I want this blog to be honest about what goes on. Something happened today that made me want to hold back. That's because I had been hurt so often before that I did not want to tell anyone.
I worked last night until past 6:00 am, then got back up at 8:00 am and went to see a new GP in town to see if I could be a new patient. I do that almost every other week and I am almost always rejected, or worse, accepted for a week, or until they realize that I have over a YEAR of catch-up to do, that the complicated, medical reports are nothing compared to what is right in front of them. Then I get the letter or phone call tell me that I am no longer a patient.
So when this doctor told me that she was my doctor of record, that she could tell when she came in the room I had marfans (asked intelligent questions about it), and wanted to know the name of my condition. I knew the rejection came next. No, the statement that she will look into it and find out what she can do and what she needs to refer. I showed her my blue finger tips, she wanted to know what I did. Linda showed her the concentrator. She wanted to know if it didn’t work, if my saturation was still to low. I thought, “Well then I die!” but said, “Oh I go to the hospital” (to the ‘magic ward’ where they can make oxygen conversion in the lung happen), and Linda said, “We have a larger concentrator at home.”
The GP wanted to know if there was (emotional) lability with this condition. I haven’t had a GP yet who knew that emotional lability (fast and intense emotions) was a sign of a neurological disorder. Linda said I had ‘Sundowners’ (a type of depression which occurs at night, mostly in seniors and those with certain parkinson’s related diseases – hence Sun Downer’s – the play on words). She knew what it was and was sympathetic. She said to make another appointment. She said to focus specifically, and that I would get 15 minutes not the 10 minutes each time. I asked her, “Are you my doctor of Record?”
“Yes, yes, see you are in the orange files already!”
It is too much to believe, so I don’t. I have been here before so often to have the phone call or communication a week or two or a month later. But it seems I have a GP.
Later I may just add this GP to the others who rejected me. She has a husband in Neurology. I am trying not to hope that this is the start of treating my illness, because it could be. I apologize that being brutalized by so many others, made me ashamed to tell you I got accepted so I would not have to face the shame of telling you I was rejected.
For Linda and I, before this happened, the night before, the afternoon before, we had, with one sleep deprived person to a fearful and in pain person worked things out. We have a future, we have an us.
I will still die, but hopefully not before New Orleans. Either way there will be an 'us.' I spent two days trying to temp as Linda’s life: managing the finances, Beacon home Support, VIHA, all the different agencies and looking after me too. It placed me at the edge. I need caregiving because I am unable to care adequately for myself. For two days, I burned myself up trying to care for two.
today I ate for the first time since Tuesday eve and was violently ill. It seems food is something I need to be reintroduced to. I worked for two days to get Beacon to be okay with sending overnight workers. So after 10 months, Linda will get rest, and have regular rest, I hope. Beacon and I are okay. But with VIHA, I found that the supervisor openly stated she was discriminated on the basis of disability, and would continue to do so, opposing all care recommended by doctors. Illegal yes, but who will enforce it. I told three newspapers, the head of the ministry of heath, the head of spin for the ministry, then all the BC agencies I could think of from the Parkinson’s society, MS society to Rick Hansen and the BCPA.
If I have to sue her, and her boss, then I guess I have to sue her. But she not only made Linda cry, but admitted to it the next day, and when I asked what she had done to improve the situation since then, she said nothing. I asked if that was VIHA policy or hers, to NOT act or investigate after people break down in tears? She hung up on me. I don’t think I’ll be on her Xmas list.
Never the less, I NOW understand the need for Linda to have time for herself. While Linda understands that we need to spend time together; that she needs to do the ‘doing’ but the important stuff is us ‘being.’ As for me, it almost looks like a forecast for sunshine ahead.
I sort of missed Halloween, which is sad as I was all ready, I mean, a good Goth is ALWAYS ready but the tension and fear of late sort of put Halloween in the back seat. Too bad, I was wanting my Victoria Francis Gondola ride.
Tomorrow we are off to see cats at the shelter, I hope. And then a little stop to do some specific shopping. A plushie for Linda, one that is hers, not mine, but a special one made just for her (I showed her pictures…she picked the most expensive one….typical Linda!). Then maybe I can convince her to help me buy an apron. “Are you sure we are supposed to be trying on the aprons in the bedding department?”
“Oh yes, most definitely,” I will assure her.
In Hawaii, we got loot, I got loot. Writing a blog a day, and getting the feedback, the readers became family, aunts and cousins, all who I I needed to find something special to bring back and share the trip with. The loot wasn’t for me, but I admit, but I did have fun shopping for it.
I take that back, as in the Honolulu Sanrio store I found a 3-D Hello Kitty in Hawaii Photo Album. 
What better way to remember any trip but through the mind bending lens of Hello Kitty?
In the Japanese department store, we found not only many Hello Kitty exclusives (coming tomorrow I hope) but also Washi, the first real Japanese Paper Washi since Kyoto. The workers there were from Kyoto, many of them and talked about the paper. Here is the ONE stationary set (there were four but I could only afford one). Each page is wood block printed onto watermarked paper.
I wish I got more. The paper is so thin, and so pure it shines. Each page has the cherry blossoms and the sun, with a paper behind to help write (it is up and down as this is Japanese of course). I want to frame each page, not write on it.
Here are some bath crystals I got in Hilo on the Big Island,
like most things, they will end up in the post. There is no bath long enough for me, and I have a shower bench in it. But others I hope will enjoy them. Shopping for others is fun. It is about trying to figure out what someone would like best of all based on what you know of them. Ahh, tomorrow I hope to show you the ‘For Japan sale only’ things I bought in that department store (Besides lots of pocky and lots of Melon Soda).
Fall has arrived, and the trees are sending the leaves down in bushels. Which make some kids happy.
I am trying to remember that delight of seeing big leaves instead of automatically thinking “Oh no, this means every leaf blower in town will be on my block forever!”
Sound-wise today was extremely noisy. I did not know why as I had a medical appointment. When Cheryl came she said the Coho – the 50 year old tilt back and forth ferry had carried over the Olympic Torch. Not only that, because of the ‘political target’ it could make, the slow moving, waddling Coho Ferry was escorted by the US Coast Guard until Canadian Waters and then by the Canadian Coast Guard. I am not sure what the plan was because the Coho was built back in the days when LARGE amounts of steel was put into ships, enough to make those giant Caddies that go through brick walls seem wimpy. So was a speedboat supposed to hit it with explosives? Because of the Olympics? And would the Coho notice? Or was one of the cars aboard supposed to go off, and then the Coast Guard would what? Shoot all the potential suspects swimming toward the Coast Guard vessel? I am not clear on the logic of most things security related, like why U.S. citizens like Cheryl can come to visit me with a driver’s license but cannot as a CITIZEN of the US return to her country/gated community with one, but MUST have a passport.
Anyway, the torch arrived, and according to Cheryl, the ‘Torch Run’ of the Olympics (which is supposed to be about ‘amateur sports’ and not ‘whoring ourselves to media and corporations’ is the ‘RBC and Coca-Cola Torch Run” – because moving the Olympic Flame certainly can’t be done without sponsorship! So Coke and Royal Bank had been using this as several million in advertising having contests on who would run with the torch, and so the torch was jogged 300 yards, then lights the NEXT person, in order to get all the people in who Coke and RBC sold the spots to. AND then afterward, you can buy the torch you ran with. Surreal. I was about to make a joke about how probably Pepsi is sponsoring the Torch Run in Real World or one of the Virtual Worlds. But then I thought I should check to make sure that isn’t actually happening; since many big brands are now opening shops in virtual worlds (Yes, I realize how insane that last sentence sounded – are you being served in your Nike Virtual World shopping experience by penguins? Who knows? Does someone purple carry the torch with wings?).
Back to reality, after my last blog about heaven help those who try to stop me going to badminton, I got 30 minutes sleep, and then in the rain I rolled to badminton (I am not a political target either!). I ended up in my first game facing the badminton coordinator and one of the other very good players. But I was not daunted! In fact, here you see an early point where I am using one hand to push myself up onto my clothing guard while I reach for the birdie.
This caused the wheelchair to tip over, but I HIT the birdie, pushed the floor with my fist and the chair bounced back as I called, “In play, still in play” and we went on to win the point. Most impressive for someone who has a 17% chance when trying to scratch their nose of hitting it.
When serving, the important thing is to serve LOW over the net so they cannot slam it back at you – this was a VERY good serve I managed, and Linda got it.
I did confuse them a bit with my serves. And they came back at me and my partner. It was a match to 21 points. We were ahead, then behind then ahead. Here you can see me wheeling past after guarding the front and probably blocking a tipped in birdie,
I seem pleased, or in concentration.
While in this shot I am about to send the birdie into the far back corner.
The problem is that I can only be so many places, as I have a chair that does not move sideways, and the opponents learn to NOT hit to those places – very vexing. But I still got some hits in, here I moved back to cover my partner while he was serving and hit the responding hit (you can see the birdie at the VERY top of the screen, that bit of yellow) which I hit backhand to boot!
Well I played tough, or honestly by the end I was mentally exhausted and a little confused but I tried hard
and we ended up losing 23-22 or 24-22, I am not quite sure, all I know is we were tied 21-21 and so could not finish but kept going. I like close games and this one was close.
After another game I wheeled home and then got too little sleep due to two cement trucks, a crane, two chainsaws and a few other handy noisemakers the next morning starting at 6:56 a.m. Ug.
Remember those two squirrel siblings I told you about. Well here they are. You see one is bounding toward Cheryl, while the other is finding and digging up where the sibling just buried the last peanut.
Then, as the squirrel gets the peanut, you can see the other in the background, having found the last peanut is now eating it.
Then they move aside so the happy sibling (the poor clueless one who you end up tricking to do your chores) goes around to find a new burying spot while they finish the peanut – then as the sibling bounds off to get another one, they dig that up too. Sad but oh so familiar.
I also got some postcard loot for the postcard project in Hawaii and on orders which finally came in – here is one of the Postcard Books that I have been looking forward to getting and sending out.
I used to spend my hours as a youth in the old Pasadena Public Library which looked a lot like this one but a lot bigger (it had lions too outside). There was hard wood everywhere and the old card catalogues, and the information/answer desk where you used to be able to go and ask a librarian a question like, “How many moons does Saturn have?” and they would find the answer for you.
I also got this set of Escher cards 
which I can send out with little gifts or just as cards while the hand lasts. I like Escher because so much of it seems a metaphor for disability; the way medios think and work and so much in life. What doesn't go round and round in disability land?
Also here are some of the stickers we picked up at a store, I think just outside the Waipio Valley called Honoko.
We have already sent out several of them (half?) on the postcards we did last week – about 30+ in number. I liked finding these touches of Hawaii and bringing them to the postcard, because when they are gone, they are gone. And that is the point of a postcard, isn’t it?
For those who are going trick or treating tomorrow, good luck. If you are in doubt whether to go trick or treating this is a little measure I use: If you are carrying a bottle of beer or liquor and take hits from it between houses, or have to put out your cig before asking for candy – you are TOO OLD! Sorry.
Again, if anyone wants any of the Hawaii pictures in larger format, just email me and I will send them along. Here are the rest of the pictures that Linda and Cheryl took with the underwater cameras showing, even in this EXTREME lava desolation,
how quickly the eight different types of coral found here adapting and so many different type of fish can show up.
Here is a shot of four fish, three different types, from a top view down.
The difficulty of shooting blind (can you imagine if we had snorkels?), is you never know what you might end up shooting in the camera. Here you can see we have captured a rare glimpse not just of our usual fish but the Cameraus Obsessiveus
in a crouch (top right) waiting to find it’s prey.
Just in a few inches we see the diversity of four fish (notice the grey one escaping through the lava rocks at the top)
in such a small space.
This picture gives us a fish eye view, literally, of three different coral, the potential hiding places, and the ‘deeps’
(about 4 feet deep, not much for humans but a very different view if you are only 3 inches long though). Note the orange fish right at the middle bottom. They do blend in.
Here are four different types of coral in one shot, grown in just a few decades in the slight shelter of a southern tip, warmed to 70-80 degrees due to lava. 
In another twenty years the diversity will be twice that what it is now, and with a full parking lot (of 8-10 cars) and a dozen people sunning themselves, I think it will be given that chance.
In the end, this is the fish’s world, we just have a chance to see it, thanks to the underwater camera, though their eyes.
It is beautiful but also a little alien. Yet definitely worth going to see (and back to see?).
Apologies on the delay in writing, I have been busy bleeding (yes, that old excuse!). I was bleeding on the trip and continued the tradition back home, some of which (like the sinus cavity nosebleeds) might come from the altitude (but for three days?). There are many, many ways to bleed. Some of the not fun ways are a day or two of anal bleeding from inside. Not nice to look at the toilet bowl, not nice to wipe and come away with “Oh my GOD!!!” We presume that some roughage in restaurant food or the fruits I tried got through and cut me up in the lower intestine. That stopped today and I am not on the mask full time with purple hands in order to breath so time to get to work, no?
Oh, yeah, yesterday was bad breathing and a pink and red froth coming out of the lungs and mouth, which I think was all the stuff I had aspirated the previous days cutting up to the surface. Like I said, lots of bleeding.
Why did I not go to the hospital? Well, because if my intestines are cut up due to some roughage, then sticking a scope up there isn’t going to make it bleed LESS now is it? Also, have you ever had a bleed in your SINUS CAVITY cauterized? If I thought I had lost a pint or two….or three, I definitely would have gone. As for the oxygen conversion and erratics: well, one seems to feed into the other but if I am on a full flow concentrator rebreather mask and that isn’t working, all they can do is increase the flow, which, if the problem is autonomic failure (which it is), then it isn’t going to help. But that was the afternoon. In the morning I went shopping.
I had just gotten off a day and a bit of full time oxygen and it turns out that the ONLY place I can go to get clothes to try on to buy in town is closing. Tall Girl has gone bankrupt and the stores in the US are probably already closed. The one in Victoria was selling out and I have a total of 1 pair of jeans, 2 pair of joggers (you have seen them in the Hawaii pictures, over and over). And it seemed unless I went, that is all I would have.....forever. So off we went, and I tried on about 22 pairs of jeans, trousers/pants, and joggers. I found two pair. Linda of course found lots and had to restrict herself. This is not exactly how I hoped to balance finances post Hawaii (AHHH!), but with only other prospect as flying to the UK over the next year to Long Tall Sally to get any new clothes as I have: no belt, 1 pair of socks, 1 pair of jeans, 2 joggers, some tops, no jacket, and no winter or PJ’s which fit, so we came to shop. Linda is here in front of the store close out
(notice it says “UP to 80% off – we never found the 80% off, just the 20-50%) with a t-shirt that says “Organically Tall”
I talked to the workers and they all have jobs, after the store dies in 12 days. As my neuropathy has progressed a great deal, I need clothes that are easy to get on and stay on (Neuropathy means my nerves are dead, a whole lot of them, almost all my feeling nerves, and most of my movement ones, and feedback nerves, plus real problems with hands over the last couple weeks). I have the scary hair of having tried too much on and am wearing cords which I bought
(turned out the $34.99 was actually a $64.99 but I could only find two cords/trousers/jeans), and a t-shirt which says, “No, I don’t play basketball.” It is a small because it has better width on the shoulders and length than the X-large. Also, it turned out to be a reduced price of $16 instead of $10 like every other (like Linda's which was $10) because it was the color black. Black t-shirts cost more. Do you now understand why this company was going out of business? When they charge $40 for a t-shirt? I love the shirt because I used to be asked it all the time, in fact one woman while I got this picture taken said, “I love that t-shirt”, so I wore it home. The irony is that I did play basketball,
I was just really bad at it. Loved it, and if I had a good coach would have done great. Oh well. But yesterday got that and some winter PJ's and some winter socks, thank goodness!
But back up a week and in Hawaii, after the sulpher at the volcano, I was very sick. You may assume that I rested. You assumed wrong. Before going to see the lava that night, I navigated Linda and Cheryl to the Kapaho Tide Pools as Linda really wanted to go snorkling and see fish. People often think of these fantastic views of scuba divers. 
We didn’t have that but we did have a series of interconnected tide pools on the southern tip of the island left over from the 1955 eruption. Many of them are still heated from below and many houses along here have closed off some for private pools. But there are still so many, nicely warmed for coral and sheltered that there is an abundance of fish. There are eight types of coral of which if you look for colours you will see brown, yellow, purple and others in the pictures. The underwater camera’s haven’t been developed yet. These were taken with our trusty Canon (which was then double bagged in Ziplocks).
While navigating toward the tide pools we passed the plantation areas from the lava rich soil of the 1790 eruptions. The land is covered with plantations. Linda stopped at this one to take pictures.
At first, from the road we thought it was banana’s. Linda was very excited as she had not see these fruits ‘from the tree’ as it were. It turned out to be a papaya plantation
and once Linda had taken her pictures, we continued on.
Being again PURE LAVA, Linda and Chery went ahead while I rested and were already deep into gazing.
It turns out that fish like to blend in, and so the trick is to look at the water until instead of gazing over them, you see the amount and schools of fish that are passing before your eyes. Down the bottom of the picture is a yellow and striped fish called the Sergeant Major and is seen in most pictures as there are many schools of them.
The other fish, like the two blue and orange ones up at the top of the photo are as yet unidentified.
Linda, with her underwater camera, was deep into the hunt.
We had not brought masks (and with salt water, don’t put your eyes under, trust me!), so she was aiming and shooting areas. But watching her, I saw these two fast and flighty fish feeding.
Cheryl was watching a puffer fish and we saw a turtle together while Linda took off. Cheryl, as the lava is slick from algae growth atop it underwater used her walking stick to move from area to area, pausing to check out what there was to see.
For example here is a good picture to practice with, as there are 11 or 12 fish, some swimming, some sideways on the bottom feeding, some clear and black striped hiding, all in this small area, only a few feet large.
The trick is seeing the fish, not the rocks.
Linda was heading out into one of the larger tide pools which has many different types of coral (very sharp and will cut you if you step on them),
look for the different colors on the floor of the ocean. Because that is where these lava shelters lead, right to the ocean waves.
Linda managed to find a shell, which we wanted for a friend, only there was already an inhabitant inside, a little hermit crab which you can see crawling out right now.
And about to upend the shell and take off for water. The speed those shells can move with the crab underneath going full tilt is rather comical.
Here, by the purple, green and brown coral Linda got to see a pair of angelfish swim past, the streamers following.
Or as Linda excitedly put it, “It is just like seeing fish from the pet stores in the wild!” I am not quite sure I get that but I sure would have liked to see the Angel fish. I however was pretty stuck in one place, and actually ended up with some lava rash on my bum (lava is not a forgiving or soft rock).
Here is a particularly colourful and fast moving fish on the right bottom facing off with a grey and dower looking fish down at the left bottom while the other fish including several Sergeant Major fish take off!
Cheryl has followed the Lava to the ocean waves, where the nice warm temperature starts to drop off.
The warm water makes it easy to forget how much reflected and direct sun you are getting and we all ended up getting tanned or in some cases a bit burnt.
Linda, focused again, is carefully watching and stepping around the coral.
In a way she is right, it is like being in a giant aquarium, with no one in charge, all the fish just going every which way. There are several who liked to hide under rocks, and others who like the sun. Here is a picture with over a dozen fish but which has five different types of fish in it,
this including one large one coming out from under the rocks and one which is hard to spot due to the coloring, made so that it matches the background (hint, click to blow it up and look in the top left).
As for me, using floatation, I was carefully sat above a deep cove of brown and white coral.
I just hoped that nothing came out and nipped my heels (not that I would have felt it, just the thought of it is creepy!). Not a great picture of me but yes, I came, I saw, I did the tidepools!
Not only that, I waited and waited and got a picture of this medium sized fish that kept mostly under the rock and coral, only venturing out a little bit before dashing back in. So I waited until I finally got a picture of him.
Here is view of raw lava which makes the pools, only 50 years old but which in a hundred years or so will be rich soil, but for now is desolate but for a few green plants holding on. Beyond that is the rolling surf, one part of the ocean in which no one will surf or swim.
The tide pools themselves are a local secret, but we are about a mile from the very southern tip of the southern most island in the Hawaiian chain. That means if you go swimming and there is a rip tide, or a current, then the next piece of land you have to swim for is………Antarctica! Yeah, that’s why people don’t swim here – as a tip, lots of currents and lots and lots of risk. But nice tide pools.
Linda wanted me to bring her just one thing home, a nice little eco system, taken from the pools (here she is enjoying it). 
"Um, no Linda, I don’t think we can smuggle it onto the plane as luggage?"
"mumble...grumble"
"No, Linda, the fish have to stay here, and yes, I know the ones in the shop aren’t as exciting but I suppose we can always come back."
What better way to remember any trip but through the mind bending lens of Hello Kitty?
I wish I got more. The paper is so thin, and so pure it shines. Each page has the cherry blossoms and the sun, with a paper behind to help write (it is up and down as this is Japanese of course). I want to frame each page, not write on it.
like most things, they will end up in the post. There is no bath long enough for me, and I have a shower bench in it. But others I hope will enjoy them. Shopping for others is fun. It is about trying to figure out what someone would like best of all based on what you know of them. Ahh, tomorrow I hope to show you the ‘For Japan sale only’ things I bought in that department store (Besides lots of pocky and lots of Melon Soda).
