Saturday, December 20, 2008

Oxygen concentrator, I try to go begging (again!), and Seattle!

I have recovered from my begging outing. Indeed this morning while in bed I said to Linda, “How about we go to Starbucks today for an apple cider?”

“Sounds great!” she said. Starbucks is right next to where I did my begging.

“Okay,” I said, “But when we get there, you go ahead, I have something to do and then will meet you inside.”

The light goes on in Linda’s head. “Oh no! Not a chance!” She said. Drat!

It turns out it is REALLY cold and that it is REALLY snowing, for instance it is –20, which is COLD for Victoria. Lene told me even as a person from Toronto (the ice age city) she doesn’t go out in –20. Here is a picture by Liliana Sanches (yes I wrote and asked permission), which shows that while snow is pretty, it is also something you don’t want certain parts exposed to. Pretty but zowie - defrosting that....

The exceptional news is that Blue Cross has approved the oxygen concentrator and the local supplier already has the fax of the approval and has ordered it and expects it here within a few days. It is the same model as I took to Japan and will fit in my backpack so I can use it while rolling. Linda had been playing telephone tag and I turned on the phone and there was Blue Cross with the message that yes, it had been approved and they ‘preferred we used the Canadian supplier.' The Canadian supplier called, the guy who gave the quote was on vacation but the tech guy was getting the stuff done. By the afternoon, there was a call to say the order was placed and the concentrator is coming from the US. Linda talks about it here.

We are fundraising now for the rest of the costs of going to the clinic and costs related to that (like hotel, etc) as I am now physically able to go! I really never thought this day would come, that I would be able to leave my home and be free to travel again, without the constant fear of my body suddenly de-compensating or blue lips and fingers (Well except now that 'instant frostbite' issue but we are working on that). Thank you for everyone who has helped, I really don’t know what to say. I feel in many ways that I have failed so many people in expressing my gratitude in the emotional, physical and financial ways people have reached out to someone they will never met. I have been sent hoodies and corsets, books and talking books, have been sent cookies and pumpkin loaf and the best foods from people's states. I have been sent love in dozens of forms. I am a lucky person to have met so many kind and generous people.

Now still, if you want the new 'in' look then get a sky and cloud blue colored Girl’s Gotta Fly bracelet ($2 donation. Warning: does not actually allow you to fly! However does on occasion give you the kick-ass attitude of EFM!), we mail them! Please read here. Or if you would like a copy of Zed signed by a limited edition author who will soon be permanently out of print, please buy a book and get a signiture and an odd and curiously obscene inscription which will be sent to you or the person or country of your choice. Yummy. Please see here for details. Yes we have the copies and yes, the obscene inscription may be optional (or extra depending on how detailed you want it!).

Ironically, while I was begging, I was next to the newsstand of Monday Magazine, which has a new issue in which the feature headline was Accessibility. Turns out the guy I talked to about the nails in front of my door told me that they hadn’t covered the story enough and apologized. I thought nothing of it. He did, and got a front page full spread four pages story (with an interview of me and a picture of me boxing - woo!). Here is the article. I would be curious to hear Lisa Moon’s comments on our life here in Accessible Paradise (‘as good, maybe better than most cities’ – well we are the worst province for accessible equipment, and as the journalist points out, since ALL the people interviewed who were disabled moved here FROM other cities for better accessibility saying we are ‘as good’ is pretty crap. Woo hoo, we’re dead last!).

I did have many physical effects left over from yesterday and some psychological ones. I felt in a lot of ways that I had let everyone down. My readers (on the other hand, doing crazy thing and then taking pictures is what my readers like!), David, Linda, and so many people who are going through a rough time. I am trying to do postcards today and I don’t have the capabilities to do the number I would like, there are more people out there who need postcards than I can physically do. I have been having problems with cognitive and micro seizures all day and it is Linda who has been trying to give me a “Lighten up” attitude. That I am not a big fat failure. Ironically, she is taller than me now, as she is in this picture. I had gone into that mind set where all I could see the stack of work I had not done, and the work I had done which had produced no immediate results. She took me away from that.

I am going to go back to work and do what I can as much as I can. Sometimes, like this evening during a prolonged respiratory difficulty (stopped breathing, got started, stopped, etc) I felt that I had done all I could, that it was time to go. I wanted to go. Linda did not want that. Linda has learned from Beth to fight for what she wants. So, what was I thinkin? I mean, there is so much left to see, with Linda beside me. I need to focus on how, in just a short time my concentrator will provide me with that better quality of life: Yes, you know it, Seattle and Victoria Secret after Xmas sale! Woo hoo! Oh yeah, panty shots a coming! Panty shots a coming!

19 comments:

Neil said...

First thought, as soon as the page loaded, was, "That bloody well be not be a portrait of Beth begging again!" Nice drawing, looks like she's skinnier than my favourite blogger, and quite callipygian. But not s bright as Beth in the snow, except for the rosy glow on her cheeks.

As for the concentrator, all I ask in thanks is that you don't go out and freeze to death.

As for the article that starts with you, it's wrong in one place where Joane Neubauer says, in part, "It could be you."

Nope. Wrong, Joanne. It WILL be you. Or rather, us. It has been me; I've had to use crutches several times, and I've had to walk for groceries through deep snow with a cast on a broken ankle and a plastic bag over my bare toes.

Beth, Beth, Beth; listen to me: YOU HAVE NOT LET ME DOWN! you did what you thought was the right thing to do yesterday. But please don't repeat it in this weather; it's just too cold to stay outdoors.

Linda is right. Listen to Linda. And yes, there IS so much to see, with her standing taller than you and your eyes at the same height at, um, those which you love as much as a sunset, and admire and gaze at. Show her, Linda! Distract that girl from the outdoors!!

Hot chocolate, love and hugs all 'round,
Neil

Lene Andersen said...

Woo! on the concentrator! I'm beginning to have a bit of hope that this week, maybe the Heap o' Crap that's been blanketing everything is slowly turning into a something a little better. And panty shots are a damn good reason to live, so stick around!

All you can do is your best. It's OK to stop for a day because you've reached the end of your resources and then work again tomorrow. You best is enough (and don't give me that thing about how you think you're omnipotent - even god rested on the 7th day. Rested. If the word 'rest' seems unfamiliar, let me remind you: sittting or lying stioll, doing nothing. Or weatching movies with Linda. That's rest ;)).

And that Liliana Sanches picture? Wow. Just... wow.

Laura said...

Beth,
Only you can blog the way you do. Another fine post. Save some of the energy that you beg with for Seattle! Love you Sis!
Laura

yanub said...

That first picture is beautiful, but I look at it and she her thinking, "It's my wedding day and the seamstress forgot to put a goddamn zipper on the dress. How does anyone forget a zipper? And I forgot my panties. Why don't I just end it all now? Jump in that icy lake and avoid all the embarrassment."

So great that Monday Magazine has published an in-depth article! I can hardly wait to read it; I hope readers in Victoria will be shocked out of their complacency. But I bet there will be a lot of irate people, angry at you, angry at the author, angry at the publication, for having the audacity to tell them Victorian's self-congratulations at being such a forward and progressive city should maybe be held off. Pay those people no mind, OK? They are just working out their disappointment in having to do more than play charades.

You, dear Beth, are very welcome. I have something else for you, which will get mailed next week. Now that I found a post office store so that I don't have to climb the steps of my local inaccessible post office, I can actually get things mailed off more regularly. (Everyone in the US, write a letter to the postmaster general. Ask him why it's OK for disabled people who live in small towns to be denied access to the post office. Our local post carriers get all the grief, but they can't do anything to change the policy.)

Oh, and you and I can be great big failures together. I really must work on that whole perspective thing some more, and you do, too. Of course, it is possible to go out of balance in the other direction, to not feel shame at all. I wonder what it must be like to go through life making actual substantial blunders that ruin lives and nations, instead of routine simple human frailties, and not lose any sleep over it.

wendryn said...

I'm so glad to hear this finally came through! Woohoo! :D

So glad to hear Seattle's going to be reality, too.

Neil said...

Hi again:

About the picture of the snw girl: what medium is it, please? As impractical as the dress is (me Beloved says it's unzipped), the picture is very well executed. The snow, the water, and all those ruffles around the bottom of the dress would not be easy for most artists.

Lisa Moon said...

Yay on the oxygen concentrator!! (pumps fist in air like sports fan)

That's AWESOME news!

I'd be happy to give you a manicure any time; just let me know. :)

What's next... oh, right! The picture of the girl, with the bum, by the lake! Hello, bum! Yanub, just about fell of my chair reading your take on it, LOL! Guess it depends on your perspective, how you view that picture, eh?

So, yeah, about that Monday Mag article. Glad to hear they realized their covereage was woefully inadequate, but rather dismayed to say the least that they think our fair city - as lovely as it is - is 'accessible'.

PLEASE. All of my favourite restaurants are downtown and just about every one is inaccessible in one way or the other. Ferris'? Tiny little entry-way, crowded tables. ReBar? Several stairs into the eating area, just inside the doors. Mo:Lé? No stairs, but again with the crowded thing (all those hipsters in the way, too ;) ). Café Mexico? Well, you *can* get in, but there are only a few tables that don't have stairs to get to them and most of those are bar height tables! NOT fun, even for me who is able to hobble on in - way too painful to sit.

What else? Well, most of the also-fun downtown stores are also too freakin' small to access, largely due to many buildings being heritage buildings which have not been renovated to make them accessible. After all, in the 'olden days' us crippled types would never be seen, would we, let alone be out at a store or something!

Ohh, but it's not just stores and restaurants, no sirree. How about the Victoria Regional Transit System, a part of BC Transit? Well, I've griped along with Beth about the many times when able-bodied folks of all ages were taking up the seats at the front of the buses clearly reserved for those with disabilities and seniors. Do they move when you come on, say, using a cane? 8 or 9 times out of 10, I've found the answer to be NO.

Do the drivers of those same buses, upon seeing someone using a cane, think to use the 'kneel' function of their bus to let said passenger with cane on? Nope! Sometimes they do, sometimes I have to ask. I guess they figure 'she can walk, she can climb up this 18" high step into the bus, no problem!"

Also, I can't usually get out the rear doors of the buses as they may not be close enough to the curb, or have a small enough step down for me to manage. Therefore, I must fight my way like a salmon upstream, to exit via the front doors. SOMEtimes, the driver will ask the awaiting passengers to wait while I exit; more often, I am squashed up against the grab bars, unable to move, while impatient ABs push by my, gleefully unaware that the slightest touch on my left leg can cause hours upon hours of excruciating pain.

There are more things, of course, like the many tourist attractions which are not necessarily accessible and so on, but it's shocking and appaling that Victoria, long referred to as filled with 'the newly wed and the nearly dead' (no, not really very kind, is it?) for it's very high population of seniors, many who moved here, eager to escape the harsher climes of just about every other place in Canada.

Perhaps we just sound like complainers, but when you're limited to shopping malls and (maybe) movie theatres for your 'gimped person outing days', then you'd be pretty angry, too!

Sorry to hog your comments, Beth! I think I need to have a better read through (only have gotten a glance through, so far) of that Monday article as I have some checking in to do with them myself!

PS YES, it's WAY too freakin' cold to be outside, my dear! The bitter cold will be worse tonight with forecasted wind and snow warnings, so please DO stay in with Linda and Cheryl and perhaps have a nice pyjama party to write to us about?

Wishing you the speediest delivery of your O. Conc. machine!

Hugs,

Lisa

Abi said...

Yeah - here in the UK I reckon that 0 is a bit nippy, so I really wouldn't fancy -20.

I am excited that you finally have the go-ahead on the oxygen concentrator, also. I really hope that Seattle makes things a little better.

At the moment I am sitting in the front room of my parents' house and my sister and boyfriend, and my boyfriend are trying to see my baby sister's moody face. It is very annoying and I can't concentrate, so I'd better go now :-S

SharonMV said...

Dear Beth - I'm so glad the concentrator is coming!!! You haven't let people down, on the contrary you have lifted many up! My heart is learning to fly again. Thank you for staying & much gratitude to Linda for convincing you.

I sent you a small package on Mon. You may have it by now, if not it will be there soon.

Love, Sharon

Raccoon said...

nice article. Were only three or four people interviewed, do you know?

The first picture... both my first and second contemplations of it lead me to believe that she is in the process of disrobing so that she can go swimming. Didn't you see that?

cheryl g said...

I am glad you have put off the begging. It is too cold and you need all your fingers. I really think we can find other ways to help the kittens.

That is the most amazing news about the oxygen concentrator! Best of all is the freedom this gives you. Now we just need the weather to warm up and the snow to melt.

I have to differ with you. You have not let everyone down. You are not a failure at all. I think you are being overly critical of yourself. You have touched many people and made a difference in many lives. I think as time goes on you will see the ripple effect that your efforts have made.

I am with Linda. You need to stay here a while longer. We have shopping to do, postcards to send, conversations to have. Please, stay.

rachelcreative said...

So very pleased about the concentrator and the freedom and flexibility it offers you and Linda. Seems you both worked so hard to get it they should pay YOU to use it ;o)

You haven't let me down.

That's a very nice naked bottom and a lovely picture but they missed the goosebumps!

The article is great. You make some good points - lets hope people around there start to think about it more!

Anonymous said...

Hooray for a new oxygen concentrator! It's about time!

I agree with Linda. No more outdoor begging, please, we want you to stick around with as little frostbite as possible!

(Completely off-topic, but if my giant picture-filled emails cause problems with your email account or don't come through for some reason, I'm really really sorry and I'll try to send the same pictures to you by postal mail.)

~yakiikaonastick

JaneB said...

You AREN'T a failure - and it will be very hard for you to fail us, your readers - just keep telling the story as and when you can. Delighted to hear about the concentrator - some good news at last!

Elizabeth McClung said...

Hi, sorry I have been so quiet, I have been postcarding like crazy. And just got use of one of my arms back. It is still snowing here so begging is on hold.

Neil: Um, well since I not going to poise naked in the snow, you can compare all you like.

Um, yes, I think they quoted that part where I said that everyone will need it even temporarily, I think the journalist did a good job contrasting the views of the people with disabilities with those in charge. In the comments one person said that in Alberta you can get on disability with $100,000 in assets (like...a house!). Which means I could be on disability even as Linda's dependent. He also pointed out that the government has reduced in the last three years the Xmas bonus they have given out. Okay, that is low - reduce the Xmas bonus from $40 to $35 while they give themselves a six figure raise? "Grinch!"

Lene: You know me, I want to take dem panty shots! I want ones with ivy pattern (that is in this year), and hmmm, something like the red satin with bows that you would NEVER get unless you were taking it off for sex in 20 minutes. Oops, there goes the PG rating again.

I did postcards for 36 hours straight and had some seizures, I slept 5 hours - is that rest? Am I getting better at it? I'm sorry, it is just, those people are waiting for the postcard, how can I let them down?

Laura: thanks. I can't really imagine seattle, much less in the snow - all I think of is inclines and how I only have one pair of gloves for winter!

Yanub: I like your story, it is both plausable and something I would think, so it made me laugh.

As for the article, so far the comments have been very enlightening to ME, seeing some of the issues I didn't even know about and were falling down (like Xmas bonus for people on disability getting cut or how in 20 years, the minimal increase in amount given versus rent and other costs - and how most now rely on St. Vincent for Xmas food. - ouch!)

Thank you, I hope you got a postal thing from me, and your boss. That is irritating and frustrating - yes, live in a town and have an inaccessible post office - for me mine is inaccessible becuase it is down a steep hill covered in ice - so no go, which is why sending to Port Angeles is actually the best way (I can REACH that post office easier than the one a mile away!).

I think when you go through life making blunders and never feeling remorse, you either become promoted to high levels of management or become a politician - I can't remember the name, arg, a famous person who designed the "lets bomb Vietnam until they quit" idea - starts with an M - they say he killed millions, but all with the best of intentions as leader of the world bank which demanded the green revolution in the third world which washed away the topsoil and created famine and debt and starvation. Even he admitted he might be one of the top killers in history, "But I was trying to do the right thing." Er- so he was promoted to another position - in charge of more things.

WEndryn: we can now make an official office booking and this trip is going to see how many days it takes to spend a day in Seattle in terms of movement and such. On this side Blue cross will cover a private ambulance but not on the US side. But yes, now I can breath, which is good. Problem is my heart pill usage is gone up 20% more this week. So will need to do the "ug" and stop by the hospital and waste a Day in ER finding out what to do.

Neil: Photo? No idea, I found the picture, I emailed the artist. You can get a picture of it yourself on Deviant Art I think.

Drake said...

YAY! YAY! YAY! I am so happy about the concentrator! * Hugs you untill you turn blue * :D. I will HAVE to check in on my Finances...hmmm * Stares at Credit card *

Trying to be sneaky aye? Good thing Linda saw through the ruse ;D.

I am trying to get a hold of a good quality wav to mp3 converter, so I can send you some of my old songs ...they are all in the 20 mb region as I record them at the highest possible quality (although I was still a bit inept at that point, so they don't all sound very clean)... I hope you would like them tho, as I would love to dedicate the one to you if that's o.k. ... and if you like it, that is...

Ugh...had a "brilliant" weekend, with an ignoramis of a doctor in the after-hours service of the hospital...but more about that a little later on my blog.

* LOADS OF LOVE AND HUGS *

(And a wry smile to Linda for seeing through your scheme)

Dawn Allenbach said...

Panty shots!

Sorry I haven't commented all weekend, but I was preoccupied with meeting my five week old "nephew," trying not to hurt my diss advisor through the phone, trying to get a BIPAP machine, twisting my ankle and knee (both still hurt), last minute Christmas shopping, spending time with my seven year old "niece," having a crying episode at my parents' church because a Christmas song being played on the piano forcibly reminded me of my brother, freezing (wind chills yesterday at -6F/-21C), and eating chili.

If I send you my copy of Zed I bought last year, will you sign it for me?

Maggie said...

Does that girl know her ass is showing? I bet it's awful cold!
I'm glad things seem to be working with Blue Cross and the trip to Seattle. I'm looking forward (if all aligns to a trip for after Christmas sales in Seattle as well!).

Beth, you are not a failure, you have not let anyone down. You have a heart as big as all out doors, you are a good person, you make me laugh, you reflect pieces of me. I love you.

Maggie

justin said...

Congrats on the new Oxygen Concentrator ! My grandpa was not so lucky, the blue cross of New Mexico fought him every step of the way. He ended up having to rent one before he died. I wish there was something that can be done to repair this messed up health care system we have :(