pointed out to me that I might train like an Olympian but I didn’t have the talent of one. I was always going to be nobody, a non-contender. I didn’t train because I was ever going to get some medal, but because I could be better, do something I had never done before. It is those leaps into the unknown; pushing yourself when you already hurt that yes, sometimes hurt even more but sometimes you do something even you didn’t know was possible. It turns out that my home care person could have done the soap themselves. That wasn't the best "leap" I have ever made.

Do I want to die? Right now, most nights, I ache for it; like a lover's touch. I am surprised the amount of pain I can take, and face it alone. I had to enable comment moderation because a particular family relation who had sexually used me (or rather my body; there wasn’t a lot of pillow talk), decided after many years to suddenly take an increasingly focused interest in where I was; and could he find me, see me, be with me? He used the blog as a way to try and get me to respond to him (a nice jolt of terror every morning by email), and tried to convince me that every time I didn't talk to him or respond as he wanted, I was "hurting" him. So I faced it and told him (and some family) that hey, didn’t really like what you did, and if you want a relationship with me then I guess we will have to talk about this.

Anyway, his response was to call the family members immediately and say who knows what (probably that I am mental or something) and eventually a letter to me which is sums up with: ‘I don’t like jokes like that’ and the word “disgusting” in reference to me a bunch of times. At which point I added moderation to the blog; and that’s pretty much the last I have heard about it, from anyone.

So while I thought, “Hey, finally I’m free and I don’t need to spend a bunch more years coming up with reasons to avoid said person and hide how I feel and the shame. Now, it is out in the open and I won’t feel ashamed again.” Except of course it seems no one knows how to deal with IT and what I am sort of feeling right now is that pretty much everyone would be a lot happier if I didn’t exist. Because without me and my big mouth they could have a wonderful happy family if wasn’t there being so cheerful about not being ashamed anymore because: incest yes but finally out in the open.

Turns out the truth does set you free.....from anyone getting near you. Which is rough But you know what, I haven’t cut myself, not once. No getting drunk. No taking a bunch of drugs. No suicide, well not yet. I just keep one hand on the sword and I keep going. I try to be there for Linda. I look for something good and happy and somewhere I can pitch in and help people. A few days ago I offered to carry an old couple’s groceries back for them, but they choose to hold onto their walker and make it back inch by inch. I was waiting in the wheelchair behind them, because they were both probably under 5 feet tall. I am sure I could have picked them up and carried them to their door. I guess I can’t blame them for desiring independence. What should I do, wrestle their small box of groceries into my lap with a “I need to do this more than you do!”

Anyway, here is to the death of October 2007 and I can only hope that whatever comes in November is better than October. A couple days ago one of my care workers said, “Well, why don’t you try to ‘beat’ Shy-Dragers?”

This seemed that total pie in the sky "think happy thoughts to beat that stage 4 cancer" talk; so I said, “Because it has never been done; you know, it is that brain melting thing.” Then it hit me, wait a minute, did I say that no one has ever beaten this thing? Ha ha, does this not sound exactly like the challenges Elizabeth goes for (and why am I suddenly referring to myself in the third person?). “Yeah,” I said, “I’m going to beat this.” Home care worker was pleased with a that’s-the-spirit comment.

Of course I’m not going to beat it; I know it’s impossible. That is what makes it so darn attractive. I’ve already started working on a plan to find every redundancy system in the body for autonomic systems; like singing instead of speaking for tongue function. Not that being the first person to live with MSA is my only project. I will, of course, continue toward being the first female wheelchair boxer with an exhibition bout; figure out how to break as many other mental and physical barriers as possible and narrate it all the way. But first I have to stop thinking about pills and how easy it would be to “buy a one way ticket to Tulsa.” (Isn’t Tulsa sort of an afterlife?)

And that is Tuesday.

Monday, October 29, 2007

I discover my assumed privilege in losing it; Beth the late learner

Today started off poorly and went downhill. My only emails were from people telling me they were too busy to email me…..errrr, okay. Then while waiting to go to the DENTIST (by the by, I don’t like the dentist, unlike the rest of you), I wandered past some feminist blogs which seemed to be in the same place they were last week/month/year about how trans-women weren’t women because of privilege (apparently it is tattooed on at birth?) and about how real men can be married to feminists but how real feminists can’t be married to tradition, and of course the usual bad people: sex workers, people who eat meat, or plastic or don’t get coffee at independent houses instead of chain ones (and the other anguishes for those with disposable income). This depressed me no end because, fuck, am I allowed to be a feminist and BEG in front of Body Shop and Starbucks? Or is that not allowed too.

I wrote a piece called All intimacy, no dignity for the BBC at Ouch and reflected today on the idea of “privilege” and how every group that joins together likes to seem to pick someone to beat with that word. Well, at least until my dentist, in the “spot check” for my upcoming first dental crown “forgot” to mention in the previous spot check and hour long dental check-up that I “might” need some wacky and extremely painful jaw/gum surgery because of where a tiny piece of tooth chipped off while I was (oh the irony in this) FLOSSING! So while staring another bunch of needles and $1000+ surgery in the face I came back to find that home care couldn’t get in because the intercom was dead. Which didn’t matter because at that moment in time I felt I would rather be dead than have to face dental surgery in order to HAVE my first crown.

Then came the post, with a letter from Revenue Canada which says that they are missing a piece of paper which is why our tax refund (of many, many medical costs) is held up and if they don’t receive it in X days, the file will be permanently closed. I call; they will call back and clarify tomorrow, will I be in. I tell them that yes, I have a terminal disease and I am housebound; that if I am not answering I am either sleeping or in the hospital. They want to know if a home care worker will pick up if I am in the hospital. I guess they don’t want to make a .50 cent call for nothing.

Then a phone call from the medical company delivery supplies tomorrow. What supplies? It turns out my Occupational Therapist, when she quit her job, not only sent me an invoice to pre-approve through insurance, but also ordered them in my name from some friends of hers. They are coming by to get the $1,000 and drop off the supplies I didn’t order and are currently supplied free to me by Red Cross. Darn, where does Linda hide those $1,000 bills.

It was sometime around there that I realized that I, like the feminists and the (insert group here)ists, was one of the most privileged people around, and like the classic patriarchy, I didn’t even know it. I was athletic, not just able bodied but athletic and took the superiority that our west coast gives to those who are fit; now days Linda says to me, “I think in ‘Core Muscle’ class how we were planning to do this together, but now that’s not possible.” She uses that evaluative voice I used to use when planning hikes and jogs. Yup, I’m no longer self ambulatory and that loses a lot of privilege. I know this because the few times you might be invited somewhere (or more often told they THOUGHT about inviting you but couldn’t find a place that you could access), the group lets you know how much EFFORT they went to accommodate you. This is what I call, “stair climbing privilege” because those who climb stairs just go places, into places and don’t think about it at all. Of course, in order to get where they want to meet, I usually have to go to enormous effort but that isn’t even considered, because that isn’t the nature of the relationship; they are the ones with power who have lessened it to be with me.

The greatest privilege I had was my gigantic brain. Sure I had two different learning disorders but my gigantic brain overcame them and I never gave two thoughts about what it would be like to struggle and struggle to get a C against these disorders to be told to “try harder.” People listened to what I had to say, indeed one thing able bodied people do is always listen to what other able bodied people have to say, even if repeated statements show the person to be not that worth listening to. And sure, there were many who were threatened by the big brain, but more who liked being around me. Today, I have a home care worker who is what is kindly called, “not the brightest bulb” as she couldn’t seem to understand if I OWNED 2,000 books or WROTE 2,000 books (look at the book spines…I have MANY pen names, about 2,000 I guess). Her favorite phrase when I say something is, “Isn’t that cute, that you can still think about things like that?” And when I start to slur, well, at that point no one even looks at me, they just look at my “translator” or flee.

Anyway, I was an idiot in the ways of privilege and now I view many of the writings of others to be the blathering of other idiots. Can you walk up and down a flight of stairs? Then you are privileged. You worry about women-only spaces; I worry getting to accessible spaces and if I have the energy to get there. I am sure the raging 30 years of debate on what constitutes women only spaces is worth the trail of emotional bodies from the continuous knife fights. I hit horse chestnuts and flip out of my chair. I have yet to see a gang of feminists ride to my rescue (thank the patriarchy for the obsession of men to refuse to pass a woman fallen out of wheelchair, even if they leave their car on the road blocking traffic). I am sure as I realize how I wore my privilege as my clothing that I am just an idiot about other types of privilege I now use. I have learned from Nellie McClung that the best intentions of feminists end up with results that are crimes against humanity (the Alberta Eugenics’ board anyone?). I don’t know what is best for all women, nor do I plan to sterilize those who I disagree with for the good of all. I’m getting by, or not, one dental appointment at a time. Not very brilliant or pithy is it. Ah well, better to learn something late than not at all I suppose.

Friday, October 26, 2007

Halloween leaves Elizabeth behind again!

Halloween is here – Boo hoo! While I feel left out, everyone is selling wonderous skull things which I can buy for regular use. I have seen a lovely skull lunch box.

Linda says, “Why should I get you a lunch box, when you DON’T EAT!” (side effect of constant nausea)

I gave her a wistful look and gave a patheticly optimistic “We could go on picnics!” Right. Because November is the month when people think about picnics? Still, I am really hoping it comes with a black thermos with a skull on it (or the “poison” sign!)

Anyway the reason I don’t like Halloween is that I have NEVER been invited to a Halloween party. SUCK!

First it was because my parents were in a religion where Halloween was somehow connected with all things evil starting with orgies (people actually used to believe orgies were BAD) and leading to child sacrifice. So my childhood memory of Halloween was hiding with the rest of our family in the house with the lights turned off listening to the doorbell of small disappointed children.

Then, by the time I was ready to kink out with party outfits I was living the UK. The part I was living in didn’t really go for Halloween and Halloween parties. They did however REALLY enjoy creating effigies of people and setting them on fire (which, with the relish of the small children involved is often MUCH more chilling). This happens five days later than Halloween on Nov. 5th where everyone burns Guy Fawkes for trying to blow up parliament in the Gunpowder Plot. Apparently it is tradition to burn the guy again and again (this year will be the 401st anniversary). Also, for good measure, it is tied into the burning of 17 Protestants (the more to burn the merrier!). In Ottery, Devon there is the burning of the 17 Barrels (odd how it is the same number of burnt Protestants) – it is a big affair where you go around not just lighting a bonfire but filling a barrel with tar and then the tradition is carrying around the barrels WHILE they are burning (it seems some families have carried certain barrels for generations). The barrels burned (in symbolic burning of a human?) in the afternoon are the “boys and women’s barrels” while by night the barrels are 30 kilos (about 75 pounds). So running with the bulls is stupid but carrying around a huge barrel of tar while it is on fire is tradition? Do we have pictures of what happens when you trip?

Anywho, when living in a country where people get really drunk and then set giant bonfires burning some guy from 400+ years ago or get drunk before they CARRY around burning barrels of tar, selling the idea that a few costumes of girls in dark wings is scary doesn't really work. Plus, in my city some of the lads thought it a laugh to shoot off fireworks at EACH OTHER. Woo hoo! Also, burning gays was also a big Cardie tradition (a friend of ours was covered in lighter fluid but escaped; another had burning materials pushed through their mail slot) – that was a good night to stay indoors.

So now I am back in Canada and one. This kinda sucks because I bought my dark angel wings. But I will get use of them later in going to market or flying downhill making meowing noises. This is the advantage of everyone thinking that you are the equivalent of a child once you are in a wheelchair; you can do whatever rebellious teenager thing you didn’t get out of your system before and no one cares. In fact, they admire you (cleavage helps!).

As Sara at Moving Right Along pointed out, Halloween is when people dress up like us; the disabled – yup, cultural affirmation we are someone’s worst nightmare. Actually, I wouldn’t mind getting one of those old wicker wheelchairs to get pushed around in for the night. Do you think I could get a lot of candy, or in some karmic retribution, end up in a neighborhood where families hide in darkness (serious, only about 10% of the houses in my area don't have stairs to get to the doorbell, so I guess karma is already telling me something – but…but…I want my candy corn!).

So remember me as you get drunk and throw off the inhibitions of society for one day a year. AHHHHHH! I want to do that! Oh well, I have the other 364 days to make up for it. Don’t even get me started on Christmas parties (Linda’s employer THE GOVERNMENT, has a Christmas dinner for employees only, no spouses – which is the same policy her employer had in the UK. Wow, years of being designated driver sure is fun!).

In completely unrelated news, I now have a GP. True it is at a homeless drug clinic but I HAVE A GP. So I hope this one is a keeper because I need him to be a bit proactive; like help me with the fact that my hair is already starting to fall out – wow, I always wanted the post-nuclear look. And I think that is a great tie-in back to Halloween and ending up looking like someone’s nightmare. Anyway, I am off to watch cheesy horror films like Wishmaster and Fright Night. Have a fun weekend (and send me Candy Corn)!

Thursday, October 25, 2007

Neurological Conditions: fatigue and extreme fatigue

Fatigue; I made myself a promise this week, in bed staring at the wall, that I would try explain fatigue. The official definitions use words like “tired” or “boredom” which means that either they need to come up with a new word (“soul sucking energy vortex”) or the definition was made by people who know nothing of fatigue.

There are so many conditions that have fatigue; I don't know what they all feel like. I read once about neurological fatigue which said, “Fatigue is such that if a fire alarm were to ring letting you know the building was on fire, it would make no difference, you would be incapable of moving.” I think often of what they referred to as “battle fatigue”; soldiers not even flinching when bombs exploding near them would shower them with dirt, their eyes a thousand yard stare as they just keep going. That’s all that matters; keep going.

This last two weeks I haven’t been overly sleepy (managing 10-11 hours a day, which is enough to survive), nor depressed. I just can’ People tell me to go places and they push me there and I focus on that and I seem almost there mentally and they come back five or ten or thirty minutes later and find me leaning over staring into space. Sometimes I try to find a wall so that I don’t fall out of the chair.

It’s odd, I’m so starved for interaction that when a home care worker came on Monday, I stayed upright so I could say some vague nonsense, she left to do my laundry and I laid my head down on my knees in the chair. I wasn’t bored, I wasn’t really anywhere. I had no sense of time. I knew that she might come back, or someone might come back today. Was there anything else to know?

By the end of the day, combined with the pain, I have been unable to control my trunk, my neck. I have been literally poured into bed. I live in the time between each breath. My face is expressionless as the tears roll down the sides of my face. I ask them to promise me they won’t leave me like this; staring up into the darkness for hours. We try another pill, another pain pill, another sleep aid. It’s been an hour. It is like this many nights; sometimes many nights in a row.

Earlier this month and last month, I would be too fatigued to breathe, or rather, my lungs couldn’t expand and I was too fatigued to stop from choking. I didn’t even really feel anything, just the floating in the darkness. Good thing it takes several minutes to die. One home care worker grabbed me by my hair to lift my head where it had fallen over a rail, obstructing my windpipe. “It took me a while to figure the noise out.” She said. My throat had made a clicking noise.

Linda’s observation is that fatigue is the time after you have fought to stay upright and lost. That it has spread to your whole body which is now a dead weight. Sometimes, I think there is this little ball of energy, and the line that lets you touch a bit of it stretches and stretches like taffy. This is when I stare at the screen, watching some inane US series, enough energy to twitch a finger on the roller ball. I have to shut down everything to keep that line connected. Sometimes the line breaks and Linda comes in to find my head lolled sideways. I’m lucky to have Linda. Without Linda, I would stuck in bed. We have a special chair that cradles my body and supports my head. She can put me in it and in front of the computer. She talks to me. I seem more human somehow sitting up (well, sitting at an angle technically). When she needs to she can read my blinks and changes in breathing and we have a conversation, like a “real” couple. Fatigue doesn’t allow for a lot of dignity; Linda gives that back to me.

What don’t people get? Hmmm. I think they think I should get some sleep. They can’t imagine waking up like this. Can’t imagine that by the time I get dressed, brush my teeth, wash my face, go to the bathroom, have a cup of juice, take my morning pills and move a total of 40 feet that three hours have passed. Actually I can’t imagine it. What do I do in all that time? Well, drop things a lot of the time (at our house we call this “The dropsy’s”). So some days the time I stop brushing/grooming my hair is the moment I can’t lift the brush above my shoulder. That will do. I rest between attempts to put in an earring. I can only hold my arm and hand up for so many seconds and I can’t seem to find the hole in that ear. Stop and rest for a few minutes. It is insane. I know that.

I just have these rules. Every day I have to get up (if possible), brush teeth, put in contacts, brush hair, a touch of foundation, some lipstick if I am planning to go out. I get dressed, I put in my earrings, I put on a headband. I drink some liquids, preferably before 1:00 pm, and have my “morning pills.” At least three times a week I go out on my own, downhill to the video store, and back. A 17 minute round trip. Then it is time to sleep again. I take out the earrings, I take off the headband. I sleep. I try to get up by 6:00 pm; 8:00 pm at the latest. Three times a week I shower. That adds an hour usually.

I do have energy, I have it in hours, groups of hours, sometimes even a day without fatigue. I go out, I chat, people want to know “what have I been up to?” Uhhhhhhh……… They think what they are seeing is how I am all the time. In a way I envy these people, those who only know the best of me. Instead by the time I get up and partially dressed the phone rings. It is some health care person who is letting me know they have booked another appointment for me. To get there requires two bus transfers. The last time I went to this meeting I was told, “You don’t seem to be making an effort.” The worker seems miffed I am not excited about this meeting she has scheduled for a time convenient to her. “You’re not my only client!” She says before hanging up.

All I can think is “Thank God!” Back to getting dressed.

Please add your experiences.

Monday, October 22, 2007

Linda the Camera Whore (the proof!)

In response to the quiz in the following post (Are you a Camera Whore?) where you get to see if you have degenerated to the level of camera whore compared to Linda and I. Some readers have asked for specific pictures and proof. Since I am completely shameless in exposing my partner’s addiction, here is a few of Linda’s pics/enabling:

I REALLY can’t show you the pictures she took in a particularly forbidden place (question #7) because if you recognize them, then she is in trouble, so while we have them on our screen saver, we don’t tell anyone where they are from. Hey, I have my past, I volunteered in high school to take pictures of a dissection at Uni of California. I actually made them do three brain dissections from killing the mice to final cut just to get the shots right. The school escort came up and told me with an odd look, “I think you’ll make a great camera-person, you’re completely……heartless.”

Regarding #12 – the climbing thing, this is something Linda does regularly, and here, on our last bike trip a week ago, she decided to climb up on a garbage bin to see if she could get a better angle of me with the trees and the river, I made her give me the camera before she got back down.

Anyway, from the quiz below, #19 – taking a pic of your partner in disaster: here I am at the tip point for my chair, I went for a backhand for a ball behind me, I realized I was tipped too back and am now trying to lean forward to counter it but in another split second, I will be on the ground and flipped backward out of the wheelchair. Linda’s comment, “Things just look different behind the lens, you kinda forget that, ‘oh yeah, I guess I should go help her up.’”

The second pic is from the January 07 tournament when I first started getting sick. And I was REALLY sick here, so much that I don’t remember several points and in the end, I had to be held upright by my opponent to keep from slamming face first. We now think that I was unable to feel my own body temperature as well as having no regulator on oxygen (so oxygen deficient and overheating). Linda stripped me of all my epee competition wear, then, while my hands and my face are SIGNIFICANTLY different colours (and the competition was still going on), I am barely conscious, so she decided to take a picture?

And finally is the ultimate example of what Linda will do for a good (admittedly a GREAT picture). Yes, that is a real leopard. Yes he is awake and irritable. And no, I am NOT taking that picture (some guy used our camera), I am FAR away from large kitty, not the one virtually putting my fingers in its mouth (picture taken in far off land where they still let you do insanely dangerous things.....for a dollar).

Sunday, October 21, 2007

Are you a Camera Whore? Take the test!

Oh, Linda and I are SUCH camera and photo whores. We got back from a couple days away, literally 1.5 days of vacation in Port Townsend, WA to return with……258 pictures. Yup, we go places to take pictures, and more pictures. I hope tomorrow (or soon) I can explain why I had to add moderation to comments (It is not against any of the people who comment – I LOVE comments!). Until then, take this my little quiz (or add questions to it) to find out if you to are a CAMERA WHORE (and see some pictures of historic Port Townsend):

1) When people ask you, “Did you see anything good on your vacation?” do you reply, “I’ll let you know once I upload my pictures onto the computer.”

2) Did you buy that digital camera because you used the excuse how you “would save so much money” on developing?

3) Did you actually save hundreds to thousands of dollars a year on developing by BUYING the digital camera?

4) Do you take two pictures of everything....just in case?

5) Do you know where the sun is at all times in order for you to choose shots where they are lit best?

6) If your vacation is cloudy, have you ever actually run to multiple locations as quickly as possible when the sun has burst through for five minutes in order to get as many pictures as you can in sunlight?

7) Have you ever held your camera "casually" peeking through your jacket in order to take pictures at a place where picture taking is EXPRESSLY FORBIDDEN? (And then excused your behavior by saying, "But how couldn't I take a shot of that?")

8) Have you ever tried to arrange people doing business like at a farmers market for “better framing?”

9) Have you ever shamelessly entered a building, and asked a complete stranger if you can take a picture of something you’ve seen through the window?

10) Have you ever been advised AGAINST taking your camera someplace and done it anyway? (like going kayaking?)

11) Have you asked your partner to distract a business owner so you can sneak in and take pictures of rooms and/or fixtures?

12) Have you ever climbed atop things like dustbins or walls in order to get “just the right angle?”

13) Do you take your camera with you while walking the dog, taking out the trash, going to a funeral, just “in case” you see a good pic?

14) Have you ever asked anyone to take you and your partner’s picture and then started a sentence, “Can you make sure you frame it with.....”

15) Do you feel, deep down, that something you did unrecorded by camera isn’t quite as real as things recorded?

16) Would you consider not packing enough batteries/memories cards a disaster on the scale of not packing your medication?

17) Have waiters/managers in restaurants asked you to return to your table/stop crawling between the pillars because you are looking for “the right shot?”

18) Have you taken an entire “alternate” version of your holiday pictures done black and white or sepia pictures?

19) If you happen to take a picture while your partner trips backwards and fall overboard, their face filled with terror, their body frozen halfway to the water arms outstretched, is your first thought, “What a lucky shot!”?

20) Do you have more pictures on your computer than MP3 files?

21) Have you almost been run down by cars while you stand in the street in order to get “just the right angle?”

22) Have you been chased out of someone’s garden for the same reason?

23) Have you ever tried to get your partner to stop on a highway/freeway/bridge with traffic behind them because “That’s a great shot!” (Linda once tried to make me stop in the middle of a ONE LANE bridge in the Dartmoors)

24)Have you ever taken a picture in an entirely dark room in the hopes your flash will get a great pic? (The cinema photo was taken after we had begged (with wheelchair and puppy eyes) to be let into the restored cinema. The room was totally dark, we couldn’t see each other and we kept shooting and readjusting the camera angle entirely by the digital display of the last shot)

25) Have you ever, on vacation, gone back to every place you went the previous day to re-shoot the pictures from yesterday because “the light is better?”

(Bonus) Have you ever explained to complete strangers how to use functions on their digital camera they didn’t even know were there?

So how was your score on Camera Whore? I got 25 out of 25, plus the bonus (Linda got 22 out of 25)!

Thursday, October 18, 2007

Neurological Conditions: when everything turns blue

I see blue, it is one of the odd side effects of my neuro condition when I get tired or before/during a major attack; or rather the whole world takes on a blue tint. I suppose if I had a choice between being “blue” or “seeing blue”, seeing blue isn’t that bad.

I first noticed it a couple months ago at the end of the sailing program (the one where I was ambulanced away) and kept saying; “Blue……blue……blue.” One of my eyes has always been a bit blue dominant and the other a bit yellow dominant but only when I have high fevers (like 103-106 degrees) does it get to the point where I can close one eye and the world is tinted blue and close the other eye and the world is tinted yellow (close both eyes really tight and it is sparkly!). I have added two pictures from our trip on the Sunshine Coast, BC. The on top is what the world looks like (if you can believe the disposable camera) while the picture below is similar to what I see (if perhaps even more blue).

This means the clouds are blue, and anything that might normally be grey (like pavement) and other similar dark colours becomes blue. These days, if I have a few days where I push myself physically or don’t get enough sleep then occasionally, before I sleep in the afternoon I will have a “Blue” episode. Earlier this week Linda was pushing me down the street and I was pointing at things and saying, “Blue” and she was saying, “No, that’s dark brown.” I point, “Blue!” Her: “No, that a sort of green.” It is easier for me to tell that the visual effect has happened outside because when the entire clouds cover is blue, that’s a pretty big clue.

Inside, in a darkened room however, it can sneak up on you, as I told one of my home care workers, “That top really looks good on you, blue is a good colour for you.” They looked at the top, they looked at me and said, “It’s not blue.” Eeeep! “Well,” I said, “What I see looks good, and after I sleep, I'll see if THAT colour top looks good too.”

My only problem is that I can’t seem to find any other cases of “seeing blue” as a neuro symptom and I feel rather embarrassed bringing it up since the few times I did (to some people with MS and a person with parkinsons’) they gave me funny looks. Oh well, on the one hand you might not want me to do the colour co-ordination for your wedding, but on the other hand, I do like the colour blue so I am sure to compliment more people on their good taste as time goes by.

Please let me know if you have any odd tics, visions or other (I do have the traditional double vision, partial blindness, inability to focus as well – just not as interesting!)

Tuesday, October 16, 2007

My assisted mental breakdown, idiot guys & some goth girls

Sometimes (like in my life), there are so many pressures and so much abuse within a limited framework that it is hard to have any perspective at all. It becomes difficult to not start thinking of these incidents as connected, while in fact, like most acts of evil; human suffering is more often caused by individual apathy, greed, following orders etc, than any combined plan. And the people involved are probably more interested in their weekend plans, TV, an upcoming wine festival and such than the metaphorical grenade they launched into your life.

So I am not going to talk in detail about much of what is because a) While it may have a riveting terror factor for me, I seriously doubt it does for anyone else and b) because several people regularly read this blog in order to find information about me which they can use to their best interest, not necessarily mine.

But I will tell you about Cool Aid Society Victoria, which is privately funded and helps and medically treats street people, drug addicts, those vulnerable in the sex trade and those with such severe mental illness that they are refused treatment anywhere else. The also run several HIV trials – more for the addict population than the gay one. Now, as I mentioned on Friday, after a long discussion with management it was decided I would be accepted “with conditions” because I was merely very ill and no one else would treat me as opposed to being a drug addict, sex trade, etc. I was too “vanilla” for them. Then Doctor A had this weird breakdown regarding birth control pills and his “personality and belief conflict.” But, he assured me, I WAS a patient at the Cool Aid Society of Victoria just not HIS patient but he would refer me to Doctor B. Doctor B said they could “theoretically take me” but had such a large case load everyone decided Doctor C should take me.

Today I get a call from Doctor C. He tells me that he since I don’t particularly fit the model Cool Aid was created for that he feels it would be best if I went to a place called Synergy Health Management which is accepting new patients and was more for ‘people like me.’ And that the waiting room and such at Cool Aid would not be comfortable for me. I pointed out that I had been trying to get a GP to make me a Task 2 home care patient for months without success (meaning home care can give your medication, apply cold packs when I overheat and give me oxygen - all requiring a doctor's instruction to the home care company) and Doctor A, who turned me down, still managed the calls and the paperwork to get it done in FOUR HOURS. I also told Doctor C about the HIV trials that I knew were currently ongoing at Cool Aid and thus I was not the only potentially terminal chronic patient. We did a little verbal dance and he agreed to see me next week. I made him laugh when he asked who my specialist where and I told him some and then said; “And my heart specialist is, wait, I think it is Dr. Novak, it is just that sometimes He and God get confused on who is who.” (and your likihood of getting either on the phone to speak to you is about the same)

I got off the phone and I called Synergy Health Management, whose two doctors who are highly rated have moved down from Terrace, BC. They rejected me about a month ago, telling me there was no point in getting a first visit to see them. After being on hold (and hung up on) repeatedly, I talked to the administrator today telling her I was referred to them by Cool Aid and I had talked to Synergy a month ago. I told her I would need a GP for home care instruction, disability application and such. She said that Synergy was looking for new “healthy” patients, like families and people who might get the cold. I confirmed, “So, you don’t want any terminal care patients with paperwork?” She said yes.

I called Cool Aid back, left a message for doctor C to let him know I did call Synergy again and what they said, I added that Synergy would be happy to receive any referrals from Cool Aid of essentially healthy patients or young families who might get colds and such. “How silly!” the Cool Aid administrator said, “Why would they think we could send them that, we don’t treat those types of people here.” Ah, yes. How silly indeed!

Ironically, a (imaginary) patient who had a mental health problem which made them so angry at doctors all they could think about is strapping a bomb to their chest when going for yet another draining and (as yet) useless first visit would be the ideal candidate for Cool Aid. I did not have this particular mental health issue when I started looking for a GP, however, I believe the way VIHA and the system here operates, Cool Aid should have faith in their ability to drive me into a serious mentally ill state.

Oh, as you see, I have gone on a bit, and that was but an hour or two of my rather exasperating life. I wish to think now on other things. Which for this minute is looking at goth girls, and lesbians and both. Sort of my version of “here are a few of my favorite things.” To amuse you between staring at the pictures I will tell you two anecdotes for today. The first was my taxi driver who was male and about 28 and we talked a bit until he said, “I just don’t understand it, you are pretty and intelligent and funny, how can YOU be in a wheelchair.” Once I choked that one down, I actually tried to explain that neuro conditions aren’t something you order like lingerie or collect (like skulls). He just said, “But, when you talk, you are really funny, and it is clear you are intelligent, from all the stuff you say, how can YOU be in a wheelchair.” I kinda left it at that, I am sure if I blinked my eyes a lot and said “gosh golly” I probably could have gotten the taxi ride free, I just couldn’t figure out how, without a pickaxe, to get into this guys head that being in a wheelchair doesn’t mean you are stupid, or that looking obviously different isn’t a requirement either.

My second story was actually some older guy (60’s) who was doing his “I’m going to be so nice to the younger generation” and talking to some people in their 30’s. I rolled by, he did his oozing condescending, “And how are you dear?” I gave him a thumbs up because truth be told I was feeling like crap and nauseous to boot, but I never let people like that know it. So he imitates my thumbs up and starts telling the able bodied people that Winston Churchill had inspired the British People with the thumbs up sign and it had been linked with a plucky spirit ever me. This was one historical inaccuracy too far and I rolled back to him and did the V sign. He stared blankly. “V” I said. “For Victory.” He stared blankly. “Winston Churchill started the V sign which was synonymous with Victory in order to keep up the spirits of the people which is why in occupied UK, Jersey, they would print one diagonal on one page and the opposite diagonal on the next so when you held it to the light, you would see the V sign and have hope.”

He had an open mouth for a while but returned with full smarm, “That’s right, I forgot that, and I was there. And you little lady, weren’t even born then. Golly, you sure must have an interest in history.” I tried to overlook the fact that he was talking to me like I was 11. I really did. Then he asked what I did. I told him I write. The cheesy smarm came full bore with, “That’s so good, keeping your spirits up. Good for you!” he said it the way someone does with they are about to promise to put the picture you painted in class on the fridge. He put his arm around me, “Good for you!” Luckily I was too weak to do more than give him the reversed V sign (which you make with an upward thrust and is VERY rude in the UK and Europe) and started to wheel away while he was still calling after me, “That’s right, V for Victory my dear, V for Victory!”

As a warning, looking at goth girl images may be mentally damaging as this Daily Mail article indicates. I presume the article was co-written by some Baptist/Evangelical/Fundie type who had too much "Jesus" (which I have ever assumed is the code word for LSD: "I've been feeling the presence of Jesus all day!"). It claims that goth is bad and that Emo is a "dangerous teenage cult", which can be spotted by the bands they listen to (Green Day is now "Dangerous".....they wish!). The article also pushes the idea that Goths are sexually unthreatening and thus worship "boys who look like girls"; "Teenage girls are frightened of manliness." Yeah, because guys taking of t-shirts in summer whether they should or not is definately I thing of the past, NOT! (Oh God, why do you not answer this one simple prayer and stike them down!). In the age which now celebrates the "retroman" revolt from metrosexual, I hardly think we are in worry of "manliness" disappearing anytime soon. And if goth girls are sexually unthreatening, they just aren't doing it right - that's what I tell the old ladies next to me at the Oak Bay Tea Room which I reach to the back of my PVC corset, pull out my knife....and butter the scones.)

Friday, October 12, 2007

A ride in Autumn: no brakes and posing with things you stomp on

To say that my week got worse (and surreal) would be an understatement, particularly when you are sitting in a clinic for homeless and street-workers and your "last resort" GP doctor suddenly reveals that he has a “personal conflict” with people who take birth control. are at an inner city clinic, you treat sex workers but you won’t give birth control or treat people who take it?

At times like this I like to focus on the good things, which was Monday’s ride through the autumn foliage. It was Canadian thanksgiving weekend and I was determined to have a) a bike ride b) sex and c) not at the same time. While rain came all Saturday and Sunday, Monday was overcast, but not liquid, which was close enough.

Linda was trying to find “nice rides” which meant short rides where I didn’t end up screaming later from pain. Bah! I told her I wanted a “real ride” and we choose The Goose, which is a bike trail that follows a green corridor through and behind the city. We had to bike through downtown first to get there (I did of course, later end up screaming in pain at night, but hey, that's what home care workers are paid for, right?).

Having a handcycle or wheelchair bicycle, particularly an upright one definitely makes you stand out, as you have to pump your arms like loony tunes to get going. And when you have to take your hand off the bike arms to shift, there is a lot of momentum lost. Do not fool yourself; legs are way more efficient than arms. If you don’t believe me, just trying walking around on your arms for an hour or so.

The good news was the sun came out, the leaves were turning the colors of death, I mean picturesquely turning orange, yellow and red. Linda says that my idea that this is a leaf’s cry for help, a desperate flashing of color to scream; “I’m dying! Save me!” is the product of an overactive imagination. The Goose crosses wooden bridges, goes along streams and generally makes you think that you are not in the city at all. Not to mention, the sides not in fall colors are filled with the end of summer blackberries. Linda picked some and we ate them.

In some of the overpasses a few people were tented out. Victoria recently was part of multi-city survey in which cities are rated 5 in areas for "awesome" and 1 for “do something!” Our city didn’t get a single 5 rating but the paper patted itself on the back for the things we scored well in; things which only demonstrate the ever increasing have/have not divide in the city. We spend more on concerts and volunteer a lot (at gallery openings), the median household earning was 67K. I said to Linda, “I didn’t realize we were “poor” until that came out." Geez, when “average” is 67K......what kind of city is this? Anyway, there were six areas the city got a 1.5 (which is supposed to be a kick up the butt – only the paper didn’t really cover them as they had headlines like “We go to more concerts!”). Victoria as a city has the LEAST percentage visible ethnic minorities of cities in Canada. White to the core! I guessed that the one time we went to church last month and they met afterward in a tea room which had a wall long display of Golliwogs (caricature dolls which were originally taken from blackface in the 1930's). We also have the highest rate of child abuse; we have the highest rate of teens who don’t finish high school (over 30%!), we have a lack of affordable housing and wait lists for subsidized housing for people with income shortage and disabilities dating back to 2004. We also have over 10,000 women who could work, if there was affordable daycare…but there isn’t. And we have a huge (over 1,000 downtown) homeless population of which the only thing the city has done is recently pass a law making “loitering” a $115 fine. Ironically, someone giving me a ride in my wheelchair was charged because their car was parked over the time limit (essentially vehicle “loitering”) and paid: $20. So, if you are going to be homeless here, please bring a LOT of money, so you can pay the fines. Yes, Victoria, BC is a city of rich, mean, white, smug assholes. Sorry.

Yesterday, a Victorian who rents apartment was telling me about a friend of his who was very distraught about what is happening in what used to be Burma. This Victorian pointed out that life was pretty tough for the homeless right here. His friend said, “I don’t believe the homeless issue.” He and I both sort of repeated that line, “I don’t believe the homeless issue?” I assume you need to cover your eyes and do “la la la la la la” while saying it. So, yes, even on the green belt we saw people, mostly guys, with tents or bags. One of them offered to take our picture together by a row of trees planted by the river. We have hardly any pictures of us together because we are always taking pics of each other. So while the idea was welcome we admitted to each other later that our first thought was “Is this the last time I see our camera?” Instead he got a nice pic, wished us a happy day and we all went back to enjoying the sunshine.

I was pretty nauseous and Linda eventually convinced me that it might be good to try and save some energy for going back. Actually it was the fourth time she suggested it but the other times I was still strong enough to get a wild look around the eyes and mutter; “Never give up; never surrender!” So we had our hot chocolate and junior mints (it was a very 7th grade sort of picnic) and then came back, again, loving the downhills and the scrunching sound of all the fat dried brown leaves. It almost made me feel like jumping into puddles, if that were possible; that childhood autumn experience where suddenly everything makes noise....when you stomp on it.

I had almost made it to the wooden slat bridge when I looked around and Linda was GONE. So I waited and finally she rode up holding some fallen leaves. She thrust them toward me saying, “It’s Thanksgiving!” (Canadian Thanksgiving). I just stared at the leaves. “If you hold them,” she told me, “and we take a picture, people will know it is Thanksgiving.” I wasn’t exactly following the logic but since a) Linda loves taking pictures of stuff and b) I love Linda; I ended up posing by the water holding the ‘thanksgiving’ leaves in what I would consider an “artful” pose (would have been a lot more “artful” if she had let me pose nude like I wanted – that’s what says “thanksgiving” to me; dried leaves AND nudity).

I bounce along the wooden bridge, up the platform and down the other side when I realize something rather important. I don’t have brakes anymore. Eventually I find an uphill, inform Linda and we check out the bike. There is now a cable which connects to....nothing. We think this and the ‘no brakes’ are more than coincidence. Linda goes back to look for a bolt. I try to figure out possibilities. The bike still has an autolock when it rolls backward. Linda returns having found nothing. We forgot the cell phone at home. While Linda has been away I have been trying to figure out a route to get back home which involves going slightly uphill the entire way. This is because we have to go through the downtown to get back home.

We route a path that has minimal lights and is mostly slightly uphill. And we start back. It is pretty terrifying to realize that anyone who steps in front of me or a car who pulls out or ANYTHING and I will hit it, and probably break both ankles and a few other bones. Plus, due to the nature of the bike (three wheeler) if I try to make a sharp turn, it will do a flip which will plant my face right on the cement before skidding it along awhile.

Of course, long weekend, us having to go through the most populated streets (as they are slightly uphill) and with the tourists I am the central attraction of every street. Literally, hundreds of people staring at me. I have been using my all leather gloves on the off-road tires, using hand friction to slow the bike down (see pic), alternating my hands to keep the tire from burning my hand. A city tour-bus slows besides me so everyone can get a look. Inside I am screaming; “I HAVE NO BRAKES IDIOTS! Not a tourist attraction!” (although in this town…who knows). Linda was riding ahead and then waiting at each intersection to literally catch me if I couldn’t stop. Another tour bus decides to pace me sitting parallel to me in the car lane, I pump arms like mad to leave them behind, they speed up, I slow, they slow. I am sure there is a Monty Python skit in this somewhere.

We make it home. I say to Linda, “I know my motto is, ‘Nothing is Impossible’ but.....let’s not keep pushing that motto EVERY time." She agrees. Still, it was a great ride through the sun, trees, water, nature and of course, crazy tourist buses. So for those who have had it and those who are looking forward to it, Happy Thanksgiving.

Wednesday, October 10, 2007

Beth tries to find a GP doctor; and gets close, if only she was pregnant

I have now become slightly obsessed after spending the entire morning calling every doctor number on the Victoria Island Health Authority and Victoria Medical Society List in my area:

#1) Dr. Luco – the administrator said he would consider me but then asked, “Are you on any pain medication.” Considering that I needed two VERY strong painkillers to sleep 4 hours and then another to sleep a few more last night I said yes. “Oh, the Doctor will accept no patients who take pain medication.” ?????

#2) Was referred to Dr. Rhone, who, if stories are to believed, does not believe in pills at all, to the point of refusing to prescribe birth control. I decided not to book an appointment

#3) Dr. Perera – a doctor who just graduated this year. She is interviewing and screening all patients. Do I want an appointment? I say yes and the first appointment is December 10th 2007. The administrator says it is at her home. I ask, “Is it wheelchair accessible?” The answer is no, there are stairs going to a basement suite. I ask, “Will she see me outside, in the driveway?” No. The administrator asks, “Do you still want the appointment?”

#4) Dr. Chandna – A very helpful administrator but who tells me that Dr. Chandna won’t see me as she is not in the office. She has a child and “her lifestyle is incompatible with patients with chronic conditions.” I am “incompatible” with her lifestyle? The administrator tells me that a very good male doctor, Dr. Friesen (sic) was taking new patients but is no longer. She explains to me that most doctors now are general practitioners and want to work with healthy people. I say that since my condition is so rare, that might be seen as an opportunity. She tells me not to think that way, as in order to treat me, a doctor would be taking time in which they could “treat” several other “healthy patients” which is what doctors now prefer.

#5) I ask her when I can call Dr. Friesen, since he was just taking new patients. She says next year, or maybe the year after that. This is the end of the Victoria Medical Society list of doctors taking patients

#6) The James Bay Community Health Centre – I was recommended to go here by my Neurological Physiotherapist. I called a month ago and they said to call back in January 2008. I thought I would plead my case with them to take me early. The administrator says the Clinic is not taking new patients before April 2008 and I should try the list of doctors taking patients of the Victoria Medical Society. I tell her that I have but…. At that point she shouts, “There is no help here!” and hangs up the phone mid sentence.

I go to the list from the college of surgeons. The newspaper has recently done an article saying how B.C. is the only province where a patient cannot see what charges have been made or what disciplinary steps have been taken against a doctor unless it goes to the severe step of tribunal, which less than 1% of the complaints do (the second most recent complaint is of a doctor who sexualized their patient by making personal comments on their appearance and personal life on two occasions – he has to now have a chaperone while examining the breast and pelvis of all female patients and pay $3000). Before I can access the list of doctors willing to take new patients, I have to agree to a waiver and disclaimer which states (among other things) that “The College of Physicians and Surgeons of British Columbia does not assume responsibility, nor will it be liable, for damages incurred from use of or reliance upon information contained in the online directory.”

Cross referencing with RateMD, it is hard to find one doctor on this slim list that gets a score above 2.5 out of 5 which includes stories of a doctor delivering a girl and then asking the father he wanted the baby circumcised now or later at his office. I am thinking I need a bit more competency than this.

#7) I find Dr. Isaac, who not only has top ratings but also has experience with Neurological conditions. I call to book an appointment. I am informed by the receptionist that in terms of “new patients” he ONLY will accept maternity patients. “But I hear he has neurology experience…” The administrator agrees, but no. “What if I come and beg?” I ask. She tells me I can as he has a walk in on Friday mornings. “Has he ever accepted a patient who asked him at the walk in clinic?” Her answer: No.

And that is where it is at, I could I suppose call the doctor who now needs a chaperone; probably he will be accepting new patients...or maybe not.

Linda has suggested that we take out an ad in the wanted ads or the employment section of the newspaper. That's starting to sound not so crazy anymore.

P.S. - Dr. Perera - I go to beauty and other clinics which are in-home and they all have been made wheelchair accessible for me. So for a doctor to have stairs not only eliminates those in wheelchairs but walkers, scooters and other assistive devices. Thus, only the people who are fit enough or non-disabled can access the GP clinic and obtain medical treatment. This seems wrong to me. Why not throw in a few walls to climb over too and eliminate all but athletic patients? I did ask if she was planning to put in a ramp and they said no, not anytime soon.

Tuesday, October 09, 2007

"There is nothing I can do for you"; a (very) bad day

Okay, I got up early this morning in order to call the only current GP clinic in town who will take me as a patient, now that I have the (provisional) terminal diagnosis. This is a clinic which “can’t” turn patients away because it is there for the homeless, addicts and other people who socially undesirable (or too transient to treated at a normal GP). The clinic opened at 9:00. They don’t take advance bookings. I called at 9:45. They were already booked for the day. I told them I needed to book wheelchair transit to get there. They made an exception on the advance booking. I would get the first available booking. That is this Friday. So, that really wasn’t a super start to the day.

Because I do not have a GP I had to go to a walk-in clinic today to get some diazepam, which I use for sleep aid and for needle phobia (since I can’t wait until Friday). At 60 mg for one long blood test, I tend to go through it fairly brisk. The local walk in clinic will not take me on as a patient. I asked. The next closest walk in clinic agreed to take me on as a patient, then received the letters from the specialists with my (provisional) diagnosis and immediately sent me a letter saying, “Thanks for meeting with us, but we cannot serve your needs at this time.” But I still need meds and since the local walk in clinic doesn’t have my files, I have to carry around what specialist letters I have in order for them not to think I am a drug addict (seriously). Even though I offer for them to a) take me as a patient and thus have ALL my files, or b) call my specialist to confirm, they instead want to know why I don’t have a letter from specialist X or when am I visiting specialist Y? I hope it doesn’t surprise you that not ALL my specialist give ME copies of their letters, most they just send to my medical file. But that surprises the doctors who think I am some diazepam addict. In the end I get half the prescription I need and I go to the pharmacy to fill it. The pharmacist knows my (provisional) diagnosis and is fine with it, however when I mention who my defacto GP’s is (the homeless clinic) there is a look on her face like I have told her “So, I am buying up used needles on the street to inject my meds with.” A look of total horror. So, this Friday should be interesting (it is my first meeting where they have “agreed” to take me as a patient – if they reject me then I really will have no GP; much as I have not had one for three of the last five months).

Of course, many people believe that GP’s don’t simply dump patients or refuse to treat them. Errrrr…yeah. All a GP needs to do is say, “This is really out of my area of competency and I can’t give you the best care.” And presto, they are absolved. They aren’t treating you because to treat you without knowledge is not “proper care.” Of course if you have a 1 in a 100,000 condition like I have been (provisionally) diagnosed with WHO DOES have the knowledge? No one it turns out; so you get no treatment at all.

Casdok also found out, with her autistic son C. that GP’s wouldn’t touch them. So it is not just me. I think it is anyone which requires research, education, follow up, intensive care…you know, more than your 10 minute appointment.

I also was there to pick up the antibiotic for my tooth. It seems that in my obsessive tooth care (remember I am needle phobic hence also dentist phobic), my flossing pulled out a bit of tooth which now needs a crown….or a root canal….whichever. Well, they are going to put me out for that and it was all supposed to happen over the next two weeks; which is why I am taking the antibiotic now.

I get home, it is the dentist. They have changed their mind, it will be a week and a half until the “check up” which the dentist has told them to book “several hours” (gee that sounds fun!). But with the anesthesiologist needed for the crown…or root canal…whichever (that’s the dentist’s words, not mine) they are looking at Nov/Dec. Oh fun, and after I had him “grind down” my tooth on Saturday without any sedation at all (the couch still has five dents on each side from the grip of my fingers).

But wait….the mail has arrived. I had wondered why, after my last blood test, my endocrinologist specialist hasn’t called me in. But here is a letter from him. I don’t think that will be good news.

The letter is pretty cheerful because the endocrinologist has completely confirmed that I have autoimmune thyroid disease. He knows this because not only was my TSH high before but this last test showed that while my antibody or thyroid APO level SHOULD be at 35 units or less, mine are at 948 units per litre. Let me say that again: should be at 35; mine is 948. The conclusion is, my immune system is destroying my thyroid and I have hypothyroidism with fluctuations into “normal” (with low free T and lots of autoimmune fighting). The solution according to the letter: “Such fluctuations may last up to one or two years….in the meantime, nothing can be done”. Medically that’s not true, because since 2001 studies have shown small amounts of thyroid hormone given in treatment can slow the death of the thyroid and improve the quality of life (but I would need to find a new GP and specialist to give me this treatment). The thyroid produces hormones which help convert oxygen and calories into energy. So with Hypothyroidism you don’t get enough energy, you are fatigued, you are depressed, have mood swings, have a gravelly voice (due to a goiter), your hair falls out, you have difficulty concentrating and you gain weight.

The endocrinologist is happy for another reason. He no longer has to deal with me because whatever is wrong with me is clearly NOT predominantly hypothyroidism. For example, hypothyroidism makes you overly cold, while I am extremely heat intolerant (and can’t feel what parts of me ARE cold); hypothyroidism makes your heart slow down, while mine, as all test have conclusively shown, has sped up and is erratic. Hypothyroidism makes you constipated while I have well…the other problem. And while it may have an effect on why I can’t get enough oxygen, it isn’t the cause. Also, people with OTHER autoimmune diseases are more likely to have autoimmune Hypothyroidism. So I am “Someone else’s problem.” While my hair will fall out and my skin will get coarse and scaly and I will likely have constant “feelings of sadness” and “feeling of worthlessness” (and other hypothyroid symptoms) – it is back to my non-existent GP to check me regularly and then, once the thyroid is good and dead, actually start treatment. As I said to Linda, “How is it possible to get SO MANY things that can’t be treated?”

So, will still continue sleeping 11-13 hours a day, will still have muscles unable to heal (oh yeah, the PT trained in neuro-patients said that my muscles are breaking down and not rebuilding and thus I am in a sort of increasing constant pain. By evening this includes breathing as the muscles between my ribs are strained and I must sleep in an elevated position), just living strains my muscles and they are VERY slow in getting better. At least the PT said “I’ve seen this before” which was followed by a look on his face which said, “Don’t ask” and finished with, “There is nothing I can do for you.” Those are eight words I am really tired of. So, I am not to go back to him either.

So, after reading the letter and tired of feeling totally helpless, I called up a doctor that a home care worker had said was “good”; just random dialing and explaining to a office administrator in hopes she would ask the doctor if the doctor is interested and then MAYBE the doctor will call me back. With this administrator at least she said she would “talk to the doctor” which is the furthest I have gotten in four weeks (I do the random dial-up every week). That’s how I am trying to get a GP, since none of the six GP’s on the list of “taking new patients” are willing to take ME.

And, what’s better, my home care didn’t come. I waited but it turns out they had taken my home care person to cover someone who was sick but didn’t call me to let me know.

Actually, the day got worse after that. But this is as far as I talk about for today. Seahorse over at the Beauty Offensive had a day where she got to the moment they were to take out her wisdom tooth (and the weeks of prep she had done for that) and then…because of her chronic condition, they changed their mind….while she was in the chair. So I felt, “hey, I’m not the only one this is happening to!”

Sorry this isn’t all witty, if you want that, go to the BBC link in the post below. I am just so beat down right now, I don’t know what to do. So please remember…if you are Canadian, get some quick and obvious problem like a heart attack not some fucking obscure life draining condition which no one wants to touch with a barge pole. And for those who have been waiting on the sideline of my life for God or some other miracle to whisk me to normal: I have had three months of tests in order for one specialist and one doctor to decide that one of my organs is dying and that they will watch it die for the next two years with no positive treatment and they consider it A JOB WELL DONE. And that isn’t what I consider the “BAD” part of my day.

Signing out

Monday, October 08, 2007

And this collective 'knee to the balls' is dedicated to...

My most recent post over at the BBC is up; and I managed to finish it before the end of Canadian Thanksgiving. If that post doesn't make people pissed off, I don’t know what will (it is of course, entirely true, making it all the worse!). I dedicate it to fellow Canadian Dave Hindsburger over at Chewing the Fat who inspired me out of my lull by asking “What would Zed do?” (Knee them in the balls, of course!)

Sadly, I am probably putting him under investigation by saying that particular post was inspired by him. I almost feel sorry because while Dave is clearly on the “Good” side of humanity, people complain of the smell of sulfur wherever I go. A good long post about Thanksgiving and riding a wheelchair cycle without brakes tomorrow (no, that’s not a metaphor.)

Friday, October 05, 2007

Black Snake Moan: debasement to meaning

Yesterday I saw the film Black Snake Moan, which I was embarrassed to rent (according to the trailer and the cover the entire theme is: black man chains up white nympo woman), I enjoyed way too much and I was envious that I hadn’t written it. Obviously the writer and actors got screwed by the marketing department who decided that it should be advertised as an exploitation film with the catch phrase “Everything is HOTTER down south.” The actual film is about damaged people, sexual abuse and how to find something to hold on to when your mind itself is tearing you apart. And yes, I got to see Christina Ricci in a chain and undies. Not only that, it was the chain that she chose from many other chains for herself and refused to have a “fake” double chain during shooting. But then Christina Ricci has a drive for playing damaged and marginalized people. (Yeah!)

The writer really puts the material out there on the honestly unpleasant edge. It is clear that while Rae (Ricci) has been sexually abused and has a overwhelming desire toward debasing herself into oblivion, it is also clear that she wants a strong male father figure who protects and sets boundaries for her. She finds this person in Laz (Samuel Jackson) who, once she has tried to prove he is like every other male (that he wants sex with her too) several times without success, she actually gets more intimate with him. She curls up around him, she lets him bath her, she reverts to some child-like state of fantasy in protective daddy-land while at the same time, dancing in a blues club she allows herself full range of her sexuality in dancing, all the time throwing glances to Laz that this is ‘all right’. She allows herself to be sexual without having sex because she has a center upon which to hold. Of course, this is all dangerously unpleasant viewing, real squirm or laugh or in some way distance-it-from-me kind of stuff. Because older men left by their wives are not supposed to channel their own pain into trying to cure someone else’s, particularly in a “don’t give a damn” way that can easily misinterpreted (as having a white love slave). And full adult females aren’t supposed to be happier because someone is telling them, “Don’t act that way. Don’t treat yourself that way.” They aren’t supposed to relive a fantasy childhood with some older stranger; particularly in Mississippi, particularly when one it is a white woman and a black man. But of course, these are the very things that do drive people in real life. The desires for debasement and protector in an abused female are as strong as a male trying to make meaning out of a stable life gone to shit by focusing on almost anyone but themselves.

So yeah, I really wanted to write that script. It was very out there. And seems to have been either loved or hated (with the hated usually going directly after the writer/directors with statements about their deviance, shallowness or other personal defects).

In case this is news to anyone; writers, directors, actors and pretty much everyone else put on a pedestal are just as screwed up human beings as you are. While America demands perfect people to hold up, all they can be given are perfect LOOKING people, ala actors. This is why I like the visual honesty and diversity of UK acting. Can you look at Robbie Coltrane or Helen Mirren and not think, “Yeah, I bet they got a bunch of hang ups.”

As for me, I woke up this morning in a fantasy that I was performing “the butterfly.” ‘The butterfly’ is an elaborate series of cuts and stabs that go down the torso; a sort of self-harm artwork. I haven’t don’t it yet, but waking up aching for it means a) I am feeling a severe loss of control and b) I really need to come up with a plan for the winter. A few people might think that coming up with specific self harm designs is a little…peculiar. Well, I feel that if I am going to fantasize about cutting, I might as well be artistic. I mean “cut, cut, cut!” gets a little boring, ne? If you want to know another of my designs that I actually brought to fruition, it is in the book Zed. And no, I don’t do commissions.

Ha ha. I bet you are really wondering whether to trust that movie review now.

Tuesday, October 02, 2007

Atrophy versus 'The best of days'

Sunday was the Victoria 5K for Breast Cancer. The forecast was for heavy rain and 40km an hour winds. We went anyway. Linda and I had a pact; one we made in May when my PT had told me that a) it would be “impossible” for me to do a 5K in the manual chair as I would be too weak and b) that if she heard any more about this kind of self destructive talk maybe she would force me to get the electric wheelchair. Being me, I immediately planned (in secret) to do a 5K race (and a 10K). I told Linda. I did 5K training wheeling, first up to twice a week, then once a week, then once every two weeks, then not at all. Ain’t prophecy a bitch?

So I missed a bunch of 5K’s and 7K’s because they were too far away, or too many hills. I missed the Terry Fox run. But I still had the breast cancer run.

You know someone with breast cancer, or who has had breast cancer; they may not have told you, but you know someone; it is that common. Indeed one of the things I dislike about the public perception of breast cancer is that it is “common” or when someone says, “I have cancer” the thought is; “geez, that’s horrible.” When they continue with breast cancer, the thought is, “That’s lucky!” Yeah, breast cancer is the “good cancer.” Well, I think any time you have to choose how much risk versus how much body part/part identity to cut; it is not “good.” Chemo isn’t good. In the Harpers 2007 article Chemo World, the memoirs of a nurse on a cancer ward tells how the head nurse ended up with cancer and how she got her chemo on Wednesday. And by Saturday she would start feeling fine, and by Monday night, she would start crying. How Chemotherapy is so toxic that for some cancer patients just seeing the nurses coming in with the special suits and chemo drip pump caused a body memory that would start them vomiting before the chemo even hit their system. So yes, lumpectomies, and success rates aside, I don’t think of it as the “good” cancer.

But I wasn’t there that cold and windy morning because of a memory of a friend; I was there because I was incredibly angry and incredibly scared. Nothing like race day to make last minute calls of the bathroom. I was scared that the PT was right, that I was too weak, that I would not finish; that even if I was willing to incur a painful price on my body that even more choices had been taken away and I didn’t even know it yet.

I was in the front of the 5000+ people with Linda behind me, the top runners in front of us and I behind them on the basis that it was far easier for them to run around me than vice versa. I started playing the MP3 player with its heavy beat trance music. If you don’t have the training, then get a machine with enough bass so that you can fake it. And we were off, I was cruising so fast that I am just a blur in the front corner of the picture.

I wish I could explain the overpowering anger that rises when I think of some of the things doctors or occupational therapists or physiotherapists have said. It is usually based around the statements of “This is what you will be like from now on..” or “You can’t do (this or that) anymore…”, “You’ll never do (this or that) anymore….” No, I am not the “plucky” crip who decides she’s going to walk again, climb Mt. Baker, etc. It was me that said, “gee, I seem to be falling down several times EVERY day, maybe there is something I can do where I get around and not end up with so many bruises/hospital trips.”

But after the breast cancer 5K had finished, when I was lying in my bed, unable to move, on painkillers, I faced the wall and if I could have been shaking with rage, I would have been. If I could have smashed plates against that wall, I would have. “WHO ARE YOU? WHO ARE YOU?” I screamed inside, picturing those calm medical faces, “TO TELL ME WHAT I CAN AND CANNOT DO!” In this case, it was less about ego and more about people who, “for my own good”, placed seeds of insecurity, fear and doubt when they could have helped me; or at least had the decency to get out of my way. If medical professionals spend half the time helping dreams instead of crushing them…

The major difference between the training wheeling and the race day 5K is, in training, I am sensible, take a steady pace and rest 30-40 seconds every kilometer or so. When you are in a 5K and there are still over 4000 people behind you and still passing you; I simply don’t have enough common sense willpower to overcome the vanity. So you press on…and on. We went down a hill. I had to brake to stop running into people. “I’m going to pay for this later.” I told Linda. We got to the turn around point. There was a wheelchair porta-potty. They had placed it up behind a curb where there were no curb cuts. I asked Linda for a “hand up” (a move to get over curbs), she bodily lifted my chair over the curb (on adrenaline much Linda?). A bit lighter ala portapotty I started up the hill.

OMG! I have to look up to see the street lights at the top a half kilometer away.

It was long and steep and I cranked the music so all I could hear was the bass in my bones telling me when to push. Linda said later that the volunteers where saying all sorts of things, calling me “inspirational” or “heroic” or whatever. I told her I guess we are supposed to work for an equal world where half of them curse me and yell, “Get out of the way, ya freaking slowpoke!” – I’m always a bit unclear on why we shouldn’t want people to encourage us while we drag ourselves up a hill with six inches a push while everyone runs (or walks) on by. News Flash: This IS harder for me than it is for you (with the exception of the woman with arthritis and two canes – but even SHE passed me on the hill).

Twice during the 5K my body starting crying without me; it just does that tear leaking thing when I hit a certain pain level. But don’t worry, that doesn't stop me. I got to the hill top, gave a weak upraised fist of victory to a volunteer, wheeled the corner and as my front caster got caught in a big old pothole, I was flipped out of the chair.

Gee, I used to be proud of my legs. As of today, the atrophy on my legs has passed my knees now and is half way up my thighs. A visible wasting of the flesh, as the lower leg becomes uniformly even. Without calf muscles, without lower leg muscles to give definition it simply becomes a straight tube of flesh encasing a bone. In my case, functional muscle still, and sometimes weight bearing; but not enough to stop the atrophy from progressing up past the knee until now only the mighty quadriceps remain to fight for leg definition. The right leg is hanging tough; Linda says that Epee leg is still giving benefits. When I look, I feel frustration, regret but a deep sense of wrongness. It is one thing having a bit of a pot/belly because you don’t do enough sit-ups or stair-climbing; but legs actually changing shape, wasting away….grrrr. I’ve always wanted to be “top heavy” but I meant bigger boobs!

When the chair flipped me out, I hit and was out for a short time. Linda said she got to practice her first aid by yelling at people to stop crowding around. I think she put me in recovery position. A female doctor and nurse wearing green jackets were there calling 911 when I woke up. We convinced them that wasn’t a fun idea. And I told them in my “I am a very scary determined individual voice” that if they could get me back in the chair I would continue. They found some RCMP officers and I was back up, I re-hooked the oxygen and Linda held my head upright. Thirty second rest. I set MP3 player to “God is a Girl” and I told the nurse, “Catch me when you can” and I was off.

Being in a wheelchair on a rainy day, I was at an eye view with a lot of three and four year olds kids being pushed in covered three wheel jogger units by the modern “hot moms.” Kids find me fascinating. I tend to wave or simply say, “Race you!” (Hey, I know the child-like mind; I have a child-like mind). So for the long straight -this four year old with huge eyes and I raced (I think his mom helped). She told him, “Isn’t she strong.” Is there something inherently wrong that I was using racing a four year old as my motivation for the third kilometer?

Coming back to the university at 3.5K, I felt a familiar, whump, whump, whump. I had felt it in cars, but never on the chair. I stopped and checked. The left tire was flat, flat, FLAT. The nurse had caught up and was calling to see where a van could come to pick me up. People were passing me, and they weren’t even running. I thought about being pushed to the corner and getting picked up. I thought for about 30 seconds. “I’m going on.” I told Linda.

“You sure?”

“How hard can it be?” That’s a secret phrase Linda and I use for, “This is going to be incredibly difficult and painful.”

Jill, the nurse in the green jacket stayed with me the rest of the way. Thank you Jill.

The chair pulled so hard to the left that I just used the left hand to push and the right to brake, in order to keep the chair in line. I didn’t know that Linda was behind me the whole time with her hands just inches from the handles ready to grab hold if I lost control (see picture). She said later that I kept hitting the orange cones that separated the lanes. I don’t remember because wheeling isn’t like running. When you run a 10K, you can get to the point where you are running on habit; where you are running beyond what you can run and once you stop and walk, you simply won’t be able to run again. There is no instinct in pushing a wheelchair with a flat tire in the rain where a soaked glove has to try and find traction. If I did not concentrate every second on the single concept of PUSH, then a mental lapse of only 5 or 6 seconds would bring me to a halt.

At 4.5K a woman yelled (as encouragement) "It's all for the Cure!" (as Linda said later, "I had no idea what she was talking about, whatever reason we had started the race, where we were mentally at 4.5km had NOTHING to do with ‘the cure.’").

Oddly in all the 5000+ participants I was the only self propelling manual wheelchair. There was an electric wheelchair, I could see it in the distance, and I was gaining.

By the time we reached the finish line, it wasn’t there anymore. I kept asking, “Have we reached it? Can you see it?” We weren’t in the front pack or the second pack, or the seniors, or even the seniors walking a very old dog pack. We were in the “There’s still people coming in?” pack. Eventually Linda had to come around in front of me and say, “We’ve passed it” so that I would stop pushing. When I tell people I did the Breast Cancer 5K they ask, “What was your time?”

I reply, “Hell.” They are confused. I don’t know how else to explain it.

We collected our fruit and yogurt and cookies. I missed getting a “door prize” by one number; I was 4991 and 4990 won a prize. Grrrr. By the time we got in the ride home, I was slurring into non-understandable. One word Linda could understand: Marathon. The Victoria Marathon is next week. She was not amused. She put me to bed. The next day, when I woke up, the wheel to my wheelchair was gone.

No, she was getting it repaired.

“The best of days” I told Linda when I finished the race. She understood. It wasn’t about succeeding or overcoming or “plugging on.” It was something we had wanted to do together; reminded each other over the months to incite the other to exercise. It was cold and early but we were there. It rained and I got a flat but she was there and I was there and we were there together at the end. It was the best of days.