Did I Do That?

It’s hard to make sense when your browser keeps crashing. That is all. Also, I think I might have possibly — possibly — caused my little constant crashy problem. I don’t know. Because the problem is, when it goes, it really goes. Like eight or nine times in a ten minute period. And then I can be online for a half hour without a problem.

I was trying something else out and remembered what a friggin’ horrible pain in my ass it was to get Ubuntu to install. I am slightly suspicious this had something to do with my original hard disk failing, and my swapping it out for another one. I am not sure why a new version of Ubuntu with a slightly larger, but essentially same in every other way hard disk would cause these problems months later when an update to the OS was required, but…
Blue Jays

Look at the damn birdies! (Yes, I am trying to create a problem, and of course, I can’t. It’s like me at the doctor. Or cars at the garage.)

…but to get Natty Narwhal (Nihilistic Narwhal… come on, can you think of a better animal than a narwhal? No, me either) to install I had to do Cirque du SoLame like backflips through my BIOS. Now that it’s installed, would those changes cause any problems?

I think they were. The laptop was a lot faster booting when I started to tweak, and so far, so good. I’ve said that one before. But I had to slow my drives down to IDE speed to accommodate the CD drive, and my drive is a SATA connection. So I didn’t need to leave it there. And now that I think… Didn’t I not have CDs when I put the new drive in and had to use a flash drive to bootstrap the install?

I did. Dammit. Wow, I almost hope I do see more crashes (do I really?) so I don’t feel like a dumbass.

Posted in Photos, Hobbies and Worthwhile Stuff | 2 Comments

All Right, Let’s Give This an Updating Sort of Go

I still don’t trust my browser. But I trust it more now. Cough.

Okay, because I know I left everyone out of the loop, really, and because I know that sometimes it’s better if I say it and then it’s read by people directly, because it is all confusing and just gets even more disjointed as it passes through people’s minds (like Telephone, remember that game? It’s the game that proves either all your friends were deaf in elementary school, or else they were screwing with you… It’s a toss up) I know it’s time to at least somewhat catch everyone up.

So near the middle of July I’m getting another transthoracic echocardiogram with a bubble study. Yay! I’ve had one… I’ve had a few. I had one three years or so ago, and then a transesophoegeal one several years prior to that. Mad points if you can remember why and the history behind that… What, you can’t? Right. It’s also why the pulmonologist at DFCI was like… “Oh, jeez. That might explain some of it.”

Well, here’s the thing. It might, now. It might not. It might be overall related in the big picture if you consider the big picture is that something went pear shaped somewhere with me, but maybe not all directly, or clearly. Obviously, however, I feel shitty in no small part because of what I am feeling in the chest/airway/blah blah area and it is having an effect, and truthfully, isn’t something you ignore.

Everyone ignores this stuff. No, I mean…. because it isn’t chest pain. I mean, it hurts, now, after years of just feeling like I had the wind knocked out of me. It hurts sometimes, mostly in my throat. It is the sort of thing that in the beginning would happen, pass, and it didn’t kill me… and good lord, you don’t mention chest or breathing issues to anyone if you’re a woman. Sorry. Why? Because it’s anxiety. I mean, fine, guys hear it is stress related (do you have any stress in your life? What the hell kind of question is that?) but generally something gets done that isn’t like Xanax, you know?

Oh my god. My browser just crashed. You lousy piece of… Stress! I wish I were kidding there.

So anyway, it isn’t really pain, or constant. It is uncomfortable and inconvenient, but less inconvenient to suck up and live with until it becomes… normal.

As you may recall, I have had migraines (I have had fewer in the past year or two, actually). I have had “Oh my god, do you need to sit down and have a cookie?” low blood pressure. I don’t have low blood pressure any more. That’s for damn sure. But the migraine stuff lead to the transes– they shoved a transducer for an echocardiogram down my gullet and did a study.

I was told it was normal. It was, and it wasn’t. Three years ago I found out it revealed a really small patent foramen ovale — which the transeso– studies are good at picking up. So, this PFO thing is really very common. I guess damn near a quarter of the population is thought to have one. They don’t do much. You don’t need antibiotics (I finally learned) prior to dental work with them, they just sorta sit there. Most of the time. Basically your foramen ovale is a little hole in your heart that is supposed to squish shut a few weeks or months after you spew from your mom’s loins (hi mom!) and in a lot of people, it doesn’t happen. It stays open (patent).

Again, not generally a big deal. Babies who have this might also have other, far more freaky, scary, imminently worrisome heart issues. I didn’t. I guess people with migraines supposedly have a higher incidence of it, but I don’t know if that’s just because migraines suck ass horribly and no one can do much for them, and the doctors feel like maybe if they look they can explain it or make some sense out of it if they can’t fix it. That’s a valid feeling, not sure if the data is as valid, really.

I survived childhood. But for the fact my heart goes really very fast, and I lose oxygen saturation and have a penguin sitting on my chest most of the time lately and activity really wants to piss breathing off (which being inactive isn’t going to help either… damn you Catch 22!), my heart and lungs are allegedly pretty healthy. My blood pressure, which used to be oh my god low, really isn’t anymore. I mean, it really isn’t.

Blood pressure is something that can affect how a PFO behaves, but not so much as you’d think, I gather… More it seems that aging and the fact that sometimes, some people genetically have a PFO that becomes an asshat later in life (dudes, not to annoy you, but my browser crashed again. I am bull.) Sometimes this tendency is linked to other genetic asshattery. Sometimes asshats happen. Generally, the asshattery hits around the age of 40, and sometimes it is only caught after a few emboli have been thrown around (I think that is the best term… I have seen this in publications here and there, “throwing emboli.” Like my blood decides to pop a cap in my lung or something, it sounds all gangsta.)

Annoy you again… my browser crashed, third time. This is why I haven’t been so hot on updating. I can edit photos fine. Dammmmmmmmit.

The only time we tend to worry about the PFOs are if there are a few strokes or whatever prior to age 50 (yeah, I know. I mean, that’s a big deal.) or if someone is turning blue, mottley and having difficulting breathing either on or off exertion or for no reason at all… Because throwing emboli can start out very small, in very small veins, and not be overly dramatic. It looks like Raynaud’s (right) except whenever you move… Um. So the thinking comes back around to maybe the PFO is being a noodge and causing some of that stuff — and my browser went again. Right. Maybe this is Mozilla’s goddamn fault.

This was suspected once. Then discarded. It isn’t often a PFO, as common as they evidently are, do this sort of stuff. When they are naughty, however, they do.  And given the high blood pressure (Shoe, were you aware that your blood pressure is high enough to blow my head off from clear across the room? –Yes, doctor, yes I was.) and the cyanosis and the shortness of breath and the fact that climbing a single flight of stairs is a measurement of how okay you are to function… and I failed to a certain extent… This needs to be checked first.

If it is unrevealing (it could be, and I’m not sure what exactly would make them say, Aha! beyond bubbles where they ought not to be) I get more testing, which might just end up being the same in the end. This is stuff they should be able to deal with, either by stopping up the hole with bubblegum or anticoagulants or whatever.

Okay, and crashing again. I am finishing this up, because my life is too busy for this crash report bullshit and I don’t even have anything I have to do. Except ditch 64 bit Kubuntu now.

The pulmonologist also suspects (due to my history and feeling my neck up and stuff) that there is some issue with my throat. Is it metabolic, or neuromuscular or swelling related? Dunno. Neither does he. They could all fit, and wouldn’t necessarily clash with the histiocytosis/overgrowing stupid cell stuff we’ve seen. But the echo comes first, because if we can keep some of the potentially nastier stuff at bay we might be able to make life more pleasant and get a clearer grasp on what is or isn’t related to what. Give a gimpy person enough time and all sorts of unrelated stuff will hit the fan.

I need to remember to tell the pulmonologist about the drooling. They ask about swallowing issues, and I never remember that actually is a swallowing issue. I know, ew, right? It’s also like a “get a mop and a wet floor slipping danger” sign issue, but hey.

Until then, keep activity light… which sucks ass when it is coming from the mouth of the guy who said “You can’t do a flight of steps without this happening? Urg.”

I totally bet I can throw this laptop across the room without any trouble. I totally want to.

 

 

 

Posted in Getting to the Point, Langerhans Cell Histiocytosis, Living with, The Bad, The Ugly, Uncategorized | Leave a comment

An Experiment

That you’ll never see if 64bit Kubuntu decides to be the bitch that 64bit Ubuntu was being with Firefox… So far so good, but y’know. Who am I kidding? Firefox on Ubuntu/Unity would have crashed by now. Of course, it’s been a while and we’ve got a new Firefox version.

I probably will actually post elsewise later, but truthfully, I have to overhaul a few things here and there and make sure that this works, because I’d rather not find out that my autosaves weren’t so frequent and that my little Firefox/Ubuntu problem is more 64bit related than anything else. That would blow, as I do sort of need all my RAM power for photo processing. That, and you know, it’s there and all that.

Posted in Photos, Hobbies and Worthwhile Stuff | Leave a comment

A Brief Note to the People at Dana Farber

For a couple reasons (mostly technical) I am keeping this short, but I want to say I will be eternally grateful for the peeps I’ve encountered at DFCI this past year.

Doctors hear hoofbeats, it is said, and are told to think horses, not zebras. Up until this point, many doctors I saw recognized there wasn’t a horse in sight, and promptly told me unicorns aren’t real.

Dana Farber’s doctors might not be able to prove unicorns exist, but they remain willing to explore the possibilities of such things even if it turns out I have a horse/narwhal/goat hybrid on my hands…

It means a hell of a lot. Just sayin’.

Posted in Getting to the Point, Langerhans Cell Histiocytosis | Leave a comment

Oh FFS.

In the off chance you don’t know, the middle F in the title there is that particular f word. I might use those today, in print, here. I thought I’d forewarn if you’re the type who that bothers. If you are, you probably don’t really know me or talk to me much. Mwahaha.

So, yeah. First, we had tornadoes! Um, well, we had rotations over our town, but being so close to the coast and at the tail end, nothing touched down, which is good. We got some bad ass lightning though. And I am stunned we didn’t have more than a few flickers in power, much earlier in the evening.

Also, Mr. Shoe and I are celebrating (whooooppieee! Our house is so much goddamned fun thanks to me lately!) our fifteenth anniversary on Tuesday. That man is a saint, except he’s not dead, and I’m glad. He did, however, throw a bag of Penny poop at me yesterday. He didn’t seem to get that I can’t stand in the door way, keep the door open, and remain steady and catch the incoming bag. Heh. We needed the poo flinging laugh yesterday.

So yesterday I also had my pulmonary function tests. Um, all right. I am not unhappy, and I am not happy, and that is exactly why I hate this shit. The good news is (and I figured this would be the case…) I have the most motherfucking awesome lungs known to man ever in all of history. No, for real. My spirometry was awesome. My lung volume, as documented on many of my imaging studies, is low, and I apparently can’t get all my air out, but it’s still well within the normal limits… Because no one is a well oiled machine.

All righty, then. So, six minute walk to test oxygen saturation. Let’s say this: I started with my normal resting heart rate, which is too damn high. No one knows why. I was told by a very angry anesthesiologist that I should know what caused the little hole in my heart because that can cause desaturation once back in November. I told him that the people who spotted it said they didn’t know why it was there, but it didn’t seem to cause my problems so all I needed to know was that I needed to let him know. He can fucking figure it out… Anyway, no one knows why my heart does this. It just does. The lowest resting rate I’ve spotted in the past year is 93 beats per minute. It was 105 yesterday. My oxygen saturation at start, fine.

I walk with the Brawny towel model looking respiratory tech (the plaid shirt didn’t help, and he was a cutie) for six minutes. He has me walk with my hand over my heart, like I had a Napoleon complex. I think this is key. Not the Napoleon complex, the hand elevation. My saturation was steady, my shortness of breath pretty unchanged (got a little worse) and my rate of respiration — while still too fast, wasn’t terribly different than I am normally, and my heart rate was up to 120 or so. Okay, not that big a deal.

Then came the four flights of stairs. See, I’m an idiot. No, I am. He’s telling me I can stop at any point, and I won’t. Let’s put it this way: I should have. Let’s also have it be known, my oxygen saturation was fine. But halfway up the second flight, my foot turned to lead and I said, “Yeah, you know, this is getting harder.” And away went my heart. Well, not away. (Code Red on the fire escape! Stupid woman can’t admit she’s had enough.)

He said, “You can rest if you  need to.”

I said, “Fuck that talk.” No, I didn’t. I thought it, somewhere deep inside, and this is why I am a problem. I said, “No, I’m okay!”

And the third flight, and the fourth flight… halfway through the fourth flight I was wondering if maybe he was just going to keep me going up until we ran out of building or until I keeled over. We stopped at the fourth flight. My oxygen saturation never dropped below 96%. My heart rate was 153 beats per minute when we stopped. Okay, at least for the exertion, my heart is responding in a somewhat relational manner? It is too damned high, but… relational? I don’t know.

He also was concerned because there was no question I had to stop and hang on to the railings (I should have sat down) on the way down because I couldn’t talk. And then I turned purple. Well, my knuckles and things. My skin was a nice frozen bratwurst veiny meat color. This is livedo reticularis. I was told by a jackass once that this happens (oh, Dr. Jackass, sorry) if you drink caffeine. Or if you have weird heart, circulation or odd immune disorders. Naturally, with my history, we blame the one frigging Diet Coke I had that week. I have had the immune disorders ruled out for this, actually.

Ooo, it’s happening now. It’s gross. Anyway, Brawny Tech says that while my lungs seem awesome, my discomfort, difficulty breathing and obvious, um… outward signs of this seem to tie to heart rate increases. Since I’m racing constantly… Go figure. I mean, I know this isn’t unusual, per se. It’s hard to tell heart and lung and kidney problem side effects from each other. Nothing is ever, ever easy. He asked when I last had an EKG. Pfft. I don’t know.

So I am off to a pulmonologist anyway. Dr. J figured it could possibly clearly put to bed direct lung damage/issues and might be a logical window to what else effects things that way (I know there are many… heart, vascular, kidney, muscle, neurological… and yeah, they can be caused by blood disorders and tumors and stupid disorders that won’t clarify themselves.) I was hoping that there’d be something that arose that could at least be a band aid on my bad self till we can figure out a better band aid. Not this time.

Now my chest hurts. My lungs are okay though. Oh for fuck’s sake.

 

 

Posted in Getting to the Point, Langerhans Cell Histiocytosis, Living with, The Bad, The Good, Uncategorized | 2 Comments

Round the Bend!

Except that the only way to find out for sure sure is a blood test, I’m pretty sure my sodium or something is being weird. I have a few reasons to think this is the case. I wish they made home tests like they can do for blood sugar, but of course, it doesn’t quite work that way. (I guess there are a few, but generally speaking, I’ve heard doctors and people with weird electrolyte thingies going on say that the best way to tell is weighing in and a home blood pressure cuff. Even if the cuff isn’t as accurate as a human reading one calibrated in a doctor’s office, it is close enough that you’ll pick up any real drift. I’ve found, personally, the scale lets me know quite well.)

Anyway, the scale has cued me in on the idea that there is something being skunky, and my clothing confirms it.

I have to buy new shoes. Shoes, people. I have long suspected many people (and not just women, c’mon) like buying footwear because by and large, your footwear doesn’t insult you when you gain or lose even substantial amounts of weight. I mean, I did have to lose the wide shoes when I lost weight, and often people need to switch to a larger size or wider shoe as they age depending on whether they’ve had weird postural things go off over time (I guess high heels tend to make one’s shoe size change a bit if they’ve been worn for years and the person suddenly goes to flats or something. I couldn’t ever verify this though. Put a three quarter inch heel on my shoe and I’m falling down. That’s not high.)

Anyway, you see those shows on TV with the makeover people and every person being re-made is all about the shoes. They won’t tell you you’re fat. They don’t care if you’ve eaten at P.F. Changs all week. They don’t care if you’re getting your period.

I have to buy new shoes. I have to buy fat shoes. And what blows? I really don’t have to buy new pants. I mean, I have to replace the ones that have calf openings that cut off circulation. See, I’ve put on thirty pounds or so (almost) since… March? And, um… My shoes and socks don’t fit.  This makes me suspect there’s a problem… beyond the fact that I hate buying clothes of any sort and I don’t understand why anyone needs more than three pairs of shoes at any time, possibly two or four, depending on where you live. I totally don’t get the fat shoe thing. I do know I can’t wear my sandals all summer though, and given my sock issues, I don’t want to wear my old running shoes. They are a bit manky.

It’s little crap like that that makes this just completely, aggravatingly, totally laughable. Also, where they took the tumor from my ass cheek does actually feel a bit tight in clothing. As I said, I’ve gained nearly thirty pounds, and I am willing to concede that some of it is not water weight or… whatever the hell is going on. But the difference is I can feel it there, and I can close the waist on my pants quite easily. When your calves are muffin topping out of your capri legs, there’s something wrong.

I think this tends to feel a lot like altitude sickness. Of course, then doctors ask if you’ve ever had altitude sickness, and ask how the hell you could know that if you haven’t. I watch the Travel Channel, asshat. But I think I’m going to say that I spent a summer in college living in a yhurt with a family of yak farmers. The summer before that I was flying a crop duster dropping DDT on jungles in South America. Because I am expert in yak husbandry, have a pilot’s license, and couldn’t possibly have a clue whether how I feel now is much different than how I’ve felt in the past. (I will admit freely I have no damn clue if I could ever be called quite normal. But deviant normalcy can still deviate to something else entirely.)

Anyway, I can only last doing stuff for about fifteen minutes. As you can see, I grab that when I can.

Ruthy Toothy
A Long Way Down
Spider and Lunch
Blue Jay doing bird stuff

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

Oh, Hai.

It’d be cool if I had something to update this with… Well, actually, I have tons of stuff I think I should write about but then there’s that whole getting around to it. For someone with a boatload of time, I never have any.

So anyway, when we last spoke I filled you all in on the vestibular PT lady saying she thought (urged, threatened) that pulmonary PT might best be the first issue tackled. Because the information she gathered during that last PT visit warranted a report, she contacted Dr. J. I mean, she emailed him via the hospital network — never really a great way to contact people, but he actually is pretty good at getting around to responding. The problem is a bit more complex than that, though. See, it’s most likely histiocytosis or the process that relates to it that is causing this shit, but we don’t know that. So is this his jurisdiction? (Since I did have thoracic surgery to remove a mass and I have lung nodules — which still might not be why the oxygen thing happens — he is a logical enough person to order the lung tests. I mean, there is a huge pulmonary component to any type of cancer or hematological disorder, and it is stuff they check on, so…)

At any rate, it comes down to Dr. J getting an email that asked about moving the PFT forward and about pulmonary physical therapy. You don’t ever ask doctors via voice mail or email more than one question, because only one question will get answered. His response (which took a bit — whether he was at a conference, busy, or didn’t recognize the name of the physical therapist, I don’t know) was that pulmonary therapy sounded like a fine idea.

It is just as well the PFTs were not moved up. I ended up getting a cold last week, which would totally skew results and would definitely make me a big jerkwad walking into Dana Farber that way.

I am not signed on for lung PT yet. I guess that my vestibular lady could write me a prescription based on her findings, but truthfully, the test is seriously two weeks away, and the pulmonary therapist said that it is hard to do much without some actual reasoning why at the moment. Low blood oxygen saturation is not really something that has a single cause and I highly doubt that my lungs are even half of the picture there. So I think I can wait. At this point, let’s just make an attempt to do this as close to right as possible if we’re going to, you know? I have lots of time, but not time for stabbing in the dark.

Anyhoo, that’s sucked and all I do is come here and gripe and seriously, c’mon. I don’t like that. No, for real! I don’t! I have felt pretty ick though, and then my face decided to do the good old blow up on one side/swell/droop thing. I have a picture, but I look pretty hellish in it (and oddly, not because of the swelling) so it’s more a reference thing. I mean, my sweet GP has seen it and asked if the doctor in the ER was friggin’ blind or something because he said he didn’t. It is pretty obvious, actually. If it didn’t happen quite so reliably at points (I’ve been drooling!) I’d probably worry less. I mean, things swell up and go down. They’re like… supposed to to a certain extent.

So anyway, still here. Wave.

Posted in Langerhans Cell Histiocytosis, Living with, Not Otherwise Specified | Leave a comment

Which PT is Which?

This is probably either going to be short or somewhat incomplete, and definitely littered with typos. Posting via my Droid phone, which is not a comfortable way to type, but is sometimes just easier to get at than my laptop. (I upgraded to a generic Ubuntu 11.04. My feelings towards Unity are ambivalent, but my vitriol towards Firefox crashing and weird administrative things segfaulting grow. Also, I want Synaptic back. Jeez oh man.)

I still felt nasty as per usual on Thursday, as I kind of figured I would… but I also know that it probably won’t change and I do think the vestibular PT is helping a little, and I will so take what I can get. So I went, at least feeling less barfy, but feeling short of breath, turning lovely lacy blue colors, and with a burning in my lungs. I had tried antihistamines/decongestants, just in case… gave up after a week. Antihistamines were probably just bad news, decongestants confirmed I am just not… well, if allergies play a role in anything here, now, it is a small one.

So in I go, and the nice PT-rapist (oh, a new name!) says I shouldn’t be uncomfortable waiting the four weeks for the pulmonary tests if I feel like this. I said maybe, but I don’t think there’s much they can do in a shorter time frame. I told her about the ease of getting winded, griped about how I can do so putting socks on and still be told I am out of shape (and she said people get winded making the bed because that can be exertion to some people… and I must’ve looked at her oddly and said, “That’s what I am saying…”) I mentioned previously low oxygen saturation readings.

She said that we should do our half hour with the oximeter on my finger and see. Okay. My blood pressure was pretty damn good for me (actually just good… lately it hasn’t been less than 130 over 95, and it was nearly perfect Thursday. So yay.) My heart rate (always too fast) was between 90 and 105, so while not awesome, it wasn’t like it can be. My oxygen was 98 to 100 sitting there. My hands and feet and everything were freezing and I felt cruddy, but okay.

So we start… I do a sobriety test heel to toe walk (better at this and can do it reasonably well with eyes open). Oxygen looks great. Did a half tandem stand with eyes open and closed. Doing better with that. Oxygen dips, but not much. Standing there, talking to PT-rapist, another standing exercise and she says, “Sit down. Oh my god. Sit. Your oxygen saturation just dropped.”

And what scared me was I didn’t feel any worse than before. As I sat, it came back up from 84 to 98 in less than a minute. It had fluctuated in the 90s (which is fine and expected) during the balance stuff and then dropped off.

So the line changed from the idea that I shouldn’t have to be uncomfortable to the PT-rapist needing to tell someone to push it forward. My sweet GP is obvious choice, but with a test scheduled at Dana Farber and the not so easy access between my GP and the hospitals in town records wise, she’d just end up talking secondhand to Dr. J anyway. But legally, I suspect, someone had to know. So my sweet PT-rapist emails Dr. J.

I imagine I have drops like that and don’t realize. I also know it won’t do it on cue so I don’t know if the testing will make it happen. But I am glad she saw it, and let the doctors know. Because I probably do have to inch it up (like this hasn’t happened off and on for the past three years) but if I had done it without someone trained seeing it, and the test didn’t provoke it (it might not), I would feel like a jackass.

Will it be moved up? I dunno. I kinda don’t care. I mean, it is going to do what it will do, and with any luck some how we’ll catch it enough to piece it together. Probably not this time around all by itself.

So it was low enough that if it happens frequently they worry about cell death and brain damage and all that fun stuff. I can tell you that it probably does… but it is easy to blame equipment malfunctions. I obviously break more medical equipment just by standing near it. (It seems that Dana Farber – and ONLY at Dana Farber – I am unable to register a body temperature at all on the thermometers. I suspect it has to do with the sanitary covering materials and my usually kinda dry mouth though… It only seems to happen there.)

At any rate, it isn’t constant (good, except when it comes to spotting it). I was told maybe, priority wise, vestibular PT should be lower on the list. Pulmonary PT might help, she said, but would rather it be dealt with at a more well equipped for pulmonary PT facility. And it might be that it all hold till they see what the hell is going on.

So instead of a sheet of balance exercises, I got a sheet that instructs me (no lie) on how to breathe. It says “inhale deeply through nose, exhale slower than inhale rate.” Yay me! It is good I turn lacy purple too, sometimes it is how I realize the air’s not coming in right.

The balance person that is drawn on my exercise sheets looks like a bulkier, older Velma from Scooby Doo. The breathing guy on my sheet — the sweet (funny) PT-rapist apologized for his appearance. He looked like a cross between Crazy Eddie the neurologist and Chairman Mao. How do you illustrate breathing anyway? I mean, hello?

I don’t know, but at least if I have to call to move things up… at least I don’t feel like a whiner. No one at the Farber has ever made me feel that way, but y’know.

All right, enough of this thumb typing. At ease.

Posted in Getting to the Point, Langerhans Cell Histiocytosis, Living with | Leave a comment

And It Was All Yellow!

Yellow Tulips

Mr. Shoe and I are convinced that All Yellow song is really pretty much about needing to pee really badly. I mean, come on.

Posted in Photos, Hobbies and Worthwhile Stuff | Leave a comment

I Love It When This Happens!

I love it when I fire up the laptop to post something here and when I finally get the post screen up in front of me, whatever it was I was burning to say is completely gone. Duuuh. I guess… since I last posted… things have kicked it up a notch again (I feared this one was coming, but every time the signs come and flicker off a little I think maybe I avoided the waxing period — I think this is best described as waxing and waning as opposed to relapsing and remitting. It never remits, it wanes down to something less everything all at once, and then builds again.)

Of course, that leaves me with the eternal question, what do I do? What, do you think I friggin’ know by now? I mean, is it worse? Yes. Is it much worse? I don’t know, define much. Shouldn’t I tell the doctors? My inclination is always no, because truthfully, I don’t know if it is worse enough and there wasn’t a whole lot that we could take action on previously. And who the hell do I even go to? My GP would probably lean towards sending me to the Dana Farber/Brigham and Womens crew just because even if I needed to see a different specialist there’s more pertinent information and a better connection/chance of communication happening between the right people there. I don’t want to bypass her completely because it would look weird to them… then, I don’t know that it doesn’t in the first place that she asks if I have talked to them before seeing her. (I love her dearly and the problem is more that she’s not in the hospital network that they are… But a primary care in the network all of the specialists are in would be inconvenient as hell for me, would mean losing a great ally who has an MD and knows me and my history all too well, and probably would just result in the same confusion as to where to go when it all comes down.)

My inclination is to sit tight and hope I can make it till June when I have the pulmonary tests and stuff. I can’t see this moving any faster really, so I probably can. I’ll just be feeling yucky. And of course, the idea is that I’d probably still feel yucky if we pushed it up anyway.  It’s not that I don’t think there’s nothing that can be done, it’s just that I’m not sure there is enough they can work with to make any real positive changes now. It’s completely counterintuitive and shitty that I have to wait for this to get worse before it can be treated effectively enough that I feel better than I do currently (or can even keep this baseline) but if you stop and think, a lot of things that are pretty damn scary work that way in medicine and sometimes all parties are completely unaware of this going in.

I know the awareness is a benefit. It also sucks to be aware because it’s truthfully a lot less energy to be bullshit and up in arms that no one has a magic cure. Then again, maybe it’s more energy in the long run… being bullshit in these situations is about as helpful as a pity party. It might make you feel better in the short term, but in the end you’re still tired out and you haven’t gotten anywhere. I guess being bullshit about stuff does have the fact that sometimes there are things that can be done if you push and are bullshit if there’s something holding you back. This isn’t the case, here, now, though.

It doesn’t change the fact that I still can’t determine what is worthy of a call. It doesn’t pay to make a pain in the ass of yourself, and going in to see anyone usually results in a flurry of concern and urgency that either ends up justified — with the question of why you didn’t show up sooner, dammit — or a fizzle that leaves you feeling like you’ve troubled a lot of busy people without a positive effect, even though they urge you to contact them. I’ve had things that have been no problem at all (think ass cheek and routine chest CT follow ups!) turn out to be real problems, and other things (joint swelling) that are a genuine nuisance be really just little warning signs.

By the way, the warning signs… Joint pain and swelling tend to be not so reliable. It comes, it goes, it isn’t a huge issue except that it takes me be surprise when it decides to be a nuisance (at least the joints are the same each time). The other warning sign — and this one is so stupid and so reliable that the ass kicking is to resume — is drooling. Yeah, sorry.

If you know me, I have a history of drooling. In fact, it was a joke in college that if I drooled on you it meant you were mine now. I always drool on the ones I love. But there’s drooling and there’s drooling. There’s baby drool and there’s Saint Bernard drool.  I’m like a baby trapped in a Saint Bernard’s body. Or something.

The warning droolfests occur without warning. I am not speaking, or eating, or anything. I might just look downward slightly, and it’s just… I mean, sorry, gross as anything, embarrassing as hell, and yet somehow every time it happens I feel this sinking, “Aw, shit” feeling and then I just want to laugh.  It’s been happening for about the last two years, but it was only a good eight months ago I made the “more reliable than joint” predictor connection. (My joints don’t hurt persistently enough to make me think it isn’t just random chance half the time now… if I see redness and swelling, then we have a problem, I know.) It’s not a little bit of drool, either. If I hit myself, trust me, I am changing my shirt. If I hit Penny, or the floor, there’s actually a splashing noise and paper towels of an extremely absorbent variety are required. If I hit the plate of cookies, they are all mine.

That really picked up over the past week again, and it’s been a rough go with turning blue and shortness of breath and then subsequently feeling very cold. That means getting worn out more quickly. I recover pretty quickly if I can plant myself down and force the air in and out (and not drool on myself). We’ll see how it goes, though.

No, seriously. My cookies. Mine. You don’t want them. Trust me.

Posted in Getting to the Point, Langerhans Cell Histiocytosis, Living with, The Bad, The Ugly | Leave a comment