Tuesday, July 14, 2009

Does The Pasted Smile Have To Be On 24/7?

I remember seeing a therapist (voluntarily; my own idea even!) many years ago, long before anyone ever thought of producing "The Secret." It was pointed out to me that I smiled ALL the time, even when I was not happy inside. I had to learn how to let my feelings out. Well, that was then and this is now. Now I've got to dig through old musty storage boxes to see if I can find the Smile All The Time magic vial I must have been using then. Because now, that is a freaking requirement.

My sense of humor is the first thing that gets me into trouble. I keep trying to remind myself that I speak an ancient language understood perhaps still by people who live in New York City, but certainly nowhere else. Most people do not like me making dry observations of the world around me. They want That Smile and Sweetness! Flip the switch and turn that back on, girl!

I'm actually a generally happy person, but contented so much of the time that it is EXPECTED of me. And so I'm never really seen as being happy anymore because that's just "normal." To register happiness I would have to dance on the tables or something, and there is no way I'm getting up on those flimsy, unstable things and putting my feet on the last patron's filth, so forget it. Times have really changed. I'm heavier and tables are lighter than they used to be.

So if I'm not smiling I must be DOWN and DOWN is NOT ALLOWED in the new millennium! We create our own reality! Smile girl; create some world peace!

But you know, I could just be tired? Resting?

Lately I've been struggling with the joint pains again. They are not anywhere near as bad as they could be, or as they indeed have been before. In fact I could probably totally ignore this latest bout if it weren't for the fact that it involves, as usual, all of my joints. Except possibly for a few in my back, and I managed to injure most of those over the years of trying to lift things that were too heavy for me but I wasn't cute and sexy enough to get help.

There are joints where people don't think of...or at least I didn't think of until pain let me know. My vocal joint HURTS and that's why I've lost so many "phone me don't email me" friends. But today it hurt to use my voice AND my hands. Oh and my arms, shoulders, hips, legs, knees, ankles, feet (there are way too many joints in our feet, Lord, just please make a note of it). Even the tips of my fingers hurt from mild vascular stuff. My scalp hurts from tiny little inflamed hair follicles. Of course it hurts to breathe; that's so common it's normal for me now. And I won't go into intestinal pain; way TMI.

All of that is: not bad. My blood tests will probably be ok. And so I will not be treated for this flare. And I'm ok with that because the treatment options are toxic and I'm already taking as much of them as I want to...except for the ones there is no way I could afford to pay for.

It's not just the lupus. I have way too many things wrong with me now. I had two doctors try to tell me that, but I know it. I'm supposed to be trying to get better. Believe me, I am trying. I'm always trying. It's probably why I'm still here.

But I am getting tired. And nowadays there isn't even anyone to share the struggle with and get a hug in return. That's not POSITIVE THINKING, doncha know.

Yes, there are moments when I want to give these wimps an ice storm instead of the few drops of rain they've had to cope with once in awhile, and add the one-fingered salute to go with it. But the moments pass quickly. I'm not wasting my precious energy, which is in short supply, on them. I'm really hoping I'm not going to kick the bucket soon, but there are so many things I really want to get done first if I am. So I'm a girl in a hurry. I'll try to remember to SMILE as I shove idiots out of line, slide down bannisters, steal a fast car, hitchhike to the finish line if I have to.

No, I don't have a death wish. I WANT to live. I'm hoping I live long. And I'm not in any kind of physical crisis. I just sort of sense my body is whispering something to me that frankly I don't really want to hear.

Oh God, the lectures I would get for this post if quite a few people I know saw it! Good thing no one reads my blogs! Bwahahahaha.


  1. Well I just read it :)
    Don't you find Lupus is extraordinarily circular? You move forwards in your mind's eye but your body constantly loops you back into the old familiar places of pain, and smiling through pain.
    Good luck with today.
    Shaista (Lupus in Flight)

  2. LOL yes sometimes I think I've escaped the (vicious) circle but then I get yanked right back into it! (((hugs)))

  3. Wow! I can completely identify. I hope you're feeling a bit better than you were.

  4. Can you please share the following info with all of your lupus contacts?

    Lupus Foundation of America Needs Your Help -- Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act

    Go to http://capwiz.com/lfa/home/

    Cclick on the link "Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act," enter your zip code in the box called “Call Now” and click on the “go” button. You’ll then be presented with the contact information for your senators, as well as get talking points for what to say when you call.

    Please ask your family, friends and coworkers to call on your behalf as well.


About Me

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I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at http://beepbeep.livejournal.com that I've had so long I'm probably stuck with :) My other blogs are here on blogger...