Jonia's Road To Healing
Donation protected
Aloha,
I have set up this GoFundMe to provide support for a beautiful person in my life. As she does everyday with everyone, she has blessed my life in more ways than one. She has been my teacher, my mentor, my dear friend, and family on this island we call home. Her name is Jonia and I would like to share her story below from her own words.
I thank you in advance for opening this page. If you are able to donate monetary support to this wonderful person in my life, that will ease the burden of medical costs as the path to healing has just begun. As she shares below, "keeping spirits up and alive in love" is a beautiful way to support and one of the greatest gifts of all.
Note from Jonia:
Note from Jonia:
November 13, 2021
Approximately 12 weeks ago I woke up with excruciating pain in my legs and spine. Since then, the pain has come and gone, unfortunately in the last 9 weeks mostly constant. I am managing the pain with yogic meditation, hot Epsom salt baths and bodies of water when I can get there. Ocean, waterfalls and rivers, OH MY! I do grounding everyday with my feet on the ground for at least 30 minutes and when my hubby boo is home we lay on the aina and stargaze. ( I need his help to stand up off the ground). I also take Extra Strength Tylenol daily, which can take the edge off so I can move.
Currently, I'm doing my best to get the best care possible, including all forms of medicine. So far, acupuncture, chiropractic and naturopathy have proven to be the best experiences for symptom relief, albeit temporary.
The pain can get to the point where it's hard to walk and impossible to drive. At times, I can muster the strength to drive but only if it's essential. I've been able to drive short distances once or twice a week.
When I walk, sometimes I look like I just got off a horse that I rode for 20 years. And by evening time, sometimes I don't have the strength to lift my legs into bed and need help to do that. Also, in the last few weeks I've had a Parkinsonian-like tremor that comes and goes. I am seeking out an accurate diagnosis and we will need to travel to other places off island for more medical expertise. Ultimately, I may choose the Mayo Clinic. Right now, I don't have the strength to fly that far.
Thank goodness for my wonderful husband Barry and our phenomenal supportive community who are bringing yummy organic food and giving me rides when needed. A special shout out to Michelle, Kaia, Tori, Melskie, Eleykaa, Kellie Bean, Patrice, Alexandria, Becky and Barry Barthe who in the last two weeks brought food, did grocery runs and gave rides when needed. Thanks to Genesis and Sulara who generously guide me with Genesis's medical experience as a retired physician and current shamanic practitioner and Sulara with her infinite intuitive gifts. Also, many thanks to my chosen family in Colorado, Mama Marcia and Grandma Hannah, and to Marcia for sharing her gifts and skills as an end-of-life guide. I am making sure all my end of life affairs are in order, including Medical Power of Attorney, Financial Power of Attorney, End of Life Environment, Living Will, Do Not Resuscitate as well as completing the 5 wishes document. So if this doesn't kill me, at least I'll have my paperwork in order! LOL
While I have had many painful physical experiences in my life, I've never had anything that comes close to describing what I'm currently experiencing. Humor helps.
Fortunately, I have learned to focus even when I'm in pain so I'm able to work approximately 5-10 hours a week. That's 20 hours less than I usually work per week so I'm really creating the space to rest. Of course, I'm not able to facilitate any body work, which I miss dearly. Most of my work is by telephone and Zoom. The 5-10 hours are beautiful as I am blessed to work with amazing people.
My next steps are:
Keep my spirits up and love alive...live music and humor in the hale! Remember Thich Nat Hahn's words, "The joy and pain are one." Continue the discipline of not turning the pain into suffering. "May all beings be relieved of suffering and the roots of suffering." - Buddah
Remember: "If it's happening in my life, it's happening for my life, and hopefully for the lives of others." -Jonia Mariechild
1. Get another opinion on the CAT scan and MRI'S. So far, I've had two conflicting opinions, one from a Nurse Practitioner at the ER and another from my GP. I have requested that my Naturopath review the CAT scans and MRI's while I wait for my other doctors appointments.
2. Continue with weekly acupuncture (or maybe two times a week, depending on my tolerance) and weekly chiropractic. Continue with a really clean anti-inflammatory food plan, no refined sugars, dairy, gluten or caffeine. At least 80 ounces of super pure water daily.
3. Follow up with the appointments to rheumatologist, neurologist, and continue with intuitive practitioners. Get the order for the spinal tap to rule out: Rat Lungworm Disease, Multiple Sclerosis and Gillian-Barre Syndrome.
4. Continue with receiving two emotional support sessions a week, working with a skilled compassionate practitioner who does Internal Family Systems work. I am acutely aware that my mother's death on July 14, 2021 impacted me emotionally. I had no idea how much I hoped my brothers and sisters would include me in the division of the estate until they didn't. Highly shocking, not so much about the money but about the unjust treatment of me as a scapegoat in the dysfunctional family system. I am healing from the cruelty of exclusion. My mother legally disinherited me 8 years ago after my father died, one of her many acts of cruelty as she projected her shadow onto me throughout my life. Humph. Fertile ground for growth, indeed. Fecundity abounding.
5. Keep my spirits up, my sense of humor on board and my loving, compassionate inner foundation strong.
6. Do daily updates for my beloveds on the CaringBridge website so that you know what's up. If you or someone you know would like added to this list, please message us here. Barry, Kellie Bean or myself will get back to you asap.
7. Complete the Go Fund Me as medical bills are adding up and I choose to pay out of pocket for many tests and procedures due to the fact that:
1. They are recommended and not covered -or-
2. I refuse to make my body wait for bureaucratic insurance policies that could kill me as I wait for insurance authorization of diagnostic testing.
Our insurance system is broken and it's a Humpty Dumpty situation. But of course it is, it's a fear-based system that's built on the idea that humans won't be there for each other in times of need and so we resort to some corporate conglomerate to "take care" of us. Argh. ARRRGH. Bow-wow-wow! Rant complete, for now, thank you.
8. Keep having quality time with my devoted husband Barry, my doggie Co-Co Boy and my garden.
9. Keep working with my energy medicine practices, Qigong and Hawaiian Huna healing. Thanks to beloved Shary Crocker for her sharing her Qigong gifts and resources to guide and light my path.
Update Nov 13, 2021 at 4:45pm
From Jonia:
I am home from the ER now, STILL NO CLEAR DIAGNOSIS. They are afraid to do a spinal tap/lumbar puncture at this juncture due to "risks outweighing the benefits". They are wanting me to wait until I see the neurologist on December 8th, the ER doc stating "Even if we do find out it's rat lungworm disease, it's been 3 months and there is nothing we can do to treat it." Though I know that Chinese Medicine has a protocol that could help me and I am in contact with the doc on the Wet Coast who invented it.
I trust everyone is doing the best that they can, given their access to their resources.
An upside is the paramedic, Andrea, who drove me in the ambulance at 6am this morning was super compassionate, very competent and really tried to talk the ER into testing me for meningitis or some other infection. She stepped "out of her lane" an was a tiger for me!
I love you and thank you for caring about my well being. The coconut wireless is already calling and I hope this can clarify anything different that you might have heard. To reiterate, there is no diagnosis or cause known yet and we will be keeping you updated via this site. Please check the Journal Entry section for further updates.
Aloha, Mahalo, Namaste.
Approximately 12 weeks ago I woke up with excruciating pain in my legs and spine. Since then, the pain has come and gone, unfortunately in the last 9 weeks mostly constant. I am managing the pain with yogic meditation, hot Epsom salt baths and bodies of water when I can get there. Ocean, waterfalls and rivers, OH MY! I do grounding everyday with my feet on the ground for at least 30 minutes and when my hubby boo is home we lay on the aina and stargaze. ( I need his help to stand up off the ground). I also take Extra Strength Tylenol daily, which can take the edge off so I can move.
Currently, I'm doing my best to get the best care possible, including all forms of medicine. So far, acupuncture, chiropractic and naturopathy have proven to be the best experiences for symptom relief, albeit temporary.
The pain can get to the point where it's hard to walk and impossible to drive. At times, I can muster the strength to drive but only if it's essential. I've been able to drive short distances once or twice a week.
When I walk, sometimes I look like I just got off a horse that I rode for 20 years. And by evening time, sometimes I don't have the strength to lift my legs into bed and need help to do that. Also, in the last few weeks I've had a Parkinsonian-like tremor that comes and goes. I am seeking out an accurate diagnosis and we will need to travel to other places off island for more medical expertise. Ultimately, I may choose the Mayo Clinic. Right now, I don't have the strength to fly that far.
Thank goodness for my wonderful husband Barry and our phenomenal supportive community who are bringing yummy organic food and giving me rides when needed. A special shout out to Michelle, Kaia, Tori, Melskie, Eleykaa, Kellie Bean, Patrice, Alexandria, Becky and Barry Barthe who in the last two weeks brought food, did grocery runs and gave rides when needed. Thanks to Genesis and Sulara who generously guide me with Genesis's medical experience as a retired physician and current shamanic practitioner and Sulara with her infinite intuitive gifts. Also, many thanks to my chosen family in Colorado, Mama Marcia and Grandma Hannah, and to Marcia for sharing her gifts and skills as an end-of-life guide. I am making sure all my end of life affairs are in order, including Medical Power of Attorney, Financial Power of Attorney, End of Life Environment, Living Will, Do Not Resuscitate as well as completing the 5 wishes document. So if this doesn't kill me, at least I'll have my paperwork in order! LOL
While I have had many painful physical experiences in my life, I've never had anything that comes close to describing what I'm currently experiencing. Humor helps.
Fortunately, I have learned to focus even when I'm in pain so I'm able to work approximately 5-10 hours a week. That's 20 hours less than I usually work per week so I'm really creating the space to rest. Of course, I'm not able to facilitate any body work, which I miss dearly. Most of my work is by telephone and Zoom. The 5-10 hours are beautiful as I am blessed to work with amazing people.
My next steps are:
Keep my spirits up and love alive...live music and humor in the hale! Remember Thich Nat Hahn's words, "The joy and pain are one." Continue the discipline of not turning the pain into suffering. "May all beings be relieved of suffering and the roots of suffering." - Buddah
Remember: "If it's happening in my life, it's happening for my life, and hopefully for the lives of others." -Jonia Mariechild
1. Get another opinion on the CAT scan and MRI'S. So far, I've had two conflicting opinions, one from a Nurse Practitioner at the ER and another from my GP. I have requested that my Naturopath review the CAT scans and MRI's while I wait for my other doctors appointments.
2. Continue with weekly acupuncture (or maybe two times a week, depending on my tolerance) and weekly chiropractic. Continue with a really clean anti-inflammatory food plan, no refined sugars, dairy, gluten or caffeine. At least 80 ounces of super pure water daily.
3. Follow up with the appointments to rheumatologist, neurologist, and continue with intuitive practitioners. Get the order for the spinal tap to rule out: Rat Lungworm Disease, Multiple Sclerosis and Gillian-Barre Syndrome.
4. Continue with receiving two emotional support sessions a week, working with a skilled compassionate practitioner who does Internal Family Systems work. I am acutely aware that my mother's death on July 14, 2021 impacted me emotionally. I had no idea how much I hoped my brothers and sisters would include me in the division of the estate until they didn't. Highly shocking, not so much about the money but about the unjust treatment of me as a scapegoat in the dysfunctional family system. I am healing from the cruelty of exclusion. My mother legally disinherited me 8 years ago after my father died, one of her many acts of cruelty as she projected her shadow onto me throughout my life. Humph. Fertile ground for growth, indeed. Fecundity abounding.
5. Keep my spirits up, my sense of humor on board and my loving, compassionate inner foundation strong.
6. Do daily updates for my beloveds on the CaringBridge website so that you know what's up. If you or someone you know would like added to this list, please message us here. Barry, Kellie Bean or myself will get back to you asap.
7. Complete the Go Fund Me as medical bills are adding up and I choose to pay out of pocket for many tests and procedures due to the fact that:
1. They are recommended and not covered -or-
2. I refuse to make my body wait for bureaucratic insurance policies that could kill me as I wait for insurance authorization of diagnostic testing.
Our insurance system is broken and it's a Humpty Dumpty situation. But of course it is, it's a fear-based system that's built on the idea that humans won't be there for each other in times of need and so we resort to some corporate conglomerate to "take care" of us. Argh. ARRRGH. Bow-wow-wow! Rant complete, for now, thank you.
8. Keep having quality time with my devoted husband Barry, my doggie Co-Co Boy and my garden.
9. Keep working with my energy medicine practices, Qigong and Hawaiian Huna healing. Thanks to beloved Shary Crocker for her sharing her Qigong gifts and resources to guide and light my path.
Update Nov 13, 2021 at 4:45pm
From Jonia:
I am home from the ER now, STILL NO CLEAR DIAGNOSIS. They are afraid to do a spinal tap/lumbar puncture at this juncture due to "risks outweighing the benefits". They are wanting me to wait until I see the neurologist on December 8th, the ER doc stating "Even if we do find out it's rat lungworm disease, it's been 3 months and there is nothing we can do to treat it." Though I know that Chinese Medicine has a protocol that could help me and I am in contact with the doc on the Wet Coast who invented it.
I trust everyone is doing the best that they can, given their access to their resources.
An upside is the paramedic, Andrea, who drove me in the ambulance at 6am this morning was super compassionate, very competent and really tried to talk the ER into testing me for meningitis or some other infection. She stepped "out of her lane" an was a tiger for me!
I love you and thank you for caring about my well being. The coconut wireless is already calling and I hope this can clarify anything different that you might have heard. To reiterate, there is no diagnosis or cause known yet and we will be keeping you updated via this site. Please check the Journal Entry section for further updates.
Aloha, Mahalo, Namaste.
Organizer and beneficiary
Allie Young
Organizer
Kula, HI
Alexandria Young
Beneficiary