Samstag, 20. Dezember 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!

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