Brace yourselves

Almost a year since we last spoke, Mr. Blog. I at least kept the  WordPress installation up to date.

So, uh, yeah. Last year: good news was there is no need to do a craniotomy. Bad news is they can’t fix me. So that was a shocker. Not.

Good news is that the calcifications in my boob probably aren’t an indication of cancer, but they didn’t get them all during the biopsy,  so I see them next month for the repeat screen.

Bad news was that Lola’s very sudden limp was indeed mammary cancer. It was aggressive. It was fast. It was shocking as up until two days before the first biopsy procedure she was so healthy. She didn’t recover from the second surgery to try and keep the biopsy site closed. I also think I will never not burst into tears when I see a Boston Terrier.

We adopted a Boston/Chihuahua mix (a Bohuahua) and renamed him Eddie. He is awesome, and just as good with Penny. His first mom had to give him up for health reasons (hers, not his) and it’s just so nice to know (and it’s so obvious) how loved he was. He is a sweet, sunny boy.

It’s funny because we adopted him for my health reasons. I walk stupid, and it’s getting stupider.  But I should walk, I like to, and I like to really early in the morning.  I do better that way. So I kinda wanted a buddy who was a walker and who was large (and despite the mix, he is larger than Lola in both height and weight… and Lola, as the emergency vet tech said, “is solid and half pony or something.”) Eddie isn’t a morning pup, but I think seeing more rabbits as spring comes might change his mind.

I am seeing a neurologist about the disequilibrium and wobbliness. Doing more balance tests… he’s suspicious the whole picture is a genetic thing… from sleep disorders to tumor growth. Also, can’t do a whole lot about that, but being able to chalk this crap in large part up to something that is documented on imaging and stuff would be nice, because truthfully I feel like I have no right to feel the way I do.

And I do.

Also have a very wonderful friend-  she worked at Dana Farber, she yelled at zoo going adults who told lies about the animals to children, she was never too sick or tired for a poop joke or two, and she too loved the Hood blimp -who is so sadly leaving us way too prematurely.  She’d also like that my tablet suggested “ejaculation” before I even completed typing “premature.”

Her name is LimeyG. Seriously, that is her real name, but when she came to the US they said she had to give a proper name so she chose “Carolyn Grantham.” Sounds suspicious to me, but hey.

I am so happy I got to know her and that we became friends, although it sucks giant monkey balls that the main reason that happened is because our health situations are lame. We still got to meet in person, just a couple weeks ago, because… because. Love doesn’t need no reason, son.

Whatever’s up next,  Carolyn…  please tell them Korrak sent you. Seriously,  lady, you’ve made so many difficult things so much easier, and I hope I did the same once or twice. Or more than that. You give em hell. I’ll continue to do the same in this dimension.  Thank you.

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I Know But I’m Not Gonna Tell…

I know, everyone, brace yourselves. It’s an update.

I… forget completely where I was in this whole extended timeline when I last wrote and the truth is I’m a lazy ass and I’m not going back to look. I know, right? I was referred by my hurried, harried ENT to the other ENT, after a CT scan. There was some conductive hearing loss, blah, blah… Are you still dizzy and falling over and stuff? Blah blah.

And I, my friends, I do not believe these new fangled audiograms. I do not believe they will find what they think is there. I do not believe that this probably isn’t going to end as a total flustercuck. But then… then some itchy little bastard gives you hope and you start to think it sure would be nice if they are right.

I saw the new ENT last week. First… in getting the referral from my new GP (who is nice enough, but I need to switch hospital networks. This is impractical at best and worrisome at worst), the referral assistant had to ask a crapload of questions that I know that insurance and the hospital networks required her to ask but I’m even more confident violated the hell out of HIPPAA. One of the questions she asked was, “So, you mean your current ENT isn’t capable of handling this problem?” (Please read this in the snottiest tone imaginable, not with the fear and awe I thought it with when she referred me.) I really wanted this woman to call my first ENT and question her skills. I’m sure that would have gone over wonderfully.

This new ENT was a nice guy. I am glad to say he didn’t tell me I just had a raging middle ear infection, or allergies, or crap in my ear. I get worried when they tell me they have a pretty good idea what’s going on.

I am glad, that at least on the top few surface layers, this little issue is not directly related to the growth in around my pituitary and eyeballs and stuff. If it is related, it is probably in about the same way as people who have, say, knee problems occasionally also have other joints and stuff that are crappy. The bad part is they aren’t sure what causes… well, hell, anything that seems to be happening with me so it’s kind of hard for me to buy a lot of what I am told.

I seem to have a teeny hole in my skull over my semicircular canals in my left ear (or at least really thin bone) which means there is an air/fluid/vibration exchange from my inner ear into my brain. The CT that was done looked to me like it was done on a vibrating table (it was pretty poor, if you ask me) but he could tell that there was thinning, if not absence of bone, on that side. The right side looked fine.

So this can indeed explain a lot of what I experience, and it can be fixed. It is why I keep getting motion sickness in cars (sea legs more than nausea). It is why I look up when I walk and I start staggering. It is why my voice is so damn loud in my head but no one can hear me (I still think you all need to clean the crap out of your ears though.) It’s why I can’t hear the TV over my chewing. It is why the wind makes me walk all drunken monkey like. It’s why my vision bounces all over when I walk fast or run.

Maybe. This is thing. I don’t know. I don’t know as I believe that. I think it plays a role, and given how the hearing loss is new and the rest is getting more prominent, maybe it plays more of a role than I would think.

Something sure as hell is debilitating. I can’t go for extended car rides. I can’t listen to the TV too loud. Headphones are absolutely horrific. I don’t mean that it makes my ears hurt, I mean it makes my brain stop. I have said this. I said it first five years ago. I said it last three years ago, because I got really goddamn tired of being told that it was anxiety because goddamn it, it wasn’t. But I was too tired to have the argument anymore. It couldn’t be fixed, and it is better to shut up and just deal with it, because it is draining. The balance is the biggest deal for me, and I don’t know how it might affect my fatigue or even pain levels. I suspect it does, but I don’t want to overestimate this. I just don’t know.

So, I said they can fix this, right? Yeah. Some words should not go together… like “minimally invasive” and “craniotomy.” You can pair “suck” with “craniotomy.” This is not a nice thing. It is a big deal. It is a huge deal. If my thymectomy is anything to go by (also a minimally invasive absolutely horrendous massive ordeal type of surgery), I could spend the better part of a year just recovering from the procedure. Except… this actually has a decent success rate in dealing with symptoms, where a thymectomy is not a curative thing. Especially if you have no idea why it’s enlarged.

Is any helpful outcome worth this risk? I’m inclined to say yes, even though I hate the idea of it. The thing is, this isn’t going to get any better on its own. It is possible I could go through that procedure and take the annoyingly long time to recover that I imagine it will take and just be like this. It is possible there could be complications (but they do seem to have made leaps and bounds, which is neat if still not wickedly comforting). I could only see marginal improvement.

Marginal improvement might mean I can take a car ride for an hour without being horribly ill and needing two days to recover. It might mean I can go up to the second floor of the house – and oh my god – get back down the stairs again. I mean, on my feet, not scooting down each step on my ass like I have to currently.

Also, my brain will be exposed to open air. Scares the crap out of me, and truthfully, I still have to get the annual follow up MRI of the other mass. I know it is apparently unrelated, but I can’t help but feel priorities would be there first.

Anyway, I am following up at Mass Eye and Ear in the fall. We need a better targeted image and the E-ENT was pretty hip to the idea that reading and thinking would be done prior to any decisions. It’d be an easier decision if I knew what I was experiencing — and how much of what I am experiencing — is clearly due to this. I have no quality of life. That’s it. I said it. This isn’t living. But this is still a hard thing to just say “sure, go on in.”

It says more that I’m considering it this seriously. Eeep.

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…or it’s a lie? I don’t know.

Know what totally sucks? Well, several things, but the main one being I went to write something here and the computer’s on and I’ve no damn clue what it was I wanted to say.

So my sweet GP is at her new practice, pretty far away. And as much as I love her, I was debating whether I was going to seriously want to travel that far. My mind got made up for me, though, in a really sad and unfortunate way.

You know my sleep clinic is one of those doctor’s offices I just have the ultimate respect for. The medical assistant I totally loved (this lady ran a tight ship) left and was replaced by another who… well, I think she wasn’t the most awesome on the phone, because she seemed pretty decent in person. And that was pretty much the only fault I could imagine with the office… you know, the new girl wasn’t quite able to fill the epic shoes her predecessor wore right off the bat.

So I had to call them to refill my prescriptions, like I do every month. Because people are douchewads, I needed to have a hard copy mailed or we needed to pick up a hard copy of the prescriptions… Because evidently, not allowing auto refills and giving someone a piece of paper is more secure than encrypting something sent to a pharmacy. Whatever.

So I call. And several hours later, I get a call back. They are closed. For good. Not just their clinic, all their clinics. Everyone was let go on Wednesday. I should have gotten a robocall on Friday, I guess. I didn’t.

Okay, first, I’m freaking out because these prescriptions aren’t ones anyone wants to fill. Then I’m concerned because I can get them filled, sure, but I know damn well nobody wants to manage them that isn’t a sleep specialist. And apparently all the sleep specialists are out of a job in my area. I am sure they’ll get sucked into some neurology and pulmonology departments, but really. Really. I don’t want anyone to be overseeing these things that doesn’t feel comfortable doing so. That remains a long term concern.

Then… as I’m starting to sound a little freaked out I realized the poor lady on the phone… the one who scheduled me there for the first study like fourteen years ago… is starting to sound really, really bad. I worked at a wire service in the 90s (about the time of my first sleep study, hey!) and as the dotcom bubble burst we had people in PR and marketing calling in with press releases that essentially announced their unemployment publicly. That was harsh.

That was nothing – nothing – like this. And I thought, my god, I need to get my head out of my ass. I told her, “Oh my god. I am so sorry.”

She just kept the sobs out of her voice. The place was evidently financially somewhat strapped, but it would seem no one was clear on how strapped until they were told — doctors, nurses, administrative staff — not to come in the next day. She was there with a few others to shut things down. She was there at the beginning. And hell, I feel for her. Which just made the following “oh shit” scramble worse for me.

So my sweet GP knows me, but she is far away and I can’t get in to see her that quickly. I am still officially at her old office, and have a new GP there. Mr. Shoe is going to be away mid week through the weekend. My sleep doctor is out of work, and for all I know has all his worldly belongings tied up in a hanky on a stick and is jumping on CSX trains heading south to pick oranges… I doubt it, but humor me. He’s not reachable.

At least it was pretty much all the sleep clinics that closed, so I wasn’t the first call and won’t be the last. But (and this is a good thing) I need to see the new GP before she will refill (and that is a good thing) so what would have been routine or even more workable if things hadn’t gone this way and Mr. Shoe wasn’t going to be away is suddenly a lot less workable. And that doesn’t make me feel any more secure about what happens next. I don’t want to have to go in on a monthly basis… but this new GP doesn’t know me, we have no history. I can understand completely why she might want me to.

Plus, I don’t think I can handle all these new doctor patient relationships. It’s a long and complicated story, being me. I don’t think Dr. K will be accessible any time soon, even if he stays in the area. So I feel like that might really color how far away my sweet GP is when all is said and done.

Oh Yeah, The Other Thing

Speaking of new doctor patient relationships, I had my ENT visit. I love the ENT. No, I hate going there. You know that. It’s not that I don’t like the ENT, or the audiology or speech people or the front office staff. I actually have found them to be quite pleasant if way too rushed or completely confused from time to time. It happens. I just, for whatever reason, hate going there.

Went in for the hearing test. I’m such a moron. I’m like, I wonder if the audiologist knows that the left earbud here is all quiet and muffled and stuff? I’m actually thinking this and I didn’t put it together till the next day that it was because I couldn’t hear. I have some conductive hearing loss on my left side. I guess this is why I feel like I’m yelling and everyone says I’m mumbling. I guess it’s also why I can’t always quite make out what people are saying on television and stuff. It could be partly why I’m still sort of unbalanced (physically. No accounting for the rest.)

I guess conductive hearing losses in adults are usually some sort of obstruction… Of course, had my ears looked in and such and nobody saw quarters or wax or bugs or anything, nor any obvious infections, so I get to go have a CT scan of my temporal bone (again) and then get to see the ENT who, as my ENT said, is really into E. The EENT. I guess he is a surgeon, but who the fuck knows what is actually happening in there (the ENT didn’t say that. It’d be sorta hilarious if she had though).  So we’ll see. I don’t expect miracles. But I have another person I get to try to go through my history with before I get overtired and the office visit time allotment runs out. I am thrilled over that.

I totally just got handed off though, eh?

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Hey. Look. I am testing out posting from a Galaxy Tab 2 tablet. No reason to think it shouldn’t work.

The tablet story is a long one. It involves Mr. Shoe’s old phone, a long Black Friday, a choice between a turd sandwich and a turd sandwich with Nutella, and ultimately a sales rep who redeemed Verizon Wireless for us… Well, all mobile carriers suck something fierce, but they don’t all have sales staff who are willing to go above and beyond.

A seven inch virtual keyboard is still the pits, even with Swype.

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I Voted

Wait, no, I haven’t yet. Later. When we lived in DC, Mr. Shoe got an “I voted” sticker, which we promptly stuck on Monster the surly peke’s ID tag. If Monster had voted, the little bastard would have totally written himself in. And good on him.

We live in Massachusetts. Let me tell you about Mitt Romney. His hair scares me. Honestly, having to see his hair in the paper (with his face under it, I guess it would be a lot scarier disembodied) was probably the worst part of his being governor. He wasn’t anything special. He wasn’t horrible. I like Deval Patrick better.

Everyone can say otherwise, but truthfully, I pretty much think Obama and Romney are the same dude in different wrappers. I like Obama better (not because of his hair). I like him mostly because when he gets all pissed off or emotional, he looks presidentially pissed off and emotional… Like he is going to rip you a new one verbally and you had better not make him take further action against you. It isn’t hysterical pissed offedness, it’s… He’d make a good horse trainer. He looks like he’d make a good horse trainer… And Romney, alas, looks like a horse trader. Maybe not a shady one, but…

The hair. Oh god no.

Health care is of course a huge issue for people this time. Yeah, well, again. I live in Massachusetts. And I feel like in either case, whoever wins, nobody wins. They’re all doing it wrong, but no one asked me. I wonder why.

One of my favorite stupid terms that has been thrown around in the state races here between Elizabeth Warren and Scott Brown is “Big Oil.” I love to picture all those poor little mom and pop oil refineries that used to line the streets here in the good old days that had to shut their doors due to Big Oil. What the hell, people? That’s right there with “clean coal.” What is this supposed to mean? These friggin’ phrases don’t mean anything. Hello?

“I support jobs and education and safe work environments. My opponent wants to fire you, put you into indentured servitude, keep your children dumb so that they don’t realize he’s fattening them up with candy and pie in order to eat them when they inevitably have a serious accident at the oil refinery that replaced the one your grandpa used to run.”


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In Case You Wondered

We did not float out to sea. I thought something yesterday, however, that I never would have dreamed I’d have reason to think, especially living in Boston:

The annoying loud sounds of these sustained 60mph winds from this hurricane sound a lot like the annoying loud noise that earthquake two weeks ago made…

The hurricane was less annoying sounding, because there was at least a wind like crescendo to it… the earthquake rumble and noise was worse because I thought for a minute, “Who the hell broke the wind?”

Oh god. What did I just say? That was unintentional. HA!

Our house came through just lovely. The lights flickered a bit, but we didn’t lose power. Lots of trees came down (I have lived in the woods during good wind and ice storms, and I haven’t heard this many trees coming down. I didn’t think there were this many trees in the area). None came down on our house or car or fence, although we have neighbors just a few doors down in all directions who were not so lucky.

It rained. A lot. It’s actually still pretty soggy and I should clean the storm drain but I don’t think I have the strength to lift the shovel and I don’t think we have any leaf bags, so it’s kind of… well, pointless to try, dump the half the debris on the sidewalk (on Halloween, no less) and then have it just plop back in anyway.

Oh… the coyote in our yard… Yeah. They had to dispatch him. I had to laugh because the city saw the need to define dispatch. Then, the next night, we ordered pizza from Dominoes (no, you jackwads, coyote wasn’t a topping), and the local branch called to let us know that our driver had been dispatched. I was wondering how on earth we were going to get our damned pizza then… But evidently, it also means “out for delivery.”

Think about it… our pizza left its maker so we could eat it, technically then, meeting its maker as well. We didn’t eat the driver. We merely tipped him. I suppose he righted himself, as I didn’t see him stuck in the storm drain.

I thought I’d throw these wonderously deep thoughts out there, in case you were curious as to whether we’d fallen into the Atlantic.

Thankfully, no… And while I am so very glad I am not in New York City or the New Jersey coastline, some of the photos coming out of there — not the stupid ass Photoshopped ones (incidentally, one of the shark photos at least is real… it just is a few years old) — are just lovely in a creepy way. I love the flooded parking lot of yellow cabs. I mean, it sucks, of course, but man…

Still, it was pretty wild here for a good twenty four hours (and we had a screamer of a thunderstorm last night, a full day after the fact) and I’m pretty sure this is about as close to that sort of action as I would ever want to be.

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I Visit Once a Month

Hehehehe. This is why you can’t take me anywhere.

So… run down of the past month. We were invaded by Germany.

So today we were invaded by Germany

Yeah, and so that happened.

Then, I was taking Lola out because she smelled funny (as is the case often enough), and I was like… Damn, who has their honking huge dog off a lea– Oh.

Wipe my glasses off. Wiggle my limbs, make sure I’m not having a stroke or something. Nope. It was a coyote.

Of course, they are all over the area. We had seen one a few days before at the site of the German invasion, even. (That one looked less bedraggled). But they don’t quite come this close in to our area because… well, it’s a little too built up. Unless…

The coyote started to walk. He’s been in the area about a week, with multiple sightings. He is commonly referred to as the tripod. He’s got a limp. It didn’t seem to be slowing him down much, and I expect he probably is doing a lot better here than some of his able bodied friends in the marsh (which I suppose is where he crawled away from), but as the animal control officer said (yeah, I called. Felt like a doof, but I figured at the very least this might be one of those things that they want statistical information on) they tend to either come out here in these parts because they’re lost, there is something amiss in their more appropriate home range, or they’re coming out because they’re injured and going to kick it.

At that point, the obvious question was (well, to me… I didn’t think he was going to put down traps or ridiculous shit that people seem to think animal control does, and the injured beastie was no longer here so he couldn’t get hold of it anyway) if he should turn up dead behind our shed, what should we do with him? I mean, they say you should just bag and set squirrels and raccoons on the curb. The coyote would be a bit large for that sort of thing. I guess they do pick those sorts of things up.

I haven’t seen it since, but it’s been getting around. I actually think it’s kinda cool and I’m rooting for it. I don’t let the dogs out off leash and while the coyote is limping, it sure didn’t seem different behaviorwise from when I saw him to the last reported sighting, and I’m pretty sure that if it had something you’d need to worry about (like rabies) it’d start to be evident.

Remember our rabid chipmunk? So sure that thing was rabid. It was terrifying. This coyote sighting was weird, but not horribly scary. That chipmunk scared the living crap out of me.

In other news… Got to go to Dana Farber and have some scans done. So I still have a gaggle of lung nodules that are small, but they look innocent and unassuming. No one feels that biopsies there would be informative. (I am glad of this. They are in a location that the normal bronchoscopy would not reach, so it would mean an incision through my chest… if they aren’t looking suspicious, leave them. Even if there are more non suspicious ones. Last chest spelunking was horribly unpleasant and I trust their judgement on this.) So okay. And my abdomen and pelvis don’t look like they’re harboring great surprises. Also good… I mean, not good because I still feel horrendous, but I’m also not surprised that nothing is visible. I think there will be sooner or later, but the fact that it is still being slow about it all is also… well, it is actually a good thing, even if fundamentally it sucks.

I told Dr. J I tried the Robitussin DM but it was sorta useless. He prescribed some other stuff (tessalon, it is) and said to take it with the Robitussin. Because I obviously got my medical degree on the side, I said screw that and just took the tessalon. It was a little helpful. I figured the Robitussin was mainly to help clear out any lung frick that was possibly settling (and I have no reason to believe there is phlegmy crud settling).

But then I started to feel a bit drippy in the nose (the wind was blowing all sorts of leaf litter around) so I thought just to be safe I’d take it, you know, the way the doctor intended it to be taken.

Wow. I have no idea why, as I have no mucus in my lungs, but for whatever reason, when I take those two things together, my cough improves massively. I still have it, but it definitely is a less violent, nasty, spasmy, ongoing event when it happens. So that’s something, I guess. Because the cough was beginning to get embarrassing. Hey, everyone, no, not contagious… No, not making a rude subliminal social commentary on your a) smoking habit b) car c) perfume (but please, do us all a favor and just use soap regularly, all right?)

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I Suck at Updates

I guess we all knew that. Shrug.

So, when we last left me, I was coughing. Guess what? Still coughing. I saw the lovely folks at Dana Farber last week. It’s kinda funny because Dr. J asks (I mean, he has to ask, I know) if I had told my primary care this whole thing. Well, yes and no. I mean, it took a bit to piece together that what I was feeling was not just a fleeting thing, which I had pretty much done by the last time I saw her. I just couldn’t quite… Well, things didn’t seem to be converging in such a manner that I could do more than say, “I suck.”

We all know that.

There was also the very stark fact that she’d tell me to tell him when I see him. She called me on the fact that I am more than a year and a half late on my chest imaging, but she’d be the first to agree that really, it would’ve been dumb to have it done out here in the suburbs. And she’d probably send me for a pulmonary function test, which is pretty unnecessary. Let’s put it this way: my lung functions have decreased over the past couple years, but they were actually so damn awesome to start with, it isn’t… well, my lungs seem to function. It’s all the stuff around them that seems to make that harder. Is it muscular, is it fluid buildup in the tissue, is it something else? Maybe, but I’m pretty sure that when they hear nothing in my lungs making pops and cracks, it’s because there’s nothing in there making pops and cracks.

Why go through that?

I also felt (you can see it, truthfully) a lump on my neck. Dr. J is obviously a bit better with the whole lump identification, and he thinks it’s probably a muscle that is bulging weird. It doesn’t hurt, but given the way I am, I sort of wonder if I didn’t pull it or tear it or do something to it with the coughing and now there’s this knot there. He said it definitely doesn’t feel lymph nodey. So that’s good.

However, I still feel asstastic, and I am, as I said, a good eighteen months overdue for a chest CT. Every time I eat I feel pretty barfy, and it just generally sucks. So Dr. J said to try Robitussin (it doesn’t seem to be doing much thus far… and he said in this case I should call him, but y’know… I feel weird about it). He also ordered the holy triumvirate of torso CTS (my chest, abdomen and pelvis). I am mildly surprised by the pelvic order, as I did have that done about six months ago. I’ve never had a mass in my abdomen, but I also guess it’s just as likely something there could mess with my chest and that’d be pretty weak to miss it. Might as well do it all at once.

I was given the option to wait till December so the ENT could follow up (right, her patience with anything stops at the trachea. She’s even a little too rushed for that sometimes) but that’s kinda a ways off and I do feel rather, you know, shitty.

Problem was, Mr. Shoe has a busy week this week and the sad fact is I just didn’t want to go back in and do it this week anyway. So in a couple weeks I go and do that.

I doubt that there will be anything terribly enlightening, but maybe there will be changes. I don’t know. I know that this was a long, slow process last time and I know that that doesn’t mean that’ll be the same this time, or that this won’t recede some and then kick in again all fresh and new in six or eight months and then be a problem. I just don’t want them to have to go spelunking in my chest again. That blew.

The cough medicine I got is clear. We have on occasion given Penny the same type of cough syrup, only for some completely idiotic reason we got the cherry flavored red crap. So Penny and the floor and the walls ended up covered in sticky red cherry scented syrup for varying lengths of time. Why the hell did we do that?

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Design Flaws

I have never been great at coming up with titles or headlines. Sometimes, however, things just lend themselves a title. That’s great. Other times, I just look around and shove a title on things based on what’s in front of me. Right now, I could have titled this post “Mr. Shoe is peeing with the bathroom door open.” But I didn’t. I am classier than that.

This post title is kind of subconscious. In a way, don’t want to get into it too heavily, except that when I was told by the surgeon and by Dr. J at Dana Farber that thymus stuff can grow back, I think I thought they were kidding. I mean, if I lost a finger in a hideous meat cleaver accident, that bastard wouldn’t grow back, would it? So the question is how do you know… you can’t see your thymus.

Okay, I don’t know, but something is really not right, and something is really not right in the same way as it was in the months preceding the thymectomy.  Removing the overgrown brute didn’t really fix much overall, but a few things were immediately apparent: I stopped shooting water out my nose randomly (well, I only shot water out my nose while drinking… I wasn’t like a motion activated sprinkler system. Heh. That would be cool). While this hasn’t been as prevalent as it was a few years ago, it has been happening more.

I stopped coughing as much. I mean… I never stopped. There was a nagging, single or double cough a few times an hour. Now… It’s not a few times an hour. And it can get going. That’s been on the increase for a couple months.

Mostly, though, the feeling of getting whacked in the chest hard with an invisible dodgeball — the sudden sensation of getting the wind knocked out of me for no apparent reason that is actually strong enough to cause knee buckling — has returned with the hoarseness. It’s definitely not a hoarseness from coughing… it’s really low down in my chest. Sometimes you can hear it. And those are kind of the clinchers for me that it isn’t merely the heat or the humidity.

So the overall picture is something is screwy in a real nasty way again, but I’m not sure what or why, but I have really good evidence that it is. We’ve been here before. It isn’t nice, but I’m in a better spot in terms of knowledge and medical help now. I don’t know if this means that the whole process is kicking up to a new level of activity, or if it means that there’s something growing and visible somewhere. I know that this tends to be slow, and since I have a follow up next month with Dana Farber, we’ll just deal with it then. If they find something, okay. If they don’t, it’s probably good for them to know because something is afoot.

My gums have been really pale and bleedy. Not when I brush, alas, and not constantly. I’ve been a little slower to stop bleeding with the inevitable “ah, shit, I just snagged my arm on a nail” or “I’m so damn itchy” moments, but that’s just a little slower for me, which is probably quite within normal limits for most people. And it isn’t all the time. Well, the gums aren’t all the time. So I’m kind of getting the impression that I have something that I’m managing to keep fairly balanced in terms of anemia or whatever but that is still sort of fluctuating and unhappy with me.

The good part of this — I know, holy shit, brace yourselves, a good part — is that since starting the diltiazem for my blood pressure, I’ve had both better blood pressure and been a lot less likely to turn purple. Diltiazem I guess helps blood oxygen saturation stay stabilized. I can assure you wholeheartedly that I would be blue constantly given how I feel right now without it. And I am not. I will get really short of breath tying my goddamn shoes (and I do, regularly), but it’s actually a little less tiring and a lot easier to recover from when the blood oxygen levels haven’t dropped enough to make me turn weird colors. Normally I’d have to sit and breathe for a few minutes until I felt better (and then got pinker). Now I just need to stand up and inhale deeply. I’m still totally bagged out, but it isn’t as bad. Plus, if I don’t turn blue, people are less likely to freak out and call the ambulance or tell me I should stop physical therapy until that problem is addressed.

I’m not sure the problem is addressed, but it is making life a little bit easier. And I will so take it.

It’s been kind of a pisser of a summer though. I mean, yes and no. I feel okay with where I am in a certain way… That being said… My sleep clinic had the most awesome medical assistant. She’d get me the hardcopy prescriptions for things without making me feel like I was a criminal. She had a baby, and I’m happy for her, but dammit, babies ruin everything. Haha. I’m such an asshole. Anyway, she was replaced by someone who, um, can’t promise she’ll automatically mail prescriptions or even tell my doctor that they need refilling in a timely manner (why do you email a note to a doctor when he’s sitting right beside you? Because you’re an idiot!) So I’m bummed, because honestly, it sucks to feel like you’re doing something wrong when you need a prescription refill. I don’t want the doctor’s office making me feel that way — the government does it enough. Thanks for nothing, DEA. (Never mind I don’t get why handing a person a hard copy of a prescription for a controlled substance is more secure than sending it through a dedicated channel from doctor to pharmacy with maybe some watermark as well as the doctor’s DEA number, but hey, whatever… I love the idea I could get jumped for the paper in my hand.)

Plus… I knew this was coming. I knew earlier this summer, but it came faster than we had imagined. My sweet, awesome GP is leaving. I mean… good for her, because when you have to storm out of a meeting and the administrators say to your colleagues, “Oh, she’ll be back, she’s just being Dr. –,” then you know your work environment has gone to hell. You really know when they say that after you leave for being told you’re going to have to take a 20-30K per year pay cut.

I wasn’t supposed to know this, but um… I had the appointment after said meeting. I told her that being a medical professional is a noble profession, but fuck all that, she comes first and it’s really hard to do a good job if you aren’t supported. It was a wicked Ayn Rand sort of thing I said, but in this case, my sweet GP wasn’t being an asshole protagonist, she was just seeking to maintain a balanced life that makes her a better physician.

She is going to another practice… Further away, but not out of reach, and one that actually shares a medical record system with Dana Farber and Brigham and Women’s and such, so truthfully… I’m following her there. That’s another thing I wasn’t supposed to ask and she wasn’t supposed to tell. But I did and she did… Because she knows me, and that means a crapload.

Also, I can’t see that the practice she’s in now isn’t going to become a revolving door for doctors. I need someone who knows me through the iterations that come and is able to recognize and say to me (and other doctors) “I know this broad, and right now, she looks like shit.” Yes, I have thanked her for telling me this before.

So there’s that.

Anyway, aside from my physical design flaws (I have mutant thumbs… Look at them!) The other day I ordered a fancy schmancy wireless mouse. It’s a lovely Microsoft limited edition deal… It has a dragon on it. I know, right? A friggin’ dragon!

I get this sucker out of the sadistic packaging, and there are all these lovely warnings about not staring into the laser on the mouse, and to preserve eyeball and battery life turn off the mouse when not in use. The battery compartment is on the underside of the mouse, as is the off switch, as is the laser. I would think, you know, given all those warnings, that maybe the factory would ship those bastards with the power switch in the off position. I would think this because as soon as you stick the battery in, you are immediately blinded by the blue light.

But they don’t do this, evidently. Took a good five to ten minutes before I lost the green foggy cloud in the upper left side of my visual field. So thanks for that, Microsoft hardware folks. It’s a pretty mouse, and I’m really glad I still have rods and cones left with which to behold it.


Posted in Langerhans Cell Histiocytosis, Not Otherwise Specified, Photos, Hobbies and Worthwhile Stuff, The Bad, The Ugly | Leave a comment

Oh, Joy!

Just noticed it’s supposed to be 99F on Saturday. Who says you need to die to go to hell?

I am doing one of these annoying blankety updates because… well, I don’t get around to this much and then when I do there’s all this stuff I could say that I should have maybe written about earlier and I didn’t.

I have a new laptop. We’re not saying any more about this. It’s nice… it’s really nice. But details are purposely scant because I am so not into tech support at the moment.

I haven’t seen the GI guy again yet, but I guess the manometry was normal enough. At least, that’s what my sweet GP was told. I suppose that means that my esophagus is sluggish but muscle tone is within reason. I am glad I had two barium swallows showing the same issue. I’m also glad I don’t need surgery. I really hope I don’t need to have the manometry done again. Ever.

Also, my sweet GP started me on a calcium channel blocker two months ago. It was good — I mean, hell, lowered my blood pressure when nothing else would. The problem started about two or three weeks in when my legs started blowing up and I got all weird and bruisey looking. I always have a swollen left leg, when I wake in the morning or when I go to bed at night. (The rheumatologist found that worrying, actually). It only hurt in the morning occasionally. But suddenly I could not get shoes on… my “fat” shoes, even if I didn’t tie them. Yeah. That swollen.

They didn’t hurt so bad, but I’d definitely feel like my skin or blood vessels or muscle or something would pop or spring a leak or something, and it would sting and be kind of painful in a pinprick way. I also gained a good 7 lbs overnight.

So finally my blood pressure is in the 118/80 range. Yay. But my sweet GP didn’t like the effect on my legs and hands (they were swelling too). So I am on another calcium channel blocker which is less likely to cause that sort of crap. It is also known to lower heart rates and stuff, and I’m on a beta blocker also known for that… except that it was doing a shitty job of it, really, so we decided to try the diltiazem. So far, blood pressure about as good as on the amlodipine, the swelling isn’t getting worse, anyway, and my resting heart rate is not so alarmingly fast that it would prompt doctors to ask if I had remembered to take my beta blocker (which is what used to happen). I think it should help with the shortness of breath and swallowing issues (the GI doc suggested we try it) but it is one of those things that that might take a while.

The dogs hate the heat. I am glad of this. I feel bad though, because Lola doesn’t realize that it’s messing her up… she goes out and says, “ZOMG! Look! A woodchuck!” and gets all excited and then in less than three minutes is damn near having a heat stroke (seriously… she’s bad. I have had more occasions to wonder if I haven’t accidentally killed her on days that the heat isn’t bothering me all that much.)


ZOMG! A woodchuck! Poor Mr. Shoe. But I swear that the woodchuck likes cucumbers more than I do. I wasn’t going to stop him.

Penny gets noticeably hot, but since she doesn’t move fast and such, if it happens, I find it is better for everyone if I just pick her up and haul her in. She’ll sit there and tell me she’s hot, but not move, and fortunately, while she’s portly, I don’t have far to carry her usually.


Nothing to do with Penny…. But look, there’s a woodpecker. Okay, I’m done. Even if I’m not. Trust me on this. I’m a professional.

Posted in Langerhans Cell Histiocytosis, Living with, Photos, Hobbies and Worthwhile Stuff | Leave a comment