In a comment to a reader I began listing off more reasons why it feels pointless to trust any doctor or treatment.
She said "I’m naked when I try to shed the blanket for more than a few minutes."
I understand that. I feel Naked. I feel Exposed. I feel Defenseless. I throw myself at the mercy of doctors who do not oblige me to the proper degree.
My response to her comment got me to thinking. When I went to a doctor I went stripped, exhausted, desperate. I was willing to do whatever they told me to do. Again and again I ran into abusive doctors or flat out incompetent ones. I took crap off people for one reason only - a means to an end. I needed help. I could not control the pain. I handed myself over because I felt I could not continue living at the rate I was going.
What has occurred to me here is that while feeling defeated I gave much of my power and voice to clowns. Each time they failed in an epic way, so too the will to assert myself. I floundered from promise to treatment doing exactly what I've spent 20 years in therapy learning not to do. Do not give away my voice or power. ...continue reading "I know what’s different. I’m at the helm."
What's wrong with you?
I'm angry. Yup, I guessed that.
I'm wearing it like a blanket that I refuse to remove. What are you wearing under the blanket?
Skill. Love. Motivation. Ok, I wasn't expecting those things. I thought you were going to say exhaustion, vulnerability, etc.
If you ask me, those are the reasons I have chosen to keep the blanket on. Is it worth it?
My goodness, I'm so angry, and this depression feels like a garrote. I want to get up and eat dinner. I'd like a shower. What's stopping you?
I want to run my business and post art. I want to have my cat near instead of pushing her away. What's stopping you?
Listen, Faith, listen. Let's think about the last year, no, we're going back to the last 3 years. In the last 3 years you've had more physical pain than your mother put you through in the 20 years you lived with her. That is not an exaggeration. You have broken teeth from biting down so hard to endure what was happening to your body. During pain attacks your body responded in ways that the body responds when it is writhing. In those situations you've destroyed bedding, vomited on the cat and tore at your clothing as you screamed. You went mad Faith, like anyone else would. Do you understand that?
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.
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.
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.
The digital collage is made up of the following art pieces.
Bruised Reed – Redbubble
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?
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.
I'm still trying to come to terms with the health scare.
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.
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.
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.
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"