This Little (Strobe) Light of Mine

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

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

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

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

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

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

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

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

What about just little tiny subvocal sort of blips.

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

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

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

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

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

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


This entry was posted in Getting to the Point, Langerhans Cell Histiocytosis, Not Otherwise Specified. Bookmark the permalink.

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