I knew the past two weeks were going to be less than fun, but you know how it is: brace for the worst, hope for the best, and then something that you wouldn’t have ever imagined in a million gazillion years happens.

Last week I got my repeat chest CT to follow up on that little nodule that they spotted last year. Monday, Mr. Shoe saw our lovely GP who said “By the way, tell your adorably wonderful wife that the report came back and the nodule is unchanged.” Tuesday, I saw the rheumatologist who I realized I wasn’t giving a fair shake. My records got sent to the wrong office, so I come in to the visit and he sees — me. For what that’s worth. And then he makes the (very logical, and very correct, but so not the heart of it) pronouncement that I have a sleep disorder that must be taken care of. I said, “No duh.” I did. Because I knew he wanted me to say “No shit, Sherlock!”

Needless to say, that’s one of those things that makes me defensive now. And I am used to being just dumped when it’s not all apparent immediately. I wish (as does my sleep doctor, who is very good and who I see every two to three months, dammit) that instead of fighting with me about how badly things are managed in that department, they’d call my sleep doc and tell him how to do his job, because obviously specializing in neurology and then sleep medicine didn’t learn him nothin’.

Wednesday morning, I call my GP to let her know that I think I need to give the rheumatologist the chance, in good faith, to prove he’s not like the jerks I have seen here and again. Oh, and please resend my records. My GP wasn’t in yet. But when she called at noon, I figured she’d gotten the message.

She said, “You know, I got the full report from your lung CT.  Your nodule is the same, but… there’s something else.”

There’s this gland in your chest, I guess (anatomy lesson time) that is huge and active as a fetus and throughout childhood and adolescence, and then it shrivels up and stops working when you are an adult. Some people have it basically disappear, some people have just a really little one. Some people, people with things like myasthenia gravis or neuromyotonia or blood and autoimmune disorders have something happen where it stays enlarged — or it develops tumors.  It’s called a thymus gland, and it kind of shows your immune system how to get going and work when you are young, and then, when you’re old and decrepit, it quits and lets your now oh so knowledgeable grown up parts manage your immune system.

My thymus has a growth. Because of its jackassedness, and (while not all of these things are cancerous) they are classified as malignancies, I named him Don Thymus.

What does this mean? Well… We don’t know really. The surgeon thinks we will. Don Thymus will need to come out (he’s about an inch and a half around). The surgeon says it doesn’t look cancerous, and given my history, is likely going to yield some kind of clue as to how to treat this thing as we go along. He says at this point, he doesn’t think removing it will help my current state greatly (although, sometimes it does help keep things away longer and requires less management on other fronts), but he is pretty confident that we will learn something worth knowing from pathology testing on Mr. Thymus.

In other words, it’s really bizarre to have one of these things pop up… they’re only present in a small percentage of people with autoimmune stuff. But if it isn’t cancer, and I am having the problems I’m having, it’s almost certainly a damn big piece of working it out and getting under control.  The chances of it happening, my feeling like I do, and it not being related are pretty slim.

Not sure when they’re yanking it. It’s an overnight thing, and the surgeon’s sure he can get it on the first swing (and he says two minimally invasive surgeries beat the crap out of one splitting open of the sternum… and I think he’s on to something there. I like my sternum intact, please). The pathology testing will take some time, and because it is considered malignant just by being there (but it’s a benign malignancy, sure, makes loads of sense) it’ll be staged, as well (with a top hat and tails). After that, some rheumatologist (will it be this last guy? I don’t know) will take over management.

Betcha didn’t know you had a thymus. The actual growth is loosely termed a thymoma… which makes me think of Shakespearean “Yo mama” jokes. “Thymoma’s eyes are nothing like the sun…”

I sorta don’t have one. Hey now!

The immunologist I wanted to see is no longer seeing patients, so I was plopped in with someone I saw previously — once. He’s… Well, truthfully, for a much older guy I was surprised (back then) how empathetic he was. And there was a lot less to go on then.  I am pretty ambivalent, honestly — but really outside the community hospital it comes down to picking a name out of a book, and that makes known ambivalence a preferred course, I guess. Because it’s clear the community network of specialists isn’t really the way to go.  It’s also a lot longer wait to get in in the community.

I haven’t heard on any labs (including the X-ray of the fabled kneelings)… which could mean they’ve all come back negative, which wouldn’t be a surprise at this point, or they’re not back yet, which would probably be a better scenario for figuring things out.

I have been trying to write, with some success. Mostly, though, it’d be cool if this’d just like…. get itself behind me.

I made the right call. Truthfully, every last doctor in this area goes through the practice I just left and says that it’s a bureaucratic nightmare. That was my problem. My doctors have the hard part. The paperwork (or faxing and email thereof) should not be the hard part.

I love my old new GP. I still do. I said to her that experience — loads or not — is meaningless in my case because… I’m what I am. And at the very least, she knows me.

There is something wrong. It’s obviously systemic, it is (or was) autoimmune in some stage, and it’s not going to go away.  I am getting my follow up chest CT (just to check on the lungling), a knee x-ray (to check on the kneelings that are growing) and a mammogram, because glow in the dark boobs are awesome.

I had lovely blood draw last night, and I get to wait to hear that probably everything’s disturbingly normal, even though my face was bright red, my hands, feet and legs were blue, and I had various swelling bits.

But this is starting to be such the same animal every last time… The context is really important, and a GP who knows and has seen the thing go down…. And is ready to put this behind her too (in a positive way) is a good thing.

Let’s just hope momentum swings in my favor.

Or even for a logical given the signs lab report — but I kind of stopped counting on those ages ago.

I just went to see my sleep doctor. This is the time of year when what ever this is flares up, and my sleep doctor has doctors in training come through.  I could tell halfway through this poor guy this time was just feeling useless… I think he at least had the sense to realize and be happy he had a fallback in my sleep doctor.

He suggested the… well… obvious. I don’t sleep well at night, and then I am tired, and it’s all circular. See, drug induced sleep and wakefulness aren’t natural, they aren’t like when it just happens. God help me, I know. I know. I don’t want it to be this way, I don’t think it has to be this way, and I think pulling back on that stuff right now will ultimately end up making it harder for me to make sense at appointments (or make it to them at all) and they’re only a small part of a much bigger issue. It’s just easy for everyone to take shots at that because that’s all that’s being done.

The regular sleep doctor did indeed back me up on this.

I have an appointment with my former GP tonight. As in, the one I had this time last year. I like her. I feel for her. I really do.  I just hope we can figure something out, finally.

…heh.

So, well, first the extraneous stuff. My dad was kicking serious ass after his quadruple bypass, but because my dad is… well, part of my family, his blood pressure wouldn’t come down. Except when he was exercising (yes, we’re all busted. Fine.) So the doctor prescribed a teeny dose of an additional, very benign and gentle blood pressure medication — I think he must have had cause for concern, cause he seemed to put the fear of god about it in my mom.

My dad had a seizure a couple days before New Year’s Eve.  He didn’t have any cranial bleeding, and hasn’t had another since that time. That’s a good thing. That medication was stopped. Ahem. But you don’t know till you try. And he’s still kicking my mom’s ass on the Wii.

I am having an easier time with vertigo… but only because my head seems to have stuffed up. Actually, it’s so disturbingly back in the same way it was this time last year I want to scream. I am very glad I had the beta blocker upped, though, because at least it keeps the freakin’ tachycardia at bay. Well, mostly.

But because my hands are killing me (and my knees are deformed… it’s actually really gross)… This’ll be short. I am hopeful (how bad does this sound) that blood tests next week’ll make the right people look at things properly. I don’t think I can afford another year of waiting… I had a follow up with the freakin’ awesome endocrinologist, who took my blood pressure and looked at my mouth and said, “Get your blood drawn, but nothing says that you’re out of whack, and I’m going to increase the desmopressin to three times a day.”

Serum sodium was a little low. Obvious thing would be I am drinking too much water… but I could tell when the endocrinologist called he wasn’t convinced that was it (it was low enough to be remarkable, but it also should have shown in my vitals at that low a level).  He said to please go ahead and take the extra dose of desmopressin, but be careful as I wouldn’t want to throw it off more accidently.

I just have to pull through till next Thursday. And hope against all odds that finally blood tests’ll be revealing, because I’m seriously getting deformed (and zombie colored, which is only cool for party tricks)… Because even if my bones are jabbing out of my skin, an X-ray is needed to confirm that it’s not a damned illusion, it seems.

So this smily guy (or girl, I didn’t ask) was out on our pussy willow bush/tree this afternoon (yeah, it’s a really well established pussy willow. It’s a damned tree).  I was heading out to try to squeeze something out of Penny real quick because it’s cold as sin, and I happened to look out and think, “That pigeon looks completely bullshit.” Then I realized it wasn’t a pigeon.

I got Penny back in the house (otherwise, she’d lick the metal door and stick to it. I kid you not) and went diving for the camera, hoping that I had the batteries charged. It matters really not at all, given that batteries aren’t any good when it’s 15F outside. But I did manage to snap a couple of pictures of this lovely birdie.

I’ve seen bigger hawks and stuff flying around, and saw one about his size take a pigeon off the neighbor’s house last spring — and a couple of years ago the neighbor saw one take out a sparrow in our bamboo. But this guy was sitting (he was not frozen to the branch) for a goodly amount of time while a bunch of  (considerably larger) crows went crazy at him.

I’m wondering if the stuff dripping off the roof of the three season porch is blue jay droppings or blue jay remains at this point, though.  And is it bad that that idea makes me really want to fill the bird feeder? Who needs the Discovery Channel?

If you know me and you’ve got a pulse (and if you’re reading, I’m kinda hoping you do, otherwise, that’s creepy), you’ll know this year has been a large pile of steaming suck. With an olive on top, because I think olives taste like — well, olives, and that’s the problem.

But two good things happened this year, and I guess that’s something. But let’s start at the beginning of December last year. I was feeling decidedly crappier than my normal crappish state, I had been for several months, and I was trying hard not to acknowledge that. I was not the only one.

Mid-December we lost our little bastard of a pekingese, the nearly 14 year old Monster. As always, the little git was impeccable in terms of timing and “is he going to pull it off again or not” that he was known for.  I was surprised that Christmas was as oddly pleasant as it was last year. The now-elderly Norman (poor guy) was thrilled to see my parental’s Westie for once, and we brought out Wii up.

Of course, seeing how Norman perked up in the presence of another dog made us realize a new brother or sister for him would come sooner rather than later. And my parents loved the Wii.  My mom liked skiing with the balance board (my dad only tried boxing and then resorted to bowling and golf on the Wii — but I’ll get to that).

So shortly after Christmas all hell breaks loose for me. In February the doctors declared my dad had angina and scheduled him for an April stress test. In February we brought home the lovely little pug lady, Penny Glottis. Norman finally felt right with another dog to ignore — a dog who definitely doesn’t give him PTSD like Monster did.

In April, during the aforementioned stress test, my dad had a minor heart attack, and surprised cardiac surgeons at Maine Medical discovered he was in need of a quadruple bypass. As far as they could tell (due to a healthy heart, yet awful arteries) he’d only had one heart attack, which was surprising because like me, he’d been feeling crappy for several months before my mom spotted it and made him see the doctor. I’m betting boxing with Mr. Shoe on the Wii and yelling, “I’m gonna kick your ass!” probably hurt and he merely golfed and bowled to hide it (I’ll get back to this).

Fortunately, my dad never smoked, and wasn’t in horrible shape otherwise, and the doctors were sure he’d come through just fine. They were surprised at how much better he did than they’d expected.

So I’m flaring up again. I mean, I suck and it’s not my fault and it’s not necessary, but I gotta deal with it. But I felt really shitty — to the point that Mr. Shoe asked if I thought it was a good idea to go up to see my parents for Christmas. Uh, yeah. Because… I have to. Anyway, it was supposed to be icy when we were going to head back, which was a good enough excuse to duck early — but I looked and felt so shitty my mom actually agreed that it was a good idea to do so, no matter what the weather was. So believe me, I must have looked like a steaming pile with an olive.

But the light this year… Thanks to the hints my mom was completely unaware of dropping left and right and my dad’s hatred of the traditional game of Scrabble on Christmas afternoon, we got my parents a Wii (sans balance board, mostly due to cost, mom’s knee surgery, and dad’s reluctance to use it last year — but with a DDR pad and game).

I wish I’d know my parents would have this reaction. I’d have used our Flip video camera, and Nintendo would pay us millions. Cause — you know that home video (later turned into an ad for Nintendo?)…

Put about fifty, fifty two years on both kids, and imagine that the little girl is my dad (more gray, facial hair, glasses, there you go), and my mom is the little boy having the complete conniption — and that was about it. I mean, I’m sure that little boy didn’t have a hot flash or anything afterwards like my mom says she did. But it was pretty much just like that.

My dad spent Christmas boxing Mr. Shoe, and played DDR. Thanks, Maine Med.

Well, in my own little mind, anyway.

I feel a little bit badly about it, but I know shortly I’m going to have to leave the doctors I am with — not because of them, but because the hospital network they are tied to is so horrendously managed that I’d actually imagine hiring in an outside consultant would help. And anyone who has ever seen a “management consultant” (or workflow, or procedural, or whatever) at work would know how it’s far more likely they’ll screw up the way things are done. But I think this health network’s management had to think and long and extra hard about how they could make this the most excruciatingly slow and cumbersome experience for doctors, patients, and insurance companies working with them.

The kicker is, the doctors are decent. I wish they’d turn the damn “doctor filters” off sometimes and trust a little bit more that I might actually have been present through the entire course of this train wreck and might have some actual, factual insight into the chronology and behavior of things that are going wacky, but a larger number there seem more likely to hear at least some of it. (And maybe that’s still a problem, but…)

There’s no way, though, that I can take the management making their jobs harder and making me jump through extra hoops simply because otherwise the paperwork is confusing for the system.  I’m already very sure that I’ve been denied certain services because the hospital network decided my insurance wouldn’t cover it — and my insurance does. It’s just that they can’t be bothered to check and send the paperwork to my insurance.

The problem is, even if the management is better elsewhere, it doesn’t mean the care is — but either way, it’s busted.  All I know is right now I’ve got a lot more confidence in my ability to determine what’s a problem now and what isn’t, and what the past can tell me about what’s on the horizon than I do in the medical profession’s ability to do so.

It’s just brutal to start over. Again. I mean, it’s brutal to try to find ways to make things work and be meaningful with another step down in functionality on my part — and it’s crucial to do so. And it’s brutal to start over with new doctors who imagine that this is a case just like all the others (an aside: I know this is complicated and not a usual situation I have going on. I am not 100% sold on the idea that this is something unnamed, unrecognized, or unmanageable in some respect. I know that this is uncommon, maybe even rare, but I refuse to believe I’m that damned special. It’s easier to believe doctors are chalking what they don’t know up to a magical status. Sorry.)

It sucks to explain it to new doctors, who’ll hit you (again) with the same tests (again) with little result (again). And then they’ll say, “Do you have any stress or anxiety?” And I roll my eyes and they say, “Well, you know what it looks like, right?”

No, I’m a frickin’ idiot. Of course it looks crazy, mainly because there’s pages upon pages of my ESR, TSH and CPK that are all lovely and normal. Sure, there’s weird bits, but since they don’t actually form a diagnosis when you pull every third consonant and first vowel out of the names the abnormal tests, we can’t figure out what it is.

But then they’ll see something and panic. Usually something that I tell them isn’t worth panicking about. Let me share that they don’t necessarily appreciate it when they say “You aren’t having a heart attack and you haven’t had a pulmonary embolism” and I say, “No shit. I could have told you that and been out of here hours ago.”

Or the lovely statement: “Well, it doesn’t look like you’re going to die any time soon!” Um, wonderful. Am I going to get a shot at living before the Reaper comes in the far future?

Any snarky answer (and boy, it’s haaaaaaard to hold back on them) and they go in to the “how important it is to make the most of every day” speech.

I KNOW. That’s what I do. I’ve been doing that for years, and I realized that probably long before many of these dorks were practicing medicine. That’s why I keep putting up with this bullshit. That’s why I haven’t lost hope. I know that if they could see, they’d probably have a hard time reasoning that sometimes the most I can make out of the day is a walk on the treadmill, a shower, and loading the dishwasher (by the way, loading the dishwasher ought to be a measure of disability — it is one thing that every last person with something chronic says is a living hell, but no one can really say why). Sometimes I can do more than that, often enough, it’s a struggle. But I do it, because I need to — and at the end of it all, however it shakes out, I can say that I always tried even if the medical profession tended to flake out on me periodically.

At this point, it’s just crappy because where ever I head next, it’ll be more of the same. I just hope in lesser amounts than I am expecting.

Because the world wasn’t completely spinning, Mr. Shoe and I struck out to the fine establishment known as Target (en français: Tarjay!) last night to pick up toys for the toy drive that the health department runs.  Here’s a tip for people shopping in the toy departments this time of year: It’s good to be obnoxious enough that people keep themselves and their overtired, overstimulated wives children away from you, but not so obnoxious that security tosses you. We did manage to achieve both these objectives.

Since re-viewing Eddie Murphy’s “Raw” video, the mere sight of a Monopoly board, Twister mat, or Slinky will set Mr. Shoe and I off.  Murphy ends his routine with his dad waxing poetic about the time when his dad only made thirteen and a half cents a week, and all they had to eat and wear was supplied by dad’s workplace. Dad worked in a toy factory. So Eddie Murphy’s dad had to eat toys, and go to school wrapped in a Twister mat.

As soon as we walk in to the store, there’s a damned Monopoly board. It was over.

We did find a really cool solar powered, eco-friendly packaged remote control car. We thought that was good and nerdy and appropriate for the health department, and didn’t need batteries. We thought it ought to be a sort of “carbon credit” for getting less appropriate toys. We couldn’t get anything that could be misconstrued as a weapon.

Dudes, these are children under the age of twelve… boxes are often very entertaining, and any damn thing can become a weapon in the right situation. A kid is just as likely to haul off and whack you with a Betsy Wetsy as dress a Nerf tommy gun in swaddling clothes and offer it a bottle. That’s probably the one saving grace of kids. Reality doesn’t need to apply to inanimate objects. Hooray!

However, I take a bit of exception to the GI Joe Stealth Suit that look a little too disturbingly like a Klan robe. Jus’ sayin.

We thought it might be a little more subtle to get the large scale racing car that was branded with Valvoline and Nicorette with our solar eco-friendly remote control smart car carbon credit, but it was more than the freakin’ cool nerdy car so we passed on it.

Mr. Shoe took them to work today so they could be checked for lead content. I think they make the people who are ready for retirement or who have the lowest seniority lick them… No. I’m bad. But he is going to be sure to warn them that the Target bag that he’s dropping them off in is not a toy.

Can’t be too careful, after all.

Right, so I didn’t fall off the face of the earth, but when you don’t see me online for months, it’s probably a pretty close bet that I’m hanging desperately on to the edge.

Let’s put it this way: Evidently any close up work or screens that I concentrate on real hard end up causing seasickness that the meclizine can’t take care of too well. If walking around with sea legs were where it ended, that’d be fine. But usually it ends up with a trip to visit the porcelain goddess. Let me tell you this: Every last time that happens, I have a pug glued to my leg for the next 36 hours. Penny is petrified of the thought of her mom imploding. It’s in evidence every time I sneeze.

So what’s the verdict? Well, jeez, what’s always the verdict? Not much we can do. Reacclimatize yourself, but it probably won’t be great and just remember to stop before you get ill.

I think the most troublesome thing is when I look back, I am seeing that the core bits of my problem have been here for years. Decades. And periodically, things get worse… usually after I’m run down, or get a cold or virus or some creeping crud. Then it blows up, and blows out, and leaves me with a souvenir. It’s taken decades, but now I’ve got really crappy lasting ones.

Saw a neurologist (again)… And I will give him this: For a neurologist, he wasn’t a complete sociopath. Actually, he was very personable. Not as personable as my sleep neurologist, but hey. But he said something that is indeed troubling me. First, that a lot of what has shown on tests could be explained by inflammation — like, nerves firing without reason in my chest is generally the result of a virus that inflames stuff. And if I don’t have a pituitary tumor (and since my medications don’t include things that cause it), diabetes insipidus is generally the result of brain swelling.

And by the way, he doesn’t think my problem is neurological. Cough. Now, fine, it didn’t kill me or anything, just basically pulled a Tonya Harding on my Nancy Kerrigan of a brain — but let’s say (as my physicians have agreed) that this is something that keeps flaring and remitting — shouldn’t, um, recurrent brain and spinal column inflammation be a slight cause for concern?

I’m not okay with the fact that chances are good I’m not getting back much that I’ve lost thus far, but I have to accept and deal with it. Fine. Will do. And I might be able to reclaim some of it. But dammit all,  I really would like to cut down the chances of losing more. And no one seems even willing to think in that direction. The kicker is I know when it comes back (it will, alas. No one wishes it were different more than I do, but I can’t delude myself… it’s disappointing enough when it comes back all on its own), I’m going to have another round of distracted doctors looking at different bits of the damned elephant.

In the meantime, I press on. Because that’s what comes down to me, and if I throw it in and don’t do anything to make it worthwhile, I’m only screwing myself over. I’d love to just say the hell with it, and not go to doctor’s visits and just use that time to do something I’d at least want to do (since I seem to be spinning my wheels again anyway with them) but that means I’m okay with the fact that a good deal of this is simple reluctance, overwhelmedness, and fear of failure and defeatism on the medical profession’s part. I don’t feel defeated, or hopeless, and I’m totally okay with defining “failure” as simply a lack of trying. I don’t have time for defeat. It’s not a luxury I have anyway.

Now, to visit my friend John.