Thursday, July 31, 2008

Simple pleasures, postcards from Japan, mud slushing and Hoh

Okay, yes I know I talked about rest and resting but instead (typical me) I am going off on another adventure which I hope will NOT end with me going to the hospital. See, tomorrow was SUPPOSED to be my, “I will go to the Hoh Rainforest Trip!” because the last attempt failed only because of the effect of the Coho (I am not strong enough to compensate for the movement of the ship for 90 minutes so start having problems breathing, etc), I need an evening to recover (so I going tonight and then lying there making vague moaning/vomit noises - actually viewed as less odd when I do it in Port Angeles than in Victoria, so I must not be the only one lying down making those noises over there). Then tomorrow I go to the Hoh Rainforest and recover again, and Saturday I come back and recover from the Coho Ferry after I come back. Admittedly two days and nights for 2 hours in a rain forest but hey, I said I was going and it would HAPPEN, I didn’t say it was going to be easy.

Only…..it is raining. I mean it IS called a rain forest, it is just that it has been sunny for weeks and weeks and now, when I actually WANT it to be sunny, it is raining. Oh Fudge! So I will need to plan the whole, “I will go to the Hoh Rainforest!” AGAIN, because we still have like a bunch of summer (many, “soon” of summer) and I need two or three weeks of sun to dry off the forest. Because while Able Bodied people can walk around that giant mudhole that appears after rain in the middle of the trail in a rainforest, wheelchairs have to go THROUGH. Which means if I go, I would do a LOT more pushing (mud is more resistance than dirt), and look like a mud monster within .5 km. So what we are doing is unknown. But not the Hoh. But I am still going (drinking margarita’s is high on my list right now).

But I wanted to let you know that I am, and have put my plan of doing the simple pleasing things in action and am back on the postcard project, and these are some of the postcards I prepared over the last day or two. Just a selection of what is going out. The ones with the pinked haired anime girl are from Aria, an anime/manga series about Neo-Venice (The New Venice) which is built on the terraformed Mars and the girls are the only ones who row the gondolas. Cute coming of age story of our heroine who dreams of being a professional gondola rower and the people she meets.

I have taken all of the postcards to stage three now. Stage one is matching postcard to person (I actually end up with several cards laid out reading up on the person to trying and decide the right one). Stage two is getting the address label and return address on. Stage three is wood block or rubber stamping. Stage four is all other stickers. Stage five is writing and then off it goes. Here is an example of two of the cards as they wait to dry, as Japanese cards have a bit of slick veneer on them which requires drying time.

When I send cards to parents I try to select cards and wood blocks and stickers which will make their children envious of them (Parents are rarely the envy of being ‘cool’). I also, if you email me at mpshiel at hotmail.com will send your child a postcard. I usually send baby animal ones, or simple anime ones – everything super G-rated. I remember as a child/youth/teen how that I NEVER seemed to get any mail, so I try to make sure all the youths/teens or children on my lists get cards regularly because a cool postcard from someone you don’t know is STILL better than no postcard at all, right? So if you want me to send a postcard to your children, just let me know. As I said, the information is kept for postcard use only. Only Linda and I have access and it is not kept on-line but off-line. Also, any readers (not to point fingers but SHEA) who I don’t seem to have addresses for, I would really like to be able to send you a postcard. If in this modern world the idea that someone would send time and money to make sure you got a postcard seems odd then just remember that I have some brain damage (if that is what it takes to explain it).

I got to try out some new wood blocks today and I am very pleased with them - Look at the totem pole and the baskets - cool! Simple pleasures, right? Hopefully the people who get them will like them too. This post is also so that those who haven’t got their card recently know that I am hard at work at the Postcard mine, toiling to dig the cards out of the earth, and bring them to the light of day (that means my 120+ postcards from Japan have ARRIVED!).

Anyway, I am off to the post office with today's batch, I hope you have a good day and I will update you tomorrow on what I did INSTEAD of slushing around with my wheelchair in the MUD.

Wednesday, July 30, 2008

The pink fluffy? Some Hello Kitty, some pre-grand Mal, another day.

I couldn’t make up this. You all saw and gave an opinion on the pink headband: it just wasn’t me. On the same day, I am given a present, by a third party. And a card. It is from my mother (she doesn't read the blog); she writes to tell me she is praying for me (Geez mom, you live four blocks away! Anything OTHER than prayer enter your mind? Oh well, like I said, it is often the Christian Code Phrase for “I’m running away as fast as I can.” She’s also praying for me in general.)

She sent me a present. I start to unwrap it and this is what I see….
No. No! Seriously, this is some sort of sick cosmic irony! I mean I know parents are bad at gifts when you are a teen usually but……

I unwrap the rest and find, THANK GOD! It is NOT that pink poofy head band, no, it is pink, poofy, fu-fu, over the top Hello Kitty Bling pack for little girls. Two glitter nail polish, three glitter lip gloss, I have no idea what some of these items are and an over the top case to keep about half of them and your pink feathery top with the faux pink pearls to carry them.

Sigh. So the part where I am sort of getting into Hello Kitty since I have a Hello Kitty Vibrator and some Hello Kitty Goth Lolita stuff has sunk in; but not that I like the subversive stuff. This is the stuff that made me HATE hello kitty, until I started finding Hello Kitty punk stationary and the like. I mean, one of the stickers I send out is Hello Kitty as a Vegas Girl with headdress! I almost feel bad, my mother probably had to knock over a few children to buy this. Where DID she buy it? Actually, not thinking about that. This will make a great present for a girl or femme boy, niece, nephew, daughter son, please drop me a line. While I sort of appreciate the thought, it means that a) I need to take over my Hello Kitty stuff with skulls and anarchy symbols to my mom and show her difference between that and faux pearls and b) she wanted to give this to some innocent girl, it is just that isn’t me. And while I am not going to play pretend anymore it doesn't mean that there aren’t innocent girls or boys out there who would love this for sleepover or dress up. So email me?

Other than that I have arrived to the end of Day 18, I am a road kill. Tomorrow I get an assisted shower and then will be in bed. Seriously. Today I slept and slept. I have nightmares but still sleep. Yesterday, the same woman who told me to get an 18 inch wide chair because I could do the “woman squish” against the hip/clothing guards; who gave me a 17 inch indoor chair months ago is ordering me a 16 inch wide electric chair. So don’t worry, I’m not half the person I used to be, just sort of 5/6ths.

Anyway, Linda took this Sunday morning as my limbs were started to spasm, video
this led to a partial and then to a grand mal where I managed to smash part of my shoulder. It is rather weird, you wake up, exhausted, you sleep and find all sorts of bruises on yourself, and muscles torn.

Today, I posted two postcards. I prepared four surprises. I put addresses on seven more postcards. I cannot come to the phone, I cannot come to the doctor’s office, sorry, I am previously engaged.

In an aside, with all the oxygen I am on, I wish they would offer flavors, you know an hour long tank of cinnamon, or baked apple. I am getting ‘oxygen lines’ like I used to get dents in my nose from my glasses.

Oh, Beacon cancelled my scheduled overnighter an hour before 10:00 pm. Ack. A plague of locust in their underwear!

On Dying and Living, and 18 days.

The last few days I have been trying to focus on posts where I don’t always look passed out, or in pain, or feeble, because while that is part of my world, perhaps a majority, it isn’t all I see and do. And Luminara, as well as going to the Moss Street market and talking in Japanese to Yoko (she is from the prefecture just above Tokyo – here we are talking Punikura poses!) are other aspects to my life. Admittedly I only have these public parts because I have a partner and lover, and a very good friend (not yet lover!), who support me medically and physically to make it possible for me to have those experiences.

I even still have enough humor, on some days to make a “Oh sir, pity a poor, poor crip like me!” face; or is that my winsome face? Or the puppy dog one? I sometimes get them mixed up?

At the moss street market Linda was trying to convince me that the pink fu-fu headband with fluffy pink fuzzy was actually “ME” and would make a great addition to my skull headbands. For some reason, probably because Linda is such a bad liar, I was not convinced. What do you think, is the pink fuzzy that screams, “I want to be a ballerina!” really ME?

We dropped by the bank Saturday and I asked Linda to take a picture of us posed by this old Dodge (1930’s?) as a typical “Victoria experience”. Victoria is a haven for old cars and collectors as you get a $25 “collectors” driving plate and with the seniors, there are lots of 40’s and 50’s cars tucked away in garages until the next generation finds them (same with those silver Gulfstream trailers).

The reason I have been doing posts like that is because the last few days/weeks have been full of conflict with Beacon, and doctor’s orders. To leave a weekend of going out and then go back into micromanaging new caregivers, and spending most of your day's energy getting more tests, and again, more tests is emotionally hard.

Now that I have had a seizure in front of the doctor, he cancelled the anti-seizure med he was prescribing THAT DAY, because now with these additional tests he may find a better medication. But until then, he would be delighted if I could have seizures in front of everyone, and record how many I have this week, be put in an observation unit. While now, after 17 straight days of tests, meeting and activities, and going into another two appointments tomorrow, I AM having a seizure or more a day.

But the pain of always more, the finality of where it is giong, the overwhelming stack severe “ideopathic” things like auto-immune diseases and so much that pulls emotionally and literally at me is too much. Having to explain in detail, how each system is failing, three times a day as Beacon has pulled all my regulars and now I have to explain to each new worker, explain how they could fail while they are there is a hammer of my mortality, my own fragility. To then have to listen to then give yet more advice like going to a herbalist who did wonders. Or "Have you seen a neurologist?" (One of Yesterdays' workers) Or explain that no, this isn’t a condition they just found, it was observed in 1900, it is just nothing so far works. But two treatments HAVE been tried with limited success (in the US). But that I, like the disease Alzheimer’s (in Canada ) can’t be officially diagnosed until after death.

If you want to die, stop reading now. Because I don't. I may have thought I did, until I faced having mini stroke after stroke until my mind was swiss cheese and though function after function is lost (today, I tried to eat and choked instead), the body drags on, like a beast toward Bethlehem. T.S. Eliot was actually a bit of an optimist; because death and the end do not always come quickly, and so it is not a whimper, but a prolonged moan, with sobs and whimpers.

I do not want to die and inside of me there is a child screaming, “unfair, unfair, unfair!” No matter how horrid a person is, do they deserve this? Linda or Cheryl or both have used the ambi-bag this week. It is a bit waking up to being hit in the stomach. Turns out the ambi-bag, which breaths for you does not care if your gut or lungs get the air. So you tend to tense and resist as a first sign of coming to awareness, of self breathing.

Today was a seating clinic for an electric wheelchair; an indoor chair (which I can take outside) with head rest and tilt for seizures. They built it so that I cannot flip out while in a seizure, as I did in the doctor’s office (and still have nightmares about). When I protested, Janet, the blunt speaking but probably more effectively caring person over this last year, said, “Does that mean you will want to be wearing a helmet then?” She is the first person who does not want to observe, she wants to solve.

Janet is the eternal optimist, except on Friday when she saw me again for the first time in several months. I had lost more weight, and we explained the medical situation. She had to turn away while she said, “And you were the person who came to me a little over a year ago because you were falling down.” But then, between then and today, she sucked it in and came back with getting a chair for me that would enable me to keep writing, to use the computer, to get to the bed and bathroom AND to go outside and use it with my limited hand function, and when that fails, she is ready for that too.

I did not know until today how little feeling or control I have in my hands. I ended up having to roll my left thumb (strong hand) sideways over the on switch to stop double to triple pressing or over-pressing and turning the chair on then immediately off. I could use the thumb and join of the index to drive forward but had to learn how to use my shoulder to back up.

The chair will be rigged so that it has an indoor headrest and an outdoor one. It will be rigged so that I will have not only head support but as things progress, I will be able to maneuver the chair without a sip and puff or a cheek joystick but with micro head movements. That however could provide an interesting demolition wheelchair if I have that feature turned on AND then have a seizure.

I’ve learned a lot in my 17 months as a manual chair user. I’ve done a lot and I hope I still can do more. Janet is moving my Wheelchair report to the top of her list, and will be hounding Blue Cross for me. She says she WILL get approval from Blue Cross in three weeks from today, maybe two; and for me, a person who has had a chair less than two years ago (they don't approve chairs except every five years). I don’t know what she sees, but she seems sure of it and if she can get that approval in 1/3 of the time, that means only extra six weeks until the custom order is delivered (two months optimally). The way she talks, it will be a bit of a race between my ability to transfer being lost and if the electric arrives in time.

That seating clinic took three hours and I had a seizure. In typical fashion she and Randy (wheelchair guy) conspired to convince me that I had somehow agreed to order the chair in Barbie Pink while I was unconscious. As I couldn’t talk my hoots of displeasure amused them. I indicated that I wanted purple, and pointed my good finger (post seizure) to the skulls on my shirt – Dark Purple with skulls!

I lay this afternoon for more than an hour trying to sleep, on valium and pain pills but could not. The voices talked while I lay thre. So when Linda came home she sat on the bed and listened, helped me while I unburdened and cried. In some ways, I can and am already ready for death, in the way one makes a list and does the chores: Given Medical Power of Attorney over – check; Arranged a will – check, Arranged a living will – check; started making special bequests known – check, talked to Linda about going on a trip, back home, leaving this behind, after I am cremated, at least for a week or two, so she is not alone – check.

But then, some days, in the quiet, I realize, that while it feels the same like when I am about to walk out the door on a long trip, like I looked around at my stuff before the trip to Japan. That feeling I get, making sure that most things were taken care of, realizing that I wouldn’t see my books or DVD’s and never got this project or that finished in time; that whatever is, is and it is time to go.

But then it sinks in. This isn't just a checklist, or a trip. Because I won’t be back. And the weight of that rushes in.

I have fought, and fought, and fought, and fought and right now, going into day 18, I cannot fight anymore. With my care agency, with the doctors, with the specialists, with anyone who wants me to suck it up. You come here and suck it up; you go between appointments up to the Y to force yourself to exercise to keep that circulation going, and then overheat that night, and yet after 6 hours of sleep get up for 5 more hours of medical appointments. No pain specialist yet, three pain pills left. I have fought and fought, and fought and what did it get me? What treatment am I on? What more is asked that I 'should' have done?

Oh yes, due to all those test, now we know how many different parts of me are non-functioning or failing. The times I am not testing I am instructing or explaining to new caregivers what doesn’t work, and what that means. I cannot escape it, it surrounds me. And yet, I want to escape it.

I have lost a year with Linda due to those tests and fighting. This week, last week, I have lost 10 days I could have send postcards to people I care about, to people who are alone, who are housebound, who are lonely; I could have MADE A DIFFERENCE but instead I was on the medico treadmill.

My GP won’t use the D. word but he doesn’t talk beyond five months; indeed in a town where EVERYTHING takes nine months, I am getting my tests done from the ordering of them in 2 days, getting seeing my new specialists in six weeks instead of six months after he talks to them. What do you think he says that makes only one of two specialist in town put me at the top of the list? That convinces them I can’t wait 5 months?

I was and am tired, exhuasted, in pain and I cannot escape. There are no tricks, there are no moves. I will not fight anymore today. Or tomorrow. I will send postcards. Becuase that is what I want to do. Though as my careworker last night said looking at my little desk and the box of postcards, “Not much of a life is it?”

It is LIFE, though, isn’t it? And that is enough. And that maybe someone smiles out there because of how I choose to live, while I can continue to find and send postcards, it may not be enough, but it is something. I have been working on another project. Maybe it will have some use, maybe it won’t. For me, Xmas and Birthdays, this year, are when I have the energy to celebrate. That is now. This is my Xmas.

I know that every day, or night or activity in which I stress myself could be my last. I also know that I have a body built of exercise done almost every day (or four times a week after disability), of never smoking or drinking. And I believe that I still have a long way to drop. Yeah, I’m below a lot of disabilities now; a partial quad without traumatic injury among others. But the heart beats on, and I can get a pacemaker when it doesn't, and the lungs breathe, and I can, it seems get a diaphragm pacemaker, if I find anyone who knows how to install it.

I want to see the cherry trees blossom again.

Right now, I get heat stroke at 22 degrees centigrade and Frostbite at 13 degrees centigrade, yes that is far above freezing (as Cheryl or Maggie will verifty if you don’t believe me). I cannot survive traumatic amputation, or surgical, not without a lot of transfusions and some luck. So, as Janet, the diabetic said, “Be glad of the bits you have while you have them.”

I asked Linda on Saturday to get pictures that day, that weekend which showed me living. Living in that day. Because I am moving toward death, and I can either, in pain and exhaustion, be dying. Or I can live, in pain, and suffering, yes, but live, the hours and minutes of smiles and getting to know people, using my gift to talk to people. To joke, to see the grass and trees, the cat crossing the street, children throwing tantrums, people angry on cellphones; and on the other days, to live, even in a room, closed off, writing postcards, writing blog posts.

I love living.

O that there were more to go around.

Monday, July 28, 2008

Luminara 2008: PrimalFire, Poi, Fire belly dancing - the Music Video!

At Luminara on Saturday July 26th (well, we didn’t home until it was technically Sunday!), Nick Woosley and Playpoi were advertised as giving the performance, but the group Primal Fire gave the final performance for the night out at the Cricket Grounds. It started at 10:40 pm (well, 10:45 pm). To get there, I had to go through Beacon Hill Park, and cross the road. I then dogded the steel fenced and a place where the spectators usually sit on the grass slope. It was a nice STEEP slope, and Cheryl was with me. I thought I might try doing flips sideways, to edge down the slope one wheel and wheelchair width at a time. But I told Cheryl (and all the guys and skaters by the fence) to get back, WAY back. After my first flip around, I held one wheel and let the chair weight flip it around, only to find the slope was over 25 degrees, probably over 30 degrees so my downhill wheel wasn’t touching anything! It was in that AIR! So either I topple over and over and over down the hill or I let go. I let go and just hoped for the best (the field was all in pitch black, in preparation for seeing the fire show).

Cheryl reported the guys were going, “OH MY GOD!” and lots of that, and “She’s going to crash!” (It took me like 10 seconds to get to the bottom), and “Oh no! She’s crashing, Oh my God!”

Except I somehow, except for one bump where I had to lean back to stop front flipping, made it down. As the momentum rolled me on I raised one arm in my electric glow rope, muti-colour chair and gave a surfer “kowabunga!” waggle to let them know I made it. Up at the fence the guys were, “She made it, did you see that, she made it!”

Anyway, I know how to make an entrance….or break my legs (they were strapped in, remember), depending!

Cheryl played the crip card one we got to the crowd and asked, “Can SHE see too!” and so then I was up and at the front of the roped area. I took mostly still images with my camera and Linda took movie and now I have my little editor working again so I made a nice 2 minute movie of the best of Primal Fire at Luminara 2008 (When I made it I believed it was Nick Woosley and Playpoi via Luminara site, sorry - if anyone knows how to change the text IN a video, let me know). Here it is, you can get a bigger version to play on Windows Mediaplayer or Quicktime if you want by clicking on the Vimeo logo. I hope you enjoy. (done to the French Song ‘lolita’ (if uploading is down, click on Vimeo to go to it directly)
Luminara 08: Nick Woosley, Playpoi & Fire! AMV from Elizabeth McClung on Vimeo.

Tomorrow I will try to make a film with the best images of Luminara 2008, Victoria along with Elizabeth’s tricked out glow wheelchair films (Linda filmed the wheels going round for example). And then give you the whole A-Z. Right now, I am off to the hospital for my CT or CAT scan, dunno – one of those!

Sunday, July 27, 2008

Luminara: Fire Dancing, Fire Belly Dancing, Blue Angels and my Bling Wheelchair

Hey, we just got back from the Luminara Festival which takes place once a year. I am beat so I have these few photos, and will give you the full story tomorrow, okay?

First, while I napped, Linda and Cheryl worked together to Bling my wheelchair into an Electric Parade, taking it apart to put glow rope everywhere.
So then I was up and we were off, Cheryl with glow-sticks on her cane and me with my bling chair (very, very popular with the kids who wanted their parents to get them one).

Luminara is a family friendly, almost accessible event once a year where Victoria does not act like it has a stick up its ass. It is the collective “alternative” for goths, geeks (I was told that “I had the wheelchair from the future!” by one nerd), drug users, Ren girls (in big Ren dresses), pagans, as well as anyone who wants to wear a costume. It is in Beacon Hill Park were across the many ponds are scattered displays, like this Torii on the duck pond.
There are also fixed light displays, like these drummers. The festival starts to finish at 11:00 ish but we didn’t get back until midnight (then I had a seizure, yada, yada).

There are also groups which combine costumes or moving events, like the BLUE ANGELS, who are these girls dressed in blue, (lots of Blue) which are lead by drummers which turn it into a giant rave. Because crowds, many of them high, follow them. One guy stopped in front of my chair and just kept saying, “The COLOURS! I mean, you have THE COLOURS!” until his friend pulled him away to follow the drummers.

We continued on because earlier in the day at the Moss street market, thanks to the influence of Neil, we talked to some people selling Poi, including Nick Woosley of Playpoi. Well, not a lot of people get into giving advice on how to do fire poi to a girl in a wheelchair in less than five minutes (use kevlar and wear cotton!). He told us he was performing at 10:40 at the Cricket Ground and there we went, stopping to take a picture of the Native Haida Village, with long boat and long house display.
Then stopping to take a picture of a Japanese drum with the reflection in the water (lots more pictures tomorrow!)
Well, Nick and the Poi fire Dancers were pretty darn impressive, like this guy who lit up this wooden staff, started twirling…
Then he throws it into the air….
And catches it going into a double wraparound of his back, his head down, doing spins and wrap arounds on his back with little balls of fire flying off from the speed. It was pretty impressive.

However, that part was followd by the...um, to be blunt, EROTIC fire dancing. First this is a married couple came out, with dance music, fired wooden staves and then started to dance.
And then WHILE dancing they got..um…close…and starting using each OTHER’s body for wrap-arounds (spinning their staff around their partners back and then back into their opposite hand). It was HOT, like erotic hot. And I said, “We could do this at home!”

And Cheryl said, “I don’t think your building manager Fran would be too happy.” Sorry, but fire IS erotic, and a married couple doing an erotic dance WITH fire, I was…um…aroused. And then SHE came.

Remember how I dated “danger girl.”

Well out come this girl with all the raw sexuality of danger girl, barefoot, a couple scraps of clothes on her with a steel hoop at 7 to 8 fire balls on it, and then she starts doing a hula thing with it going around her hips as she belly dances around the field.

“I got to get her number.” I say in a husky voice, eyes transfixed.

Cheryl sort of smacks me upside up the head. “You’re married!”

I look at the girl rotating her hips on the field, a ring of fire rotating in time to music and make a little moaning mewling noise.
So yeah, it was a pretty good night. Tell you the whole story and hopefully a Fire Poi and Fire dancing video tommorow? Have a good one!

Saturday, July 26, 2008

I am ordered to create a DNR so I can be killed, plus I get postcards!

Well, this is how I started the day, which indicated that I am plain tuckered-out. This is also my first appointment, an early morning wheelchair seating call for my new computer chair with recline and headrest for post-seizure and the hours of fatigue. We will be submitting for a basic electric one, as this manual will only service me for a few months at best, until I can’t self transfer anymore. But when the government is paying, if all they will pay for is manual, that gives more months to come up with a solution (which I guess could be me sitting there all day until care come with a catheter and bag). The wheelchair meeting also fixed my indoor chair so it can go right into the bathroom now, full access.

This was followed by the “big meeting” which was then followed by calls from many people and organizations. This included the BC epilepsy society (now a member) who said that 30% of people become epileptic or have ‘seizure disorder’ later in life due to brain injury, stroke, etc. Also talked through some seizures my GP was saying some of mine weren’t Clonic Tonic, and they were. His seizure info is sort of out of date (by like 40 years) and she said that currently there are about 200 types of “common” seizures for people under the epilepsy umbrella, and 2,000 more uncommon ones. I am getting a packet of info called, “Why it seems you spend your life recovering from your brain going “FITZZZZ!”?” But also got clarification from them on what an “emergent” seizure parameters are, as the care giver agency started with “any seizure requires 911” and we started asking about absent seizures (where I stare into space on a pause button for 10-30 seconds), and they said, “oh no, not that one.” And we asked about another, and it was “oh no not that one.” And then it turns out all they really know or care about are Grand Mal’s.

The afternoon ended with a call from my Case Manager saying that the Executive Director of Beacon, has unilaterally decided to negate the collective care agreement VIHA, Beacon and my Medical Care Executors agreed on and now has limited my care, retracting the agreement until I go to my doctor and give her a BLANK DNR (Do Not Resuscitate Order). This was timed at 4:25 so all the people at the meeting were gone and will not be back until Monday or Tuesday.

What the executive Director has personally asked me to provide is a document which dissolves Beacon and or its workers from any liability, up to and including if after a seizure when I am helpless, a care worker puts a pillow over my face. Or if I fall face down and the care worker doesn’t turn my head so I can breath. Seriously.

The care plan we crafted was to the specs of the Epilepsy society of Canada; using PT equipment and headrest, along with tilt and recline to make sure airways are clear, and aspiration into the lungs does not occur during recovering. What the Executive Director has done is choose to discriminate on my care BECAUSE I have epilepsy. She wants it so that I MUST give her a piece of paper so that even IF the care workers do NOT follow the plan we have crafted, and do not clear my airway (for which the care plan was created) and I die, then Beacon will not be liable. Why? Because they have a paper saying I have told them NOT to resuscitate me (which is the opposite of the two hours of meetings between the three parties today). Except the Executive Director is blackmailing not all of the clients, just ME, in order to get that DNR. I will be talking about this in length on the BBC, because you may remember a story about a school who made a student in a wheelchair who had seizures sign a DNR (So Not Resuscitate) in order to attend classes. That was on CNN. I think the emotional trauma was several hundred thousand dollars worth. Having the people you pay to make sure you STAY alive blackmailing you to give them a paper to ensure that they can watch you die…..gosh, I guess Xmas came early for me. Because, she didn’t choose to discriminate against me because I am an abrasive, arrogant and aggressive person who irritated her (or even a lesbian, or left handed). Nope, she is discriminating because I have EPILEPSY! OMG! Gee, I wonder your Honorable Human Rights Judge if there is any precedent to follow regarding discrimination due to Epilepsy in the last hundred years in case law?

Yeah, I was mad for two minutes, but then I thanked the manager on the phone for making my weekend. As by the end of Next Week, I will try to make sure that on CNN, BBC, CBC, and up at the Health Ministry, the name of Isobel Mackenzie, the Executive Officer of Beacon Community Care is synonymous with Mengele. Hahaha! Seriously, if I wasn’t dying, I would be happy I am about to be so rich; but at least I have the satisfaction of watching her squirm over the next few weeks with hatred of me. I am making up my, “Isobel Mackenzie wants cripples to die!” placard for my protest (got to be Camera Ready) in front of Beacon!

Anyway, that consumed a great deal of time today and the rest has been spent in anime, and the arrival of my 150 postcards from Japan! Hooray, I am just starting to enjoy the variety, like this school trip postcards!
Or then again, what about a nice goth loli card, that would be fun too yes?
Serious, I am very exhausted and near to another seizure and since I have every day until next Thursday already booked, the chances that I will have a health breakdown are very high. Beacon Home Support asked us that they be immediately notified when I am taken to ER and the hospital. They even want all the medical details. Is this so they can immediately update the care plan? No, it is because, if I cancel care within 24 hours, VIHA has to pay anyway. So if they KNOW I am at the ER, instead of MY careworker waiting at MY place, they can reassign them to another location and double bill for the same hour. Do you feel the love? Do you? I do! I know there is probably a banner in the office covered with dust with the phrase, “Care comes first!”

Okay, now what would postcards from Japan be like without some Traditional Japanese girls, like Shrine Maidens and School girls?
And finally, we also picked up some Yuri (girl/girl love!) and some (yaoi) boy/boy love. Mmmmm, anime goodness. And yes, when the post card arrives, just tell your significant other that “they are JUST good friends!” Yeah.

Tomorrow is Luminaria – I am hoping I will be conscious! (Dream big!)

Thursday, July 24, 2008

Is observation and testing the same thing as giving a damn?

Following this weeks tradition of short notice screwing of EVERY SINGLE DAY, we had many emergencies today of which was not the least that a) Dr. Atwell-Pope ignored the instruction that she was no longer my neurologist of record. She called my GP to convince him that the Neuropsych unit where people with MS, Lupus, epilepsy and others learn behavior modification to keep their many symptoms (some of which are assumed to be stress related and thus bogus), in check and not constantly require attention from doctors or other medical staff was actually all about Neurological investigation (when all the literature FROM the unit says otherwise). And b) My GP decided he needed to speak to me today, this afternoon.

So I meanwhile was in my continuing quest to get another Home Care Nurse than Edriss, which it appears had never been done before. And the further I went, the more supervisors I talked to, the more you could have made ice over the phone line. First, CLIENTS don’t tell RN’s what they can and cannot do (Because Clients are usually 75 or so), and second, it was ass covering time. It turns out now that the head of the nursing section of VIHA has been added to tomorrows meeting (notified at 4:00 pm today, meeting tomorrow at 11:00 am). I asked if that meant we would talk about getting me a new nurse. The Nurse supervisor said, “All the parties will be present.” – and that is literally the ONLY sentence she would say. So fun, as I try to replace my nurse who has commandeered MY apartment for HER meeting.

Meanwhile my GP, because I had made a complaint against Dr. Atwell-Pope felt threatened, as I am “abrasive” and highly intelligent and would HE then have a complaint against HIM? I told him that of all the doctors who refused to treat me from sexual orientation to religious beliefs, I NEVER made an official complaint and I never expected to. Dr. Atwell-Pope had, in her own practice and now with her interference in my relationship with my GP (like this meeting for example) was causing a detrimental impact in my health instead of assisting in my healing. She had ordered tests, not to try and find out what was wrong or treat me but to prove she was right. This occurred even after her theory had been dismissed by her mentor, she continued in ordering the same tests repeatedly hoping for different outcomes and trying to stop all treatment from all parties, including my GP, because it would go against what her “instinct” told her a year ago. By the time this was all explained and everyone was okay, the talking on the phone for 7 hours, the week of exhaustion and the being in a very hot room made me put down my drink because “something was happening” (in EMT speak a “sense of foreboding”). Then I had a seizure. The Doctor observed (did nada to help me apparently – I was, um, busy, at the time) and Linda narrated what was going to happen next.

This made Linda’s day.

I feel like I have been repeatedly beaten.

The doctor has ordered an emergency CT scan. He will start me on pills next week. I spent a great deal of time not fighting the system in bed but Linda is happy because now the Doctor has SEEN, and he believes. Which makes me feel a bit like I am the miracle worker only in reverse, I have to create a disaster in myself, to make people into believers.

And starting tomorrow at 10:00, it all starts again! We have eight people in the meeting regarding care of my seizures. I told Linda I don’t know how I am going to stand the heat of being in a room with seven people. She said, that maybe (with a smile) I won’t be able to.

“You want me to have a seizure!” I yelled outraged.

She admitted that it would be very effective. I pointed out that it is VERY painful and that no, I cannot go around having seizures and losing days just to make points during meetings however USEFUL that might appear to be. Not to mention I don’t have control over it (though heat, stress, and fatigue are all factors).

Sigh, if this week ends, I swear, I am ripping out the phone because having a “week off” from my medical week which had two meetings a day and 5 hours on the phone minimum followed by ANOTHER week of medical tests (but this time, they are going to be “emergency tests for Seizures, including a EEG test after I am completely fatigued…..at night…in a warm room) Please, just let me write a damn postcard. Please. Let me watch a DVD. Let me send a gift. Please. Stop testing me and start CARING about me.

P.S. (1:55 a.m.) I actually did stay up past 1:30 a.m. and went to bed relatively content, a bit of my life taken back. To see how and why, go here

Wednesday, July 23, 2008

A sum up of medical stuff, but Yuri, postcards and ANIME GIRLS!

I have yet to see my GP, which I will see at 6:00 pm, so a very late nap for me (the purple/blue Beth). Oddly, my heart rate was elevated for 6 hours yesterday over 100 bpm, at rest. And when agitated, going much higher than that (like 140), which is kind of tiring. So tiring that when I came to bed, I had a small seizure and stopped breathing, and it was an hour and two incidents of mouth to mouth resuscitation before I was breathing on my own, even with oxygen. I got to sleep at 4:00 am and was woken after 8:00 by doctor’s offices, and then every 40 minutes there-after, though I kept giving them Linda as the contact person. It seems that the receptionist for Dr. Atwell-Pope is new and thinks that I am someone else and that I was calling about being refused to see Dr. McClellin (who is that?). Then Cool Aide, called (my GP clinic) and I explained part of the problem and explained about last night begged them to stop calling me. That was at 10:25. Then they started the road construction outside. So I will be lagging a bit for a few days I think.

But before we go on, let us take a nice break and just gaze at these wonderful anime girls (my anime girl post cards arrived, all 25 of them!). See, this is what is really important......ahhhh, don't you feel better? Okay onward!

In case you are tuning in, the seizures which have been explained by Cheryl and told to my GP by the VIHA nurse prompted him to action in calling Atwell-Pope, who said I could only be diagnosed in the Neuro-Psych Ward (and I was going to be admitted under an emergency basis in the next two weeks). This seems a very odd way to diagnosis everyone in Victoria and Vancouver for epilepsy since it only has 10 rotating in-patient beds. Anyway, it turns out that under the UBC neuro-psych ward there are four or five admittance rules, and I don’t fall into them. For instance, I have not had a Psych consult yet which is required before admittance. You can’t be admitted if you are immune suppressed (hand up), or if you have an autoimmune disease (hand up – the head of Neurology teaching and Atwell-Pope’s mentor put in her letter that she believes I have an autoimmune disease which is causing the autonomic failure). Last and most important I cannot be in emergent condition (hand up – like not breathing on my own?), or likely to need emergent attention (hand up!).

Also, looking at the big picture, I have anemia which is getting worse without a known cause. I have an undiagnosed autoimmune disease (let’s ignore the autonomic failure which causes heat stroke and the heart problems and the oxygen conversion). Which means that I need to see someone who can address and test THOSE issues, which will kill me, particularly the anemia, without transfusions or other treatment which is needed in a hospital not an neuropsych ward with their MRI and CT scan. I am seeing a Rhumatologist in less than two months. He can diagnose and treat the anemia and autoimmune disease; which to me is a priority. IF after that, I still have seizures, we can examine how to get those treated (like in the states, or after seeing a autonomic failure specialist). The problem is that everyone is going around talking about “Conversion” and “Disease of exclusion” and I already HAVE a disease of exclusion: either MSA or AAN – both of which have hospital records, expert opinions and test results to verify. Conversion disorder has….no evidence for but much against (like the nerve conduction and MRI tests). Mezei mentioned she did have one patient WITH autonomic function…..but she believed that the autonomic failure was a form of “Conversion Disorder” (this is medically considered impossible).

But the thing is, I am not spending any time more than today on this, besides changing the medical power of attorney so they can’t use my stroke and seizures to say that I am unable to make decisions and thus the doctors need to make decisions for me (they use this for mental illness too – say that your denial of getting ECT, which they HAVE as a treatment in the NeuroPsych ward they are sending me to, is just a manifestation of your illness and that with a few zaps!……). I am concentrating on Postcards, writing postcards and doing a secret fun project because these people will only steal my current quality of life, such that it is, if I let them. Get me to a pain specialist and a Rhumatologist and then, if or when there is time, we will examine the seizures in the USA (or the UK…or Mexico…or Columbia…or Cuba…or India) where they seem to be able to declare epilepsy without needed a psych evaluation or putting the person in a locked neuropsych ward.

So the news that my anime girl postcards arrived means I am in heaven. Only problem is that I want to keep them all for me! I mean, look at them, who wouldn’t?
But this will give me a lot of options for the people who want anime girl postcards and the Yuri lovers and the lesbian and bisexual readers who want postcards (never too late, just email me at mpshiel at hotmail.com with the title Postcard). See, to me, THAT is what is important. And yes, less pain and maybe some treatment, but I can’t control that but I can control this. So I can send out these postcards and make other people happy. I hope THAT isn’t considered a mental illness yet?

Anyway, I wanted the people to read here to have something NICE to look at and to know that I will put little updates but I am going back to writing about disability issues, not just my wacky doctors. And life issues and squirrels and having fun with friends and the life of a woman in a wheelchair. And that is what I am doing right now, choosing life, to LIVE all the minutes I can, by doing what I want and enjoy doing, which is postcards, and emails to people, and other secret special projects (some of which may have started to arrive). You have endured my terror, how about joining me in my living? And sharing what you are doing to affirm your living this week? Look at these (I have 25 of these postcards, so lucky!).

Tuesday, July 22, 2008

They are coming to take me away…..

Well, this is the long and short of it. Because Cheryl came over and verified my seizures which have also been verified by the home care workers, my GP was notified of this today through Victoria Island Health Authority. He was told this by a nurse Edriss who has told me SHE is the only person who can come up with my care plan and give it to Beacon, and will not take any instruction from a GP OR a specialist. Her instructions for LIABILITY reasons, is to use standard protocol and to send me to the hospital for EVERY seizure, not simply put my head back and wait for 30-40 minutes. Nope, the workers are not legally trained to assess seizures and so must send me to the hospital EVERY TIME. This was decided by her, and now the RN at Beacon has been calling all my workers (while I am there) to tell them if they DON’T call 911, they will get disciplined. The only way to stop this is if I am assessed ith epilepsy (and even then it is HER decision if they should 'allow' me to have the seizure). So I guess $85 bill 10 times a week coming up? But wait...there's more!

The news of my seizures from Cheryl and VIHA has prompted my GP to call my neurologist because HE, my GP, (for liability reasons), cannot prescribe me Dilantin or any common anti-seizure drug without the NEUROLOGIST telling him to. So he calls Dr. Atwell-Pope (the one who thought I had conversion disorder and thus the tests would prove I have no nerve damage....except I HAVE nerve damage and thus her conclusion was that I MUST have conversion disorder and to lock me in a NeuroPsych unit). My GP and I agreed back then that the idea was currently pointless and if nothing had improved in a year or so we would consider it. I have not yet filed my complaint against Dr. Atwell-Pope with the College of Physicians, so she is still the Neurologist of Record. My GP wanted me admitted to the hospital here so that I could get observed and registered as an epileptic or with some other type of seizure as the number of them seems to be increasing (he believes they are temporal lobe seizures). BUT it turns out that in the last year the number of Neurologists with hospital privileges in Victoria has fallen from four to ONE (Dr. Bill Martin – long list to see him!). So without waiting a year and seeing Dr. Bill Martin I CAN'T be treated in Victoria's hospital for a Neruological problem (no seriously, this is true!).

Dr. Atwell-Pope has instead called Vancouver and her mentor for an 'emergency booking' (all this happened this morning, Linda was called this afternoon) and I am now booked to be put into the Neuro-Psych ward for indefinite observation within two weeks (they call, I am to go, might be tomorrow!). I cannot take my computer, my hospital bed, my air conditioners, my medicine or my oxygen. And while I “should” be able to leave, it will be at the determination of the specialists (including Dr. Atwell-Pope’s mentor on Conversion disorder!). Needless to say, I am not very optimistic as Linda said to my GP, “Many, many times, specialist have told Elizabeth, ‘if you don’t do what we tell you to do, we will lock you up.’” He asked if that was here in Canada or in the UK. She said Canada.

I just finished talked to my GP and it appears that the ONLY way I will get treatment is by diagnosis. The GP stated the ONLY way is a) enter the Neuropsych unit because my seizures are increasing and I can’t go to the Victoria Hospital or b) Go down to the States, get a diagnosis there and come back with the diagnosis which can then be treated. He reminded me that I myself said that it could be conversion (I believe I said, “I would RATHER it be conversion than the alternative, but since my nerves ARE destroyed, I see no need to continue down that path.” At which point he agreed) and while he doesn’t think it will be that in the Neuropsych they will do ALL the tests, including, yes, an psychological assessment and treatment of me. But that I will get other hospital tests too.

The problem is, since I cannot get a needle without Linda as part of the protocol (she acts as the tourniquet), and I have found specialists, particularly ones in psych wards to ignore whether the patient has a needle phobia compared to their own desires. That means if they try to give me a needle, I will “act out”, which means I WILL almost certainly be put in restraints and then given needles or have blood drawn anyway. This I honestly believe will make me insane, as it would be for me to be abused, or tortured (and then be 'assessed' on coping by my torturers) and create PTSD or dissociation or fugue states if I am forced to have these tests without having the control to stabilize my phobia. Or rather, aside from my physical health, I see this as a FAST trip to being “classified” due to the stimulus I will be getting, rather than actual observation as people like Cheryl or others have done.

Linda has already said she is unsure how exactly I am supposed to sleep with this. Not this afternoon but like....ever. Knowing a call to be 'locked up' could come at any time. Because I guess, with my fear of being locked up and given needles, why do I end up being locked up in a PYSCH ward because I am PHYSICALLY ill, because I cannot convert oxygen, have anemia, have nerve destruction and the rest? My GP has assured Linda that if the doctor on the psych ward refuses to release me that he will help Linda get a lawyer and help fight to free me. But, if it comes to that, I will continue to be locked up during all that time. Needless to say, all they need to do is look at yesterday’s blog and they can do a “harm to self” clause and keep me there. I am terrified and being told that THIS, honestly, is the only way, I can receive treatment in Canada.

So, would YOU go?

Working on postcards, and my nihilism; dreams of being skinned, skewered

I spent a great deal of time today showering, getting dressed, doing laundry and then working on Postcards. There are four to five stages to each post card before they can be posted. I have three postcards finished and another 27 to at least stage one, 11 of those to stage three. The first stage is matching the right card with the right person, trying to find something they might like, something beyond just a picture. I have to hope that in spending time I might be able to find something that a person will find special. Here is less than half of the matched cards that I am sending out this week.
I wrote up a small piece with more pictures, and more about the woodblock pints in the other blog, The Postcard Project.

The last day or two, and particularly today I have been fighting a nihilism which is stronger than I can remember. But then that is the problem; what do I remember? I cannot remember a time when sleeping was easy, or I didn't overheat in sleep; cannot remember a time before the summer, I am time bound, house bound, pain bound (I am brain bound....damaged). I cannot remember, literally, what it means to be thirsty. I cannot remember what it means to wake up to a future. Tonight we sorted all my 'business clothes' to sell off; suits, and blouses because a) I will not have a job and b) I am half the size now.

This weekend I got something back from my disease, I got the chance, the choice to have a day, a half day of sitting still but being present when fun goes on. It may cost a day at the start and at the end but now I can travel to Port Angeles and beyond. But also, the cost, which used to be absorbed in afternoon sleeping, or overnight sleeping; is not felt hours later but is now felt in minutes. I take a boat and the back and forth exhausts me. If it is late in the day I either have a seizure or lie insensible, until time to be carried ashore, to be put to bed and start paying the other end of the price. But I have that choice now. I did not before. That should mean something right?

I have not cut myself, though I know not why. Am I so good at resisting or so tired? Yesterday, after a day and a half of working and thinking, I finally wrote something worthwhile, something that matters. That piece on biology and disability is more important than any academic paper I went to a conference with. What I wrote today; this does not matter.

I have a wish, a strong desire; I want the hospital to come and operate, to take out all the parts that can be donated. I want them to cut me open and take out my organs, take out my eyes, cut away and peel off my skin, leave me there on the machines. Take it now, while they are still worth something to someone. I cannot tell right now emotionally the difference between the future in that wish, and the future of waking up every day. They feel the same.

I hate to sleep, I hate lying down and the pain, the pain coming in and in; I wake in seizure or because of the pain, sometimes in heat exhaustion and trembling, but not refreshed. Maybe I did once, but I cannot remember, literally.

There is a Russian Song, koni priviredliviye, which the singer sings that his horses and carriage are on edge of the cliff but he must keep whipping the horses (that he is driven, his life driven but still he must go on). I don’t even feel that control, I feel that I am a hearse carriage, without driver, and the horses run on along the edge of cliff, while I lie in the coffin, waiting.

So some feelings of loss of control? Some pain and heat influencing my thinking? I don’t know. I actually am so used to pain along with a certain lack of feeling I have thinking of finding something like a meat skewer and seeing if I can run it through my body, but slowly. I want to see what I feel, what kind of pain there might be.

That’s not happy thinking right?

Yeah, I know I’m a coward, yeah, I know that most of my readers have conditions worse or the same as I and have lived it longer than I. And apparently they don’t despair. Apparently they don’t see a wall where-ever they look. I don’t know why it is that I cannot be a better person than this right now. I remember after one nap a few days ago that for a few hours I had a feeling of peace. I don’t want to lose that memory. I will lose that memory. One, two, three seizures and it will be gone.

I know that dying is easy. I don't do easy right? I also know that sometime in the last week, I tried to leave, that’s my confession.

During a seizure, having passed out, I found it, that place, it was bright and calm and I didn’t have to think or worry about anything, and I didn’t have to breath, didn’t want to; as long as I stayed in the light. but one of my care workers brought me back. And I kept trying to pass out again so I could go back into that light, but it was gone. That’s my confession, that I didn’t fight. That I found someplace that felt good and I didn’t want to come back here.

But I am here, right. I’m supposed to want to see what happens next.

Is this a chronic condition thing, or is this just me? Weak and cowardly me. Why is it wrong to dream that people take the organs and eyes and skin from me while there is still use to someone in them, why am I supposed to wait until no one, not even I, can make use of them?

Honestly, this is what I think about. These are the thoughts that come to me. I was annoyed earlier becuase I was in so much pain and I couldn't find any scissors or knife within hand or arm reach to mark that pain upon me. No way to mark it and no way to end it. These ARE my thoughts. I'm sorry.

Sunday, July 20, 2008

Disability, age, illness, medicos, society and biology

Yesterday, I sat in the wheelchair bathroom on the Coho (the lumbering ferry between Victoria and Port Angeles), and watched the pitter patter of feet. I was sitting there because along with all the other parts of me that don’t exactly work anymore, that includes having a normal dump. In fact, I would be having constant diarrhea if it weren't for taking a prosthetic probiotic every day. This is because I don’t have enough blood circulation to keep the natural flora and fauna alive in my intestines. Also, like Parkinson’s patients, I have loss of muscle, which when I say includes the right side of my body (including my tongue and swallow muscles), doesn’t stop at the arm, but includes the ability to move things along the intestines.

So, I was IN the bathroom because a ship going BACK and FORTH like a see-saw actually replicates the motion of an intestine and I was hoping to do what I had not in several days: have a bowel movement. Except that many females see the “disabled bathroom” as the “big roomy bathroom” or “the bathroom I can watch my child have a pee easily.” So while I sit there alternatively doing a bit of pushing and waiting for that feeling that the…um…cannon is ready to be fired, people come every minute or so and check to see if my stall is empty (it is on the left hand side, away from other stalls). And some give up and go to the other stalls, some wait 30 seconds and THEN give up and some go out and then come back again. Until the whole, weight of social expectation for me to vacate this toilet makes me want to scream at the next pair of feet walking and waiting, “This is a DISABLED TOILET, for people with DISABILITIES, and that might include HOW WE EXCRETE stuff!”

Today, I am talking about things entirely natural/biological and how for some reason we the ill/disabled (all of us really) have entered into a social agreement with both the medical establishment AND society to not talk about this stuff. I am talking the biological things of being human, and being female: hormones, burps, saliva, gas, bowel movements, pee, menstruation, hair (both the arrival and departure of such) and the changes in these things with illness and disability (and age!). Most of this will apply to males too, though if you start menstruating, please see your GP RIGHT AWAY.

By the way, I apologize to all my Japanese readers (particularly Ai) who will find this post probably so openly rude that either they or I am supposed to throw myself off a cliff. See, a couple years ago I was a “hold breath, go in, do the business and get out” public bathroom person. In fact unless the public toilet was empty, I would not even fart or so much as take a dump. Becuase I just couldn’t come out and do the washing of the hands while pretending I have NO IDEA where that stink has come from (even though we are in a PUBLIC TOILET!). I was THAT trained.

Things have changed. When I was packing in the apartment to do an overnighter over at Cheryl’s place my brand new, and super nosy (and slightly obnoxious) care worker was there (For example, she went, “God, no one does the dishes, this is just like at home, where my kids just leave me piles of dishes to do” – Well, actually YOU are here to do the dishes lady, that’s what I told the scheduler when they told me they were putting in someone new, and I don’t think your kids pay you $20 an hour; so that's why you get $40 to wash some dishes and put them away and make my bed). And I was adding an extra pair of underwear as well some jogging bottoms in case I peed myself that day during a seizure. And the worker wants to know if I am leaving for a while. I don’t tell my care workers my movements, and not on our first date, so I said I was going for an extended appointment and that these were in case of a seizure (true). Well, the thing is that planning and packing extra underwear for when you WILL pee yourself and there is urine all over your clothes is pretty surreal. But once you have HAD that happen or a few close calls, then it isn’t surreal, it is just IS. And while it may not be something people talk about, it is my reality (and for more people than just me).

Another example is how everywhere I go, I carry paper towels or tissue. This isn’t because I have allergies but because I use oxygen a lot. And the nasal flow makes your nose drip, and it also give you bloody noses (slow dripping for me). Also after a seizure, I sometimes, depending on the seizures and how I am lying, drool on myself, drool on the floor, drool on whatever is around. I can’t swallow and half of my face is doing the ‘seizure leer’ so drool happens. That’s just reality. Also my care givers or Linda may try to help me have a drink and I can’t swallow and it runs out the side of my mouths and down me. That’s why we moved to the “suck and swallow rule” which sounds like some sort of brothel extra charge but means, I have a straw and if I can’t suck liquid up the straw, likely I can’t swallow either. I am supposed to be ashamed of this. Because when this happens people look away, even as Linda has to search for paper towels and no one offers them because they are so busy NOT looking (which means they are). Because I am breaking the code of what is acceptable biological behavior in public: The one which still lets a guy adjust his ‘package’ every two minutes but I can’t drool.

Now, thanks to Sara at Moving Right Along, who mentioned menstruation, I can finally talk about this simple and monthly aspect and how it relates to the medical establishment. Because the medicos, while accepting that they are looking for often life changing problems or that you are sick or disabled seem to believe they are treating some form of robot. Before going into the MRI, I was asked, “Do you have metal shards in your eye?” I was not asked if I had seizures, and I was kept three to four times the length of time I was told I would be in there. And I came out unable to speak clearly because I was hot and on my back. I could have, depending on week and circumstance come out with pad full and a red spot on the lovely gown (or drip down in my bum). I am sure this too would have flustered the staff. But when did I sign up to stop being a biological being?

Because of seizures I now have gas the evening and morning after them. This was explained to me because as I gasp for air and don’t yet have control over my muscles, some air goes down my lungs, and the other goes down my stomach. Well, it doesn’t stay there but works through and shows up at the bottom end as a fart, actually quite a few farts. And since I have a few major seizures a week I could be horribly mortified about this. And I was until it was explained to me in a calm way that indicated that “This is what happens, this is the new reality.” Again, is that what I WANT to do in the MRI machine or during a medical procedure? No. But during weeks of lots of medical procedures, that is what is likely to happen. I will fart, maybe more than once. And when that happens, the techs say nothing or make the “face” because of course, they are testing for rare autoimmune diseases because I am WELL? Look, that contract I had which indoctrinated me about how or when I could fart or pee, or drool or how long bodily functions should take. That ended when my disability jumped aboard.

I was actually quite irritated at the lab AFTER they took my blood because AFTER fasting all night and morning I was to fill a pee cup ALL the way to the top. Now, I could have incontinence and peed that into my sheets or have it in my Depends I may have been wearing (common for my condition). And saying that I can’t leave until it is full when I am not allowed to eat or drink isn’t going to make more pee magically appear. Instead of incontinence, I have ‘retention’ which means that getting a stream to appear is sometimes quite a trick. So I was in the lab bathroom starting and stopping and starting and stopping and putting a fist into my bladder to try and get a stream going, so I could capture my pee (all accompanied with much use of colourful language), because it was coming out without pressure, just a dribble which flowed down to the anus and then dripped into the toilet.

I finally get the cup full and am rewarded with getting a jug and am to “recover” ALL my pee for the next 24 hours. Well, that isn’t possible so urinating becomes a big hassle of not just WAITING to pee but trying to get enough stream that more dribbles in the cup than down the outside. But that is my condition. And I am pretty sure that there are many other people who are out there with conditions which have their own manifestation and yet we are treated as if we should be embarrassed to talk or mention these actual diagnostic symptoms of our condition.

I rolled off the Coho yesterday with a dried white trail of drool on my chin and two cold break-packs peeking out of my top, having been shoved in my bra. That is what it took to make it across to Victoria. That is also what happens in Badminton, when one cold pack is warm, I toss it to Linda, she throws me another and I am out there on the court and with an “excuse me" I reach in and put it on my breasts, holding it in place with my bra. Yes, not exactly out of the Miss Manners textbook, but then, where is the “Proper Etiquette when doing a sport and not sweating” section?

Okay, now on to the forbidden topic: hair. Many woman have facial hair. But many treatments also produce facial hair; if you have thyroid problems, adrenal problems, or ovarian tumors or if you have steroids to treat cancer (even some birth control pills create facial hair for women) along with other medical issues you WILL end up with facial hair. Except women don’t have facial hair right? Well, that’s what we strive to make sure everyone, including other women believe. According to CNN, 20 million women remove facial hair AT LEAST once a week, and that is just the way it is (at least 40% of women will admit in interviews having facial hair AND removing it – about 5% need to remove it daily). Once you get deep into medical treatment, just wait for it (kind of like weight gain, that usually shows up too!).

So do I have facial hair? Yes. I have since I went into the deep dark of Anorexia for several years (throws your hormones into a blender of confusion and your hair on the scalp falls out while you get facial hair). In the last year, or particularly the last six months, that cycle seems to be happening on it’s own AGAIN. The doctors don’t really care, particularly male doctors (“I am sure it is just your thyroid dying” or “That is a non threatening condition”). Do I care? Hell yeah! But do women go, “So how is your facial hair growth?” No, we all pretend that nothing is happening. Some of the same way we pretend that legs and underarms magically lose hair. Only now I am too damn tired to shave BUT I do sports like badminton, so I try, every so often to shave and thus not flash everyone the fuzz when I raise my arm.

Since, the first thing everyone does in a seizure or passing out is touch my face, or fumble around my upper lip with oxygen feed, get it backward, fumble some more. Then no, when I am most helpless I do not like it that people are finding that I have facial hair, but what to do? I could spend time plucking, but like shaving, too much energy. I have been trying electro now and then (on prescription) on the basis that a) Laser is darn expensive and b) the idea of lying there while someone ELSE works seemed good at the time. Turns out that putting electricity through me, whether a nerve conduction test or to kill some hairs – both really punk me out. But with probable hospital stays ahead of me, what do I do? Get over it, accept that it, like so much else is now out of my control. Maybe. One woman I know who does shave daily (I had NO IDEA until she told me) said her greatest fear is getting into an auto accident and her husband has strict instructions to NOT rush to the hospital UNTIL he has gone home and gotten her shaving kit.

So that is me, I fart, I drool, I dribble on myself, I have issues with taking a dump, I have issues with peeing, my skin dies and peels off due to lack of oxygen, my toenails fall off because of lack of calcium and oxygen, my leg hair and other fine hairs have died for the same reasons. Lets see, what else? We covered my crown head hair going while more comes in on the lip and chin, we covered incontinence. Oh, I also experience “sundowners” which means I get a bit blue when the sun goes down, and I have emotional liability (rapid emotional changes). That means I cry, sometimes a lot, sometimes in odd places. You are not supposed to cry in an MRI, you are not supposed to cry while giving blood (but I did). Sobbing and hiccuping during the QUOTE routine procedures is seen as odd, you get the ‘face’ but the truth is that liability is part of my condition and even if it wasn’t, people get sad and cry, particularly when going to find out how much more their life, choices and options are limited. I expect that some people get angry and yell, I might have done that during medical tests or medico meetings once or twice. I seem to be stuck in a crying thing now and cry at least once a day. Is this why I am dehydrated?

What I am trying to say is that often conditions, disability conditions like CFS/ME, Lupus, Lymes, other Auto-immune disease, MS, cancer, and a lot of others have side effects into the “unspoken area” of bodily function. And if there WAS accommodation and acceptance then there would be more trying to understand and make a person feel UNashamed instead of the HR person saying to the person with irritable bowel, “We are giving you the desk nearest the bathroom because of……well…..you know.”

So apparently this blog post is about taboos, but if it is, it is about taboos that happen every day, from spasticity to facial dropsy (nothing as humiliating/amusing as getting a muscle spasm while serving in badminton and your birdie ending up a full court away LATERALLY - just have to laugh and say, “Um, that one got away from me….like 40 feet away from me.”)

I think I am lucky that my first experience with peeing myself was after a seizure at the pool. I was rag doll limp and that feeling like, um, lava rising came and there was NOTHING I could do and I whispered, “I think I am going to pee.” The lifeguard said, “No worries, that happens here ALL THE TIME.” And I thought, ‘true enough.’ Changed one of my most embarrassing moments to something that was almost ordinary.

My most embarrassing moment? Finally able to meet Linda’s co-workers at her Xmas dinner, only they decided to host it at an inaccessible house. Four men carried me in with female managers calling out instructions. Not subtle. They had three fireplaces going. The only table was the buffet table. That is where I had to eat. Linda had to cut up my food in front of her colleagues. Few to none would talk to her, but I could here them talking about me, the whole, “Did you see that?” and “Poor thing.” And “Like having a child.” As the heat built, my face started to dropsy, my speech became slurred. The very few people who tried to say hi to Linda she introduced to me; and got me trying very hard to be interesting and lively and instead I was slurring and un-understandable, spitting and hissing as my tongue was stuck to the right side of the mouth. Linda at several points had to wipe spittle or food off of my chin.

I will not forget my feelings amidst this group of people who were all about money and power and “up, up and up” and working for the government. I was not just the poor relation who arrived on someone else’s coattails but I feel deeply, like I felt no where else, from many of the people that if Linda has REALLY cared about me, she would not have brought me at all. I was not fit for ‘polite society’, I was not something…sorry, I mean someone who could not likely understand what was going on around her much less participate. That was my most humiliating moment.

If you don’t want to talk about what it is like biologically to be YOU, okay, but I have “bared all.” So if you will, I don’t care if you are able body and finding it takes you longer to pee and adjusting to that. Or if you are hitting menopause in a society where women in the workplace should be consistent and stable at all times (or not be there at all!). Do you have to take insulin, and have to sneak off for that, or other medication? Does your irritable bowel mean you know exactly how many minutes every toilet is from your house (I went through that!)? I guess what I am saying is that you don’t need to feel alone or ashamed, because I am learning NOT to be ashamed, because I AM disabled, and that doesn’t just mean using a wheelchair, it means a whole lot more. And here, if you want to talk, I don’t judge (hey, I am the one packing ANTICIPATING for peeing myself, to know I will drool on myself, I have hair on my face – but I WILL kill it, so either you can, like everyone else, turn away and pretend I never spoke at all or…share?).

Saturday, July 19, 2008

In local news….

Cheryl helped me do stickers for some of the new people wanting postcards before we got ready to take our boat trip to a foreign land (with MANY tattoo palours!), Port Angeles, USA. The customs officer asked, “Are you taking any medication?”

I think about the bottle full of opiates and other drugs and start stuttering about my oxygen and before I can finish they wave me through. Dude, I have a med-alert bracelet, what do you think?

The purser helps me and I show him my mega bruised arm full of needle marks and say, “So what do you think, ADDICT, or someone with a lot of medical treatment?”

“What?!” he says.

Cheryl goes, “I can’t take you anywhere.”

Later I have a seizure which stops my breathing and Cheryl hurts her back to help me sit up, or LIFT me up so I can breath. Since I can’t talk, I practice American Sign Language with Cheryl. We are doing okay but of course, the people around us think that we are deaf, or I am. So I am showing Cheryl how to do ‘slang’ ASL and we are doing this dialogue in slang:

“Hey, Cheryl, ya want a beer from the fridge?”

“Yeah, okay!”

When one of the women watching whispers, “It’s such a beautiful language.”

I sleep, I get frostbite in four fingers (it is not freezing, it is just I have crap circulation), I use two of my oxygen bottles (need that concentrators) and manage to buy some more stickers for my postcards online WHILE away from home (I have an addiction! Prepare the intervention!). And I write up the nine postcards so they are all ready to go.

Tomorrow is the BBQ and then an early boat back to make sure I don’t have to be hospitalized. Maggie was, “How do you have frostbite!” I don’t know, in case you haven’t noticed, I don’t control the fingers going black, I don’t control them going white with loss of feeling either.

Linda saw a grey whale coming over. I saw a break of something, but seal, dolphin or whale, I couldn’t say.

Have a great weekend. I actually am NOT nauseous right now, so this is a good hour. Savour the good hours!

Friday, July 18, 2008

The Doctor is in, but I am OUT

I need to keep this short so the good news is that the MRI is a dud. They looked at T-1 to T4 and after the chief radiologist came down and they did it again they decided that the signal increase in that section was no longer evident. There were however significant “artifacts” which have no explanation. It turns out that no more of the spine or head was MRI’d and that is NOT why I found out today that I am going to the Rheumatologist. Though the doctor has intervened and got my appointment moved up from December to September. Also, he is speaking individually with the pain specialist so I can get in there quickly as well.

So what is the deal? That is what we asked ourselves while we were in his office. The lab results were back, the neurology report was read again and I explained, in detail how in SCIENCE there are baselines and objective reasoning. And proof! And if we look at nerve destruction as starting at 0, minimum at 1, medium at 3 (mild to medium as 2), severe as 5 and non-function at 6/7. Then to go in one year from 0 to 4/5 and write that in a letter. To write that I have autonomic failure (believed peripheral), and that I have also an auto-immune disease which MIGHT be the cause of one or two of these problems should be accompanied by a list of diseases which can produce such results. Since as a scientist I found it hard to believe, which this neurologist states that I am now at level 4/5 nerve destruction but non-degenerative. That I am supposed to believe that THE VERY DAY I was tested, whatever was destroying my nerves (still unknown) decided to stop.

The Doctor couldn’t understand that. So I said to him, “This woman, told me that she did a Nerve Conduction Test, a scientific test, which showed that I will NEVER walk again unaided, never eat food normally, never write normally again. And without any EVIDENCE says I shouldn’t worry this happened in a year, that it won’t continue and she will see me maybe in six months. Would YOU worry doctor? Would you?”

He didn’t know what to say except that she was doing her “due diligence” in ordering tests to rule out possible causes. He turned and said, “Like, you tested negative for Syphilis.”

I was ALMOST speechless, “Syphilis! Syphilis? This doctor says I have a NON-degenerative disease and tests me for SYPHILIS! (Syphilis until recent medicines degenerated the brain to death).”

It turns out that not only are the four indicators from the LAST bloodwork on Anemia are worse. There is even a little graph over time. I am now at the “Critical Level” for all women (that means I would be anemic if I was 5’3”, instead of over 6’3”). That level just isn’t for my hemoglobin (the pigment that makes blood red and helps it carry oxygen), and hematocrit levels (how many red blood cells in a given area) but also two other critical indicators. But the doctor does nothing. I ask about the B-12 and it has shot up, not in the 160 but up at 250+; the folic acid is fine, the iron is fine.

He asks very specific questions to Cheryl about the seizures. But doesn’t seem to notice that a) I am about to pass out and b) I am about to burst into tears due to frustration. Cheryl and Linda both independently say this Doctor seems a little dense in terms of observation. Even with Cheryl he was only interested in certain phrases, then once he found I didn’t pee myself….not interested. Said that they eye pointing down while the other stared out sounds like the nerves on one part of the face were paralyzed. But that is it, no follow up. Later that day, I am contacted by the duty nurse for VIHA; E. the nurse who said, “Why should I care?” about the seizures wasn’t there, this is the EVENING nurse. She is very concerned. She is changing my care plan. She wants me to put up a protocol chart by my computer on how to keep airway clear and other common practice for workers while she will forward the report to my GP and get my care workers to have further information and maybe training. The surreal nature of the difference between two nurses is striking. This nurse, K., wants to know why my doctor didn’t give me Dilantin to help stop the 3 grand mals and 5-10 other seizures I have a week. I told her I would ask him that, but maybe she could suggest it too. (My GP actually prescribe me something….forbid!).

My GP seems frustrated because all I keep bringing him are big problems, these seizures now, plus an autoimmune disease, plus autonomic failure, plus nerve damage/failure, AND pain. But for some reason he believes the pain and is talking to the guy to get the first available placement. Why? Linda and I can’t figure it out, we think maybe this way he doesn’t have to be responsible. He is VERY up on going to an independent neurologist in the states. By why the hurry? He is acting like, since there is no CONCRETE evidence, why shouldn’t I just get up and walk (except the othastatic hypotention), and stop taking oxygen and all pain meds. Except I did just that a couple days before and my 5 minutes of, “Hey look I’m better” cost me 4-5 hours of seizures, pain, nausea, and a day of fatigue.

I tell Cheryl a few hours after when I can only feel like killing myself that I feel stuck between two worlds; both which I cannot live in. The last time I lived mentally in the world of doctors, seeing what they want, and only looking at me 20 minutes every month or two, telling Linda that seeing my arm blue and fingers black isn’t “objective evidence”. The last time I stopped all my meds and Linda had and my night care worker had to hold me down with a towel in my mouth that evening while I screamed and screamed in pain. My GP, says he can’t see any change in my condition when EVERYONE around me, even people who just look at pictures on my blog can SEE a change, even while I am still trying to exercise three or four days a week. The medical establishment is ALMOST ready to accept that something might be wrong, and the results warrant further investigation. I can’t live there but I have no desire to run back to the “Oh great, I’m degenerating and dying, and I WILL die, because even going to the hospital and getting heart and seizure treatment there isn’t replicated at the GP or specialist level (the hospital is ignored, or worse insulted as “not ACTUALLY specialists). Having it documented in hospital means nothing if you can’t Grand Mal AND pee yourself for the GP in that 10 minutes. How do I fight that? How do I fight the GP who GOT the hospital report on partial stroke and seizures and CANCELLED a head MRI? They have a whole spine and head and like an architect who decides to look at one pillar while half the building is collapsing goes, “I don’t see anything here!”

Anyway, that is all mute because we now know WHY I am seeing the pain specialist and Rheumatologist so quickly. This is what the Canadian Blood Service says about Hemoglobin and anemia: it takes 56 days to renew the full blood. This is in case of trauma and severe blood loss, but in that case my levels would be going up…not down. Likely causes: low B-12 (fine), low iron (fine), low folic acid (fine). Less fun causes: internal bleeding (none of that level, Cheryl has been checking the last few months), and celiac disease (tested in this last batch – came back negative, again), extra heavy periods (nope). “Serious medical problems are more likely in individuals with lower hemoglobin levels.”

Okay, now we get to the fun stuff (Mednet): reaction from Chemotherapy (nope), reaction from prolonged exposure to radiation (nope), trauma (nope). Bleeding colon cancer (nope). The two which are left as ‘common’ with are consistent with the hemocrit levels are some form of bone marrow cancer and the dying of the kidneys.

By the time I got to here, I was feeling a gut punch and thinking, “Wow, I REALLY wish I had come back positive for Celiac disease.” Linda called and I read her what I had found. She faxed the lab to get all the results. Maybe tomorrow. You may ask, Why didn’t I look up this stuff when I was first anemic? I didn’t want to know. I was tired. But I couldn’t understand my GP GRAPHING my decline in each area of anemia but not treating me. WHY? DOCTORS TREAT PEOPLE, WHY ISN’T HE TREATING ME!

Because if he can’t give me iron, or B-12 or any other tests, there isn’t a “magic pill” which will make the anemia go away. Yeah, the thyroid is dying, or dead, and maybe the adrenal gland. And I have an auto-immune disease, vascular degeneration control, autonomic failure, TIA’s, seizures, and strokes, my intestines don’t work, nor my BP, or oxygen conversion. We are trying to buy a machine for $5000 to keep blood with oxygen going to my HEAD (blue fingers okay as long as the LIPS turn back to pink). And now, he has this wonderful graph evidence that something is horridly fucked up in me; cancer, dying kidneys, something affecting my bone marrow AND cell production or kidney secretion, or all three or who knows. So he is getting me pain meds and getting me a specialist in less than two months, in a city that only has two. That’s what he can do. Last time they checked my white blood cells were okay. I dunno when that was. Should I be hoping a wack disease comes up positive than we keep going further into this horrid body jungle of dying WHILE alive?

I guess I can see why my GP is overwhelmed. What IS working on me? I think my pancreas is still okay! And hey, that T-1 to T-4 is sort of clear except for a number of artifacts. Cheryl, cheerful Cheryl thinks that might be lesions. I think if they did a full brain and spine MRI they would have found a whole worm farm. But do I have six months to wait for another referral?

Anyway, maybe I will be lucky and start vomiting blood tomorrow and not worry about this anymore?! (see, that would actually explain this type of anemia, if I did that regualarly!). Oh, and the kicker, apparently, my levels have put me too unstable to recover from surgery. Not that they are offering yet.

Um, the good news is…I have friends, I have today. What will be worse; this period of unknowing or the tests and the news ahead? I am off for a BBQ. I very wish I had some super news to give. Honestly, I though anemia was studying too much, or me being 16 and a pouty goth all over again. I just didn’t know why he didn’t give me iron pills or whatever.

Give me a day or so to get used to it. I kind of thought that what I had already was, well, enough.