Setback

        Sometime last week (Thursday night?) I awoke to horrific abdominal pain..... so much pain that I could not tell where it was coming from.  I soon found out that I had an ulcerative erosion in the upper intestine. Two years ago, after several tests, it was discovered that my entire stomach lining was eroded: erosive gastritis. My Dr. said that it could possibly be that my immune system was attacking my stomach lining. (To me, this was obvious because of my prior diagnoses of interstitial cystitis and ulcerative colitis.)
       To further complicate matters, the required diet for this crisis is clear  liquids. This diet does nothing to address my functional hypoglycemia: chronic low blood sugar. With low blood sugar, you can't simply eat sugar. You have to eat things that metabolize slowly, like whole grains and proteins. When your blood sugar is in the 60's, or lower, you basically can't function. It's like putting your computer in "safe mode". You are very limited in cognition, perception and energy.  So I did the only thing I could do:   I just laid around our 750 square-foot home in a fog. Occasionally I noticed cobwebs and dust bunnies that I  do not have the energy to clean. Maybe I should name them...
     Somewhere in the lost time and fog of doing nothing, I have sprained my left thumb. I am starting to eat whole foods today. I hope this episode ends soon.

Infinity Chained

This is another of my paintings: Chained Angel II. I painted  it at the same time I painted Chained Angel I, below . I painted them side-by-side, using the same color palette  ( I wrote a little about Chained Angel I earlier on this blog : The Art of Illness.)
       Chained Angel II has the horse head nebula as her dress, and deep space as her wings. Yet- she is enchained deep in a cavern inside the Earth.  How can space and infinity be chained??? For me, this is a description of living with ME/CFS.
         Having a mind that wants to explore  the world around me and a body that can't even make it to the parking lot is a paradox. Embodying  a heart that desires interaction with other cultures & other peoples in a body that is chronically exhausted is.....well... frustrating.
         A case in point is this past Friday. I was not doing well already, but my daughter & her boyfriend were taking us to lunch to celebrate Father's Day. This is a rare occaisions due to everyone's work schedules, and my health. We all went, and we all had a nice time, though I couldn't eat. 
               Later that night was the first get together for the newly re-formed Pacific Paranormal Investigations. We all love being together. The chemistry feeds our souls. My husband & I spent 6 wonderful hours with these fascinationg and caring people around a fire. We all talked about things we are passionate about.  By yesterday , late morning,  I had crashed. Complete adrenal exhaustion. Everything hurts. No more that 2 hours sleep. My kidneys are inflamed, my joints are inflamed, it hurts to breathe, my brain is foggy..... I could go on, but I won't. I am in a complete breakdown.  I only spent time with people I love, sitting only (no dancing, walking, moving around)..... and yet the cost was very high. I'm still paying.

Another Urgent Care Day

I have been groggy, dizzy, head-achy and have blood draining out my right ear. My body temp is usually 96.7. Today it's 98.2. Diagnosis: Viral Labyrinthitis.... a virus is attacking my right inner ear. What makes this even more distressing is the  fact that it could become a permanent condition. This is the way the other permanent conditions started for me. Now I have to wait and see.
Oh, and we're still having quakes, both aftershocks from the 7.2 Easter quake, and new ones from other fault lines. Quakes also affect my inner ear.

*sigh*
I think I'll go lay down....

UPDATE: we had 5.9 quake approximately 55 miles from our home, after I posted this.

Tending The Body

   The amount time I spend taking care my body leaves me with very little time to do much else. If I am not tending the body, I am recovering from the exertion of having tended it. There are days were I wonder if this is to be, in the end, the total of my life. I know there are days where I am asked "What did you do today?" and my answer is "I took care of my body".

    "She spent the whole of her life tending to her body", a statement I imagine someone could say after I die. That doesn't appear to be a productive way to live. I have no choice in the matter. The loudest voice in my life is the cry of my body and its systemic complications.

    To find meaning in in this condition, I turned to spirituality. There arose yet another struggle: modern spirituality is NOT body based! You are supposed to be striving for heaven, or Nirvana, and you are NOT allowed to bring your body with you!  You end up, on this non-body-based journey, looking everywhere outside yourself to find the kingdom of heaven, or god, or enlightenment, or samadhi.  The "new age" philosophies often regard illness and death as a complete failure. "You don't really want to be well or you would be", says one well known "new age" healer. Or a well meaning "spiritual" friend who says "Why did you give yourself this illness?" Then there's the "spiritual counselor" who asks "What is the pay off for remaining sick?" The sad thing here is the "spiritual persons" just mentioned have completely immersed themselves in delusional thinking. True spirituality includes the very conditions you are in right now. You cannot escape your body, and achieve spiritual wholeness. Your body is your vehicle. That being the case , we need to work with spiritual principles that include our body, as it is. Each of us who bears an illness such as this has a right to demand a body-based philosophy from their spirituality. To believe any other way does not contribute to wholeness.
 To tend the body IS to tend the soul, the spirit, the mind-stream.

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.