Lesbian vampire girls in corsets suck face, blood, hickeys and drinks

Ahh yes, it was uplifted breasts and desire. Like I said I can do an hour a week or so, and this week, it is corsets and getting dressed up, going out on the town and spreading my wings, literally. Of course, with a recent medical report of anemia I needed to get a transfusion. Who says that it has to be painful? First I put Linda in a thrall of desire. Then I went for the blood and the velvet covered boobies. Linda is doing her, “Nice but I hope you finish this before the drinks get here..” not quite going with the whole moment...yet.

You can see an elderly couple behind us. One can only wonder what they were thinking, luckily I overheard what they were saying (remember I had a fever, and not just blood fever, so I may be a wee off).

Guy: “What IS that girl doing to the other in public?”

Woman: “Oh don’t notice them, those are just a couple of lesbian vampires. Or is it one vampire and her lesbian lover, I can never get that straight.”

Guy: “(Huff) Well, I never, I thought this was a respectable establishment.”

Women: “Oh Bill, get with the Millenium, I mean you didn’t mind the apartment Edith and I kept on the side.”

Guy raising his chin and getting stiff: “Well that was different, I mean it was the war and all…..Oh my twisted druthers, what are they doing now.”

Woman: “Stop staring Bill, is it just a little blood sucking, I don’t see how that is much different than the transfusions I get on Wednesday. They are obviously having a nice night out, just get back to your appetizer and let them have some fun before returning to the coffin."

Earlier I had gotten dressed up including using MAKE UP (Yes, I went lipstick lesbian, want to make an issue of it? On the bed? The floor? How about the in the whirlpool?), giving me the hopefully ‘cherry cordial chocolate kiss’ (nice on the outside but better to lick to the center) look.

But by this time our drinks had arrived. We found this place near us which has rockin’ drinks, big margaritas. They have a Hawaiian margarita (Cheryl had it) which tastes likes the Big Island tastes, the heat giving wafts of sweet pineapple and mango, the sweet honey, and the blue of the tide pools. Yum.

I have to admit that the lust was upon me, lesbian vampire that I am. I mean, earlier I was here, this poster girl for Big Sisters, I mean you would let this nice woman with her necklace of Morticia on Ivory, and black wings take your tween and teen out to an nice uplifting nighttime playtime? We could go walking in cemeteries, or if they were old enough we could watch films like...The Hunger (with David Bowie). But later, overcome with blood and unnamed lusts I have transformed. Not exactly the poster child for Big Sister now.

Linda and I came here earlier, notice the different corset and lace shrug.
We then found about the monster drinks on the weekend and destiny was created. Yes, I happen to be one of those people who find certain drinks to be aphrodisiacs, in a major way. I finally won Linda over to the moment, probably by saying something wildly inappropriate. I have always wanted to do that whole arm sweep to clear the table top and then leaping atop Linda, YUM. What? That is supposed to be done at home? Oh. Well I guess that is why I see it in movies and not often in restaurants. But Linda was giving me a glow. Yes, sex IS in the mind, and the partner, and booze, lots o booze helps too, who needs feeling below the sternum, right?

I think it best we finish with a nice innocent picture. See, this is me just being nice and cute. I do want to point out that for women, with the stress of Xmas and hosting, that masturbation is known to help with migraines, insomnia and stress. So PLEASE do yourself a favor and masturbate this Xmas season. That ends the public service announcement.

The last boxing class was this week until the new year. I have been having problems where I gain weight even though I eat one meal a day and work out like crazy, burn, literally with fever, and have a heart rate which indicates I am jogging. It is driving me crazy. But the lab results from this week might show some of the problem which is that I progressed some more in my anemia, lower Hemocrit, Red Blood Cells as well Hemoglobin PLUS even though on synthroid it looks at least part of me is dead. My free T4, which is what is used to turn food in the blood into energy instead of just storing it as fat, is below the limits, making me functionally hypothyroidism, so we are increasing the synthroid and seeing a doctor.

Beyond drinking alcohol and giving Linda hickeys, we also did postcards. Linda, Cheryl and I got together and got some postcards matched, stickered, stamped and finished, more than I thought as 48 finished postcards have already been posted. So the 38 from last week was even more, though it exhausted us a bit (a lot).

We had some nice donations, like these postcards. And here are pictures of HELL, yes, that is the gateway to Hell, or perhaps some OTHER ancient and famous institution, I can’t remember, but either way that is pretty goth. Also many vampires in this place, except like zombies, they feed on brains.

Also, after I sold the manga on ebay I was able to get some of the pictures and postcards I had found in Hawaii (I got them in the Thanksgiving sale - free shipping!), that includes this picture of the woman doing ‘the dance of the turtle’ – whew, fan me down, I am having that heat issue again. Or as Linda says, “She looks very…uh…fit and LIMBER.” Oh yeah!

“Are you LIMBER?” I asked Linda since she takes all these fitness courses at work and can do these positions with odd names like ‘the plank’ or ‘the seal’ and I thought it time to have a home work out, as it were. Um, yes, postcards, keep the focus! So here is the arctic fox and the dance of the turtle. We also did themes of books and asia/Japan, sometimes we did they together. Without Linda and Cheryl there is no way I would be able to do all the matching, stamping and stickering I do; there wouldn’t be a postcard project. Yes, I do a lot, and I write each one, source, buy and organize postcards, stickers and the rest but also we get great gifts from around the world to the postcard project (I am not the postcard project, I am the horny vampire – so gifts to the postcard project are ones I sort and use but are separate to me). Right now the project is at about 3,480 or so (2000 for the year about).

I had ordered a month or so ago some new year cards from Japan, as during new year people send each other new year greetings in postcards. And the postcards are all stamped with numbers and then on New Year’s Day the TV station reads which numbers wins gifts, from toasters and cell phones, to Playstations, Rice Cookers, and Cars. So not only does it pay to send lots of postcards (and GET lots of postcards) because then someone among you and your friends will win a prize (this is after coming back from a shrine to put in money, clap two/three times and make a prayer, then write a wish on paper and tie it to the nearby tree - New Years Visit). I wish I could do the same (the prizes, feel free to write wishes and tie them to trees), but I am not a national government. But I was able to send out about 18-20 new year postcards, most for this year directly from Japan. However, because they are not ‘franked’ (stamped) by the Japanese Postal System, you can’t win a prize beyond the postcard. Sorry.

And that was my weekend. Cool, yeah?

Screw Bronze, our anniversary, and you: the rest of the story

There are rules about what I blog and what I don’t. I don’t tell other people’s stories, so if you email me I don’t go ahead and write, “Hey XXX said….” If I do that then jump on me, because I am not respecting those who respect me, and in doing so I am not respecting myself either. Confidence is something I try to keep because I want to be a safe space and a good listener as well as a place to post comments publically.

I don’t write negatively about Linda unless we have talked about it. Linda is my partner and in a week we will have our sixteen year anniversary. That is a big deal to me. Linda could have left me; she had chances, many chances and there were two times, were we drifted apart and Linda was leaving me emotionally and in her heart. She was loving me, but putting emotional distance there too. Recently she did something which no one I know, no one in my extended family on both sides has ever done: She realized that she was treating me as less than an equal person; less than an equal partner and KNOWING that it would be painful and difficult for some time, she told me. She told me because she wanted to change: she wanted herself to change and how we were as a couple to change (which also helped me to choose change). The change was so we were not Elizabeth dying in a horrid way and Linda the caregiver who skates on burnout but Elizabeth and Linda the couple, one who happens to have a lot of medical conditions and the other who happens to help in caring of that. She is a hero.
She analyzed something I wrote, and analyzed herself and decided to act in a way showed one of the great acts of courage and dropped the bomb in a long conversation. During the change in roles due to my medical diseases has Linda abused me emotionally and up to the level of physical? Yes. Yes. But how she did and how she faced that and stopped is something that she will share when she feels like it.

While I am certainly wrong in opinions and the way I do things could be better I honor those who ACT. Linda faced a situation which produced fear and would have a negative outcome for her and acted....because it was right. I email a lot of people, and there are those who are willing to look into that most dreaded mirror, the one which requires change and ACT and those who will not.

And so I know who I trust. Who I grow to love, not because we have never disagreed but because we HAVE disagreed and learned to care more about each other than being acknowledged as right. This blog is about change, it is about my change and my challenges and how I face them, in the most open way I can express. But it is also asking each reader to examine the way they see the world, and themselves and to change. Because unless this is the most perfect of all worlds and you happen to be an archangel and glow in the dark, then we WILL together turn to face what we fear. And whether that, as it did in my case causes body dysmorphia (an inability to see my body correctly) and disordered eating (axorexia for me), or self harm, we go on. Because though I can’t be there as much on your blogs, I still try as much as I can to be there for you, as change pummels you, and as you go on.

Google took over Blogrolling and I couldn’t add blog names I wanted for months like One Sick Mother and the other people who I read (just starting that now). And if you click, they put up ads. I don’t like that, but because I am a tech idiot, I will live with it (click the box to eliminate the ads and you can comment). I don’t put ads on here because I want anything you do to be a choice. And if this isn’t a place which is free of flashing ads where you can enjoy the words and pictures, have fun, see squirrels, think and meditate and yes, choose if you want to help me or other people/organizations I talk about. What IS the difference between me going, “Hey, there is a really cool photo book on Elephants in my wishlist that Linda would love for her anniversary” (A Shadow Falls - HINT!) and me collecting hits from ads? Not much except that what I do, even my shortcomings I do in open (like how I am running out of Florastor which is the only thing that allows me to absorb what I do, even though I am officially malnourished - whee, fun! Linda just told me as I was editing this). Your choice is something that means something to me and I hope that every person who gives also receives (if not, drop me a line, I am human!). I don’t believe in giving gifts at Xmas, not when your life expectancy is the same as blackberry season. So I give whenever a message, a comment, or a voice inside tells me that someone could use something to say, “I care, I love you.”

So Linda is my hero, not just because every time I call in pain at night, she is there, caring every time, but because she did not what was easy but what was hard, but what saved us.

Back to you and the blog. I like this blog, and instead of doing a book of essays or another fiction book I put 25% of my life into this blog. And I liked writing for the BBC because there were people all over the world that I got to meet, people from Australia, from the EU, from the UK. These days, more people ask me for postcards and have no idea this blog exists because according to Technorati this blog has no influence. No one quotes it, or refers to and hasn’t in four months. My ‘influence’ has dropped from 146 to 3 (ouch!). While the 7 to 9 of The Postcard Project gets more notice. I would like to write for another health online venue but with a rapidly changing condition, I have not found one which will accept me. Alas.

This started out as the fencing and writing academic girl blog with a bit of feminism thrown in. Then it was the, ‘Golly I’m disabled blog.” Which was sort of wild and funny because I am sort of wild and funny (I still am you know). And then it became the ‘Girl Dying blog’ mixed with “Geez that could be me.” Because my disease crosses from SCI, connective tissue disorder, numbness, autoimmune diseases, Raynauds, nausea, nerve pain, muscle pain, bed days, loss of 'spoons’ and fighting and being frustrated in the medical system. Well, except now I am still alive.

Yeah. And you know what, as much as I would love to have you tell your friends online, in facebook, in twitter, in other continents to come and give me a read, a chance (and I appreciate the time people take to read me) remember NDY. Because while it is obvious that if I somehow am in control of this world, and while I live on I must be a bit of a masochist ergo the ‘modern medical system’ (MODERN my ASS! I have encountered doctors who haven't heard medical breakthroughs from the 1980’s – yo doc, there is a HIV cocktail now!). That you don’t have to remember, but this; that in all things I am pushing myself more than 100%, that every day, EVERY day, I am collected, I am picked up off the floor from trying. That I fall and fall, until even those who love me can’t stand to watch because I don’t give up, not now, not ever. I will ROAR because I am Elizabeth Fucking McClung and I am NOT DEAD YET and unless you are God, get used to it. Okay!? This is not an ‘Easy Stereotype blog’, and yeah, it going to hurt to read here and it going to challenge you. But at the end of the day, when you go out for pizza, I have to be held down, fevered and screaming. And I am not the only one, I am just the articulate representative for those who fall through the cracks, for those not easily defined. I am the one trying to speak for every woman, every man who has a doctor decides it is easier to blame the patient than say, “I just don’t know” (there are thousands of ways a disease/chronic condition manifests and thousands more where a doctor can be a obtuse jerk). So for those who go into a doctor’s office and hear those words wash over them from the white coats that they are now the one in six, disabled, and life will not be the same. But it goes on.

And until I draw my last breath, and until my heart makes that last beat, I go on. And in every encounter I try to help the person change to make a hard choice, to learn (translation: I piss off the medicos mightily!).

So, I am going to be looking forward, and here are some things to look forward to. I plan to unveil the carving of Jason Hunt with pictures in the week ahead. I, or rather CHERYL, or was it LINDA took a leap of faith/stupidity. In that there was a great seat sale to Hawaii, so sometime in October, I think early we are going to Hawaii! We just don’t have any of the money to like, sleep or get around or eat. And Linda says that is it both long, long away and not long away. So I am sort of doing the running around in place inside my head going, “Ahhhhhhhhh” before I hit the brick wall, fall down, get up and do it again. I can’t tell to be happy that we are going to hawaii or not. But I have determined to raise $800-$1000 to cover my costs. My allowance, is about $25-30 a week. I don’t know but I am pretty sure that isn’t going to do it.

I am going to do at least one road race with my racing wheelchair between now and Hawaii. Why? Because I AM NOT DEAD YET! So prepare your ‘Will she die this time’ betting pool, and let’s get it on.

And I went to the doctor today, the NICE doctor, the one who put me on Synthoid (gee, why do I keep going back to HER?). And though I do not have a GP, she keeps refilling my prescriptions and we had talked previously about pain control (she referred me to the pain clinic, the owner where she works canned it and I cried), but we also talked about medicinal Marijuana. And she filled out the form today. She took it, and looked at it and decided she didn’t WANT to say that she didn’t think I shouldn’t have medicinal marijuana, and so decided to cross out the line which said she would monitor me regularly and explain the GP issue and then check the, “I would recommend this patient for medicinal marijuana.” Which sort of blew me away (I mean, a doctor wanting to help me?).

She also looked at my toe and told me that they don’t do anything for broken toes like put them in casts in they are straight (this is the toe which ‘broke the door’ which had been slammed and banged 1,000 times). “They heal” she told me. Um, okay. So we drove from there right to the society which administers the medicinal marijuana in cookies and tea and for gluten free and such. And waited while they called the doctor to make sure that we didn’t make this up ourselves (do people do that?), and so they are covered and tomorrow I go for my induction to the world of medicinal marijuana.

I have a confession, I have NEVER EVER had a non-prescribed drug and even morphine I was only on for a few hours before I begged them to take it off. So no, I have never had a toke, I’ve never even smoked. No, I have NOT lived in a convent (well a cult but…). Just never did, I mean I am already really kind of OUT there sometimes and I figured not to mess with the things I had borrowed money and lived in the woods to put all this education into: my head. But now, getting a night’s sleep would be good for Linda and for me. So that is the plan, some tea for bedtime. Or what they recommend. That is tomorrow.

Hawaii (omg, I am going to Hawaii! Maybe!) Damn, I actually NEED manga for now, which is taking my money and yet Hawaii is the dream and people need dreams too. Because it is a long cold winter ahead, baby. Then there is the anniversary, and then me getting stoned.

So now we can share this adventure together, which I think is better. Sorry I didn’t tell you before (well actually the doctor visit I found out 87 minutes before we went), but now we work together, love together, dream together and yes, maybe die together. Because my being dead is still very much on the plate with my autoimmune disease unknown, central and peripheral autonomic failure and peripheral neuropathy. Yes, this house is BURNING DOWN. The neuropathy has reached my head and is now going at my nerves from all over taking the BIG nerves, and my spine trying to hold out, keep sending messages like a telegraph operator in a war. Which is why it is sword of fire all day and night long pain wise, I don’t move body parts so much because I can't, except to type though every movement hurts, every breath, every letter of this blog.

I do it because I choose my life, and I am NOT DEAD YET, just plain determined and stupid sometimes.

So can you please do me two favors: 1) Link me far and wide please? I would love to have readers throughout Europe, more in Australia, in China, in Tibet, because to be born is to die (sorry, Buddhist thing, that if you are born....then you must die, and so it is natural and part of life). And both are celebrations of change worth recording.

If not the blog itself how about my late blog on Disablism here, or the ‘Which child were you: age 2-10?” here or ‘five Manga review and ‘when your best friend is straight: a survival guide’ here (learning that some people are the hetero, and you may be a friend of the hetero can be a shock for some). Or ‘Boys with gendered girls interests (girly boys)’ here

The second thing is to please, please tell me how to improve this blog. I do not want it to be the pain and darkness blog. And yeah, I died, I got resuscitated, I died again, and again, and I still go on, am I a supposed to apologize that I am harder to kill than Rasputian? Okay, my warrantee is up, I am still losing things, still figuring stuff out. So lets talk about it? What do you want, more fun blogs? More blog where you get to talk and I just set the stage? More sexy talk? Or one essay a week about the premise of ideas in health care and how that works out (or doesn’t) with examples. Please let me know.

Thanks for reading this far, you made it to the end. Here is an ‘Ahhhh!” picture. Sixteen years next week and one relationship, ever changing as we do. I hope this blog to be the same.

Keio Bento and other surprises

Today, I had a BIG surprise, because remember long ago that package so carefully gift wrapped by Keio Department Store in Tokyo?

I didn’t. So when my lunch arrived by home care, tada! I had my very own Bento Lunch.
It turns out that I had bought MYSELF a deluxe Bento two tiered lunch box from Keio the day we left Japan. It can even be microwaved. I had forgotten about it but Linda had not. And along with my deluxe chopsticks and holder (chopsticks are actually quite good for eating with limited hand function, once in place just use shoulder muscles, you can even get a little device to hold them for you and then put them between your fingers). So I opened up the little carrying/warming case to keep the box all toasty (little rabbits on blue).
What surprised me the most was that I was fairly sick last night, and up until 4:00 am. I had been running a fever since late afternoon and so when I woke this morning I stayed in bed until the last possible minute. But someone had to let the home care in (the manager won’t allow a lock box for entry, something we will have to address again, now that I am in a vastly different state than last year). I was so punk that after a full Gatorade I was going to go back to bed….only my home care wouldn’t let me. She is the one that is all about the “person trying.” Well, she is supposed to come for showers but I get assisted showers other days because I need someone who will ASSIST me, not watch. And this woman needs to learn the new reality. There will be some days I will spend in bed, and it has nothing to do with trying or not trying: it depends if I feel so bad I think my organs are dying or my body wants to invert itself through a hole in space. Not long after she arrived I knocked, but I was in a fetal position and had knocked for help from there. I got oxygen and pain pills (the breakfast of well, not champions, how about addicts!) and felt good enough to sit up.

This is when I got my next surprise, I have medical appointments for the next three days, starting tomorrow. Tomorrow I have THREE appointments including two where I give blood. That’s right, it is dreaded needle time (I have Trypanophobia, it is even on my med-alert braclet, which means, you bring a needle towards me, I can go into a fugue psychotic state which allow me to move up to 300+ lbs with one arm - yup, happened more than once). And I get all THAT fun 30 minutes after I wake up. Super Fun! I also have to fast for X amount of hours, but thankfully, that did not include lunch. So here it is, complete with the little love lunch note on notepaper from a Yuri anime series with two girls lovingly looking at each other. Ahhh, what bliss, and Linda got up early to do after stay up with me on a horrid night with a fever spike? (LUVVVV TWUUUUU LUV!)
She had even made me a sticky rice with celery and stuff in it just for chopsticks. :)

On the bad news side, I have to collect a JAR (well more like a gallon container) of my urine and keep it in the fridge, I tend to use the large dixie cups and transfer (yeah, you really wanted to know that). And do two rounds of blood tests, one after not eating (the punky way I feel all the time now, not a problem), and one after eating (problem!). Plus I think another 7 or 8 vials of blood. Since I have needle phobia and will be drugged I then have to try and sleep the drugs off in time to make it to my next appointment where I HOPE I will be fitted or started on the road to my wheelchair with headrest. I wish I had more interesting or exciting news for you, I wish I knew why I feel so bad today my eyeballs want to drop out of their sockets. But I don’t.

On the more bad news front, in an effort to SAVE MONEY Beacon Home Care is giving all workers a “Medical Course” (two hours I think, or maybe just 1 hour?), where now instead of Task 2 with some pills, where a worker calls an RN to verify giving medicine that is life sustaining or life threatening….the workers just GIVE IT. A worker told me with another client they didn’t know a new medicine for their client and called in to find out (as they WERE supposed to do as the RN’s WERE supposed to verify the dosage and pills). The RN told her that NOW she, the care worker wasn’t SUPPOSED to know what the pill is, or what it is for, she is just supposed to administer it. Some pills are “Task 2” which means special instruction and medical training. They have eliminated that so they can get rid of half the RN’s at the agency. Think about it, do you WANT your chemo administered by someone with NO medical training, with no supervision, and where they GUESS?

If you have two different “Blister Packs” (packs of presealed pills), well then it is just Russian Roulette if you get a lethal dose because the worker will NOT be calling to verify that this is the correct dose and time anymore. Needless to say, the workers from other countries NOT fluent in English (a significant percentage), according to the people I have talked to, believe that if they DO call in, they will be fired, because it will indicate they can’t do the job (someone should tell them this is BEACON, they never fire anyone, at least according to the personal assistant to the Director of the Company). So now care workers will GUESS. Yupper, they take a guess on life threatening pills.

Now since I take a pill for pain which COULD wipe out my liver and since I am trying to UP the dosage AND since I tend to hallucinate in pain and not be able to tell time and ask for pills 1 hour after I get them….it means this affects me too. It means that a bad night worker could send me into liver failure (which kills you after three very painful days). And I haven’t even gotten to the scary level of pills yet, the ones where I am SUPPOSED to have an RN verifying the dose (you know, like they do in the hospital, instead of, for example, sending the janitor down to decide what dose you get or not!). But once I get those pills, there WON'T be an RN verifying, because the worker will have taken a couple hour COURSE. A course which doesn’t even tell them WHAT drugs they are giving and what they are for, or what complications could arise.

I told one worker that I anticipated an extra 3-5 deaths a year minimum from this new policy (oh, and a savings of $100,000 - $150,000, sorry, I forgot the important part!). And she agreed, she said that was the EXACT same statement she gave to the RN in protest to the policy. The RN told her not to call in again.

Somehow, I am not feeling the love?

Off to bed early (rise and shine for needle time!), I will have to be medicated to sleep tonight – that is the thing about having to wake to do your worst fear…TWICE. It tends to make it harder to sleep. I was scheduled to have a night worker tonight but they didn’t come. The scheduler said that wasn’t Beacon's problem and call the day people.

Linda was rather vexed, and said, “Is there a point OF your schedule? Today your schedule read that there was NO day care and a night worker and we HAD day care and now, 20 minutes after they are to be here, no night worker.” She was told to speak to the people in the morning.

The irony of it was that the person saying, "not my problem", technically, that was MY employee. I am paying them (or VIHA is on my behalf). Gosh, I wish VIHA understood the difference between advocate & employer and USELESS SUCK UP (one doesn’t pay the organization when they do a bad job, the other goes, “Oh well!”

I have asked when I can expect a spot inspection on the care I am recieving in the home. I got a strange look. Maybe that administrator didn't speak english? Or just didn't understand the idea of accountability...you know...with HUMAN LIVES!