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.

Worth the effort?

Ha. Hard day, and got some help breathing. Thanks. The heat is growing and some of the new meds are changing me. The edema is coming off of me in pounds, my lower legs are thinner than my knee cap and up top I think I got downgraded from B cup to A cup. I literally change every night, collarbones back and clothes hanging. I'll try to get a picture tomorrow after boxing. Is this good or bad? As Linda put it, it will be easier to move me when unconscious. Easier to wheel the 5K too.

I know, we know this is my last couple months, maybe a year or 10 months if I am really lucky. But there are times, like when I fall backward into the darkness and I stop breathing and they are working on me and when I open my eyes twenty minutes have passed. And the times two people are working on me or four people, or the ER, with machines hooked up everywhere and I think, "Am I worth all this effort?"

Then I think, "I better be." Like Milton says there are some who only sit, but I have little patience to wait. I box. I write. I exist, and that is worth fighting for.
Been listening to Mumford and Sons: four guys (including a double bass player) who are like a rockin' Maddy Prior/Carnival Band - I recommend full screen if your connection can. As one comment says: Guys with beards make good music!

If you decide you want the album (like I did), it is on Amazon for $9 (As they are from the UK it is 8 pounds on Amazon.co.uk - so a bit of a bargain for the US).
Or get Sigh No More download
- all 12 songs for the same price. (329 five stars)

Looking at Edema, circulation problems, follow-up to pain and Sakura-con hopes

Welcome to the online Mystery Spot! Yes, houses are tilted, cars roll backwards and legs swell and drain in hours. I don’t how many have visited a ‘mystery spot’ – I have! I have! The ones with optical illusions. Sort of like a fun house except without the wobbling walkways and rolling barrels to get out. The barrel has always defeated me.

One of my first ‘funhouse’ memories was the Canadian PNE (a travelling summer fair), where I did everything really well, including the spinning optical tunnel with wind until it came to leave. There was a tumbling barrel, like a dryer, and no matter what I did, the thing just kept flipping me over, I tried to escape by reaching out in hopes of grabbing a handrail to pull myself out. But no go. There was much amusement from people waiting in line.

I go to Wales, there is a carnival faire that comes at Xmas and they have a fun house. In the UK, or in Cardiff at least, there are two amusements: one is to GO on a ride, and the other is to hang around with drunk friends and laugh at and harass people on the rides. So each ride has a crowd of about 40 people + in front of it just watching. And Linda and I decide to go on the fun house. Same thing, I am stuck in the barrel, luckily Linda pulls me free, to much laughter from crowd. I am mortified and disappear until the New Year approaches when we are approached by a guy who wants us to say hi to his girl friend on the phone...then he wants to kiss us. This random kissing thing from guys is a reason we stopped going downtown on New Years Eve. But help yourself to 'random drunk kissing' if you are in the area.

Sorry, beyond memory lane, I wanted to show you the edema, which is the pooling of blood/liquids in the arms and legs and sometimes torso. The day after the pain drain, I was on the edge with my body in shock almost constantly, shivering, and overheating at the same time. I slept most of the day woke up and my legs were like this. As you can see, one is THIN (thinner than I have seen in a long time) while the other is twice the size (with some very large and odd bruising). Later in the day, the left leg swelled back up again.

Also, the hands. This is within three to five minutes of waking up, and though the camera has ‘intellegent auto adjusting’ which is to make people’s skin and body look…well skin color: you can still see some wacky Reynaud’s in my hands and on my left hand, in the finger cuticles, you can see the purple/blue, while the right hand is pink. In reality (hard to capture on 'smart cameras'), my fingers of one hand were dark purple and the other hand was rosy pink to bright red (sometimes the hand just turns fire engine red). We use the ‘mood ring’ of the fingernails and lips to determine whether to go on oxygen. If it is pink to red, I am good, if it is purple, add oxygen, if it is blue, add more, and if it is black, um, worry a lot. Usually I wake then in an hour or two my body can’t sustain the transfer of oxygen from my lungs to my bloodstream. As you can see, even on waking, I wasn’t able to do that. Also, I had diaphragm difficulties that day (unable to swallow, unable to talk, and belches from trying to breath and breathing into the stomach instead of the lungs).

BUT, I went to sleep again and if I woke up the same I figured, “well, it has been a good run”, but I was able to not superheat, and got a bit more of endurance. I am still too weak to shower, but I am breathing, and not hallucinating quite as much: I was apparently frequently saying, “I am not an octopus, don’t make me into little balls and eat me!” (a treat at Japanese Festivals). Still, Eiki Eiki and I spent lot of quality time together in sleep mode.

While in recovery Linda has been helping me (watching episodes of 'Psych'), like here where we are playing cards.See the serious expression? That is because we are betting pocky (see it at the bottom of the picture, right next to the melon soda)! And I am out of dark pocky! But I do have Melon Soda, thanks to Cheryl picking up some in Seattle and bringing it over a while ago. I like Melon Soda.

The goodish news is that we have contacted the makers of one of my nighttime painkillers and they have faxed a sheet to one of the doctors who agreed to fill it out. Once they send it back, I get three months of compassionate medication. Which is WAY better than the 6 days of samples I have right now. So hope is on the way.

Also, thanks to some surprise donations (really, thank you!) we priced up Lyrica and the alternatives for nerve pain online. The problem is, we know the reactions to the other medications, and only Lyrica and one other can be used as a single pill for an anti-seizure medication AND a nerve pain medication. While two other popular nerve pain meds have seizures as a common side effect. Which means I would need a nerve pain pill and then two anti-seizure pills.

So a couple hours of research and options later and It turns out, eliminating the drugs I have bad side effects with, that Lyrica is the still best option. We found that the price is the same whether you get 84 of 25 mg or 300 mg pills. So we are going to order from a company we already use online (I am supposed to be 300mg+ a day). There is no generic for Lyrica (and won’t be until 2013), but the amazing display of kindness with surprise donations will cover an order for three months worth of the medication at the level I am on (plus we eliminate the $30 per month ‘filling fee’) - making it almost half price of what we pay now. So that is another week or two away, to survive, but we found six more pills, so now I am on 35% of the doctor recommended dose, which covers about 50% of my pain.

So the hope is to keep working towards a Fentynal patch, as the pharmacist says they can start at a very, very small dose and the patch can be applied even when I can’t move or the pain is so bad that I am not making sense or with diaphram problems and unable to swallow. Plus they last up to three days per patch. So, we have hope that, thanks to the kindness shown, we will have three months to work out getting the pain problem addressed with, and Linda some temp work to help income.

For me, I am ‘making money’ by reading manga. Yes, I am having a sort of final manga sale, which has me reading what I have so that I can sell a host of sets, many of them out of print. We will do that the end of the month, I am also selling my books at the Book and Paper show in a week. So as I say, it is what it is.

I plan and hope to go to Sakura-con this spring.Though not with the strange bulge 'down there' that so many anime girls have, which convince us that the illustrators must never really have seen females in that kind of 'having a girlfriend' way (a real one not a blow up one, says Beth, who has a body pillow on her bed with a girl in lingerie titled 'The Bridal Night') Why? Because most females don't look like they are packing for a drag king performance later (or was it the size KK breasts that defy gravity that clued us in, hard to say - but if you can place a dinner tray on your breasts stable enough to eat a three course meal, you either need breast reduction or you are an anime girl).

Because I was too sick to go to boxing this week, I need to get strong enough to go and sweat and get my circulation in action to keep me alive. Alive is good. And as someone pointed out to me, Hope is the key. To look at a future filled only with stop-gap issues where I am constantly in terrible pain until I eventually die is NOT something that I can keep doing, or something I think anyone can keep doing. For me, the mental refusal to stop, to quit, as evidenced by boxing, by trying to wheel outside 2-3 times a week and by getting out of bed every day, is critical to avoid quick deterioration. So though this MINUTE, Sakura-con looks a long way away and has a lot of things in my life to stabilize, I believe I am going to go, and with Linda and Cheryl. This year we can see the Cos-play chess!

There is now, which is important to live in, but there is also the future, and if there isn’t much hope NOW, then I need to find a future and what needs to be done to find that hope. Back to work at the ‘manga mines’