Help Michelle fight CRPS/RSD
Donation protected
Dear family and friends,
On July 10, 2008 I was working in a classroom teaching early intervention for children diagnosed with autism. A student bit my right hand and left arm in an attempt to avoid task completion. After a visit to my primary physician, three emergency room visits, a consult with a hand surgeon, and an infections disease specialist, I was admitted to the hospital and treated for an infection. Upon discharge a week later, I had pain, swelling, bruising, and sensitivity in the right hand and limited use or function of it. I began aggressive physical therapy in the following weeks which resulted in an increase of pain in the hand and right arm. Four months later I was diagnosed with a chronic neurological disease known as Complex Regional Pain Syndrome (CRPS), also recognized as Reflex Sympathetic Dystrophy. CRPS is characterized by severe continuous burning pain, pathological changes in the bone and skin, swelling, sensitivity to touch, changes in skin temperature, decreased mobility, spasms, and muscle atrophy. My CRPS spread rather quickly and now I have severe unrelenting pain 24/7 affecting both legs and arms. Additionally, I have a number of conditions and symptoms that often coexist with CRPS, irregular heart rate, chest pain, dizziness, syncope, orthostatic hypotension, bone fractures, heat/cold intolerance, debilitating headaches, and gastrointestinal issues. The pain levels score higher than unmedicated childbirth and digit amputation on the McGill pain scale.
I have been blessed with wonderful doctors and other medical professionals who have always tried their best to keep me as comfortable and healthy as possible. There is no cure for CRPS and at this point in time I have gone through almost all of the treatment options. Round the clock narcotics, 30 plus medications, hyperbaric oxygen, hundreds of nerve blocks, and countless hours of physical therapy. While some of these treatments have been helpful nothing has given me back a normal life without pain. However I have had great results with outpatient ketamine/lidocaine intravenous infusions, but they are difficult to get insurance to approve and even more difficult to schedule. For the first time in years I have real hope.
After waiting three years to see a neurologist who specializes in RSD/CRPS I have been given the opportunity to be treated with inpatient ketamine. Starting January 21, 2014 I will be admitted to Hahnemann University Hospital in Philadelphia and receiving low dose ketamine continuously for 5 days. I will be in the ICU and closely monitored by an excellent team of nurses and physicians who specialize in CRPS. After a week in the hospital, I will discharged and allowed to return home but will have to return to Philadelphia every two weeks for outpatient booster infusions to continue the effects of ketamine. Many CRPS patients gets months of pain relief and some even go into remission. Of course, that is my goal!
The hospital has already told me that my insurance will not cover all of the costs of the treatment and we are unsure if workers compensation will cover any of it given it is an elective procedure and out of NY state. This means I could be responsible for thousands of dollars out of pocket, financial hardship I know I cannot take on myself. Travel expenses alone are already too much to handle. However I refuse to give up and miss out on this awesome and potentially life changing treatment opportunity.
So many of you, friends and family, have asked what you can do to help, so with some encouragement and final push from my doctor, I have created this page. My goal is to raise enough money to pay for these medical and travel expenses to get to Philadelphia and rid my body of this disease.
I appreciate that times are tough for many and that so many are in similar circumstances. If you are able to donate, no matter how small the amount, that would be truly wonderful and life changing for myself and family. If you would like to help, but are unable to donate, please share this page with your friends, family, and coworkers:anyone who may be willing to help. And as always, prayers and good thoughts are just as valuable as a dollar.
With thanks and love always,
Michelle deLeonard
*Any and all excess money raised will be redistributed to research funding for RSD/CRPS
On July 10, 2008 I was working in a classroom teaching early intervention for children diagnosed with autism. A student bit my right hand and left arm in an attempt to avoid task completion. After a visit to my primary physician, three emergency room visits, a consult with a hand surgeon, and an infections disease specialist, I was admitted to the hospital and treated for an infection. Upon discharge a week later, I had pain, swelling, bruising, and sensitivity in the right hand and limited use or function of it. I began aggressive physical therapy in the following weeks which resulted in an increase of pain in the hand and right arm. Four months later I was diagnosed with a chronic neurological disease known as Complex Regional Pain Syndrome (CRPS), also recognized as Reflex Sympathetic Dystrophy. CRPS is characterized by severe continuous burning pain, pathological changes in the bone and skin, swelling, sensitivity to touch, changes in skin temperature, decreased mobility, spasms, and muscle atrophy. My CRPS spread rather quickly and now I have severe unrelenting pain 24/7 affecting both legs and arms. Additionally, I have a number of conditions and symptoms that often coexist with CRPS, irregular heart rate, chest pain, dizziness, syncope, orthostatic hypotension, bone fractures, heat/cold intolerance, debilitating headaches, and gastrointestinal issues. The pain levels score higher than unmedicated childbirth and digit amputation on the McGill pain scale.
I have been blessed with wonderful doctors and other medical professionals who have always tried their best to keep me as comfortable and healthy as possible. There is no cure for CRPS and at this point in time I have gone through almost all of the treatment options. Round the clock narcotics, 30 plus medications, hyperbaric oxygen, hundreds of nerve blocks, and countless hours of physical therapy. While some of these treatments have been helpful nothing has given me back a normal life without pain. However I have had great results with outpatient ketamine/lidocaine intravenous infusions, but they are difficult to get insurance to approve and even more difficult to schedule. For the first time in years I have real hope.
After waiting three years to see a neurologist who specializes in RSD/CRPS I have been given the opportunity to be treated with inpatient ketamine. Starting January 21, 2014 I will be admitted to Hahnemann University Hospital in Philadelphia and receiving low dose ketamine continuously for 5 days. I will be in the ICU and closely monitored by an excellent team of nurses and physicians who specialize in CRPS. After a week in the hospital, I will discharged and allowed to return home but will have to return to Philadelphia every two weeks for outpatient booster infusions to continue the effects of ketamine. Many CRPS patients gets months of pain relief and some even go into remission. Of course, that is my goal!
The hospital has already told me that my insurance will not cover all of the costs of the treatment and we are unsure if workers compensation will cover any of it given it is an elective procedure and out of NY state. This means I could be responsible for thousands of dollars out of pocket, financial hardship I know I cannot take on myself. Travel expenses alone are already too much to handle. However I refuse to give up and miss out on this awesome and potentially life changing treatment opportunity.
So many of you, friends and family, have asked what you can do to help, so with some encouragement and final push from my doctor, I have created this page. My goal is to raise enough money to pay for these medical and travel expenses to get to Philadelphia and rid my body of this disease.
I appreciate that times are tough for many and that so many are in similar circumstances. If you are able to donate, no matter how small the amount, that would be truly wonderful and life changing for myself and family. If you would like to help, but are unable to donate, please share this page with your friends, family, and coworkers:anyone who may be willing to help. And as always, prayers and good thoughts are just as valuable as a dollar.
With thanks and love always,
Michelle deLeonard
*Any and all excess money raised will be redistributed to research funding for RSD/CRPS
Organizer
Michelle de Leonard
Organizer
Lake Ronkonkoma, NY
