Look! A Tumbleweed!

First off, I know you will all be pleased to know I fixed the kernel panic problem I was having on my laptop. Well, no, I didn’t. Someone submitted a patch that fixed it, and since I could boot to an older kernel, the last kernel update fixed the problem. So I guess you can’t be overly impressed.

But I think the moral of the story is… If you don’t have the coding ability, sometimes you just have to sit your ass down and wait for the fix and try to live your life in the meantime. Kind of like… well, my health at the moment.

I kind of figured that it would take a long time for the long suffering, spread thinly Dr. J to find someone to refer me to as we wait for things to bloom. At least, when he said that they’d be calling me in a week, I doubted it. See, you show my file to most doctors, they run screaming from the room as if their hair was on fire. I don’t blame them. I would. But I’m done with having them do that in my presence because I’m friggin’ tired and it’s work to go in and see them. So he’s kind of doing that for me, which I appreciate. But at this rate, things are going to bloom before we find someone.

I’m not saying that because it’s taking that long, I’m saying it because I feel massively icky.

So last weekend I had a one year post thymus removal CT. Of course, some joker keeps putting “lung nodules” as the reason for the CT… and it isn’t. So I get all sorts of weird questions and comments. I was asked if they suspected the suspected malignancy was in my chest. And I thought… I just told you no one knows where the hell it is. (It’s sort of like when I am asked if I have cancer… being asked by a medical worker, I can say I am being seen at the Farber regularly and that’s usually enough. On a form? It doesn’t work and I don’t know what to say, because the people who study histiocytosis don’t know what to say.) I realized later the tech didn’t mean chest, he meant lungs… and no, I’m pretty sure no one thinks it’s in my lungs. Truthfully, yeah. I don’t think so. They don’t think so. In fact, I think that a few doctors think that the nodule is more significant than I do.

I think that nodule was ironically my lucky break. But I won’t know until Thursday, when I see the surgeon. I like him. He is one of those older guys who, when he puts on glasses, looks like a turtle. He always reviews the film right in front of you, and that makes him put on glasses. And he’s showing us lung nodules and enlarged thymus glands and I’m looking at him thinking, “Ha ha! He looks like a turtle, and turtles are so damn awesome! I love turtles! Turtles make this noise like, ‘gnmack!'” And then I have no idea what he said.

So no idea there. I have a copy of the CT images to bring to Dana Farber, but I haven’t looked at them. I mean… I look at my brain MRIs all the time. I know I have no clue what I am seeing, but the last couple I could see were different from earlier studies. I would just be in the dark, thinking of turtles, if I looked at this.

I also had the vestibular and auditory testing done yesterday (as well as a blood lab that had been ordered by Dr. J my last appointment. That was a bunch of fail. I guess orders are good for one day only now, and… well, I think the receptionist on his floor must have thought I was going to grab her, then Mr. Shoe, by the neck — with my teeth — and shake them to death… Like Penny does with her stuffed penguin squeaky. I was just so damned tired, and while it generally is okay to assume normal activities after the vestibular tests, the tech was worried I might be driving home. So walking around and elevator rides caught up with me by the time we got to Dana Farber.)

Yeah, vestibular testing. Balance testing. Videonystagmography. It isn’t as bad as it sounds. I wouldn’t do it for the hell of it. I can tell you I didn’t want to drink anything (I kept being offered water) during this test. I learned stuff.

My sister in law is a wonderful woman with Downs Syndrome. I mean, she is seriously one of the most amazing people I know. In fact, when I say that I would give my crappy health problems to anyone else (maybe with guilt, but not too much) save for two people… she is one of the two people I would spare… and not just because the broad has enough on her plate as is. She is just cool. One of her health issues is jumpy eye movements… Something all who know her knows is because she’s “got vision.”

Beth, or Liz, or Elizabeth, I hear you, sister.

They’ve been seeing this with me a bit. I can’t usually feel it. On extreme right or left (left, especially, I know now.) or upwards eye gazing, my eyes do jump. It’s nystagmus one way and strabismus the other or something or other… It isn’t nearly what my dear sister in law goes through, though. Usually I don’t feel it at all.

Except yesterday. I mean, I knew what it must feel like when you’ve “got vision” often. Dear lord.

I think part of it is it is easier to ignore when you having something to look at. If I focused on the red dot, I was feeling the tug, jump, tug, jump. When my tech put the blinders down on the goggles… Wow. It was dark, I still had to try to look at where the dot was, and… all I could do was fight that damn tug, jump and it was extremely unnerving.

The really awesome part of the test is when the hot and cold air get blown in one ear, then the other. It blows for a minute. Generally, the last fifteen seconds are what kills you. Have I felt that sensation before? Yeah. It’s not what I get normally. But I have. I only felt nauseous after the spinning stopped.

And so I say I’m okay, and we walk over to do a hearing test. And I’m walking into walls, but seriously, this is not unusual. I mean, I was not doing this more than happens normally, especially given that I was tired and uncaffeinated and all sorts of crap like that. And the tech says to me, “Yeah, one side was definitely not like the other. I need to just pinpoint where the problem is coming from.” (As in, it seems, my eyes aren’t connecting to my vestibular system… is it a vestibular problem, a nerve problem, a brain problem?)

Me, because I am a dumbass and every doctor likes to minimize odd findings, says, “Well, I suppose that happens, though, right? I mean, who is exactly the same on both sides? I mean, who is really symmetrical?”

She said, “I need to find out where the problem is originating.” Well, shit. I was thinking this was going to be a waste of time, and that nothing would show up (as I was told when this was suggested two years ago, cough). With any luck, maybe it will actually paint a better picture when paired with my temporal bone CT and even my past MRIs. Yeah, what the hell am I smoking, right?

So the hearing test ought to be quick. It wasn’t bad. It wasn’t as quick as it should be, because I don’t hear quite the same in both ears. However, this seemed to be very much a case of no one is completely symmetrical and a certain amount of abnormal is very normal. It wasn’t enough to worry about, from what I gather. It required a couple more tests to determine this, though.

So I guess I am glad I did it. I mean, maybe it will shed some light. Maybe it won’t. Maybe there’s something that can be done, but… I don’t know. I see the ENT doctor in a week and a half (the tests take a while to go through).

As sick as it sounds, I hope to hell that something shows something they can deal with soon. I know that likely means a confirmation of a disseminated histiocytosis or that something has transformed into a nastier tumor. I am to the point I don’t give a shit. It all sucks, but what sucks worse is feeling like this and not being able to do anything and having to… wait and wonder if the fact I feel worse is worth telling them. I mean, they say it is… But no one wants me to call daily like that. Except my mom. And she’d rather I not call and tell her I feel shitty. I mean, a daily call with a “not shitty” message is preferable.

Hopefully I will update before more tumbleweeds dry up and roll through here again. But writing this has just about swept the floor with me for today. Dust kitties all over my elbows.

 

This entry was posted in Getting to the Point, Langerhans Cell Histiocytosis, The Bad, The Ugly. Bookmark the permalink.

3 Responses to Look! A Tumbleweed!

  1. Momshoe says:

    Nystagmus: The way it was explained to me re Beth was that it was indicative of brain damage (not necessarily permanent; in fact, I believe I was told at my work – addictions – that it can be chemically induced). If I got it right, the doctors blamed the nystagmus at least in part for her inability to focus, poor depth perception and balance problems. As you said, fatigue and such make it much more pronounced. When Beth is rested and focused on close work the movements slow down. The nystagmus is at it’s worst if she is forced to use only one eye at a time (the average eye test using the patch). She literally can’t see with only one eye and she is in danger of falling down! Any of this sound like your experience? (I must tell you, one eye doctor told me that Beth’s brain has adjusted – because she always had it – making the problem less disabling than when it happens suddenly to a person. Sorry!)

    • shoe says:

      Not sure how sudden it is for me at this point… Part of the balance test was to determine which side, what part (eye, nerve, brain) and how the mess up works. I has me some suspicions, and I am guessing it can either be compensated for or the cause is… removable. At this point, I can’t figure what end is up because I have no clue which side of my face is behaved (if either is) and truthfully… it could be anything going on in there. It could be courtesy of Mr. Pituitary Growth by way of thyroid activation or because Mr. PG has a bigger bottom now or because… man, everything is shoved in your face right in that area.

      I wasn’t going to go do this test… I’ve been walking into walls periodically for awhile, and I figured there wasn’t much else to say (sometimes they can’t do a hell of a lot, and there are a million points of breakage in that system – and they say they can’t do much a hell of a lot to me sometimes). I have no idea if it will make sense in conjunction w/everything. One of those things that is a pain in the ass mostly, and at this point I am more concerned whether it is caused by either the histiocytosis or a related thingamabob, because it is a measurable sign in an area that is becoming an increasingly troublesome spot (not because of nystagmus or the balance issues…) and some place I would like to avoid problems.

      My face is my ticket to fame! Oh, yeah, right… heh.

    • shoe says:

      Oh yeah… in my experience, close work causes vomiting. Heh. Well, yeah, it actually exacerbates the balance issue, as do things like screen refresh rates (I need to be careful on the computer.) I think close work is worse, often, especially if fine movements are required (sewing would be a bad hobby).

      I can believe the one eye thing. I do better if my eyes are closed (as opposed to open and behind goggles with a black visor over them, as I had to do yesterday). Was the patch a way to determine which side was affected? I am guessing Beth wouldn’t do so well w/the blowing air into each ear, which is how unilateral/bilateral damage is measured by the testing stuff. I can see her older brother not dealing well w/it. Hee.

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