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.

Sick people targeted in CA budget crisis

It's not easy in CA with a serious or chronic illness any more. This budget process itself is getting sicker than any of us are, IMHO.

Please take action if you are a CA resident--or ask any CA residents you know to read, sign, and pass on:

CA Budget Crisis: Murder Is Not An Option

Happy Birthday, USA!

I've had to spend most of today in bed but I get to go out to dinner tonight and then to a special event :)

Hope my entire country had a happy birthday!

Photo Credit

I KNEW IT #5,369,281

I knew my big toe was infected (again) in a deep place near the nail that no one could see. What can I say; the intense pain is a special clue I receive that others don't. I have a very high threshold for pain so I have been up and around on it, and have basically been trying to dig around and find it myself (while shoving in every antiseptic I could find.) I wanted very much to go to my podiatrist who would have taken care of it but I didn't want to deal with the Wrath of Dburr if I were not ready for Anime Expo tomorrow at 0600 or so...

Anyway today in the drugstore formerly known as Longs my toe decided to make a dramatic announcement and drip horrid green stuff all over. I'm glad whatever was in there is coming out. I'm glad I was wearing sandals.

I gave it a hot soak with hospital antiseptic but this isn't something I can take with me when traveling. It would leak and stain everything. I'm not sure if I have band-aids, and I'm also not sure I should keep walking on it so much.

But I have to clear a path to the old crab tank in the room where all the furniture hasn't been moved yet because two molting crabs are in it and will need water while I'm away. And if I do need band-aids I will certainly be the one going out to get them. I haven't had enough to drink today and had a dizzy spell in a scary place. But I've got to get the laundry in! Somehow! Dburr isn't home yet and I think his kitchen needs my cleaning skills anyway. The betta fish is sick. I need to get a big dish for the biggest crab who is knocking the small one over when he tries to take his daily salt bath.

Oh...and I'm tired :) I think I got too much sun just getting in and out of the car today.

But I was right about my toe, dammit.

The word is now out that Michael Jackson had lupus

As a friend of mine wrote to me in email, it would have been a tremendous help to those of us suffering from autoimmune disease had he disclosed this publicly. Basically we have all been waiting for a major celebrity to either have one of our diseases and go public or to just adopt us out of kindness. Celebrity involvement seems to be the only way these days to get the media exposure needed for increasing awareness, which helps with early diagnosis and thus less severe disease, with fundraising for research and for helping patients, and with educating the public so that patients experience less prejudice and misjudgment.

However, I know private individuals who keep their lupus a secret. Their reasons generally have to do with employment and health insurance concerns. As someone who made the decision years ago to do the opposite, to be as public as possible in order to help others get diagnosed earlier in the course of the disease than I was, I know from experience that it is in fact easy to encounter problems with employers and health insurance once one is known as a PWL (person with lupus!)

As anyone who has ever had the good or bad fortune to be around me for any length of time knows: the Amercian social safety net for the chronically ill, and the opportunties that one would think exist for creative ways to contribute to society while still having health care, food, clothing, and shelter, are not there. Not there to the point that people even needlessly lose their lives. And improving this situation been so consistently opposed by one political party, for reasons I don't completely understand, that I had to leave that party over this issue. (Now, as an odd kind of passionate and vocal political moderate, I am equally hated by everyone, lol.)

Anyway, maybe MJ had lupus. He certainly fits the pattern of disappearing and reappearing (when too sick to do anything else some of us have no choice but to have "down time",) of doing odd things (could be some brain involvement, or pain med side effects, but a lot of the things have a good lupus explanation, like the sunglasses and the parasol,) and of being mysteriously ill a lot but with different parts of the body being affected.

Here is a link , and another link .

Admittedly I've known of the rumor that he had lupus for years now. But I never did learn of any confirmation, and there are a lot of rumors about celebrities which turn out to be untrue. Some, of course, have publicly disclosed it and have even helped with fundraising for lupus organizations.

I've heard that Emily Dickinson and Louisa May Alcott might have had lupus (two writers whose work I have loved) ... I admit to being curious!



Michael, rest in peace.