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Bethel Town Crier

A Libertarian View, Local & National

I Tried the New CDC “Guidelines” for Chronic Pain Patients…

I have a rare neurological condition called “Pudendal Neuralgia.” It is so rare that it is not included on the National Organization of Rare Disorders (NORD)’s website. It mainly effects men, and the majority of women who have it usually get it from childbirth. For me, it comes from a mass of scar tissue being wrapped around my nerve, both causing chronic pain and nerve entrapment. The scar was discovered by a 3T MRI performed at the Hospital for Special Surgery in NYC. It is unknown where this scar tissue came from, and I had the condition over a decade before my son was born. Since he was born, the condition has worsened. As of right now, my insurance is refusing to pay for a repeat MRI at the same facility, where a technician is actually trained to locate the nerves my doctor is asking for. The MRI I received at a different facility without that specialist technician was a waste of time and money, as they were unable to even locate the nerves.

I have been in pain management for 6 years for this condition. Because this nerve is responsible for reproductive functioning, bowel control and contributes to being able to walk, it is not possible for my doctor to completely shut the nerve down. Because of the way the scar is on the nerve, it cannot be removed either surgically or chemically. My doctor and I do a balancing act of enough nerve blocks to keep my need for prescription medications low. It is a constantly evolving and active treatment.

As most people in pain management for chronic conditions are now aware, our federal government has taken it upon themselves to be active in the “fight against opioid abuse.” I will not go into the specifics of what they claim and what they want, other than to say that the CDC released “guidelines” that are supposed to “advise” pain management doctors in how they treat their patients. This is unbelievably insulting, as my doctor is very, very well educated and has been in private practice for decades. He doesn’t need some faceless government employee telling him how to care for his patients.

The CDC said that unless a patient is having cancer treatments, is dying or has a disease from a small list they created, they should not receive opiate therapy. Instead, they should take over-the-counter medications like Tylenol or Advil, apply ice packs or heating pads, learn coping strategies and receive “talk therapy,” to get to the route of their pain. They also said that it isn’t even desirable that these patients be “pain-free.” For people without chronic pain, of course they’d think those things.

Since I don’t fit the bill for opiates, according to them, I thought I’d test out their “treatments,” by trading them for my prescription pills for a day to see what happened. It didn’t go well.

I went off of my prescription pain medications, and replaced it with Tylenol. I can only take Tylenol because I take another anti-inflammatory drug that cannot be taken with any other over-the-counter medicines. So that’s what I took instead of my prescription, and I periodically sat on an ice pack. At first it was manageable, but then the pain kept creeping up. The Tylenol did nothing, but the ice gave a little relief. That relief is short-lived, as you cannot keep ice on your body for very long or it will cause damage. Once the pack was removed, the small relief was gone.

I was faced with a problem- how the heck do I make the pain stop?! I couldn’t take more Tylenol or use another ice pack for a few hours. There was no way to get the pain to break.

The pain was incredible. I haven’t felt the pain that clearly for years, because I have been able to manage it. It felt like the nerves were on fire and being pulled on, all at once. It felt like someone was stabbing my legs, and yet there was also a dull, constant underlying pain. There was nothing I could do to make it stop. I couldn’t even sleep, the pain kept me awake for hours, 10 out of 10 on the pain scale, as my doctor would ask me. I got to the point where I would do anything to make the pain go away, but I was out of options.

I did not feel “withdrawal” symptoms. I didn’t feel sick or shaking or hot. I didn’t start craving medication. All I could think about and all I could feel was the pain from my nerve. While I was up in the house I could at least temporarily distract myself, but in bed there was nothing to do but feel. It was the worst agony I’ve felt in a while, and I had a c-section. It was also hopeless. I knew there was nothing coming to make it feel better, that it would not “heal” or go away on its own. Unless I took another prescription painkiller, this was what I was stuck with. I stayed the course until it was 8:30AM and I was still writhing and could not take it anymore. I gave in and took my medication.

I cannot imagine what it would be like to not have that solution, to not have that option of making the pain maybe not go away, but at least lessen. Of not sleeping, not eating and not even minimally functioning because all of my attention is on that one thing- the unrelenting pain.

I understand that there are people taking these pill illegally and dying from them. But I am not one of them. I may not have cancer and may not be dying, but I have a genuine physical problem that causes endless pain. If the ER doctor doesn’t know what my condition is, I doubt the advisors for the CDC “guidelines” have any idea what it is either. They didn’t take people like me into account. Their options are not actual options for people with true, physical chronic pain. If it was as simple as “put some ice on it,” wouldn’t that be enough already? Saying to me that having my pain reduced or nearly eliminated isn’t “desirable” is the ultimate in self-serving, political hubris. It assumes that they, these political professionals, know more about what my quality of life should be than I do. It means that, for them, serving the obligations to politicians who have never even stepped foot in a medical school is more important than letting the actual doctors treat the actual patients.

Make no mistake, I lost someone I cared about to an overdose of illegally obtained medication. But I do not think that my pain management should be altered because of the illegal actions of others. That is what the current government agency attitude is: punishment of the innocent in a flawed attempt to force the guilty to stop their criminal actions.

I don’t believe I have ever done anything in my life to deserve the kind of punishment the government is trying to enforce on me.

 

If you would like more information on Pudendal Neuralgia, please visit these websites: http://www.obgyn.net/pelvic-pain/taking-shame-out-pudendal-neuralgia

http://www.pudendalhope.info/node/2

If you would like more information on chronic pain & its management and the “opiate epidemic,” please visit: http://www.uspainfoundation.org/

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#StosselForum

A few weeks ago I was scrolling through my Facebook feed, looking at all of the pictures of kids and cute animals, when I came upon an ad from John Stossel. It said that the rumors were true, that he was going to have a Libertarian Party candidate forum/debate and that they have a very limited number of seats available to be in the audience. It said that the three top polling candidates had confirmed that they would be there, and it would be taping on a Tuesday night and airing on Friday. I emailed them as fast as I could with all of my information, but didn’t think I could have been early enough to get two tickets.

Then they wrote back. We had the tickets. Between then and actually sitting in that chair I kept waiting for something to happen to stop us from going. Once we were there I was convinced that at the last minute they’d say we were too late, that we weren’t going to be able to go in.

But we did. We lined up outside of Fox Business News’ office, talked to some wonderful Libertarians in the line (it’s massively liberating to be able to talk to people that get your political mindset at the get-go), went through the metal detectors, sat around in the basement eating pizza and trying to keep from being bored. Then we were taken in groups of 15 to the studio, where we got in our seats and waited for everyone to appear. Over and over we went through the “hurry up and wait” that comes with shooting for TV.

The entire time I was there I could not get over it. I was going to be about 7 feet from Austin Petersen, John McAfee, Gary Johnson and of course John Stossel. When they came out and went to their places I had a hard time not squealing like a teenage girl.

I mean, John Stossel is one of the reasons I became a Libertarian. I first watched him in his “20/20” days when he did a program on the inherent gender differences and my Child Development teacher used that video as part of her class. When I got older I read his books and started watching his TV show. While he looks very different on TV than he does in person (he’s handsomer in person), his kindness, wit and humor that you see on-air is identical to his off-air personality. When he interacted with us in the audience he came off as a very honest, curious and gracious man who genuinely cared about our opinions.

Before I came to this debate I had been a long-time supporter of Gary Johnson. When I first saw him debate in the first 2012 Republican debate he became one of my favorites. I’m a registered Republican so I could vote for Ron Paul in the primary, but when the November election came and he had failed to be the nominee, I became very vocal about my support for Gov. Johnson, and I voted for him in the general election. He was one of the reasons I wanted to be at this taping. I was a little biased when I came in, and raised my hand for Johnson when Stossel asked us if we knew who we wanted to vote for. I didn’t know much about McAfee, and less about Petersen.

Without giving too many details (I don’t want to spoil the actual debate for you- trust me it’s worth it to watch), I was surprised to see how much I came to like all three men. When McAfee talks, he’s very transparent about his actually feelings, and he really stresses explaining the logic behind his positions and policy plans. The more I heard from him, the more I liked him. He’s rough around the edges but genuine.

Austin Petersen is a little bit more of a traditional politician. He spoke in compact phrases and used talking points for each subject. He was arguably the most eloquent of the three, and a polished, traditional appearance that bares a slight resemblance to Marco Rubio. Of the three I “booed” him the least. However, this sleekness can be a little off-putting for people who tend to chafe at standard politicians, but could attract more Republicans who appreciate that.

Johnson was his typical self. Easy going and natural, he seems to answer questions like he’s having a private conversation over a beer. He had the most difficulty staying in the time restrictions because he told very elaborate stories full of strong (and sometimes unnecessary) details. He seems to be the most skilled at making responses that straddle both sides of the issue.

By the end I raised my hand again to say that I would still vote for Johnson, but if I had the option to do so I would have said that the debate did change my mind. I went from being completely and totally pro-Johnson to now supporting all three candidates I saw. Each had their positives and their negatives, but all three would be a worthy candidate for the party, and a worthy alternative to the evil and the lesser-evil. No matter which of them gets the nomination (as one of them will most likely get it), they will be getting my vote in November.

And they should get your vote too.

After the taping both McAfee and Petersen met the audience outside of the studio to talk and take pictures. My husband and I took a picture with McAfee (his first choice among the three), who seemed to be appreciative of our desire to be photographed with him. Petersen was in a heated conversation and we had to rush to Grand Central, so we weren’t able to talk to or take a picture with him. Another audience member had said that Johnson was sick and that was why he wasn’t out with the others.

When I am way too excited I tend to act like my dog and lose my brain. I had wanted to talk to the candidates about my being a chronic pain patient, and the “opiate epidemic.” I wanted to talk to them about how terrified the new CDC “guidelines” make me and other patients like me. I wanted to stress how different those of us who suffer from chronic, debilitating pain are from drug-seeking addicts, and how we should not be compared. I wanted to explain how the CDC and politicians lump pain sufferers in with heroin addicts, and how in order to get a large enough statistic for overdose death they used both accidental deaths and suicides, illegal heroin users with legal, rule abiding patients. About how street heroin and prescription pills are not the same thing and shouldn’t be synonymous. But my brain had turned off because I was way too excited to be standing with John McAfee.

Even today I am still completely thrilled and in awe of being able to be part of that audience. If you ask me ten years from now about it, I think I’ll still feel that way.

Please watch both parts of Stossel’s Libertarian Candidate Forum on both April 1st and 8th on Fox Business News Channel at 9PM EST.

Under 12 Can’t be in a Car Alone?

One of the only things Connecticut has going for it right now (high taxes, unnecessary regulation, massive government waste, fleeing population…) is how liberally it allows parents to do what they think is right for their child. There is no age where a child can legally be home alone. The state believes that the parent knows best when that moment happens, and that a parent may need to experiment by letting the child be home alone, and if they aren’t ready not doing it again for a while. It also has very liberal homeschooling rights. Other states have mandatory testing, curriculum or state approval. In Connecticut you just don’t sign your kid up for kindergarten, or just withdraw from the school. That’s it. You’re free to educate your child in the style you think is best.

Governor Dan Malloy has tried to take away homeschooling rights several times, both with now-failed legislation and through “public health” arguments following the shooting at Sandy Hook Elementary. So far he has been unsuccessful, and I hope he continues to be. Decreasing homeschooling rights would accelerate the mass exodus that is already happening.

But there is a Connecticut parenting law that makes no sense- that no child can be left alone in a parked car until the age of 12.

Whenever I see arbitrary ages assigned by the government, I always wonder what magic they think happens on that birthday. The day before their 12th birthday all children are bumbling idiots barely able to speak or walk upright, but once they wake up that magical morning they’re so mature that they’re ready to apply for social security?

The sad part about this law is not just that the state believes that children who are 10- or 11-years-old are incapable of working car doors or unable to scream and kick if someone tries to kidnap them, but that it makes us all report on other parents, “if you see something, say something.”

I had this problem yesterday. I was at the Target in Bethel, and as I walked back to my car I saw two boys inside an SUV, alone, windows down, playing with what seemed to be an IPad. They looked to be about 8 & 10. They were having a ball, laughing and messing with each other in a way that only brothers can. It made me smile. Then I freaked.

Not because they were in “danger,” but because someone might call the police on their mother.

That scared me. I didn’t want this woman, whomever she was, to get arrested for letting two very capable boys stay in the car. I didn’t want them to experience their mother getting handcuffed and taken away, possibly losing her to prison. It would destroy their family. And for what?

They weren’t infants. They weren’t toddlers. The day wasn’t hot, and the windows were completely down. They weren’t “forgotten.” They were young boys, having fun together in the car while their mother got an errand done. In my mind, there was no crime.

But I became terrified for this mother (I’m saying mother, though I didn’t actually see the adult and it could have been a dad or another family member). I debated going over and talking to the boys. I thought that maybe I could give them a note for her, saying something along the lines of “I just wanted to warn you that the law in CT is under 12 can’t be left alone in a car. I think it’s BS, but I don’t want your kids to lose their mom. Please be aware of it, so nobody has the excuse to call the police on you. I’m a ‘Free-Range parent’ and I don’t like this law, but I don’t want to see someone punished for it,” and including my name and phone number.

Instead, I did nothing, because I couldn’t think of how to approach the situation without sounding crazy. To this mom I would just be another person harassing her for the very safe choices she made for her sons. The end result would be the same: a stranger yelling at her and telling her not to do it again OR ELSE. But I do regret not saying anything, because this mom could very well not know the law, and not knowing is not a valid excuse in court for doing something.

It’s a sad day in America when people have to be warned of what the law is so they don’t break it, when no harm has been done and most likely never would have. And it’s even sadder that parents like me are terrified of strangers, because they have the power to take your children away if they call the police on you just for doing something they don’t agree with.

Nobody parents the same. But having to constantly look over your shoulder in public to make sure nobody is shaking their head at you with their phone out is no way to live. The police are not some neutral group who will assess the situation and say “you know what, your kid is 11, no problem, have a nice day.” They have to enforce the law as it’s written which means they are not neutral at all. Even if no charges end up being brought against the parent the children STILL have the trauma of seeing them taken away with force, cuffed and arrested. In some cases this small event could land them in a foster home for a few days. Nobody wants that for a child.

I want to live in a world where nobody delights in acting like the Stasi and calling the police on good parents who just don’t agree with other people’s risk-benefit comparisons.

If that mom ever reads this, I honestly did not judge you. I just really, really didn’t want you to get arrested for a choice I think you have every right to make.

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