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.


This entry was posted in Langerhans Cell Histiocytosis, Not Otherwise Specified, Photos, Hobbies and Worthwhile Stuff, The Bad, The Ugly. Bookmark the permalink.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>