Pain Awareness Empowerment

POPF September is pain awareness month

For a healthy person, pain is a warning signal that something is wrong. For a chronic pain patient, it is a state of being. A VERY unpleasant state of being, but one none the less they identify with because they cannot avoid it. They wake up in pain, work all day in pain, sleep in pain if they can sleep at all.

POPF September is pain awareness month
POPF September is pain awareness month

Living in pain is not a small feat for anyone. Existing this world, transgressing the difficulties of being disabled due to an invisible illness or even those with it visible, it is a difficult and awkward time of life. So groups like iPain and US Pain Foundation have a month they celebrate those warriors who keep on fighting, called pain awareness month. That month started yesterday.

We all likely know someone in pain, but may not even know it. So I challenge each person to post something about how you support those with chronic pain, as you would someone with mental illness or diabetes. Help them know that they can come to you if they want to talk about it.

The best thing we can do in our lives is empowering others and empower ourselves. Learning doesn’t have to stop when we graduate high school or college. We have opportunities EVERY DAY. So I challenge you to LEARN about others conditions. You might just save a life knowing more about someone else and what they deal with.

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Omaha drug trial shows promise for pain condition

OMAHA, Neb. —
An Omaha researcher is conducting a drug trial for a drug that’s already being prescribed for a chronic pain condition for patients in Europe.
Dr. Robert Recker with Creighton University is looking for patients with Complex Regional Pain Syndrome to test the drug which comes from a class of drugs normally used to treat osteoporosis. Recker said CRPS is rather "An area of the body starts to have really severe pain for no reason. You look at it on x-ray, no matter how you look at it, you don’t find anything wrong,” said Recker who’s testing an intravenous treatment called Neridronic Acid.
“I can't deny the fact that the study in Italy cause it to be approved for it. Apparently it removes the pain quite strikingly,” said Recker.
Ron Dulas, of Lincoln has lived with CRPS for more than six years, with debilitating pain in his leg, travelling to his hands. The pain started after back surgery, for no apparent reason.
“It was horrendous. It's like someone took a hammer and just smacked your foot,” said Dulas, who’s on a number of prescription pain relievers and has been for years. He eventually had to quit his job restoring furniture at the State Capital Building, in Lincoln.
“It stops you in your tracks, you cannot breathe,” said Dulas.
Dulas was hoping to be approved for the drug trial which includes 4 infusions over the course of a week, along with vitamin supplements and clinic visits for a year.
“To get out of the situation I’m in, I’ll do anything,” said Dulas. Who learned just days ago, because he has a pacemaker he cannot be part of the trial, but may benefit from the drug if it’s approved for use in the U.S.
If you know a person living with Complex Regional Pain Sydrome, they can contact Dr. Recker’s officer for more information on the study. The phone number is 402-280-Bone, or 402-280-2663. All expenses are covered for participants.

Original post and video found here:
Last Updated when copied over: 10:47 PM CDT Aug 6, 2017 by Julie Cornell

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Medicine Running Out, Funds Low

Question about Medicine

Let’s face it, we are not all blessed with great genetics and many of us need medicine. We aren’t all healthy, even before the CRPS. Some might have heart problems, some might be diabetic, some might have been fighting cancer. But for those few blessed before but are now fighting the many comorbidities of our condition, we have medication that’s required to function what little we can.

Question about Medicine
Question about Medicine

I am blessed with only a traumatic brain injury and heart issues that require medicine. I say blessed because many of our pain brothers and sisters are fighting so many more issues than I. But that doesn’t change the fact without these medicines my life will be directly impacted. I NEED them to function.

Two months ago I became not only broke, but destitute. I cannot afford an apartment let alone my TBI medicine. It is $270 a month with most pharmacies, $220 was the cheapest I found a few years ago from a wonderful mail order place in Iowa, Scott’s Pharmacy. Without this medicine I cannot read and at times I’ll “fade out” because I have mini seizures. Nothing serious to most but could be detrimental if at the wrong time like when driving. A while so far I’ve been lucky, but that won’t be forever.

So in my extremely rough spot I searched for alternative options again; I found Blink. Now, please note, they provide incentives for sharing your code to your friends. They provide money incentives for testimonials for their site. I am doing neither. Because this article is for you. Not for me. Our reason for sharing this information is in hopes that if you’re in dire need and want options that you have a few right here in this article.

Now Scott’s Pharmacy is a bulk ordering company similar to Blink. And I know as a fact they must follow HIPAA guidelines and protect your patient information. But Blink, as I’m about to tell you, while EXCEPTIONALLY less in cost, I’m unsure of their obligations to protect your medicinal privacy as a third party provider who refills the supply your local provider might fill.

So I will err on the side of caution and suggest until you verify your personal information is protected, do not order medicine you might be concerned about someone knowing you are on. I have not yet found any information to say either way. But better extra caution then surprises, right?

Now I have Tramadol as as prescription and I know it’s available through them. But with the new and improved war on chronic pain patients, I do not know if certain opioids are even found in these lists. But again, I’d err on the side of caution and not order anything unless you’re OK with the world knowing you’re on that medicine. (Let’s be honest hackers happen.)

So, my $220 prescription, was less than $28.

Ok stop and read that again. Almost 1/10 of the cost.

My Atenolol for my heart, a $4 a month prescription at Walmart, was less than $8 for a 3 month supply.

Now, they may not work with your local provider, you might have to drive 50-100 miles one way to get the medicine. But even with a truck getting 10 mpg, that’s 20 gallons of gas round trip. If gas is $4 a gallon, that’s $80. If you have a medicine like my Keppra, your STILL saving $100 driving all that way.

But there is options out there. And that’s why we’re sharing about them. Because I was lucky and fell across this and had NOTHING to lose if they stole my $28. But they didn’t. And it’s helped improve my situation, despite losing everything else.

And for those who want to try and help a fellow patient out, blinks referral code appears to be 8 characters, all uppercase, numbers and letters only.

Just saying, $5 for a random patient could be just what they needed. (And again, no not sharing my code.)