All posts by Robin

I am a 50 year old married mother of four incredible children. I am an author, patient advocate, pet owner and friend. And sadly, I am disabled from the cruel autoimmune disease Lupus. Facing a future with no more treatment possibilities, this blog is dedicated to that journey.
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Blue eyed fear

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I am sitting in a doctor’s office. That is far from new for me. But I am not the patient. I am the cheerleader. I am the supporter. The patient, my support system, the love of my life is wary. His eyes are dull. He is fearless every day, today he is afraid. I cannot fix it. This is new to him, the prep, the wait, the repeated forms and questions. The IM antibiotics and more waiting. The procedure still to come. The stoicism. I ask him if he wants me to be there. A cock of the head and a meek OK. His look confused as why would I want to do that? I smile the biggest smile I have. I love him. This is so easy for me. I am a caregiver. It is natural, all mushy hugs. I stifle my fears, my illness and my pain to be here. Narcotics help. But truly, Love makes that easy. Why is it so hard for him to understand? We laugh at the medical assistant, her warm, effervescent personality a scene from All in the Family. We wait some more. And We wait some more. I am so used to this. He becomes more uneasy. I notice it takes forever to read the same page in the magazine. I place a reassuring hand on his knee. I make no promises that all will be OK. We both know that remains an unknown at this point.

I realize that years of emotional wariness and upbringing has taken its toll. He does not do hearts and flowers. He does brass tacks. Hard and sharp. We wait some more.

Death an dying, Fear, Life, Pain, Soul, Uncategorized, Yearning

Pondering

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I sit in the peaceful quiet. A cricket rubs it legs together making a late August appearance. My emotions begin to flicker free from the darkness. An uneasy nervous clench ripples through my gut. I think about my next therapy session. I have entered into a contract with myself to live a life worth living. An exploration to live a more pleasurable life. A more peaceful life. A life to smooth my roughened edges. A life for me. I realize every time I see one of my physicians I begin to feel like I am walking on a tightrope. My emotions rise to the surface like a bubble in a boiling cauldron. I focus my thoughts on my next session. It is painful to take the risks to sooth one’s soul. I will talk about those fears. For to be open to pleasure you need to be open to pain.

Magic words at every doctor’s appointments. “How do you feel?” I used to make piles. Each system I could identify in robotic fashion. Every exam, I could shed myself into a gown comfortably numb. Today I can’t answer with any clarity. The set of safe, rote words are no longer existent. The answer in truth is a muddy I don’t know.

Why is this happening? Where are my answers? Why do my fears take my attention? I sort through. My health is frankly lousy. My blood vessels are like old city water mains dry and crusty. The pain requires work to be controlled. Instead of stop, drop, roll it has become stop, writhe, meditate. The prognosis grows ever more lousy. My ever on brain has now networked to balance 5 other lives other than my own. Torn in multiple directions my thoughts run. They are a violent frenzy. How do I feel? And there it becomes clear. What do I want? What my mind and body crave? What do I need? How do I feel? How life is one thing and in a heartbeat becomes something else. How my desire for peaceful relief brings all of me out of the shadows. Where this story will go I do not know.

Emptiness, Family, Fear, Life, Lupus, Medicine, Pain, Police, Rape, Soul, War

Restlessness

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I sit quietly alone. My eyes close and I begin a meditation for my day. I cannot quell the mental interruptions. An air of restlessness fills me. I breathe. Focus on my breathing, but I cannot. What is filling me with this uneasiness? Again I breathe. My lungs ache. My soul aches. My head pounds. My heart aches. What is it? The seat of my soul screams in pain.

I open my eyes and stare into space. I feel the world. I cannot shake these feelings. Ferguson, Staten Island, Texas, all deaths at the hands of police. 28 years a cop’s wife flies into perspective. I am afraid for him. It has become open season on police. He works as a leader of a group of men who respond when the police call for help. He deals with the craziest, angriest, and most dangerous. He has stood on the remains of the world trade center, has crawled into crushed cars to calm and rescue the injured and trapped, he has forced his way into homes of the deranged threatening to take their own lives and those of others. The list goes on and now I am afraid because it is again politically correct to hate cops. I am afraid.

Two little girls are kidnaped in a small town in NY. They live a simple life. And in a heartbeat it will never be the same. Two monsters take them into a world of darkness by sexually assaulting them. I have two daughters. I am afraid. College campuses catch the news media as sexual assault complaints rise. The debate about morning after remorse vs criminal act continues. I am afraid. Nothing has changed since I was in school. My thesis about the dirty little secret of date rape is as pertinent today as it was then. I close my eyes and feel the evil touch of a man who I considered a friend. I still cannot hear “When doves cry” without wanting to vomit. I have two daughters and I am afraid.

The world is such as small place. I am trained as a research biologist. Ebola and an entire group of other diseases are just a plane ride or gene mutation away from becoming a problem here. I am afraid. I have four children. The keepers of the science have made deadly mistakes in the care of the diseases they study. By the grace of god we have stayed safe. Carelessness will be our undoing as hours are long and the caretakers are reduced in budget fights. I am afraid.

Evil continues to fight in this world. Israel vs. Hamas, Tribal wars in Africa.  Groups so passionate in their beliefs that the murder of children is tolerated. I have four children. I am afraid.

Watch any news show and you see ignorance. People who believe only what they hear. Studies show the more humans hear something, they take it on as their truths. Media obstructs truths. War is ugly, people die. It is not a sanitary process. People fail to follow lawful orders of police. Life is not a law and order episode. There are consequences. Children are disrespectful of teachers and teachers are unable to discipline. Parents rule the schools. Learning disappears. I am afraid.

The fall season is soon upon us. School begins. Life continues its circle. The feeling in my gut begins to swallow me. I feel hollow. My heart beats fast in my chest. My mind races. Breathe. Slow down, Concentrate. Breathe. Fear. Breathe. Why . Hush. My body aches so. I close my eyes. I breathe. I am afraid. 

 

Death an dying, Life, Lupus, Pain, Soul

Constant Reminders

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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.

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QUOTE OF THE DAY: Tea

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dshewey's avatarfood for the joybody

TEA

“At the Tea Garden”

My friend and I mull over the teas
displayed in square jars
with beveled glass labeled by type.
Each name seems part of a haiku:
“After the Snow Sprouting.” “Moon Palace.”
“Mist Over the Gorges.”
I’m drawn to green teas
with unoxidized leaves that don’t wither,
hold their grassy fragrance
like willow under snow in winter.

The proprietor offers real china for the Chinese tea.
Animal bones, fine ground, give whiteness,
translucency and strength
to the porcelain that appears delicate,
resists chipping.
The rim of the cup is warm and thin.

My friend’s lips are plush: her lovely
mouth opens to give advice I ask for.
We talk about memory of threshold events,
like a first kiss or a poem published.
She can’t remember…

I tell her about my brother-in-law’s
chemotherapy—his third bout of cancer.
He wants his family to put a pinch
of his…

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Pain

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The little white pill is so appealing. My bones burn and ache today. My face itches with a rash. My Lupus is rearing its head. It is vicious. It takes no prisoners. I swallow the pill and follow it with a cold drink. The water stings as it drips down my throat. I laugh to myself as my blood work is the best it has been in 5 years. My recent cat scan is a different story. It is so pretty. My blood vessels sparkle on the film. Calcification. My blood vessels are hard and brittle. A time bomb waiting to explode. One piece breaks free and my time on earth ends. One more reminder that the clock is ticking. It hurts. The wave of nausea now comes from fear. Fear of the pain?

The pain is also a pain deep in my heart. I sat beside my child. Mom I read that all that it takes to keep the Lupus away is activity. Keep active. I smile, my child is trying. My heart burns as I wish it was so simple. I thank my child for the advice. I resist the temptation to educate as my child needs to believe in an easy solution. I sigh and suppress the tear with a wipe of my hand. This is pain. A pain no drug will fix. My children are suffering. Why does it have to be so difficult for them? They are watching mom ebb away. They need me and I need to live. It is harder. I am tired and weary. I hold on to the beauty and pleasure that life brings. I try to stem the annoyances generated by my children’s inability to lift a finger or pick up after themselves. They need mom to appear normal. These tasks once effortless are now monumental. I continue to play the hand that is dealt. My deck appears to be short a card. The game seems rigged. The pain is searing,

My eyes are so heavy. My head aches. The ligaments and muscles and tendons cannot bear the touch. I force myself to my feet. I must keep moving. I run from the pain.
I

 

Death an dying, Life, Soul, Yearning

Boundaries

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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

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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.

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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..