arianddannie

In the dark of night- not for cowards

In Medical on April 14, 2014 at 3:58 am

This morning at five – rising pain. So far, this long night and dark morning, she is holding on at home… Thirteen visits to the emergency room in three weeks. Working all day while she fights back pain at an 8 with our new care giver, Maria, at her side… then when she can no longer… pain escalating to a 9 from the weariness of the day and all resources utilized… we are left to head to the hospital… and relief is not forthcoming~

Helping her to the car in the dark of night, trying to drive fast but careful- missing bumps, sharp starts and stops, that radiate pain through her body… parking in the drive way in front of the emergency department, flashers on, I run in and get a wheel chair, run back and carefully help Dannie out of the car, wheel her in and hope to be greeted by a warm face and caring, leave her there, park, run back, registration, questions, describing the indescribable, asking what doctor is there in hopes of receiving compassionate care, asking about the wait, sitting in the waiting room, rocking, breathing, massaging sometimes, sometimes touch isn’t good, listening to music, wiping her brow… and finally a bed… wheel her in, undress, get on the table and wait again…dim the lights, praying for compassion and help… praying for quick response… by now the pain has been at 9 – 9.5 for hours… Answering financial questions, nursing questions waiting for the doctor….  and not knowing if the response will be one of impatience or assistance, whether I will be able to breath and know that help is forthcoming or if I will have to carefully negotiate to get my daughter help. Doctor flips on the glaring light and decides. Dannie waits again… and relief is, at best partial— if back down to an 8 we go home for her to continue to white knuckle it and pray that it will not rise again. So grateful to Annegret and Janae for their answer to my calls, for their loving presence, for taking time from their busy lives. Most recently the hospital is ready for her to leave when her body is not yet relieved– discharge papers left on the bed, pain coming home with us.

Home, settle her into bed.. no settling. Nap a bit… get up, arrange medications, wait for Maria and I am off to work, carrying her in my heart all day long. Checking in with Ari who is facing challenges of another kind, longing to be along side him as well, cramming in phone calls at lunch to keep moving forward, obtaining care, pursuing new avenues…and the other stuff of life.

Thirteen times in three weeks.

I am praying for Dannie to have a peaceful day- she hasn’t had a pain free day since 2001. She doesn’t remember what a body at peace feels like or what it is like to plan a day and be able to realize it….To get out doors and to leave the house for other than a medical appointment or hospital visit has been  so rare.

Only faith and love have sustained her. Her world has been so small and it takes courage for someone to venture in to it, to be present, to love and not retreat….she craves a big extended family, dinners, people all around. She is, by nature, a social warm person, thriving on connection. Yet this disease takes the ability to initiate and sustain relationships  away, and leaves her subject to who will reach out and be here despite her inability to actively reciprocate as she would like. So many longings in her heart that she cannot fulfill. She has put her heart on the line over and again – To feel she is a part of something – that she belongs, that she is significant and not forgotten. To be brave enough to let others in, not knowing if anyone will stay, to believe that she is worthy. Sometimes she feels she is living in a pretend world, believing in things not seen, as the evidence is not there… Longing to  relate with human beings other than me, Ari and care providers, to know she matters—to have relationships with history, over time.

Her isolation makes each interaction tremendously significant.  Abandonment is a more searing pain than the physical  pain- to feel insignificant, dismissed, left behind, not important enough, replaced and  forgotten. To be recognized as a human being, with real feelings, real needs, for the things and experiences we all take for granted- that she is worthy, lovely, lovable. This she needs to live… For others speak hope, encouragement and care to her when she needs her hope enlivened or cannot hold it for herself- to offset the inhumanity of her isolation, her pain, her loss, and the trauma of medical treatment, compassion-fatigued and even mean spirited or cold providers. She is whimpering in her sleep next to me right now as I lay beside her, praying and visualizing health.

She has not had a pain-free day since she was ten-

Yet I believe today can be that day. Envisioning her on horseback, free. FREE. ”

Please Remember her Spirit and Join Me in Seeing Dannie Healed.

Please Remember her Spirit and Join Me in Seeing Dannie Healed.

  1. Dannie, Kate and Ari…

    I think of you all often and always keep you in my prayers. I wish nothing more than peace and healing for all of you. This will have a happy ending. I just know it!

    • Thank you, Dear Erin. Your prayers and friendship mean so much. Please say hello to your mom for us, and come visit- both of you, sometime if you can. hugs, K

  2. Hello Kathleen

    I am so distressed to hear that you are still trying to deal with Dannie’s incredible pain and ill health ~ I wasn’t able to read to much about Ari’s current state of health and hope he is making some progress (??).

    We continue with Jason’s health issues and have been on a very different path the past 11 months. We discovered he had an Arterio Venous Malformation in the spinal cord and has been under the care of a neurosurgeon in Marina del Rey. Two weeks ago he had a 2nd surgery to remove the “mass” and is recovering quite well. He is in good spirits and we are hoping that this may be the underlying cause of some of his symptoms. Time will tell!

    Please wish both Ari and Dannie all the very best from Jason and myself and, mother to mother, I hope that you are managing to take good care of yourself during this very difficult journey. There is nothing worse than having children in ill health.

    With warm thoughts of you all.

    Valerie

    From: A Journey of Faith and Healing <comment-reply@wordpress.com> Reply-To: A Journey of Faith and Healing <comment+pdnn3agzqcdozg-209wvqc@comment.wordpress.com> Date: Sunday, April 13, 2014 at 6:29 PM To: Valerie Melman <valerie@nevele.ca> Subject: [New post] In the dark of night- not for cowards

    arianddannie posted: “This morning at five – rising pain. So far, this long night and dark morning, she is holding on at home… Thirteen visits to the emergency room in three weeks. Working all day while she fights back pain at an 8 with our new care giver, Maria, at her side”

  3. Praying for God’s healing power as only He can preform. Miracles .
    Genesis 18:14,
    Nothing is too. hard for The Lord

  4. Hi Kate,

    Spirochete love and spread on anything that includes sugar and carbohydrates…

    The only way to save your daughter is putting her on a non-carbohydrate and sugar-free diet constisting of only raw or slightly steamed legumes. No fruits due to the sugar (I repeat: no fruits), no beetroot and no carrots (also due to sugar) and no nightshades (no potato, no tomato). I suggest salad, spinach, broccoli, cabbage, cauliflower, kale, collard greens and brussels sprout. That’s the only way out.

    I’m suffering from lyme too, but above diet takes all lyme symptoms away. The spirochete get inactive and don’t produce toxins anymore (note: they won’t die, so there will be no herxing). I’m still searching for the final treatment of lyme. Maybe I will get the same treatment as Ari, too? For now, I just hope hat Dannie will become healthier soon.

    Hope this helps,
    Mike
    (PS: If you send me an email I could inform you about other important things, including a list of foods and supplements that are very harmful in case of lyme…I just don’t want to post these infos here)

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