Friday, January 18, 2008

what I'm wondering

People who don't have chronic diseases, who don't have to take medications or they'll die, who don't have to deal with one bodily system after another going wonky on them -- what's that like?

What's it like not having to be careful how you move or lift or bend, so that shooting pains don't run up and down various limbs? What's it like being able to eat without wondering how sick it's going to make you feel later? What's it like being able to get up in the morning -- or let your stomach get empty at other times during the day -- without feeling like you're going to puke?

What's it like not having to take two dozens pills everyday, just to keep the cacophony down below 4 on the pain scale? What's it like being able to talk and swallow without feeling like there's something stuck in your throat? What's it like getting up in the morning without feeling as if you've been hit by a truck? What's it like to not be freezing all the time, and to not have skin so dry that your digits crack?

I don't remember what it's like. The hit-by-a-truck thing started in my early 20s, along with a whole alphabet of stuff that doesn't really bother me now (PCOS, IBS, TMD) but that made my college years miserable. (Well, the TMD reappeared but now I wear a splint to keep it under control.) That stuff is nothing compared to recurrent thyroid cancer and the current gastroparesis/reflux combination nightmare.

I'm thinking it must be awesome. Like, if you're feeling tired, you could sleep and when you wake up, you'd feel better, not just less sleepy.

I'm jealous, I admit it. On a daily basis, I literally ignore any RA- or fibromyalgia-related twinges, because they rarely register as anything more than twinges. The things that are bothering me the most right now are the poorly-controlled reflux and the resultant sore and lumpy-feeling throat. (I am perversely thrilled that the "rapid transit" problem I've been dealing with for the past few years has resolved, even though the resolution -- discontinuing Prilosec -- is contributing to the uncontrolled acid situation.)

I'm not consciously aware of it, but I realize that I expend a lot of energy on ignoring or managing these symptoms. Some days I just get tired of it, even though it's not stopping me from doing anything I want to do. OK, that's not really true, I've got a slight near-depression thing going on that's making everything a struggle, even though I am accomplishing things at a decent pace. I should be happier about those accomplishments, but it's like there's a gray pall cast over everything that's taking the glow off.

I really, really hope I can get my meds adjusted tomorrow. I think it could help a lot. I'm dreading the appointment because the last one did not go well and I don't think tomorrow's will, either. But I need help and I'm not sure where else to go for it, if my endo boots me to the curb for having the temerity to suggest, again, that she might consider mailing lab results to her patients instead of forcing them to schedule follow-up appointments.

No matter what happens it will be a relief to get the appointment over with, and to know where I stand with the endo. And no matter that this post makes it sound as if I'm barely functioning, nothing could be farther from the truth: I'm doing well enough that I can do a very good imitation of a healthy person, or a generally healthy person with a really sore throat. My gastroparesis isn't nearly as bad as I know it could be, and for that I'm thankful. I won't say "never been better" because that's clearly not true, but I'm OK. Really, I am.

2 comments:

Impkitti said...

I don't want to sound whingy, but if you find out would you let me know?

I have similar issues (fibro, artho) and currently they are trying to decide if I have diabeties or MS. I have to wait another 6 weeks before they will do any more tests. Meanwhile, my hands, feet and face are all numb and tingly.

Healthy folks just don't understand.

I enjoy your blog because you are so up front about what is going on, but you don't whinge - you are pro-active. I take encouragement from that.

Thank you for being so positive.

Lots of good thoughts going your way.

Impkitti said...

I don't want to sound whingy, but if you find out would you let me know?

I have similar issues (fibro, artho) and currently they are trying to decide if I have diabeties or MS. I have to wait another 6 weeks before they will do any more tests. Meanwhile, my hands, feet and face are all numb and tingly.

Healthy folks just don't understand.

I enjoy your blog because you are so up front about what is going on, but you don't whinge - you are pro-active. I take encouragement from that.

Thank you for being so positive.

Lots of good thoughts going your way.