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
This is Janavi currently, weighing 93 pounds.
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.
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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
Letters to My Oldest Friend 