Tag Archives: Soul

Death an dying, Life, Lupus, Pain, Soul

Constant Reminders

Leave a comment

I woke up shaking and cold. Opening my eyes was a difficult task. The first deep breath of the burns my lungs. Turning over I felt a searing ache across my hips and down my legs. I knew before I saw my face. There I staring in the mirror, the ugly red bumpy butterfly is visible. I rub my face in with the steroid cream and notice my chest too has erupted. It gets a share of cream. So damn sexy.

I return from the bathroom and sit on my bead again. I close my eyes and forced another deep breath. I need to put this in its place. I must send it into the corner. A corner where physical pain sits on a stool getting its grove on. A corner far away from me. I stretch my neck and my head spins. Feels like I’m drunk with no benefit of booze. Shit. This sucks. Force it away. An invasive thought crosses into my mind. “Go back in the corner.” I summon up my inner voice and yell. I pay attention to my breathing. In and out the air moves. My mind begins to clear. Like the red sea it parts into two sides. The pain is screaming, the lupus is active. I cannot soothe that without the little white pill.

The emotional. That is where I can ignite my pilot light. I breathe in and out again. I need to remember to breathe. I focus on me and gently rock. I begin to feel warmer. My mind just focuses on the sound of my breathing. I focus on me, my body and mind. I ignore the sounds around me. I listen to the sound of my breath and placing a hand on my chest feel the beat of my heart. I let myself feel my arms around me, an embrace from within. A tear drops from my eye. Wet and salty it trails down my cheek. I slow the rock and open my eyes. My pain is still there but I feel lighter and emotionally less burdened.

Death an dying, Life, Soul, Yearning

Boundaries

Leave a comment

How we answer life’s questions defines us all. What are your boundaries? What makes you uncomfortable? How did you get there? What choices do you make?

I sat with two of my children tonight. What is a boundary for one is free and easy for another. Interesting since they grew up in the same home. I find this true in adults too. A group of people all from the same place have such divergent plains. As we age do your boundaries change. Where do you go.

As my time clock begins to tick more loudly my boundaries are growing by leaps. Is it the fear of nothing to lose or is it a desire to feel new? What do I want has begun to drive me. It is not monetary. It is emotional. It is shocking even to me. As i peel back my layers it is amazing and to some daring. To me it is as vital as the air I breathe. Who am I? Now that appears to have easy answers especially to a woman who as some would say was always blunt and clear. That is true for me to answer for others. It is not so easy when I have to answer for me.

I am beginning work with two incredible souls. One is helping me find my words for me. The permissions to explore my boundaries. The other is there to help me push those boundaries and let all the pain go. Fears are supported and acknowledged and eventually placed on a bench beside me. They are part of me. Each session leaves me physically spent as there are not reserves in my tank. But each session also leaves me lighter and more at peace. It leaves me more alert and creative despite my physical brain failing. And they leave me more alive in my failing body. The tears that often coat my face wash away the heaviness I have carried for years. They soften the hard edges. They help me learn to live with all my pieces.

I write this to share my lessons. I am learning to face my fears and hear my inner voice. I appreciate the pleasures the world has for me. I am no longer afraid of my boundaries. Are you?

Death an dying, Emptiness, Feminity, Life, Lupus, Pain, Soul, Yearning

Phase

Leave a comment

IMG_0741

The moon is in its glorious fullness. Bright and radiant beginning a new quest in the cosmos. What phase am I in. I am oscillating. I am in a fearful place. I do not expose this to many because it is a cold and lonely place. But I have learned when I share these fears it lifts a bit of my veil of darkness.

I am now wracked by a constant deep dull ache in my side. It is complicated by rhythmic excruciating pain that comes in waves. Add nausea and diarrhea plus chills and sweats. A stone in my kidney and another in the IVJ probably will beckon a more invasive surgical procedure on the horizon/ A day in the life of my physical being. Sadly this leaves me un-phased. The further physical nightmare continues with the incidental pictures on the scans that shows the effect of the lupus and the steroids causing osteoporosis, and the frightening calcification of the vessels in my pelvis and aorta that bodes a miserable ordeal in my future. A time bomb ready to explode, Technicolor on a scan. I wonder why something deadly is so pretty. It is starting to phase me.

But the emotional journey I am on. This so phases me. I am working very hard to find a place of peace to live the rest of my life however long I have. This is more painful than any physical pain I have endured and continue to endure. In the depths of a session working with my therapist to discover life in my body three words turned my world upside down. “I have you” murmured by him as I let go of some emotional ache ripped open a huge gaping emotional wound and started a stream of tears that as of today flow like a sparkling steam down my cheeks. Is that what I want? A resounding yes in the seat of my soul. An intimacy that defies all other pleasures. A need so deep that it explodes through my head. Add a conversation with my mate as I go through yet one more ordeal. .”This does not phase me anymore.” An indifference that breeds such a feeling of disgust and hatred yet I generate forgiveness for that is the only right thing. I want “I have you.”  A phase of my life so yearning that it is unbearable. The emotional need generated by the physical failure of my body? No the emotional need of being a woman alive.

A phase I enter as a woman who deserves the “I want more.” A hand to hold, a touch to my cheek, a hand moving a loose strand of hair behind my ear, a gentle wipe of a tear, a set of arms around me, a gentle pain relieving touch, an intimate touch is what I need, what I want to make it to tomorrow. That phases me. The missing link I feel as my body tries to sort out the misery.

As the Lupus gets mean, and she is. I can fight the physical. That constant voice in my head running my case thanks to a wonderful man’s help is being sent to the bar for a couple of cocktails. But the emotional, that is the tough phase to deal with. To let go is the equivalent of nirvana. The joy of the intimacy of release for my peace is the phase I try to live in. To aspire for to be alive as my body slowly dies.

Death an dying, Emptiness, Family, Life, Pain, Soul, Yearning

Living well while dying or just plain dying well sucks.

1 Comment

I graduated today. Not in the sense that most people do. I graduated to narcotics. I looked at the CVS bottle, now in the geriatric bottle because my hands cannot handle the twist top filled with the little white pills that fill the news. I sit here and cry another bucket of tears as I pop one into my hand and swallow. I pray it works to take away the pain, I am ready for some relief in my life.

Relief, Ha what a concept. I am tired. The armor I have carried and displayed so long is pock marked with the hell of the war. The disease, I will not even give it the notoriety of its name is wining. Not only is it debilitating me further, today I realized it claimed the life of those I keep dear. In fact they do not read what I write, nor ask or bother with how I feel. Oh yes a proforma are you ok. The fucking answer is no. I hate this and I want to scream and cry and no one in my fucking family especially the man I am married to for 25 years, the man who I have loved forever, has the balls to let me cry. Somehow the intensity that falls out of me is flowing as the clocks seems to be ticking louder scares him to death.It scares me too. I am ready. But the reservoir I need at home is dry and empty. Their fear precludes my needs. I yearn for so much. I can no longer do or fix. Someone else must sign up.

Today, I arranged a lunch date with a friend. I know it was probably a goodbye. We ate a meal and talked silly stuff. We talked about our families. We talked about my Chinese menu,  Jewish funeral planning. My friend is a man. I consider him a dear friend. FRIEND.  Well lock me away in fort Knox. And all it was, was somehow in my heart a so long. A childish temper tantrum by an offspring totally ripped wide the gaping hole of emptiness In my heart. The cavern of emptiness is larger than the grand canyon which sadly will not be discovered by any of those that cause the most pain because they show no interest in my writings. My secrets that somehow the world shares but them..

Two visits to doctors reinforced the time bomb ticking below the surface. The painfully low blood pressure, the pain exploding in my head, my vision blurred, the increased right sided loss of balance demonstrating more brain destruction and potentially another stroke. They won’t subject me to another MRI. No point. The Cryptococcus titers showing positive still..where is it lurking. The 16 hour sleep cycle, the fluid in my lungs . And the list went on. And he promised that I would be given the pain meds that I need. That the worry about addiction is moot. Its only going to get worse.  All I wanted to be held and to cry. So I sit here alone in tears, empty and broken. Reality is hard today.

So this desire to live a life worth living is my wish. It is getting oh so harder. It is especially alone at home. The love and support I receive from those outside my microcosm is so wonderful. My friends in my life are my wellspring eternal. Gifts from my world. That helps me stand. I pray for them daily as without them I would fall. So as I hope for some relief. I pray for some peace..