Eric's Emergency Medical Fund
CRPS The most painful disease known to man
'What does it feel like? Well, if you had it in your hand, imagine your hand was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. Now imagine it both hands, arms, legs, feet; well, you get the picture. I sometimes sit there and am amazed that no one else can see the flames shooting off of my body.
The second component to CRPS is what is called Allodynia. Allodynia is an extreme sensitivity to touch, sound, and/or vibration. Imagine that same hand now has the skin all burned off and is completely raw. Next, rub some salt on top of it and then rub some sandpaper on top of that! THAT is Allodynia.'[1]
Sometimes it is difficult for people to imagine the pain that affects those with CRPS. Have you ever had a headache that just won’t go away? You take some pain relievers, but it still gnaws at you. It’s hard to concentrate. Your temples are THROBBING. The small noises that your family is making in the next room are magnified by the piercing pain in your head. Your nerves are wearing thin and you're more irritable than usual. Ok, so maybe a little nap is in order. You turn off the lights and doze off for a couple of hours and when you wake up you’re magically refreshed and headache free. Imagine that the pain you were feeling is beyond any pain you’ve felt before. (Perhaps it could be compared to the birth of a child, an amputation, or terminal cancer). Now consider that when someone has chronic pain, they can’t just wake up from it. It is there, day in and day out. You can’t hide from the pain. You can’t trick the pain. Somehow, you have to manage the pain and try to function somewhat normally. You have to keep going, no matter how much pain you’re feeling.
Even though CRPS /RSD is listed as the most painful disease known to man, there is still so much that doctors don’t understand about the disease. Another Wellsboro resident recalls what it was like to live with CRPS /RSD “I know the pain and I know how people judge you because they can't always see it. When I was diagnosed, nobody in Wellsboro had heard of it. I had to get notes explaining RSD from doctors in Williamsport to give to the school because nobody believed or understood what I was telling them.” Thankfully, she is now in remission.
The effects of chronic pain go way beyond the pain itself. Chronic pain is linked to sleep disturbances, depression, irritability, and decreased cognitive function. Especially for someone who is as self-sufficient and capable as Eric, the thought of not being able to do what he once could is hard to handle. Chronic pain is also isolating for those suffering. Going to family functions might seem like an endless stream of disapproving looks and questions. Maintaining healthy relationships becomes much harder for those in pain.
Many people are familiar with Howard Hughes. The wealthy entrepreneur is most well known as a director and prominent name in Aviation. History has painted this eccentric business man and inventor as an addict, but 70 years later we are able to look back at detailed documents and apply new knowledge of pain to his case. Hughes suffered from intractable pain, which is a term that doctors only recently named.
Intractable pain is a severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated, usually with opioids and/or interventional procedures.[2] This form of chronic pain is reserved for those severe chronic pain patients whose pain is severe, incapacitating, constant, incurable, and interferes with biologic functions including sleep, eating, ambulation, and social interaction. [3]
In his case, injuries were the result of a nearly fatal plane crash. He suffered a long list of broken bones and burns which resulted in pain that would last the rest of his life. Historians now say that it is very likely that Howard Hughes suffered from CRPS as a result of his injuries. All those years ago, he was written off an addict. Even many of his notable quirks could have been easily explained by the current medical description of CRPS. Public perception of pain is no further ahead than it was then. Unfortunately, neither is modern medicine. Actually, research into the life and death of Hughes was in part to research the effects of his 30 year opioid use. Read the whole article here: Howard Hughes Pseudoaddiction .
With all of our medical advancements and acceptance of certain diseases, we STILL write off those diseases that we don’t understand. Worse still, we write off the people who are plagued by these misunderstood maladies. It is so easy to stare at the floor and shake our heads. It could happen to anyone, but never to you! People look at those who suffer with some vague disapproval, as if they could have somehow prevented their disease; as if somehow they are not trying hard enough to push past their pain and put on a smile for everyone.
It’s bad enough that those suffering from this horrible disease have little to look forward to in the way of medical advancements. The way the Social Security Disability system and Workman’s Compensation handle, or rather mishandle, chronic pain conditions is atrocious. Eric, who now often has to walk with a cane, has already been turned down for SSD twice. The second time he even requested the process be expedited because of the foreclosure of his home, but they denied him.
The first thing we need to focus on is the immediate need of keeping the home that Eric paid faithfully on for many years. He owes only 20% of the home's value. It is the home where he raised his kids and it will provide a stable environment for his youngest son, who spends most of his time with Eric. He has done everything possible to try to keep his home, but the small amount of money he brings in is not enough to live on and pay the mortgage.
Some of you know Eric Bieber, some of you do not. What is amazing is that several of the donors to his campaign have never even met Eric. I’d like to tell you what I know about my brother. We were raised in a home with love, values, and two parents who worked hard to provide for their family. Eric has a strong will, and will stand up for who and what he believes in. He’s a wonderful father, and always encouraged his children to pursue things that mattered to them. I can’t say I know a more dedicated father; a harder worker; a more trustworthy friend. The Eric I know always chopped his own firewood, hunted with family and friends, taxied the 3 kids to various activities, and planted a garden every year. He built a career as a successful salesman and was well liked by the business owners. This was all cut short with an injury gone wrong.
CRPS began for Eric after a work-related hernia operation changed his life forever. The moment he came out of anesthesia, he knew something was wrong. He was drenched in sweat and had pain from his incision down to his knee. As with many cases, his symptoms continued after the surgery and even worsened. Six years later CRPS has traveled down his entire leg and into his foot. Eric saw more than 10 doctors over the first year and a half before he finally got a diagnosis. It is hard to imagine spending that long fighting this extreme pain alone, with no diagnosis to name. Still, family doctors and even many specialists don’t even know CRPS exists. Recommendations by these first couple of doctors almost always recommend the use of ice, though ice can actually make the problem worse. Many medical doctors aren’t even taught about CRPS in school, because it was once thought to be extremely rare. Clearly, more awareness needs to be brought to this disease if medical doctors don’t even know it exists!
It’s been over 6 years since that initial surgery that changed Eric’s life. He manages his pain as well as he can, but it is an ongoing battle. Eric has not gotten long lasting relief from any treatment so far. He has done acupuncture, nerve blocks, Ketamine treatments, Lidocaine treatments, and more. Unfortunately, the later the diagnosis, the smaller the chance for remission, but we can always be hopeful. Eric’s pain prevents him from being able to work any traditional job. If any funds were to be raised over our goal of the $30,000 to pay off the house, the remainder would be used to secure future living expenses for Eric were paid, as well as continuing alternative treatments in hope of finding relief. I know how strong Eric is. I don’t know if I would be as strong as him if I were in the same situation. I hope I never have to find out, but in the meantime I will do as much as I can to keep the bank from selling his home.
We know that everyone has their own life and their own problems. Some of you suffer from pain as well, or from other disabilities. The reason we need your help now is that his house is going to be sold. The date that the house is going up for Sheriff’s Sale is December 14, right before Christmas. Eric has helped himself as much as he can. His former employer and the Social Security that he paid into for so long have failed him. Now I’m asking for your help. There is no amount too small; we are grateful for $1, $5, or whatever you’re able to do. Feel free to give anonymously. If you’re not able to donate, please post his gofundme link to Facebook. https://www.gofundme.com/helpsaveericshouse
We can only hope that we can bring awareness to this disease and the people who suffer from it. Hopefully, awareness will lead to research, and to knowledge, and one day to a cure. For now, we can just try to look at everyone who suffers with a disability without judgment, but with empathy.
The truth of my experience is that we are all a lot more alike than we are different.
----Anne Lamott
[1] © 2016 American RSDHope, Keith Orsini, http://www.rsdhope.org/what-does-crps-feel-like.html
[2]https://en.wikipedia.org/wiki/Intractable_pain
[3]http://www.practicalpainmanagement.com/resources/howard-hughes-pseudoaddiction?page=0,1
'What does it feel like? Well, if you had it in your hand, imagine your hand was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. Now imagine it both hands, arms, legs, feet; well, you get the picture. I sometimes sit there and am amazed that no one else can see the flames shooting off of my body.
The second component to CRPS is what is called Allodynia. Allodynia is an extreme sensitivity to touch, sound, and/or vibration. Imagine that same hand now has the skin all burned off and is completely raw. Next, rub some salt on top of it and then rub some sandpaper on top of that! THAT is Allodynia.'[1]
Sometimes it is difficult for people to imagine the pain that affects those with CRPS. Have you ever had a headache that just won’t go away? You take some pain relievers, but it still gnaws at you. It’s hard to concentrate. Your temples are THROBBING. The small noises that your family is making in the next room are magnified by the piercing pain in your head. Your nerves are wearing thin and you're more irritable than usual. Ok, so maybe a little nap is in order. You turn off the lights and doze off for a couple of hours and when you wake up you’re magically refreshed and headache free. Imagine that the pain you were feeling is beyond any pain you’ve felt before. (Perhaps it could be compared to the birth of a child, an amputation, or terminal cancer). Now consider that when someone has chronic pain, they can’t just wake up from it. It is there, day in and day out. You can’t hide from the pain. You can’t trick the pain. Somehow, you have to manage the pain and try to function somewhat normally. You have to keep going, no matter how much pain you’re feeling.
Even though CRPS /RSD is listed as the most painful disease known to man, there is still so much that doctors don’t understand about the disease. Another Wellsboro resident recalls what it was like to live with CRPS /RSD “I know the pain and I know how people judge you because they can't always see it. When I was diagnosed, nobody in Wellsboro had heard of it. I had to get notes explaining RSD from doctors in Williamsport to give to the school because nobody believed or understood what I was telling them.” Thankfully, she is now in remission.
The effects of chronic pain go way beyond the pain itself. Chronic pain is linked to sleep disturbances, depression, irritability, and decreased cognitive function. Especially for someone who is as self-sufficient and capable as Eric, the thought of not being able to do what he once could is hard to handle. Chronic pain is also isolating for those suffering. Going to family functions might seem like an endless stream of disapproving looks and questions. Maintaining healthy relationships becomes much harder for those in pain.
Many people are familiar with Howard Hughes. The wealthy entrepreneur is most well known as a director and prominent name in Aviation. History has painted this eccentric business man and inventor as an addict, but 70 years later we are able to look back at detailed documents and apply new knowledge of pain to his case. Hughes suffered from intractable pain, which is a term that doctors only recently named.
Intractable pain is a severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated, usually with opioids and/or interventional procedures.[2] This form of chronic pain is reserved for those severe chronic pain patients whose pain is severe, incapacitating, constant, incurable, and interferes with biologic functions including sleep, eating, ambulation, and social interaction. [3]
In his case, injuries were the result of a nearly fatal plane crash. He suffered a long list of broken bones and burns which resulted in pain that would last the rest of his life. Historians now say that it is very likely that Howard Hughes suffered from CRPS as a result of his injuries. All those years ago, he was written off an addict. Even many of his notable quirks could have been easily explained by the current medical description of CRPS. Public perception of pain is no further ahead than it was then. Unfortunately, neither is modern medicine. Actually, research into the life and death of Hughes was in part to research the effects of his 30 year opioid use. Read the whole article here: Howard Hughes Pseudoaddiction .
With all of our medical advancements and acceptance of certain diseases, we STILL write off those diseases that we don’t understand. Worse still, we write off the people who are plagued by these misunderstood maladies. It is so easy to stare at the floor and shake our heads. It could happen to anyone, but never to you! People look at those who suffer with some vague disapproval, as if they could have somehow prevented their disease; as if somehow they are not trying hard enough to push past their pain and put on a smile for everyone.
It’s bad enough that those suffering from this horrible disease have little to look forward to in the way of medical advancements. The way the Social Security Disability system and Workman’s Compensation handle, or rather mishandle, chronic pain conditions is atrocious. Eric, who now often has to walk with a cane, has already been turned down for SSD twice. The second time he even requested the process be expedited because of the foreclosure of his home, but they denied him.
The first thing we need to focus on is the immediate need of keeping the home that Eric paid faithfully on for many years. He owes only 20% of the home's value. It is the home where he raised his kids and it will provide a stable environment for his youngest son, who spends most of his time with Eric. He has done everything possible to try to keep his home, but the small amount of money he brings in is not enough to live on and pay the mortgage.
Some of you know Eric Bieber, some of you do not. What is amazing is that several of the donors to his campaign have never even met Eric. I’d like to tell you what I know about my brother. We were raised in a home with love, values, and two parents who worked hard to provide for their family. Eric has a strong will, and will stand up for who and what he believes in. He’s a wonderful father, and always encouraged his children to pursue things that mattered to them. I can’t say I know a more dedicated father; a harder worker; a more trustworthy friend. The Eric I know always chopped his own firewood, hunted with family and friends, taxied the 3 kids to various activities, and planted a garden every year. He built a career as a successful salesman and was well liked by the business owners. This was all cut short with an injury gone wrong.
CRPS began for Eric after a work-related hernia operation changed his life forever. The moment he came out of anesthesia, he knew something was wrong. He was drenched in sweat and had pain from his incision down to his knee. As with many cases, his symptoms continued after the surgery and even worsened. Six years later CRPS has traveled down his entire leg and into his foot. Eric saw more than 10 doctors over the first year and a half before he finally got a diagnosis. It is hard to imagine spending that long fighting this extreme pain alone, with no diagnosis to name. Still, family doctors and even many specialists don’t even know CRPS exists. Recommendations by these first couple of doctors almost always recommend the use of ice, though ice can actually make the problem worse. Many medical doctors aren’t even taught about CRPS in school, because it was once thought to be extremely rare. Clearly, more awareness needs to be brought to this disease if medical doctors don’t even know it exists!
It’s been over 6 years since that initial surgery that changed Eric’s life. He manages his pain as well as he can, but it is an ongoing battle. Eric has not gotten long lasting relief from any treatment so far. He has done acupuncture, nerve blocks, Ketamine treatments, Lidocaine treatments, and more. Unfortunately, the later the diagnosis, the smaller the chance for remission, but we can always be hopeful. Eric’s pain prevents him from being able to work any traditional job. If any funds were to be raised over our goal of the $30,000 to pay off the house, the remainder would be used to secure future living expenses for Eric were paid, as well as continuing alternative treatments in hope of finding relief. I know how strong Eric is. I don’t know if I would be as strong as him if I were in the same situation. I hope I never have to find out, but in the meantime I will do as much as I can to keep the bank from selling his home.
We know that everyone has their own life and their own problems. Some of you suffer from pain as well, or from other disabilities. The reason we need your help now is that his house is going to be sold. The date that the house is going up for Sheriff’s Sale is December 14, right before Christmas. Eric has helped himself as much as he can. His former employer and the Social Security that he paid into for so long have failed him. Now I’m asking for your help. There is no amount too small; we are grateful for $1, $5, or whatever you’re able to do. Feel free to give anonymously. If you’re not able to donate, please post his gofundme link to Facebook. https://www.gofundme.com/helpsaveericshouse
We can only hope that we can bring awareness to this disease and the people who suffer from it. Hopefully, awareness will lead to research, and to knowledge, and one day to a cure. For now, we can just try to look at everyone who suffers with a disability without judgment, but with empathy.
The truth of my experience is that we are all a lot more alike than we are different.
----Anne Lamott
[1] © 2016 American RSDHope, Keith Orsini, http://www.rsdhope.org/what-does-crps-feel-like.html
[2]https://en.wikipedia.org/wiki/Intractable_pain
[3]http://www.practicalpainmanagement.com/resources/howard-hughes-pseudoaddiction?page=0,1
Organizer and beneficiary
Lee Bieber
Organizer
Wellsboro, PA
Eric Bieber
Beneficiary