If Self Improvement is Masterbation...

I have not written much about me personally lately. I shy away from that sort of thing when I am stressed. So here is what is going on with me and mine for the folks that are interested. All of this is happening with tons of help from the family, particularly the Menfolk. I would still be splashing in a miasma of good intent, stalled efforts, and drama without their support.

Umbra does not care if this post gets finished.

So if I get through today the same, this will be my first week at under 12 cloves a day. Or 12 cigarettes or under, but I hope for the former. While the eCigs are a wonder and I am using them frequently, I do think I am cutting down on my overall nicotine intake. I do not know if I will keep moving on nicotine reduction once I have the cigs kicked. Nicotine itself is not a health concern for me right now, and I am not sure that it should be one. 

"Once I have the cigs kicked" - I was not sure I would ever seriously use those words, but I just did. Woot!

My avoidance is not so bad when I stay in contact with people that reciprocate my caring and love for them. So I am using my emergency med less. But I prefer to take it when people stress is building and neither practical methods (STFU, GTFO, etc...) nor internal coping mechanisms are cutting it. If you are familiar with autoimmune illnesses like lupus/SLE, you know that other people's bullshit can literally make us lupies physically ill by stressing us into Flare's Ville. I do not talk about that much because people can be awful, but fuck it: that is the state of things. 

For about a year, with lupus in full effect but we were still unaware that it was there: I was stressing myself into the ER or a hospital room about once a month with a combination of physical and emotional stress. I just cannot let people do that to me anymore - what if the next flare convinces my immune system that my kidneys have become enemies and should be destroyed? I had to kick the part of myself that comes from abuse and neglect and remind her that she and I do not take shit anymore.

I have cut back on my caffeine, especially Red Bull. Now, I still drink a lot of it, there was just plenty of room for improvement. That and more generally weight reduction will not be a focus until the smoking thing is done, before the end of the year I hope. 

We are starting the Medical Mystery business that is my life back up again. Hopefully we can get some answers on the stuff that is not under the umbrella of lupus/SLE or fibro.

We are going to do more meditation at home and plan on going to more open sittings and the stuff we can afford to do with the local Buddhist group we met this spring.

I am working on writing more and actually putting it out there. I am getting better at actually posting what I write when I write it. I am also making time to write whenever I have the bug instead of letting it wait 'til I get back to my desk.

So, what sort of self improvement are you engaged in now? Is it working? Thanks for stopping by, I appreciate it!

A Day Without

I was not going to write today. Today is a day without. If you are on any kind of regular medication, you know what that means. If you are on pain medication, you know exactly what I mean. I am managing: keeping as busy as I can, my mind as off of it as is possible, and simply riding it out when those fail. 


We filed taxes today, which meant talking to a stranger about being officially disabled. And of course, because I look the way I do, I get the look - of just enough socially acceptable disbelief without out and out accusing me of fraud. And I just sat there, paralyzed by all the available options of anger and ranting and pontificating stretching out before me, knowing I could touch none of them if I wanted my taxes done today. And the moment passed as quickly as it came, with no acknowledgement that it had even occurred.


Hell if pain meds are not a double edged sword. Without them, I am more alert, more bright, more capable of feeling. But with that comes not - because the thing I am most alert to, feeling the most, is pain. And not a practical, productive pain - no, a lingering, heavy, valueless pain. We put up with, even court, pain for certain reasons: athletic excellence, child birth, rights of passage. There is pain for good reason.


Chronic pain is a different animal. It eats at your psyche, even when you have it "controlled." Even then, it is a specter waiting to lash out at you the moment you forget to take your meds on schedule or, in this case, go without for a simple, single day. You are, now and forever, at the mercy of any number of factors with infinite ways of going wrong. And they do go wrong. All the time. So the only time you feel truly safe is when you have them in hand, and only until you can see the bottom of the bottle. Then this dance starts all over again: see the doc if it is that time, make sure they still feel you need what you know you need, useless insulting questions about  if you are selling your Rx, then if you get through that it is off to the pharmacy, and it has it's own little dance.


The day moves both far too slow and far too fast. It feels like swimming though rapidly hardening cement that has somehow caught an icy fire. It is an amazing sensation to move through it, but if feels as though if you stop moving you will drown in it all. But everything around you is somehow unaffected by this miasma and keeps running at normal speed... A speed completely inaccessible to you without amounts of pain the world around you could never understand. So you save that capacity for something important, like kids that need to go to the hospital or things like that. Otherwise, you muddle through, catching bits and pieces around you. What was that guy saying? You have no idea - you were trying to figure out if that pain in your back was coming from your kidneys or your sciatica. Because latter is just fucking with you, the former means you should grab your hospital bag.


So today is just a day. Today is one of those days. Tomorrow will be better, all happening as foreseen. But now you have knowledge of one of my days, one of those days. A day without.