Trying

I'm trying to get well enough to feel "normal sick" instead of wretched. Everything hurts. At least my orchid is thriving.

Hummingbird Visit

There is absolutely nothing to say about how miserable my body is. Day after day after day. *sigh*

So instead, I took a photo of one of the winged people that lives in the tree outside my front door. He buzzes me when I step out. He's a chipper fellow!

Compassion, Suffering, and Courage

"Compassion literally means to feel with, to suffer with.Everyone is capable of compassion, and yet everyone tends to avoid it because it's uncomfortable. And the avoidance produces psychic numbing -- resistance to experiencing our pain for the world and other beings." ~Joanna Macy

The above quote was on Lama Surya Das's Face book page. It's very relevant to me because I have noticed something painful in the course of being chronically ill. People turn away from my life because it causes them to feel depressed. Seeing my illness causes them suffering.

When I was caring for my terminally ill infant daughter (1993-1995), it was a rude awakening for me to see that people would rather not know her, because they considered it too painful to watch her life. Caring for my daughter Laryssa, loving her, meant accepting her exactly as she was without wishing her to be something else. Even some of the doctors in her life had problems with her condition, because they viewed her as a "non-viable life form" (their term). Anything but a human being. Everyday folk would say things like "Tsk tsk, what a waste." Seeing this, I vowed to consciously stay with suffering in others when the opportunity arose.

I once asked my precious lama, Lama  Gyatso "Why do they call this process enlightenment? It should be called endarkenment, because you can see everyone is suffering. You can't even walk on grass without killing a bug."

"Stay with this", he replied.

Even my beautiful compassionate Lama has died. He acquired hepatitis as a child in a refugee camp in India after escaping from Tibet. (He was a young boy and he witnessed most of his family being slaughtered.) I know he didn't turn away from witnessing suffering. I know he lived what he taught.

I pray I am brave enough to live what he taught.

Fun With Infections

Last week I blogged about my doctor's visit. While I was there she noticed a slight infection in my left ear. I didn't mention this in the post below, because it seemed insignificant at the time.
Yesterday I spent 2& 1/4 hours at Urgent Care. The antibiotics I had taken for one week didn't work. The infection has spread down the ear canal to my throat. It's hard for me to tell when I have bad an internal infection because I don't get fevers. My normal body temp is 96.7. Even when I've had pneumonia I don't get a fever. When I had H1N1 last spring, I didn't get a fever. Now I have antibiotic ear drops plus a stronger oral antibiotic. I had a horrible night with fever like sweats, chills and ear pounding. And nightmares! Antibiotics give me horrible nightmares! My dream life is crucial to me. It has always guided me. When my daughters were young, my dreams always warned me if they were sick, or having problems. My dreams tell me before a friend or family member dies. They also tell me when there is a pleasant surprise just around the corner. I don't like having my dreams messed with, especially by drugs.
On a positive note, I did have a good time on Friday evening. Read about it on my other blog mythicmusing.

A Visit With My Doctor

Today I went to see my doctor. She is an amazing and compassionate woman.
(To see the heartwarming story of synchronicity about how she came to be my doctor, click
here. This will take you a story posted on my other blog.)

Today's news has created another life changing challenge. My immune system has attacked yet another part of my body. The symptoms started last year, but I needed to go through a series of tests to see if it was going to be temporary, or permanent. I am so upset about the news that I am not sure how to even write about it. Now, some of the muscles in my digestive tract are paralyzed. This is not going to go away, and there aren't many options for treatment at this point.

Time for what my daughter calls "A Reality Adjustment".

I did give my doctor a paper about the Whittmore-Peterson Institute's findings on XMRV and it's possible connection to ME/CFIDS. She is going to start the process for her medical group to get patients tested for XMRV. I am so grateful to have a caring , compassionate doctor who listens.

The Art of Illness

Chained Angel 1, oil, acrylic, molding paste on canvas.

Above is painting I did in 1998/99. It's part of a diptych I did for a painting class. I did another painting along with this one, with the same theme: a chained angel. I will upload a photo of the other painting in the future.

The painting is an expression of how I feel in this body with this mess of entangled illnesses.
Blood and bone- rawness.
The wings are infinite possibilities, yet they cannot overcome the weight and immobility of the chains.
The sheer grief of knowing you will never actualize your own potential.
And so it is, while struggling with a wretched disease of the immune system.

It's been 11 years since the paintings, and I can no longer paint. My arms and upper body too weak, and the Sjogren's Syndrome has caused my eyesight to deteriorate.

All is not lost: I am struggling to blog and share. I hope to give others a voice-
a way of expressing their journey.

I am also fortunate: I recently was in a spate of griping and complaining.
"Everything hurts! My skin even hurts, my hair roots hurt. I ache."
My husband got very quiet
He looked at me very seriously... I shut up.
"You're still beautiful." he said, as he started the car.
My hero.

Neurological Problems with Intermittent Hail

It's Friday, late afternoon, in no-longer-sunny Southern California-land of San Diego. The storms have been non-stop since Tuesday. Last night and today we've had repeated episodes of peas-size hail with thunder and lightening. This morning the hail broke through my roof. As I was trying to get myself coordinated to call the roofers, property management and other HOA board members, I tripped & knocked over my portable oil heater. I landed on top of it. I've re-wounded my hip, wrist & lower back. All these areas were traumatized in 2008 when I was run over by a car (that's a story for another day!). My brain-body coordination has been challenged lately. The stress has caused my heart rhythm to be "off".

O the joy of it all!!!

I did rescue a poor kitty from the storm, and reunited her with her family today. How she knew to cry at my door, is a wonder to me! I hadn't met her before today.
Back to the afghan, couch, cats, and Vajra Guru mantra.