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It's confirmed.  I've managed to have enough to get there for three days, then return. Betty said, "You know I'm going to worry."  Yup, I do, but, I'm going! I haven't been able to travel since 2012. I refuse to ever ride down with mom again. Never! OMG! That woman has a PhD in nagging. Oh my gosh! This year I'm riding with Wonka and his wife Blue. They have 10 year old twin boys and a girl about 13 yrs old. I call the twins the dynamic duo.

Again, there will be 7000 people. Dr. D asked a long time ago how I'll handle the noise. It's a different kind of noise. It's not a concert. It's certainly nothing like going to a super Walmart with 7000 people . For that, I'd call in sick. The person beside me won't yell Amen. No one will fall in the aisle unless they're disabled. Jumping around and screaming out doesn't mix well with PTSD.

...continue reading "Mid July Trip. Kids. Sleep. Meds."

Sunset Dancer by SUNDRIP - 2010
Sunset Dancer by SUNDRIP - 2010

As some know, this body of mine dictates if I will move or lie still. Due to a permanent nerve injury to my right arm, I can be limited in action, including holding a tea cup, a cane, paintbrush and pen. In addition, my eyes are growing dim. Strength in several areas of my upper and lower body have deteriorated. Even so, I have one other activity to discuss in which I participate.

I've mentioned my love for yoga but in private settings I've spoken more. I love contemporary and lyrical dance. I am my own dancer. I have set music that I do yoga stretches to. From there I began to move free-form. Once I realized I'd tapped into something deep in my bones I began to wear a free flowing skirt. I removed the toe from medical compression stocking and moved about joyfully. What do I enjoy? The feminine movements, turning yoga into a dance and doing so not in sweatpants and workout clothes, but in a flowing skirt with "dancers feet" (black compression hose). Sometimes my hair is down but other times the dreadlocks are in a headdress.

In this video, followed by a comment to the choreographer, you can see this style of contemporary dance and lyrical dance. ...continue reading "Artist’s Thoughts – This is me 2"

To combine art scribbled in black ink, inked in with deep blue, crimson and yellow can be sobering. To add these art pieces as a collage over the face they affect was to show that Lupus is more than what you read on a blog. It's more than the art itself. It's not pretty. What this collage says for me is: for many, Lupus isn't written so clearly on the face.

Like Girls MFMA

The digital collage is made up of the following art pieces.

In the collage called "Like Girls Do" there is a piece of writing that says in part:

Years of laughter and chit-chat captured in cards and letters with flowers and smiley faces like girls do...... half cursive, half print promises that nothing.... under a cardboard lid with edges worn and weary of holding our secrets, the last..... "

While the original art pieces are available in my Etsy shop or via PayPal, the collage is not for use or sale. But, don't worry, I'm getting there. The writing is on the back of work in progress.


Please respect the copyright and Please respect the art's wishes.


This may look familiar. I've had it forever. "The Tin Man". He also reminds me of a puppet on strings and the need for freedom. From what?

Tin Man - is still available
Tin Man - Available

From the things that wrap around pnd me. I feel tangled. I feel lost, pulled in several different directions, floating above unstable ground. MY HEART IS BROKEN and I can't seem to make it stop hurting.

Go here and get twisted around so you'll feel better and, less pain.

Go here and for this doctor's magic.

I just want to see my therapist again. I want to remember his face. I saw him in person today but he was so blurry. I couldn't see him.

...continue reading "A Month of Strings 1"


I'm still trying to come to terms with the health scare.

Patience - unavailable
Patience - unavailable

I micromanaged every move for fear it would be my last. I thought about a journal I've lost touch with, a girl who wrote about the "indignity of death." How is she? Where is she? I cleaned my room because no one should have to clean it up. I started to take out the trash but I was tired. Then I thought, if I won't be here tomorrow I should turn off the heat, ya know? I thought about doing my hair then realized it wouldn't matter. I never thought, I need to throw away this or that so no one finds it.

...continue reading "A Month of Strings 2"

It's 5:05am. I'm back in from walking outside. I took the trash out too. This is bad. I was going into full body spasms again. Big time  paranoid, head 100 mph. I took the patch off and took pain meds. I went outside and walked as fast as I could. I am steady when I'm not so medicated. I walked for only 15 min or so. There's a cop that stays at the park.

I can't do this at home unsupervised.

As I walked I could feel my body start to cramp, not seize, but cramp. Then a tiny rain drop hit my nose. Ah, there's a big PART of the problem, the barometric pressure changed. Part of me wishes it would never rain again. But then we'd miss the smell of water on earth. We'd miss how soft it can land on our noses. :-).

I didn't fail. I didn't. I just need more help than I have with ridding my body of the substance that won't even let me walk down the stairs safely.

...continue reading "I’m not a failure – Opiate Withdrawal"

I was betrayed.
I did exactly as I was told. I was told that if I take opiates exactly as I was told, I would be fine. I'm not fine!

I did not abuse my medication. I did not take more than I was supposed to take. As a matter of fact I was afraid of the medication, because I did not want to be an addict or one with a body dependent on the medication. But here I am 4 years later and I have been hospitalized because of the seizures and the sheer force of my body's refusal to accept that I will not continue to put opiates in it.

...continue reading "Opiate withdrawal from medical treatment"

Ariel knew d1 They just aren't, some issues are so frightening that even in the line of the sun they are still pitch black, still frightening.

When I painted this child, I did so with full knowledge that she may not sell. I have a problem though, I can't paint gentle art if that's not what's inside. So I did what I do. I painted what I know.

Little Ariel knew it would rain. How does a person with Fibromyalgia and /or Lupus know it'll rain even without turning on the weather report? Our bones tell us. The pain level shoots up high. Our eye sight is affected. Our fingers, lips and toes get cold. The pain level shoots up so high and so fast that it'll double the body over. What's interesting to me is that I'm caught off guard every time.

I hold my side. I'm bending down, seconds from loosing lunch, but it hasn't clicked. I don't understand what's happening to my body. When I try to get to the car I see its sprinkling, raining or even light snow. Now it makes sense. Finally I realize the weather system has changed  and that has affected my pain, my complexion, fingers, lips, eyes and my ability to think rationally. It's as if I've been sucked in and can't see my way out....  but not so fast. I can see my way out. ...continue reading "Some Things Aren’t Easy to Look At"

My emotions are raw.

UPDATE - A positive update hasn't been written yet. Please remember that my emotions are all over the place as I come off of Percocet 10-325mg for a legitimate health issue. I'm spent.

This is true - he said that fms is a chemical response. That is a true statement. FMS is a chemical embalance. I have known that for a good long time but how dare I say it with just a city college education? Doctors don't listen to each other let alone me.

Fear causes a chemical response. Depression, joy, arousal, pain. The body has to process these chemicals correctly or you are screwed. That's a very simplistic way to explain it. When he said it to me I about fell over because I've believed it for a long time. PTSD can jack up your adrenal system something fierce because of the flood of adrenaline all the time. The body was never meant to be abused, especially by its own chemical make up and system of nerves.  ...continue reading "My emotions are raw – POSITIVE UPDATE"


Look, things have been going down hill for awhile. I've felt like my last breath is only half a breath away. Sadly, each day is worse than the last, yet I'm still here. I don't want to be.

I went to see a new doctor today, a guy who ranks in the top 500 in the state. He says he can help me. I didn't say anything. He told me I need to do physical therapy. He said you need to lose 130 pounds. I laughed out loud, apologized then said, please, go on. He said I want you to work with our nutritionist and to join a gym. He said, it'll only cost you $10 a month.

It's just ten dollars.
...continue reading "Sixty. Thirty. Ten."

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