Where in the world is….

I’m so glad that I didn’t do something completely stupid and make a New Year’s resolution to write more. Because then I’d feel guilty, or something. Nah. Although, if there’s stuff that is mildly okay to feel guilty about, it probably should be that I don’t do something that is actually helpful in making my brains work (except when it doesn’t) more often. Then, if it gets in the way of doing other crap I want to do, then… well, you know, sometimes things have to give.

Anyway, I can’t say I feel guilty. There’s just annoyance. The web. It is looking at me.

So I am writing right now from lovely Rhode Island, in a pretty nice hotel. Mr. Shoe is off watching other people push little painted metal Barbies around and making sure they aren’t cheating (or being cheated upon.) Penny is at the end of the bed, passed out in an exhausted drunken stupor, like any celebrity should be. And people have no idea who the hell I am. They’re all like, “Is that the pug with the tongue that I see online?”

And Penny is like, “Who are these people? Can I walk slower without being completely stopped or going backwards? Can I trip this person with all this breakable stuff in their arms?”

I don’t know, yes, and yes, Penny.

So this thingee we’re at is Templecon. I’m here because it is a pet friendly (really nice, too) hotel and Mr. Shoe loves this event and I feel like the past two years I’ve screwed it up a bit for him. Okay, year before last, I didn’t. He was here the whole weekend and then some while I sat at home thinking about having major surgery the next week. Ahem.

Last year I made him come home on Sunday night, when he was tired and I know that was unsafe and uncool, but I felt crappy. Then I learned the hotel is pet friendly and I was like… Y’know, if I have to feel shitty and bored in an enclosed place, why don’t I just do it there, if I can take Penny? It might be less boring. I won’t spoil Mr. Shoe’s fun, cause he deserves fun. He won’t worry, I’ll worry less.

It works out. I mean, I’ve seen Mr. Shoe for all of six minutes since last night. But I have my stuff here, and I can take Penny downstairs to see people, and it’s no harder to take her out here than at home. Penny and I ordered room service (chicken wings!) last night all by ourselves and watched Cash Cab. Yeah. We did. Because we are goddamned awesome.

There is a lot of steampunk people here. Now, steampunk is a cool look, because it can support all body types and is pretty expressive and neat looking on all types. Big guys and girls don’t need to to look like dirigibles, and can rock a look as neat as the skinnier types (actually, definitely helps to have hips, ass and boobs. Skinny girls probably get the crap end of the look here). But here’s the thing: creating a steampunk look is a lot like writing poetry. It is something best left to professionals. Fortunately, there are a buttload of professionals here. (Unfortunately, it definitely highlights those people who are not professionals. Avert your eyes, and look at the people who do it right. There are a lot more of them).

Pictures? Not yet. Um. I have only two hands, there are a lot of people, and I have to take Penny out with me. My camera requires hands. Two hands. I didn’t bring the tripod, as… well, Penny already tripped over a tripod of a camera that costs a lot more than mine (which was not insignificant). Fortunately, tripod and camera were damn near immovable.

There is a zebra effect here… the vast majority of dudes are gamer medium (2XL) and wearing black shirts. Therefore, Penny and I are running up and licking everyone.

Okay, I am, anyway. God, Penny and I are both tired. I am just socked out here. Something about grabbing and licking random dudes that makes a tired, tired, celebrity out of you.


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This Little (Strobe) Light of Mine

In a valiant attempt to get my doctor’s visits on a regular follow up sort of schedule that’s staggered, so that I don’t have eight months of hanging and everything crammed into three weeks, we made a bunch of follow ups last year with various doctors.

Then all those, “hey, by the way…” surprises and referrals came up. This meant that this week, I had not one, but two flexible scopey things shoved in various parts by various doctors. Honestly, for as horrifically unpleasant as they both sound, it’s kind of sad to say that neither one rates any where near the worst tests ever in my book. One was more unpleasant than the other, but you’d probably expect having a scope inserted into your bladder via a body part that’s generally one way would be a little more unpleasant than having a light, camera and disco ball (almost literally) dropped down your nose.

Anyway, the bladder cystoscopy was fine and all. I actually really like that doctor, and I do know he has the tendency to note other things he finds in a letter to my sweet GP. I am under the impression my kidneys looked fine if a little large on an ultrasound, but for all I know that’s in normal limits.

The next day I went to the speech pathologist (yeah, the one I was referred to in September. I am just as glad I saw her at my ENT now, though.) The going theory was that I had some weird ass paradoxical vocal cord dysfunction. Apparently, I don’t.

Anyway, this test was neat, if not exactly loads of fun. I am sorry, I am a camera nerd. They shove a flexible endoscope with a strobe light and a video camera up your nose and into your throat and hook you up with microphones and stuff stuck to your neck. Because moving and talking tend to aggravate my breathing, I got to walk around and yakk meaninglessly for a while beforehand.

Speech pathology lady (really nice lady… I guess it pays to be someone people feel like they can talk to in that position) asks me as I climb back into the exam chair if I tend to make noise on inhalation or exhalation. I said no. As she goes after me with the velcro neck strap and mic, she said, “Yes, yes, you do.”

So down goes the scope, no problem. She tells me to swallow. Problem. I mean, I have a hell of a time swallowing anyway. So three attempts and one successful swallow later, she can see what she needs to see (I dry out. It’s gross. Trust me.) Then I get to talk, and breathe, and sniff, and make a high pitch noise. I don’t know if I was messing with the equipment calibration, or if there was an autotune somewhere, but I can’t imagine there weren’t some service dogs cowering somewhere in the hospital at that point. I guess when I made noise, she turned on a strobe light, which helps you see how vocal cords move.

Know what you don’t say to me? “Movement disorder.” Because I go straight to ALS, which scares the living bejesus out of me. Of course, I don’t think that’s what is going on… She said it looked a lot more like the sort of stuff that she sees in people with essential tremors or Tourette’s or whatever. She even asked if I didn’t notice any little under the radar throat clears at random intervals. No, I haven’t.

What about just little tiny subvocal sort of blips.

Mr. Shoe has been asking me why is it I’ve been mooing lately. Evidently, that’s why. I am serious, though. I mean, he’s asked about mooing, and I couldn’t tell you why. Actually, I think I might have gotten a little bullshit at his asking.

That being said, it doesn’t exactly explain why I am short of breath… I mean, unless you consider it from the standpoint that no one friggin’ listens to me and it has felt like it started in my muscles all along, goddammit. Oh, sorry, I let the mad cow out. So the hunch is whatever is causing what was seen could be the same thing causing the chest difficulties.

What it is doesn’t really matter. I mean it. I mean, I’ve been worked up for all the crap that has a work up, and the rest just is accumulated over time. It might just be a paraneoplastic neuromuscular fubar and stay that way. I don’t care. Fact is, there’s not a whole lot you can do at this point but document what you find, and so I’m kinda glad that there it was, uniformly being twitchy, on every last noise I made, be it high, low or in-between.

The speech pathology lady thinks that exercises might at least help with airflow and speaking (I get really tired talking on the phone… first, because I talk and no one knows what I’m saying and it isn’t like I am talking differently, until of course I keep getting asked to repeat myself, which then makes me homicidal and want to tell the person (friend, family, physician) on the other end to get the crap out of their damned ears).

Seeing as I do have a problem swallowing I’m also getting a video swallow test. Yeah. See, that’s going to be unpleasant. It requires barium, I’m fairly sure. I suspect it will be disguised in various and sundry food items and consistencies, thereby putting me off any food item that remotely resembles these things.

It is nice, though, seriously, to have something that I’ve been telling them felt like a bunch of muscle spasms that are somewhat variable in given situations (I get tired, it is harder to move, spasms feel nastier) actually show up on a video looking a lot like what I was describing.


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Not Blue, Maybe Not Great

Y’know, when Mr. Shoe and I put the pond in, we heard all sorts of fun stories. People lost fish in winter, to raccoons, to cats… I think the losing fish to cats is a complete myth. The cats love to watch, but trust me, they know better. We’ve not lost a one to a raccoon, but we’ve lost them to winter, whether we bring them in or not.

Another thing people have lost koi to are things like herons. It isn’t like we don’t have herons in the area, but c’mon. We also have four houses right in our yard, and used needles on our sidewalk. I’m sorry. So after hearing a story about how some poor bastard lost a $400 imported koi to a heron, we thought, “Damn, that sucks, but at least that’s a cool way to lose one, and one we’ll never have happen.”

So guess why we were putting a damned net over the pond on New Year’s Day? And to the people hung over in the four houses right in our yard, so sorry about the obscenities and banging on our windows. We had to save that particular koi in the twenty second window of time we had (and incidentally we saved two of them.)

So (if you’re sensitive to naughty words, stop reading and I won’t laugh at you. Yes, I will, never mind) we named this guy Shithead F. McAsshat. Guess what the F stands for? Yeah. This great blue heron (who isn’t terribly blue, but shape shifts and gets big when pissed off or frightened) comes just about every other day for the past week and a half. He’s gotten a couple of koi, not counting the two we scared out of his maw last Sunday. He’s cool, and while I hated seeing him try to choke down the lovely red and white koi, I want him to come back. And not eat them. Which I understand completely is asking way too much.

So we figured the net should slow him down, and at least when the pond is unfrozen and not grown in, it’ll give the koi a shot at living. We’ve got way too many koi in there (baby koi explosion) so losing the dumb ones isn’t a huge deal, but in winter, he’d easily empty the pond in three days. We kind of can’t let that happen.

He is freakish. Yet so damn cool.

I'm in your pond, eatin' your koi

Great blue heron


What's weird about this?

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So Far, My Hair Hasn’t Killed Anyone

I think I’m nearly recovered from my killing a squirrel with my deadly looks last week. In keeping with lovely Momshoe’s request for a short story about this incident… Perhaps a beefier essay would work. It’s not quite like when I told one of my friends about my suspecting Penny had another impacted, um, anal gland that needed expressing, and so we took her to the vet. She didn’t. It was me. I mean, I didn’t have an anal gland that needed expressing, but my skin does some really ucky things sometimes. My friend thought that it would rock to write a story on that from Penny’s point of view.

Penny’s point of view right now is in evil eye mode.

Penny is going to bite Santa's butt

This hat makes her less than happy. I think it’s the uneven weight distribution that makes it feel weird. Her little pirate hat at least has elastics that make a “Y” around her ears, and this one didn’t, and I know that was pissing her off. It was pissing me off, because putting it on her I couldn’t imagine that the elastic was going to sit nicely on either side of her ears. Poor kid. The things she puts up with.

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I Am That Scary

The only comment I’m making on my absence is this actual sentence. Suck it up.

So the last few weeks have been funny, both in the “ha ha” and peculiar sort of way. After three years, my second generation Kindle finally got to the point of misbehaving more often than not, so I went for an upgrade in the form of a Kindle Touch, which is actually very cool. Three years was more than I was actually thinking I’d get out of the original, so it’s all good. What was really kind of funny was that the 3G on my prior Kindle just made the whole device apoplectic — the day the new Kindles started shipping. I stuck it out another week or so, just because… well, I was thinking maybe it was a temporary flake out.

Also, we had a squirrel explosion this summer. We have squirrels as far as the eye can see on our street. They have actually managed to bang on our storm doors and make it sound like there’s someone out there, and when you peek out the window, there are a couple of squirrels squirrel-fu fighting on the porch. There are so many, they are all stressed out and plucking each other.

Because it’s been unseasonably warm (then cold, then warm, then cold, and it is pissing me off) they had litters late into the year. There are still a million of them. But some are starting to really look bad.

I noticed one that tended to keep his head tilted down except when he was moving. Obviously, something was kind of wrong. I noticed him on Sunday. He was a littler one, but looked like his “stress plucking” was growing back in. Yesterday, I took Penny out for a walk, and this one came tearing around the corner and kept barrelling towards us. A fraction of a second more, I was going to grab Penny and run, as he was less than a foot away.

Then he saw us. He veered to the side. A teeny bit. And stopped. And stared. And stared. He looked scared to death (but not like he was out of his mind aggressive like our rabid chipmunk). He looked like he didn’t know what to do except be scared.

Since Penny only noticed him as he moved, and now he was being still, I got her to start walking away from him. He still stared at me. Then he pooped. Then his heart stopped.

I didn’t think my hair was that bad. God.

I was hoping it really wasn’t the case, so I took Penny down the street, and noticed he was still in our driveway when I walked past, so I took her the other way, and when we came back, he was still there. It had been about four minutes, maybe. I scooped Penny up and walked up the driveway (I didn’t want her near him, dead or half dead or alive.)

I peeked at him, and there was a lovely parasite load streaming off… mite sort of things, I guess. It was sad, and plus, I had to figure out where the hell the shovels were (I ended up using our snow shovels) to get rid of him… So I trudged in feeling mildly weirded out that I caused cardiac arrest by merely looking at a rodent and kinda crawly that I was going to have to move the poor sucker.

And then…

Our bird feeder is supposed to be squirrel proof, but it isn’t, of course. And we have a water garden, so we have some significant squirrel traffic. And there are fifty million squirrels out there. They were waiting for me, evidently, to bring Penny in so they could get a drink and squirrel fu fight at the bird feeder.

But there’s this body, here, that kinda smells like a squirrel, only now a little tiny bit cooler and gamier, I guess. So I can understand, where there is competition, a squirrel might take a nip at a recently deceased squirrel to see if this someone he needs to squirrel fu fight with for food. I can understand it, and if one did it, or two did it at two separate times, it wouldn’t have been disconcerting to me.

When five of the little bastards descend on the obviously weak one (though not so obviously dead, I guess) and give him a test nip so that his not yet rigor mortis set body is jiggling with their poking, it really kind of evokes a response like you’re watching George Romero’s Late Morning of the Living Dead Squirrel. Ew.

In other news, I got a card (or two) in the mail. From my ENT. Three months later, they have set up an appointment with the speech pathologist. Now, we cancelled our land line phone two weeks ago. They have my cell on file (but I mean, why look?) So in the last two weeks, they made the appointments (I see the speech pathologist, then the ENT. I don’t know why I see the ENT. I’m sure she’ll be in a massive rush, though) and just mailed the appointment cards.

I guess at least they didn’t forget about me… But my god.

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People Spotting

One of those things that Mr. Shoe has as an extra-curricular work activity is a “Taste” event. This is one of those things where a bunch of local restaurants come in and people buy tickets as a fundraising thing for the organization. Mr. Shoe doesn’t work for the organization, but his office does a lot of overlap and outreach and this particular group is one where the interests and target community mesh nicely, so teaming up means that this group can get outside help (and vice versa) and everyone wins… And that’s a lot of explanation that explains really very little. Look, it’s about networking, live and in person, and everyone wins. It takes a village. And stuff like that.

Anyway, it’s an annual thing. I can’t say that this is… I think last night was the second one I’ve been to, maybe the third, and I know Mr. Shoe has done at least five with these lovely people. I think you all sort of know why I’ve been absent.

It’s fun, though, especially because Mr. Shoe is a board member (heheheh, I said “board member”), which means he sinks in some money for a table or half a table and we invite people. Generally speaking, we invite more people than we have seats, as does the lady we normally split the table with, because neither she nor Mr. Shoe sit for the event, and a lot of the time last minute cancellations (usually me, I guess) means that the seats work out.

Mr. Shoe’s completely sweet cousin Ryan usually attends (as he did last night. A slightly more mature lady told him to never, ever cut his hair, because it is beautiful. Ryan is apparently a hit with the cougars.) Ryan usually donates some guitar lessons and computer maintenance time to the silent auction, which is cool. Ryan is a pretty damn kick ass musician. He also has beautiful hair, cougars agree.

I donated a framed print of a photo I took to the auction, which… brace yourselves, because this makes me go squeeee… someone that I do not know personally bid against someone else for and purchased. I mean, how cool is that? It’ll be hanging on some unknown wall, seen by some unknown sets of eyes. Or maybe single eyes. The picture had a boat in it. Maybe… you know, pirates bought it, and they all have eye patches.

It was tiring. I hurt. I am overtired. You can probably tell.

Here’s the thing, I have a problem. I get tired easily, and stupid little things, like sitting in a car and hearing the refrigerator buzz or a distant radio all take their toll on my system. So by the time I got the event, I was tired enough to really not feel like eating. That’s one of the first things to go. It makes restaurants hard, because then your server thinks you thought the food sucked, and you didn’t… But it’s a pain in the ass to explain.

Fortunately, at the event, no one notices if you can’t put it away. Mr. Shoe needs to realize that if I’m saying I don’t feel like that much food to start, marching back to the table with something covered in some of the stinkiest cheeses imaginable (I am not a huge cheese fan, sorry) isn’t going to help. It’s going to make me leave you with the camera bag and I am going to go take pictures.

I told the people I would. I kinda had no clue how they would come out (actually, I thought they’d all suck, but it worked out better than I would have imagined). It is one of those notoriously shitty photo situations. Big room, bad lights, lots of people moving at different speeds, weird windows… Courtesy of the flash I got some nice shots, but I also got a lot of really creepy/funny ones. I can see through the some people’s heads (right above the ear)… I can see the person standing behind them through their ears.

I also got to see some of the other types of magic cameras bestow. Like, carry around some beefy gear, and people will say stuff like, “You need to take our picture!” They don’t know who I am, where I am from, and I don’t know who they are or whether they want to know where they could see said photo after the fact. They just want their pictures taken, dammit. That was cool because they were lively and posed.

Then there are the people who see you, don’t say anything, but suddenly pose. They all huddle in close and smile. They had nice big smiles last night, so at least it was easy figure out what was going on. Some people don’t get that they are posing. It’s like the camera is in their peripheral vision, but suddenly they stand straighter, or turn away, or make the smile look “less dorky” (and yeah, less natural. But I too have a dorky on camera natural smile, so I hear you.)

You can also totally mess with people. They don’t necessarily pay attention to the flash, so you can put the camera up to your eye while they do something kind of gross… sneeze, spit into a napkin… and then they see you and the split second of mortification.

Yeah, with great power comes great responsibility… If I got anyone in a photo doing something gross, I swear I didn’t notice.



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Not Even a Cricket…


It’s been a long time for a lot of things, not just since I updated here.

This past weekend, dammit, Mr. Shoe and I trekked up to New Hampshire and visited my parental units. It has been an embarrassingly long time since we’ve been up (although I guess maybe it’s just shameful, but it’s not me or Mr. Shoe or my parents that are the targets of this shame, we’re just all collateral damage. I mean, you do what you can, and until now, it just couldn’t be that we made it up there. It was pretty difficult as it was, but difficult didn’t mean impossible.)

So Mr. Shoe and I went and stayed at the inn that is literally less than a mile from my parents’ house. See, I am up all night, every half hour. My mom says she doesn’t mind, but trust me, mom, you do. Between stairs and being up all night and all sorts of things, I thought maybe a trip up on one day, a visit with the ‘rents the next, and then a trip back would make the visit a much more… survivable, doable, pleasant thing. It worked. I mean, I feel pretty crappy, and I felt pretty crappy, but I don’t know that my current crappiness is necessarily due to recovery from the trip.

Funny as it may sound with that lead in, I guess it was a pretty good, successful trip. Hey!
Purity Lake

Plus, the little inn near my parents’ is nice, fairly reasonable in price (thanks to my parents living in the buttend of nowhere edge of a tourist area), and so falling out of bed at 6:15 made for some fun pictures (well, those were really fun, but the 6:20 ones were interesting too). This is not a penguin, like my mom has called them… It’s not a bufflehead duck, either. There is such a thing as a bufflehead duck, too — you can’t make crap like that up. It’s a hooded merganser. I think. It’s a duck that eats fish, so it’s sort of more pelican-y (or I guess maybe my mom is right in the penguin department. I mean, loons and penguins are in the same family). It also (how cool is this?) can change how its eyes refract light underwater.

Makes a creepy, loon-esque noise. Also, they’re very shy. And misty lakes are pretty.
Purity Lake
I’d update a bit more, but man, I’m beat.

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Don’t Look Now, But…

It’s one of those unsettling days where it seems like the neighbors all finally realized I’m soft as a peach and are speaking to me as if I don’t understand English. I mean… what the hell took them so long?

I wonder if my discussion with Penny as I came down the driveway, probably in a much louder voice than I realized, about whether she needs to, um, “poopanuba” was a clue. Then again, this wouldn’t be the first poopanuba discussion I’ve had with Penelope. I wonder if they aren’t getting louder over time though.

Thanks to some cooler temperatures and a surly attitude, Mr. Shoe and I went to a local historic/National Park Service run site this weekend (I felt crappy, but it was nice out and it was the weekend and dammit I was not letting that go). The place is the Saugus Ironworks, which is a reconstructed forge and iron processing plant from the 1700s or so. I suspect the visitor center is actually dates back that far (the stained glass kind of gives that away), but none of the structures or workings are… they were all rebuilt using period technology though.

It was rather cool, and I got some neat pictures. Also, there’s a bald eagle in the area — which came as a surprise and a kind of lucky shot.
Saugus Ironworks- Bald Eagle

Saugus Ironworks

Saugus Ironworks


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Rewriting the Dictionary

I like fall. Sure, it’s windy and I can’t breathe in ridiculously soft breezes, and cold temperatures make things stiff and somewhat achy (mostly stiff) for a lot longer than seems possible, but I can think. And if I can think, I can hone that expectation target beyond the next moment, and see that I can push through pain and stiffness (and turn my face away from the wind.) I tend to have a problem (like many people) keeping myself from then pushing that expectation window far too enthusiastically open far too fast. Then those setbacks really suck. I am getting better with that, and not letting that keep me from trying again. I’m not sure how many people around me (including doctors) are doing with it… and that’s damned irritating.

But at this point, we play the parts I know well by my rules. I know this part.

You know the “It gets better” campaign? I’m pretty sure, LGBT kids (both old and young) that it does. I mean, hell, if you’re a teenager, trust me, I don’t care if you’re attracted to steam powered mops, it gets better. It sucks being a teenager. A lot of this I think just comes from knowing your part and knowing the part other people play in the world.

Okay, in my case, physically, it ain’t getting better. It just… isn’t. It isn’t. We might not know jack more than we do. But I feel like at least everyone on board is trying as well as they can, and nothing has been overlooked (and my sweet GP, god love her, keeps looking at things that… well, we had a talk yesterday about a test that repeatedly comes back abnormal, and that she repeatedly sends me to the specialist for, who repeatedly says that yes, while it shouldn’t, it probably isn’t really worth looking at that closely every year. If the test comes back looking abnormal again, but not more abnormal, we’re skipping him this year. I don’t want to waste everyone’s time. Especially mine.)

There’s a lot to be said for feeling like my back is covered. I didn’t previously.

I got a call from the kind folks at Dana Farber (a big piece of the “my back is covered” security blanket) who are scheduling me with a neuromuscular person. I… have to get my records to them — specifically, the neuromuscular workup I had before. This is causing me a bit of difficulty. I think they just want those test results, but let’s just say getting the records faxed from Beth Israel Deaconess is a little like taking fire away from the gods. Yes, they are my records, but I can’t handhold the records people through the whole “print and fax” process. HIPPAA and all that shizz, they won’t let me back into the records department.

It gets better, you just have to redefine better to mean something within reason. I mean, it sucks. It sucks on a daily basis. And I hate having to settle, and I think that’s okay. But I have to settle or it’ll only suck worse.

Pffft. Growing up is dumb. But as I mentioned earlier, being a kid completely blows chunks.

So my sweet GP’s new office is by the old hospital (where I was born, incidentally, weird, huh?). At the foot of the hill the hospital is on, there is a pond and a cemetery (the old hospital was closed. I don’t know if the cemetery holds clues into the reasoning there).

The pond used to be really nasty. There wasn’t much of a walkway around it. There was always tons of mud, and trash, and broken bottles. And ducks. Stupid memory alert: When I was four, I had these awesome little China doll Mary Jane type shoes. My mom accompanied… someone to the hospital. My aunt? My nana? Anyway, while said person was at their appointment, we went to the nasty ass pond to toss bread to the ducks (dudes, it was the 70s, nobody knew that this was actually a horrible thing to do to the ducks).

Me, being a stupid little git, toddled out on to what looked like dirt to toss the ducks some nasty old hot dog buns. The ducks could walk on the dirt, but I couldn’t. I sunk in up to my mid-calf level, totally ruining the awesome China doll shoes. I also cut my inner right calf on something in the lovely mud. By the cemetery. At the foot of the hill that hospital sat on. Anyway. It bled. It bled like a sonofabitch. I still have the scar. (Physically, but hell, I guess emotionally, too. Mwahaha)

But with the closing of the hospital they cleaned up the pond (not sure if these things are related either). I guess there must be fish there… Because this guy was there just looking like a storm cloud yesterday.
I mean, a lovely mood he was in….

Duck! I said. DUUUUCK!

Wanna fight about it?

Know what happens when you feed ducks bread? Thirty years later, their progeny ends up like this:

Mallard Airs it Publicly

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Time Flies When You’re Having Time

That’s about the size of it. It is definitely easier to think when it’s cooler. Of course, the long weekend last weekend gave us crazy ass 85F temperatures, which… hey, you know, I tried to work with it, but it makes my legs turn to lead.

A lot of this supports the theory of some neurological paraneoplastic syndrome going on. Basically it means that my brain works stupid and tumors grow on stuff periodically, and a few different neurological thingees and malignancies/cell over growth thingees are associated here and there. And um… well. That’s about that. You watch diligently for the tumors so you can catch the deadlier stuff if it should come early (and that’s the silver lining, we know, so we watch). As far as the really crappy neurological stuff… um. They can try stuff, but generally, most of the time, responses are hit and miss. It might get better if they can identify the neoplastic process, but if they can’t, or if it has gone on for a while (and it has), then it might just be like this.

I had asked to be hooked up with a neurologist at the Brigham (sigh) just so all our records could be together and visible easily and no tests would be repeated because someone likes their lab’s letterhead better, but it seems Dana Farber is having a hard time getting neurology to respond.

And I really think there are like six nice neurologists in the whole entire country, and they know each other. One I have as a sleep doctor, one is Crazy Eddie, who referred me to another who could hook me in at Dana Farber… except Crazy Eddie is out here in the suburbs, and the other is at MGH, which… still kind of has a record sharing issue. It’s weird. I don’t quite get it. Everyone in the area can see notes MGH makes, but none of the images, and vice versa. Dana Farber and Brigham and Womens can access each other just fine, but… man, I just think there are administrative issues at the Brigham that make everything a living hell for everybody.

So I’m wondering is it worth being a pest to my poor peeps at Dana Farber (I mean, they can’t get blood from a stone either) or is it just better to go see Crazy Eddie, who I know, who knows me, and just have to deal with shuffling papers and records and try to navigate the waters if tests are ordered that someone else might want to repeat at their facility. I have had less than good luck with any neurologist at the Brigham even being remotely human. I mean, they seem like they’d do better guarding some toll bridge off on a mountain side most of the time.

I’m debating that, and I still haven’t gotten the speech pathologist appointment call (let’s not get me started) so I’m going to wait till November when the one in house at the Brigham is back. Nobody seems to want to work with the Brigham. I’ve had some pretty damn good doctors there, but I think the whole other end of the process — hell, I know — is just completely eroding any real inclination for patient or resource sharing. That blows.

Meanwhile, we do what we can… which some days is more than others.

I was tickled by this heron that was down near the river by the highway where my sleep doctor lives. Okay, I’m sure he doesn’t live there. There are beds at his office, and showers though, being a sleep lab and all. That sounds like a pretty fine workplace.

Except that I’m a librarian. Anyway.
Penny's Dad is a Nice Dad

Other days, Mr. Shoe needs to carry you around. Trust me. Thank god he doesn’t have those silly little tyrannosaurus rex arms.

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