What Would You Tell Bernie?

What Would You Tell Bernie?

By Ed Coghlan.

We have a very important question for you at the end of this short story.

On Thursday we ran our annual “What Are You Thankful For?” feature that asks chronic pain patients, advocates and providers to share something positive in their lives.

As always, we received many positive responses from people who were thankful for their families, as “Chereese” said when she wrote, “I’m thankful for my husband cooking and bring me meals while bedridden due to unmanaged pain.

Deborah Babcock said the same about her family:

“I am thankful for my family first and foremost. they watch me go through chronic pain every day of my life with no relief and they are so understanding and helpful.”

People’s faith in a higher power came through with many of our commenters.

As F.S.T. wrote: “I am thankful first for Jesus for saving me. And for years, His helping bring stillness to my soul. Thankful for Him for being there and upholding me and going before me to fight my way thru this world, and clear the way for me, because everywhere I go, He’s been there before.”

Virginia also thanked God for helping her through the battle against chronic pain. And like many this year and in years past, she mentioned her pet.

“I’m thankful for my caregiver Sox, my cat whom I’ve had going on 9 years now.”

And Virginia, like many others, thanked us at the National Pain Report and many of our readers who comment on the stories:

“I’m thankful for you, National Pain Report, and all of you pain warriors who wrote in all this year who kept me going!”

And then I saw this…from a reader who calls himself only Bernie and it ruined my weekend.

“I’m thankful that my birthday is in a month and my present to myself is to end my pain permanently by suicide. Because nobody cares and this is what this government wants.”

I sent Bernie an email, asking him to get help, to stay strong and that people are here for him.

I ask you, what would you tell Bernie?

He reads the National Pain Report. Leave him a comment and let him know that you care.

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Authored by: Ed Coghlan

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Vena

Bernie, I know it doesn’t feel like it but your life matters, you are not alone in your fight against Chronic pain and suffering. Your email just breaks my heart but I do understand how helpless, depressed and discouraged you feel. I myself have suffered with some form of Chronic pain for 32 years now and the pain has been so unbearable at times I felt like I would surely die from it. Please stay strong and don’t take your life and seek counseling and please don’t take your life. I am sending you a big hug and praying for you. I pray God sends you some Earth Angels to reach out to you and come alongside you and help you in your battle. I’m so sorry you feel this way and your voice needs to be heard in the government all of our voices do so changes can be made. Please don’t give up Bernie and please keep fighting. “YOU ARE SO MUCH STRONGER THAN YOU THINK OR FEEL!”

Ellen Lenox Smith

I would like to tell Bernie that life is a horrible struggle living with chronic pain but that I truly hope that he can hold off and see if the next day might be brighter than this one is. Life needs hope to want to hold on and fight. Life needs purpose and meaning – so maybe there is someone you can reach out to that needs YOU and see your courage to try to get through this. All in the pain community understand feeling this way – I doubt many have not also wondered what the point was to keep fighting and had a horrible day that they felt lost and in pain. Most would not have the courage to say it out loud but most have thought of this ending too………but this is all we get – this is the life we have been give, so I hope you will find caring people to share with and be with to help you find the courage to keep plugging on

Wendy Hawthorne

I would tell Bernie that I am a lucky woman to still be able to push through the pain, there are many worse off than myself. But, when I lost my low dose pain medication exercise mostly stopped and I became type 2 diabetic. All people who use meds for pain do not get addicted and we are being treated unfairly.

Amri Plisko

Just reading this is flaring up my PTSD. My brother had paranoid schizophrenia and he took his life when we were teens and I found him along with one of my sisters. It has literally torn our family apart. When I stopped being able to work because the pain wouldn’t let me sleep or eat I focused on seeing the sunrise and sunset every day. I don’t know what I would do without my relationship with God. You are loved Bernie. Please don’t hurt yourself because it leaves your pain for others to bare. Your life has a purpose! Please call for help.
Blessings,
Amri

Dee

Bernie, I know. I know it seems hopeless and pointless to live your life with pain that never ends. I’m not going to feed you any pap about how God wants you to live. What I will say is that there is work for you to do, and if you’re still breathing you aren’t finished. And while you are still with us there is hope. Please don’t end it. Get help. Call a hotline (the national one is 1-800-273-8255), find a crisis intervention center. You are worth it. You are more precious than rubies.

Rosanna Zaffiro

Dear Bernie,

I care for you, and all of my fellow chronic pain sufferers. I too, have thought about ending my life. During the cold winter months, I’m basically useless. I feel guilt because I have to rely on my husband so much, who himself is so busy running our business. I can’t cook for my family, so I feel guilt and shame that they arent eating healthy. The list goes on and on. But one day my daughter gave me a birthday card, and in it she told me I was the best mother in the world. She said i didn’t have to be physical to be a good mother, and how watching me suffer has taught her a lot about life. To never take a human being for granted, to always help others in their time of need, and not to judge, because we don’t know what someone may be going through. It also taught her to stand up and fight for what’s right!
After contemplating her words, I realized i do have a purpose. In ways I didn’t even realize. She is a wonderful human being and so is our son. If I’ve taught them anything, it’s to persevere! How could I let them down!!!
Now when those thoughts return, I think it through all the way to the end! How much trauma i would inflict to my husband, children, siblings and friends. My family’s lives would never be the same. And would they possibly blame themselves???
I know I don’t get to say when I leave this earth. I didn’t have a say when God put me here, and it’s up to him when I leave. Besides the fact that I don’t want to lose my soul, I believe I’m still here because my work is not completed. Whether you realize it or not, your work is not done either. We must unite with our fellow pain warriors. We must fight the fight.
Your life is worth value. Dont think less of yourself. You are important and you are wanted.
If you’re able to go on a computer, reach out to pain support groups. They have provided me with much help during the months I’m homebound. Call a suicide hotline.
Please know you’re in my prayers! We need you.

Rose

Bernie
I tried it to bernie i was tired of the pain and no one would listen to me so i tried my daughter found me and started cpr while my youngest called 911 i flat lined 3 times and they jumped my heart each time the doctor called my mother and told her to come that night and say her goodbye i wasnt going to survive and if i did with all the oxygen i lost to my brain i would not know anyone. Well as you can hear i did survive i do remember my family and do have some memory loss but bernie you really dont want to try what if i wasnt so lucky what if i did survive but didnt remember anyone then i would still be in pain but alone look at all the comments to you bernie there are alot of people that do care if you live or die please bernie dont be stupid like me i was very VERY lucky if you need something to be greatful for be greatful that you can still read all the loving and caring comments for you and if you would like to talk to me e mail me i would love to talk i have no friends and we could care for each other bernie trust me its really not worth the heart ache email me k

Janelle abbott

Bernie, please think clear and really go through all of the pros and cons when thinking about taking your life. God promises us he will never allow us to suffer more than we can bare. Ik u must be a strong person who is calling for help. Think outside yourself once and all your friends, family, how much they would be hurting if you took your own life. Ik it must be difficult at times. But please talk to somebody at least talk your issues out with someone. The government is chaging and i realize maybe its not changing fast enough. All the drs. Out there one day will realize what they did was wrong. It violated your rights as it did mine and all the hundred of thousands of pain patient. The pendulum will swing in the right direction. But it may take some time. I have been through an un believable year my companion of 17 years passed away. My sister a little more than a week later. And trying to get through 2 deaths with driving back and fourth to the hospital praying my joints wont begin to throb as then i get so angry when i can barely walk. I turned to drugs i shouldnt have but i alwsys justified it. It did help me for awhile but then $ ran out. Now i need to explain something. I turned all my grief and dedpair over to god. I cried out to him. And since then i made the decion to go on suboxone. At least i feel more normal and it really does help with pain. So seek out solutions to your situation!!!!!! Im pleading with you please seek out god and ask him to bring the right people into your life. I believe in miracles and you need to also. The lord knows your suffering. He suffered. Please stay here for your family.

Bernie- hang on. I have felt like you many times. Twice I walked in to the woods with a loaded pistol. Emotional pain can be worse. I can’t explain why I didn’t see it through. I keep a text a young man sent me. Said I saved him. If my existence saves just one soul. Some how that’s enough. YOU ARE NOT ALONE !

Peggy

Dear Bernie,
Don’t give the government what you think they want. Suicide is a permanent solution to a temporary problem. Be a thorn in the side of the misguided doctors and those government officials who are trying to over-regulate the so-called opioid crisis. God forbid should any of these so-called regulators or their close family end up with a chronic pain condition that can’t be controlled without the use of opioids.

People (patients) who have used opioids to either get high or to commit suicide and doctors who are have turned their clinics into opioid meccas are also guilty of fueling this crisis. Most people go through nearly a decade of NSAIDS. It wasn’t until I had bleeding ulcers several times and serious intestinal bleeding that I #was finally prescribed opioids. Other than stronger medications immediately after surgery or getting an occasional shot of Demerol with Phenergan for Migraine-tension combo headaches, Acetaminophen with codeine has been the drug for me that seems to work the best. I started out on Acetaminophen with codeine #3 in about 1995 and have been on Acetaminophen with codeine #4 since 2005, one tablet every four hours has continued to work well for me. but Other people who have more serious and/or more chronic pain conditions than I have are the ones who are suffering the most and my heart goes out to them.

Check with your doctor to make sure that the medication you are taking is not causing your suicidal thoughts. When I was put on Lyrica, I almost committed suicide. When put back on Gabapentin the problem went away.

Don’t give up. The people who run this pain organization, those who write the articles and patients who share their experiences really do care about other pain chronic pain patients and are hopeful that things will change from treating chronic pain patients like criminals to patients who really do need opioids for any quality of life. A

ElizabethR

I do not find any mention of which birthday is coming up for Bernie. Is he a young man with a family, an old man alone in the world or something in between? I’ve contemplated the “Bernie Solution” at times when it seemed like all there was for me in the foreseeable future was more–and worse–pain. Then add the anxiety and stress of not knowing if/when my responsible use of a mild opiate will be eliminated or reduced, courtesy of “my” government. That said, at almost 82 I’m still here, despite years of dealing with chronic pain.

For today anyway, I’ve determined that taking my life isn’t something I could do to my husband of 40+ years. If he predeceases me, well, that’s a change in circumstances. However, wait a minute! How could I put my two black cats (ages 18 and 13) in a shelter where, in all likelihood, they would never find a new home? So, it’s not as simple as it may look for me–and I sincerely hope not for Bernie, either, especially if he is a younger man. Serious pain can lead down dark pathways–I’m very aware of that–but I hope that Bernie will be able to find a reason to hang on until conditions improve for all of us.

Notasheep

Bernie, I am sorry. I am sorry you and all of us are being put through this. I know what you are going through, wished I didn’t, but I do. I understand the soul crushing pain you feel. I used to say tie a knot in your rope and hang on, but what a complete bullshite phrase to use. I swore to God I would not make my parents and kids bury me. I am determined to make these bastards pay for what they are doing, if nothing else I will make them pay my SSD. I am stubborn as an old mule. That is honestly my knot, my family and making them squirm by posting online what this fake opioid war is doing to me as they pay my SSD. I hate that damn knot sometimes, but it also keeps me here in those unending pain screaming nights.

See, I am selfish. I need you to stay and have hope so when my hope falters, I can lean on yours. I wish you would stay, but I truly understand.

God help us.

F.S.T.

Bernie,

Just today, I read this email and it broke my heart. I had to read it twice; the second time slowly, slowly. I had to let each word you wrote sink in.

I wasn’t shocked by your words like I would’ve been only several years ago. Before I began my courtship with chronic pain, I’d have been shocked at what you said. As the courtship devolved into a full-blown 24/7 onslaught of chronic pain, for the first time in my life, I began to understand what motivates people to end their lives.

But with that understanding came the beginning of a new reality I understood even more: my life isn’t mine to take. I looked at the millions of other pain patients and some of their stories made mine look pale, yet I spend part of every single day in tears because of unrelenting pain. Countless people in Biblical times withstood the pain conviction they were under. Look at the Apostle Paul: he spent years in a cold, dark dungeon next to a cistern where all of Rome’s human waste gathered. Yet he penned the most beautiful epistles and letters there, about how exceedingly joyous he was because he had the Lord!

Bernie, I don’t know if you even have a family. You may not, I don’t know. You may think no one cares. There is someone, somewhere, who does. I guarantee it. There is a huge pain community right here who cares. If you die by your own hand, that someone, somewhere would be devastated, and so would we.

We pain patients have the moral obligation, I believe, to hold each other up when we’re able. We have each other. And God sees every tear; he counts them lovingly and His heart breaks for you too. He knows He has something better for you, if you just wait on Him. He knows perfectly what you need and when.

Please, Bernie. Just for today, take a deep breath and know there’s a Higher place, a Higher Love.

Just for today. One day at a time. Just for today.

Terry

Hello again Bernie. I commented previously to your plight and I just wanted to add some more information that didn’t seem significant until I read other people’s comments. September 20, 2017, my 27 year old son committed suicide. He took dozens of over the counter medications along with a lot of cough syrup. The point of me sharing this with you along with everyone else is this. Suicide ruins more lives then just the victim, it affects EVERYONE who knows and loves you. You would think that after 14 months I should feel better, well I don’t. I’m 60 years old and there’s not a day goes by that I don’t have tears in my eyes and an emptiness in my heart. Please consider your family and friends who love you, suicide is very selfish and it will affect EVERYONE that you know. You have choices, suicide affects numerous people’s lives horribly. Try something else, counseling, anti-depressants, etc. Myself, I have been trying a chronic pain psychologist and with some success. She’s a normal psychologist who also teaches meditation to relieve physical pain. It’s kind of like being hypnotized except you’re aware of everything going on. So she repeats the same visualizations every time you go in, with the hope that you will memorize everything so you can mentally bring your own pain levels down no matter where you are. The first time I saw her I was shocked, I had no pain whatsoever, for an hour after. The next 3 times were very similar with one distinction, when I was home I tried the same technique on myself and got 30 mins of relief at least five times. It’s like anything you do, practice makes perfect. She just repeats the same words over and over until it becomes second nature, the hope is that you could use this technique on yourself without lying down or closing your eyes. The last time in her office it lasted 3 hrs! Please try anything and everything. I would give ANYTHING to talk to my son again, he was my best friend. Your life is so precious, please consider it all.

Robert

I too considered ending my life not so much because I was sad but rather I felt that life was not worth living since the chronic pain ruled every aspect of daily living. BUT, when I considered how my family and friends (though few) would be affected by my act I reconsidered and discovered that I would be making a very selfish act and as I have found in other choices I have had to make in life, the hardest path was also the right path. I am not particularly brave or strong but this was my chance to fight with every last fiber of my being to do the right thing for those few people who would be hurt by my action, So , I found inspiration in thinking about why I was fighting on.

Others have faced events in their lives that were surely as painful to them as my condition was to me and somehow summoned the strength to endure. I recommend you visualize the people in your life and how they would feel after you ended your life. Are you doing right by them? I am not a religious person but I have discovered one real thing in life and that is that ultimate fulfillment and happiness comes only when we focus on someone else’s happiness and when we devote our lives to try and improve those special someones we are ultimately the happiest and most content we can be. If you think you have no one that will care think again. No man is an island and your absence will certainly be felt by someone. If for no one else just think of the message that your loss will send to the thousands of readers of this website!

Michelle Alvarez

Bernie, I get where you’re coming from completely. I’ve been there, and I’m sure I’ll be there again. One day at a time is how I get by. Remember you are part of a big chronic pain family and we need you. You’re not alone!!! I hope you can feel the love. Keep strong my friend.
Lots of hugs,
M.A.

Carole Verscharen

Bernie, I feel that way as i spend so much of my day and night in bed. Then I think of the people who would be hurt by my ending my life. Please find someone to talk with. Your pain is real and it sucks that we can’t live a life like so many others. You are cared about.

Michelle

Bernie i know how youre feeling.not only excruciating pain but feeling betrayed by OUR gov’t-who have forgotten its WE the PEOPLE and are forsaking us all- and the frustration that all of this and more, brings us 24/7 . im genuinely , sincerely sorry for your pain and all you’re having to endure. Please dont give up. Wednesday night , the morning of thanksgiving i got the call no one wantz at130 am from my oldest daughter crying so hard i could not understand her. Then i heard her. My 29 yr old , soon to be 30 on Dec 30th, son in the Navy out in California had died 2 hours before. We are all in agonizing mental and emotional pain as well as my physical pain. We don’t know what happened or why. His gf he was going to propose to is due witb his first baby, a girl, the end of January. And were all beyond devastated we lost him. Please dont hurt the people who love and like and care about you and make them have this excruciating pain of permanent loss. I wish I could help you, help all of us. We ARE warriors , YOU Bernie ARE a warrior. I do know how youre feeling. I go through the thoughts and feelings every day myself but could not put anyone through finding my body and the trauma it would cause them for the rest of their lives and couldn’T cause the horrific pain of wondering what i could’ve, would’ve, should have done to prevent it or help the person to not take their own life. The after effects of a person killing themselves is more far more than I think you realise and it will affect so many you’re not even thinking of when you’re deep in that state of mind. A suicide trickles outward in waves onto almost every person who knows you. I hope you will find help Bernie and please remember there are many of us who have horrific pain and do know how you’re feeling and we do care. We’re real people just like you and just because this is the internet doesn’t make it any less sincere. I pray you find help amd relief Bernie I really do.

Heather

Bernie,
I know what is happening is terrible. There are hopeful signs too. Have you seen this? https://www.painnewsnetwork.org/stories/2018/11/14/ama-calls-for-misapplication-of-cdc-opioid-guideline-to-end

There is opposition to what’s happening and people are fighting. They’re fighting for me… and they’re fighting for you, too.

I am so sorry you are struggling, and I do know that birthdays can be difficult times. Can you please talk to someone and get help? I’ve needed help before during dark times. You’re really not alone. There are people here who are reaching out to you. I truly, truly am sorry you’re hurting, but please hold on.

Maureen M.

I wrote a note to Bernie in the ‘Thankful’ post last night and cannot get him/her out of my mind since. I’ve been in prayer since …. God help Bernie and all others in the same situation and frame of mind. I cannot imagine reaching that point in suffering. Maureen M.

Connie Woods

I’d tell Bernie to hang on. I believe there will be a balance. That chronic pain is a bitch and we need pain medication, people are hearing us. This is a mess that’s going to get fixed. CDC and others put out too many lies and liers never win. Plus I’d give him a hugs. I’m thankful for Dr standing up for us. We hurt, we cry, we barly live, we must keep our hope up. No more people need to die in pain.

Dick fort

I would say Bernie is exactly right unfortunately, the pmp should of been put in place a long time ago and alot of this pain and misery could of been avoided to a large degree, it woulda allowed doctors to not be afraid of prescribing meds that are actually need to paitents , now you have a giant vacuum of legit patient cancer and cronic pain paitents that can’t get anything at all, so u have tons of people just like Bernie feeling and thinking that exact way, then they make these guidelines when most paitents we’re fine had been getting a certain amount for years that are not only dependant on that dose but dependant on it for pain relief , so u had doctor’s wither completely cut paitents or whack there meds in half or if not more, and these doctors should have alil more bed side Manor the proper way is 10 percent decreases sometimes even less once u get to a comfortable dosage and u been there for years then u have to have it messed with or cut in half is a nightmeare , it’s like it’s not bad enough just living isn’t hard enough but they have to make it even harder and tougher…
The government doesn’t care about us they made there money off us all they see is a problem and the easiest and best way is to just let kill themselves or whind up doing something crazy or what u have is people resorting to extreme hard drugs, all they had to do was clean up the heroine problem put some.education into the schools and let the pmp do it’s thing and if u get caught going to two doctors then u get red lighted and u lose ur spot, things would of slowly went back to the people that actually need them this is a problem that’s not gunna be fixed over night it’s gunna take time for it to fix itself , the problem now is not the pills it’s the heroine that they never seem to mention or so anything about all they wanna say is it’s the pills it’s the pills, the truth is alot of ods aren’t cause of the pills it’s cause there mixed with other things. They don’t care nor do the docs

ROGER JACKSON

HANG IN THERE BERNIE. I CARE AND FEEL LIKE YOU. I HAVE HAD PAIN SO SEVERE THAT FEW PEOPLE HAVE EVER HAD IT.. YES IT IS TRUE. SOME HOW, SOME WAY THERE WILL BE A BRIGHTER DAY.
PAIN SO SEVERE, THAT MY PERSONALITY SHIFTED. I BECAME SOMEONE ELSE AND I DON’T REMEMBER IT AT ALL.

Kim

We tend 2 feel we r doing the greatest good in the world when we r strong/ active , therefore when we r set aside 2 suffer when we r sick, when we r consumed with pain,& when our activities have stopped, we feel we r no longer of any use & r accomplishing nothing. If we r patient/ submissive , we will b a greater blessing 4 the world around us during our time of suffering & pain than we were when we were well. What we endure helps us 2 understand the trials of others, equipping is 2 help them & 2 sympathize with them. Don’t give up & allow the gov’t 2 win this war. My faith in God has given me the strength 2 go on. I wish I could send u my prayer book. Hang in there, I’m praying 4 u. Mayb start a support group 4 pain patients/ u r illness. I thank this web site 4 helping & giving all of us a chance to support each other.

Deedee

I feel the same way, so tired of being invisible, no one wants to deal with treating chronic pain especially with opiates- the only medication that has ever given me relief btw. I’m so tired of being abused by the medical system and being a guinnea pig for medications that don’t work and make me feel worse. Winters are always the hardest for me in coping with my pain, I don’t know if that’s the same for you, and I really don’t know what to say that will help you keep on a keep’n on, i know the struggle. Really the only thing that keeps me going is the thought that I’m not going to let them win-the government or my demons by ending my life. Because if I commit suicide or become an addict then those who abused me have won (at least in my eyes anyway), and I’ll be damned if I’m going to let those b-a-s-t-a-r-d-s win.

Dale

I’d tell Bernie to take out his torturers before turning on himself.

Dear Bernie, I just want you to know I have been praying for us the chronic pain patients to get what we need. I have written to all of the political people in CT and ones having to do with medical issues. I talked with my pm doctor and he is a fighter for us. He hopes things will turn around to help us. I have been his patient for 14 years and I believe him. Please try to fight for a little longer and remember you are not alone. We are here for you. God bless you. Marge

Cindy

Bernie, I think many of us have been there. I had a plan for years. A few years ago we had to put my Dog to sleep. I was going to take her to the mountains rent a cabin and give her a lovely meal with lots of pain medication. Then I was going to take the medication with a nice glass of wine and go to bed to cuddle with my dog.
I’ve haven’t told anyone my plan. In the end, I couldn’t do it because I knew what it would do to my family.
People don’t understand our pain except for the people who have experienced it.
I do believe things will get better with the government.
In the end, you have to find a reason to live. No one can do it for you.
Make some friends with people that have pain. I’m sure there are many people here that would talk with you. It helps to know others who have pain, you can support each other. We all need support.
I deeply wish you well.

Brenda Bennett

Bernie, plz hang on. We’re all working hard to get things better. We need u to stay wth us. I’m praying for you in Jesus Name.

Steven

I am now very thankful for the caring doctors and pills I used to have! Thank the Savior that I still have. JESUS!

ELM

Bernie, I understand. I have been abused by pharmacists, doctors, and nurses because of their unsympathetic dismissiveness. None of this is fair. Those of us with chronic pain and ilness have already been dealt a a bad hand, and the overregulation of our treatment plans are making things even worse. It’s terrible. It’s cruel. It feels heartless, and subjects us to humiliation and uncertainty. But we have been unjustly sucked into a war (on “drugs”) that we didn’t cause, can’t fix, and has nothing to do with us. And we have no choice but to keep fighting. I have been sick for about 20 years, and I have seen all kinds of changes to healthcare in that time. These things are cyclical. When I was first diagnosed with my condition, I rejected Western medicine and tried to cure myself with diet therapy, meditation, and acupuncture (it didn’t work) and my doctor’s thought I was nuts and needed to be on medication. Now they are yanking medication and abandoning their training and prescribing things like deep breathing “mindfulness” – whatever the heck that means. It’s a bizarre 180. Also, there was a time when you couldn’t get insurance, even through your employer, if you had a “pre-existing condition”. Things change, and they will change again. Keep fighting. Keep standing up for yourself and keep your dignity. Keep going. Take things one day, one hour, or one minute at a time if you have to. Keep your hope. Stay with us and continue to advocate for pain management with us. There is strength in numbers, and we need you. Keep going.
The tides will turn again.

Jodi

Dear Bernie,
I understand completely where you are coming from. I have been thinking of this myself as well. I have a very good friend who’s daughter committed suicide when she was 15. It has completely ruined my friends life. She just didn’t understand what she did wrong for her daughter to do that, so she blames herself terribly. I think of that whenever I start feeling like I can’t handle the pain anymore. I hope you have someone who you can talk with, maybe a friend or family member? I haven’t ever said anything to my family about my feelings because they aren’t the best at understanding pain and expect me to be able to do things just like before, and I just can’t do those things anymore with CRPS. I probably should be seeing a counselor myself. Please try to reach out to someone who understands what you are going through. I am here if you want to just talk. We need as many people here to continue to fight against our government for this torture.

Terry

Hey Bernie. Listen, I know it sucks and sometimes it’s unbarable but we can’t let the bastards win, we’ve endured so much. 15 years ago or so I was at work at a big car company, in engineering. One day my buddy Kevin and I both pulled into our parking spots at the same time, so we walked in together. It was a 4 story building. He asked me how my pain management was going and I proceeded to tell him all about all of my problems and how much I hurt, how it was debilitating and I couldn’t do my yard work like I use to. We were on the elevator when it stopped on the first floor and the door opened, and a young woman about 32 or so rolled in using her electric wheelchair and navigated herself onto the elevator, she used one good finger that she had to control the lever, and basically she didn’t have legs, she had feet on the end of what I would characterize as stubs, her back was all hunched over and she had deformed arms and hands as well. She greeted us with a great big cheery smile and a resounding “good morning! “, needless to say my problems seemed pretty damn insignificant compared to her situation and her day-to-day routines. We had both seen her before, in the parking lot, parking her van which was set up for her handicap. Even getting dressed had to be a struggle. Kevin and I looked at each other and then down at our feet, we didn’t have to say anything. When I’m feeling beat down, at the end of my rope, in pain 24 hours a day, when I feel all of those negative feelings and my mind goes to that dark place, you obviously know where I mean, when I go there I think of that young woman and all that she suffers every single day, then I feel blessed and it’s enough to bring me back into the light. Having a positive attitude even if it’s forced, can only help you through these hard days, and know, YOU ARE NOT ALONE! If your mind wanders to that dark place, reach out and we will be there. This forum is here to help us, so reach out brother. God bless you.

Colleen LISI

I understand….hopefully things will turn around. Dont do it…..

Wendy Paley

Dear Bernie,
There are more people out there that care than you realize. I think you stop hearing from people because they feel frustrated when they see you suffering and do not know what to say. This makes them uncomfortable so they start avoiding you. Unfortunately this comes across as lack of caring. They do not understand this is just as painful emotionally for us as the physical pain. I think all of us in chronic pain have the same thought as you, on and off. We keep pushing on one day at a time hoping there will be a breakthrough in treating chronic pain. Please don’t give up. It will happen! Hugs to you.

Geoffrey Nielson

Dear Bernie, I read your comments multiple times. I support you getting help. You and I have been at the ends of our pain ropes before today.
I have cried out many times, the last time was 12/17/07.
I prayed that I would be the example to somebody that I needed help. My arresting officers stopped me on a local highway. At the car window they said, “… We heard you needed help, how fast do ‘you’ want it …”
A SPIRITUAL malady was my immediate problem. My alcohol and drug use were just symptoms. They told me, ” All Lives Matter “. My incarceration was my jumping off point. My daily life past this point has been in AA and NA. My sober and clean date became 02/10/08. Obviously, I had to arrest my addictions or die.
Long moments, hours, days and now years have gone by and my obsession with alcohol and drugs was lifted. This was marked by taking a choice, a chance and a change in me.
My physical and emotional arenas provided opportunities with traditional western medicine. I had 1 brain aneurysm, cured. 2 heart attacks, cured. 12 strokes, cured. And after a work accident, 3 failed back surgeries and 100% disabled. Thousands of hours of Counseling.
I surrendered the pain killers and my body, mind and spirit to God and AA to help me with all of it.
It works. It really does.
Another opportunity lies on the horizen. Chinese Medicine and Naturopathic Medicine.
Western Medicine and the US Government have told me, “… this is as good as it gets …”. After 8+ years of chronic back, leg and feet pain, (which these entities do not see, feel nor understand), I am using the McGill Pain index. The daily 45+ pain level s taking it’s toll on me, my friends and my family.
I cannot stop and curtail the Plan and purposes of my Higher Power.
All of these circumstances are gift. I am gift. You, Bernie are gift.
Together, all ‘pain warriors’ can carry the faith forward.

Kyra Holt

The one thing I would tell Bernie is that he’s not alone. And that it does get better. And keep on being a chronic pain warrior.

Pamela Aylor

Dear Bernie, please continue to fight. One second at a time if necessary! We are awaiting updates from the HHS Inter-Agency Task Force. A doctor on that panel has indicated the news is coming after Thanksgiving, so please don’t quit before you see the rainbow after the storm 🙏🏻🙏🏻

Sue Schmoker

For Bernie ~ my new “Pain Pal” ~ I’ve also navigated that dark realm of granting oneself ‘freedom from pain’ via suicidal escape plan. I worked out every detail, left files full of instructions on my desktop, I gained some relief just knowing there was going to be an END to this PAIN HELL. Then I focused on the aftermath: hubby finding me, calling kids, coronor, guilt trips, everyone blaming themselves, yet WHO carries on speaking out for the rest of the helpless chronic pain/illness community: NO ONE! NO BODY REALLY KNOWS but YOU & ME & our fellow chronic pain warriors = WE MUST STAY in this battle to fight for each other because truly NO ONE ELSE GETS IT UNTIL THEY GET IT. Nobody truly understands what we go thru til it happens to them. Take every little baby step you can toward a POSITIVE mindset – whatever works – find whatever you can that brings a smile to your face and climb up from there! For me, nutrition&ROM/strengthening gives me stronger attitude even if all I can do is draw circles w/ my toes or strap 1.5# wts to my arms – FIND YOUR STRENGTH!! WE NEED YOU FIGHTING OUT HERE WITH US! 💪🏼 GOD created YOU because YOU are Valuable ~ May He Bless you w/ PEACE/PATIENCE!

Katie McMenamin Sabo

Bernie you can get through this. You will find a doctor who will prescribe to you. Join a local Facebook support group and ask the members who they use for doctors. I’m about to lose my medicine again, but I’m not giving up hope. I will continue to find doctors or even drive 500 Miles to my old doctor in NYC. It is what it is and it’s not good, but I’ve not given up. Little by little it will get better again…Canda has already disavowed their version of the CDC Guidelines…the AMA has finally come forward and said the CDC Guidelines are dangerous…hold out …don’t quit five minutes before the miracle.

Bernie, every penny of the greedy politicians’ and insurance companies sweet precious money that they have to spend keeping you alive, is a penny they can not spend to attack other pain patients. Give your suffering a purpose, Bernie. Make the anti-life forces lose more money. Make them actually admit that they need us dead because they can’t care for us and still have money left over to rig elections and start new wars. Drain their money until they admit the truth: This was never about preventing addiction. It has always been about insurance money and taxes. Affordable Care can only seem to work, if when people get really sick we hurry up and die. Otherwise care gets expensive and the insurance companies and greedy politicians lose money. Live and drain their money!

David W Cole

Bernie, (I CAN GUARANTEE YOU) you not alone and there are millions of us out here who care about you! If you commit suicide they win, we’re in the fight of Our Lives for our lives. We need your story out here with the rest of ours. I’ve been where you’re at, and I’m not totally out of it yet. I become a pain patient activist when they started taking my pain medication. Please join us in the fight. You can start by going to
ciaag.net and learning how to fight back. Also there are millions of us out here that may have the same problems as you, every one of us is more than willing to do anything we can to help you with your pain. Please give me a call or email me. When I start thinking about suicide or having a real bad day, week or month, you,ll find me out there on Twitter, Facebook, LinkedIn telling my story…
541-621-8397
coonbear4@gmail.com
Sincerely
David W Cole
PS we’re supposed to be hearing of new guidelines coming out from the FDA and HHS on opioid prescribing, that is more pain patient oriented. We had over 3,000 comments on the HHS pain patient oriented comment section for opioid prescribing. 82% was from Pain patients like you and me. There was letters written from Doctors, PhD’ and all the Major Pain Patient advocacie groups. We will bring Common Sense back to pain management. When the new guidelines come out there will be 90 days to comment on them, will be needing your story. Pain patients need to be protected by our government, not our government killing us. Please join the fight we need you.

DANIEL FOLTZ

I know it’s it’s tough. And you feel all alone. But God is there and will help you if you ask him to. The greatest thing and the world is taken away the gift that God gave you. That is the gift of life. You really just have to believe that someone will help you and pray for it. God is the ultimate. He can open doors that you never thought would open. Please do not take the decision to end your own life in your hand. I believe your anger is warranted. I am angry too. All the people that have abused the privilege we chronic pain patients have had in the past with Dr prescribing what we needed to live a quality life. It’s other people the devil has inspired that is the reason we are where we are today. I don’t know if you believe in God. But I can tell you first hand that God is real and he will help you if you ask him to. Stay strong and do everything you can to manage your pain. I will pray for you and your soul so that you may find peace on Earth alive.

BJ A Simpson

Don’t do it Bernie. we all care. We are called Pain Warriors for a reason. We fight this battle daily, you are not alone. Your voice is inportant to all of us. Keep reaching out to others. Seek the positive. ive been fighting the pain battle for a long time, the invisible disability. Please do not let the pain control you, it doesn’t care. but i know everyone reading this blog today does care.

Kathleen Kaiser

Bernie,

I know exactly how you are feeling right now and I hope what happened to me will happen to you. I found myself sitting there with a bottle the lid off and glass of water. I was going to start with my blood thinners whole months prescription of them. Oh yes I had the other bottles out too but I was going to start with those. Funny thing is as sure as I was that I wanted to do it I couldn’t bring myself to do it. I don’t know what stopped me that night. I don’t believe in God because no good God what do this to me. But if you have no one else to remember to not hurt emotionally because of your death and suicide then I pray that you at least get some kind of a pet. And if you’re not allowed to have a cat or a dog where you live get yourself pet rats or guinea pigs or even goldfish. And talk to them when you’re hurting. And please get some therapy. I am!

BTW this just happened to me a month ago. Other than my therapist I have told no one about this until now. And I’m only saying it publicly now to keep you from doing what I was going to do.

Joanna Smitherman

I have been dealing with chronic pain for 29 years now. I’ve had periods where I have felt the same as you…..with all that’s going on now with these new laws I’m back to uncontrolled pain and it is hard but everyone is fighting o try to fix it. You just need to be strong and hang in there for all the good things. Family, friends, nature, a beautiful Sunrise or sunset, just seeing the wonderful things in this world and for all of us that are fighting this fight together you are not alone, we are all in this together

Lisa Hess

Bernie,
Last Sunday I felt just as you are feeling, but it’s not my birthday. Many days I think I can’t make it through when nothing helps for my pain and it just gets more severe as the hours tick by on the clock, I’ve been battling with chronic pain for over 22 years. I worked in horrific pain the first ten years trying to forget about the pain because I couldn’t take opioids with two small children at home. In 2007, I went onto permanent disability after my third spine surgery and that’s when my opioid therapy began. Within two years I was up to 260MME. Having 5 spine surgeries and over 30 failed procedures, opioids is all that works. In 2014, the Government began its quest against opioids. My weaning began this September. Last week I went down to 15mg morphine sulphate ER. If taken before 11 pm, I go through withdrawal every morning between 5 and 6am as its effectiveness never lasts more than 6-8 hours. I can’t fall asleep, so I listen to meditation music to fall asleep. I wake up the next day and life told me I made it through another day. That’s the only way I can live my life. Always a day at a time, many days I may only get through an hour at a time and that’s okay. Our community cares about you, me and all pain sufferers. We take care of each other when in need. The AMA has now walked in our shoes so let’s wait and see what comes from their admissions of errors. It’s a daily struggle, but we have to do it, if not for ourselves then for that one person in your life, whoever it may be, just think of him/her. Please don’t become a statistic of suicide by a chronic pain patient. Don’t let the CDC win this war on us. Keep your fingers typing to help in our fight for the changes we need to set us free from the Government’s failures. Prove you are stronger than they are and fight with us side by side. You’d be amazed how strong you feel when there’s another purpose in your life no matter how small, but you succeeded.
Most sincerely, Lisa Hess.

annie Noordhof

Dear Bernie, I know how you feel right now! My pain doctor retired and I can’t find a doctor who will prescribe anything for my pain. I was on morphine for 10 years and suddenly I was cut off. But, I’ve come to realize that I matter, just like you do! I care about you and don’t want you to give up! If I can keep fighting hon so can you! Please don’t give up, ur not alone.
Hugs, Annie

Andi

Bernie, I soooo understand you!!! I am having the same thoughts about the government!! Americans just don’t seem to understand or believe how we have been slowly losing our liberties. It’s a crying shame how it’s always a “crisis” that gets Americans to again give up more rights, like A Patients Bill of Rights. I want you to know that you and I are here for a reason. I know, I know, I can’t tell you how I hate people telling me that!! But, it has to be true. Bernie, we NEED you here!! We need you to take what strength you can muster and fight with and for us. Giving up means “they” win. I have prayed and prayed that I not wake up tomorrow so many nights, I’ve lost count. Hang on to me and all the other chonic pain patients. We have to have each other’s back since no one understands us better. I can only imagine your situation is dire and I wish I could share with you mine, but not here. Reach out to me, Ed or anyone you can that is in this fight. As bad as we feel, we can contribute something – even if for only a moment of time. This my friend is my present to you… this month will be the HAPPIEST BIRTHDAY and MERRIEST CHRISTMAS you will ever have because you CHOOSE to live and fight another day, another month, another chapter. Reach out for your instructions on how you fit into our fight. We have plenty of room!!