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.

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

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