I was diagnosed 8 months ago with a painful bladder disease called ( IC ) and yes I can honestly say I am one of the millions that suffer from pain everyday. With the many abusers out there it is getting much harder to be perscribed pain meds by Dr's. So sadley millions of Americans are suffering without any health insuance and can't afford to even see a Dr. We have the right to be treated fairly no matter what the reason is. God Bless and may he be on OUR SIDE with this matter. Thanks.
What is in this bill? You don't say. Some of the pain care doctors out there are just drug dealers in white coats. Their medications are as devastating as street drugs, they are street drugs. Yes I was and still am in pain with 6 herniated disc and radiculopathies but while on the pain medication I was dripping sweat,shaking and freezing cold at the same time. My doctor ignored my suffering and kept prescribing. I had Opiod Induced Hyperanalgesic Syndrome. Look it up it is terrible.
So, you had all these symptoms, and you blame the DR? he kept prescribing, but you kept taking them without seeing another DR? DRs are NOT gods, they need to be questioned, and if they won't listen/answer, find another! Life's too short to deal with DRs with "god" complexes. I have RSD from the waist down, and had a few of these. THINK FOR YOURSELF! You'll live longer.
If you click on the link to the petition, there is a fairly accurate summary of the bill within the petition. For the sake of brevity and aesthetics I kept out a detailed description of the bill itself from the video, but if you want to know more just click the link.
I have been living with chronic pain for 3 years now.Two of those years without any medication at all.Cause the Dr. I was seeing dropped me when I lost my job and my insurance.I blame my job loss on him because he had me on meds that made me really tired.I broke the tibia & fibula in my right knee over 4 years ago.. and have 2 screws in there.Everyday I feel like curling up and dying.If I could curl that leg.
People that do not have chronic pain just don't know the truth. It's so easy for them to write it off as YOU must be nutz!!!
Here's what you tell them...put a spring type close-pin on their little figure and go about their daily business...see how long they can leave it on?! Then tell them not too - because YOU can't take yours off...
Thank you so much for bringing this to our attention. I own an online Fibromyalgia support group and will be forwarding the email that I received to it. We have about 200 members so hopefully they'll sign and also send it to all of their family and friends. I've been suffereing from Fibromyalgia for around 25 years. "The first 10 of those years I went undiagnosed. Once the Dr told me what I had I sat in his office and cried and cried, that I had an answer.
Thank you for taking the time to help bring this issue to light. I have lived to struggles of being turned away by doctors and labeld horrible things just because I am in pain... every day...all day. Thank you!
I am definitely in!!! Thank you so much for advocating this issue on all us chronic pain sufferers. The officials, the public, and even doctors need to be re-educated about chronic pain and pain medications. I am so sick of being put down for taking pain meds, like I'm supposed to be strong and take the pain, or that the meds are not 'good' for me. And the pain is? It's a joke! About time - keep up the good work!!
This video expresses the need for research and education on the prevelance of chronic pain. If those of us who suffer with untreated chronic pain every day don't speak up, who is going to help us get back into the mainstream of life, help us be functional, to work, care for our families and stop suffering in silence. Shout from the roof tops, spread information in what people can do to help the Pain-Foundation spread the word about this epidemic.
I've had Burning Mouth Syndrome for over 2 years.A number of treatments have not reduced the pain.I need dental work done and every time I have a procedure, even a cleaning ,the pain kicks into high gear.
This video did not speak of how to solve the problem. Just because someone is treated does not solve the problem. Yes, people need help for chronic pain, but what treatment or drug will help. My mother has been on a pain patch that has done her no good. Money is not the problem, what drug will help, surgery is no longer in the books, the doctor isn't collecting any more money, but she did purchase a scooter.
Make sure to visit our website and view our publication entitled "Treatment Options." To answer your question, each person is different - what works for one person, may not necessarily work the same way for another.
Educating yourself on the treatments available for your pain and advocating on behalf of yourself or your loved one with your medical team are essential in successfully navigating this journey with pain.
I live in pain 24/7 from multiple sources. I do not have adequate pain meds. Not enough to help me function in any kind of way.
Drs don't want to treat pain, or if they do, they will usually write a prescription for such a small amount of pain relief that it doesn't even help enough to take the edge off.
And most will not give us inything for break through pain.
The ER is useless, if a pain patient comes in they are called "Users"
I agree with you all the way L.J. My dr just doesnt want to know about my pain - he wont prescribe anything decent to help with the debilitating pain. I have been told to exersise more - that will help with the pain, he said. It would be nice, if only it wasnt so painful to move! And as far as the ER - they are a joke! I actually had a "so-called" dr ask me why i had pain! He didnt believe in fibromyalgia & all that comes with it, so i was sent home with a couple of paracetamol.
Yeah, right. Exercise can only make the pain of RSD worse. Most Dr don't know anything about RSD. I do get some pain meds, but not enough to help me function in any kind of way.
Can you find anyther Dr. Have you tried talking to a Rheumatologist or a Neurologist?
ITs criminal how we are expected to live in agony, and they don't even try to understand or to learn that we do need help with the pain.
RSD is our beast we are fighting. We need a team of Drs. to help fight the beast. If our Drs don't want to be on our team then we need to find one's who do. I am always reminding mine of this. I was told that I am in later 2nd stage and doomed. My Dr. will never tell another patient that again. Rather than find a new Dr. I wanted to prove him wrong! So I gave him a course in mind over matter and RSD.
When I go to the Dr. I will demonstrate the feel of my pain on him. He doesn't like that. If it is burning in my hands,feet and back I tell him think of holding your hand over a hot stove til you can't take anymore. If it is tight back muscle I make him turn around and I pinch his upper back and say it feels like that do you understand? in a duh sorta way I will say it's like having the flu ALL the time. He let's me so why not. If only I could get family together and do that so they could get it
I've been fighting chronic pain for almost 15 years. It took me 10 years to get anything to help control the pain. Having more than one underlying condition causing my pain, it is doubly difficult to find any one doc to treat me on all fronts.
Being chronically undermedicated makes it all that much worse.
Thanks for speaking up and I will be going to my Senator's Web site. If I can help in this cause, please let me know.
Thank you so very much to all that have made this petition possible, it's needed so badly ! I've been shunned by first one and then another pirmary care Dr' for being ignorant and without compassion about my chronic pain from PN , I suffer 24/7 ,and to be told that I don't need my pain meds and to throw them out is a travesty ! Thankfully , I have a pain Dr that manages my pain with care and compassion .
Many thanks for your initiative to help pain patients. With the current climate of the government interference in pain treatment I can only hope that this bill passes and those that we care about may receive the treatment that they need. Without the DEA telling the Dr.s how to treat medical issues. It is appauling to us that any non medical agency has taken almost total control or american healthcare and are intimidating physicians so that they are afraid to prescirbe what they feel necessary.
Thank you for being and advocate for pain management! I have Dercum's Disease. It's like having lymphatic cancer without the cancer. It has no end and no cure. Normal pain meds don't treat the pain and most doctors won't acknowledge the disease. I am tired of squandering my life away in my room because because of the continuous pain in my body. I have over 145 lbs of tumors in my lymphatics and can't get help! I can't get anyone to listen to me without insulting me or my intellegence.
Thank you for making this video. Since a "simple" wrist surgery in Nov 2005, I have had Complex Regional Pain Syndrome. Unfortunately, mine was a California Workers Comp case, and I went nearly 2 years without necessary care; it spread quickly to all 4 limbs and back. Though I worked successfully for over a year, Apple refused to negotiate accommodations this year and terminated my employment.
I live in constant, excruciating pain, like burning alive. Undertreated? Understatement.
BTW, just because you have signed the petition, don't stop there. Please go to your senators' web sites and write them a personal letter about this, particularly if you or someone you love suffers from chronic pain. Thanks.
I to had surgery on my left wrist and developed RSDS/CRPS and am now battling the monster all over my body. I call it my house decease because I have had it for about 7yrs now and every time I go to the Dr. they discover something new. I just wanted you to know your not alone.
The Drs don't even believe that RSD/CRPS can travel from the original site. I have a hard time trying to teach them. And they do not understand the pain. Nor do they want to geive us appropiiate pain meds.
I have RSD II and I fully understand how much this pain can destroy. My DRs told me my pain was not real it was in my head until the diagnostic reports confirmed that it was not in my head. Little do people know that RSD is the worst pain known to man and medicine. I can honsetly say I know your pain and how it can make you feel. Ms. Lin I invite you to keep intouch with a fellow RSD sufferer.
How are you doing today? Do you ever get some time when the pain is less. I know you and I will never be pain free,but sometimes it can be a littlle less and those times are wonderul. Too bad they don't last.
If those of us who suffer from chronic pain don't speak up, then how are the officials going to accurately learn how prevelent chronic pain is and come up with solutions that put us back into main
Thank you guys for starting this petition and brining the Act to our attention. I know most pain sufferers are exhausted and would not be in a position to put together a petition like this. I am passing this on to all that I know, including the president of the Arthritis Foundation Association in my state in hopes that they will circulate the petition.
Thanks so very much, to all involved in this! Chronic pain is a destructive monster! We battle every day to get by. 6 years of daily pain, for both of us,14operations in 6 years between us.We've spent our savings and must sell our home in this market. You shouldn't have to loose everything because of a disease or chronic pain from cancer radiation treatment. It's hard for 1 person to deal with Chronic Pain, but is disasterous for a couple! We struggle with daily, simple things! We need HELP!!
I have lived with chronic pain/illness for the last 12 years of my life and I am now in the process of divorce thanks to my illness. After losing my husband, I'll also be losing the health insurance that his work provided for me. Losing my husband is punishment enough, not being able to get the treatment I need to make my life worth living is inhumane. Please support chronic pain sufferers, don't make their lives worse.
Under HIPAA, if your husbands group coverage covered you, you must be accepted without preexisting conditions. DO NOT let your coverage lapse, make sure the language is in the divorce agreement.. You didn't lose your husband, your husband left you when the for worse part of marriage happened. You will be better off living alone in peace than feeling like a damaged package. You are still a whole person who has pain...remember that!
Thanks guys, I have gotten a lawyer and I am going to be able to secure Cobra coverage. It only lasts three years, but at least that's three years with coverage than without.
jstarborn - yes, you are right, him dumping me is his loss not mine. it'll be easier to accept that when the nightmares stop though. :(
I know from experience that it feels although your world is falling apart but, it is not. Please try to stay strong! There are things you can do. Yes, you need to take him to court he needs to carry you on his ins. atleast until you can find another alternative. If you are not working sepending on where you live try to get on social security then medicare and you can also possibly qualify for the medicaid program now through state. I am better off & you will be too I promise.
I hadn't thought about looking into medicaid, that is something that might definately be an option since I can't work. Thank you so much for the kind words and advice! I'm sorry to hear that you have had to go through something this as well. Would you be willing to send me your personal email? I would like to have someone that has already gone through this to talk to about some things.
Thanks, to all involved in the video & APF for what you have & continue to do for all of us who suffer the life-changing constant & never-ending pain that eventually robs us of our previously happy fun-loving personalities & as well as participation in activities w/our loved ones, as well as the ability to concentrate & perform our jobs to the level we used to & want to which makes us scared-to-death we're going to lose them because of this along w/the family income & health insurances,etc...
We (Chronic Pain Patients) ARE part of the war on drugs. thanks Nancy Reagan. I always ask someone who dose not understand chronic pain if thev'e ever had a bad tooth ache, then tell them to try and imagine that pain 24/7...and then have a " " medical Doctor tell you it's all in your head????.also, undertreated pain patients can mimic (what the medical prof. call) the acts of a "drug seeking patient" which is a whole other world I've avoided, For now. Good luck and Godspeed to all who suffer
You are correct. I don't see a link down where they pointed. Rather than below, it's near the upper right-hand side of this youtube page under "PainFoundation".
I received the link to this video in my E-mail where there's also a link to the petition.
No one knows but those such as I that suffer with chronic pain how we feel stimatized. Since that pain is most often hidden from those around us, we're not given the medical recognition and attention that we need and deserve. There are crusades in the media for so many other illnesses. Please help us who often suffer with little concern or care or even shrugged off as if it's all in our heads. Well, if that's where some of it resides, it's still an illness for which we need medical care.
You need a new Dr. Is it possible? They are not all as arrogant as that one. If he would order a sleep study on you and well, try educating himself a bit on the condition you are fighting then he just might see that YES! Pain does wake you especially when you are not fully asleep to begin with. If you are like many of us your body isn't even falling into a full REM state.j Which means your not sleeping so yes, your pain is waking you or should I say keeping you up! Don't give in to to the beast!
No, getting a new Dr is out of the question., for many reasons. One thing I have found is that one person may get more than enough pain meds and another not enough.
The Drs need to listen to each person and then prescribe according to that particular persons pain issues.
Not to a criteria of age, or anything else he may be thinking.
One Dr said, "OLder patients don't need so muhc pain meds? What????
I so wish I had a local support group. There was one for a while, but I never joined. Perhaps that's why it was disbanded because somany are as I.. We've got to band together. I feel so all alone as I open my pill bottle 4-5 times daily. I'm sure some of my dear friends would be aghast if they knew how much I needed the pain meds just to have a little semblance of normalcy. I'm ashamed to admit that I can't participate in much static standing on my feet,,,must either keep moving or sit.
Do you belong to any support groups on the internet? I know they have helped me and there is a lot of information there and you can meet others who are in pain as we are.
I live with chronic pain. I am also an RN. I would very much like to see some kind of mandates in the treatment of chronic pain. I fully support this video and hope it serves to get attention from those who can help.
Thank you for your efforts on behalf of those of us who suffer chronic pain. It would be a relief to know that we could get the help we need to live more productive lives.
Thanks for the vidio...I live in hell..I know it's fixable...But my insurance BCBS won't pay...I have spent nearly $100k out of pocket, and am still paying...There is no way I will ever be able to afford the additional 3 spinal surgeries I need...I signed, but don't see where it gives me much hope...But Thank for your efforts...
My 20 year old daughter lives in pain every day of her life, as do many others living with the same rare bone disorder. Thanks for this important video... I'll share the info with members of our support group (right after I sign the petition)...
What a great way to get the word out. Thanks for doing this. I will send out links right away!
jabbwolf 2 years ago
I was diagnosed 8 months ago with a painful bladder disease called ( IC ) and yes I can honestly say I am one of the millions that suffer from pain everyday. With the many abusers out there it is getting much harder to be perscribed pain meds by Dr's. So sadley millions of Americans are suffering without any health insuance and can't afford to even see a Dr. We have the right to be treated fairly no matter what the reason is. God Bless and may he be on OUR SIDE with this matter. Thanks.
beverlyjuree77 2 years ago
What is in this bill? You don't say. Some of the pain care doctors out there are just drug dealers in white coats. Their medications are as devastating as street drugs, they are street drugs. Yes I was and still am in pain with 6 herniated disc and radiculopathies but while on the pain medication I was dripping sweat,shaking and freezing cold at the same time. My doctor ignored my suffering and kept prescribing. I had Opiod Induced Hyperanalgesic Syndrome. Look it up it is terrible.
vvenang2 2 years ago
So, you had all these symptoms, and you blame the DR? he kept prescribing, but you kept taking them without seeing another DR? DRs are NOT gods, they need to be questioned, and if they won't listen/answer, find another! Life's too short to deal with DRs with "god" complexes. I have RSD from the waist down, and had a few of these. THINK FOR YOURSELF! You'll live longer.
wakeenyan 2 years ago
If you click on the link to the petition, there is a fairly accurate summary of the bill within the petition. For the sake of brevity and aesthetics I kept out a detailed description of the bill itself from the video, but if you want to know more just click the link.
npcpa2009 2 years ago
I have been living with chronic pain for 3 years now.Two of those years without any medication at all.Cause the Dr. I was seeing dropped me when I lost my job and my insurance.I blame my job loss on him because he had me on meds that made me really tired.I broke the tibia & fibula in my right knee over 4 years ago.. and have 2 screws in there.Everyday I feel like curling up and dying.If I could curl that leg.
hrdbodycowgirl64 2 years ago
My friend sent me this...5*'s and I fav'd it.
People that do not have chronic pain just don't know the truth. It's so easy for them to write it off as YOU must be nutz!!!
Here's what you tell them...put a spring type close-pin on their little figure and go about their daily business...see how long they can leave it on?! Then tell them not too - because YOU can't take yours off...
ifxman 2 years ago
Thank you so much for bringing this to our attention. I own an online Fibromyalgia support group and will be forwarding the email that I received to it. We have about 200 members so hopefully they'll sign and also send it to all of their family and friends. I've been suffereing from Fibromyalgia for around 25 years. "The first 10 of those years I went undiagnosed. Once the Dr told me what I had I sat in his office and cried and cried, that I had an answer.
AriaAnne 2 years ago
Thank you for taking the time to help bring this issue to light. I have lived to struggles of being turned away by doctors and labeld horrible things just because I am in pain... every day...all day. Thank you!
SusiesMom 2 years ago
Thank you for taking the time to make this video presentation for those who are suffering, and need the help of the medical profession NOT the DEA.
wasntme1981 2 years ago
I am definitely in!!! Thank you so much for advocating this issue on all us chronic pain sufferers. The officials, the public, and even doctors need to be re-educated about chronic pain and pain medications. I am so sick of being put down for taking pain meds, like I'm supposed to be strong and take the pain, or that the meds are not 'good' for me. And the pain is? It's a joke! About time - keep up the good work!!
ReneeSue4 2 years ago
This video expresses the need for research and education on the prevelance of chronic pain. If those of us who suffer with untreated chronic pain every day don't speak up, who is going to help us get back into the mainstream of life, help us be functional, to work, care for our families and stop suffering in silence. Shout from the roof tops, spread information in what people can do to help the Pain-Foundation spread the word about this epidemic.
nancyreneec 2 years ago
Really great video. thanks so much for making this!
jrtrobotdance 2 years ago
I've had Burning Mouth Syndrome for over 2 years.A number of treatments have not reduced the pain.I need dental work done and every time I have a procedure, even a cleaning ,the pain kicks into high gear.
Cinderfellow 2 years ago
This video did not speak of how to solve the problem. Just because someone is treated does not solve the problem. Yes, people need help for chronic pain, but what treatment or drug will help. My mother has been on a pain patch that has done her no good. Money is not the problem, what drug will help, surgery is no longer in the books, the doctor isn't collecting any more money, but she did purchase a scooter.
icurizz 2 years ago
Dear icurizz,
Make sure to visit our website and view our publication entitled "Treatment Options." To answer your question, each person is different - what works for one person, may not necessarily work the same way for another.
Educating yourself on the treatments available for your pain and advocating on behalf of yourself or your loved one with your medical team are essential in successfully navigating this journey with pain.
PainFoundation 2 years ago
Most things that liberals call rights are really just priveleges.
snowtrot 2 years ago
Where is this so-called right to health care?
snowtrot 2 years ago
Great Video!!!
shaztazdazy 2 years ago
I live in pain 24/7 from multiple sources. I do not have adequate pain meds. Not enough to help me function in any kind of way.
Drs don't want to treat pain, or if they do, they will usually write a prescription for such a small amount of pain relief that it doesn't even help enough to take the edge off.
And most will not give us inything for break through pain.
The ER is useless, if a pain patient comes in they are called "Users"
and refuse to help
L.J. Cardin
LinLinisme 2 years ago
I agree with you all the way L.J. My dr just doesnt want to know about my pain - he wont prescribe anything decent to help with the debilitating pain. I have been told to exersise more - that will help with the pain, he said. It would be nice, if only it wasnt so painful to move! And as far as the ER - they are a joke! I actually had a "so-called" dr ask me why i had pain! He didnt believe in fibromyalgia & all that comes with it, so i was sent home with a couple of paracetamol.
littlelyny 2 years ago
Hi Littlelyny
Yeah, right. Exercise can only make the pain of RSD worse. Most Dr don't know anything about RSD. I do get some pain meds, but not enough to help me function in any kind of way.
Can you find anyther Dr. Have you tried talking to a Rheumatologist or a Neurologist?
ITs criminal how we are expected to live in agony, and they don't even try to understand or to learn that we do need help with the pain.
LinLinisme
LinLinisme 2 years ago
Have you been able to get any better pain relief?
I still can't get the Dr to understand that I don't have enough to really help the pain.
They think that they know, by reading a book , how the pain feels.
They need to learn to listen and believe the patient.
LinLin
LinLinisme 2 years ago
RSD is our beast we are fighting. We need a team of Drs. to help fight the beast. If our Drs don't want to be on our team then we need to find one's who do. I am always reminding mine of this. I was told that I am in later 2nd stage and doomed. My Dr. will never tell another patient that again. Rather than find a new Dr. I wanted to prove him wrong! So I gave him a course in mind over matter and RSD.
twincoat1 2 years ago
When I go to the Dr. I will demonstrate the feel of my pain on him. He doesn't like that. If it is burning in my hands,feet and back I tell him think of holding your hand over a hot stove til you can't take anymore. If it is tight back muscle I make him turn around and I pinch his upper back and say it feels like that do you understand? in a duh sorta way I will say it's like having the flu ALL the time. He let's me so why not. If only I could get family together and do that so they could get it
twincoat1 2 years ago
I've been fighting chronic pain for almost 15 years. It took me 10 years to get anything to help control the pain. Having more than one underlying condition causing my pain, it is doubly difficult to find any one doc to treat me on all fronts.
Being chronically undermedicated makes it all that much worse.
Thanks for speaking up and I will be going to my Senator's Web site. If I can help in this cause, please let me know.
Linnie62 2 years ago
Great Video! Nicely done and well-worded!!
Calligrams2000 2 years ago
Thank you so very much to all that have made this petition possible, it's needed so badly ! I've been shunned by first one and then another pirmary care Dr' for being ignorant and without compassion about my chronic pain from PN , I suffer 24/7 ,and to be told that I don't need my pain meds and to throw them out is a travesty ! Thankfully , I have a pain Dr that manages my pain with care and compassion .
lesinaz1 2 years ago
Many thanks for your initiative to help pain patients. With the current climate of the government interference in pain treatment I can only hope that this bill passes and those that we care about may receive the treatment that they need. Without the DEA telling the Dr.s how to treat medical issues. It is appauling to us that any non medical agency has taken almost total control or american healthcare and are intimidating physicians so that they are afraid to prescirbe what they feel necessary.
Frillylilly57 2 years ago
Thank you for being and advocate for pain management! I have Dercum's Disease. It's like having lymphatic cancer without the cancer. It has no end and no cure. Normal pain meds don't treat the pain and most doctors won't acknowledge the disease. I am tired of squandering my life away in my room because because of the continuous pain in my body. I have over 145 lbs of tumors in my lymphatics and can't get help! I can't get anyone to listen to me without insulting me or my intellegence.
placidcharmer 2 years ago
Thank you for speaking up for us! This is an amazing project and I will be sending to EVERYONE!!!! Good Job! Already wrote to McCain!
twincoat1 2 years ago
God bless you for all that you are doing for Pain Management. I can't being to tell you how important this is. Rev. Dr. Kaye E Skinner RN
drkayes30 2 years ago
Thank you for making this video. Since a "simple" wrist surgery in Nov 2005, I have had Complex Regional Pain Syndrome. Unfortunately, mine was a California Workers Comp case, and I went nearly 2 years without necessary care; it spread quickly to all 4 limbs and back. Though I worked successfully for over a year, Apple refused to negotiate accommodations this year and terminated my employment.
I live in constant, excruciating pain, like burning alive. Undertreated? Understatement.
leighInSJ 2 years ago
BTW, just because you have signed the petition, don't stop there. Please go to your senators' web sites and write them a personal letter about this, particularly if you or someone you love suffers from chronic pain. Thanks.
leighInSJ 2 years ago
I to had surgery on my left wrist and developed RSDS/CRPS and am now battling the monster all over my body. I call it my house decease because I have had it for about 7yrs now and every time I go to the Dr. they discover something new. I just wanted you to know your not alone.
twincoat1 2 years ago
Hi twincoat1
I am so sorry that you also suffer with RSD. It's a terrible thing to have to live with.
LinLin
LinLinisme 2 years ago
Hi twincoat
The Drs don't even believe that RSD/CRPS can travel from the original site. I have a hard time trying to teach them. And they do not understand the pain. Nor do they want to geive us appropiiate pain meds.
LinLin
let's keep in touch
LinLinisme 2 years ago
I slso have RSD the pain is agony and it never stops. The Dr thinks "You should be used to it by now"
I also live in excruciating pain and it never stops.
LinLin
LinLinisme 2 years ago
Hi LinLin,
I have RSD II and I fully understand how much this pain can destroy. My DRs told me my pain was not real it was in my head until the diagnostic reports confirmed that it was not in my head. Little do people know that RSD is the worst pain known to man and medicine. I can honsetly say I know your pain and how it can make you feel. Ms. Lin I invite you to keep intouch with a fellow RSD sufferer.
MsPril77 2 years ago
Hi MsPril77
How are you doing today? Do you ever get some time when the pain is less. I know you and I will never be pain free,but sometimes it can be a littlle less and those times are wonderul. Too bad they don't last.
LinLin
LinLinisme 2 years ago
Wow - What an awesome response! This video (at the moment) is ranked #29 Most Viewed (Today) Non-Profit Activism.
The petition has 800 more signatures than it had yesterday!
Way to go! This is how we present a United Voice of Hope and Power Over Pain!
PainFoundation 2 years ago
If those of us who suffer from chronic pain don't speak up, then how are the officials going to accurately learn how prevelent chronic pain is and come up with solutions that put us back into main
nancyreneec 2 years ago
Thank you guys for starting this petition and brining the Act to our attention. I know most pain sufferers are exhausted and would not be in a position to put together a petition like this. I am passing this on to all that I know, including the president of the Arthritis Foundation Association in my state in hopes that they will circulate the petition.
LearnFibro 2 years ago
Thanks so very much, to all involved in this! Chronic pain is a destructive monster! We battle every day to get by. 6 years of daily pain, for both of us,14operations in 6 years between us.We've spent our savings and must sell our home in this market. You shouldn't have to loose everything because of a disease or chronic pain from cancer radiation treatment. It's hard for 1 person to deal with Chronic Pain, but is disasterous for a couple! We struggle with daily, simple things! We need HELP!!
mbandjonlev 2 years ago
I have lived with chronic pain/illness for the last 12 years of my life and I am now in the process of divorce thanks to my illness. After losing my husband, I'll also be losing the health insurance that his work provided for me. Losing my husband is punishment enough, not being able to get the treatment I need to make my life worth living is inhumane. Please support chronic pain sufferers, don't make their lives worse.
alolz99 2 years ago
You need a new lawyer, one who will make your husband continue to carry you on his insurance or pay for your own.
imstormie2 2 years ago
Under HIPAA, if your husbands group coverage covered you, you must be accepted without preexisting conditions. DO NOT let your coverage lapse, make sure the language is in the divorce agreement.. You didn't lose your husband, your husband left you when the for worse part of marriage happened. You will be better off living alone in peace than feeling like a damaged package. You are still a whole person who has pain...remember that!
jstarborn 2 years ago
Thanks guys, I have gotten a lawyer and I am going to be able to secure Cobra coverage. It only lasts three years, but at least that's three years with coverage than without.
jstarborn - yes, you are right, him dumping me is his loss not mine. it'll be easier to accept that when the nightmares stop though. :(
thanks for your replies!
alolz99 2 years ago
I know from experience that it feels although your world is falling apart but, it is not. Please try to stay strong! There are things you can do. Yes, you need to take him to court he needs to carry you on his ins. atleast until you can find another alternative. If you are not working sepending on where you live try to get on social security then medicare and you can also possibly qualify for the medicaid program now through state. I am better off & you will be too I promise.
twincoat1 2 years ago
I hadn't thought about looking into medicaid, that is something that might definately be an option since I can't work. Thank you so much for the kind words and advice! I'm sorry to hear that you have had to go through something this as well. Would you be willing to send me your personal email? I would like to have someone that has already gone through this to talk to about some things.
alolz99 2 years ago
Thanks, to all involved in the video & APF for what you have & continue to do for all of us who suffer the life-changing constant & never-ending pain that eventually robs us of our previously happy fun-loving personalities & as well as participation in activities w/our loved ones, as well as the ability to concentrate & perform our jobs to the level we used to & want to which makes us scared-to-death we're going to lose them because of this along w/the family income & health insurances,etc...
jwwrkw 2 years ago
We (Chronic Pain Patients) ARE part of the war on drugs. thanks Nancy Reagan. I always ask someone who dose not understand chronic pain if thev'e ever had a bad tooth ache, then tell them to try and imagine that pain 24/7...and then have a " " medical Doctor tell you it's all in your head????.also, undertreated pain patients can mimic (what the medical prof. call) the acts of a "drug seeking patient" which is a whole other world I've avoided, For now. Good luck and Godspeed to all who suffer
bonzaibob2000 2 years ago
Excellent, but I can't find the petition link. It was inside the video, but there is no link here on the YouTube page!
jazzwoman1 2 years ago
You are correct. I don't see a link down where they pointed. Rather than below, it's near the upper right-hand side of this youtube page under "PainFoundation".
I received the link to this video in my E-mail where there's also a link to the petition.
openmyeyes1940 2 years ago
No one knows but those such as I that suffer with chronic pain how we feel stimatized. Since that pain is most often hidden from those around us, we're not given the medical recognition and attention that we need and deserve. There are crusades in the media for so many other illnesses. Please help us who often suffer with little concern or care or even shrugged off as if it's all in our heads. Well, if that's where some of it resides, it's still an illness for which we need medical care.
openmyeyes1940 2 years ago
Hi
You are so right. We understand and know how much pain we are in, and when we have enough pain medicines.
Chronic Pain Patients rarely get addicted or overuse the meds.
We also know that the pain never stops and the Dr doesn't believe that pain wakes us up.
He says "Pain can't wake you up, you can't feel pain in your sleep"
How stupid is that. You know that pain does wake us up. If we had propler pain control, perhaps we could sleep. And then out sleep might be helpful
LinLinis me
LinLinisme 2 years ago
You need a new Dr. Is it possible? They are not all as arrogant as that one. If he would order a sleep study on you and well, try educating himself a bit on the condition you are fighting then he just might see that YES! Pain does wake you especially when you are not fully asleep to begin with. If you are like many of us your body isn't even falling into a full REM state.j Which means your not sleeping so yes, your pain is waking you or should I say keeping you up! Don't give in to to the beast!
twincoat1 2 years ago
No, getting a new Dr is out of the question., for many reasons. One thing I have found is that one person may get more than enough pain meds and another not enough.
The Drs need to listen to each person and then prescribe according to that particular persons pain issues.
Not to a criteria of age, or anything else he may be thinking.
One Dr said, "OLder patients don't need so muhc pain meds? What????
LinLinisme 2 years ago
Comment removed
sosdocmd 2 years ago
Thanks sodocmd
You are so right, I am still trying to get this Dr to understand that pain doesn't go away just because we age.
One does not "get used" to pain and we do need adjust ments im the dose of pain meds.
Like you, I think this Dr, (and others) don't want to do their jobs.
Listening should be a big part of treating a patient, not just doing as they please
LinLinisme
LinLinisme 2 years ago
Hi openmyeyes1940
It seems anytime pain is mentioned, all the media or Drs want to do is focus on people who use drugs recreationally.
but the pain patient is undertreated and generally not well acccepted by the Drs.
Doctors need to listen to the patient and treat pain agressively.
linlinisme
LinLinisme 2 years ago
I so wish I had a local support group. There was one for a while, but I never joined. Perhaps that's why it was disbanded because somany are as I.. We've got to band together. I feel so all alone as I open my pill bottle 4-5 times daily. I'm sure some of my dear friends would be aghast if they knew how much I needed the pain meds just to have a little semblance of normalcy. I'm ashamed to admit that I can't participate in much static standing on my feet,,,must either keep moving or sit.
openmyeyes1940 2 years ago
Hi
Do you belong to any support groups on the internet? I know they have helped me and there is a lot of information there and you can meet others who are in pain as we are.
LinLinisme
LinLinisme 2 years ago
I live with chronic pain. I am also an RN. I would very much like to see some kind of mandates in the treatment of chronic pain. I fully support this video and hope it serves to get attention from those who can help.
learnFMnow 2 years ago
Thank you for your efforts on behalf of those of us who suffer chronic pain. It would be a relief to know that we could get the help we need to live more productive lives.
LizKS48 2 years ago
I support This Video.
Pain Is not enjoyable and Thousands Live With Pain with NO Support From Our
Leaders .
I Support and Offer My Art and Talents to Help
All In Need Because Life is to Wonderful To Live with Pain
GOD BLESS AMERICA
And PEOPLE THAT CARE
SerafinArt 2 years ago
Thanks for the vidio...I live in hell..I know it's fixable...But my insurance BCBS won't pay...I have spent nearly $100k out of pocket, and am still paying...There is no way I will ever be able to afford the additional 3 spinal surgeries I need...I signed, but don't see where it gives me much hope...But Thank for your efforts...
actionracing 2 years ago
This is awesome! :) Thanks for taking the initiative to do this. You are awesome :) I've signed the petition...and asked friends to do so as well.
I am a chronic pain sufferer.
lexishaley 2 years ago
My 20 year old daughter lives in pain every day of her life, as do many others living with the same rare bone disorder. Thanks for this important video... I'll share the info with members of our support group (right after I sign the petition)...
nicandme123 2 years ago