Tag Archives: Lupus

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, 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.

Arousal, Death an dying, Feminity, Life, Lupus, Uncategorized

It is just a piece of paper. Three simple letters.

Leave a comment

Derailed. My heart pounded loudly in my head. More loudly than it usually did. I felt a wave of nausea and suddenly faint. He watched my face I took a deep breath of my inhaler. My reaction was deep and visceral. I stared at the white 8 1/2X11 inch paper in my now shaking hand. I wanted to scream but my daughter was outside in the waiting room. It was not a surprise. We had just looked at my latest blood work. We just discussed how hard it was to for me to breathe, how my blood pressure was 102/58. How my kidney’s were dumping more fluid than I could keep down. How I was lymphocytopenic and with a high neutrophil count from the chemotherapy and steroids. How the Lupus symptoms refused to abate, the inflammatory markers were high, my vision was blurry, my joints ached, my head pounded…But I looked great. He smiled at me as that is the running joke in Lupus. You look great the sicker you are. I thought I was at peace. Yet now I felt destroyed. In my hand I held an official New York State Do No Resuscitate Order. I had held this piece of paper countless times in my career, this time it was mine. Basically it is in my best interest if my heart stops to not intervene. The disease Lupus was trying to kick my ass. My warrior body was kicking back and Robin in the middle felt caught on the battle field. And somehow this white piece of paper and three letters was flipping me upside down.

I rode home staring out the window locked in thought. I began the internal mental battle. What the fuck was I doing. A piece of paper was not going to sink me. Getting out of the car and the heat and humidity waived its miserable flag and my lungs seized. It certainly was not six hours from the last two puffs. I sucked in two more hits from my inhaler, shaking my head at myself and how many times I silently criticized patients for not following their doctor’s directions. I crawled up the two flights of stairs to my room maintaining my game face until I was alone. The floodgates opened. Sleep finally took over.

Three hours later, I awoke to the shake of a hand. “Are you ok?” I looked at my husband with tear stained eyes and muttered a perfunctory fine. He knew I wasn’t. He waited me out. An hour later he held me. I wept.

Why? Why did this stupid piece of paper unnerve me so? My throat was tight with pure raw fear. Not one solid ounce of bravery. Nothing had really changed. I was just as sick or as I was working to reframe my thoughts well five minutes before I looked at that paper as I was now. I was vital and alive. I closed my eyes and dug into my tight lungs and took a deep breath. I reached from my pilot light, to my cauldron to my heart looking for the sense of calm. The warmth that was so openly accessed Sunday night with wonderful women was fighting me. A curled into a ball and rocked and breathed a little harder and deeper. I reached for a memory and the warmth burned. My body reacted to my femininity instead of illness. I still ached. The tears still fell easily. But I started the inner plan to dismiss the power of a piece of paper. It was not my finality.

Death an dying, Funeral, Life, Sex, Uncategorized

The Plan

2 Comments

flrSurreal. The sun shone brightly. The birds pulled the grubs up from my front lawn. The mailman delivered the mail. The school bus dropped kids off at the corner. The lady who never picks up the poop after her dog walked her dog on our neighbors flowers. Life moved forward.

My husband and I walked into the funeral home. I’ve known the funeral director for years through our town and other connections related to saving lives. Now I was there to talk about my end of life. I sat across the table from my husband and he was frozen and numb. He was burying me already. I am alive. The funeral director and I exchanged war stories as easily as I exchanged the demographics of my life and my death. He was frozen and numb. I am alive. My mind scattered. I walked through the casket room. I am alive. He has me buried. I want more in my life. Anger welled within me. I picked the simple Oak casket. I am a Jew. I want a Chinese menu funeral. I watched him. We discuss a viewing that is not a viewing. We work a way to not be embalmed but to have the no view viewing. He tells the Director this matters to me. He knows what matters to me dead. But I am alive.

The shroud. My mother was very funny about it. She was not going to be buried in a farkakt shroud. She left a Ziploc bag including her panty girdle. She was buried in a simple black dress. My dad was buried in a shroud. I am looking for a white linen dress. He knew that too. I am alive.

I want some flowers, yes I know it’s not Jewish but I want them. I want stories. I have an appointment with a Unitarian minister. My sister wants a Shiva. So we will do that too. He knew that too. But I am alive. I want things now.

So as we wait to total things up. I scan through the floral book. No carnations, no gladiolas, no stands, no funeral vases, natural baskets and vases. He asks me to write it down. I am alive. I want to scream.

Prices in hand. We shake and agree to return with a deposit. This is surreal. I am alive.

We get home and he retreats again. He has me buried. I am alive. I want so much. I ache for our partnership. The human intimacy between married souls. I want life sweet and sensitive. I want life down and dirty. I still feel. I am alive.

I will not retreat. I want to scream. I am alive.

Uncategorized

Tick Tock

Leave a comment

I hear the clock ticking. My eyes are like lead weights. Red rimmed with exhaustion they blend into my red cheeks. The rash itches. I stare in the mirror and see the wolf. He is here today. My body is battling so hard. My head swims. The pain pounds behind my right eye. My vision is distorted. Thinking hurts. I hear the clock ticking.

The news is playing. A report about male fertility…a clock ticks.  A report about the Stanley Cup…a clock ticks. The last day of classes…a clock ticks. But not my clock. I hear a clock ticking.

My neck and back burns. I feel the invisible blade as it weaves its way between my ribs. It hurts to move air. My heart pounds. My legs are weak. Emptying the dishwasher results in a fine patina of sweat on my brow. I am angry. I hear a clock ticking.

I crawl back to bed. My warrior body exhausted from taking a shower. Sleep easily overtakes me. I awaken my cat curled against me. Her warmth soothes my pelvis. I stare into the dim afternoon night. I hear my clock ticking. My body fights, its spears are drawn. I want to smash the clock into smithereens. I am angry.

Nausea greets me. I can taste my morning pills. I swallow three more pills. Two for nausea and one for pain. The inhaler takes away some of the fear. My husband checks on me wanting to “DO” something. There is nothing to be done. I smile a fake reassuring smile. He hears a clock ticking.

I curl into a ball. Gently I rock to soothe myself. Confronting mortality is too much now. Just like the small child. Today I am her. The lost little girl. I cry and rock. My head pounds. My thoughts jumble. I fall asleep yet again. I hear the clock ticking.

I wake and run to the bathroom. Well crawl. The lupus is kicking hard. My warrior body is alive and fighting. My nerves are electricity. My emotions are  raw. I am angry. I am sad. I breathe the thick air and it is unfriendly. I fall into another sleep. I hear the clock ticking.

Evening comes and I force in some food. “You have to eat” my two oldest children cajole. A warm grilled cheese and a vanilla milkshake soothes the burn in my gut. I wish it would salve the ache. I am brittle. I need. I need to be selfish. I want so much more. The clock that is ticking is mine.

Death an dying, Family, Life, Rape, Sex, Uncategorized

Sanctuary

Leave a comment

Amanda Tilton Sea Cliff1

Sanctuary: a place where someone or something is protected or given shelter. I thought about this tonight as I looked at the exquisite picture of home taken by Miss Amanda Tilton.

Sanctuary: a place where someone or something is protected or given shelter. What is sanctuary?

The idea of sanctuary has been elusive to me in my lifetime. The first memory of no sanctuary was a horrid birthday party at age 5. Creepy in a mansion in Bayville, my skin crawled as the puppet man played the piano and the children played musical chairs. My memories are in black and white. Flashes come but I still shake at the incomplete memory.

Another loss of sanctuary was being a 13 yo girl at the Orthopedist with my mom. Sitting on the exam table to get my cast changed. My mom leaves the room. She had her first heart attack. Mom’s can die. She lived to have 5 more heart attacks. But limbo world I lived.

The assault on my psyche continued into college. Not only was it an assault on my psyche but my person and my space. I can still see his face, smell his cheap cologne and feel his cruelty. My apartment was no longer that sunny place. A pretext to study, became an assault. No alcohol. No drugs. Violence and Power. I called a friend who dragged me to the hospital. I returned to class as if nothing at happened. The police strongly advised me it was not worth the pain to report. My senior thesis about “Date Rape” written in 1986 received a commendation from the President’s Office at Stony Brook University. I advocate for Sexual Assault Victims. Sadly today, not much has changed on college campuses. No Sanctuary.

April 2, 2006 my feeling of safety and security flipped as completely upside down as it could. A trip to the ER to confirm a mono diagnosis due to a bad blood drawer turned into a parent’s worst nightmare. “Mrs. Dunn, Can you come speak to me across the hall. Is there someone we can call?” The line remains vivid in my head. T-Cell Leukemia. But he’s just 6 years old.To watch a child endure the vicious testing, treatment, side effects of chemotherapy. To feel ineffective as a parent to your three healthy children who needed a mom, but was too occupied in keeping my youngest alive. To watch a marriage become one of convenience…two ships that pass in the night. Sex was hall sex where we both yelled fuck you at each other. No Sanctuary

And finally the invasion of my body by a cruel and miserable hateful disease Lupus. It attacks the Sanctuary I have all along. Me. For as this disease attacks my brain and body. As it steals pieces of my life, my job, my ability to drive, my memory, my strength, the ability to breathe, alters my relationships with my friends, my family and my husband, I will not let it steal my Sanctuary. Sanctuary is not a place but it is within each and every one of us. My Sanctuary is me.

Death an dying, Life, Uncategorized

I don’t want you to go

Leave a comment

The quietude of the breaking dawn seems to drive me to wakefulness and contemplation. The gentle sound of rain falling filled the air in its own symphony. I lay there alone just lost in thought and sound. A tear silently falls from my eye. “I don’t want you to go.”  Six words that changed everything. Words more intimate than any ever spoken between us. Words spoken on another quiet rainy morning. Words so painful for him to say.  If the wall comes down, the flood will encompass the world, His world, our world. There are no reassurances to utter. No false promises to make. “I will do my best to stay.” I reach a hand out, he holds it tight and then recoils as if my touch is acid. This is all too painful. Living in limbo. Love weighted down by fear.

I think of the two Canadian mounted police officers and the two Las Vegas Police Officers and the New Jersey Firefighter who went to work and never came home. Their loved ones did not want them to go.

I think of the man in the bus coming home from a comedy show, a man driving in a car, a family in a van. Their loved ones did not want them to go.

I think of twenty eight years listening to the sound of the gun safe opening and yet another shift to begin. I say the silent prayer that I have said every time. “I do not want you to go.”

I lay thinking of the luxury I am given. A time to express those feelings and words unsaid. A luxury of choices to live the life worth living. To let go of the minutia. Yes daily tasks still occur; bills, laundry, groceries, doctor appointments. But the riches are mine for the seeking. Take advantage of gifts where you find them I remind myself.  And more tears fall.