Tag Archives: Pain

Death an dying, Emptiness, Fear, Life, Lupus, Medicine, Pain

Ivory Tower

Leave a comment

I am perched in my ivory tower overlooking downtown Mineola from my cozy hospital bed. Yes my body failed to absorb the clues and infection has dropped me flat on my back. But the infection takes no prisoners. It evokes a systemic response causing my frenemy Lupus to pevert itself. This time my joints and brain are exploding with a burning agony and a pressure that a chainsaw and a drill come to mind as a cure. Primitive but effective. I write this at a lucid moment as the most effective treatment for the brain pain is to sedate me from the world. Now I sit in an early stage of a dilaudid hug. The sedation has worn off and it returns. The doctors are again

concerned

but happy as i am looking better as who would not when the sadists grip of pain is broken albeit for a brief time. I feel wrecked as I feel torn between the bravery wall I maintain to keep the light in my family’s eyes and the utter exhaustion of the battle. But that evaluation is for another day. I feel the tug of sleep from the drug happily injected into my belly.

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..

 

 

 

Arousal, Death an dying, Feminity, Life, Uncategorized

Running on Empty

1 Comment

I am tired. Not just the tired from working hard. Not the tired of sleeping to little. Just tired. The shell I reside in is no longer maintaining its luster. I hurt. The pain pills barely touch the edge. Monday I will ask for more and stronger. It’s not fair. I am angry. My tools are dulled. My meditation is weakening. My body desperately craves relief. I fight with the stupid. The endorphin rush buys some time. I feel like a fencer. Thrust and pare. My blade powerful enough to eviscerate my wounds. Empty my soul.

What do I want? Will I get that before my last breath? Is it selfish to want? I say no. How do I get it? I grab for it. Trying to do it by living and not sounding like I am on a farewell tour. I want to live. My head is exploding and I dictate this as the waves of nausea crash over me. I want the waves of the sea. Frothy salty waves caressing my body like firm fingers. My flesh needs to warm to the touch from a caress instead of an internal firefight. My bones ache beneath weakened muscles. I want to be carried away onto soft, fluffy pillows supporting me. I turn my head and the world spins. I feel dazed and confused. I want to feel the spin of ecstasy from pure desire and fulfillment.

I close my eyes and let my meditation begin. My mind drifts to me….