Strangulation on Medicine: My Life as a Pain Patient

See also: An Open Letter to Dr. Kolodny, The Truth About the Opioid Crisis, and A Rock and a Hard Place: Pain Patients Suffer from Heroin Laws Fallout

Imagine, if you will: Waking up morning after morning, with sudden, inexplicable, extreme pain in one side that leaves you bedridden for a few hours, then a few days, a few weeks, a whole year.

Imagine not being able to find the source of the pain. Spending every week with a different doctor. Spending at least $200 on each doctor. Trying at least one new prescription every month. Spending at least $30 on each prescription. Watching the medical bills pile up, knowing you are the sole cause of each one.

IMG_9121_1a_watermarkImagine watching your young children struggle to learn to live without you. Being unable to volunteer at your child’s school because, although you have the time, you don’t have the physical stamina. Being unable to attend most school events, and seeing the disappoint on your children’s faces when you have to tell them, “I’m so sorry, baby, Mommy just can’t do it.” Spelling bees, science fairs, choir concerts, end-of-school picnics, and most painful, 5th grade graduation.

Imagine seeing your spouse become literally bent over and graying early under the stress of being essentially a single parent, plus the stress of being a full-time adult care-giver, while holding down a full-time job, and doing all the cooking, cleaning, and fixing, while also going to school part time.

Imagine being unable to visit your beloved, aging grandparents who live 5 hours away. Or being unable to visit best friends who live 1 hour away. Being unable to attend weddings of dear family and friends because they are “too far away” at 30 minutes to 1 hour. Being unable to travel more than 15 minutes by car. Being unable to walk more than 10 minutes-on a good day.

Imagine being a house-bound invalid at age 31, feeling your muscles becoming a little weaker every day. Swallowing your pride to buy a cane, and using that cane (in public) to support your bad leg on those lucky days you do get out. Imagine shopping for electric wheelchairs since not walking seems to be the new normal, and you are being driven crazy from being stuck inside for so long. Imagine shopping for walkers at age 31. Imagine the embarrassment of personally knowing many people, twice your age, more active than you.

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Me, my dog, and Poe. This is where and how I spent much of my life for 2 years.

With “Care” Like This…

Imagine having your insurance company refuse to pay for things that might shed important light on your problem, or help make it better. Things like MRIs, prescribed back braces, insurance-required physical therapy, any number of expensive drugs or treatments.

Imagine having your primary care doctor whom you’ve known for 7 years, refuse to treat your pain, because new laws prevent him. Imagine him suggesting you are overreacting,and your pain can’t be as bad as you say, even though he just looked at your x-rays and declared your problem will never get better, and cannot be fixed.

Imagine your doctor prescribing a medication that does nothing for your pain, but causes brain dysfunction in the form of a manic episode. Imagine that when you tell your doctor this, he suggests you see a chronic pain specialist who cannot see you for at least 1 month, will insist on giving you invasive, risky, epidural (link) injections that may or may not help your pain, but are terribly expensive and painful.

Imagine your doctor, after telling you you will not get better, brushing off your request for disability papers because you are “too young”. Imagine your doctor brushing off your request for an expert opinion in the form of a neurosurgeon referral, or brushing off your request for further testing.

Imagine, if you will: Being unable to think or work. Imagine feeling so very tired all the time, or anxious too often, or deeply depressed. Imagine feeling worthless, no, more than worthless, a real burden on the ones you love most financially, emotionally, mentally, and physically. Imagine wanting to end your life, and planning it, at least once a week. Imagine crying for hours at a time, because there seems to be no end to the pain, the frustration, the uncertainty, the bills.

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The Solution to Your Problem is Simple…

Now imagine, if you will: At the end of the year, finally having your chiropractor (whom you have been seeing for insurance-required, but not insurance-paid physical therapy) order an MRI. Imagine, after a fight with your doctor who was annoyed you went over his head and had an MRI, while also insisting on a neurosurgeon referral, finally landing a doctor who reads the x-rays and MRI, understands your problem and (could it be possible after all this time!?) fix it.

Imagine hearing the news you were dreading, that you will need a spinal fusion (a major, delicate surgery, with a long recovery) and discectomy; that your lowest vertebrae are separated, and have been for years and years; that this has allowed a spinal disc to slide out of place, forcefully compressing a nerve; that this is the cause of your inability to walk, to ride in a car, to sit comfortably, to sleep through the night, to live well. Imagine scheduling your surgery and feeling like all the pieces are finally falling into place; there is a light at the end of the tunnel!

Imagine, if you will: A slow recovery that begins with immense pain and not being able to walk, to dress yourself, to bathe yourself, to lie down, to sit outside. Imagine feeling very old and very frail. Imagine every month expecting to turn an invisible corner in pain relief, energy, and movement ability, but only seeing little, gradual bits of progress here and there. Imagine that month 3’s post-op big accomplishment is going to the store (accompanied by a driver, because you have hardly driven in well over a year), by using the store’s electric cart and your back brace. Image month 4’s big accomplishment is making it through a brief session of physical therapy without needing a 3-hour nap afterwards.

The Right to Suffer:

Imagine everything you do/can do depends on how well your pain is managed: Getting necessary and wanted exercise; getting (finally) out of the house; getting around the house; sleeping through the night; doing a few light chores; having the energy and ability to focus on things you love like reading, playing board games with the kids, having visitors over, sitting in your garden swing, or just laughing.

Now imagine, if you will: Your surgeon, the only one familiar with your case, your surgery, your history, not legally being able to manage your pain after just 3 months. Imagine being referred by your surgeon to your primary care doctor, who refuses to treat your pain (but only tells you that after an office visit), and refers you to a chronic pain specialist who cannot see you for at least 2 weeks, who has little knowledge of how to treat acute (short term and surgery) pain, who has little knowledge of spinal fusions or surgeries in general, who changes your medication 7 different times in 3 months, who prescribes super-expensive medicines that you cannot pay for, who prescribes medicines that make you so sick, you are either in bed or in the bathroom all day, meaning your spouse must work from home to watch the kids, making you worry about his job security, which makes you anxious for how to feed your kids.

pain scale

Imagine this chronic pain specialist under-medicates you for 3 months, insists on treating periodic, break-through pain with 12 and 24 hour narcotics which make you sick, which are MORE likely to produce addiction. Imagine, that despite doctors’ promises about proper pain management, when you finally refuse to be a guinea pig anymore, and ask for the simple, effective, economical medicine option, you are treated like an addict despite all the urine tests you’ve taken to prove you are not, despite the good faith contract you signed at the office just to be seen, and despite all the paperwork that double-checked your claims, medical history, and medicines across your entire provider network–hey, whatever happened to HIPPA laws?

Doctors said that the vast majority of the patients who need pain medications don’t abuse them. Source

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The way is shut.

Imagine having a pain specialist who you cannot get in touch with for 3 days when your latest prescription, filled only 3 days prior, gave you diarrhea, chills, major migraines, insomnia, and finally a psychotic episode in which you cried for 3 hours and stormed out of the house at 5am, pacing the front yard like an animal as your spouse watched horrified from the front door.

Imagine having a pain specialist who accuses you of breaking your signed pain contract with them, because you told them in order to make it through the weekend, you had to cut old medicines from right after the surgery in half, since you couldn’t get in contact with them. Imagine having to tell them this, because at first they thought you hadn’t taken anything over the weekend, therefore you didn’t “need anything now”. Then imagine them dropping you as a patient like a hot rock.

Imagine:

Without pain management, not only can you not do what you need to or want, you begin to get cranky. You lash out at your kids and spouse without reason, like an animal in pain, because that’s what you are. Imagine finally collapsing into a tired, depressed heap, contemplating the cleanest ways to end your life, to end this pain for good.

Imagine:

  • Knowing that government officials who don’t know you, who are not doctors, who don’t see your pain, assume you will abuse the legitimate medicines that make life livable for you. 
  • Knowing that these officials have made it effectively, though not “technically”, impossible to get what to you, is truly a life-saving medicine. 
  • Knowing that the “stats”, “facts”, and “research” that are behind the new laws that have made it impossible for you to get help, are very, very skewed and without actual merit. 
  • Hearing glib, pain-free people cheerfully announce that exercise, meditation, and a funny movie will remove their pain as well as any pill. 
  • Knowing that real drug abusers who have been breaking laws, can get their addiction meds, often free, while your legitimate, provable, documented, legal medical condition is treated with contempt by law makers. *Sign a petition here! 
  • Knowing that pain patients all over America, “the land of the free”, are needlessly suffering so that some politicians can look good in photo ops and in newspapers. 
  • Knowing that we don’t allow animals to suffer like the laws have made actual people suffer. 
  • Knowing that pain patients have a small voice, because they are too broke from trying to follow the burdensome laws suddenly imposed on them for things outside of their control; because they are too tired from fighting pain and doctors all day, all week, all month, all year long, to use the last of their energy to make their voices heard in politics, rather than spending time with family.

Imagine:

Spending all day trying to find another pain specialist, but being told by the first promising 4 they would not take acute pain cases, and could not recommend any one who would. Imagine calling your surgeon, desperate for help but being told their hands were legally tied. Imagine calling your primary care doctor, but being told they would not do anything, and to go to the ER if the pain “was that bad” (it’s not; you don’t need morphine injections, you just need something a bit stronger than acetaminophen, and you certainly don’t need an extra $6,000 medical bill).

Imagine not being able to take even ibuprofen, per your surgeon’s instructions, or being afraid of liver damage from too heavy acetaminophen use, or being on the phone for 5 hours, trying to find someone, anyone who can or will help.Imagine hanging up exhausted at the end of the day, and having nowhere to turn.

While nerve pain seeps into your side, your muscles begin to stiffen, and you desperately try to ward off an aching back and tailbone (you know, those parts that were recently severed and have bones, new hardware, and deep tissue working to heal) by sitting on an ice pack. The ice pack your now-defunct pain specialist told you not to use (although your surgeon recommended it), along with discontinuing those muscle relaxers your surgeon prescribed.

Imagine all this, if you can…

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Take a walk in my shoes

See also: On Opioids: OneYear After DEA Reforms and On Opioids: America’s Drug Addiction and the Wacky Laws that Perpetuate Them


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Take Action Now!

Garnering Support for Pain Patients, Media Sample Letter

Garnering Support for Pain Patients, Political Sample Letter and Petition


Learn More:

Opioid Epidemic, Drug-Mix Overdose Death

Pain Care Shouldn’t Be Political Theater

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The Starfish Project: An Introduction

Visit the post for more.

Source: The Starfish Project: An Introduction

Wholeness and Spiritual Healing

12 years ago, my husband and I lost an infant daughter. A few years passed, and a well-meaning family member (who was not around at the time of our baby’s death) suggested to my husband and I, that God could bring spiritual and emotional wholeness/healing into our lives again if we would let Him.

My husband and I smiled politely and internally dismissed this family member’s view, because they didn’t really “know”. They didn’t see how deep the wound went; how life-altering the wound was. Yes, God can heal and does heal, and He gave us 3 more beautiful, healthy children and a variety of lovely “fur-babies” as well. Each baby has brought joy and hope and love into our lives, and our wounds have healed. Still, there are deep scars that cause pain from time to time. These scars are reminders of our love for our baby. They will never heal completely as if she didn’t exist, nor would we want them to. Our hearts were broken that day, we were changed forever, but it was after all, a good change, not a “good wound”.

The same can be said of others’ deep wounds. There will be scarring of the heart and mind; they will never be the same person again. Just as healing from a surgery takes time, or certain physical wounds may never fully heal, these realities do not negate God’s love, compassion, or healing abilities. We are healed, but we are scarred. That is how God built people inside and out.

The Ideology of Underage Marriages in Conservative Christianity

A Teen by Definition is Not “Mature”

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Not a real bride and groom.

*Little disclaimer: By “mature” I mean as physically developed and/or experienced in life as adults. I am not referring to responsibility, which many teens are better at than some adults. 

I was just 16 but I knew it was love, and my boyfriend, also 16, and I secretly but seriously discussed our future. It was my 18th birthday when my new boyfriend and Sr. year highschool sweetheart proposed to me at our favorite park. I was 18 still when we married and my 19th birthday came one week later. My husband was barely 20.

Over the past 13 years of marriage, we have occasionally reflected on the past. On this issue, we both have come to the conclusion that marrying so young is not something we would now recommend to others. We were in love, but we were not prepared. We were not prepared financially, reproductive-wise, and he was not prepared mentally. Until my new husband kindly walked me through the steps, I had never paid a bill before. I didn’t know how to cook beyond pasta salad and boxed mac and cheese. We had no long-term plans, no goals other than my determination to get my Bachelor’s (it took 7 years, but I finally did).

We were strongly encouraged to marry fast in order to avoid living or falling into sin (sex), and we happily and naively agreed for the sake of our spiritual health and physical desires. It never occurred to our superiors/supporters that if we couldn’t be mature and responsible sexually before marriage, we weren’t mature enough for marriage. Our best friends and family were devastated and deeply concerned. They thought we were being way too hasty.

We struggled much for the first few years, forced to grow up very quickly and alone, for our friends were still in college when we began having babies. Not knowing how to budget, how to pay bills, or how to plan for long-term savings, and neither of us having a college degree, we suffered financially. Some decisions we made so long ago still haunt us today. We were encouraged not to take birth control since they were “full of toxins” and “not natural”, but to try the spit and microscope method of birth control instead. Wouldn’t you know it? Within 7 months I was pregnant.


Underage Marriage in the United States?

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Two girls playing house.

I was skeptical when a spiritual abuse blog I follow, posted an article on their FB page about child marriages in certain fundamental, homeschool, patriarchal, Christian circles. I knew it happened in many developing countries. I knew about the practice in fundamental Mormon (FLDS) churches out West. I knew it was a growing issue in the US due to the influx of immigrant cultures, but surely this article was grossly exaggerating the occurrence of underage marriages in these Protestant Christian groups. The article only highlighted two instances of child marriage, and both happened in the same family with a mother (married at 15) and her daughter (married at 16).

I asked for more information, and the moderator of the Spiritual Sounding Board Facebook page generously provided me with 3 more articles. While none of them could make a convincing case for the actual practice of child marriages, the positive mindset among several general commenters, the remarks of Kevin Swanson and Dave Bruehner-two big names in the conservative Christian homeschooling movement, and even Phil Robertson of “Duck Dynasty”-fame, began to show a disturbing trend.

There is a legal, and for some, ethical, difference between underage child marriages which occur between 12-17 (more typically, 15-17) years of age, and young or early marriage, which happens between 18-22 years of age, generally speaking. While the latter has been increasingly pushed by some in Evangelical circles to prevent or reduce sin, when the former does occur or is promoted, many times it is for very similar reasons.


Early/Young Marriage, 18-22

Today there is “a sort of attitude … magical thinking, that if we get you married, then you’ll be fine and we don’t have to worry about anti-poverty programs… we don’t have to worry about child care.” Scholars, pundits and other policy elites need to end their magical thinking about marriage and acknowledge the widespread nature of marital poverty and economic hardship. Married Without Means, p. 3

Statistics have told those with “ears to hear” for years that the rate of divorce decreases, the older a couple is when married. Couples between the ages of 18-24 (or younger) have the highest rates of divorce among married couples. This age group of married couples also tend to suffer significantly lower incomes, many times at or even below poverty level. Poverty’s fallout among young people and society includes poor education, single parenting (related both to the high divorce rate and young, unmarried mothers), severe stress, poor mental and physical health, drug abuse, child abuse, abortion, and the ignominious welfare state-all issues that conservative Christians are deeply worried about.

Still, there are many examples of conservative celebrity Christians, politicians, and leaders who strongly promote the idea of early marriage as a panacea for society’s ills. The often-cited op-ed article from Christianity Today called, The Case for Early Marriage (July 2009), by Mark Regnerus, a sociologist with much to say on the topic of young marriages in the church-see also Regnerus’s similar article titled, Freedom to Marry Young (April 2009), from the Washington Post-seems to be mostly concerned with abstinence (rather a lack thereof), baby-making, the “decreasing market value of women” as they age, and economics; it is cheaper to live together with someone, pooling resources, than living alone, he insists. Continuing in the CT article, Regnerus appears to idolize marriage as a “formative institution” and elevates it to the status of duty, meanwhile stigmatizing singles (especially women) as if they are forced to settle into their singleness. Regnerus is a real romantic.

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Anna and Josh Duggar

The Duggar Family’s long-running reality TV show has garnered them much influence. The Duggars, of “19 Kids and Counting” fame, do not self-identify as a Quiverfull family, but they do maintain similar strict beliefs concerning children, homeschooling, marriage, modesty, patriarchy, and courtship. “Jim Bob and Michelle were married on July 21, 1984, just after Michelle’s high school graduation. She was 17 and he was 19 when they married; neither went to college” 19_Kids_and_Counting.

It would seem that oldest son Josh Duggar and his wife, Anna, were married when they were both 20. Anna says on their webpage, she first saw Josh via the TV show when they were both 13. They met at a homeschooling conference in 2006, when they would have both been 18. After a carefully cultivated courtship, they were married in 2008 and now have 4 children.

Josh was recently found to have cheated on his wife with a prostitute (at least once), engaging in rough, unprotected sex and potentially exposing both his wife and unborn child to venereal disease. Of Josh’s two married sisters, one was married at 20, the other waited until the ripe old age of 24. Both young women became pregnant immediately, none of the Duggars have gone to or have been encouraged to attend college. Although the Duggars’ lifestyle has worked for them financially because of their celebrity status, the average couple who marries early becomes just another statistic.


Child Marriage: A Rose by Any Other Name

Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy. Proverbs 31:8-10
Rather than at least remaining neutral on the subject or better yet, speaking up for voiceless girls and young women like the Bible adjures Christians to do, certain teachers, preachers, and celebrities like Swanson, Bruehner, Robertson, the Duggar family, and others, actively encourage early marriage, even child marriage, although most Evangelicals draw the line at age 18-20 (*Disclaimer: I do not know that the Duggars advocate for child marriage, but the others in this list have, as has already been discussed in this article).

“At a Sportsmen’s Ministry talk in 2009, [Phil] Robertson had some advice for a young man. “Make sure that she can cook a meal, you need to eat some meals that she cooks, check that out,” he said. “Make sure she carries her Bible. That’ll save you a lot of trouble down the road. And if she picks your ducks, now, that’s a woman.”

“They got to where they’re getting hard to find,” Robertson remarked. “Mainly because these boys are waiting until they get to be about 20 years old before they marry ’em. Look, you wait until they get to be 20 years old, the only picking that’s going to take place is your pocket.” The Duck Commander company founder added: “You got to marry these girls when they are about 15 or 16, they’ll pick your ducks. You need to check with mom and dad about that of course.” “

And Robertson practices what he preaches. He began dating his wife, Kay, when she was only 14 and he was 18. They waited until Kay was 16 to get married. Duck Dynasty Star: Girls Should Carry a Bible Cook and Marry When They are 15-RawStory

In a radio broadcast defending Phil Robertson’s comments above, former Executive Director of Christian Home Educators of Colorado, and current head of Generations with Vision, Kevin Swanson stated: “Remember that one concern people had over Duck Dynasty, when the guy came out and said the girls, 15 or 16 years of age, she’s able to get married, they got all mad. Because boy, you get a girl married at 15 or 16 years of age, that’s a sin! Dave Bruehner: Well it is because she doesn’t have a whole life of fornication ahead of her anymore.
Later on, the men remarked, “I mean, think about what the president of the Girl Scouts would say about this, Dave, if we said, “Hey, these 15 year old girls, 16 year old girls, they may be ready to get married. They don’t have to live these, you know, independent lifestyles.””
The story of Matthew Chapman is famous/infamous depending on your perspective. He is well-known in conservative homeschooling groups for courting a young teen named Maranatha while she was 13 and he 25, eventually marrying her with her father’s permission and approval when she was 15 and Matthew was 27.
It seems that Matthew Chapman is going to be a keynote speaker at Christian Home Educators of Ohio’s annual homeschool convention this summer. This is a major convention…In addition to Matthew serving as keynote speaker, his wife Maranatha is slated as a featured speaker. Matthew runs Kindling Publications, and both Maranatha and Lauren is featured heavily on organization’s website. Matthew Chapman and Why I Included Lauren’s Picture-Love, Joy, Feminism

Attorneys claim Phillips, a close friend to the Duggar family and an associate of actor Kirk Cameron, “methodically groomed” Lourdes Torres since she was 15 years old and led her to believe they would be married. Phillips told the girl this was possible because his wife, Beall Phillips, “was going to die soon.” Lawsuit Reveals Teen was Groomed as Personal Sex Slave in the Duggar Family’s Movement-RawStory

Child marriages heralded by the above-mentioned men, seem genuinely logical in their anachronistic culture which sometimes encompasses such names as Quiverfull, Patriarchy, and Evangelical Homeschool Movement (*there is much overlap here; not all families that adhere to these labels believe all the same things, perhaps especially on the issue of underage marriages). These movements, along with some Fundamental Evangelical Christians and churches, strive to bring back a romanticized 1950s, in some cases 1850s, believing those times to be Christianity’s heyday in America. Interestingly, or perhaps not surprisingly, those eras in history saw higher rates of underage marriages and sexual abuse, wife submission, and patriarchy-centered households -all hallmarks of the above-mentioned movements. It wasn’t until women’s groups moved strongly to shed light on the issues and promote change, that child marriage began to become a thing of the past.
shovelfaceWhile many might consider child marriages to be a form of pedophilia, medically and legally speaking, pedophilia is limited to sexual attraction to prepubescent children and child molestation is limited to the sexual touching of children 14 and younger. Sexual abuse, then is the term to be used concerning the topic of child marriages.
UNICEF has stated that child marriage “represents perhaps the most prevalent form of sexual abuse and exploitation of girls”.[5] The effects of child sexual abuse can include depression,[6] post-traumatic stress disorder,[7] anxiety,[8] complex post-traumatic stress disorder,[9] propensity to further victimization in adulthood,[10] and physical injury to the child, among other problems.[11]  End Child Marriage PDF-UNICEF, p. 8
The main debate points against pedophilia concern:
  • The lack of true consent on the part of the child
  • The manipulation and power plays on the part of adult authority figures/taking advantage of a child’s innocence, naivete, and inability to say “no”
  • The safety and health of a child which includes the possibility of pregnancy, STDs, and/or physical damage
  • Using a child for the gratification of an adult
While the legal definitions exclude underage, child marriages from being classified as pedophilia or child molestation, there are still strong similarities because of the unique, fundamental culture of the groups that propose it:
  • The young girls in such families are not able to give their own consent, because the consent is settled between the father-patriarch and the bridegroom.
  • There are significant power plays on the part of older adults as they take advantage of such a sheltered girl’s innocence, naivete, and inability to say “no”.
  • The safety and health of the young lady is not taken into consideration, since medicine has shown how dangerous pregnancy can be for teens and their babies, yet in many of these families, contraception is considered a terrible sin against God. As was seen in the Josh Duggar-Ashely Madison case (see link above), these innocent teen girls may still be at risk of STDs as well.
  • Finally, these young marriages are pushed or arranged purely for the gratification of the adults involved and not the benefit of the girl.

Conclusion

  • Young/Early marriages occur between at least one party who is between 18-24 years old. In most cases, the couple are peers in age.
  • Young/Early marriages are often encouraged among traditionally-minded churches and religious groups as a way to reduce sexual sin and single parenthood.
  • Young/Early marriages and child marriages have the highest rates of divorce among married couples. Many times, young couples are uneducated, leading to poverty, which in turn leads to a variety of personal, familial, and social problems.
  • Child marriages are marriages that occur between at least one party who is between 12-17 years old. In many cases, the minor is a female and the bridegroom is in his mid-20s or older.
  • Child marriages are happening in the United States due to the culture of immigrants coming in and religious fundamental cults throughout the states.
  • Child marriages are a form of sexual abuse, no matter how prettily packaged it may seem.IMG_5559_Etsy_watermark

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References and Research:

Orthodox Pedophile: I Married My Child Victim So There was No Sexual Abuse

Early Marriage Survives in the US-Chicago Tribune

DayoftheGirl.org

Child Marriage in the United States and its Association with Mental Health in Women-Pediatrics Journal

Child Marriage and Christian Fundamentalists-Republic of Gilead Blog

On Child Marriage: Kevin Swanson and Dave Bruehner Defend Phil Robertson-Homeschoolers Anonymous

Red Sex, Blue Sex-The New Yorker

Wait for Sex and Marriage? Evangelicals Convicted

Unsatisfied With Pushing Abstinence Alone, Evangelicals Begin Pushing Early Marriages As Well-Jezebel

Teenage Brides and Titus 2 Women of the Homeschool Apostates-Becoming Worldly

Robert Van Handel: A Disturbing Look into the Mind of a Pedophile Priest