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I'm having a quiet night here at home. It's me, my sewing box and a few black and white movies. I'm still exhausted but my anxiety is better. Friday is a scheduled hospitalization. It's not an ambulance type of situation.

I talked to Dr. D over the phone but I don't remember what we talked about. I may not remember what we talked about but I remember it was good to hear his voice. Several sisters called but I don't know what we talked about. They called at peak medication time. I was sauced.

I'm just going to relax as much as possible and try to get my head back in order.

1/16/17 - 8:13pmEST


A short hospital stay was needed. I'm home recovering but I'm not to go anywhere. I was grateful that 3 from my care team responded after hours, including over the week end. They got me all squared away .... not to mention super drugged.

I said I wouldn't take narcotics unless its absolutely necessary. Well, it was absolutely necessary. Several days of going through that crap was enough! I'm still very tired, still not keeping anything down and still feel like crap but I don't hurt nearly as badly as I did. I'm down to a 7, which I hardly ever see even with this much stuff in my system.

I'm sleeping a lot, at odd hours as usual, but its good sleep. The elders from the Hall have been very helpful, so have the sisters.

Here's another My Face My Art piece created here in bed. She's wearing Nesting Place 2 on the left side of the screen and Reed 1 on the right.  Also to the right of the screen there's a tiny bit of texture from the small drawing New Dimensions.

Back to sleep I go. I talk to Dr. D on the phone tomorrow afternoon. He was one on my care team that responded after hours.



I talked to Snow over the phone while my pain level rose beyond bearing. She asked why it's so bad when its warm outside..... It keeps raining, the temperature is fluctuating.

I heard meaning behind her words that she didn't say. She asked why my pain is so high when it's warm. I heard her say, you've had a lot of symptoms since the updated diagnosis. It's warm outside, you don't have a justifiable reason to be in pain. She didn't say that, not at all.

Everything in my body misfired, including the connectors in my brain.

...continue reading "on Lupus and Termites"


Other than the fact that the character in the film killed someone, this is the closest visual I've seen of the disorder Dissociative Identity Disorder aka Multiple Personality Disorder. Several years ago I brought this in to my therapist to see. He felt also that it's very, very close to the disorder.

Look at how each person behaves and ask yourself, how much of this has shown up on this blog? Everything from the little girl to the paranoia to the anger and fear. There's embarrassment for the chaos and a strong anxious force that drives us. This shows my experience very well .... except for the fact that he's in the hospital because he killed someone.



...continue reading "DID Inside, a short film"

This is an entry that has me giggling before I even get it started. It appears that a person desires limiting her use of the F-bomb. Let me tell you this, not five years ago I used the f-bomb like a comma. If I was angry it was even worse. It would go something to this affect: "Do you want some f-bomb milk with those f-bomb cookies?" I mean to tell you, if f-bombs could destroy the earth, we'd have zombies and the Apocalypse by means of my mouth. I mean I was droppin' 'em. I spoke 'curse' like it was my mother tongue.

when i finally snap - Facebook When I decided I wanted to live as one of Jehovah's Witnesses it meant significant changes. I was worried I couldn't do it. I was worried about my mouth, my tobacco addiction, use of my middle digit and my life style. Who knew I'd love being a JW so much? Even so, I'm still a work in progress. Slowly but surely I tackled some issues. This entry deals with cleaning up my mouth.

Oh that language of mine.
I truly wanted to clean up my language but I needed help. I asked my best friend of 16 years not to curse around me. Yup, sure did. The goal and change was my own, not hers, so I was appreciative when she gifted me the request. And yes, she slipped up, but I didn't wag my finger.

...continue reading "F-bomb and Cookies"

There are two people in my medical team who feel I'd do better with a small dog as a service animal. For several months this has been on my mind. Weighing my options, assessing my needs and considering my financial situation, I've decided against getting a dog.

I'm a dog person. I love their noses and their wagging tails. I love their fierce loyalty and the look they give you with those big browns. They celebrate every time you come home. They're constantly happy and are all around good company. I'm first and foremost a dog person, but honestly, I'm not in the situation to get one.

What's the next best thing? A Maine Coon. In the state of Indiana, a service animal can be a cat or a dog. I've heard of doctors writing letters to a landlord expressing the therapeutic value of birds. My next cat will hold the same legally protected status as a service animal. No pet fees, no extra charge on rent.

I think a lot about the qualities of my Maine Coon mix and see the best of both worlds. Last night's hell solidified the decision not to get a dog but to get an MC that sleeps above my head and purrs in my ear as I try to survive the night. At one point she moved to my side and snuggled close. It did hurt, but so did everything else. It was soothing and helped me cope better with the knowledge I wasn't alone.

I am terrified of the pain my body goes through. It'll spasm hard for maybe 30 seconds then gradually let go. It sometimes partially spasms as it lets go then it'll totally release only to restart 5 or 6 minutes later. The muscles quiver and spam. I try to remember to breathe with my diaphragm. I was instructed to inhale and fill my stomach, hold just a few seconds then slowly exhale. I've been fortunate in having so much physical therapy bc I've taken bits and pieces to add to what is now a wealth of coping skills for physical pain. Despite being terrified, I have a sense of control by knowing and using coping skills specific to my needs.  ...continue reading "Dogs, cats, frogs. Working with what I’ve got."

I went to bed around 7am Tuesday morning and woke at 12 noon to meet with Betty. I took a quick lavender shower and was out the door. She was tired, I was tired but we got our stuff done and came home.

Within min of walking in the door my body started this horrible spasming. Every muscle, groin area included, tightened, let go, tightened and let go. I'd compare it to the strong contractions of child-birth only for hours upon hours and the contraction going from the shoulders to the toes. My toes spasmed a locked. I'd maneuver them straight but a few minutes later they'd do it again.

I realized I was in trouble bc it wasn't stopping. Charlie horse - like spasms in my thighs, squeezing in my calves, my fingers curled and locked and the muscles in my lower back rippled with spasms - simultaneously. I was writhing and needed a human voice so I called an elder from the Kingdom Hall who was very nice. I talked to him and his wife for less than 10 min bc I was so tired.

People don't always say the right thing. He told me that he knows my Lupus will get a lot worse. He said, its attacking your body. I said yes. We talked about how my current understanding is that the RSD is linked to my Lupus. Strangely enough, answering questions and talking for about 10 min helped. Despite the 'it's going to get worse' statement to which my mind replied, I won't live, it was a helpful phone call. I slept shortly after the phone call.

Around 11:30pm a call came in from Seattle from a girl I've known since 2000. She's come to visit me twice :-). I was drunk with exhaustion so I only managed a few minutes of chat. I love that girl.

The day was difficult but with the help of friends I got through it in one piece. I realized early on that I needed to hear a human voice to help me through this. Right now I'm spent and have a headache but I feel confident I can keep going.

My best furry friend, Mary Jane, snuggled close to my ear and purred.

I'm going to go back to sleep.


01/04/17 - 4:10amEST

Taste. My taste changes quite often. Right now I can't stand the taste of ice cream, at all. Before that it was peppermint. I suddenly couldn't stand the taste. It took about a month before I could eat it again. It's going on 2 months since my taste for ice cream has changed. It's crazy.

I wonder, too, is my current depression caused by RSD or is the depression bc of constant symptoms from RSD? I don't know, but I feel so low and like I just don't care anymore. I'm not suicidal. I don't mean that, but it's like I just don't feel connected to tasks. There's no flame, no drive. I'm just going through the motions.

...continue reading "Taste. Depression. Anger. Intensity."

I don't celebrate New Year's Eve or day, but many do and want to write about positive beginnings, letting go and making peace. That's fine. I take no issue with entries about goals and adjusting to change; but you mustn't expect that here.

2016 was horrific. I've not seen so much destruction of land, property and life shoved into one year and plastered on every media source possible. From across the globe to my front door there's been tragedy after tragedy. If earthquakes, mud slides, massive fires and flooding wasn't enough, there was a brutal election to sit through. As if bombs going off, children washing ashore and gigantic sink holes weren't disturbing enough, there was a mind bending act of terrorism in putting Donald Trump in office. What is wrong with you? Trump is an arrogant pig with a Twitter account, and zero tolerance for anyone but himself. He is an animal. He's the Adolf Hitler of the United States.

...continue reading "@TheReal 2016"

Jolie B Studios
Used with permission by Jolie Buchanan

I  and another person supporting the family with a recent tragedy have found ourselves overwhelmed with physical symptoms.  We are the only 2 with Lupus, the other 2 are relatively healthy. Just like them, we kept going and going. I could feel my body's need to stop but I didn't entirely listen.

Right now my vision is so poor that the screen is a blur of white and black. That happens when my stress level is up as well as my pain level. My left side spasms then lets go, violently. I can't say support was the problem bc I always do too much. Why?

I'm often on autopilot, driven but not connected, walking just 5 inches off the ground. I 'Energizer Bunny' things then look back and think, I should have spread that out. It's my norm to keep going as if there's a penalty of death if I stop short of perfection. No less than a year ago my body said that business as usual has to stop. How?

...continue reading "still floating"

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