In the end there is one dance you’ll do alone…..

in the end there is one dance you_ll do alone

 

For a Dancer ( by Jackson Browne)

https://www.facebook.com/OfficialJacksonBrowne/

https://www.gofundme.com/saving-janavi

paypal.me/pools/c/87lRidKXWt

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Book Giveaway

❣️BOOK GIVE AWAY!!!❣️

❣️Dear Friends, We are giving away a hardcover copy of Janavi’s beautiful book of poetry and photography to draw attention to the fundraiser. She is seriously ill and needs your help. To enter please give a donation of any amount or if you are unable, please share this post with as many friends as you can.

https://www.gofundme.com/saving-janavi

❣️After you’ve donated or shared please click this link to enter. You’ll be asked to watch a book trailer with a review by Catherine Schweig and poem read by Janavi Held

https://www.amazon.com/ga/p/d87d82713d695b19…

Thank you friends❣️ We are grateful for your help

 

 

Mockup - png with lotus

 

Saving Janavi

https://www.gofundme.com/saving-janavi

I am taking care of my sister Janavi who has been ill and in terrible pain for 6 years.  Her condition has been diagnosed as Complex Regional Pain Syndrome and Internal Adhesions.  When she came to live with me two years ago she weighed 97 pounds.  We improved her diet and her weight peaked at 115 pounds.  But she has gotten worse and now she shakes so badly that she can barely eat even though she is hungry.  She weighs 93 pounds.  No one has been able to help her, and I’m afraid that she is going to die.

Janavi has no pain relief because she gets dangerous reactions to most pain meds.  She is still looking for a solution.  She’s never given up.  She wants so badly to just have a normal life and do things for herself.  She hasn’t been outside for over a year, except for two ambulance rides to the hospital.

The main purpose of this fundraiser is to find ways to substantially reduce Janavi’s pain.  Most of the things we have to try are not covered by Medicaid.  But we need to move forward because her symptoms are getting worse.  She needs to see a practitioner who does not take her insurance.  She wants to rent a Bemer machine to see if it will help (this technology was highly recommend by a close friend who is a doctor).  And if it really helps, I want to actually buy one for her.  I’d like to connect her with a group that tries to solve medical mysteries.  And I’d also like her to get genetic testing.

A secondary purpose is help with her ongoing expenses.  She is disabled and can’t cook for herself at all.  She needs home care but Medicaid will not pay for it because she is not completely helpless.  Janavi tries very hard to do things for herself even though it is very painful for her so I don’t know if Medicaid will ever pay for her home care.

https://www.gofundme.com/saving-janavi

I am taking care of my sister Janavi who has been ill and in terrible pain for 6 years.  Her condition has been diagnosed as Complex Regional Pain Syndrome and Internal Adhesions.  When she came to live with me two years ago she weighed 97 pounds.  We improved her diet and her weight peaked at 115 pounds.  But she has gotten worse and now she shakes so badly that she can barely eat even though she is hungry.  She weighs 93 pounds.  No one has been able to help her, and I’m afraid that she is going to die.

Janavi has no pain relief because she gets dangerous reactions to most pain meds.  She is still looking for a solution.  She’s never given up.  She wants so badly to just have a normal life and do things for herself.  She hasn’t been outside for over a year, except for two ambulance rides to the hospital.

The main purpose of this fundraiser is to find ways to substantially reduce Janavi’s pain.  Most of the things we have to try are not covered by Medicaid.  But we need to move forward because her symptoms are getting worse.  She needs to see a practitioner who does not take her insurance.  She wants to rent a Bemer machine to see if it will help (this technology was highly recommend by a close friend who is a doctor).  And if it really helps, I want to actually buy one for her.  I’d like to connect her with a group that tries to solve medical mysteries.  And I’d also like her to get genetic testing.

A secondary purpose is help with her ongoing expenses.  She is disabled and can’t cook for herself at all.  She needs home care but Medicaid will not pay for it because she is not completely helpless.  Janavi tries very hard to do things for herself even though it is very painful for her so I don’t know if Medicaid will ever pay for her home care.

This is a photo I took of her two years ago
30336320_15280068020_r.jpeg
This is Janavi currently, weighing 93 pounds.
30336320_1528488374813225_r.jpeg
I love my beautiful little sister.  I want her to get her life back so badly.  Please help me save her.

===https://www.gofundme.com/saving-janavi

Our God-mother wrote this for Janavi last month:

A graduate of Goddard College where she studied poetry, photography and media, Janavi Held was an up-and-coming writer and photographer when she was stricken at age 46 with an illness that now, six years later, is still debilitating her so that she cannot walk up or down stairs without help, she can only walk short distances around the house, and can only stand up for less than a minute at a time, sit in a car, or cook. She made the usual traditional medical rounds, tests, consultations and treatments, plus sessions with a myriad of healers and herbal remedies, but to no avail. Her condition has been labeled Complex Regional Pain Syndrome and Internal Adhesions, but nothing has been able to ease her constant pain or progressive weakness.

Please give what you can share the link widely. 

Last fall her condition worsened, the pain increased and her weight plummeted to 95 pounds. After an ambulance ride to the hospital, a forty-eight hour stay and a whole battery of tests, she left the hospital in worse pain; they could do nothing for her.

Twenty-six months ago her sister Sue took Janavi her into her home in Colorado and set up a bedroom for her. Sue works full time but devotes much of her time to Janavi’s care. Because of Janavi’s worsening condition (she can barely walk at all, is in constant pain, and using her arms has become very painful as well), they have been forced to pay a home care agency to take care of Janavi and support Sue with other household tasks. In order to pay for home care and cover incidental expenses, as well as uncovered medical expenses, they need at least $15,000 a year. Sue’s salary cannot cover this additional cost. The only coverage Janavi has is Medicaid.

Janavi is such a talented, spiritual soul. During these years of her illness, Janavi took refuge in her practice of Bhakti yoga which she had embarked on when she was nineteen. Her faith and persistence enabled her to write Letters to My Oldest Friend, a book of poetry and photography.  This book of poems and photography that she produced in the years since her disease struck are so beautiful. In 2017, two of her poems were shortlisted for the prestigious Hamilton House International Poetry Prize and where included in a book entitled Eternity.

Now, she can barely type or read because of the persistent pain. These sisters, whose parents are gone, need help in order to survive.

Janavi refers to me as “her fairy godmother.” Oh how I wish I had the power to disappear her pain.  ~ Marcia Newfield

Review by Anita Neilson

Letters to My Oldest Friend
by Janavi Held (Goodreads Author)

62048552

Anita Neilson‘s review

Nov 04, 2017
This is simply glorious. The words flow gently across the page in a waterfall of despair and hope, grief and faith, pain and joy. Together with beautifully crafted photographs of the natural world, it is a wonderful, precious undertaking. The poems will resonate strongly with anyone afflicted by a chronic illness or spiritual malaise. Quite breathtakingly haunting in their longing for God. The pull between enjoying the delights of this Earth and the soul crying for greater meaning is much in evidence. For example, in the poem “Eternity”, the poet says, “in this world of change I am longing for You yet I am drawn again and again to the shiny fortunes of this shallow world.” This reduced me to tears, so near was it to my experience of life. These are the sweetest, most poetic, most haunting of verses, to be savoured again and again. Buy a copy and keep it close to you, so that each time you feel sorry for yourself, or angry at someone (even God), open it and read a verse or two. Your spirits will be lifted!

Flooding

Flooding. jpgThe Sky in the heart.

Flooding

Within the
shadowy waters
of illusion
I built thick
castle walls
sunken deep
in those hazy waters
my heart froze
and slept for eons.
Awakened from this
deep sleep of ignorance
by a flood of
Your liberating
monsoon rain
You’ve opened the sky
in my heart
and the
walls of my fortress
are a sunken wreck
I have floated
to the surface
waves
crushed my body
as I rose You
carefully collected
all the lost parts
and knitted me
together with
Your lovely hands
saturated with
eternal love.

~ Janavi Held © 2017