Category Archives: Feminity

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

Presents, Presence and Princess

4 Comments

This is a tough week my lupus is like an angry witch turning flesh into stone. My body is stiff and sore. My head aches and with each turn the room spins. My joints burn with an insatiable pain and form stiff barriers to motion. My ribs are stiff and inflexible preventing the movement of air. My vision blurry and my face a picture of the red butterfly. Lupus, the wolf is howling at the moon. Despite all this I am peaceful. A peace that comes from deep within and not courtesy of a pill.

Yesterday was my day for me. A therapy session with an incredible man. A dinner with an incredible friend. My soul salved by both. Western medicine has reached a set of limitations. My body ill and frankly I feel just keeping from sinking. My mind active and pleading. Calling constant orders like a marine drill sergeant. I am a victim of my own thoughts. I have entered into a therapeutic relationship that combines dynamic interactive therapy, breath and relaxation techniques, and tactile stimulation. That description defies reality. To me it is like the opening of a flower, unfurling a flag, unwrapping Christmas presents. It is pure peaceful splendid joy. My mind and body is being taught to surrender. Surrender the angry voices, surrender the pain, surrender. In this case it is not giving up. It is surrendering to a war not winnable and raising a gauntlet to find a battle I can win. It is like standing at a door, banging on it to get the attention of someone behind it, my knuckles bloody from the immovable attempt. And then lifting my eyes to see a door wide open beside it and walking through. It is learning asking for what I want and accepting that not only can I attain it but that I deserve it and I am not selfish for asking. Tears fall like rain because I am safe, secure and allowed. This is an amazing gift, being in a space free to be…no worries on what I say or how it sounds. Free to experience because it is a place for me in the presence of someone present for only me. Eyes focused on me, the sound of my name like a beautiful clarinet. Peace and warmth. Sanctuary. Bliss. It is unique to feel honored and special…A princess as she is someone who receives all the spoils of love and adoration without having to constantly be the one in command. I relinquish command. No more sacrifice, no more paying the price. No more feeling as cold as ice to make it through the day. No more detachment from the body that is so trying to fail. My body’s failure is not my failure. The walls are breaking down. I am walking through a new door. God only knows why it has taken myself so long to figure out to take this trip to Bountiful. To this incredible therapist who allows me to be and makes me glow from it all. Bless you.

And to my glorious friend the Red Hare where conversation can go from apple pie to sex toys. I close my eyes and laugh. I can feel it . Open to her presents of presence. Love and friendship shared through time and adversity and amusement. I can smile abandoned as well as cry tears of sadness and joy. Safe to share this trip to bountiful unafraid or embarrassed. To her bless you.

I am learning to be unafraid to walk that mile until there is no more road. And thanks to this love and support I expect it to be a very long trip.

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.

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….

 

 

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.