Category Archives: Lupus

Death an dying, Fear, Life, Lupus, Medicine

Threshold

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Yesterday was an event. I woke up miserable after a very restless night. Headache skyrocketed. Sedated that only worked for 3 hours. First threshold. Let’s try new med. Injected and within 30 seconds my heart seized. Not the seize of a set of lips on your throat seize but a life threatening one. Heart rate dropped to 60. My normal is 80. Respirations 8. My normal is 12-20. Bliod pressure 201/107. Not a typo. My head quelled. My heart felt like it was dying. Treatment oxygen, can’t have morphine, can’t have nitrates. Lower BP.was all I heard. Rapid response called. Unable to speak or move. Soaked with sweat. Threshold met.

Today with my oxygen, I watched the sunrise from my perch in my ivory tower. The blessings and peace for another day. The reminder to appreciate life. No threshold met. .

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

Ivory Tower

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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, Fear, Life, Lupus, Pain

Air

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The sun shines in the glorious state of summer moving to fall. The brightness stings my eyes. My head resonates with pain from every sound and flash of light. My face reflects a perfect red butterfly. My body aches. And I gasp for a gulp of crisp delicious air. My hand reaches for the red inhaler. Apropos red, emergency, life. I suck in a puff. My lungs are not open enough to take in enough. I close my eyes and concentrate hard to get in that second puff. I wait.

Today I am fragile. I feel uneasy. I feel exhausted. Air. That sweet breaths that support life. The wafts that make leaves skip in the sky. Support birds and airplanes. Invisible yet so unbelievably necessary. Air that cannot get into my lungs. I feel the quiver in my chest. Air beginning to move through the arid desert that is my lungs.

I live the odyssey. My blood work looked pristine. The doctor says I am working hard. A first in five years. But, there is always a but. The damage is ongoing. The moderate airway damage to my airways is there. The weight that sits on my chest. The pounding in my head. The warning beacons. The constant reminders that life is so important. That the air we expel should be chosen wisely.

I laugh at the weeks reminders and it is only Thursday. The man wasting his air about the possible misdeeds of another. The priest warbling about a life in paradise. I’m sure her parents want her here and could care less about paradise. Politicians preaching about their fixes to a country hopelessly divided and gone astray. Animals in foreign lands preaching deadly philosophies. Animals on home turf equally disturbing. All using and wasting precious air.

I shut the intrusive thoughts away. I close my eyes. I try to breathe that beautiful, crisp, life sustaining air. Air sweet air.

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

Wine not whine.

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The humidity and heat creates an unbearable duplicity in my body. Fatigue and air hunger add to the myriad of ever present symptoms my mind and body function with daily.

A car ride filled with the frenzy of souls on the road as the panic of the back to school season begins ends in a doctor’s office filled with people who as I listen to the cacophony of whining fills the air. A secretary who whines about the same bad day she has every time I visit the office. A couple who refuses to fill out the paperwork including where they live because they are tired of filling out paperwork. ( i have 17 physicians..do not whine to me about paperwork). A woman and her girlfriend have a conversation about their friend’s prostate at a decibel level that would defy the Blue Angels. An older couple bicker about where to go out to dinner and the fact that Katie Couric looks terrible in that scarf. This discussion was mildly amusing as their love shone through. And the whining continued among the room filled to the gills from every corner. I keep my head buried in my book writing trying to remain disengaged as my daughter hates when I chat. It is hard to explain to her that this keeps my terrifying fear from taking hold. I choose not to whine.

It is my turn to be seen. I am used to the format of discussion exam discussion. My doctor is warm and caring. The discussion well for lack of better terms sucks. I choose not to whine. Tears do sparkle in my eyes The ct scan that showed my miserable kidney stone also showed the utter destruction my disease and its treatment are wreaking on my blood vessels in my abdomen and pelvis. “Your brain has smaller vessels..large clog in smaller vessel.” You get the picture. Thankfully my doctors agree that i deserve to be comfortable. We discuss this as we remove a med that helped my headaches but is contraindicated in kidney stones. Kidneys win this one. Cannot piss them off more. They are spilling protein. I promise to let him know if the right side of my head continues to feel like bombs exploding. We discuss the electrolyte issues secondary to my diarrhea. After tons of tests, probably caused by the cellcept. The drug that is keeping the tenuous thread of my disease and my life balanced. When I cannot stay hydrated and chemically balanced the drug will be stopped. The lupus will win. I discuss my new therapist..it explains my glow. Thank you Don for that peace.

I diligently report to the exam room. My BP rings in at 120/58. The one good thing going on. My neuro exam remains the same…all showing abnormality. A left lacunar infarct and a right frontal lobe infarct plus atrophy in the pons and brainstem will do that. He knows it sucks. I know it sucks. He helps me off the table as we discuss Marc Chagall artwork. That is much more fun than talking about brain decay.

We return to discuss. Renew pain meds. Discontinue other med. Return in two months. A hug and a kiss and I return to the waiting room filled with whining.

I drive with my daughter to the nail salon for a treat. And the same scene plays out again. Whine..the waxing hurt..school starting..the dentist..my toe fungus..my boyfriend.. Blah blah. I smile and breathe. (Don would be happy). Shut out the whine. I am happy for my gifts. I think as I look at my reflection, I do look good. Lol. I wonder why people do not learn to appreciate things and hear themselves. Wine is better than whine.

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.

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.

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

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

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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.