Tired of the fight for treatment/DIC & chronic pain

Posted by cb772 @cb772, Oct 7 6:33am

Hello, all: Have any of you had an episode of D.I.C. following surgery or another trauma? It's a rare bleeding disorder that has a survival rate of around 15%. I experienced it immediately after my 3rd back surgery in 2007. Since so few people survive, the medical field knows very little about DIC or it's long-term effects. The after effects, plus several failed surgeries that left me with chronic pain in my back & painful neuropathy in both feet, have led to me living in a recliner or wheelchair. Nothing helps and at 67 years old, I'm ready to give up the battle. Doctors don't know how to help & they keep screwing around with my meds. My pain level stays at a 9+, but with 5 to 6 10mg tabs of Norco per day, muscle relaxants & 2 mg of Clonopin daily, the pain number goes down to 7 & I can handle that. In my area of SE Florida, there were pain clinics on every block in the mid 1980s for several years where you could show up & a doctor would ask a couple questions & prescribe whatever you asked for. This legal drug trade went on until the DEA forced the doors shut on thousands of pain clinics, many doctors lost their licenses & Walgreens pharmacies were nearly shut down & could not fill scripts for opioids or anxiety meds for many years. Today, they have very limited supplies & ridiculous restrictive rules on dispensing opioids. Pain clinics push useless (for me) shots & conservative non-opiod treatments. At 67, I should be able to get the meds I know work for me, but I can't. The anxiety & depression are overwhelming. I really don't care if it's dangerous to take Benzies & opioids together. I've taken them for years exactly as prescribed & was able to live life instead of just existing. The DIC has left me with slowed responses, stuttering, jello-like legs & body leading to many falls. I was laid up last year with a severely broken ankle & torn tendon requiring 2 surgeries. After 7 months in a non-weight bearing cast, I was able to start P.T. but 3 weeks later another fall broke all the bones on the top of the same foot & was back in a non-weight bearing boot for 4 months. This started on January 23rd, 2019 & lasted till November, 2019. I continue to have lots of falls & recently broke a bone near my little toe, but I didn't get treatment for it because, like I said, I'm tired of the battle & life. Thanks for "listening".

@cb772 how can we do something about this crazy trend to eliminate benzo’s and pain medication? I’ve tried many substitutes for pain meds and benzo’s that either didn’t work or had intolerable side effects. We’ve got to be able to make our legal system understand those of us that don’t abuse the medication and really need it to have even a minimal quality of life. Help! How do we do it?!

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@bustrbrwn22 , I wish I had an answer but I don't.

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@cb772
Unfortunately, as I am learning, your horror story is, sadly, not that uncommon. Hideously and disgustingly high pain levels that people like yourself are having, while access to the meds you absolutely need to help you at least live life in a somewhat more acceptable fashion is restricted by Big Dumb Government to supposedly "protect" a bunch of drug addicts from themselves. Then those addicts perpetrate crimes on innocent people in order to get the drugs anyway, only not medical grade but street grade which is also more dangerous for them. I think the Scandinavian model is the only way to go. Legalize EVERYTHING! The drug war is a lost cause and only hurts people like you, who never deserved to be treated so.

I am sad, very sad, to hear your story. I wish you could find the strength to endure and I hope some good thing will come to you to paint your life with some light; you so deserve it my dear. Best to you, hang in there. Hank

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I so totally agree and am in awe of your succinctness and strength to write this. Is there any movement we can start to right this ridiculous wrong that was somehow created? There has got to be.

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@jesfactsmon

@cb772
Unfortunately, as I am learning, your horror story is, sadly, not that uncommon. Hideously and disgustingly high pain levels that people like yourself are having, while access to the meds you absolutely need to help you at least live life in a somewhat more acceptable fashion is restricted by Big Dumb Government to supposedly "protect" a bunch of drug addicts from themselves. Then those addicts perpetrate crimes on innocent people in order to get the drugs anyway, only not medical grade but street grade which is also more dangerous for them. I think the Scandinavian model is the only way to go. Legalize EVERYTHING! The drug war is a lost cause and only hurts people like you, who never deserved to be treated so.

I am sad, very sad, to hear your story. I wish you could find the strength to endure and I hope some good thing will come to you to paint your life with some light; you so deserve it my dear. Best to you, hang in there. Hank

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I absolutely agree about the stupid drug war! We should legalize everything. People who write on these sites deserve whatever med they need to feel better.

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@jesfactsmon

@cb772
Unfortunately, as I am learning, your horror story is, sadly, not that uncommon. Hideously and disgustingly high pain levels that people like yourself are having, while access to the meds you absolutely need to help you at least live life in a somewhat more acceptable fashion is restricted by Big Dumb Government to supposedly "protect" a bunch of drug addicts from themselves. Then those addicts perpetrate crimes on innocent people in order to get the drugs anyway, only not medical grade but street grade which is also more dangerous for them. I think the Scandinavian model is the only way to go. Legalize EVERYTHING! The drug war is a lost cause and only hurts people like you, who never deserved to be treated so.

I am sad, very sad, to hear your story. I wish you could find the strength to endure and I hope some good thing will come to you to paint your life with some light; you so deserve it my dear. Best to you, hang in there. Hank

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Thank you, Hank. Everything you say is true. I wish the war on drugs would end, too. I'm trying to hang in there but it's getting really difficult. I know others have painful burdens to bear and my heart goes out to all of them. You're a compassionate man. Thank you.

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@bustrbrwn22

I so totally agree and am in awe of your succinctness and strength to write this. Is there any movement we can start to right this ridiculous wrong that was somehow created? There has got to be.

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I wish there was a way to right the wrong!

Liked by migizii, Hank

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I, too, am inconvenienced and also have to endure pain because corrupt Big Pharma, doctors, pharmacists, drug dealers and others have created an opioid epidemic in which 50,000 people a year, repeat, FIFTY THOUSAND young lives are lost each year. A "stupid drug war"? REALLY? I have a very close friend who lost a 32 year-old son to opioids. Balance your pain against parents who are burying their children!!!

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@scruffy1

I, too, am inconvenienced and also have to endure pain because corrupt Big Pharma, doctors, pharmacists, drug dealers and others have created an opioid epidemic in which 50,000 people a year, repeat, FIFTY THOUSAND young lives are lost each year. A "stupid drug war"? REALLY? I have a very close friend who lost a 32 year-old son to opioids. Balance your pain against parents who are burying their children!!!

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@scruffy1
I do understand what you are saying. And I am sorry for your friend, that is an awful thing to have happen. It's terrible that anyone dies from something as senseless as a drug overdose, particularly young people with so much potential ahead of them. But if you think this "war" created by perpetrated by politicians is the answer to that problem, just look around. That war was lost the day it began. That is how it appears to me. Again, I am sorry for your friend's loss. Hank

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@scruffy1

I, too, am inconvenienced and also have to endure pain because corrupt Big Pharma, doctors, pharmacists, drug dealers and others have created an opioid epidemic in which 50,000 people a year, repeat, FIFTY THOUSAND young lives are lost each year. A "stupid drug war"? REALLY? I have a very close friend who lost a 32 year-old son to opioids. Balance your pain against parents who are burying their children!!!

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@scruffy I deeply apologize for your pain. I do not mean to minimize your suffering by my trying to obtain pain meds that will allow me to have any semblance of life whatsoever. Sometimes the pain is so bad I can only walk to the bathroom and back. Please accept my sympathies.

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@cb772 Carol, Incredible description of your illnesses here. Remarkable, almost unbearable to read. Just thinking of you, praying for you, and I have no idea what to say to you. Just that I get it. I know it. I feel it. Just so sorry. Lori Renee

Liked by migizii, Hank, cb772

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@bustrbrwn22 thank you but no need to apologize. I just think we have to weigh our inconvenience against the loss of life because of opioids. I drive almost 1.5 hr. to my pain doc just to satisfy the laws about seeing patients quarterly to whom you are prescribing certain meds. We need to get people in pain their meds but we also need to have that war, IMO. I've been appealing to the DEA since my father needed pain meds. I knew the Administrator at the time and she assured me that monthly visits would never happen under her watch, but her watch expired.

Liked by Hank, cb772

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@scruffy1

@bustrbrwn22 thank you but no need to apologize. I just think we have to weigh our inconvenience against the loss of life because of opioids. I drive almost 1.5 hr. to my pain doc just to satisfy the laws about seeing patients quarterly to whom you are prescribing certain meds. We need to get people in pain their meds but we also need to have that war, IMO. I've been appealing to the DEA since my father needed pain meds. I knew the Administrator at the time and she assured me that monthly visits would never happen under her watch, but her watch expired.

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@scruffy1 totally agree. How did you start petitioning our “fighting the good fight”?

Liked by cb772

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@bustrbrwn22

@scruffy1 totally agree. How did you start petitioning our “fighting the good fight”?

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@bustrbrwn22 I knew and worked with the Administrator when she was an assistant U.S. Attorney and I was an investigator in her judicial district. Years later, after she held the Administrator position, I wrote to her with my concerns. I explained that my father needed pain meds but was unable to travel to a doctor every month as was proposed back then. She assured me that the proposal wasn't going to be passed. And, it wasn't… until a decade later. But, you don't need to know anyone to write to your Congressman or Senator or the head of DEA, FDA, etc.. And, encourage those here on this site, and others with similar problems, to also write. Hard copies, rather than emails, are more effective because you can't just delete a letter. Expect a reply, but don't expect a member of Congress to actually see what you write. Their staffers keep a tally of "for and "against" certain issues and give numeric updates as to the changes. And don't forget that many issues are State issues, so write to those representatives, also. You can post on Facebook or other social media and encourage people in your district to support it. Or, email a form letter and encourage people to copy and sign it and mail it. Or do all of those things. Remember, the #1 priority of someone in office is to be reelected to that office. Pressure them.

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@lorirenee1

@cb772 Carol, Incredible description of your illnesses here. Remarkable, almost unbearable to read. Just thinking of you, praying for you, and I have no idea what to say to you. Just that I get it. I know it. I feel it. Just so sorry. Lori Renee

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Lori, thank you so much! You're in my prayers, as well.

Liked by lorirenee1, Hank

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