How to make a miracle; even as it crumbles

I have edema of the brain.

My grandfather, dying of MSA, had a shunt a few months before he died for edema of the brain. I’m not getting a shunt, but I’m not going with Linda to see my nieces and nephews at the anniversary. The relatives got her a sale plane ticket, and in Canada, if they bought it with my name then Linda could fly free as my care giver.

But the pressure of the plane going up would likely kill me with edema in the brain causing a massive stroke. That is what my doctor told Linda.

I didn’t know. I was told just over a day ago that Linda would be taking her vacation time and I would be going to a home, a ‘care facility’.
There is no joy in learning that, only loss.

For over 180 days I have been fighting my edema. I was about to blog my progress, in between bed days, on how this is what my leg and ankle looks like. Yes, my leg is thin and about as thick as a pack of cards, the ankle can be circled with a thumb and forefinger but it isn’t giant and bloated. My face looks like it used to, and my extremities are thin and healing. I am wearing my wedding band again.

My edema is a combination of the collapse of the cells themselves but also the failure of my circulatory system. Once awake my ankles, legs and torso slowly lose against edema until I sleep again. But it is a start.

I exercise every other day, boxing once to twice a week along with steam rooms, long wheeling and exercise hand cycles. It hurts but I have wheeled to the Beacon Hill Drive in, to downtown and back, all in the night when it is cool. I was entering the Canada day 5K, my first since 2008. And a 10K in August, two of the three I need to justify the cost of renting a racing chair from the Wheelchair athletics association.

I wanted to tell you earlier that this girl was going to fly but I wanted to make sure it was more than just once or twice but now three weeks of exercising and going out wheeling three times a week. So, a girl’s gotta try, gonna fly but still gonna die. Turns out that this isn’t a remission just the end of months and months of trying and trying until now I am out there: outside, where life happens.

That’s why I need and am working to get new bottles and freeze bottles (there are two layers, you put it in the freezer, then put in the water before you go wheeling - ice cold drinks to bring the core temp down while wheeling in summer), I have them on the wish list. Gloves too. I just split my last two pair in the three weeks of wheeling. No gloves. But I'll find some. And I am going to wear them out wheeling.

I wanted to make a miracle.

I can do things that would have been a fantasy dream only a couple months, six months, a year ago: I can wheel to the Ross Bay Cemetery and back. I love being outside, and I want it to last as much as it can. But it is not spontanous remission and the cost is very high. Yesterday I exercised until I passed out completely and upon waking go right back to my count of doing pushup's balancing atop the back half of a half yoga ball. I'm screaming from the strain, until I pass out again (I dind't make 35 on that one, just 16 until the first pass out and another 7 until I passed out for long enough for my care worker to roll me into recovery position). So during that, and later I bleed from my ear, my nostrils, blood bursts in my eyes, and bleeding from anus and vagina, plus pus from the eyes out of the tear ducts and sinus: those high blood pressure ruptures are just part of the cost. I’m forcing all that this body can give and far more than anyone would believe. But I’m still dying. The heart, lungs, circulation and brain are failing, all systems. The bathroom plastered with blood stains, bloody cloths, tissues, and clothes: part of the miracle.

I still die alone.

But not today and not in bed.

I hate to lose and I'm losing. But I have now, and the lighter body makes it easier, a little more energy, and I hope to blog post more, email more, write more, postcard more, send gifts and thanks more. And to live and love with Linda more.

I still send out postcards, a few at a time. It is harder, but I keep going and there are so many beautiful cards to send to beautiful people. The same with the thank-you notes for the birthday gifts, they go out a few a week because I measure my energy in weeks, not days or hours.

Also an ebay auction sale, it is finishing Sunday, there is manga, anime (a great baseball one and a cult out of print BECK’s) and films from Korea, UK, Japan, and the US. There is the fifth season of Rebus (out of print) of 4 DVD’s in Scotland being both charming and that rakish drunk detective the British do so well since Sherlock took drugs when bored. One film (Sign of life) is about rescue work in Tokyo after an 8.0 earthquake, another is about the last great Empress of Korea in 1895, and the love, unrequited, between her and her bodyguard – it is a part of history that is worth knowing in the high production The Sword with No Name. It shows the expansion of the Japanese ‘empire’ into Korea and the Queen who faced down several empires to preserve her country. She is still revered in Korea today. Also is a new BBC series, already filming series two about the family who owned Bedlam coming back and converting the old asylum into luxury flats. They are trying to cover the grandfather who tortured and illegally operated on inmates. There are so many angry ghosts and Jed, the adopted family member who as handyman tries to communicate and appease the ghosts before killings. Turning asylum into apartment wins WORST IDEA EVER! But the architecture is lovely and creepy both with all the old Victorian splendor, sort of Steampunk Insane. Because the new 'it' thing isn't just a reserved and elevators in your apartment complex: having a Victorian cemetery and children’s cemetery too is a MUST (But warning, patients dumped in asylums, raped, forced to have children out of sight of society and then they and the children being experimented on makes for REALLY angry ghosts).

It is a pretty good series as I am remembering and thinking about it a lot. I'm looking forward to Luther Series 2 and The Shadow Line (from Amazon.co.uk), except now in Canada we have no post, as the postal workers went on strike THEN the owners locked them out (The advantage of dementia is that the surreal seems normal).

The ebay auction is to save money for emergencies, which abound, including Linda’s root canal today, which she found by doing ‘Bike to Work Week’ – the cold on the teeth brought about infection and pain. This produces a ‘WHY?” to the divine that biking to week equals owing $800.

Oh, due to degeneration of the frontal lobe TV and films are VERY intense for me and Stargate Universe Season 2 was amazing and so sad it finished. Any series where geeks have the bridge of a millenium old starship that dives into the out part of stars to slingshot forward and recharge energy is great. Where one got there by winning a game on dialing a 9th chevron is better, and the jokes about ‘That movie Star Fighter is SUCH a liar, my Halo playing means NOTHING!’ even better (In Star Fighter, an arcarde game once one calls an alien race to collect the ‘ultimate starfighter’ – it was the hope all young geeks). But both that and Royal Pain 2 (the two best TV DVD sets so far of those released in the early summer) left at the end in an unresolved way which no amount of staring at the screen resolves (Boris is a jerk!).

I am watching Haven, Stephen King's series of a weird town in Maine, which happens to be full of Canadians with THICK Canadian accents going, "So you're FBI eh?" and "Best ya go visit the Moose Farm." (actual line from Haven)

So, to bed so I can exercise and wheel again. Outside at night is not bad, as I saw five raccoons the other evening. Oh before I forget: terminal degenerative diseases suck (pass it on!). The dying part is a collection of random sinkholes of loss and despair that keep showing up no matter how hard I try. But I keep fighting.

The Power of Myth, fine as it is, misses women entirely (wha? Yeah Joseph Campbell, who wrote this post grad in a cabin during the depression, and likely didn’t see many women – but woman have myths beyond ‘find the guy’ and ‘have babies’). And one is the eternal warrior. She is driven, and has no peace, rarely any modicum of normal life, whether Joan or Zenobia, Hua Mulan (recommend the two disc special edition DVD in the UK for a good version of her life) Maria Rosa or the Trung Sisters. Unlike the ‘heroes journey’ she has no hope of acceptance, or long lasting history, the odds are almost always overwhelmingly against her and yet in each culture, these women fight anyway. I think much like Loki, whose eternal suffering and writhing creates the earthquake, so the summer storm’s thunder is the Eternal Warrior in battle against the Foe of all names.

I hope when the last race is wheeled and the last battle fought that I rest in Taigh na Banaghaisgeich, translated as ‘Amazon’s Home’, an ancient structure in St. Kilda, Scotland. Far better than joining a bunch of drunk Viking guys in Valhalla.

Dying - I lived!!

A video dedicated to Linda: To my partner, we saw the lava, we did the 10K's, everything people said was impossible, you were there, knowing the risk, seeing me spit blood and letting me do it anyway. If you weren't beside me, or waiting at the finish line, there would have been no point in finishing. For without you, a mountain is just a mountain, a forest just a forest, not a secret joy we shared. We made a pact, you and I. And because of that, I lived. I will keep living every day, because now, every day IS the finish line.

I recommend watching it on Youtube in FULL SCREEN (High Res too!) HERE. You might have to adjust your Bass a little though as they don’t seem to do the complex bass well (or I don’t!). The song is We made a Pact by Hey Rosetta! And yes, I did write them for permission to make this video with their song. Very cool Canada group. Lyrics following

Lyrics from the song We Made A Pact
You,
You and I made a pact
A deal that as we lay dying
We'd think about eachother then
And smile as we're taken in

I,
I listened like a little child
To the story of your earthbound pilot
he plummeted so violent
A parachute not opening
And rushing to oblivion
He broke into that knowing grin

And I,
I think about that a lot
Cause a lot is what i've not got
And a smile is what I least expect
In the clutches of this darkness

You,
You I was surprised to hear
Your birdsong velvet in my ear
The phone broke its silent stint
But I pulled the cord and I needed it
You billowed like a bowl of silk
And slowed me from my ruining

Why I have no spoons, and what you CAN DO.

This post is simple: I need/have to go from the girl on the left to the girl on the right, and I need your help. Read the post to understand how you can help and why I need the help NOW.

I’ve been sick/disabled too long I realized as I finally ‘understood’ what being able boded is like (wow!). So I am going to try and reverse engineer and explain the difference between MY condition, Chronic Disabilities and being Able Bodied.

See I was staring at this bottle of bath salts for several hours (when you have to move stuff along through the skin, taking a dump takes a bit longer) and the bath salt bottle is 80% full. And I realized, “This is what the energy of an AB is like.” And you know what is amazing? They can use it, spread it here and there, do things literally 10 to 20 faster than I can (like leave the house in 4 minutes compared to my 105 minutes) and EVERY day, it get completely refilled again. Amazing no? And this is the kicker, the MORE active they are, the MORE energy crystals they get. That’s right, empty it completely and it ends up FULLER! Wow. To me only two years later, that is pretty amazing. Able body people have a pretty sweet life.

Now there is spoon theory, in which you accept your illness or disability and that while other people get say 100 spoons, you only get 40. So people have to learn how to stop trying to keep up with the 100 spoon people and live with 40. And if you overexert yourself, and use like 45 spoons, you will pay a penalty and have to be at 30 spoons until you work back up to 40 spoons again. That is for STABLE chronic conditions.

Okay, now you have ME, and I have not just one but MANY degenerative conditions. And this is important because according to the books and most doctors I will die. But unlike cancer which progresses in a particular way, changing cells, taking over the lymph system and overloading a crash in a time which has been seen thousands of time (but there are still exceptions), my progression is so far, random. And so, if I don’t “GET” the difference between ME and the “Spoon Theory”, I will die. I have not rested. Part is because no one has adjusted to me being sick or broken on the level that I am: so from home care, to Linda to others, I am asked to expend energy which I realized would put me in the hospital by the end of the week (not that I wasn’t helping by working until 5:00 am). It is hard to rest when you look the same. I said earlier this week I would end up in the hospital, and today I came within a minute or so of doing so.

Okay, AB’s get 100 lines of energy crystals, and person with condition X gets 40 lines of energy crystals and when they wake up, they have those crystals magically reappear. I get 20-30. The problem is that in Spoon Theory, when people allocate their spoons, whether disabled or able bodied, they don’t have to factor “How many spoon to keep breathing?”, “How many for my heart to beat?”, “How many to convert oxygen?” See, in Spoon Theory, which is useful for certain conditions, it is assumed that BASIC functions will not take energy. So breathing, heart beating, ability to circulate blood, drinking, swallowing, eating, are all not counted. But they DO have to take control of their life, making conscious decisions because those have real consequences. So the question becomes, “If I go to the store today that is 15 spoons and making dinner is 10 spoons so I need to rest two to three hours after each activity.”

With my condition, I don’t just have MSA, or hypothyroidism or anemia or a currently unidentified autoimmune disease but OTHER diseases too. Plus I have, thanks to the destruction of most nerves, no feeling. I used to be ‘in tune’ with my body but now, until the time when my heart stopped beating (as it did today) and I said, “Something feels wrong” before slumping over, I don’t have a clue that golly, I must be overtaxed. And due to the extreme nature of secondary diseases like Raynauds, it is both unclear to caregivers what has caused me to slump over: Have I stopped breathing, has my heart become so erratic that it doesn’t beat blood to my brain, has my vascular system decreased, or have my lungs stopped converting enough oxygen to feed the brain, or am I simply completely exhausted? Actually, right now, typing this paragraph, I slumped over, and it was determined that due to one hand being blue, I needed oxygen and now I am on oxygen. I woke up and continue.

So what conditions need to include counting ‘spoons’ for simply TALKING. I do. And if I use my 30 lines of energy down to eight, well, I might still be able to do stamping on postcards, but my heart starts get weaker and weaker until I have to be hospitalized. And if I talk in the hospital, alarms start to go and they have to stabilize me again (that really narks them, having to do that four times just because you want to tell a really good story!). And after a two hour nap, rest and then eight hours of sleep I might have.....14 lines of energy.

And of course, at any time a seizure (one of the only symptoms where care givers know what it is: hey, she’s having a seizure! While my arms turning purple up to the shoulder or hands turning black, can be up to six different reasons) can come by and steal half of my energy. Or my heart can go out of whack because the autoimmune disease in my brain decides to attack that part, and I lose energy. So there is no “spoon” theory. Right now, there is survival. There used to be a time where exercise used to give me a boost of 10% over the course of the week, now it just takes 20% of my energy for the next four days. Maybe if I can figure out how to get back UP, I will have a fighting chance. Because if I don't then I won't. It is really that close now. It is change and maybe not die (now). And I need help.

Right now, being absolutely still, not answering emails, not doing blogs, just watching DVD’s on my computer is actually the most healthy thing for me at the end of the week while a well rounded schedule of going out and doing exercise once a week, a bit of wheeling and living my life on the computer, actually is knocking me down. Now, I am NOT going to give up all my contacts and my friends, because I believe I can slowly get a bit more strength AND put a limit on my computer and other activities until that occurs. I HAVE to accept that I am now the girl who sits buy while other people do things for me, like it or not. Becasue we can’t tell how strong I am because I look pretty much the same, except now; not I not only am I NOT the same (as last week, last month, or even yesterday in terms of energy and safely staying alive), I am in CRITICAL condition. This you need to know.

Today I went out and fed squirrels and I look, well thin, but like Beth. Great, yeah!?

No, not great, I got 2nd degree frostbite and in trying to warm up my hands, I passed out, stopped breathing and my heart got very, very weak. The problem is, do I have enough energy to leave the hospital once I get in? I was revived and given liquids and oxygen in case it was low oxygen, low lung conversion, anemia, or a few other things. Since then I have slept 3 hours, and eaten twice and passed out twice more, had numerous seizures and I still look ‘normal’, it is just, if I talk for more than three minutes I will pass out. I will become emergent (in fact right now my fingertips are black and I am ON oxygen). And tomorrow…I will be weaker. When I am nauseous it could be anything from lack of liquids, to vascular system out of control, to inability of blood to reach inner ear or even anemia. Care giving me, and being me is a chore.

Ah ha! And this is where you come in. Because I have decided with help from Veralidaine and Wendryn come up with a plan called something like: The Helping Beth change her behavior, outlook and not die plan (THBCHBOANDP for short!). Basically I need a few volunteers who are willing to take on individual aspects of regulating what parts of me CAN be regulated from afar. The two words I am told for caring for people in my type of condition are consistency and stability. So, I need to change within a framework that is consistent and stable. On my end I am TRYING to convince my care workers they aren’t prison guards but CARE workers. I am working with Linda and with the worst offender – ME.

But what I need are a combination of sponsor and older sister/brother. Someone who HAS the number of spoons to keep an eye on me regularly and wants to. Admit it, deep down, you KNOW that if you just had the chance to tell me what to do, my life would be better! Haha, you older sibling you! So you can either volunteer here in comments but only if I have your email, or email me because we will need to email each other. Or you can email me. So for example, I am working trying to keep my life stable, while working to rest more and move toward positive emotions. So, and this is going to be not HARD but a little bit of commitment, sort of like feeding fish, but luckily there was SO much boring medical stuff no one will get this far down to hear me being so selfish as to ask for help for a subhuman like me.

For example, I will need individuals who are willing to send me post/mail at a REGULAR interval (consistent and stable!), whether that is every two week or every month, it can be put on a calendar and I can hopefully learn things like ‘anticipation, excitement, looking ahead.’ Yes, this is an actual need.

Another thing I would like to do is spend 30 minutes at least three times a week writing thank you cards or sorting postcard project postcards and stickers. I would like to do that as I have a backlog in my brain box (how I know things sent to me, put in a box in sequential order), and I need to organize the postcards. BUT, if I do too much I will get exhausted. On the other hand, it gets me away from working on the computer. So I would need a sponsor/older sister who would email back and forth with me and find out what I have done, and have I done my 30 minutes away from the computer yet this week? How many thank you cards have I done? The same is true about reading, I want to try and just READ, or at least read manga if books are too hard for 30 minutes three to four times a week. And so I could use a friend, a sponsor/older sibling for that. But see, this means you have to be consistent and stable too. If I miss a week, if I lose contact, I get lost. I am hoping to build up pride in my work, reinforced by my sponsor.

People asked what they could do, these are some things that need being done. By the way, Linda’s one cent plus shipping romance novels (duets: two books in one) have all been read so I went through with her and added some more; if you want to give the main caregiver a break, that is a need, which is quite inexpensive. I also need between four and six people who are willing to commit to $20-30 every 2-3 months. See, I get postcards and supplies from David at his online business for funding the Japan Cat Project. I make an order of about $25-30 every two weeks, which is between 3-6 shitajiki boards (pencil boards) which I then give on as gifts. So if there are some people who want to commit to this, as long as I live (or get rich or find some amazing job), then I will know that about 25-50% of the postcard aspects of the postcard project costs are taken care of. So that would mean four to six people who say, I can do that, and then we can email and arrange a schedule and either use paypal or Amazon.com gift cards. I’m sorry, I have tried not to ask for money on this blog because that is not what this blog is about. But it is about my health and I don’t have the heath to do the chasing online for anime postcards anymore; this man has volunteered to help me. If I can make that CONSISTENT and STABLE, that will reduce my energy, energy I need for breathing and staying conscious. By the way, the same is true for a sheet of 42 or 94 cent stamps. We are okay on .27 but anything oversized needs a .42 cent stamp, and if someone wants to send a sheet once a month, that is a real need, as are all the people in Australia and New Zealand, South America, Africa, and India, Asia and Japan. So if someone wants to commit to a sheet once a month or once every two months, that is a need that I don’t need to worry about. What I am asking for is a mixture of older sibling, sponsor, caregiver and in somecases guardian, keeping a kind and gentle eye on me. Not to run my life, but to help me, as limitations increase, including my mental ones, to live as well as I can.

If someone wants to work with me to ask me what I watched that day, or how I rested, that is something else I need, but that might also include involvement on your part. Same with things like, am I drinking enough liquids. Look, no one wants 20 nags coming after them every day. But what I do want is to change how I live my life with a group of friends who care about me and are there to hear a few lines to say, ‘yes, I did have my two gatorade before my nap. How are you doing on your project X?” And at the same time they commit to $5 a month to go out and have something NICE to drink like BEER instead of always gatorade. That’s a sponsor. If the money is an issue, I can actually SEND YOU the money. But see, I won’t remember this plan in three days. You will. So if you tell me I have done a good job and you are sending me $5 for going out for a beer because I drank all my liquids that week; that will be something to look forward to (and I won’t know it is my money by that time!). IF the money is the problem.

The problem is I need a fast life change which has to be intensely monitored but as stable as possible. So I can rest but also start trying to change and have joy. I can’t change one life aspect without the others. I found that today. I went to see squirrels and I passed out many, many times, and was in bed. So going to see kitties is a plan, but it isn’t enough. I need more, a complete life change so that I can go see kitties in a week because I have had friends watching over me, to help me rest enough, relax enough, feel human enough, learn to have excitement and joy to go and see kitties. The health, the emotion and the rest all go together.

I want to live. I am asking you in a concrete way to help me do that. And if you have additional ideas of how to improve this idea in various areas, I’d like to hear it! As for me, as soon as I am done this, I am doing postcard matching! Don’t worry, I sit still and as three of us we go over the names and find the best postcard we have, put the label on and get it ready for stamping. Because this is a cold and hard winter. And people need to know they are cared about.

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!”