Thank you

[cjsmith]

Thanks to everyone who offered comments, support, and ideas in response to my "Deadline" post. I appreciate not only the support but the connection, the knowledge that someone out there hears and understands where I'm at with this. Quite a few someones, even. It means a lot to me.

Our culture is very big on the fighters, the people who never ever give up. We don't honor the people who work within their limitations, or who take a break from fighting for a while, even if it's obviously the smart or sane thing to do. There's a subtle disbelief people show when faced with someone who really has tried an enormous number of things none of which has worked. (Sometimes I think Americans believe an amputee should be able to grow a new leg by force of will. Failure to do so is some sort of personality flaw. I have my theories about how all this is a big case of denial, but this post is long enough.) I've bought into this attitude more than is healthy.

Not that I'm giving up exactly. I'll still go to physical therapy and to my doctor. I'll do my exercises and my stretches and I'll apply castor oil to my feet (that's the latest, and it's too early to say whether it's helping, so I won't ditch it now).

I'm definitely going to apply for the disabled parking hang-tag. A group of people in the waiting room at physical therapy this morning said the same: "I did that; it helped!" "Oh, DO it, it's what you need right now that counts." One woman offered to get me some information on a chair for cooking -- a lab chair, so it rolls *and* can go up and down (high enough to stir pasta, low enough for getting pans out of the cupboard). I told her I don't cook much, but to be honest, I admit I did bake more a while back. It was thoughtful of her to ask about cooking and offer to get the name of her "godsend" chair. She can walk, some, but she also uses a scooter, and she's had pain in the soles of her feet for ten years. I think I'm glad I'm not waiting for ten years to get the placard.

And enormous thanks to dizzdvl for offering to send me a swim cap and goggles. I haven't decided between the nearby high school's pool and the Y, but I'll do one or the other. There, you have my word on it: I will swim. Now that I've made a public declaration I'll do it.

Comments

[mactavish.livejournal.com]

:)

When I was first diagnosed with "probable RA," my doctor picked up a pad of forms, filled one out, and handed it to me. It was for a permanent disabled parking placard. I said, "I don't need this." He said, "You will." He was right.

But please note that Rob will be saying, as Casey does, "CJ, I need to go to Fry's . . . want to come?" ;)

[mactavish.livejournal.com]

Also, I'd love to find out about the chair. I sometimes use barstools for cooking, but they're not mobile, and don't help me get things out of bottom cupboards without squatting.

[cjsmith.livejournal.com]

BWAHAHAHAHA

Make that thing bright purple and I might even wear it. ;-)

If I get the hang-tag instead of the plates, I can put it in Rob's car when I'm riding with him, right?

[cjsmith.livejournal.com]

Excellent - two people benefit! I will pass along the information when I get it. (Ping me if you don't hear in a week and a bit.)

[mactavish.livejournal.com]

I like the multi-colored ones, very queer, but I couldn't find a pic.

You can have a hangtag and plates. My car has plates, I carry a hangtag in my purse for riding with Casey or Joe (or you or whoever). If there had been a blue spot at the DMV -- they were all full -- I'd have stuck it in the Saturn today, as it was officially transporting me.

[dr-scott.livejournal.com]

Like many things in life, some problems can be overcome by sheer force of will and willingness to endure pain and hard work, and others can't. A lot of injuries only recover through a very long period of working around them. And some never get better at all... so finding a way to do what you need to despite it is the "macho" thing to do.

[quasigeostrophy.livejournal.com]

There's a subtle disbelief people show when faced with someone who really has tried an enormous number of things none of which has worked.

That's the situation my mom and siblings were in when my dad reached the just cut it off stage. I don't know if they realized how much he was already going/had already gone through.

The way I look at it is, whatever you feel you need to do to keep up a certain measure of quality life, go for it. Yes, it sucks you might not do certain things again. It's made me think a little, given how visually oriented I am, about what the heck I would do if I was suddenly struck blind. I don't know now what I would do, and I know I would go through some bad phases, but I don't think it would be the end of the world.

I'll quit rambling now... :-)

[mactavish.livejournal.com]

Twenty years ago, I had a ruptured L5 disc, was on bed rest (except, eventually, for PT), couldn't work, my doctor said that if I didn't follow her protocol perfectly the next step was surgery, or I'd start to have enough sciatic nerve damage for real function loss.

My roommate rolled her eyes at me and said that her father had instilled in her a Work Ethic and that if I'd ever developed a work ethic I wouldn't let this pain bother me but would suck it up and go on living my life.

I'm glad I didn't listen, as my doctor's protocol worked, and I only get occasional sciatic twinges now when I sit wrong for too long.

[abenn.livejournal.com]

I'm so glad that you've gotten such great support. Good luck going on from here!

[datagoddess.livejournal.com]

Oh CJ, it makes perfect sense for you to look into things that help you in the here and now, instead of pushing and hurting. When the asthma, migraines, etc were keeping me down, I felt awful and that I should be able to push through the pain and other limits. No. No no no no no.

There's a big difference between working within limits and giving up. Personally, the hard part was accepting the limits. I should exercise more, but most exercise aggrivates my asthma, even walking. When I get a migraine, I have to take the meds and lie down, because pushing through the pain will just make it last that much longer.

One thing I've admired about how you're dealing with this is how you look for more solutions instead of giving up.

[cjsmith.livejournal.com]

I probably don't qualify for plates as they're permanent. But I'd totally carry the hangtag around with me.

Wow, I've never seen all blue spots full. It happens though, huh? I suppose the DMV would be one place it'd happen often... everyone going back for their next sixty days of hangtag, if nothing else! :-)

[cjsmith.livejournal.com]

That roommate's comment was AWFUL! I almost wish her the same health issue so that she'd learn something. Almost.

I'm glad your back is much better now.

[mactavish.livejournal.com]

If you qualify for a blue tag (and you probably will, red is for things like recovering from surgery, a broken leg, etc.) you qualify for plates, but you can get what you like. :)

[mactavish.livejournal.com]

She was awful for any number of reasons. One reason deyo and I stick together is we're each each other's favorite roommate so far. ;)

[cjsmith.livejournal.com]

Thanks. This makes loads of sense intellectually, even though I'm emotionally susceptible to the FIGHT OR DIE attitude. Maybe that's my lesson from all this -- the thing I'll be glad I learned when I look back ten years from now.

[mactavish.livejournal.com]

So I like shopping via images.google.com :)

purple (http://www.traveltrunk.com/store/swimcaps2.htm) and purple (http://www.tlccatalog.org/subcategory/dept-11.html) and you can't live without this (http://www.bubba-b-serious.com/images/swim%20cap.jpg)

[daltong.livejournal.com]

Do you have the name of her godsend chair?

I've been disabled and unable to work for nearly 6 years now. Cooking is always a painful process; I can't stand up very long and bending over is very, very bad. People had suggested a stool before, but I didn't know where to get one. Then a few months ago I got a sewing table that turned out to be Very Tall, and a couple of days ago I finally went on froogle and found a lab stool. I've ordered it, but I'd like to know the name she gave you in case mine doesn't work.

I apologize for not commenting on your Deadline post. That is such an involved and confusing topic for me, that I'm not entirely sure what I would have commented, and whatever it was, it would probably have taken me at least an hour to write...for now I'll just say "yeah, wow, been there, still am there, haven't solved it."

[daltong.livejournal.com]

I think I've only had one person actually say something like that to me, but I always feel like everyone is thinking it. That's one of my growth challenges--to learn to forget what I think everyone else is thinking and simply deal with myself and what I want and what I think is right. I find it surprisingly hard to do.

And because my injury is hidden, and because it goes quiet when I am inactive, I keep thinking I'm lazy. I keep forgetting that I'm not working because I'm injured, not because I don't want to. All those plans and goals I had before the injury are still in my head, which means I get down on myself for not doing any of them. It's all part of the journey.

[daltong.livejournal.com]

Oh, also, rlpowell has pointed out that a lot of people who've had very little illness or injuries in their lives have a very hard time understanding the kind of sickness that can actually keep you from doing something. So you might say those of us who go through this crap are more empathetic as a result. Go, us?

[cjsmith.livejournal.com]

Oo, that first one looks vibrant and that third AIIIIIIIEEEEEEEEEE. :-)

[cjsmith.livejournal.com]

Oh - I thought some of the blue hangtags were temporary. Well, I'll see what the doc says. My impression is the DMV will give you whatever the doc says you qualify for.

[mactavish.livejournal.com]

The blue ones have exp. dates so that, say, Casey doesn't take mine and use it forever until I die, or so folks who get away with using stolen ones can't do it forever. But they never have to be reapplied for, the DMV just sends them out fresh every two years without asking.

[cjsmith.livejournal.com]

I don't have it yet but I'm happy to post it when I get it. She's going to find the name and then leave it with one of the staff at the physical therapy center, and I'll get it next time I'm in for p.t. at that place (a week from tomorrow).

I suspect the main problem with a stool is that it wouldn't be tall enough. I could imagine getting off the stool to get something from a low cupboard, but it'd be hard to levitate above the stool so as to stir a big pot! If bending over is bad, though, I don't know any kind of stool that would help with that, so I can imagine just not using the low cupboards. :-(

No one's required to comment on the Deadline post, so no kicking yourself allowed :-), but thank you for the "been there". There's a lot of us who've been there. I'm learning that at least.

[daltong.livejournal.com]

The stool I bought goes up to 33 inches. I hope that's tall enough!

[cjsmith.livejournal.com]

The here and now, yeah, that makes sense. I think the fact that some of the parking placards are temporary is a big emotional help for me. I'm not labeling this a permanent problem by getting one of those. I'm just accepting the reality that right now it hurts a bunch.

Accepting limits is really emotionally tough -- for me and I suspect for many people. It's hard to recognize that I've just been dealt a less pleasant hand (in some ways) than other people get, and it's not fair, and it hurts, and there are some things I just can't do. (Actually, technically I *could* do them if I had a higher pain tolerance. But I'm the one who gets fillings without novocaine, so maybe my pain tolerance isn't the problem.)

Thanks (*blush*). I might be too stubborn, but at least I will hopefully also be creative about it...