Chronic pain, opioids, addiction and controversy

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I’m not sure how I should present this. Do you want it kind, sincere, and respectful, or do you need it blunt, open and firm? Do you want it me for you, or you against me, us? Do you want it white or black? Love, care and light or a little profanity to remind you that the world isn’t one way or the other?

You can judge me, you already have. Maybe you need something to judge me for. I refuse to allow you to add me to any negative category. I’m not a little kid anymore and I won’t be silenced because you think your ideals are above someone else’s. I’m heading on 50.

I’ve been on and off opioids since I was 22. Just because my life sucks and I’ve dealt with surgery after surgery, procedure after procedure, diagnosis after diagnosis, and I’ve been intractable for 15 years doesn’t mean I chase the pain to get the medication. I haven’t. There has not been a single time that I went seeking medication I shouldn’t have. My random pee tests are clean and prior to ever being injured my work took my hair, follicles that went back a year for drug testing. And while it’s none of your business in situations like this, where the anti opioid groups are stead fast against that kind of pain relief, I’m compelled to tell my business to justify my reason for taking it and the reason the physician prescribed it.

My pill is my SCS Spinal Cord Stimulator. It has been since 2006. I use a single low dose partial agonist and partial antagonist pain medication. There is no high. I take nothing for break through. I take Zonegran 100, 2x and Cymbalta 30, 1x. Nuvigil (Sleep disorders- Central Sleep Apnea with Cheyne Stokes, + Obstructive. Mixed/Complex/Auto Servo Ventilator (ASV) and maintenance for high blood pressure, Lisinopril, Hydralazine and Lipitor. There you go, now you know it!

If you’re a physician you have to know that blood pressure can be compromised by pain levels. Well.. at least that is what I am always told by physicians unrelated to one another, my blood pressure is too high because of physical pain.

Interesting right? Maybe not.

Dr. Andrew Kolodny replied to my post on Twitter, stating, paraphrasing, not a direct quote, education and personal responsibility doesn’t make opioids more effective or deter abuse.

Really? Then why is there a CDC work group to attempt just that? I’m not going to go into specifics because you can all find it for yourself, and I’m not going to give the run down of the call because it’s public record.  I was on that call. See the Federal Register.

One physician shared that she prescribed not knowing? For real? You didn’t know with your education and training that prescribing opioids were… .um opioids? (Where was your education and common sense on that one and if you weren’t educated as you claimed, why didn’t you seek it for the benefit and well being of YOU and YOUR patients) Okay, so… that was your attempt to show the call how horrible the opioid is and minimize PERSONAL RESPONSIBILITY. Backfire!

Education is crucial. Point made.

Hate me yet?

Dr. Kolodny states that personal responsibility doesn’t matter. Really Doctor? That’s a lie! Because when someone falters you, yours or someone you’re advocating for it absolutely matters.

My nature is to say I’m sorry, I’m sorry for all of you who’ve lost. Lost to addiction, and death. But I cannot be sorry that I’m fair, even, and compassionate for the suffering AND regardless of what they are suffering with or for.  hm, well I don’t want to call persons weak, just unable to hold back heading for another, whether it be a chemical hook or simply choice.

Is it bad word time? For fuck sake be responsible for you and yours! If your child was a minor at the time of receiving medications that turned out to be harmful, you were responsible. You, the parent, or guardian! If the child was an adult of legal age in their jurisdiction, they are then responsible. And.. parents know better than anyone, more than a physician, more than a pharmacist, that something is up or wrong with their offspring. Minor or adult, we know, and if we claim we never did we’re not only lying to others but we’re deceiving ourselves. If you never saw the signs? Ouch, you just didn’t care to look for it. And if you couldn’t see it? Have a little compassion, how could you ever expect the doctor to see it? Because he is a doctor? Not true, we’re parents. 15-30 minutes a doctor visit at best compared to our lifetime with our kids. Minutes upon minutes, hours, days, weeks, months, years.

Hate me yet?

If my child went to the doctor, claimed pain, and I don’t even care at this point in writing this if the kid was in pain or wasn’t, but took the Rx, filled it, took the medication as prescribed, misused it,…and then decided to throw back (you know, toss some alcohol)

My child is to blame. Not the physician! We seek care from doctors, they do not seek us out. We tell them what we tell them and they base the prescription of the truth or shit we give them. We do not have to take that Rx to the pharmacy, we do not have to fill it and we certainly don’t have to put it in our body. It’s not fair to call them pushers. How can they push, when a person went to them? A pusher is someone who seeks another out to push a drug on them.

Does it even matter after all this if the medication was taken as prescribed? Nope! Because the only way to overdose is to misuse. If the doctor prescribed a medication adverse to another medication the patient is already taking I would be advocating for you and the error. Dang, I feel bad for back hands I’m going to get for this, but doesn’t anyone get it?

Maybe no mix, maybe no alcohol, great! Good job! Still the only way to overdose is to misuse unless another adverse complication was present.

I’m disgusted by a world that rather blame someone else than accept the consequences of their own actions. Oh and yes I’ve been hurt. Damaged in fact from other’s irresponsibility and I do advocate for that change but I don’t harm others on behalf of myself.

According to Dr. Kolodny, personal responsibility doesn’t matter. Does this apply then to vehicles, officers, surgeons, pilots? I think I know his answer, of course, but he’s already let them off the hook. And hey that’s okay! After all, why should anyone be responsible for anything they do. Blame it on the traffic, the felon, the patient, or the passengers.

Contrary to what it may seem, I do respect the Doctor. I’m not inclined to agree with his adamant perception of placing all people who use opioid relief as addicts, or heading for addiction. Sorry, don’t care what a few images of the brain or a poll might indicate. There’s billions of people in the world, millions on medications, and a fraction to insinuate possibility or potential from dependency to addiction.

Pain in general causes advocacy. Loss instigates the passion to make a wrong right. So while chronic pain patients are being punished, ridiculed, humiliated, stigmatized, belittled, what about your pain? Your mental pain urged the controversy against opioid managed pain care versus loss of livelihood.. Ours is physical, yours is mental and emotional.

I have a hard time understanding why any of you care what we take when you won’t be there if we overdose or commit suicide. You’re not there to tell someone striving to make it, good job, proud of you. I have a hard time being used to make your point and profits.

I have a hard time with you looking down at us, when you don’t even know us. You don’t even want to walk in our shoes to feel us. But you want us to walk in yours and feel you.

Maybe, instead of saying “people” which implies all (It is the plural form) how about some, many or most (in your opinion) otherwise you are separating us from you. You make it as if everyone is horrible, addicted, heading for addiction, stronger meds, etc. Everyone but you and yours (your groups).

Then we speak out and you become holier than thou against us whiny, complaining, lazy, drug seeking, pain complaining “people”.

Guilt is the hardest human emotion to overcome.

All we had to do was work together, all we had to do was listen to one another. We could have cared for each other. And in the long run, the children might have truly been educated to know better.

When we get a physician as Dr. Kolodny implied stating education is meaningless? I have to disagree. Education educates, I’m trying not to roll my eyes because he kinda dummied himself down on that. No disrespect intended.

You may dislike me, think I’m a b*tch, judgmental, or talking too much (not true, you’ve already judged me/us…  and quite vocally I might add, news, columns, etc )  and I’ve only just begun, but…

I still love all of you and would fight for YOU if no one else did.

That’s the difference between you and I.

 

I wish you all well,

And enough.

~Twinkle V.

 

 

 

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Action Alert: Physicians for Responsible Opioid Prescribing (PROP) We must stop this Petition!

October 11, 2012
Greetings!The RSDSA would like to make you aware of a petition currently before the Food and Drug Administration (FDA) that requests labeling changes for opioid analgesics (narcotic pain medications). Since many individuals with CRPS rely on opioids as part of their medication regimen, we wanted to bring this petition to your attention.

The petition, submitted by Physicians for Responsible Opioid Prescribing (PROP), requests three specific changes to opioid analgesic labels:

1- That they no longer be prescribed for “moderate” noncancer pain, but only for “severe” noncancer pain

2- That the maximum allowable dosage per day be equivalent to 100 mg of morphine for noncancer pain

3- That this medication can only be used for a maximum duration of 90 DAYS.

What this petition appears to mandate is a “one size fits all” prescribing mentality which DOES NOT benefit the chronic pain patients in general and CRPS patients in particular.

The RSDSA has chosen to oppose the PROP petition on behalf of you, our members. On Wednesday, October 10th, The RSDSA sent this opposition letter to the FDA.  Cick Here to read RSDSA letter . 

For those of you who would like to send your own individual response regarding PROP to the FDA, we encourage you to stress the specific details that your medication enables you to do that without it you would be unable to do. We suggest you use the following language to keep the message clear: My name is  _______. As a person  who suffers with the chronic and  yet incurable pain of  CRPS,  I ask the FDA to deny the PROP petition. I use opioids as prescribed by my physician allowing me to function better and partake in life in ways I would be unable to do without this prescribed care.

To send your comments to the FDA click here.
The category to use for your response is Individual Consumer.

Your immediate action to this issue will make a difference. To read the PROP petition,
Please forward this email along to your friends and loved ones.
Should you have any questions or would like to receive further information, please email or give me a call.
Sincerely,
JB Signature
Jim Broatch
Executive Vice President and Director
RSDSA
877-662-7737
203-877-3790
 Original Article- http://myemail.constantcontact.com/Urgent-Action-Requested–CRPS-Treatment.html?soid=1101383336163&aid=UTz5u591sNA