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Sharon's Nook Living with Lyme News About Us

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Sharon's Bio

For more than a decade, I suffered from numerous mysterious or rare maladies.  I saw internists, gastroenterologists, endocrinologists, chiropractors, orthopedists, neurologists, neurosurgeons, pyschiatrists, phychologists, dermatologists, urologists, osteopaths, and then three rheumatologists.  Some of them offered relief for my symptoms, but no one offered a cause. 
In early 2009, I became almost bedridden with back and knee pain.  Through the grace of God, four months later, I found the RIGHT doctor who diagnosed me with late stage chronic Lyme disease.  I began treatment on October 16, 2009, one day after my dad's 80th birthday. 
This is my perspective of my Lyme journey. 


Tell Me Everything

When Jeff's dad died on New Year's Eve, I wrote a poem about all the things I told him in the final three days we had with him. That started me thinking about what I would want to hear in my final days. And that's how I wrote this: Tell Me Everything When I am lying in bed, Dying, And you know I won’t survive I want you to prepare my room – Bring fragrant spring flowers at my bedside. Cover me with softest blanket you can find, preferably in pink. Dim the lights and keep it calm. Light a gardenia candle. Spray eucalyptus oil on my sheets and keep them neat. You know I need a neat bed. Drop some lavender oil on my pillow Dab my favorite perfume behind my ears. Mix your organic honey with the morphine; release the sweet nectar on my tongue. I want you to have Hospice come in and take care of the things they do so well. Because you and I have a lot of talking to do. This is our last chance to say what we need to say. And I want it to be our best conversation ever. My primary job here is dying. So you need to do most of the talking. I made you a list, because you know I like making lists and I like keeping you organized. I want you to tell me: You love me. You don’t want me to leave, but it’s ok to leave. Tell me every bad pun you can think of. Tell me I was a good mother, a good stepmother A good wife, a good person. Remind me of how I helped people, A time when I showed courage. Reminisce about your favorite memory of us. Tell me what you loved about me; when you made me laugh or when I made you laugh and most importantly, when I drove you crazy. Tell me about your favorite tender moment with me. Tell me about a time when you were watching me and I didn’t know it. What was I doing and why did you watch? Assure me it was ok to want to be a hermit; that I can be a hermit in heaven too, if I choose. When you don’t know what else to tell me, then read to me. Read me your favorite poems. Read to me David Whyte, Oriah Mountain Dancer, Sue Monk Kidd, Shakespeare, poems by my friends. In fact, write me a poem and share it with me. Tell my friends to write poems and send them to us. We can laugh together in the silence. Read to me The House at Pooh Corner Proof of Heaven by Eben Alexander Us by Michael Kimball And then tell me more bad puns (there are books filled with puns in case you need some help). But do not read to me Billy Budd; I still do not like Herman Melville. And do not read Dante’s Inferno. List me your favorite book titles. Explain why they are your favorites. Name your favorite character from each book. If you want to play music, play me the Beatles “I Will,” “Blackbird,” “And I Love Her.” Play me a little Chicago, Pat Metheny, and Dave Matthews. Fill my room with Earth, Wind and Fire, and Sting, and Joni Mitchell but softly. Don’t let it hurt my ears. Play the B-52s “Love Shack” at least once. I want to dance in heaven better than I could dance on earth. Tell me I can dance in heaven, even with everyone watching. Play me “Big Country Sky” by Chris Whitley so I can see far and wide. Let Seal serenade me to heaven. Tell me about your favorite songs. And sing me just one. Tell me what happened today. Tell me what your last ice cream cone tasted like and what today smells like. Don’t leave me and sit in the next room. Take shifts, but keep someone with me. I know I wanted to be alone so much in life, but I don’t think I want to be alone when dying. Dying is hard work; and I think I need you at my side. Lie beside me and play with my hair. Hold my hand, caress my cheek, rub my arm. Let my friends do the same if they wish. Kiss me gently and tell me you love me. And tell me it’s ok to go. I think I am going to need to hear it a few times. Tell me my skin is soft and not too pale; that I look good despite my gray roots and no mascara. Assure me that when I go to heaven I will have no more pain, no more sickness, no more limitations. Describe how my soul will be free of my body and it will be beautiful. Tell me you love me again and that you will be ok without me. Tell me it’s ok to let God take over. Ask me if I see the angels yet. Ask me what heaven looks like. Ask me to come in your dreams and to stay in your heart. And then, Let me go. - Sharon Rainey, 1/1/15
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Lyme resources

www.galaxydx.com
www.beatingbartonella.com
www.whatislyme.com
web.ncsu.edu
www.sharonlivingwithlyme.com
www.tmgmd.com
www.betterhealthguy.com
www.lymedisease.org
www.wildcondor.com
www.ilads.org
Overcoming Lyme
www.ladyoflyme.com/
www.lymenet.org
My Blind Spot Journey
www.lymediseaseassociation.org
www.publichealthalert.org
www.lymeinfo.net
www.lymefriends.org
www.lymepedia.org
www.lymechick.com
www.lymediseaseaudio.com/
www.underourskin.com
www.cheryllyme.blogspot.com/
www.joethetick.com
www.lymepa.org
www.lymetap.org
Lyme Links
www.butyoudontlooksick.com
slippiingthroughthecracks.blogspot.com

Lyme quote

As we open to what is actually happening in any given moment, whatever it is or might be, rather than running away from it, we become increasingly aware of our lives at one small part of a vast fabric made of an evanescent, fleeting, shimmering pattern of turnings. Letting go of the futile battle to control, we can find ourselves rewoven into the pattern of wholeness, into the immensity of life, always happening, always here, whether we're aware of it or not.

Sharon Salzberg, Faith: Deepening Your Own Deepest Experience



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