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.

Multiple System Failure: denying death and how to 'splat'

The good news for me is all systems seem to be within normal limits (passing out and purple hands ARE sort of normal limits) a sort of status quo, or rather a little lower than status quo. That is thing, I never get remission, I return to 90% or so of what I was only a few days before and that is as good as it going to get. That’s what we are used to now. Indeed, what should be frustrating is how I am already used to now being housebound. Where is my will? Tired I guess. Or hibernating, that’s a better image. Okay, time to sum up what has happened and is going to happen with the blog.

Why aren’t I dead? It is a good question isn’t it? I only noticed when the police gave me the “evidence” of my homicidal tendencies (the blog about Linda’s bosses and my financial and anxieties of where I will end up like in a “home”), that I went through a period early to mid November where I thought “this is it I am going to die.” Then two weeks later I wrote about stopping breathing, and how long will it be until I die. So the problem is, HOW LONG?

It isn’t quite that easy. If I had cancer, there would be 10,000 other patients who had died in front of me and they could say, “Based on that, I think you will have X months and it will follow this progression.” I don’t have cancer as far as I know. My primary disease is rare, and how it affects systems is unusual and it seems to jump around a lot. That is the whole “multiple” part of multiple system atrophy. But hopefully in Seattle, and we have/are already reserved tickets for that, the date for the MRI is being set up here in Victoria so that will go to them as well. And maybe they can tell me what the progression is. And then I will tell you.

I bring this up because I do not want to seen as a deceptive person. I am not, but with my mental condition of living in the now, because I cannot remember, it may seem that I am creating urgency repeatedly of emergency situations. I, or Linda or Cheryl or others can assure you that this is not true. Once my body becomes so weak that it appears that it cannot sustain breath or heartbeat, or that if hospitalized, I would not be stabilized, then it seems, sometimes for hours, sometimes for days, that this is IT. That I will die. One you believe for two or three days that this is the final stage, eventually I say something. Linda and I want me to die in my home,even if I don’t recognize it that day. This is why we are working to get in the palliative program and delay an unplanned hospital visit/stay (in palliative Linda or home care workers can call for a nurse, drugs and other treatment is administered in the home). Of course, in a choice of all worlds, I would still love them to find that this is a banana deficiency and everything will return to normal. Then, once cured, I will be up and about,and on THAT DAY this city WILL tremble.

But that is the myth of western world and medicine, that with enough money I don’t have to die. And that I don’t have to suffer. That death is beautiful. It is rarely beautiful. This is WHY many places have Euthanasia laws, because dying can often be a delayed and brutal process. My grandfather, who had what I consider one of the most peaceful and joyous deaths still took TEN DAYS to die. You stop breathing, then breath again, then stop, the body tires. This can go on for days.

Indeed, it is the nature of all of us to want to believe that our fears of death are unfounded. I need to be propped in front of the computer but after an hour of only moving six fingers I think, “Hey, I’m not doing too bad, right?” A few days after I stopped breathing for 20 minutes Linda said, “That was a pretty good day.”

I was slightly confused. “But I passed out about 10 times? I was to weak to wheel myself, and you needed to wheel me everywhere and transfer me.”

“But we went to Starbucks and shared an apple cider! We hadn’t done that in a while, it was spontaneous.” she retorted.

“Except you had to carry me into and out of the chair, I was on oxygen and passed out twice there!”

Linda thought, “I still think it was a good day.”

I understand what she means; she means, “Yes, there may have been 15 or 20 little ‘emergencies” but I didn’t think you might die ONCE today!” That’s why we have no plan on ‘when to call the ambulance, or should we let Beth die?” Who wants to jinx a perfectly good day? Besides, do YOU have a plan like that with your friends and loved ones? I thought not!

Linda and I are the same, so is Cheryl. Even yesterday, bent over from cramps but able to type out one or two emails on the computer said to Cheryl, “Well, this is a hellish life, but I still prefer it to no life! I mean, a few good hours a day, that’s something! Sure, I can’t seem to be 20 feet from my toilet but….I’m alive.”

The thing is that my mix of conditions makes one body system come to the front for a while, it becomes emergent and then goes into crisis. I survive that. Then while I still have many near-crisis, like having me stop breathing for say, 3 minutes or 5 minutes many times a day, that (the not breathing) becomes ‘normal.’ Linda is used to it, and as long as it is just a “few times” with the ambi-bag, nothing to worry about, and then I slowly bounce back. Well that is a lie as it is never ‘back’ but to some lower level of energy – so now instead of choosing to go to badminton twice a week, I need a very good week to go one night at all. As for my mental deterioration, which I hope doesn’t show up on the blog as much, is in and out of dementia. Even now, during a ‘good’ time, I don’t think it would be advisable for me to leave the apartment without someone knowing where I was going, and for how long, and have something there who knows me, and knows that I am coming. And that WOULD be on a good day. I have a need for friends, people who can catch me, guide me, during these final weeks (months, I hope).

As the last few days of fever, and blood have shown (blood as stool can be a byproduct of an auto-immune disease run wild, and I have two), now secondary, or incidental aspects body functions, affected by my condition are starting to collapse. And as they do, THEY dominate my life, for a while. And I imagine that this will happen in different ways, perhaps my retention will develop into a kidney infection, or my liver will do something funky, or I will aspirate more. I am still losing weight with no explanation. It is the same with my peripheral neuropathy and anemia. Every time I burn myself or feel myself for 30 seconds after a chunk of flesh is removed before the nerves die again, I think, “I’m getting better, it is coming back!” I ignore, the blood coming out of my toes, or the possible hairline fracture in one of the ankles, because “I’m getting better.” I even have a plan, I am going to be going to the hospital to the ER to have them examine the erratic of my heart and see what can be done.

That is how the day after I almost die, or technically die or am saved again, you find me hunched over, with two fingers buying stickers on ebay. Because I WANT to live, and I want to act like I am going to live. Yes, I am afraid. I can't stop that. But I want to believe, even if it requires ignoring a bit of reality. However, I have noticed that I have lost my patience for vendors or people who say, “Oh, wait until Jan. and we will restock and we can ship it then.” No, I can’t RISK waiting two months for delivery, it needs to be now, now!

I am going to sleep now, because I want to go out and feed squirrels tomorrow unless it is snowing or raining. I finally am understand what people with chronic conditions already know, that it isn’t always the big sounding things that keep you down, but a fever or, like today, tremors in my right arm, and hand, and my hands turning purple, plus passing out over and over again. Will I die? No, I hope not. But if this is my “new normal” then, I am a bit closer to that tipping point at which my body cannot be revived. Multiple system is a system that doesn’t kill you ITSELF, it lets every single system slowly die at different rates, until enough of them manage to die at the same time to kill you, or weaken you enough to put you in a coma. That is why a simple cold is the number one killer for my condition. Because it gets in the lungs and you aren’t strong enough to keep breathing AND keep the heart beating AND keep the veins dilating, etc. Death by attrition.

I am not trying to be morbid, I am finally understanding the process of this disease a bit, and I believe, with some sort of booster, maybe found in Seattle, I will be able to last a while (quite a while?). I want to last quite a while. Linda says that my readers aren’t mad at me for still being alive. “But they must be,” I say, “I gave them the thematic climax, and now we need the resolution of the story.”

So, I will go back on good days to writing about disability and lesbian fun stuff and other issues with as much humor as I can. I am interested in doing some theme days, and exploring the sexuality of the mind, which yaoi has given me a glimse into (for someone who is losing sensation in their clit, I have a renewed interest in sexual fantasies!). I appreciate everyone’s comments (not about my sexual fantasy obsession! Oh heck, talk about that, you will anyway). I will write about socks. I will write about corsets. I will have pictures of me taken again (I am too weak today for a shower, but tomorrow?), and I’ll post them. Winter will not win. I will openly and unashamedly lean on Cheryl and Linda and all of those who genuinely give parts of themselves to sustain me, from weekly mail to emails. I thankfully take this not because I deserve it, but because living is the only game in town, and anything that helps me keep in that game, is the kindest gift.

Linda has done a post, and I think it is part of some fundraising she has regarding my books. I am selling my manga on ebay and LJ for the trip to Seattle. I won’t be able to do anything except send postcards for the next month. I know from years of selling is that 5% of post is lost in December. I have limited resources and I tend to get things that are unique, so I am not going to risk YOUR gift disappearing. That’s why many people should have gotten packages this and last week (about 50). This isn’t Xmas, this is me saying that I think about you, I care about you, you are part of my life. If you didn’t get a present this week, well, maybe you got one earlier, or maybe it is still coming, I don’t know. I just am saying that I can’t risk losing a package during this month. So more postcards. More blog posts. More community.

Together. That’s a good word isn’t it? I need to remind myself on slow days, and bad days and days I can’t move that I am not alone and neither are you. Together. You are as close to people as you want to be. Just write a line, and I will try to write back. I know that feeling, that question, “do I even exist in this world?” as people go on, completely missing your misery, your terrible day, your loss, your frustration, your fears. Yes. I can’t solve everything, I wish I could. But I am here. Just as others have been here for me, from knitters, to film editors, to organists, to belly dancers, to librarians, to students and university teachers. And to the host of people who are SO much more than their disability, and yet have shown me how to survive mine, if not with grace, at least with a gigantic splat and then a voice coming from the ground, “I meant to do that you know!”