I'm getting worse

[cjsmith]

I wrote about asking for wheelchair assistance in airports. I said it felt weird because I'd never done it before. I thought briefly of saying "Looking back over the last eighteen months, I probably should have." But I thought a little and I realize that's not necessarily true. Looking back over the last eighteen months, I've definitely had times when I've been better than I am today. When I went to Japan I walked a LOT. I could walk a lot. It hurt, of course; it hurt big bunches; I was never not in pain. But there's absolutely no way I could do that much walking today -- not multiple days in a row. I could, and did, back in January.

I'm getting worse. This is not good. This is very scary.

One other reason it felt weird is because I'm calling for wheelchair assistance for flying to and from a square dance convention. What's wrong with this picture? Heh! Of course, just because I'm going to the convention doesn't mean I'm able to dance much -- I'm not, not by a long shot -- and I'd like to conserve every shard of mobility for times when I *can't* get help. This, too, shows how I'm deteriorating. At other dances in the past I have only thought about whether I could take enough breaks. For this one I'm not even considering attempting to show up at every session. One session, with breaks between tips and maybe sitting some out, is my limit for a day. I don't even know if I can do that much two days in a row.

I envy people with broken legs because they heal. I envy people with conditions that are hideously uncomfortable but curable. I envy people with incurable things that don't affect fundamental stuff like standing up. I've long since quit envying healthy people. They're not even in my universe any more.

Comments

[quasigeostrophy.livejournal.com]

*hugs* I wish there was something I could say and/or do.

[melanie.livejournal.com]

it just isn't fair.

have they even definitively decided *what* the total problem is yet? or is it that they know the problem en toto, but the treatment options are nebulous gambles at best?

it really, really isn't fair.

[deedeebythebay.livejournal.com]

It just blows my mind away to think of this happening to you the way it has. I can't believe there is nothing they can do for you. I wish there was something useful I could say. And I know there isn't. All I can offer are hugs to be given in person some day.

[wordweaverlynn.livejournal.com]

Damn, I am sorry.

It seems so unfair.

[datagoddess.livejournal.com]

I envy people with broken legs because they heal. I envy people with conditions that are hideously uncomfortable but curable. I envy people with incurable things that don't affect fundamental stuff like standing up.

I envy people who can breathe without wondering if what they're doing is going to cause an asthma attack. Remember my dilema a few months ago wondering if I should use the scooter carts in the grocery store, since the more I can use assistance the more I can do - conservation of energy.

IOW, I can relate. I think we should be issued new bodies at 35.

[tsjafo.livejournal.com]

*hugs*

[ohhjuliet.livejournal.com]

You're always in my thoughts. xoxo

[ashiegrrrl.livejournal.com]

I envy people with broken legs because they heal. I envy people with conditions that are hideously uncomfortable but curable. I envy people with incurable things that don't affect fundamental stuff like standing up. I've long since quit envying healthy people. They're not even in my universe any more.

I know _EXACTLY_ how you feel. *hugs*

[lesliepear.livejournal.com]

(HUGS)

Being treated in a place with people much sicker than me makes me count my blessings also.

[cjsmith.livejournal.com]

Nope, they don't know what the problem is. Certainly not the cause, and from what I can tell not the current situation either.

I think the person who has the best handle on it is probably my current physical therapist. He can't even try to figure out how it got this way but he can say what he thinks the pain is from (irritated nerve plus inflammation of joint). His theories seem to fit my symptoms pretty well, so I'm guessing he's the closest to being right.

[cjsmith.livejournal.com]

I hear ya. Breathing is pretty darn fundamental. I remember that when I read Chris Reeves' autobiography, Still Me, he wrote about hearing of spinal injuries and he'd ask immediately what vertebra (what level). His first thought upon hearing the answer was often "Oh good, he can breathe."

[cjsmith.livejournal.com]

*nod*. I am hoping you get answers soon!! *hugsback*

[cjsmith.livejournal.com]

Yeah, that makes lots of sense. When I go to the podiatrist I see people who are "sicker" than me but they are curable. Maybe I need a good dose of perspective in, say, an oncologist's office! That would knock me out of the poor-me for a bit, that's for sure.

[cjsmith.livejournal.com]

Thanks. Yeah, it is unfair -- *shrug*. I have to learn to deal with that, and so far, I'm not dealing very well.

[cjsmith.livejournal.com]

Thanks!

[cjsmith.livejournal.com]

Thanks!

[cjsmith.livejournal.com]

Thanks. *hugsback, also in person some day*. Bleah, grr, grump... I need to learn how to deal with this, somehow.

[cjsmith.livejournal.com]

*hugsback* Thanks. So do I ;-)

[lesliepear.livejournal.com]

Unless you look for the scar on my neck, you can't see why I'd be going to Sloan Kettering. There are some sadly who do appear to be very much in need of care there :(

[jtidwell.livejournal.com]

Wow. I feel really, really bad for you. Y'know, I was talking to one of my doctors a few days ago, and in the course of the conversation, he said for the first time, "This is no longer about curing it. This is about managing it."

Giving up like that just is not in my nature, but like you, I don't know what else to do because no one understands the underlying biological mechanisms. And what I've got (no details here) isn't nearly as bad as what you have -- I can still be active! I can only imagine what you're going through.

New bodies at 35. I liiiiike that idea. :-)

[cjsmith.livejournal.com]

Yeah, that's a dose of perspective all right. I'm SO glad you've come through this as well as you have, and I hope you don't have any further fights ahead of you.

[cjsmith.livejournal.com]

"This is no longer about curing it. This is about managing it."

Oh wow. That's a dash of cold water, eh? I don't know what you're living with (and I understand if you don't feel like explaining) but whatEVER it is, knowing that it won't go away can't be an easy thing to accept.

I like the idea of new bodies at 35, too! That's just about exactly when I needed mine. Well, if you don't count needing one at twelve.

[msmichelle.livejournal.com]

CJ, I wish I could help. I wish medical technology could help...and hopefully it will someday soon.
What you may be currently lacking in physical foot related issues you definitely make up for in spades, intellectually & intuitively.
Big huge hugs to you!

[jtidwell.livejournal.com]

Send me email at my old school address, and I'll tell ya...

Hugs!

[cyan-blue.livejournal.com]

Hugs, CJ...