- L
- G
- T
**Please note that the beneficiary listed on this GoFundMe is indeed Meili Tao. Jiya Taway is our other sister who is managing finances associated with the account.
___________________________________________________________________________________________
With every ounce of desperation I have, I am asking you to read my sister’s story. Meili Tao, my infectious, quick-witted, smart-ass sister (who I can't live with but can't live without) has a rare, progressive neurological disorder. It's called Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD). It's nickname is “The Suicide Disease.” CRPS is considered the most painful condition that exists on the planet. Meili is currently experiencing debilitating and inhuman pain every minute of every day but helping her stabilize her nervous system is something that can be done. With your help, we can make this happen.
CRPS is a neuroinflammatory condition causing the nervous and immune systems to malfunction sending constant pain signals to the brain. The McGill Pain Scale rated CRPS higher than childbirth, amputation, and cancer pain.
What Happened?
Meili describes her story best of all...
What is CRPS? CRPS is like hell on earth. It is as if I lit my feet on fire with no relief. There is no cure for it and I will have it for the rest of my life. I have always been an active person and good in sports. Having ADHD, I’m filled with energy and I’ve always had to consciously work on releasing my energy and winding down. I used to swim, later took up running, ate well, and took care of my body.
Back in 2016, I was dealing with major stress at work. During this time in my life, I became addicted to running because it was seemingly a healthy way of coping. It was a way of my releasing all of this anger and tension. But, I wasn’t listening to my body…for a while. Even in severe pain, I used to run up to 6 miles a day 5 times a week. I was in pain for months, but only went to the doctor when the pain reached a level where I could no longer walk.
My “go to” strategy of taping my foot with packing tape at work wasn’t cutting it. I just thought that the worst case scenario was that a few toes were broken. My worst fear was being immobile and I knew that going to the doctor would mean that I would be immobilized in some way. For an active person with ADHD, this is their worst nightmare. In 3/17, X-rays revealed both feet were filled with large bone spurs. The right foot’s first metatarsal was so badly damaged that deformity occurred. I had worn all of the cartilage down and was grinding bone on bone for God knows how long. The first of two surgeries involved reconstructing my first metatarsal. The second surgery needed, but yet to be completed, is the removal of the sesamoid bone on the bottom of my right foot. This bone is in the process of dying (Avascular necrosis - same family as gangrene), due to not receiving enough blood and oxygen. This is considered a serious health condition and warrants constant medical monitoring.
After my surgery, there was no progress and my pain was much worse. The pain was a burning pain, as if my foot was literally on fire. My foot was hypersensitive and felt and was ice cold to the touch. My foot couldn’t get need enough heat to warm it and relieve the pain.
I started wearing 2 to 3 pairs of socks and leg warmers and, whenever possible, wrapped my feet in a heating pad. The pain that I was having on my right foot traveled to the opposite extremity. At the same time, I felt like my body and mind were going nuts. I was having major heart palpitations and an irregular heart beat. My mind became foggy, I was exhausted, I had a hard time concentrating, was experiencing shortness of breath, an overactive bladder, and felt confused. But, most of all, I was in mind-numbing pain. In 12/17, I saw a pain specialist who immediately diagnosed me with CRPS.
Since this time, my sister has been virtually immobile. No matter how hard she tries, she is no longer able to work given that she cannot perform mentally or physically. Much of her life is now coping with being in debilitating constant pain. Her life has changed dramatically and she now needs support for basic life activities such as preparing meals, errands, and reminders to take her medications.
Meili's short-term disability has ended, she is battling “the system” for long-term disability approval, and has very little income. With Medi-Cal, she is fighting the system to get approved for the treatments and doctors she needs and has received virtually no care.
Meili has had 20 spinal nerve blocks, including ketamine and infusion treatments, physical therapy, and acupuncture. Doctors now recommend a double spinal cord stimulator in hopes of some pain relief, but this treatment is invasive and not a guarantee. Meili has been to a gastroenterologist, a cardiologist, an orthopedic surgeon, a podiatrist, an autoimmune doctor, a pain specialist, a physical therapist, a neurologist, an ENT, an ophthalmologist, and an acupuncturist to treat this condition and associated symptoms.
My sister’s life has changed. She is a different person. This realization has been a process. She has learned slowly that she is no longer able to do things alone and is in need of help. She feels isolated and alone, but with your help, she is not hopeless.
Most importantly, Meili is ardent in her faith in God. She is steadfast in her belief that whatever she is going through in this life is for a reason. She believes that she is on this earth to help others. Meili does get angry, mad, and wrestles with God. However, she is constant in her prayers, has a relationship with God and has been given the gifts of laughter and humor, and has a positive outlook in spite of it all.
HERE'S WHERE YOU COME IN...
My sister’s goal is remission. We need to act now, as her condition is progressive and is rapidly spreading to her hand, hip, and the opposite side of her body. Medically, Meili is in a Catch-22. She requires surgery on her foot to remove the offending necrotic bone, fuse the first metatarsal together, and remove scar tissue of the metatarsal, but her CRPS is so out-of-control at this time that doctors say that her nerves are physically incapable of handling these surgeries until her nervous system is stabilized.
HELPING MEILI STABILIZE HER NERVOUS SYSTEM IS SOMETHING THAT CAN BE DONE WITH YOUR HELP. Together, we can make this happen.
We are asking to raise funds for:
1. The Spero Clinic /Neurological Relief Clinic (https://thesperoclinic.com/services/) After exhaustive research, we have found that the Neurological Relief Clinic is treating this disease with rates as high as 80.2 %. This clinic, which is in Fayette, Arkansas, focuses on restoring the balance to the Central Nervous System, which assists the body with healing from within. It is currently the only center in the world that offers this type of rehabilitation. The treatment will be 12 weeks or longer and will cost approximately $36,000 USD for the treatment alone.
2. Flight to Arkansas - $600
3. Daily Transportation to and from Clinic - upwards of $1000
4. Medical equipment - Post-treatment, Meili will require a machine that assists with pain management and relief. Frequency Specific Microcurrent Machine - $2,000 USD https://frequencyspecific.com/
5. Supplements - upwards of a few hundred/month
6. Food and Accommodations during treatment - upwards of $5000
Meili’s body is in constant trauma. She is a loving, intelligent, strong-willed, a fighter, and a CRPS warrior. Her niece and nephew pound on her door because they can’t get enough of her and neither can we. We want YOU TO HELP HER live out the remainder of her life sharing the gifts that she has been given pain free.
Please help make this happen! Please spread the word and SHARE to your page!
___________________________________________________________________________________________
With every ounce of desperation I have, I am asking you to read my sister’s story. Meili Tao, my infectious, quick-witted, smart-ass sister (who I can't live with but can't live without) has a rare, progressive neurological disorder. It's called Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD). It's nickname is “The Suicide Disease.” CRPS is considered the most painful condition that exists on the planet. Meili is currently experiencing debilitating and inhuman pain every minute of every day but helping her stabilize her nervous system is something that can be done. With your help, we can make this happen.
CRPS is a neuroinflammatory condition causing the nervous and immune systems to malfunction sending constant pain signals to the brain. The McGill Pain Scale rated CRPS higher than childbirth, amputation, and cancer pain.
What Happened?
Meili describes her story best of all...
What is CRPS? CRPS is like hell on earth. It is as if I lit my feet on fire with no relief. There is no cure for it and I will have it for the rest of my life. I have always been an active person and good in sports. Having ADHD, I’m filled with energy and I’ve always had to consciously work on releasing my energy and winding down. I used to swim, later took up running, ate well, and took care of my body.
Back in 2016, I was dealing with major stress at work. During this time in my life, I became addicted to running because it was seemingly a healthy way of coping. It was a way of my releasing all of this anger and tension. But, I wasn’t listening to my body…for a while. Even in severe pain, I used to run up to 6 miles a day 5 times a week. I was in pain for months, but only went to the doctor when the pain reached a level where I could no longer walk.
My “go to” strategy of taping my foot with packing tape at work wasn’t cutting it. I just thought that the worst case scenario was that a few toes were broken. My worst fear was being immobile and I knew that going to the doctor would mean that I would be immobilized in some way. For an active person with ADHD, this is their worst nightmare. In 3/17, X-rays revealed both feet were filled with large bone spurs. The right foot’s first metatarsal was so badly damaged that deformity occurred. I had worn all of the cartilage down and was grinding bone on bone for God knows how long. The first of two surgeries involved reconstructing my first metatarsal. The second surgery needed, but yet to be completed, is the removal of the sesamoid bone on the bottom of my right foot. This bone is in the process of dying (Avascular necrosis - same family as gangrene), due to not receiving enough blood and oxygen. This is considered a serious health condition and warrants constant medical monitoring.
After my surgery, there was no progress and my pain was much worse. The pain was a burning pain, as if my foot was literally on fire. My foot was hypersensitive and felt and was ice cold to the touch. My foot couldn’t get need enough heat to warm it and relieve the pain.
I started wearing 2 to 3 pairs of socks and leg warmers and, whenever possible, wrapped my feet in a heating pad. The pain that I was having on my right foot traveled to the opposite extremity. At the same time, I felt like my body and mind were going nuts. I was having major heart palpitations and an irregular heart beat. My mind became foggy, I was exhausted, I had a hard time concentrating, was experiencing shortness of breath, an overactive bladder, and felt confused. But, most of all, I was in mind-numbing pain. In 12/17, I saw a pain specialist who immediately diagnosed me with CRPS.
Since this time, my sister has been virtually immobile. No matter how hard she tries, she is no longer able to work given that she cannot perform mentally or physically. Much of her life is now coping with being in debilitating constant pain. Her life has changed dramatically and she now needs support for basic life activities such as preparing meals, errands, and reminders to take her medications.
Meili's short-term disability has ended, she is battling “the system” for long-term disability approval, and has very little income. With Medi-Cal, she is fighting the system to get approved for the treatments and doctors she needs and has received virtually no care.
Meili has had 20 spinal nerve blocks, including ketamine and infusion treatments, physical therapy, and acupuncture. Doctors now recommend a double spinal cord stimulator in hopes of some pain relief, but this treatment is invasive and not a guarantee. Meili has been to a gastroenterologist, a cardiologist, an orthopedic surgeon, a podiatrist, an autoimmune doctor, a pain specialist, a physical therapist, a neurologist, an ENT, an ophthalmologist, and an acupuncturist to treat this condition and associated symptoms.
My sister’s life has changed. She is a different person. This realization has been a process. She has learned slowly that she is no longer able to do things alone and is in need of help. She feels isolated and alone, but with your help, she is not hopeless.
Most importantly, Meili is ardent in her faith in God. She is steadfast in her belief that whatever she is going through in this life is for a reason. She believes that she is on this earth to help others. Meili does get angry, mad, and wrestles with God. However, she is constant in her prayers, has a relationship with God and has been given the gifts of laughter and humor, and has a positive outlook in spite of it all.
HERE'S WHERE YOU COME IN...
My sister’s goal is remission. We need to act now, as her condition is progressive and is rapidly spreading to her hand, hip, and the opposite side of her body. Medically, Meili is in a Catch-22. She requires surgery on her foot to remove the offending necrotic bone, fuse the first metatarsal together, and remove scar tissue of the metatarsal, but her CRPS is so out-of-control at this time that doctors say that her nerves are physically incapable of handling these surgeries until her nervous system is stabilized.
HELPING MEILI STABILIZE HER NERVOUS SYSTEM IS SOMETHING THAT CAN BE DONE WITH YOUR HELP. Together, we can make this happen.
We are asking to raise funds for:
1. The Spero Clinic /Neurological Relief Clinic (https://thesperoclinic.com/services/) After exhaustive research, we have found that the Neurological Relief Clinic is treating this disease with rates as high as 80.2 %. This clinic, which is in Fayette, Arkansas, focuses on restoring the balance to the Central Nervous System, which assists the body with healing from within. It is currently the only center in the world that offers this type of rehabilitation. The treatment will be 12 weeks or longer and will cost approximately $36,000 USD for the treatment alone.
2. Flight to Arkansas - $600
3. Daily Transportation to and from Clinic - upwards of $1000
4. Medical equipment - Post-treatment, Meili will require a machine that assists with pain management and relief. Frequency Specific Microcurrent Machine - $2,000 USD https://frequencyspecific.com/
5. Supplements - upwards of a few hundred/month
6. Food and Accommodations during treatment - upwards of $5000
Meili’s body is in constant trauma. She is a loving, intelligent, strong-willed, a fighter, and a CRPS warrior. Her niece and nephew pound on her door because they can’t get enough of her and neither can we. We want YOU TO HELP HER live out the remainder of her life sharing the gifts that she has been given pain free.
Please help make this happen! Please spread the word and SHARE to your page!