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?

[dizzdvl.livejournal.com]

I would so wear that!

[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.

[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.

[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.

[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... :-)

[cjsmith.livejournal.com]

Yeah, quality life... that's very important to me, as I don't subscribe to the belief that all life is By Definition Good. Just like any other thing, life has to *earn* the "good" label in my universe. So my job is to make that happen. I admire your father's ability to make a hard choice in order to make his life better.

I fear blindness. BIG fear. It's my control-freakishness: I want to be completely independent, and there would be some big hurdles there.

Ramble any time. :)

[abenn.livejournal.com]

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

[cjsmith.livejournal.com]

Thank you!

[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]

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...

[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."

[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.

[dizzdvl.livejournal.com]

I just hope your Y is smarter than my Y ;)

I will try to get them in the mail tomorrow at lunch!

[cjsmith.livejournal.com]

Thanks big bunches!!

[vvvexation.livejournal.com]

On working within limits: oh yes. I've only just begun to forgive myself my own limitations, and I'm still constantly worrying about people's perceptions. Thanks for reminding me I'm not alone in this.

[cjsmith.livejournal.com]

Oo, well put. It's hard to forgive myself my own limitations.

[therobbergirl.livejournal.com]

You are totally inspirational. I just have garden variety plantar fasciitis and was feeling mopey at my upcoming honeymoon trip to the Natural History museum at the Smithsonian. But wow, you're pretty amazing and I figure that if you can find ways around your foot problem and even consider your limits and figure out how to work with them, then I can put up with some pain to see some dinosaur bones and some rocks. I am grateful that I can stuff my shoes with all kinds of supports and cushions, massage them with a tennis ball, and heat/ice them into compliance.

I wish that your feet could be treated as easily. But I'm glad that you are able to see around corners and find solutions.

[cjsmith.livejournal.com]

Inspirational? For wimping out? 1/2 :-) (I do feel like that's what I'm doing, in some ways. *sigh*. bad mental tape.)

I just have garden variety plantar fasciitis

Plantar fasciitis sounds truly annoying to me -- I'm not sure I'd be griping any less if that's what I had. I fear it. How long have you had that pain? (Rob had it for a bit over a year, if I recall correctly. One gal I saw this morning has had it for ten.)

then I can put up with some pain to see some dinosaur bones and some rocks.

Or you could see if the Smithsonian has scooters. They might! Then you would get to see dinosaur bones and rocks without pain. :-)

I'm glad there are some things that alleviate the pain. I hope the tennis ball massage doesn't hurt badly while you are doing it! I could imagine that it might. :-(

[gjo.livejournal.com]

Pilots take no special joy in walking. Pilots like flying. - Neil Armstrong

[cjsmith.livejournal.com]

Indeed. Time for me to get back in the air! That's one thing my feet aren't stopping me from doing.

[sunnydale47.livejournal.com]

Oh, CJ, I'm so sorry I didn't read your other post in time to comment. I've been in a tailspin again since I discovered the latest betrayal (the $$$$ one), and haven't been reading enough.

I was in denial for a long time. In my case I knew my disorders were permanent, but I insisted that I could do whatever I wanted anyway -- even though I knew I'd pay for it later by having to pretty much live in the recliner for a few days. I refused to get a cane or a handicrap^TM parking tag because that would be admitting that I was disabled.

I got the handicrap tag first because it was so painful to walk, and it was an enormous help. I'd had to stop going to the mall because I couldn't walk around and still make it back to the car -- especially if I'd bought anything and had to carry stuff. And in those days the mall was pretty much all the shopping there was in town, so it was a major problem. Being able to use the handicrap spaces made my life much easier.

But I still refused to get a cane because "I was too young". One day I was struggling along on the second floor of the mall, hanging onto the railing, and every time I got to an aisle that crossed over and had to walk without the railing it was awful. I finally realized that I could have something to lean on wherever I went if I just had enough sense, and I finally got a cane.

Once I got the hang of using it I realized how incredibly foolish I had been. I wished I'd hadn't forced myself to do without it for so long. I never used the institutional one my PT gave me -- I found a very pretty one and felt much better using that. Eventually I found a gorgeous hand-carved one from Kenya (it looks vaguely like these (http://www.beautysinternationalmarketplace.com/images/Nov16WalkStickCombo.gif)) (it was on clearance at the SERRV shop (http://www.serrv.org/) so I only paid $16 for it!!). I got compliments on it absolutely everywhere I went, often from total strangers, and I realized that instead of seeing it as a mobility aid, people saw a fashion accessory, and it was a great feeling knowing that people weren't pitying me for being disabled. (So if you ever decide to get a cane, it's worth spending a little extra to get a pretty one.)

Acceptance is not the same as "giving up." You can continue working to get better while still accepting that, at least for the near future, you will be dealing with the pain and reduced mobility. You can focus on making life easier now while you continue to hope for improvement.

I'll watch your journal more carefully now. You're always there for me with helpful, friendly or cheerful comments, as appropriate, and even though you obviously have a lot of wonderful friends, I want to be there for you too with whatever insights and help I can give.

[cjsmith.livejournal.com]

No need to apologize for not commenting. There's no requirement. :-) Plus I understand how what you've been through could put you in a tailspin! :-(

I insisted that I could do whatever I wanted anyway -- even though I knew I'd pay for it later

Oh yeah, that is me right there. Big time. I will have to change that attitude. The truth is that maybe I can do SOME of the things I want to anyway, and a few others with lots of breaks for icing, and occasionally I can decide it's worth it to "pay later" for an activity. But I can't do everything I want to. That's reality. I've got to accept that.

I shudder at the thought of going to the mall. Yowza. I'm going to have to do it soon, too; can't get new shoes by mail order. I don't know how you managed as long as you did with no other ways to get things.

Those canes are gorrrrgeous! Wow!

Thank you for your support. Even if you're not commenting, I know you're there, and I know you know what it's like, and that helps.

[cassidyrose.livejournal.com]

I admire you for looking for alternatives and for plugging away at this for so long.

I also feel for you. When I was diagnosed with osteoarthritis three years ago I fell apart. I was 27--how could I have arthritis? (simple answer: got dealt bad joints at birth, played competitive athletics for many years, and danced for many yeas). Anyhow, the hardest part for me has been accepthing that I do indeed have limitations, and that those limitations will probably just grow, not lessen with time. It is a tough one but I am so glad you are finding ways to deal.

And yay for swimming!

[cjsmith.livejournal.com]

Aw, thanks!

Yeah, I've had touches of osteo for almost that long. I think I was maybe 31 when I was diagnosed. That is indeed a tough one, and aside from glucosamine/chondroitin I know of nothing much that will help. Gah. And you're very active -- I can certainly understand that you don't want to just sit down and become a couch potato! :-(

[ericainohio.livejournal.com]

I wanted to write something and let you know that even though I haven't had much computer time for typing lately, I AM reading your posts about this. I'm so proud of you and I admire you for the way you're handling this.

I know this is a difficult time for you, and I don't want to sound pollyanna-ish, but I was struck by something as I was reading your posts and all the comments. I was impressed and so happy for you that there were mentions of all the things you CAN do - you can keep right on square dance calling (and for the record, I've *never* seen a caller actually dance, at least around here - so I don't think I'd worry about credibility eroding!), you are a pilot, and you can start swimming.

You're doing great, CJ. I'm proud of you. And I will *always* think you're Superwoman. ((((((Hugs)))))))

[cjsmith.livejournal.com]

Aw, thank you! *blush* I don't know quite what's admirable about this -- to me I'm doing the only thing I can -- but thank you. :-)

You're right that there are lots of things I still can do. My job right now is to focus on those, take joy from those, and keep up the exercises and stretches that just might improve the feet some day. I'm grinning at "never seen a caller actually dance" -- it can be rare! -- but at least out here all the Challenge callers also dance. Like you said, though, it'd be a long time before my credibility will be strongly affected by not dancing. By that time maybe I'll be back to it again, or in a wheelchair and thus exempt. Who knows what the future will bring?

Thank you so much. I still haven't the foggiest why you call me Superwoman but hey, right now I'll take it. Maybe if I put on a cape I could fly. ;-)

Internalized messages

[rampling.livejournal.com]

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.

I sense from reading your posts that you've internalized at least some of these counterproductive messages as well. I'm just guessing here (I'm no therapist, duh!), but this is what I've interpreted from things you've written. What you might want to do about these internalized messages is quite another question. Something about holding them up to the light where they might not survive would be my guess, but I really don't know.

And of course many other people will still think or act on these negative messages too -- but you're probably used to being a member of groups that are associated with negative stereotypes. A big problem is -- like internalized homophobia -- if these negative stereotypes act in concert with your own internalized stereotypes and fears, these messages from others will hurt a lot more.

It just seems to me that a big part of dealing with your challenging circumstances may be the internal efforts to change the messages you've inherited somehow.

OK, this is sounding like advice, and I really don't mean to leave advice. I just want to put these ideas out there for you, as some possibilities, some thought fodder. Please, please ignore if it's off base.

Re: Internalized messages

[cjsmith.livejournal.com]

I sure have internalized some of those, yeah. I sense you've struggled with this as well? I'm just guessing from your immediate understanding. :-)

if these negative stereotypes act in concert with your own internalized stereotypes and fears, these messages from others will hurt a lot more.

No kidding. I have the "women are inferior" one etched on my bones, as it's how I was brought up and it took until I was in my mid-twenties before I met someone who thought differently -- so sexist comments sting a lot more than (say) jokes about bisexuals. I've never believed there was anything wrong with being bi.

Fighting the "tapes" will be an integral part of my new attitude, yeah.

I really don't mean to leave advice.

No worries -- I just parsed it as "conversation." :-) And thanks for grokking.

[jupiter29.livejournal.com]

I'm glad you have so many supportive people in your life. I must admit I didn't read the original post until yesterday, so I didn't bother to respond, since it had all already been said. But it sounds like you got some good advice. As long as you don't do things that are irreversible, I suspect living in the now (even such as it is) will be better for your mental health than living in this between place you find yourself. So even though I wish with all my heart I could snap my fingers and make you better, I am very proud of you for taking the steps you are. Just wanted you to know that. :)

[cjsmith.livejournal.com]

Thank you, sincerely, for saying that! I guess I never realized it would be this rough.