Thursday, August 30, 2007

My thyroid doctor is happy, which scares me.

Have you noticed that some doctor’s are “disaster chasers?” The worse things get for you, the happier they become. I saw the doctor regarding my thyroid this morning; because the blood tests had come back. These were the tests that had already been done by another specialist, but he wanted them completely redone in a different lab. I knew with the results back the only options were a) found something and more tests, b) found something and treatment, c) found nothing and more tests and d) found nothing and ‘see ya later.’

The doctor came in. He was happy. I should have known this was a bad sign. Last time my T4 was low (whatever that means), this test my T4 was normal BUT my (something something) was abnormal (to quote him: “Most people are ‘comfortable’ at 2.0, you are at 6.0”). He thinks this means that my autoimmune system is attacking my thyroid which causing it to change readings all the time. I must have had a “freaked out” look and I said, “Autoimmune attacking?” so he told a story to show me how 'common' this was.

He is treating a cyclist who races. The cyclists thyroid is all over too. The doctor put him on medication. The medication made him MUCH sicker and he begged and pleaded to go off it. The doctor took him off it. Then he was retested. His thyroid was off again so now he has been put back on medication. End of story.

THAT was his story to calm me down? Now I am even more freaked out. I don't know which is worse; what is going on now or being treated for what is going on now? The doctor tells me that the autoimmune will likely continue to attack my thyroid until it is destroyed. But that is why often the thyroid is removed.

Personally, in calming patients down I really think doctors shouldn’t use the words “Destroyed” and “removed” next to each other when talking about an organ.

“But...but...in the letter” I pleaded, “You said only half my thyroid had a goiter, can’t we save it.”

“Let’s not get ahead of ourselves.” He says closing off the subject.

He checks and yes, I still have a goiter. So what do we do now. More blood tests. But he already thinks my thyroid is in flux due to the autoimmune so how many more tests are we going to do? Best not to ask. But he agrees that when (if) he treats, I might get some more energy.

He reminds me that this will not fix my heart or neuro problems.

“But, if it is in flux, shouldn’t I get days when I feel really great?” I want to know, “I think I am being cheated.”

“It doesn’t work like that.”

Suck!


So in the end, doctor actually smiling because now there are two DIFFERENT abnormal results. Doctor using the phrase “patient pleading” and the words "attacked", “destroy” and “remove” in the meeting and now...more tests.

Damn it, I hate it when they give you hope.

Monday, August 27, 2007

Vagina In-depth plus coma guy makes his move.

Yesterday I had an extended conversation with a nice blonde female pharmacist about what exactly I was putting up my vagina and how far. This is all because I have a Urinary Tract Infection (UTI) which for those who haven’t had it is like having chili powder slowly ground into your urethra with a sharp stick while needing to pee all the time. UTI’s are God’s joke to women, just like prostate checks are God’s joke to men. Oh our God is a prankster God.

I had been prescribed Amoxicillin for the UTI and finished the dosing last Monday. Saturday night, guess who pops back up again? At first you try and convince yourself that it isn’t the dread UTI back again, that perhaps Linda accidentally kicked me repeatedly in the groin while I was sleeping, or I dropped a fork into my panties without noticing, and it was gouging my urethra. I checked; no fork. So I went to the emergency drop in Sunday morn where the urine test showed blood and protein and something else (when someone says I have blood in my urine I always miss the rest of the sentence). Since a certain percentage of women who get UTI’s are ones who have repeat performances (me), they make special targeted UTI drugs. I am on Ciprofloxacin. For UTI’s Amoxicillian is like hand grenades, Ciprofloxacin is like carpet bombing. Cipro has a few side effects though – like turning you into a vampire (sun intolerance) and yeast infections. So my doctor told me to pick up Canesten while I was getting my prescription filled. This is where the young blonde female pharmacist comes in.

She wasn’t sure if I should get a yeast infection kit unless I actually had the yeast infection. Then she found out I am already using an anti-fungal cream for this mysterious infection which has resulted in an abscess. So then the question is, How far in am I inserting the cream I am using, and which cream is it? Canesten has one of those LONG insertion applicators I call “Going up the Nile.” I wasn’t going that far back. She thought I was using in on my labia. She started going back in my files and bringing out all the other vaginal insertion products I had used on their medical record system. It was sort of a vaginal version of “This is your life” where I was like, “Oh yeah, I remember that one.” I told her the cream I was using, I put around the urethra too and inside where the abscess was. So then she said, sort of loud, “So you are inserting!”

And I said, “Well a little” and made this open hand gesture angling into my groin, “It’s not like I go up to the elbow or anything.” Anyway, she decided it was enough and if I felt all itchy and yeasty I could come back.

Five minutes later the guy who was in line behind me to talk to the pharmacist catches up with me and wants my phone number. I mean REALLY wants my phone number. He was here to get pain med, he’s in his 20’s and he had been in a coma after a truck accident but other than big old scars, he is fine now. Tells me, that the first thing he wanted to do after waking up from the coma was pee for himself. Or as he put it, “I wanted to hold my penis.” Help yourself dude. Not the most subtle chat up lines before asking for a phone number though. Come to think of it, this is the second guy who was in a coma who has come on really strong to me (Also the second one to start calling me “babe” after about 60 seconds). I must “the type” for coma guys. Either that or he overheard me and thinks that girls who talk about “full vaginal insertion” must be impressed by penis stories.

Oh God, I am getting this whole sexual fantasy role play, “This time you be the pharmacist” thing in my head now. Anyway, it was no go on the phone number so he begged me to give him his. Fine. After being turned down four times for getting my number, do you really think I am going to treasure yours? “Here you go, babe.” he says and hands it over.

You would think that a woman in a wheelchair holding a box for yeast infection treatment would put some guys off: guess not.

That's it; drug taken, sunlight avoided, UTI going away (bomb that sucker, nothing like the smell of scorched UTI in the morning).

Thanks to Tornwordo over at Sticky Crows for inspiring my to expose all after reading his post (aptly named) Anal Update.

Friday, August 24, 2007

Some squirrelly love and a lesbian video: welcome the weekend

Everyone around here is physically or mentally on vacation. I guess that just leaves me and all the bitter people (like my home care worker who said with spite; “I don’t get vacations, since I’m casual). I offered to do swapsy, she could have my disability for two weeks and I’d do the job. She just gave me the hairy eyeball and said, “I’m going to kitchen.” Guess there are some things you don’t joke about.

After two weeks of overcast, the sun shone yesterday so I suggest to Linda that we head to the park to feed the squirrels. Squirrels are the best type of friends (bought ones). It is pretty simple: if you have a peanut, you are the total focus of the squirrel (in a “gimme that!” way). When the peanut is eaten the squirrel comes back (“More! Now!”). It is the true casual sex sort of relationship (except we don’t actually have sex); when I want some attention, and the squirrel wants a peanut, we have tryst on the green. We both leave satisfied. There is a little music video (like 30 seconds or so) showing our squirrelly, squirrelly love (and one shot of when love goes wrong: one party gets a bit too demanding).

We went back through the ‘the village’ (“I’m the only Crip in the Village!”), where to my pleasure the woman came up and asked, “Did you end up renting House of 1000 Corpses?” (I was going through a zombie movie week). Usually people know Linda, so it was cool that I was the person who people recognized and wanted to talk to. (On a total side note, to the 30 people a week who come here on the google search “Zombie Sex” - this is the last time I am going to tell you: THERE ARE NO ZOMBIES. That’s just movie land, and really, do you WANT to have sex with a rotting body who only wants to eat your brain? On second thought, don’t answer that.)

Today I took Handydart, the local “Special” bus, which does door to door for wheelchairs. Handydart drivers are not actually Victoria Transit Bus drivers (though Victoria Transit for publicity pretends they are), they are subcontracted employees who are paid a significant percentage less per an hour than other bus drivers. Great message they are sending about disability huh? The experience isn’t very anonymous like taking the public bus since some guy spends five minutes strapping you in so after bonding you end up talking. On the way out, the guy next to me was in a power chair after he had a stroke at a red light. He would ask me a question and then say, “Don’t lose hope.” Which might have been sort of encouraging the first five or six times but after 40 straights minutes of “So this happens EVERY day?” (Pause) “Don’t lose hope.” It became a huge downer. Plus the driver would chip in every few minutes with “Doctor’s are idiots.” Though the driver really got a kick out me calling the MS society “The Mafia” and kept repeating it.

About “The Mafia”, I don’t have a MS bias (hey I might have it), it is just in this town, the MS society has more power than most government agencies. To give you an example, they a huge building which runs programs every day; If you have MS, you get free Physio in this town, if you don’t you pay $50 an hour. I couldn’t get the Island Health Authority to give me the time of day, I talked to ONE nurse at the MS building on the phone who said, “That’s not right” and within three days I had: home care, a case manager, an OT, wheelchair bars, a social worker and a health assessment. Tell me that doesn’t sound like getting the attention of someone “made.” (“Oh…you know Joey Luca? We gonna treat you right!”)

On the ride back I had “retro” driver who kept saying things like “Yeah, it’s not so bad driving for you handicapped folks.” He somehow managed to use the word “handicapped” at least 10 times in a 20 minute ride. So points down for that. But he swore....a lot. So points up for that. See, in Britian, people who swear are either drunk or have “lost it,” while in Canada people who swear are people who are passionately paying attention. So when a driver says, “Those fucking sons of bitches really need to redesign these shit-can wheelchair holders.” I feel he honestly cares about something to do with my well being. I also feel that he might have spent some summers working construction.

I had to return a DVD, and my bod was feeling pretty punk (in the almost crying level of pain punk). So I did what we all do: I listened to my MP3 player. So I was pumping the wheels to trance music AND crying in pain. You do what it takes.

I got up “the big hill” listening to Groove Trance’s song, The End. I even passed some pedestrians. The video is below, which has a lesbian robbers in love story which makes no sense to the song, but hey, lesbians! I was getting into the lyrics which Linda said she expected me to make my own music video about.
Only faith helps you, only grace can do
Only you can take the pain
Cause the end of peace is the end of life
and the end of any happiness

Just watch the vid and remember, “Don’t lose hope” Hahahahahaha!

Tuesday, August 21, 2007

Beth teaches a child a new word, and God punishes her

Watching the very large powerboat coming directly toward my little sailboat and then slumping over and closing my eyes was my first indication that something was wrong.

I forced myself upright and thought, “I really should care about this.” I was out on disability sailing; doing solo in a 16 foot martin sailboat, which went like all get out because the rudder was misaligned and jammed so veered toward rocks and ships at high speed as if it was trying to commit suicide. I turned the sailboat right, away from the powerboat, unzipped my oxygen bottle and turned the handle. It was a dud tank: there was absolutely no pressure in it at all. “This,” I thought to myself, “is bad.”

My little “episodes” go like this: I find trouble concentrating, I start falling over, I fall over, I am too fatigued to move, sometimes to speak, then after about 10 minutes on oxygen or 30 minutes without, I open my eyes again, and then 10 minutes later I can speak and I am weak for an hour or two. Why this happens, I don’t know. One doctor said it was a type of heart attack, but that doesn’t seem to explain everything. Maybe it is a type of seizure, who knows. All I know is it happens at least five times a week.

But it not something you want to have happen while you are out on a sailboat, not when you have no oxygen. Not when you still have a powerboat coming toward you. I let the sail boat drift. “Don’t panic” I thought to myself. So I tried breathing slowly and I took a picture of a duck. Time passed. By the time the zodiac safety boat got to me however, I was having problems staying upright much less holding the rudder. I didn’t have the strength to explain all that had happened but someone from the boat jumped on board and started bringing the sailboat (the guy below in the blue). I thought I could have “come close” but apparently ramming someone’s 42 foot yacht “near” where you want to go just isn’t close enough.

I told them not to call the ambulance, but of course as soon as you face-plant they call them anyway. The next 60-90 minutes are pretty wack, meaning I don’t remember much. I kept “falling into darkness” and people kept shaking me and telling me to open my eyes. I noticed that I couldn’t see out of my right eye and that everything had a blue overtone on it, so I kept mumbling “Blue.”

Before heading out on the sailboat I had been telling the staff some of my stories about doctors and the story about asking my GP for sleeping pills and being told to masturbate instead, and how EXACTLY to masturbate (because what you feel like at 3 am is hauling ass into bathroom to find scented candles and rose petals). At that point in the story this 11 year old boy sitting on the couch (which I had not noticed before) asked, “What does masturbation mean?” He was here for the disabled sailing as well. I answered by staring at him, then turning around and wheeling as fast as I could out of that room. I'm still praying his parents never get my name when he asks them the question that night.

I am not saying there is a direct retribution cause between telling stories about female masturbation in front of minors and having a “medical incident” later. Just, you know, I’ll use code language next time like “Pleasure myself” or “Taking an E ticket Ride.” We got to the dock. The EMT’s came and did stuff. I am guessing they got me out of the boat at some point. One of them whispered, “I’ve treated you before Elizabeth, I know you can move if you want to.” Which I thought later was an insulting “You big faker” weird whisper. In fact, due to the head nurse (who also thought it a insulting thing), I called the ambulence supervisor who did this "boy’s club"; you're the problem response, “Due to our experience, some of the people who call are just trying to get attention, that is just a fact.” Which translates in supervisor to, “Oh, did he insult you, guess you weren’t a faker, but I’m not going to do anything about it.” Indeed he told me in that same dead, ‘you are one of those people wasting services’ tone, that all citizens, regardless of their health or attitude are entitled to ambulance rides to the hospital if they request them. Dude, I’m paying big bucks every time you put in the back of that vehicle, doesn’t that mean I am sort of like....the customer? Anyway, the Ministry of Health (the overseers of Victoria Ambulance) were pretty appalled at the EMT treatment and the whole department attitude so maybe we will have some meetings to “bond” and discuss “corporate culture.” Or at least I hope they don't give me a “Frequent flier” nickname.

I don’t want to talk about the EMT guys and the hospital anymore except it took a lot of hours and the doctor came back with what all my doctors do “Something happened, but golly, gee-whiz, who knows what.” I had to do a “needle stick test” and the ER doctor sent in some super calm woman to do some bonding who had dealt with a needle phobic before. And in the end we did the test and she told me that she honestly didn’t think I would be able to do it (she the last needle phobic she had to chase as he ran screaming down the halls). Also my regular nurse, when she asked what I did and I said, “I write about disability for the BBC” got this terror look on her face and that was the last time I ever saw her. We all watched the stick test for blood sugar and it was low but within range. Big sigh as the head nurse said she had no idea what would happen if I was diabetic. Me either.

Anyway, it seems during the episode I wet myself since I lose most/all muscle control. One reader seems to have gotten confused with the mentioning of night of sex and then the urine in the last post so I want to clear something up: No, I did not participate in sexual “water sports." And I actually consider sitting in your own urine soaked jeans for five hours to be an unpleasant and NOT an erotic experience.

The disabled sailing association has not returned my calls, so I am guessing that is a bad sign. But, thanks to a paranoid recreation officer, I am the ONLY person in disabled sailing that specifically has a doctor’s note that it is okay for me to go sailing. But...still not answering my calls.

I am keeping on my hospital band on the basis that a) I have to go in to hospital for a minor surgery in a few weeks and b) if I have a few more “attacks” then I will get that really cool look that Gabriel had in the film Constantine (see all those medical bands on her wrist). Not only is “medical punk” the new trend (I keep telling people but they don’t believe), but maybe looking a bit like an androgynous psychopathic divine being will get me some more cred with the EMT’s. Don’t ya think?

So, I was pretty punked for the next two days after that, I finished my next BBC blog and took some pain pills and that was pretty much it.

Lessons learned:

1) Do not start talking explicitly about masturbation before checking if there are minors, particularly minors under the age of puberty in the room.

2) If you have already screwed yourself on rule 1, roll away before they get your full name

3) If you plan to take photos of seals, try not to get a boat where the rudder is jammed (the whole navigation thing)

4) Power Boats are rock, sailboats are scissors; try to remember that when deciding to take them head on.

5) EMT’s seem to find wheelchair confusing, since four of them couldn’t figure out how to detach my wheels, much to the amusement of the one EMT taking my medical history (You push in the hub and pull).

6) Hospitals should make you feel loved and that society cares about you; yet you leave feeling you are a rejected number in a vast uncaring system.

7) Don’t end your hospital visit with a cab drive home from a guy who served in the Isreali Military and who talks endlessly about the rules of engagement; like when to use a rocket propelled launcher into an apartment building versus a sniper (No, that’s really what he talked about).

8) Whatever those commercial show, you cannot pour a pint of fluid (say....urine) into a maxi pad and have it magically soaked up. Either that or I bought the wrong brand.

9) Telling people you were in the hospital is a sure fire way to get out of overdue fines on your video rentals (unless you rent at Blockbuster – in which case you’re screwed).

10) There is no ten, I'm just getting a bit OCD.

Later.

Sunday, August 19, 2007

I get cake, I get needles, I get to go to ER

Some say life is a rollercoaster. I think my rollercoaster is one of those with a giant drop followed by upside down corkscrews which makes you hurl.

Thursday morning I was super drugged up (40 mg of valium) preparing to get a whole bunch of blood tests done. I knew it was 30+. This was at a new lab and I was a little nervous (like biting the head off anyone who came near me for the last 24 hours nervous). Linda got me lying down on this huge furniture piece of wood with a cushioned top, and drawers all the way down and along. The lab tech/nurse came in. She knew I had needle phobia. I meanwhile was testing the bar screwed into the wall since the last time I had started pounding the wall and with the needle being inside me for so long, I thought I might have “issues”. In my tension I pushed the whole unit weighing a couple hundred pounds about six inches with my arm. I think that made the tech look at me different (like, “Call for the nets and tranquilizer gun” ala Wild Kingdom different).

Let’s cut it short and say it got done. How exactly I am not sure but she filled 14 vials of blood. Afterward, so high as a kite, I was not only slurring my words but when Linda tried to transfer me back to the wheelchair I was more intent on giving her hickeys. And in between that I was face planting into her breasts. I think the tech said something about a “big baby” but only until she realized that what was drawing me to hang all over Linda wasn’t a need for the maternal exactly (why does my libido go up so high when I am drugged?). Transferring someone while they try to give you a hickey on the neck is no easy feat.

At home, I slept, then went down to the video store where, like a person with absolutely no inhibition, I got ALL the DVD’s that looked interesting (literally 15 DVD’s). I only stopped because I ran out of money.

Then I went back to sleep.

That night, Linda and I got dressed and went out to celebrate 14 years together. Linda would not help me dress as I wanted (some comment about getting there before the restaurant closed) so I did a “goth lite” with the bare essentials. At the Italian restaurant there was a wedding party in another room who was serenaded by a staff member. I asked if they did anniversaries. Next thing you know there is this lush Italian-Canadian mezzo soprano singing an operatic German love song to us with great presentation (“years in musical theatre” she told us later). Canada has it’s issues, defaults, hang-ups, deficiencies and problems but hey, where else do you get opera and a free cake when you tell the staff you are celebrating your same sex anniversary instead of the manager telling you “No touching, this is a family restaurant.”

I’m not going to say what went on when we got home except to say that it put me in the hospital. Well, maybe that was a coincidence. Let’s say that night was a bright light in a VERY bleak week. And that by the next afternoon I would be “rescued”, I would wake up in a strange hospital and be admitted to ER. Bad news: I urinated myself and was left in my wet jeans for the entire time. Good news: The EMT crew didn’t want their blankets back.

I’ll try to tell you about that adventure tomorrow. I just wanted to let you know that I am still around, not kicking exactly, but complaining enough to be a pain in the tuckus.

One preview, I told the head nurse that I had been getting some crap from a couple EMT guys (like whispering insults in my ear when I couldn’t move or speak). She asked some details. She wanted to know everything blow by blow. I told her about my being unable to speak but they put a pen and paper in my hand. Surrounded by four (was it six) EMT guys dragging me off yet again to who knows where (since I was barely conscious). One nice ER guy kept asking me, “What is the problem? What is your number one compliant?” I slowly drew on the page. E.....M.....T......S.

The head nurse covered her face and had to leave my curtained area she was laughing so hard. “They would not like that.” She told me.

Wow...I am almost feeling bad....wait.....nope...sorry. The feeling went away.

Wednesday, August 15, 2007

That's it, I'm outta here!

I am abdicating my life (for a while); if you want it, it’s yours. Just pick up the keys at reception. Having the nightmares every night I can almost handle. As well as the medical system in which there is a distinct feeling that the doctors are playing Foosball and you are the ball.

On Monday I had an interview with a “recreational Physiotherapist.” I think the theory is that she is supposed to help me do things. Dunno. What it turned out to be was a sort of “justify your life” evaluation.

Her: “How many people do you see socially other than your partner in a week.”

Me: “Zero”

Her: “What steps have you taken to change this situation?”

Me: “Well, I volunteered to do free work, but that was turned down. I would go to a church but the churches around here don’t really want us.”

Her: “Surely that’s not true.”

Me: “We’re a lesbian couple....” She stares at me blankly. “The nearest church is Baptist......” She stares at me blankly. “We tried the church down the road and felt lucky to get out while we could.”

Her: “That can’t be true.”

Me: “Your probably right, who’s ever heard of Christians who had problems with gay marriages?”

Her: “What do you do each day to maintain your cognitive ability?”

Me: “Wha?”

Her: “What do you do each day to maintain your cognitive ability?”

Me: “Read? I do that. I have conversations...with myself. I do puzzles.”

Her: “Do you still have initiative?”

Me: “Initiative?”

Her: “The ability to think up and start new projects or ideas.”

Me: “Yes, I know the word. I HAVE ideas, it is just that with the getting up, and the getting dressed and the medical stuff, it takes a few weeks before I can do them.

Her: “Can you give some examples of initiative?”

Me: “Oh my God!”

At the end she told that she was going away on vacation so nothing would be done until the end of September. So, I am sure after six weeks, things will just get jumping. Probably in the same way I have been waiting for “Recreation and Integration” to get me a “buddy” to swim with since April.

Then yesterday I had not so great devotee guy become the stalker guy when a) He followed me in his car then pulled in and blocked curb cut; b) he told me he had been leaving sign/signs with messages for me on telephone poles along routes he knew I traveled c) He asked me at least 5 times for my phone number and wanted to come to my place and d) When I told him I really, really had to leave, he took a picture of me with his cell phone. I called the police who told me that because I never said; “I do not ever want to speak to you again” that I was “encouraging his behavior.” Oh, and that it isn't illegal to take pictures of someone who doesn't want you to (hey, now I'm a celeb!). Okay, YOU get in the wheelchair, YOU have the guy standing a couple inches away from your chair looming over you and then YOU tell the guy who sat at home thinking about you, made a sign on the chance you MIGHT see it and then put it on a telephone pole where he just HAPPENS to remember you wheel by (because he doesn’t watch at all) something that he obviously doesn’t want to hear: that you don’t ever want him to speak to you again. Because these guys don’t go away you know, they just, if they leave you alone, glare at you with this weird “I’m going to get you one day” stare. I know because last years creepo, ‘Dan the man’ is back outside the video store I go. That makes for a real pleasant trip.

Anyway, when I’m not “encouraging” these guys, I am looking forward to tomorrow morning, when I have to do the largest number of blood tests ever. Last time I did 14 or 18 I think. This one is 28-32 tests, so that needle is going to be in me for a long, long time. And I can’t have it done with the people who know how to deal with my needle phobia, because the doctors want to make sure the abnormal results ARE abnormal but doing the tests all over but somewhere else. This lab says on one hand, “We can accommodate you with your extreme phobia” and on the other hand says “You will have to take a number and wait in line when you come. You know, because that’s what people with extreme phobia’s like to do: “Hi, I’m here to be completely covered with spiders from head to toe....oh you want me to sit and wait and think about how awful it is going to be so that I am four times as freaked out when you finally get to me. Sounds great!”

Plus the “social worker” called today who is in charge of something, but I can’t figure out what since everything I asked she said, “I can’t speak to that.” Like; “Why do I have to wait six weeks to find out if I am going to be in any rec programs?” Answer: “I can’t speak to that.” Q: “What about guys who are taking photos of me, any experience with that?” A: “I can’t speak to that.” Q: “The disability resource centre says the staff is ‘on vacation’, who else am I supposed to contact?” A: “I can’t speak to that.”

Wow, if there is ever another phrase I never want to hear again it is “I can’t speak to that.”

So that’s it. I don’t really have much of a plan except some options:

1) Get drunk and wheel off to mountains to live as wheelchair hobo.
2) Get drunk and check into a hotel with my hoard of cash and drink everything in the mini-bar
3) Get drunk and get arrested.
4) Chain myself to a bus for revenge.
5) Other ideas yet to be thought up.

Other than that I have been watching kitty videos. Mostly this white cat who defines “scaredie cat” – she patheticly waves her paw at the camera in vain attempts to scare it off. This action would be more convincing if she wasn’t backing away at the same time. Know how you feel, kitty. Rowr!

Monday, August 13, 2007

The RCMP have set a challenge; drunk wheelchair driving

Just to let you know, I have done my second and my third post for the BBC for Ouch! Please drop by and give a “pity” comment like a smiley face. I do appreciate every comment. Also when I asked the BBC about site counters they went, “Huh? Site whatsits?” So if you comment then I can tell people, “I’m big in Kent you know....and parts of Holland.”

I went out to drink with Linda this weekend and we ran into four police officers. I asked them what the policy was on drinking and driving wheelchairs. After all, they have arrested cyclists for riding drunk. They wanted to know if it was going to be an electric or manual. I gestured to the manual I was sitting on; manual! There was some thought that electric wheelchair drunk driving in the road might be an offence but they thought that manual wheelchairs should be okay (as long as you don’t draw attention to yourself). Well, that little provisio is probably going to get me in real trouble (me draw attention to myself? Since I have a habit of a little breast flashing when sober, who knows why might happen in this wheelchair when drunk). The officers wanted to know if I was going to try to get “hammered.” No, but since 1 pint of beer makes me “very relaxed” (I often start trying to give Linda hickeys too), who knows what 2 pints could do? I asked if they had ever arrested someone in a wheelchair for drunk and disorderly. Not yet they told me. Hmmmm, that sounded a bit like a challenge, didn’t it?

Friday, August 10, 2007

A henna tattoo and musing on starting sex work

Last weekend, sunny day, Linda and I got my father to drop us off at the local fair. Having the attention span of an 11 year old I decided that I would simply DIE if I didn’t get a henna tattoo. So before you could say, go bo-peep go, I was inside the henna tent getting my tat painted on.

So while the girl, K., is painting on the henna we have a talk which may have started with weather but soon drifted to creepy guys and sex work (as these idle conversations often do). I had been getting a lot of emails recently from devotees since I did that piece on them for a disability carnival. Apparently doing a long post saying; “Hey, I’m finding this wheelchair thing kinda emotional, please stay the hell away from me” is translated in Devotee speak to “Hey, why don’t you email me; I’m just playing hard to get for those other guys because I’m really waiting for YOU.”

K. is pretty interested in the idea of sex work where you just have to take your socks on and off to make money. She tells me about a webpage (which I forgot to write down – curses!) which lists all the ways to make money on the internet in sex work which doesn’t involve sex or getting naked. She says she remembers that standing in high heels shoes on a guy’s dick is really in demand. I am thinking “Well, standing in high heels is no problem but the supply of guys who are willing to be stood on might be a bit harder.” But K. and I amuse ourselves with the thought that no matter how bad things gets, there are always odd ways to make money off (strange) men.

Anyway, with my dad driving home I tell this tid-bit about high heels to Linda when my father says emphatically, “No thank you.” I’m puzzled. “Uh dad, I don’t think this opportunity is open to you.....” I know my dad is looking ahead for things to do post retirement but this is more a chick enterprise. Wrong thing to say. Apparently my dad is NOT COOL with his daughter talking about work in the sex trade while he is driving. Even when the work, as I pointed out, would be with my clothes ON.

I tried to find this magic web site later: no luck. But I did find a recent book called, Naked on the Internet: Hookups, Downloads and Cashing in on Internet Sexploitation. The author Audacia Ray (background interview here), works for the Museum of Sex and is a famous sex blogger in her own right interviewed over 80 women on how they interact sexually with the internet. One of the major changes she notes is that women dip in and out of things like modeling, kink wear and don’t consider themselves sex workers (since you only do it twice a year to get money for a new tattoo). Audacia is interviewed by Violet Blue, fetish model and sex author for SFGate about the book. Audacia’s response to the question about going to a local cupcake store seems the perfect tongue in cheek rejoiner, “Only if you let me rub frosting on your boobs.” Darn it, what a great line that would have been to use when I did that on-air radio interview at Women’s Power Hour for Zed. On second thought, they didn’t look like the cupcake or frosting crowd.

While Audacia does bring up fetish opportunities like Nose Bondage she does warn that getting outted from sex blogging or sex work is VERY HIGH. Have no fear, I am not exactly the type of person to skulk away; any sex work I do will be blogged about right here first (once this blog becomes pay-per-view). Seriously, am I thinking about sex work? Well, when you have a Ph.D. and absolutely no one will employ you in any sort of work because you a) are sick and can only work short stretches and b) mostly need to work from home; then you start to feel like no one wants you. Only, ta da, suddenly you are getting contacted DAILY by people who pay big money for wheelchair videos and pics (one site which uses all body form female models charges about $150 a download for videos of stuff like doing your nails and dragging your ass from one transfer point to another). So on the one hand; societal rejection. On the other hand; more money in a week than I have made my entire writing career. That dichotomy is playing with my head.

I put the situation and question up on a forum: Should I enter erotic work? Responses so far are 1 yes (though they don’t know why) and the rest all “No.” Most are “no” because “not only is it a sin but you will be helping others to sin” – okay, because God was fine with me encouraging women to masturbate but now God is angry because I am thinking of painting my toes on camera? The other responses were: “Maybe you will meet someone nice this way.” My response to that: EEEEEEEWWWWWWWW! This is not a "Gee, I'm lonely" thing. Yeah, that’s why Pretty Woman is really a recruitment video for prostitution. Want to meet some nice guys? Want to have an all expense paid shopping spree? Go into the sex trade.

Anyway, more about this later since Linda is telling me her opinion of the debate tonight.

Monday, August 06, 2007

Guest Blogger Linda on "The 'almost accessible' vacation.

Linda, my partner, wrote this post about her viewpoint on holiday trips and accessibility:

We were in desperate need of a vacation. It had been a rough four months watching my partner’s health deteriorate. We were at the point where her weakness, pain, tiredness, the use of oxygen and a wheelchair was the new norm. We needed a change of scene, away from the daily doctor’s appointments, if only for a few days. But where to go? We found an ad in the paper for a spa and lodge up-island that was offering an early bird/off season rate with lots of free extras. Those deals are my kind of vacation. I started planning the trip.

I thought it was an ideal vacation spot – no need to hassle with extra health insurance had we gone to the US and no need to get approval from an airline to take oxygen onboard. The freebies really attracted me – a zodiac ride to see sea lions and eagles, free kayak rentals and a foot soak at the spa. I love sealife and had toyed with the idea of kayaking for over a year.

What I soon realized was that this vacation would be unlike others as I needed to shoulder more responsibility. Previously we always planned things together and we each had tasks to do to make the vacation a reality. As Beth’s deterioration was so new, we were still trying to find limits on what she could manage without paying for it for days after. At the time, it didn’t seem like there was much she was able to do. So it fell on me to do all the packing, making sure we had all the necessary medical equipment such as oxygen and medication.

I needed to rent a car that would hold the wheelchair. I thought a full-size car would do it. The chair didn’t quite fit as is, so I had to take off the wheels and reassemble the chair every time Beth got in and out of the car. Plus we were still waiting for her lightweight chair and using an older heavier “loaner” wheelchair. Maybe next time I’ll get a van! I also needed to load and unload the baggage from the car and do all the driving. Even though Beth has a driver’s license, the sensation in her feet was fading and her sudden passing out due to lack of oxygen was increasing. Not what you want to happen while driving a vehicle at 100km/hour. In the past, packing and driving were shared responsibilities. Things were different now – more complicated – we needed more rest breaks for us to stretch and they had to have accessible toilets. On the way up, Beth was inspired to ask me to turn into a small regional airport. She hoped it had an accessible toilet and it not only had an empty and accessible toilet but a disabled parking spot 15 feet from the door. Who would have thought to go to the airport for a toilet?

We arrived at the lodge in good time. When planning our trip I had called the lodge to see if they were wheelchair accessible. There is no disability act in Canada and many restaurants and hotels in Canada are not accessible. I found this out a few weeks previously when I had to call about 15 restaurants before I found one where we could actually eat. When I called the lodge I was told that it was ‘almost’ accessible – there were a couple of steps to the spa and a couple more to the dock. I thought Beth and I could manage that…somehow (although I confess I don’t remember asking her as I was in love with idea of that zodiac ride and I didn’t want to be dissuaded).

‘Almost’ was the word that would haunt us all weekend. The architects of the complex must have thought steps created character because there were steps everywhere. Even our ‘accessible’ room had 5 steps down once entering the front door. Fortunately we switched for an empty room which had an pathway accessible back deck with a ramp. Inside this new room we found wheelchair bars in the wheelchair sized bathroom. An odd surprise as when I called to book I was told there were no “designated” wheelchair rooms.

The restaurant was 3 steps down from the main lobby, the pool area was 2 artistically curved steps up from the path (It was the stupid curves which stopped us from being able to easily use a wheelie to get up them). The spa was a boat ride away. To reach the boat there were approximately 20 stairs or a very steep hill which couldn’t be navigated alone. Then the floating dock itself was at a 25-45 degree angle depending on the tide. Somehow we never got to use it at high tide. We had to do a transfer from the chair onto the edge of the boat, from the boat edge back into the wheelchair (on the boat back deck) and from the wheelchair down the step into the secure seats of the boat then all over again on the other side of the bay. Oh, and that spa… it was located past one hill, 30 feet of soft gravel, and then five curvy steps and wicker mats to navigate. ‘Almost’ accessible?!

The staff was nice in the vague way which doesn’t offer any solutions. If we wanted to partake in the activities we had to find our own solutions. And we did. I was determined to go to the spa, the restaurant and that zodiac ride to see the sea lions basking on the rocks. Beth sure paid for it – needing oxygen after each boat transfer, suffering a few spills wheeling over rough terrain and the resulting trauma to her body which caused pain and tiredness. I paid too, as I needed to pick up the pieces. I had a sore back from helping with the awkward transfers (still hadn’t figured out how best to transfer), I had to drive into town for take out dinners that we could eat in our room while resting in bed. And then there was the worry and the guilt – would we have enough oxygen to last the trip? We had been using more than usual. Where was the nearest hospital? Was it my fault she was so exhausted because I dragged her to do the able-bodied activities?

I quickly learned that even on an “all inclusive vacation,” I was the only person who would step in and ensure Beth’s health or comfort. For example, in taking the wilderness zodiac ride we found that zipping around at 50mph is really great (and I do have some good memories of the eagles and sea lions) but it is also very tiring for someone who has to struggle to stay upright. By the time we arrived back at the dock Beth couldn’t move and had trouble breathing. Carried off the boat she went into shock and her body started trembling uncontrollably.

After a few moments I realized that while there were four staff workers standing around the dock, none of them really knew what to do. While I was holding onto Beth’s hand and talking to her, I also had to make ‘suggestions’ to the staff to help stabilize Beth. Twenty minutes later, when the shaking had stopped, we transferred her to the chair. The staff helped me push the chair up the dock ramp but then they decided their job was over. It was left to me to get her up the intensely steep hill, around the pathways, into the room, and transferred to the bed all by myself. This might have been when I strained my back. Luckily, I was always too busy managing the staff and reading Beth’s body to feel worried or alone.

Our worst part of the trip was the solo kayak excursion. Beth was not allowed to go on the kayak, but she still encouraged me to go on my own. She was told she could go to the library and surf the net while I was gone. Unknown to me, when Beth arrived at the library, she encountered a dozen stairs. A member of staff moved her wheelchair to the upper level while Beth crawled up the stairs to reach the computer. The staff member then disappeared. Meanwhile, I was a solitary 30-minute paddle away from shore when the weather turned. The wind picked up, the clouds grew stormy and thunder rolled in the distance. ‘Surely the staff would bring a powerboat and get me off the water before lightening strikes’, I thought. But they didn’t. ‘Beth will see the stormy weather and alert their attention,’ I hoped. But still no one came. I was on my own and Beth wouldn’t be able to get me out of my physical problem – which she often did in the past when she was able-bodied. I really had to battle waves, wind and fear in order to make it back to shore. I finally made it only to find the staff hadn’t even noticed I had arrived.

When I found Beth in the library I broke down as I recounted my experience. It made me feel better so say how scared I was. Unfortunately, it made her feel helpless that she wasn’t there for me. While I was trapped on the water, she had been trapped in the library. Until someone came there was no way for her to get herself and her wheelchair down the stairs. We were both fed up with having to fight every step of the way in order to have a ‘normal’ vacation. We just wanted to get back to our room and crawl under the covers and lick our wounds. But of course, nothing is ever simple when you have a disability. We were beaten down and we still had 30 minutes of grueling work ahead of us. Before we could reach our room we had to go down one dock, transfer onto the boat, traverse the bay, transfer off the boat, go up a very steep dock, up the steep pathway, through the parking lot and around the building to our deck.

A long nap will do wonders for the body and soul. Once we woke up we decided we would do what we could to salvage our vacation. One thing was to stop doing stuff that would wear us out. No more boat trips, that’s for sure. A dip in the hot tub we could manage. As well as watching movies in our room.

From this vacation we learned ‘almost accessible’ isn’t quite good enough. Not if we want a vacation both of us can enjoy. For our next road trip we bought a book that outlined all the accessible restaurants, toilets, parks and sights in the area we were visiting. I found that it is possible to go on a vacation when you have a disability or are traveling with someone who does. I also found out that Beth’s limitations were not the only consideration in holiday planning; my limitations and needs were just as important. And those limitations and needs had changed along with Beth’s health. So yes, it takes extra planning and things aren’t quite as spur of the moment as they used to be. Sometimes it feels more like planning a military exercise than a vacation. I now realize that a vacation is doable but not always what I might hope it to be. The two of us can still have great adventures together.

Friday, August 03, 2007

Female Wheelchair Boxing: Girl Fight Bout

Female wheelchair boxing isn’t a common thing...yet. Because I couldn’t find any examples on the internet I ended up making my own wheelchair boxing video after S. from my class/club agreed to be filmed. She is the best boxer in the class, has been boxing over a year and has really good form. She is also very fast. I have reach on her but she has movement and speed. This bout, because I couldn’t get power into my cross (with no power coming from the legs), I decided to use both hands as jab hands, though since I am left handed I use the right hand to jab more. We are not putting weight into the punches but since we both are moving we get some stinging, some bruising and I chewed funny for a day after getting hit hard on the jaw (I drop my jaw when I fight – bad habit). Both of us are smiling as we try to figure out strategy or in my case just think “Get her, get her, get her!”

Since trying to adapt boxing for a wheelchair is a work in progress, any tips are always appreciated. However you feel about boxing, I think this three minute bout is not exactly the “beat them till they drop” style of boxing. It should be obvious that we are both enjoying ourselves. It is only later that you go, “Gee, my nose really hurts.” And then check along your teeth for blood. This was filmed Monday and edited this week. Music is Teenager from My Chemical Romance.