Thursday, July 17, 2008

Hello Kitty Zombie, goth loli and MORE S&M plus my seizures

This blog today is very conflicted. On the one hand, a few, tiny, good things, on the other hand lots of conflicting and anxiety causing things and on the third hand (Welcome to the Addam’s family! Thank you Thing!) some down right bad stuff, which I have sublimated into Hello Kitty.

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!

17 comments:

SharonMV said...

Good Luck at the doctor. Hope it's not aliens. I know how you feel about going through that whole specialist thing again. But it's your life - use them to help you. I hope they will. If you want to talk about medical stuff, the doctor roller coaster or anything else. I'm here. Send me an e-mail.

Will be thinking of you. Will send all my dealing with doctors & tests powers to you for the day. This is a marathon I've competed in for years.

Sharon

cheryl g said...

That vending machine is so wrong. Instead of putting cute Hello Kitty in that room they need to do dominatrix Hello Kitty.

I love the zombie Hello Kitty cake!

I am fervently hoping the mystery MRI points at something they can treat to improve your quality of life and give you more time.

Lene Andersen said...

"my new ability to spit acid across the room."

Thanks for starting my day with a laugh.

Thinking of you and sending hopeful vibes all day.

em said...

Oh no, that Hello Kitty Zombie is WRONG. Way too green. I like my zombies more ashen.

Thanks for coming out with the hope stuff. I have been hoping pretty hard down here in soCal.

Anna said...

I hope that your MRI was, well, not bad.(Know I shouldn't pray, can't help doing it.)

It is true your symptoms match Ripleys in movie number three.......

The Hello Kitty things make me scared....:)

Victor Kellar said...

Argghh you an evil, evil, woman .. how can I maintain my hetero-carries-a-knife-at-all-times bad boy image when I am being sucked into the Hello Kitty vortex? Are there Hello Kitty ninja? That would placate me

We got our postcards today, thank you so much, I appreciate the effort to put on some sword stickers. Collette will likely drop you a line regarding her card

Good luck with the rest of the testing

JaneB said...

Hope things carry on being bearable with Drs and pointy things and trying not to be TOO hopeful... with any luck at least your GP can get you a proper pain specialist - or is that who stole the fax machine??

A colleague from China kept saying he'd sent me a fax, nothing was coming through, then I went through the recycling trash by the machine and found some blank sheets with teeny tiny origination codes on... he'd been faxing everything upside down... his email response was 'fax machine must be turning the sheets over on the way, it's European problem'. Er... in the end his grad studnet managed to fax the papers fine!

Dawn Allenbach said...

Fortunately, the Hello Kitty Dildo Dispenser is not GLARINGLY obvious in the picture you posted, so someone just happening by wouldn't really notice at a glance. However, you did type "dildo" and "sex toy" in the post, so company sirens are going crazy. *giggle*

Zombie Hello Kitty birthday cake -- I do have a birthday coming up!

I'm not really sure what I should hope for you with the MRI visit. Remission definitely. Proper treatment for sure.

Cheryl -- Dominatrix Hello Kitty. I have friends who would totally dig that. Must do search.

Defying gravity said...

Hi

The postcard came today! Thanks so much for sending it - it was great to come home and find it. (Postmarked 2 July, so only took 15 days, sigh...)

All the best

yanub said...

Bah! I hate having to wait on test results. Even if it is serious, I would much rather I be given some indication of what the problem is over the phone than to have to wait. And if I am sent for further testing, because of the tests I just had, I always demand that I be told what they are trying to rule in or out. I'd wear a hole in my stomach the size of the Grand Canyon, being held in suspense like that. So, I hope you get your questions answered today. If he doesn't, well, don't let him. OK? He owes you big time.

I like the idea of zombie Hello! Kitty, whether as goth loli or school girl or dominatrix. It's the unspeaking, undying fad that shambles from country to country, devouring all brains. But cute.

Dang, but you are a blogging fiend. I am in awe.

Laura said...

Dearest Beth,

I too volunteer my medical knowledge for any explinations for you. You know that all you have to do is ask, and don't be shy or ashamed about asking.

It seems to me that conversion disorder has finally been taken off of the table. I wonder if this action has anything to do with the complaints that you filed? Anyway I am happy that a fire was lit under their butts and somebody is doing something for you. You know that you are in my prayers.

I think Cheryl has the right idea when it come to Dominatrix Hello Kitty. The Hello Kitty zombie cake is just too cute.

Laura

Perpetual Beginner said...

Hey, if it's aliens, then a simple extraction would improve things, right?

Best of luck with getting more out of all the tests and doctors than you have to put in.

I agree with em - the Hello Kitty Zombie is too green. Looks more like the Jolly Green Kitty then a proper zombie. I'm not touching the vending machine.

Raccoon said...

postcard! Happy postcard! Anime girls! (I got a postcard!)

"Ability to spit acid across the room;" I've never heard of projectile vomiting in quite the same way before.

Zombie Kitty -- Yum.

MRI results, specialists, things are looking up?

Shea said...

I know to never read your blog at work lol! That vending machine was kind of funny to me. I know for sure I will never again look at hello kitty the same.

Neil said...

The link you provide for the Hello Kitty room seems to feature a white guy with a Japanese wife; could that be the dude from Hello Kitty Hell? :)

Oh, I HOPE the MRI showed something treatable!

And we have watched the last Blood Ties episode in the set. Is there a second set out? Please tell me the series wasn't cancelled with both Henry and Mike walking out on her!!!

Hugs,
Neil

Elizabeth McClung said...

Neil: Way to not give the plot away

SharonMV: Not aliens, but I am in the twilight zone. I just don't have it in me right now to know which way is up.

Cheryl: I agree, if they can do a goth loli hello kitty then they can do one with a whip!

Lene: Always happy to oblige, the Zombie didn't do it for you.

EM: Do you really get to DECIDE what kind of zombie you want, "I like more grey, with blackened teeth" - maybe this is Radioactive Zombie Hello Kitty. Keep hoping.

Anna: Between the Exorcist, and Aliens, I can always find myself in films.

Victor: Actually on Hello Kitty Hell, on the bottom of the first page there is a bad boy hello kitty tattoo as Ninja Hello Kitty!

Glad you got the postcards, sorry about Collette's name, I told Linda later, "I think there is 2 L's).

Jane B: No, they just new staff who seem to lose paperwork a lot, while we were there they couldn't find several test things, or the MRI results.

Dawn: Cheryl had to translate that you were using an arcane language called "sarcasm" - Glad you feel free to read that at your work station.

I think we all have TOO many friends who would dig dominatrix hello kitty!

Defying Gravity: I'm glad you enjoyed it. Well, We will have to see if the post can do better next time (the action of intergovernmental agencies seem a wee out of my control).

Yanub: I too like straight talk and doctors telling you what they are thinking and yes it does produce anxiety and I want to know what is being ruled out. So yeah, with you there.

So true, does devour brains and then lets it's minion carry on the work of spreading it to others!

Laura: Really, because there is something about hemmeroids I have always wanted to know (joking!).

Actually it has, though my doctor used the word "Cuckoo!" instead, and said, yes, with the vast range of symptoms I have, that still has to enter into his mind, but it is not his primary thought. Then there was some statement about with the amount of health difficulties I have, that HAS to affect me somehow.....I was left unclear as what that might be, as all I have noticed is a) an dedication to blogging beyond the normal and b) An unhealthy obsession with postcards

Perpetual Beginner: well, he was amazed that I did THREE needles in one day, but I told him a deal was a deal. So he takes the needle phobia stuff seriously.

As for that, for the 200+ tests I have already done, I think I deserve a car or the GRAND PRIZE, when they told me some of the tests they had done for "exclusion" I went a little ape because of the non-sequitor nature of them and started shouting how hey, why not add some OTHER ones like TB and Gonnarrea and Clamedia and I think everything that came into my head. It was when he READ the letter from the neurologist that admitted that a) I have severe nerve damage in all my limbs but b) it isn't degenerative (becuase it took a year to damage my nerves but her "opinion" is that the unknown cause/ideology decided to STOP the exact same day she tested, again for unknown reasons. But she has me tested for....syphallis (sic) which is when I am SCREAMING, "Oh, DOCTOR, is that a disease that is considered NON-DEGENERATIVE, becuase I have about 500 years of HISTORY TO REWRITE!"

Raccoon: Glad we know what works in the postcards!

Results not looking up, but Doctor will "look into" the extreme nausea "next time" - date not set for next time.

Shea: Hello Kitty is MOSTLY nice and cute, and I will still use the stickers, but know I now she has a wee bit of a naughty side!

Neil: I don't know, the woman is into it, that is for sure.

The MRI results are sort of the least of my problems right now it turns out. And also had nothing to do with the need to see me.

HOLY CLIMAX revelation - remind me not to ask you how Dark KNight is before I go see it! The BBC put that one out and since I believe it sold very well, I have to hope that in a few months the second season will be released, but as for now, I am afraid you have to wait.

qw88nb88 said...

Oh swell, now my daughter wants me to make her that Zombie Hello Kitty cake ...