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

This is now: survival, eating ashes and going on

A picture from last night. My head resting on INDY’s headrest I am passed out and not breathing. I am wearing a eye-patch as during my conscious states my eye finally had opened but the image had not integrated in my brain (just garbage). I am my sleepwear, which I lived in much of this week. On a 3 or 4 setting of oxygen and ‘Rabid’ my squirrel is on my lap. If you want to know why I call the squirrel ‘Rabid’, he tends to vibrate at very high speeds, is easily bored and well, look at those EYES! My fingertips are purple and my entire arms and torso is in secondary Raynaud’s (I lost consciousness due to lack of oxygen in the brain). I had pushed the panic button because I could not call Linda, without oxygen to my vocal cords. My heart had just stopped long enough to cause a major problem of loss of oxygen to my system, and I would soon need reviving, so I pushed the button while I could.

People see me with squirrels. People see me doing things like going to lava. And yes, my hair is falling out and I look like crap and I am visually ill an on oxygen but I am still out there doing stuff! Right? Wrong.

From ‘Anticipatory Grief Package’: A Patient’s Perspective “It is important for people to pace themselves and save their energy for the activities that are most important to them.”

I spend 99% of my time looking like this (the unmoving paced person), feeling like something scraped off the side of highway that stinks and sticks. I am in INDY, supported in my back and body by the Wheelchair INDY or the hospital bed, with head support. I do that so I CAN send postcards, and so that I CAN send emails and packages. I am now in constant oxygen deprivation, low saturation levels and so I have to focus and stay focused to get what I want done. Like blogs and like going out and feeding squirrels. This is my life.

“Loneliness increases as family roles change and the patient becomes more dependant on care.” Well, why don’t I continue as I was in Hawaii? Well first off, I didn’t have much longer that I could have lasted in Hawaii, and have been bleeding from somewhere, nosebleeds, spontanous bruising, anal, oral, lung bleeding ever since returning. I hope to build up reserves, and I am happy I went to Hawaii but there was a calculated cost beyond the financial (which cleaned us all out). This is another picture of me, here, I am not sure, maybe in pre or post seizure as my eyes seem open but rolled back. I am on the face mask, continuous flow oxygen at maximum with a ‘rebreather’ mask to increase the percentage of oxygen. See, I could BE in Hawaii because I had two people to bring me back from the edge of death and they did, they did many times a day. I have permanent damage from the trip, and I am LUCKY to have it limited to the areas it is. It was a great trip. But when I only have one or two hours of care a day, then trying to be at that level of activity is a good way to fall over due to lack of oxygen and stop breathing. And when Linda comes home four hours later, that is still how I will be. I know that because every week, even without 24 hour caregiving, I still have to be resuscitated or assisted in breathing, in stopping a seizure cycle, in regulating my heart about a dozen times a week.

You, the reader, you get a massive pain spreading across your back, or in your chest, it is hard to breath, it is spreading down your arm. You look down and you see a hand that has purple fingertips, and now blue fingertips and purple to the first joint. Someone calls 911 and you go to the hospital. This is a MAJOR event in your life, this is a heart infarction and the next one is going to be if not lethal, then will likely trigger a stroke. This is an event people often experience ONCE in their life. When they die.

I experience that almost every day.

After the squirrels, after the nice pictures, and the eagle, when Cheryl went home; I had gone without much sleep and pushed myself without reserves. Not low on reserves, but no reserves. So my legs stopped, and my arms. I sat there in INDY and waited for wetting myself. Linda was exhausted, my fingers were dusky and turning black, my thumb was black, my palm was black. That is how bad my circulation was. Linda got me into the bathroom and on the toilet. I had retention (I was too weak to trigger the muscles to allow me to pee – if you are older, these wear out and you pee yourself, if young sometimes, this happens, you are stuck, until it backs up into your kidney). Linda was too weak to be able to move me. “Beth, you have to help, PLEASE, please.” she begged me.

I couldn’t. I couldn’t move my legs, my hips, my arms. I was barely hanging on to conscious. I had been expending energy to hide the amount of care I needed. Part pride, part love I thought. Now I wondered if leaving Linda with an unrealistic idea was love or not. And when the reserves are gone, they are gone. So, I am stuck on a toilet, she is exhausted. What now?

She went and slept. We had, she had, NO ONE we could call. My parents response has been a combination of distancing and pretending that everything will work out so long as they don’t see it. We were alone. She gave me a drink to drink and when that was absorbed in 20 minutes I had enough strength to help drink the rest of it. Eventually I peed. Two hours later, she was stronger and so was I, and together we got me into bed. We also used a word to look into: Sling.

The amount of energy that most people expend making a nice Sunday breakfast is what I have for a week or half a week. That’s why Linda takes pictures of what I do. So, yeah, I’m really ill. REALLY ILL. Now does that mean that Hawaii was it? The last hurrah?

No.

I am a calculating and ruthless bitch. Because my opponent is Death. Death feels no remorse, no feelings at all. There is no sorrow at taking me too soon. So what if I want what other people have as a sign of adult: understanding mentally, a job, goals, dreams, friends, to be treated as an equal? So what? If I ever miscalculate and I have, and Linda or some person at a place where I am usually banned afterward catches me, and I end up in hospital and that’s a mistake I can’t make again. So it happens right now I have minimal medical care. But I have oxygen and pills. I have a computer and wheelchairs. Sometimes I have both eyes, sometimes just one. It is what it is, and I have to win anyway.


So if it takes me 40 minutes to get out of bed, and it does, most days, takes 10 minutes to get a hand moving and under control, then that is what it takes. And if I miss the wheelchair, then I drag myself. Because that is what it is. This is it: life. There is no replay, there is no retake. If I want to live, then I have to keep going.

Most of the time I grin when I am in pain like when your skin is peeling the next day from a bad burn, a real bad burn. I grin because someone just told me that “Oh you won’t be able to take your wheelchair...” As I roll past them. The amount of times I have calculated the odds of just surviving getting to my pills in time, something like using up three days worth of energy to show some AB person who articulated that I must live in the box is nothing. It is so nothing, I give it a fierce grin.

I think back to Fredrick II, or ‘Fredrick the Great’ in Prussia, who grabbed Silesia from Austria, starting wars lasting 20+ years and resulting in the ‘Seven Years War’ which pitted the small Prussia against France, Austria, Russia and every other land power. Fredrick, one of the last great leaders to fight as not just the King but the General, in the field of battle, faced odds of 2 to 1, 3 to 1, French Armies, Austrian Armies and he won. Because he had to win. If he lost a SINGLE battle his small country was not doubled in power which Silesia would do, but lost. Only Britain was helping then financially. In 1759 it seemed that everything that Fredrick had fought for was lost. 47,000 Russians beat 26,000 Prussians; the French forced the surrender of Prussian Troops and Fredrick lost half his army in one battle, his worst defeat. He considered giving up and abdicating. I consider giving up. Giving in to the pain. Not coming back when they push and prod me to ‘breath’, and I start to follow that, but I do come back.

Fredrick considered suicide. And looking at what kind of death I have in front of me, I consider suicide a lot. It is not pretty, in the same way I am not pretty. I was never beautiful, but I was pretty, a strong woman and cute in my own way. But I won’t look like that again, I won’t be getting stronger. The arrow has pierced my breast, the saber is thrown from my hands. I was looking at pictures of me fencing last night and my goodness the power I had. Fit and strong. But that was then. Now I am mortally wounded. And so that is where for most the story stops.

I am not most. Nor was Fredrick. He went down among the people, and raised another army. The next year at odds of 3 to 1 Fredrick won, but the battle raged on, literally the entire continent of Europe was against him. And in the next year Prussia lost its last port to the sea and thus help from the British. Everyone believed that Prussia’s end was here, the army down to only 60,000 men. And then…..again, considering suicide, Fredrick found out that the Empress of Russia had died and Peter III ascended. Now Peter III LOVED Fredrick, because Peter III thought he was like a hero from a storybook, and in many ways he was. A King who risked everything for his nation, who every year took on the worst attacks and won, who faced the worse conditions and when it seemed that wounded in so many areas, Prussia was done, Fredrick went to the countryside and showed the people that THEY are Prussia. And he rose again, in front of a victorious army. Peter III withdrew the Russian troops and got Sweden off Prussia’s back and so Prussia took on and won the Austrians and French. It was the miracle. A miracle that had been hard fought for.

This did not last long as Catherine, Peter III’s wife (know later as Catherine the GREAT) thought her husband an idiot and killed him, then ascended the throne and settled the war, having everything return to what it was BEFORE the war. Prussia remained, Fredrick remained, and Silesia was part of Prussia, part of what would become Germany.

So, some interesting history, so what. The so what is that in two hours, after spending 4 hours with a doctor, and up late last night ill, I am going to badminton. Because at badminton I sweat, and if I sweat another week. I live. Or my chance of long term living increases. My chance of going to New Orleans increases. And heaven those, including the parts of myself screaming, “No, no, let us rest!”, heaven help those who try and stop me.
Because I haven’t exactly got over into ‘acceptance’ yet in the grief cycle.

One of the reasons I was at the doctor was medication, including more heart medication (we are now MAXED out Ms. Heart, okay?!) and florastor, my probiotic which is a prosthetic intestine for me. We are down to 12 days of florastor and then, though I am malnourished, I will have no way to absorb nutrients. That is on my wishlist. And unashamed so, because if I have to beg in the street…I have a cup. Yes, the needs seem high now: another wrist support and a book or something for Linda to have down time with. Linda, who alone, waiting for the help from Beacon and VIHA has not had a night off in over six months. She is always and ever there for me. I wish I could cradle her. I wish I could give her rest. Give her a weeks vacation. And I can’t even give a book. We need wireless phones (because sometimes like I couldn’t get off the toilet, I can’t get out of bed to let the ‘caregivers’ IN), Linda is figuring out which ones, and then they will show up on the wishlist. By Nov. 2nd, I have to sign up and I am signing up for Boxing because the longer I sweat, the more my skin, the largest organ in the human body, heals. And I need that. I am also signing up for badminton and volleyball. I have no money to sign up with. We found out today that I need to get oils, as my body can absorb the oils of the vitamins it is malnourished in having while it cannot absorb the vitamins. Boxing is $55, Volleyball is $45, the oils I don’t know. To some it may seem little to some it may seem doable, this week it is…….yeah. If you want to help, go to the blog, A Girl's Gotta Fly and email Linda. Because I can't REMEMBER, I don't understand the math things that well so she does that, and I try to focus on the surviving (and the flying!). So you can email her over at Girl's Gotta Fly if you are interested.

I am hoping, but I am not asking. I would if I could ask for help for Linda. Help her, but I don’t know how. Come over and watch me for a night, help me with my pills. But that is impossible for most if not all. And for money, I know how many people are having tough times. And look at me, I just went on vacation (a vacation that extended my life from months to over a year - survival). And in time, I will have resources. But now I don’t. I have no income and no health to generate it. And yet, I sell on Amazon, I will sell on ebay, I will create a nest egg and have that emergency money. It is just I kind of used emergency money on loot for people in Hawaii (I was one of those people, I admit it), and then with Tall Girl closing. I would not have the PJ’s in the picture at the top if I didn’t go and get them at the sale, that is how little clothing I have. I am using the same shoes I had when I was fencing.

Enough said on that, because I think I know that those who understand realize I am grateful for friendships, for all the forms of giving, which include even reading and try as much as I can to reciprocate, because that is what friends do. I just know that I am going tonight and I am going to boxing on Monday, I just don’t know how. And I believe that in a week or so, I will be able to eat because I have the probiotic and oils I need. I believe that. Because if I don’t live, then I can’t do what I am meant to do, which is be there for as many people as I can, as many as my energy allows.

I die, I am brought back, I am wounded and bleed, I am in pain and struggle, spending so much energy to survive so that I might sit still and save the rest. I save it so I might spend my energy on others. Making sure that the others who feel the ‘alone’, others will have some way, some hope to get them through the winter. And I will help them find that. I will be with them. That is the other 99% of my life. Surviving on the edges. And sometimes it means eating ashes, like sitting on a toilet waiting for someone to be strong enough to lift you. And sometimes it means dragging yourself. And sometimes, it means getting a letter saying, ‘Your letter/gift/emails made the difference……’

Oh, and I WILL get to New Orleans.

I have a corset, red panties & pose threat to population...also have a GP and the H word (maybe).

Am I in good health? No, actually I am probably in the worst health for a good long while. Cheryl and Linda are rather pissed at me because I keep passing out. I am not sure why they are pissed about that; it is not like I PLAN it. They say something about how I keep talking or doing things until I pass out. Well, sure, who wouldn’t? I mean, if my body gave me a timetable of being unconscious I could get a lot better in scheduling so I was doing stuff and then simply lying waiting for passing out, reading a manga maybe. I think the idea is that I should be reading manga and resting. But there is too much to DO!

I mean, while yes, I do have to go to Booth Gardner, I got my new corset by post today and it is medium junior and a little bit MORE medium (aka, smaller) than the last one I got. So did it fit? Well, the joys of the corset and the female form is that with enough will power it always fits (Cheryl said, ‘well, there are just ribs, I guess it isn’t going to fit’ – I thought, “That’s what you think” – two minutes later it was on). It looks very shapely if I may say so myself, although having a necklace of smelling salts might be prudent. Haha – I brought extra corsets in case I need to change!

Oh, sorry the big news is that I, Dr. Elizabeth McClung was TOTALLY WRONG. Yes, and it has give me a four letter response. After I talked to the guy (Dr. I.) who thought that female doctors’ were the reason (besides Jubilee being the worse hospital in Canada – his statement not mine!) health care here is crap for the chronic and terminal. Dr. I, said OF COURSE I had Lichen Sclerosis. However he was too busy to look. So I had to come back the next morning to the new walk in clinic in the village to see Dr. J. I told her I had Lichen Sclerosis and she said, “No you don’t.” I said, “Well, it might be Lichen Planus.” And she she, no, that is actually more common here, and she indicated the front of the shin. Of course, I am having this conversation sitting up facing her, with my Victoria Secret RED panties (go out in style!) at my ankles. She said, there is a very distinct discharge with Lichen Sclerosis.

I told her I HAVE a discharge, I have anemia, I have Progressive Anemia, I have a thyroid problem, I have an auto-immune disease ergo, Lichen S.

She said, “No, what you have is a severe hormone imbalance, and the discharge you are talking about, that brown on, it is dried blood because your skin is membrane here and bleeding out and your labia are fused and anytime you stress it (like say, taking a dump) you bleed (combined with pus and other fun stuff maybe dead white blood cells).

I said, “Oh.”

She said, “You have a severe deficiency in estrogen.” I explained I was already dealing with imbalance with pills.

She prescribed a cream. And I went, “OHHHHH!” and sank my head in my hands. She took this as a form of humility I think. And started explaining something. Actually, I was going, “Why have I been so STUPID!” (yes, it is possible to be a genius, catgirl or BOTH and still blow it!) I have been asking myself how I could be losing 1/3rd my weight while eating while Linda does and just sitting there, no exercise. And when you add in the hypothryrodism…..? Except I need many probiotics to try and absorb nutrients and I have been wondering if things are being broken down in the stomach at all. Wondering what if all is being absorbed. And I have been taking my estrogen supplements…orally! And due to Dr. Jimmy, no checking of hormone levels in like a year or more. Get the “OH!!!” Yes, I have a deficency and the hormones can’t get there. A cream is better, a cream solves the problem!

I asked her if the skin would thicken up. She said she believed so. I asked what about my hair, it was so thin and falling out in clumps. She said to wait and see. Here I had been complaining to Linda that with my breasts reduced in size I was feeling…..well sexless. I had been having dreams like that. With last recording of Androgen at 0.0 and two doctors looking at me going, “You have a severe hormone imbalance, and a estrogen deficiency.” It makes sense. I will put on the cream. I will see what happens. I have hope.

Of course, there is a problem that with adding all sorts of hormones to me, there could be a slight period of adjustment, where I have imbalance the other way. We have to hope for the local population that this does NOT happen. They need to get the correct level quickly for everyone’s safety!

For me Booth Gardner had three options, a) they tell me that it is all in my head (hey, I’m female: we must have tremendous brains for all the things we can have in our head from M.S. to CFS/M.E. and Fibro!), b) They tell me I am going to die or c) they tell me they don’t know. What this has made me realize is that I do NOT know ALL of the options. That as much as I like to think I have worked out all the options and that I am stuck here in a medical tower, far from help. So maybe that isn’t true (the trained crows who do my bidding are true however!).

I realized that like this woman who I asked, “Why do you KNOW this.” She said quite reasonably, “Well, I have seen Lichen S. and Lichen P and this estrogen deficiency (usually in the very young, the adolescent and the older but still, very distinctive). I told her that was the same grouping for Lichen S. She outlined the difference she had seen in her 30 years of practice in Portland, OR. Oh. Okay. Wait, Portland, like the USA? I asked her if she believe in treatment based medicine? She didn’t know what I was talking about.

I told her I had hypothyroidism but I couldn’t get a referral in order to…she interrupted, “Oh, I can give you syn-thyoid.”

“You don’t need to refer me?”

“No, why would I, vagina’s and thyroids I am very good at!” She wasn’t so great on complex autoimmune diseases, however the owner, Mark, who works in Vancouver and is over once a week is VERY interested as is an older woman doctor who seems to have a fine point focus and we spent 20 minutes talking details and she left saying, “I could talk about this forever, but I have patients.” They renew prescriptions. The Admin person help Linda get the MRI recording of my brain for Booth Gardner. They invited me to be a patient of theirs. I signed up. I now have team of 4 GP’s to return to.

But more important, I realized, as I talked to this very competent woman who worked in Portland that the doctors at Booth Gardner could come up with an EQUALLY logical and reasonable explanation that I have simply NOT THOUGHT OF. Of course, I am on a rebreather mask, and have 70% heart erratics now both showing central autonomic function, I also can’t feel my feet and have loss of nerves in my hands and have overheated 5 times today showing peripheral nerve damage. Even MSA people go, “How is that possible?” I don’t know!! I just live the life. They say autonomic failure and you have either cancer or the PAF/MSA group. But see, I could go in there and they could tell me something logical I never thought, like for example that I am B-12 sensitive, and my initial B-12 deficiency created pernicious anemia which destroyed peripheral nervous systems. And now, anything like my current anemia triggers it to restart, which is why I am losing more now. That is logical and something I never thought of; and they could say they have seen it X number of times. And maybe they have an explanation for the central autonomic failure. I don’t know. But maybe a treatment and maybe I will come home and not feel like a little pawn on someone’s large chessboard where I was the medical pawn everyone was desperately trying to forfeit.

Maybe having that four letter word: hope. Maybe it will make it all the harder if they say what I pretty sure what they will say. But I am not just going now for pain control (my Portland GP can do that), or other things that a GP SHOULD be able to do. Either way, I will leave there knowing my future. And I DO have a future; 8 I am going to Sakura-con, I am going to do the Times Colonist 10K, even if it takes me 2 hours, I WILL do it. Because I have a future; even if it is counted in weeks or days; months maybe, it is STILL a future. But now I have hope: hope that I will for once be ORDINARY, that I will be the ‘easy case’ because they know what to do. And I will have an anniversary of this day; the day my future grew, like a sunflower, high to the sun.

I'm clearing out things of a loved one who died

Sunday, I had to work a couple hours on sorting and getting rid of the clothes of someone very dear to me who had died. That is what you do, sort out the clothes, these were brand new and so going to a consignment shop. The person who had died? That was me.

When you are tall, if you find something that fits particularly well, like jeans on sale, you get two; so a piles of $100, $125 jeans, tailored suits for when Elizabeth was going to teach or do her government job, brand new sports hoodies and training outfits for her cross-training. All taken to the consignment store. Clothes I had bought, had wanted, and yet when the season came around to wear them I was already ill.

An acceptance of the death of a type of Elizabeth: that I will never be size 13 or 14 or 15 again. Because I won’t be walking or hiking or jogging. That the Dr. Elizabeth, teaching courses, able to be consant in her ability to take on a course load of teaching and marking, is dead. Elizabeth after 14 months of trying to get a job and finding that in a place where there is sign for help in every other window and hundreds of jobs advertised, that they are all full time. And that every job she has applied for, she’s never been shortlisted. Because as someone said on the CBC news website, often the cost of accommodation (which isn’t legally required) just isn’t cost effective or worth the effort of hiring someone with THAT level of disability. But I didn’t have time to grieve. I grieved in part today, when I cried for 45 minutes straight.

There are two parts to my illness; the emotion and the physical. So with some pain control my emotion side was able to pluck up, though I have never hid the physical since point number one of why I WANT to live is that everyone with my disease has died. Most of the posts of why I want to live are the emotional reasons of why I want to live. Yesterday’s post number seven was an example of what has gotten me emotionally TO where I am, how I survived in extreme pain, in times where I had multiple medical appointments and test for WEEKS without a break. Where I would have to go from recovering from a seizure, be plopped into a wheelchair and driven to the next test, which would exhaust me further. Surviving was in postcards and planning surprises, getting mail, all making me believe that I was not alone, that I was not without worth and more than just a human experiment. I could spent what energy (and funds) I had looking for neat things on line that someone might like. These are what kept me from killing myself.

Physically, I am worse off than I was last week, last month, last 60 days, last year. Physically, at current progression it is hard to imagine me being here next august, must less trying to figure out what exact state I might be in if I am still here in December 08 (maybe 24/7 oxy and hospital bed?). My emotional ability to come up with reasons to live didn’t magically give me twice the energy, didn’t really stop the fatigue, or stop any of the serious conditions for which I am still untreated. And yes, no one in the 108 years since what I have was first noted has lived more than a few years. And seizures are part of that, of the three types, I am C, which is central autonomic failure and seizures are on the list of progression right before ‘end stage’. Because I bleed into the skin under my hands, into my feet, into my arms (confirmed), and yup, into my brain, or so the theory goes. Which is medically bad news.

Sure, I have hope, my hope is that I get diagnosed with some autoimmune disease speeding my progression, that IVIG or another treatment is started, that it works. The fact that I cannot feel the pain because Lyrica works does not mean that the peripheral neuropathy does not continue to advance, that all the systems choking, or failing do not continue to do so. Simply because you have a shot and can’t feel the side of your mouth where your tooth is rotten and your nerves are exposed doesn’t mean that the nerves are all better. My hope is that I live, in this state for a couple years. Unless treatment is started soon, another month of degeneration will mean my state of being will be MORE dependant and more at risk for sudden death. Every month without stabilization means that.

I said I post my surprise packages in the summer because there is no December. That hasn’t changed. I will never be able to take a trip like Japan; I will never be able to start most sports because my body is simply too frail. That doesn’t mean I don’t WANT to live. But that also means that I have to accept that things are never going to be what they were, and that includes last month, the last three months, last six months. So I have to grieve for the death of those Elizabeth’s and move on. Because I want to live. And everything medically tells me that isn’t going to continue happening for very long.

So I keep trying, and I keep thinking up new tricks, if and when I can but that is it. Yes, emotionally, I am back, I am ready to try and care about life. Physically, I am dying just as fast. A nurse is coming for a health evaluation, a dietician is coming for weight loss and I am on the list for barrier free housing because this wheelchair that is coming is my “last chair.”

And I need the housing because this chair is coming with modified hand controls which as time progresses will be moved to head controls. But I need to be in a place that has tracks in the ceiling to move my body around, as my nerve death continues, and the weakness continues and I cannot transfer myself. Then it will be time for the sling to move me into my chair, or to the bath. So we are applying for the housing. If we don’t get that in time, then I will likely have to move into a hospice or a home….by myself. They don’t do couples living there, at least not here. So adapted housing from a charitable organization is our next goal.

I still WANT to live. But that is what I spent yesterday and today doing. Now I am going to work on postcards, and later on packages, while I still have some hand function.

This week they are building shelves by my hospital bed so some of the gifts and cards I get can be moved there for days I don’t get out of bed. That’s why my number 1 new goal was to get out of the building four times a week, not seven.

I am glad that my pain levels are less, it means I can plan more. But I am not going to storm back against the gates of mortality. EFM WILL die. But (with proper pain control) she will try to keep living at the limit of her possibilities until that happens.

Decided, 'going to live': 15 reasons why

I had a shock today. In the mirror I could see these two huge smudges on my face, right on my cheeks. I couldn’t figure it out because it wasn’t like I had been reading a newspaper (and then putting my hands on my face). And after rubbing a bit I realized that my face had lost so much weight that with the light above, the hollows under my cheek bones were creating a fist sized pocket of shade. Actually not just under the bathroom light but in the hallway, in most lights, all lights. And my collarbones which seemed to GROW (it was explained that they didn't grow, they stuck out more becuase the skin under them has shrunk) are sticking out in sharp relief. And to add insult to injury, my little titties are heading toward itty bitty titties! I had lost weight, rather dramatically, in just over one week, eating the same as Linda.

It was another one of those moments, along with all the hair that I am losing that brings home that I am not just ill, I LOOK ill.

I asked Linda what she would think she she saw someone at work with my hair loss. She said, “I would assume they had cancer or some other serious disease, maybe if I was rude I would ask them about it, ask if they were on Chemo.”

So I guess one of the things giving me a youthful look is that I have lost 10-15 years of the little fat layers which fill out a woman’s face and cause the rounded cheeks and dimples.

And yet, looking in the mirror, talking to Linda about contacting the case manage to get the dietician to return, and what is next, how do I go about getting a tube put in if that is what I need, I said, “Because, dammit, I want to LIVE.”

I looked at her and said, “Honestly, I have put up with TOO MUCH SHIT to just go ahead and die.”

She said with a little laugh from being at ALL those tests and meetings from the last 16 months, “Yeah you really have.”

“So yeah, screw the dying.” I told her (can you tell my pain levels are less?).

I had several partial seizures during the night. My super painfull, super long day didn’t magically turn off when I slept, I guess but the seizures started. I actually woke up during one when my right leg and arm were going crazy, and then just sort of thought, “Oh well, that side never did cooperate” and tried to go back to sleep.

So today I cleaned out the blood from my nasal cavity (After a seizure there is always a pool of blood in my right nasal cavity, we assume it is from a spike in the blood pressure during the seizure). And I tried to come up with some reasons on why I am NOT going 'gentle into that good night' (seriously, that Lyrica is the BOMB, I can actually think positive thoughts which don’t include burning doctor’s cars). So here it is:

1) No one has ever done it! No one has ever survived my condition, which means that the longer I stay alive, the more “I win!” Admittedly there isn’t really any competition because I assume most people who have this want to live, but since no one else HAS managed beyond a couple years, then living is doing something considered impossible. And doing something considered impossible is what I specializing in attempting.

2) Once I decide to live, then I will have all my willpower to put toward breathing (which is troublesome), particularly if my pain is controlled, as I don’t have to keep trying to escape that (not breathing is a GREAT escape of pain).

For example yesterday, I actually slowed down and controlled some seizures. We were in the doctors office and I was on the brink. I could feel myself tottering, as I had lost control of my eyes, which were starting to twitch and my right hand was spasming and Linda says in this intense voice, “You CAN’T, if you go into seizure, we won’t get the Lyrica.” And somehow, I think through the pain or talking or whatever, I literally HELD ON and was on the brink, in what is called the “aura” for about 10 minutes (couldn’t control my hand so I sort of just held it with the left hand in a clamp).

Does this mean I can control seizures? No. It means that somehow, I was able to stay on the lip of a partial; most of them are like hitting a concrete wall at high speed. A grand mal is a "wham bam and 'no thank you' ma'am" which leaves me fingerspelling upon waking, "Where is that truck which hit me?"

This particular seizure was a combo of pain and fatigue and lack of oxygen and somehow it was one that builds (I have those, they start in a limb and spread, and spread, and spread).

Just in case you think I am some Will to Power dominatrix, I had a seizure this week and had use of two fingers and my thumb and DETERMINED that I was going to drag my body to where I wanted to go….with my two fingers and a thumb. Linda just watched with mild amusement as I pathetically am busy scratching on the carpet willing my body to be dragged. See, just because I can move the fingers, that doesn’t mean I have strength in them, nor does two fingers move an entire body, at least not mine.

3) I want to see Season three of TV series Bones. I promised Linda I would watch season three of Bones with her, and if I don’t live, then I won’t get to see the episodes of Season three with her when it come out on DVD (no TV remember!).

Admittedly, trying to live until the final season of Lost does make me want to STOP breathing (Does it EVER end? Does it ever answer any questions, like why is the Pirate ship there?), so I will focus on programs like Bones, Supernatural, and NCIS for motivation(I LOVE the women in NCIS, Abby the tech goth girl because when I watch with Linda I get to play the “I have that, it is from Demonia! And that is from Morbid Threads! I have that corset, I wore it last week!”; plus the most deadly person on the NSIC team is a woman! The female Mossad Agent David (really a female!) who they keep screaming at, “No, no, we want to keep this one ALIVE!”). Plus there is all the British TV murder series and Dexter, our cute sociopath who is sort of misunderstood (season 2 out soon!). Plus the fifth season of The Wire is coming out and looks to have the grit and reality of the first season. Yum! So yes, I am ready to be intellectually engaged, to be entertained above the normal (which now seems to be reality shows and beautiful people being constantly neurotic and talking about it…..so does that make LOST a reality show?).

4) Writing. I want to go back to what this blog was about, promoting me as an interesting person to read, but also a person who is a writer and a researcher. I want to write that Part II post about gender, social pressure and the results on children who chose gender variant activities. I want to write that book, get it published and go to a fucking book signing and see someone show up and say, “Hey, I really like your blog.” So I can say, “I’m really, really sorry, I honestly don’t swear that much in real life.

Let’s face it, if I WANTED to talk about doctors and a dysfunctional medical system endlessly, I would have gone to medical school or done my doctorate in THAT. As much as I appreciate the way everyone has hung on for the ride through the “Oh My GOD, and here I thought the Canadian medical system was BETTER?”, I want to spend more time being funny, having fun and writing about that.

Come on, hands up everyone who wants to see me go out and try to do a 7K race in my wheelchair and blog about it!

See, That’s interesting. I want to take a trip and photo whore every day another 200 pictures, pick the best to post and write about it. I want to do a book, EFM (Elizabeth Fucking McClung for those just joining): The first 18 months. Or the First year. Or From Epee to Catheter (yeah, I want a title that makes people uncomfortable, does that surprise anyone?).

Sure I am going to write about disability issues, and let ask, why exactly ARE people uncomfortable with, for example CATHETERS when we have public restroom signs everywhere? When you think about it, it is really the same thing (there should be a little portable/disposable catheter dispenser in the disabled toilets along with a tampon and condom machines – hey, disabled people or PWD’s have needs too, just like REAL humans).

5) I want to petition Rick Hansen’s Wheels in Motion to actually include the “all wheelchair users” which is the phrase they USE when they raise money, but they are only giving that money out to traumatic injury Spinal Cord Injuries. Dude (see Rick Hansen is still alive and here in BC!), if it takes 10 years for someone with MS to have loss of all leg function, that is a spinal cord injury, cause nothing from down there is going up the cord, is it? And yeah, as a person who is rated as a partial quad and is headed toward becoming a full quad, the whole simplification, of if you had a tramatic break you are spinal cord injury, if not, they you are just...ill...irks me more than a little.

See I can and have run over my own foot (it fell off the foot rest, and I was shoving the tops of my wheels hard going, “What the hell is this chair stuck on!” and Linda goes, “Stop! It’s your foot!” which was now upside down with the wheel atop it and the toes half sucked into the wheel guard. And I go, “Dammit, not again”, and back up, pull the foot free and tie it down.) But no, I’m not PART of Wheels in Motion (I called them) because Rick Hansen says I don’t have a spinal injury. Okay basic anatomy lesson, the reason it is called a spinal injury is because that is the most common way and really the only way messages reach the brain. If you break the nerve cord, or damage it, the messages don’t reach the brain. If, as in my case, you have some mystery thing going around and destroying each and every nerve, you STILL don’t have messages going up the nerve cord of the spine to the brain, and you aren’t ever going to. So get with the diversity program, Rick!

6) I want to see what happens to me next. I mean, seriously, isn’t this disease just totally bizaare and amazing! First that I am still alive after all this is odd. But also how brand new symptoms/body functions just show up or disappear.

So this week it is that I can’t tell if I am peeing (oh and you can put a burning pot on the top of my legs and I won't feel it). Oh yeah, now I have seizures. Now I can’t convert oxygen. Now I have to go out in a tank top because my torso is superhot and goes into heat stroke (and coma) but I need AT THE SAME TIME to wear winter gloves because room temperature gives my hands frostbite! I mean, this is amazing! I would say it is a hoot, except all of these are really painful or distracting.

But did I think a year ago I would have an eye-patch by my bed and by the computer for when one of my eyes starts to wander or feeds my brain garbage (By the way, a good gift idea! I need cool eye patches for going out or just wearing around). Just another part of the condition.

Look, this may all be Lyrica talking but it isn’t. I have been thinking about this ever since five to seven people in the last several days said to me, “Wow, if I was going through what you are…” or “If I had what you had…” or “If I was in that condition…” which all finish with, “I would rather be DEAD.”

Know what, I wouldn’t rather be dead.

I can make myself dead any time I want, and sometimes, yeah, I kinda want it. But most of the time I don’t. And just because I have a disease that is supposed to make me die (and has made everone ELSE die so far) and that I am progressing through the symptoms like I am trying to beat the rest of the class to the prize, doesn’t mean I want to die. NOR DOES IT MEAN I WILL!

Fuck em! I may be whining and mewling tomorrow in pain and tell you from my depression that I look forward to death and that will be completley TRUE. But today, and some days, what I hope are more and more day where I want to, am determined to and am going to LIVE.

FUCK DEATH! Fuck the crappy medical service. Fuck that I have to do everything though the back door or around the obstacles. I am still alive and I am Elizabeth Fucking McClung and just because I have a slightly/kinda damaged brain does not eliminate that I am still a force of nature. But now, instead of feeding all my energy into vampires like Beacon, my GP, and this medical system, I am going to try and use the energy to come up with and try out ways to live.

There is definitely going to be a part II to this post (becuase I only made it up to 6). And please feel free to add your reasons why I should fucking live a LONG time. Plus maybe suggestions on things I might want to do with my new found determination to LIVE

I will tell you two, which will seem rather odd:

1) I want to get out of this apartment at least four times a week on my own power. I was doing it six, the last few weeks I have done it once a week. I am not dead, and while I may be dead tired, I can still look at the flowers, even on a summer day for five minutes!

2) I am going to go for a ride in a glider (I hope the season isn't over!). I never got to learn how to fly, but if I can go for a ride in a glider, then that is what I am going to do.

Come on, I'm open to being inspired!

To be continued….

On Dying and Living, and 18 days.

The last few days I have been trying to focus on posts where I don’t always look passed out, or in pain, or feeble, because while that is part of my world, perhaps a majority, it isn’t all I see and do. And Luminara, as well as going to the Moss Street market and talking in Japanese to Yoko (she is from the prefecture just above Tokyo – here we are talking Punikura poses!) are other aspects to my life. Admittedly I only have these public parts because I have a partner and lover, and a very good friend (not yet lover!), who support me medically and physically to make it possible for me to have those experiences.

I even still have enough humor, on some days to make a “Oh sir, pity a poor, poor crip like me!” face; or is that my winsome face? Or the puppy dog one? I sometimes get them mixed up?

At the moss street market Linda was trying to convince me that the pink fu-fu headband with fluffy pink fuzzy was actually “ME” and would make a great addition to my skull headbands. For some reason, probably because Linda is such a bad liar, I was not convinced. What do you think, is the pink fuzzy that screams, “I want to be a ballerina!” really ME?

We dropped by the bank Saturday and I asked Linda to take a picture of us posed by this old Dodge (1930’s?) as a typical “Victoria experience”. Victoria is a haven for old cars and collectors as you get a $25 “collectors” driving plate and with the seniors, there are lots of 40’s and 50’s cars tucked away in garages until the next generation finds them (same with those silver Gulfstream trailers).

The reason I have been doing posts like that is because the last few days/weeks have been full of conflict with Beacon, and doctor’s orders. To leave a weekend of going out and then go back into micromanaging new caregivers, and spending most of your day's energy getting more tests, and again, more tests is emotionally hard.

Now that I have had a seizure in front of the doctor, he cancelled the anti-seizure med he was prescribing THAT DAY, because now with these additional tests he may find a better medication. But until then, he would be delighted if I could have seizures in front of everyone, and record how many I have this week, be put in an observation unit. While now, after 17 straight days of tests, meeting and activities, and going into another two appointments tomorrow, I AM having a seizure or more a day.

But the pain of always more, the finality of where it is giong, the overwhelming stack severe “ideopathic” things like auto-immune diseases and so much that pulls emotionally and literally at me is too much. Having to explain in detail, how each system is failing, three times a day as Beacon has pulled all my regulars and now I have to explain to each new worker, explain how they could fail while they are there is a hammer of my mortality, my own fragility. To then have to listen to then give yet more advice like going to a herbalist who did wonders. Or "Have you seen a neurologist?" (One of Yesterdays' workers) Or explain that no, this isn’t a condition they just found, it was observed in 1900, it is just nothing so far works. But two treatments HAVE been tried with limited success (in the US). But that I, like the disease Alzheimer’s (in Canada ) can’t be officially diagnosed until after death.

If you want to die, stop reading now. Because I don't. I may have thought I did, until I faced having mini stroke after stroke until my mind was swiss cheese and though function after function is lost (today, I tried to eat and choked instead), the body drags on, like a beast toward Bethlehem. T.S. Eliot was actually a bit of an optimist; because death and the end do not always come quickly, and so it is not a whimper, but a prolonged moan, with sobs and whimpers.

I do not want to die and inside of me there is a child screaming, “unfair, unfair, unfair!” No matter how horrid a person is, do they deserve this? Linda or Cheryl or both have used the ambi-bag this week. It is a bit waking up to being hit in the stomach. Turns out the ambi-bag, which breaths for you does not care if your gut or lungs get the air. So you tend to tense and resist as a first sign of coming to awareness, of self breathing.

Today was a seating clinic for an electric wheelchair; an indoor chair (which I can take outside) with head rest and tilt for seizures. They built it so that I cannot flip out while in a seizure, as I did in the doctor’s office (and still have nightmares about). When I protested, Janet, the blunt speaking but probably more effectively caring person over this last year, said, “Does that mean you will want to be wearing a helmet then?” She is the first person who does not want to observe, she wants to solve.

Janet is the eternal optimist, except on Friday when she saw me again for the first time in several months. I had lost more weight, and we explained the medical situation. She had to turn away while she said, “And you were the person who came to me a little over a year ago because you were falling down.” But then, between then and today, she sucked it in and came back with getting a chair for me that would enable me to keep writing, to use the computer, to get to the bed and bathroom AND to go outside and use it with my limited hand function, and when that fails, she is ready for that too.

I did not know until today how little feeling or control I have in my hands. I ended up having to roll my left thumb (strong hand) sideways over the on switch to stop double to triple pressing or over-pressing and turning the chair on then immediately off. I could use the thumb and join of the index to drive forward but had to learn how to use my shoulder to back up.

The chair will be rigged so that it has an indoor headrest and an outdoor one. It will be rigged so that I will have not only head support but as things progress, I will be able to maneuver the chair without a sip and puff or a cheek joystick but with micro head movements. That however could provide an interesting demolition wheelchair if I have that feature turned on AND then have a seizure.

I’ve learned a lot in my 17 months as a manual chair user. I’ve done a lot and I hope I still can do more. Janet is moving my Wheelchair report to the top of her list, and will be hounding Blue Cross for me. She says she WILL get approval from Blue Cross in three weeks from today, maybe two; and for me, a person who has had a chair less than two years ago (they don't approve chairs except every five years). I don’t know what she sees, but she seems sure of it and if she can get that approval in 1/3 of the time, that means only extra six weeks until the custom order is delivered (two months optimally). The way she talks, it will be a bit of a race between my ability to transfer being lost and if the electric arrives in time.

That seating clinic took three hours and I had a seizure. In typical fashion she and Randy (wheelchair guy) conspired to convince me that I had somehow agreed to order the chair in Barbie Pink while I was unconscious. As I couldn’t talk my hoots of displeasure amused them. I indicated that I wanted purple, and pointed my good finger (post seizure) to the skulls on my shirt – Dark Purple with skulls!

I lay this afternoon for more than an hour trying to sleep, on valium and pain pills but could not. The voices talked while I lay thre. So when Linda came home she sat on the bed and listened, helped me while I unburdened and cried. In some ways, I can and am already ready for death, in the way one makes a list and does the chores: Given Medical Power of Attorney over – check; Arranged a will – check, Arranged a living will – check; started making special bequests known – check, talked to Linda about going on a trip, back home, leaving this behind, after I am cremated, at least for a week or two, so she is not alone – check.

But then, some days, in the quiet, I realize, that while it feels the same like when I am about to walk out the door on a long trip, like I looked around at my stuff before the trip to Japan. That feeling I get, making sure that most things were taken care of, realizing that I wouldn’t see my books or DVD’s and never got this project or that finished in time; that whatever is, is and it is time to go.

But then it sinks in. This isn't just a checklist, or a trip. Because I won’t be back. And the weight of that rushes in.

I have fought, and fought, and fought, and fought and right now, going into day 18, I cannot fight anymore. With my care agency, with the doctors, with the specialists, with anyone who wants me to suck it up. You come here and suck it up; you go between appointments up to the Y to force yourself to exercise to keep that circulation going, and then overheat that night, and yet after 6 hours of sleep get up for 5 more hours of medical appointments. No pain specialist yet, three pain pills left. I have fought and fought, and fought and what did it get me? What treatment am I on? What more is asked that I 'should' have done?

Oh yes, due to all those test, now we know how many different parts of me are non-functioning or failing. The times I am not testing I am instructing or explaining to new caregivers what doesn’t work, and what that means. I cannot escape it, it surrounds me. And yet, I want to escape it.

I have lost a year with Linda due to those tests and fighting. This week, last week, I have lost 10 days I could have send postcards to people I care about, to people who are alone, who are housebound, who are lonely; I could have MADE A DIFFERENCE but instead I was on the medico treadmill.

My GP won’t use the D. word but he doesn’t talk beyond five months; indeed in a town where EVERYTHING takes nine months, I am getting my tests done from the ordering of them in 2 days, getting seeing my new specialists in six weeks instead of six months after he talks to them. What do you think he says that makes only one of two specialist in town put me at the top of the list? That convinces them I can’t wait 5 months?

I was and am tired, exhuasted, in pain and I cannot escape. There are no tricks, there are no moves. I will not fight anymore today. Or tomorrow. I will send postcards. Becuase that is what I want to do. Though as my careworker last night said looking at my little desk and the box of postcards, “Not much of a life is it?”

It is LIFE, though, isn’t it? And that is enough. And that maybe someone smiles out there because of how I choose to live, while I can continue to find and send postcards, it may not be enough, but it is something. I have been working on another project. Maybe it will have some use, maybe it won’t. For me, Xmas and Birthdays, this year, are when I have the energy to celebrate. That is now. This is my Xmas.

I know that every day, or night or activity in which I stress myself could be my last. I also know that I have a body built of exercise done almost every day (or four times a week after disability), of never smoking or drinking. And I believe that I still have a long way to drop. Yeah, I’m below a lot of disabilities now; a partial quad without traumatic injury among others. But the heart beats on, and I can get a pacemaker when it doesn't, and the lungs breathe, and I can, it seems get a diaphragm pacemaker, if I find anyone who knows how to install it.

I want to see the cherry trees blossom again.

Right now, I get heat stroke at 22 degrees centigrade and Frostbite at 13 degrees centigrade, yes that is far above freezing (as Cheryl or Maggie will verifty if you don’t believe me). I cannot survive traumatic amputation, or surgical, not without a lot of transfusions and some luck. So, as Janet, the diabetic said, “Be glad of the bits you have while you have them.”

I asked Linda on Saturday to get pictures that day, that weekend which showed me living. Living in that day. Because I am moving toward death, and I can either, in pain and exhaustion, be dying. Or I can live, in pain, and suffering, yes, but live, the hours and minutes of smiles and getting to know people, using my gift to talk to people. To joke, to see the grass and trees, the cat crossing the street, children throwing tantrums, people angry on cellphones; and on the other days, to live, even in a room, closed off, writing postcards, writing blog posts.

I love living.

O that there were more to go around.