"I am not 80!" and other relevant topics

Okay, here is the 411 (or Wiki) on me. I worked through the night with Linda and Cheryl to do postcards: please leave your sanity on the coat rack by the door. Little buzzed, and on continuous, and purple. Got that too much work, sleep buzz. Oh yeah, have a fever: week 5.

I had a sort of New Year wish thing, which was that the Make a Wish Foundation would allow R/18 rated wishes. Then Linda and I could do the naughty on a tour of hot tubs which happened to be by all the people who read this blog. A visit with friends AND the naughty

– no not together, this isn’t the voyeur devo lesbian tour.

That reminds me, I had a new night worker, liked her. I like her, yet somehow, first topic was to ask, after letting her know she did NOT have to do any anal evacuations (the good news!) if, THEORETICALLY, they would be for or against assisting me move to different sexual positions?
Odd look from worker. Must have forgot something. Oh right, told her it was not just me, you know...with Linda in bed.
I stopped.

I realized I was being rude.

“Oh sorry, jumped in, um, did you know I'm lesbian? Cause I am.” Turns out she knew before she came. Okay, good. Wait? How is that? Is it on the staff bulletin board?

Her answer is no, will not assist sex positions. But she will give me a bit of boost when transferring. Oh well. I have no idea if there if going to be a complaint or if she is coming back. I kept going. Why is it once I start speaking the naughty, I just KEEP going?

I said it was unfair. Since a lot of workers have partners and they get home and want to snuggle, want to do a bit more. I have a partner, only I have a night worker to take over when partner is ready to sleep. Except while night workers gets to have sex, I am not supposed to BECAUSE night worker is there. I had missed the ‘nun’ clause in the care plan. She is listed as tasked for dressing and undressing, (see, she needs help undressing/dressing) and I have used care workers to help me with corsets before. But for strap-ons? No. Because I am disabled, because I am needing a proven pain relief and relaxation technique, I can’t because….I am being taken care of.

Worker has look like my face has opened up and there is a nest of snakes writhing around. I try to make it all better.

‘You know how you wake up horny sometimes?” I ask. The look of sort of fascinated horror while staying out of arms reach from worker intensifies. Best to keep going: “Me TOO! Oh yeah, I am disabled, I am dying but I am not dead yet, you know! I still get those nice erotic dreams and wake up ready. And it is: where is the book? Where is the fantasy and most important, where are the SEX TOYS! Vibrator ho!” Plushies confused, true, but no time to explain.
“And THEN!” I raise my hand to illustrate the frustration. The care worker jumps back a bit. I go on, “Then I am good and going and things are starting to, you know, the hips moving or I think they are moving, it feels like it inside my brain that feeling and that itch, going up, up, building and BAM. The phone rings: ‘BEEP BEEP’, ‘BEEP BEEP’ – the day care worker has arrived to be let in.”

“What am I supposed to do?” I ask plaintively, “Should I let them in but keep on going? Is that what they are going to walk in on while making sure I am not dead and on oxygen? I mean, they masturbate, care workers masturbate, and we masturbate, disabled women and you probably masturbate.” I try to make the night care worker feel included. Her round wide eyes show maybe that not best move ever.

“Or am I left with this……FRUSTRATION while offered…..grape juice…..a laxative?” Sigh. “My life. It is all run by the timing, the workers only….my orgasms do not follow Beacon Health Care timings, and a laxative and a orgasm is something altogether different” (please do not share story contesting that!)

This is turns out is not that way to convince the night worker I am intelligent and stable person to work for.

Earlier, another bed day, new worker comes in, I lean WAY back on pillows so they look upside down as my head is backwards, hair hanging down the back of the hospital bed. “I am a doctor!” I say, “I am really smart, honest!” Okay, not subtle, kind of like eight year old saying they are 8 and three quarters.

I can tell, even upside down, that clients who are sprawled all over a hospital bed claiming degrees are not to be believed. “Seriously, I am smart, you can ask me stuff, it is just I get seizures and can’t talk, or talk slow and so people think I am dumb or they treat me like I am 80 years old….. ‘time to have a rest, dear!’ I hate that!” I look the worker upside down in the eyes, “I am NOT 80 years old.”

Did I mention having a fever for a while?

I hope they come back.

4 paragraphs to explain my disease plus: Love a Puffin, Masturbate and living.

I have just finished a blog post on the Postcard Project,in fact there was ANOTHER postcard project blog before that which I kind of forgot to mention, though I think is it a good post.

“To engage, to start a dialogue and get to know someone is a great joy, a great opportunity. I have been given this chance to get to know so many people…

..But I can make you feel a little less lonely, because I care, and I hope it shows, in a clumsy way, in the postcards I send.”

So please, if you want more Elizabeth, head over there and take a read (and a comment). Also, scantily clad Hawaiian girl if that is an incentive, plus lovely goth postcards! Linda has also written part II of the Flowers of Hawaii over at Girl’s Gotta Fly and I know she would LOVE a comment.

Also, I am sorry but the postcards this week were, um, scanty because after posting 94, I kind of used up most of the postage stamps. Oops.

The BIG news is that I have decided not to die. Sorry, you can get your entrance fee at the door. I didn’t say my body is agreeing with me on that one but I am tired of writing about pain. Geez, I am ALWAYS in pain, so unless I have something new to share, we will assume that, and that probably parts of me are falling off or looking odd or blood is coming from somewhere or another.

But, hey, still have decided not to die (screw medicine!). So I will be doing other blog topics. I will still update on health issues and want to talk about what it is like having a ‘bad’ dementia day: that Alzheimer’s, or Parkinson’s experience which frustrates caregivers. I will try to explain from my notes and experience why we cry over your not giving up toast, or cake, when you actually gave it five minutes ago, or why we call you the name of someone who is gone, dead, and how that hurts you but what does it mean for us?

Right now, with Xmas on the way, I am masturbating, oh yes I am. I woke up this morning and thought, “Elizabeth, what gets you horny?” Good thing I have all these art books. Is getting aroused at an anime drawing a good or a bad thing? I think, since I can’t really move around a lot, a good thing. But that will take a bit more time (please continue to masturbate anyway!). I am studying (rub-a-dub!), I am collecting pictures, I am trying to find resources. Yes, we are too sexy for this wheelchair, too sexy for this bath bench, help me undress, oh yes, oh my!

See, even chronically disabled, or those with degenerating conditions can be horny. Stay tuned for blog post.

I realized that some people may not know what I have medically. BEFORE I was ill, I had Marfan’s and P.A.T.’s due to an extra node in my heart. Marfan’s is a genetic bone and muscle condition which makes your muscles stretch as the genetic switch to stop your bones growing doesn’t always work. So I have different sized bones on my body from side to side, and due to my knee bone growing into my kneecap, I had surgery on both knees. I hyperextend, as the muscles are pulled longer than they are supposed to be, this causes muscle pain, and my knees to go backward, and my shoulder to dislocate more often than others.

Then I developed a disease of Central Autonomic Failure. Autonomic Failure is when the things we don’t think about, from pupils dilating to blood pressure to heart beats, to converting oxygen from lungs into the red blood cells doesn’t work, because that part is damaged. I have both Central and Peripheral Autonomic Failure, plus Secondary Raynaud’s (which means my extremities turn funny colors, are cold and for me, not for those with Raynaud’s naturally, I can have veins collapse and start to rot, and require amputation – like Diabetes – this is another reason to exercise rigorously).

I also have progressing Neuropathy, which means there are 5 different types of nerves, and my nerves are being sort of eaten by the body, so I have limited to no feeling from my HEAD to toe. But think of nerves like a giant road system. Just because thousands are destroyed doesn’t mean that a person driving back roads might not find a way to bring a message all the way forward, particularly if hundreds to thousands of cars start out to find a route. This is what happens to me and to some SCI’s who have a partial or a break with some spinal nerves. So sometimes I close a door on my hand and feel…nothing. But other times, my feet, from the cold, or when I break a toe, I get, a second or two later, a flash of pain, and then it sort of dies out, as other messages crowd out the pain message trying to get through such a odd route. I type 5 times slower because the messages to my major muscles are both slow and erratic (taking the scenic trip on the back roads).

Because I have Hypothyroidism from a secondary Autoimmune disease, it is almost certain from my symptoms and visits to three different hospitals that I have AAN, Autoimmune Autonomic Neuropathy of the vascular centered variant. Only four disease have Autonomic Failure as a primary symptom – one is POTS, Postural Orthostatic Hypotention – I have the Hypotention but I don’t have POTS, or MSA (Multiple System Atrophy), the most common of this uncommon disease, and seen mostly in seniors, with three types, one related to Parkinson’s’ (used to be called Shy-Dragers or Parkinson’s Plus). The Hospital in Vancouver confirmed Primary Autonomic Failure, the Specialist Hospital in Washington State confirmed it is not POTS or MSA. The Hospital here confirmed it is vascular in focus (meaning the veins randomly close, and I get a micro stroke called a TIA, or I get a larger one, or my ear drum blows out, or blood doesn’t get to my intestines, the food rots and I have a gastronasty!). Two down, two remain, which leaves Pure Autonomic Failure, and AAN. But Pure Autonomic Failure doesn’t have Neuropathy or Autoimmune Disease: I have both, so does AAN. These are all diseases of exclusion, determined finally in autopsy (meaning there is no, take my blood and see if the water turns blue test - you match the symptoms until nothing else fits). 90% of PAF people get MSA, the average lifespan of MSA is 4 years from onset of first symptom (not diagnosis), the average lifespan of AAN is about half that (no study of AAN has been done because no one can get enough people WITH AAN together and have enough of them live to the end of the study).

There is no way to prevent this disease. It is really rare. It is like winning the lottery, you don't win the lottery by eating green food, or doing pilates, and you don't get this or have this cured by doing any of that other. Medicine has known about this dying of brain disease for 109 years, and so far, the only treatment is a pill for those with MSA-P, that helps 10%, and now IVIG for those with AAN (plus symptom treatments, like beta blockers, oxygen, pain management, synthoid, and other symptoms treatments) IVIG is a possible good thing because IVIG passes the blood brain barrier and kills the auto-immune system of the brain which is attacking the autonomic section. It is not a cure all, it doesn't work for everyone, but it is hope of stability. And the only hope I have right now (medically).

That is what I have, that is why I stop breathing (because the switch that says, ‘breathing is good’ is too weak to work, or the nerves to my diaphragm stop working, or similar issues, like my heart is too erratic to pump blood around), or get very ill, and can’t sweat and have the air conditioner on when it is –5 outside (I do, seriously!) – turns out that masturbating makes blood flow, increases heat. I have no way of dispelling that heat. I am, this morning going, ‘oh my, oh my, my hands are green and oh, oh, oh, I am sooo close, why am I super heating, don’t think of that, think of the sexy, oh yes, so close’ – followed then by, “Oh shit! I am way, way too hot, I need to do something because death by masturbation is not as wondrous as it sounds.”

Yeah, sometimes it is GOOD when workers aren’t here, as what do I say when I have all my tops off, the air conditioner full blast and a care worker walks in, with me saying with a wild eyed expression, “Quick, get a cold cloth, I am masturbating, and it goes well!” So to recap, postcard project, Hawaii Flowers, not going to die, researching desire, masturbation, more masturbation, and what disease I have. That’s it. Have a great day (oh, computer thing on hold for a couple weeks, and I go in for blood work at 7-8 a.m. tomorrow). Oh yeah, and I'm going to live.

Catgirls, postcards, masturbation and the future.

What am I doing?Why finding shapes in the clouds of course! No, I am trying to figure out how to become a better partner, a better person, and a more honest blogger. Linda told me to blog with honesty, not for comments, or readers but for myself. Yes, the comments matter, but she feels that my need to write matters too. So this is what I decided yesterday and today in contemplation: I am going to try to React emotionally less, and try to act instead. That plan worked for a WHOLE 90 minutes. Part of the problem is the disease, part of the degeneration of the mind means that effectively I have the emotional aspect, much of the time of a 8 to 12 year old, but the vocabulary of someone quite older. Plus, as my mind continues to erase parts of my life, the most emotionally vivid are left: my dreams, my struggles, but also my horrors. And so, I have inadvertently offended people because I reacted out of proportion of the situation, for an adult. But I am still going to keep trying.

So I try to not REACT, though when I got the ‘nasty’ EEG tech on Wednesday, I couldn’t help do a little debate to wind her up, which she got revenge on by having ‘the last word’ while telling me I had to stay still or ruin the test. Then when removing the 12 electrodes stuck in my hair and scalp, the hair that is thinning even more, she ‘saved time’ by simply grabbing the cord they all connected to and YANKED, ripping all the electrodes (and bits, and chunks of hair) off of my head with force. She also came over when I could not move, and kept raising my arm and dropping it to see the dead weight. We COULD have used that data to compare how I am sending OUT the signal to move but nothing is happening IF she had made a note, but she was sort of annoyed at me because I wasn’t moving and came over and played with different body parts. Professional? Um, I thought morticians had more respect for the body.

I have a favor and something of interest to ask you to take a bit of time to look at. The first is my Postcard Project. I know, Elizabeth and her Postcard Project. I would like you to ask to think of anyone, including yourself who would like a postcard in the next week or two. Because as people become busy, rushing around, there are some who are NOT going to office parties and who are not having a ‘good time.’ And maybe like me, who are estranged from their family. Or maybe who don’t get a lot of Xmas cards. Please post around about the project, I am asking as a favor. I know last time I got offended because I was depicted as a poor crippled woman who needed something to do. But you know what, I am poor, I am crippled and I do need to send out postcards, it is in my blood. I don’t care if I am portrayed as the little match girl reincarnated. I don’t care if the people are able bodied, I LOVE sending postcard, I don't care if they are super able bodied, or have superpowers or are famous. Or they think it is amusing. I don’t care. I just want to send the postcards. I am NOT going to let myself React, I will act. Honest!

I ended up talking today in an interview about accessibility in Victoria about the Postcard Project. Because I said that for me, accessibility is making sure that everyone is included, that everyone is having the same good time, the same standard of experience. I told the reporter that I realized that I was privileged before, sure I had tried to eliminate any discrimination on race, and worked toward gender and sexual orientation equality (sigh, but if only those heterosexuals would just, you know, not BROADCAST the orientation SO much with kisses on TV, and that! Sorry, still working on that one). But I never looked at people using walkers or those using a cane, or a wheelchair or any assistive device or brace and thought ‘that could be me’. No, that was THEM and I was me, and so when I fenced or I did sports or taught or was in church or participated in society, I would make some accommodation IF TOLD TO. But I never looked around and said to myself, “All of us, we will have the same level of experience.” And worked toward that. Because they (a wheelchair, for goodness sakes) weren’t like ME.

I’m ashamed of that.

So when the reporter asked about the Postcard Project I told him that is was my attempt at postal accommodation. That with impediment or not, that stuck inside due to snow or ill health or not, lonely or not, healthy or not ALL would be equal in The Postcard Project. That is why I would ask for a favor and have if possible that people list about the Postcard Project, and link to it in boards or with people, or on forums that I DO want to send people postcards, very much. This isn’t my penance, this is my progress.

The second thing is that a man named David Wybenga in Japan is helping me find some postcards. He and his wife run a program in Kyoto called The Japan Cat Network, because in Japan, problems (like disabled people for example), are not talked about and pretended not to be seen. Stray cats is one of these problems, here is an English article from The Japan Times on it. Very few stray cats are neutered, many cats are simply abandoned in ill health. David and Susan do a Trap, Neuter and Release program, they take ill cats to the vet and take in abandoned kittens before they die. For instance Sylvie was misidentified on intake as they post Sylvia's picture on the webpage and say “is actually a boy...” Oh well, gender bending fun for cats too! They have a page which lists ways to help, from a donation (you can even sponsor a specific cat), to helping translate (English to Japanese or back), to buying a T-shirt, sending cat toys, or cat food to (oh why do I live so far away!?), coming to attend the monthly cat ‘play days.’

This of course, in true anime style got me to thinking of cat girls (a common anime theme! What is better than a cat, and a girl? So first I had to find the ‘Linda’ catgirl. Here she is: she is professional and businesslike and only relaxes at home when she gets her fur combed out and then gets high on catnap and chasing birds that ALWAYS get away. As for me, here I am in a stylized, “Anne of Green Gables” catgirl. This would probably finally make my mother happy, but in reality, to those who know me in person and on line, that’s not really me is it? No, the truth (and I am trying for honesty here), is that THIS is me as a cat; a little insecure, a little neurotic (talks to herself, talks to her plushie), and a little in need of reassurance more than the usual cat. Also tends to ‘run away’ to like...the garden, and then sulks when no one notices and comes back. Then brings back a falling leaf she 'caught and killed' and wants to be rewarded.

Just as I know there are many cat owners out there (and I would love to be one of them!), and cat lovers, that this might be a project you would find of interest. Since this is a very global blog. Knitters please wait, I WILL have a knitting themed blog post in the near future, yes, be still all of our beating hearts.

Thank you for reading and for checking out the sites and if possible for passing on info about the postcard project. I have met some wonderful people and friends through the last time, and yes, I have a lot of people I send postcards to that I haven’t heard back from but that isn’t the point. That the postcards went out and they got them is the point!

The question for me, which I don’t know if I have faced is, who am I going to be in the future. We don’t talk about the future except for dying. Well, there is a space of time between NOW and dying and that is the future. And that is what I want to talk about. Because in a lot of ways, I have been so busy trying to make the future longer, or better that I kept missing it entirely, until it became the past. And quite honestly, sitting in front of lilies (waiting to die) and always looking backward, at what was, is okay, but not a life. It works for a time, but then my legs get all cramped, well they don’t actually because they don’t feel, but it is silly and stupid. Get up and go and DO something.

Okay, I am not the same Elizabeth who wrote Zed, which is a good book (oh and on sale at Linda's website again, we got a shipment from the publisher!), not my BEST novel, but a good book. I have realized I am not going to be the person who I dream, or dreamt of being, or who I liked being in my casual moments (this picture is for Cheryl). I am severely disabled and that is that. I spent a great deal of my time in an environment much more like this (if you just imagine a wheelchair, tons of books, stacks of paper, boxes of postcards, boxes of stickers, and everything from nose cream to stop my nose bleeding to steroid inhalers to keep my lungs open) instead of that clean table top.

I have good memories but I am never again going to be what I trained to be, no matter how many fencing and epee books I have. No matter how many dreams I have where I am fencing or have a sword in my hand again. This is wonderful to look at and wonderful for a time, a small time, to remember, but then, I need to move on.

A great deal of my life, when I am not in my hospital bed, or at the computer is spent like this (only I DON’T have a real cat to hold, but I have something close!). A little lonely, a little frustrated, trying not to be angry or sad. 'Being' means dealing with what comes: today my hands were shaking for the first four hours or so (couldn't hold a drink that well), and now they are still shaking but only a little, so I can type. I live in my mind; a mind which I know will probably erase everything in a few days. And to be honest, if I had more sensation, I would find the perfect story or fantasy and then I would masturbate again and again and again (hey, I forget every few days and the fantasy is just as good the 2oth time - perfect plan). Okay, yes, probably NOT what you thought I would be doing, that I would be writing the UN. Okay, fine! When I’m not masturbating, I’ll change the world, how about that?

See, honesty. I wake up horny some days, I just can’t seem to do anything about it – but with some tips from the MS society, I am trying (but oh GOD is it frustrating to get so CLOSE!). I have created myself a few jobs: the postcard project is a big one and I am going slowly through and editing some of the essays to try and make a book about degenerative and chronic disabilities. About the real stuff, which does yes, include the days you are high as a kite because they got the pain meds a little wrong (but in a GOOD WAY!). But also the days of crying, and of feeling that as a person, I can’t go on, that I was permantly BROKEN. But humans are unique and resilient. We do go on.

One thing I forgot for a while, because I was so worried about the pain, and that I was dying was about my future. I have an outline of a plan. Money from publisher is not coming, so I will work on another book. Because I want to be in Hawaii in the spring with Linda, Cheryl and anyone else that wants to join us – lets go to the Onsen! I will sell anime, I will sell books, I will sell things of the past, the life that I do not have. Because I will, yes, with some emotional pain, look to the future. I am taking off my wings. I am going to be mundane, if that is possible for someone with an open file as a cult leader and possible murderer! I am going to slog away at things and try to do a good job today so that I can reap the rewards in the future. I am going to spend quality time with Linda now, so our relationship is as strong or stronger than when this started. I told someone today, “Well, MSA has a 100% mortality rate…..so FAR.” It isn’t over until it is over. And while I am not a sword maiden anymore, I am not going to just wait around to die. I hope you have a great weekend. Cheryl and Linda and I will be doing postcards (and hopefully filling the new requests that pour in!).