Feb. 4th, 2017

Settle out

Feb. 4th, 2017 04:12 am
quirkytizzy: (Default)
We've managed to cut the number of pill bottles down from 16 to 9. This is a HYUGE relief on my stomach, as handfuls of pills tend to cause indigestion. I'm still eating close to 15 pills a day, but that's due to a few meds needing to be taken twice a day. Still, it is a vast and major improvement.

While I am on a proper Prednisone taper dose, I can still feel the Prednisone restlessness. It's pretty much me waking up just a little too early, stepping outside to smoke a million times, and endlessly pacing the small length of this apartment. I do get the morning chores done, but those can only take up so much time.

It is frustrating. I'd JUST fully tapered myself off the Prednisone last month, only to be put right back on it a few days later in the hospital. This is another tapered dose, but it feels like any other steroid run - restless, aimless, and tired. I am still managing more sleep, and good sleep at that, but any steroid at any dose hits hard.

As I tell all the doctors at the hospital, "Steroids put me on the 6th floor. Can we please just not do the steroids?" They'll nod their heads sympathetically (as they know the 6th floor is the psych ward) and then say that my infection (or anemia or hemoglobin or insert x or y variable) requires aggressive treatment.

It always requires aggressive treatment, no matter what "it" is. I know the early stages of treatment, especially when you have a patient whose kidneys already failed her once before, are a race against the clock. It's a matter of trying to outflank the symptoms. It's trying to keep one step ahead of the complications that could arise and kill you.

It's still frustrating and it still leaves me dealing with the side of effects of those aggressive treatments. One of those side effects is trying to handle over half a year's worth of profound insomnia. It accumulates, it builds, it is exponential. Even as the sleep itself improves, the length of time and dosage of Prednisone still washes over me in waves.

I know at some point this part will improve. I'll be off the Prednisone entirely within two more weeks. At least until the next hospitalization, which has averaged out to once a month over the last six months. So that part doesn't give me much hope.

But eventually it'll settle out. It has to. Even if at some time I have to point-blank refuse that treatment, it'll settle out. Maybe I'll just start listing steroids as something I'm allergic to. It might take three days before the "allergy" symptoms set in, but good goddamn, when they do, they do.
quirkytizzy: (Default)
You may be right, Matrix. It may be that steroids are the only treatment for certain parts of certain disorders. It's certainly one of the most common pills prescribed for lupus. But I just don't want to think that I'm that screwed. That I'd be painted into such a corner just because I got sick. I do know it wasn't terribly long ago that the only treatments for lupus were chemo and radiation, and that it was considered a fatal disease.

Looking at it that way, steroids don't seem SO bad...except they are horrible. Still, I guess incurable is a much better word than fatal.

Idk. Science needs to hurry the fuck up and figure this shit out, because I'm sure as hell not smart enough to cure lupus.

This blow-by-blow bullshit diary of my disease makes me crazy sometimes. It is an outright obsession. I suppose that makes sense, given how sick I still am, but geeeez. It feels like I'm listening to the same album over and over again. I'm beginning to be able to apply different connotations to the lyrics, but it's still the same band singing the same songs.

Does that make sense? I'm not sure if it did.

I feel as if I have no sense of give and take lately. It's all been take. Money, food, driving, emotional reciprocation - I've been taking those from people and giving them little to nothing in return. I know, realistically, physically, there isn't much I CAN give. No one is faulting me for it, but ***I*** feel it, and I feel it as being very wrong.

In an early episode of iZombie, the main character comes to the realization that she'd been spending so much time thinking about what she lost, rather than realizing what she had to give. Rewatching it as a person who requires some pretty heavy caretaking somedays, it really hit close to home.

Granted in the show, she uses her zombification to solve murders - and I am neither a zombie or able to solve murders. But what is it that I have to give?

Everyone around me points to my writing and goes "DUH. That's what you can give." But give what? A memoir that I have no idea how to start, structure, or even what it'd be about? Grant-writing, to which I think I'd like to do, but often fall short on energy to DO that kind of writing? Print out the last 13 years on Livejournal and just start shoving it at strangers on the streets?

Technicalities aside, I'm not sure if writing is what I'd want to give. Like, maybe it wouldn't be enough. It's certainly not going to make up for the thousands of dollars I've been borrowing, or for long nights Jesse has spent on hospital couches with me. It won't make up for the unrelenting avalanche of lupus bitching I've been throwing at all of you.

Is giving about making things up to people? About balancing the scales? It seems as if it should be. And if so, how do I balance those scales? What do I do, how do I serve others in a manner that will tip things closer to the middle?

What is my purpose here, in the middle of all this taking I've been doing lately? Where do I fit in?

I know, I know. Philosophy's been trying to answer those questions for thousands of years now. Me and my tiny little journal and what I'm writing in my tiny little journal are not going to be what solves them. But they're questions that, along with my red blood cells being eaten by lupus, are beginning to consume me.


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