Big worry is that after being faxed TWICE the Blue Cross letter for my oxygen concentrator which needs the EXACT wording from my doctor, my GP can't seem to find the faxes, so can’t do the letter. Linda is dropping off the original tomorrow. So is he on board but can’t find a fax or….
Plus tomorrow I find out what is so horrid that is on my MRI in order to kick everyone into action. I figured it probably showed up in one of the Alien v. Predator series, so I am prego with some alien beastie in my spine. It explains the nausea, the loss of function and my new ability to spit acid across the room.
So now for a little distraction, back to someplace I felt kind of warm and secure….that’s right, the Hello Kitty Bondage Room at the Love Hotel. Unrelated to that, I have found, by the way, and ordered, some packing tape with goth loli Hello Kitty, oh, I am in so much heaven I could die going “Sqeeee!”
I only managed to buy ONE roll before they ran out (so if you want to gift me *cough*MORE*cough*).
Back in S&M Hello Kitty Bondage Land this woman and her man friend went to the Bondage Room and took MANY more pictures (I notice the guy is smart enough NOT to be in them). And I have to say, this Hello Kitty VIBRATOR VENDING MACHINE is NOT “Sqeee!” And there just went every single alarm for the people who read this at work, sorry, that picture alone I think breaks a few different Homeland Security Directives.
What I don’t get is, okay, you want a picture of yourself in a Hello Kitty Bondage Room in a Love Hotel. Fine. But then, WHY do you make it a PUBLIC album on flickr? Seriously, is this what you want grandma to see? But hey, I guess she does as she put up her flickr pics (IN BONDAGE!) of herself at the S&M Bondage Hello Kitty Room. I have say, as open as I am, this is NOT how I want someone approaching me on the street, “Hey, aren’t you that woman in the handcuffs in the S&M Hello Kitty Room?” Which now I would DO, if I ever saw this woman in real life. I have to say, the whole, “Aren’t you Elizabeth from Screw Bronze?” has a much nicer ring, though I admit my first comment is usually, “Oh, I hope you don’t swear more now than you did before.”
On a last note since SO many readers seemed obsessed with the toilets while we were in Japan, I found a pic of the toilet in the Hello Kitty S&M room. Nice, cute, disturbing. Most disturbing because I HAVE hello kitty stickers of her in her plane like that. I have been sending out these stickers to people on postcards. If you get said sticker, please think of the kind and cute Hello Kitty when you look at it, not handcuffs, vending machines (shudder) and chains. Thanks!
And since I was in the Hello Kitty mood (and when am I not), I dropped by Hello Kitty Hell (the husband who hates Hello Kitty and the wife who loves her) and some reader had baked a Hello Kitty Zombie for a birthday. How incredibly cool is that. Nothing is better than Hello Kitty than a goth loli Hello Kitty with a taste for brains (hey, after yesterday, I’m officially a zombie, so we have things in common!).
Also are you really telling me you don’t want a Hello Kitty Zombie Head to eat for your birthday? I would!
Side trip over!
I lost a bit of time tonight because I (I was about to finish this sentence when I had two seizures and lost ANOTHER 100 minutes) had a seizure earlier and Linda found me on the floor, and I had lost over an hour. I would say it is SO boring except for the pain, the drooling and the choking. BUT I got a new trick: one eye staring straight ahead and one disappearing so far DOWN that only the top rim of black can be seen when the lids are opened (this according to Linda).
Also I am so busy doing these tests and running around that I don’t have time emotionally to process how I feel. After having done a year where the specialists left me with the “we’re not liable” and “see you once you’re dead” song; how do I feel about emotionally investing time and energy and hope in a bunch more doctors? And who is going to pick up the pieces if they, after a couple months of three or four tests a week, leave me exhausted with the exact same diagnostic? Not a pretty picture. Right now, it is easy a little to dance with hope, which is why I keep using the word “remission.” I hope for “remission” not a cure; because show me a remission and we can double my expected life span. At the same time, I am still losing things, still grieving, only now with all the anxiety of upcoming tests and the expectation or not of results.
See when every meeting can tell you that a) the results show you are fucked and there is nothing they can do; b) they found something they think they can treat but it isn’t the main thing or c) they think they know what it is and X university is have some success with Y – that is a lot of emotion for a 20-40 minute meeting.
Today I wrote a fluff piece for the BBC Ouch! after I made a link to a new blog at EFM Postcard Project.blogspot.com. That way I can update there every time I post out new cards and can direct any new readers there with the nifty new link on the right below my profile. At the blog it explains the whole process and they can get on the postcard train.
I also made a blog for my Japan Dai-Boken Trip and want to transfer all the posts and pictures to that blog so they can be read top down in sequential order (now it is in reverse, along with some after trip posts). That way the whole record of Wheelchair adventure in Japan 08 is there for anyone else planning a trip or new readers of the blog. I hope to finish that over this next week. That was the work I did today. Right now, I have to get up in a few hours for the doctor’s appointment so I have to run and am out of time.
Still, just have to say, a) Buy me Goth loli Hello Kitty Tape and b) That Hello Kitty Dildo vending machine…..wrong, wrong, wrong! And I'm sorry your boss caught you with that one your screen. Yes, I am bad. I deserved to be punished! I deserve to be bought more Hello Kitty stuff!