Thursday, December 24, 2015

Christmas Thank You to Nurses

Beth had to get an infusion of her Orencia on Christmas Eve, and they gave her a rainbow bear! All of the staff at Akron Children's Hospital have been phenomenal in their care and love of my children over the years. I want to say thank you to every nurse out there. So many times I've been moved to tears by your love and tenderness toward my children. Merry Christmas, and thank you for your steadfast, tireless service to children and families.

Wednesday, December 23, 2015

Christmas letter 2015

Dear Family and Friends,

Merry Christmas! We pray the year’s end finds you filled with hope and peace. While mental illness loomed large here this year, we’re closing 2015 with hard-fought hope.

Peter, turning 14 in a few weeks, suffered a concussion in August, 2014, having fallen out of a tree. The worst of the mental effects lasted 10 months. Finally, in June of this year, Peter started reading with the concentration and speed he previously enjoyed. The concussion also worsened his Obsessive Compulsive Disorder, or perhaps puberty did, which is common. Either way, his OCD is now in the moderate-to-severe range.

OCD is an inherited condition, like all anxiety disorders, but the genetic component only predisposes a person to experience anxiety of various kinds. How we respond to the anxiety (in this case, obsessions) is the main problem; the wrong responses create pathways in the brain that make the condition harder to treat. Forgive me for the textbook definition below in italics, from the International OCD Foundation, but as a parent of three sufferers, I understand the need for awareness in the general culture.

What is obsessive compulsive disorder (OCD)? OCD is an anxiety disorder that consists of obsessions and compulsions. Obsessions are unwanted ideas, thoughts, images or urges that are unpleasant and may cause worry, guilt or shame. Compulsions, also called rituals, are behaviors the child feels he or she must perform repeatedly to reduce the upsetting feelings or prevent something bad from happening. To be diagnosed as OCD, these behaviors must be time-consuming and interfere with the child’s daily life.

What kinds of obsessions do children and teenagers have? Children may have worries about germs, getting sick, dying, bad things happening, or doing something wrong. Feelings that things have to be “just right” are common in children. Some children have very disturbing thoughts or images of hurting others, or improper thoughts or images of sex.

What compulsions or rituals do children and teenagers have? There are many different rituals such as washing and cleaning, repeating actions until they are just right, starting things over again, doing things evenly, erasing, rewriting, asking the same question over and over again, confessing or apologizing, saying lucky words or numbers, checking, touching, tapping, counting, praying, ordering, arranging and hoarding.

How common is OCD among children and teenagers? About half a million children in the United States suffer from OCD. This means that about one in 200 children, or four to five children in an average-sized elementary school, and about 20 teenagers in a large high school may have OCD.

My research also revealed that OCD sufferers are of average or above-average intelligence, and tend to be very conscientious people. Although some have shocking thoughts as described above, they are the least likely to ever act on such thoughts. OCD is not a mental illness that leads to violent, criminal, or deviant behavior. OCD-impaired brains produce what most shocks the sufferer, and their conscientious natures respond with panic.

I’ve learned that all of us have shocking content occasionally produced by our brains, but we have a mental filter that works, so nonsense thoughts discard immediately--so rapidly we barely notice them. In those with OCD, the mental filter works improperly, and the weird thoughts produce horror, shame, and fear, all of which the sufferer feels desperate to neutralize.

Responding with rituals reinforces the obsessions (fears) in the brain, causing the thoughts to occur more frequently and expand in scope, and at the root of it is a preoccupation with certainty. Thus, the OCD driver who circles the block for two hours, looking for the person he hit with the car. Yes, it gets that bad… or the child stuck in the bathroom at school washing for 30 minutes…or the sufferer who cleans the house for hours at night and makes everyone change their clothes upon entering…or the sufferer who can’t leave the house because an OCD loop is making them check the locks and windows and stove countless times. No matter that the sufferer knows the fear or scenario is irrational; it doesn’t matter, because the need for absolute certainty drives the rituals.

The disorder starts as early as 6 or 7 years old, although in many people it won’t manifest until a stressful event or transition triggers it in adulthood (even the hormones of pregnancy can trigger it).
There is hope. OCD is a treatable condition, with about 70% to 80% responding to the proper therapy, although the therapy isn’t a cure. This is a condition, like diabetes, which requires regular management. Some need SSRI medication for life to avoid relapses, but medications work best in conjunction with therapy. Some people, especially those without access to proper therapy, become impaired enough to be housebound, and some stop eating because of obsessions relating to food contamination.

We’ve tried two therapists, both an hour away, but neither were a good match. No one in our area knows the proper treatment protocol, so we will be paying out of pocket starting in February for an experienced therapist who specializes in Peter's type of OCD. This retired therapist works out of PA, having formerly worked with university patients for decades. Peter will be receiving Skype coaching from him for $45 a session, which is far cheaper than the $100 to $200 a session that experienced therapists normally charge.

Our faith carries us through. Peter loves the Lord and while he’s struggling mightily and gets depressed over the condition, he isn’t bitter; he doesn’t blame God. Those suffering from mental illness are among the bravest in our world, but sadly, their courage mostly goes unrecognized.

A Christian for 18 years, I’ve come to understand that whatever path the faithful must walk, it is God ordained. A higher purpose exists for everything we suffer, and as long as we focus on God’s purposes and promises, we can finish the race well--without bitterness and with soul joy that eclipses pain. God promises to those who love him not a comfortable life, not fame or fortune, nor respect or recognition. He promises his presence, his everlasting love, and grace that abounds. We have all of we’re rich!

In other family news, Beth just turned 7, Mary just turned 9, Paul just turned 12, and Peter, as mentioned, turns 14 in a few weeks. Beth’s juvenile rheumatoid arthritis, diagnosed at age 2.5, wasn’t responding well enough to the low-dose cancer drug, methotrexate. In March, 2015, she started a second drug, Orencia, via monthly hospital infusions. Orencia is a rheumatoid arthritis drug that works on the autoimmune response & inflammation. Her methotrexate also works on the autoimmune response, and her third drug, twice-daily naproxen, works on reducing inflammation. She’s doing well now, running like any other child, though she tires easily during exercise. The question looms as to whether she will be among the 50% who grow out of childhood arthritis. There is a window for remission before puberty, and then again in her teen years. She has an aggressive case, which does not mean she’s less likely to grow out of it. Her involved joints are both knees, the left ankle, and a wrist. Her eyes have been clear of inflammation for 2 years now.

She amazes me, my beautiful Beth--full of grace like her name (her real name is not used here on the blog). What a rain of sunshine in our lives! Art is her passion, as is acting and dancing and stories. She has a mild case of dyslexia, which contributes to her artistic, imaginative bent, but thankfully her reading is up to speed this December, and numbers and letters are slowly finding their proper way with pencil and paper. She loves school and stuffed animals and dolls, putting together tea parties and school rooms for her stuffies.

Mary, always a gentle soul, remains stubborn but less so now at age 9. She delights me, this tomboy in tune with nature and at home with frogs, toads, salamanders, katydids, grasshoppers, and praying mantises. She delights in her sister and brothers. Thanks to homeschooling, there’s genuine appreciation and love evident in their strong bonds. Of all the blessings inherent in homeschooling, strong family bonds trump them all.

While Mary’s dyslexia is somewhat worse than Beth’s, she’s cracked the reading code and beginning to soar in her personal reading time. Dyslexia, occurring in approximately 1 in 5 people, is something else I’ve had to research extensively. Thankfully, it’s as much a blessing as it is a reason for impairment—bringing intellectual gifts and talents shared by actors, entrepreneurs, artists, and architects, as well as scientists and doctors who see possibilities missed by others.

Paul is doing well--his OCD, along with Mary’s, is only mild at this point. Growing in his faith, he loves church and youth group, art, writing stories and plays, math, basketball, computer programming, and teaching.

Peter still loves observing nature, and enjoys reading, basketball, and gardening, though his OCD has muted his hobbies and passions. It’s stolen things from him and that’s hard to think about as I write this. He still wants to do missionary work and still has a passion for sharing his faith, but we hear far less of that and more from the OCD.

I purposely make sure the kids avoid the video game and hand-held technology monster that’s taken over the nation’s youth. Our rule in parenting is: only say no when you can’t say yes. Much of that focuses on what is best for kids, verses what they think they need. We want them to distinguish wants from needs, because the loss of that perspective is what keeps people from making an eternal impact on the world.

Thankfully, the youth group coordinators work hard to get these kids playing cooperative games and exercising, and enjoying and appreciating each other on other levels, as they deepen their mutual faith and trust in the Lord. Service-oriented projects, like helping out in soup kitchens, are also planned monthly. My boys enjoy all of the activities.

We’re in a different church this year, having found one that offers its own AWANA program, its own Vacation Bible School, as well as a youth group for both middle and senior high. I’m teaching middle school AWANA, and no one is more surprised than me that…wait for it…I love these kids! I abhorred subbing for the middle school when I was working on my teaching credential. After several tries, no degree of poverty could convince me to return to the middle school campus.

Since Beth began first grade work this fall, I’ve found little time to write. It’s a passion on hold, though I do keep a gratitude journal. The boys start ninth grade next fall (at home) and the good news is that I’ve stopped hyper-ventilating about homeschooling through grade 12. It was always the plan, but when we began to plan their four years of college-prep courses, anxiety set in. Hours and hours of research preceded my present calm. It’s coming together and the boys and me are really looking forward to it. I love their company and learning along with them, and what I can’t handle the local junior colleges can handle through dual enrollment. DVD courses and Skype courses are also a reality for homeschoolers in the maths and sciences, though Paul is the family math tutor. If I can’t handle the fetal pig or frog dissections, I’ll hand it over to hubby for his weekend fun. Wink.

Really, hubby's a good teacher and enjoys rounding out the curriculum for us.

My husband is still working as a custodian in a church and an industrial building, and still working hard to care for his dad, who is nearly 93 years old and resides in Florida by himself. His father suffers from mental illness, including severe OCD, and is very difficult to deal with, both by phone and in person. We’re really at a loss as we seek to ensure his dignity and overall well-being, and follow his personal wishes. More than occasionally he acts irrationally and stops answering the phone (which happened this week). Usually the long phone conversations occur every couple days, but regardless, we keep in contact with his neighbors, who buy his groceries and watch out for him as he checks his mail and puts out his trash.

Happy New Year to you and yours! We pray your 2016 is full of love, peace and joy, with the Lord ever present in your lives. Thank you for your friendship and love!

Monday, December 14, 2015

Blogging as Therapy

There's never time enough, it seems, for a mother to take care of her own needs. Blogging (journaling) is a form of therapy for me, but it crossed my mind over the years that maybe if I blogged less, the house would be cleaner and I would be more organized and stay organized. Not to mention, get more sleep, since most of my blogging is a late-night event. I wondered...if the house was cleaner and I was more organized, and well-rested, would there be less stress around here?

Well, no.

The last ten days--ten days of no blogging--have been extremely stressful, though not without blessings. My son Peter's moderate-to-severe Obsessive Compulsive Disorder has us in survival mode. A cluttered house is so. not. the. problem.

Ten days is the longest I've gone without blogging since my first blog post on December 16, 2007. I started on another blog with our real names, and switched to this anonymous blog after two years.

Why is blogging so therapeutic?

The answer for me is that as I write, my jumbled thoughts line up in a neat row and clarity comes to me. The Holy Spirit's teachings then penetrate my heart better.

Some of you know that I cut off contact with my functioning alcoholic mother nearly two years ago, and after that I learned about the set of characteristics common to ACOA (Adult Child of an Alcoholic). Any adult who grew up with a toxic parent would share at least some of these characteristics (listed below), whether alcohol or drugs were involved or not.

Adult Children:

...guess at what normal is.

...have difficulty in following a project through from beginning to end.

...lie when it would be just as easy to tell the truth.
(I think this particular characteristic is more seen in severe alcoholism with abuse present as well. A couple neighbor children here display this compulsive lying. It's surmised that these children can't handle the truth of their situations, so they make things up to create a better story. If this persists over time, they lose the ability to easily discern what is lie and what is reality, and they have a harder time managing lies because they've told so many.)

...judge themselves without mercy.

...have difficulty having fun.

...take themselves very seriously.

...have difficulty with intimate relationships.

...overreact to changes over which they have no control.

...constantly seek approval and affirmation.

...feel that they are different from other people.

...are either super responsible or super irresponsible.

...are extremely loyal, even in the face of evidence that loyalty is undeserved.

...tend to lock themselves into a course of action without giving serious consideration to alternative behaviors or possible consequences. This impulsivity leads to confusion, self loathing, and loss of control of their environment. As a result, they spend tremendous amounts of time cleaning up the mess.

I regularly feel the pain of several or more of these characteristics. And unfortunately, the more I realize how crippled I am by these, the more I hate my mother's choices and how they affected me and my brother and sister. Forgiveness is so not a one-time event. The only way I can keep praying for and forgiving my mother and step-father is to imagine them as babies and toddlers, unaffected by dysfunction and unable to inflict pain. Their combined choices were very, very costly for me and my siblings.

While I didn't become or marry an addict, as some adult children do, I did marry someone who I felt needed rescuing (classic codependency). I do love my husband and am committed to a life-long marriage, but that doesn't mean I got into this for the right reasons. We are low-income because of my dysfunctional choice. My children suffer because of my dysfunctional choice. I suffer because of it. God in his graciousness, however, had me stay single until I both became, and met, a Christian. That my husband is a Christian is an act of incredible grace toward me and my children. 

An elderly, mostly house-bound neighbor came over to use the phone last week. He said he watches my children play in the front yard and he can't believe how happy they seem. It's true, not just a kind comment. They are happy. Not all the time, due in large part to inherited anxiety disorders, but they know how to have fun. They are not growing up in a dysfunctional home, which is tremendous progress for my family line.

Our friend Dean, over for dinner to do more drywall for us, stayed for family prayer and said in his prayers that our house is full of love. Having bipolar himself, he knows something of the angst inherent in mental disorders. He knows our struggles, but he still thinks this house is full of love.

That comment, too, reminded me of the enormity of God's grace in my life. A house full of love? What could be better?

What's missing is an acceptance of self. Call it self-love, if you will. I'm a grateful person, not inclined to focus on the negative, except when it comes to me, personally. I give myself so little grace.

As a Christian, it's necessary to realize that God doesn't erase consequences of sin. He showers us with grace, but the final fix comes in heaven. That doesn't mean that our dysfunctional starts have to define us, however. When it comes to healing our personal wounds, it doesn't matter so much why we're in pain, really. It usually isn't helpful to lie on some couch and talk about the past. Cognitive behavioral therapy is all about changing thinking and behavior. 

Therapy is helpful in identifying the cognitive distortions involved in personal pain. Going forward, when I feel pain and turmoil, I'll look at this list and try to identify what distortion matches my current thinking, and try to emerge from its oppression.

Here are the most common distortions therapists see in their practices, and if you've ever experienced anxiety or depression, you probably have some of these distortions going on, though depression can be strongly chemically based as well.

I hope something on this list helps you. My son Peter and I have both found them helpful. They aren't anything like the Holy Spirit's influence, but I think psychology can certainly complement Christian teaching. It just can't replace it or overshadow it.

The Lord saved me, and he introduced me to true love. I am rich with love. Now, if only I could show kindness to myself.

All-or-nothing thinking: You see things in black and white categories. If your performance falls short of perfect, you see yourself as a total failure.

Overgeneralization: You see a single negative event as a never-ending pattern of defeat.

Mental filter: You pick out a single negative detail and dwell on it exclusively so that your vision of all reality becomes darkened, like the drop of ink that discolors the entire beaker of water.

Disqualifying the positive: You reject positive experiences by insisting they "don't count" for some reason or other. You maintain a negative belief that is contradicted by your everyday experiences.

Jumping to conclusions: You make a negative interpretation even though there are no definite facts that convincingly support your conclusion.

Mind reading: You arbitrarily conclude that someone is reacting negatively to you and don't bother to check it out.

The Fortune Teller Error: You anticipate that things will turn out badly and feel convinced that your prediction is an already-established fact.

Magnification (catastrophizing) or minimization: You exaggerate the importance of things (such as your goof-up or someone else's achievement), or you inappropriately shrink things until they appear tiny (your own desirable qualities or the other fellow's imperfections). This is also called the "binocular trick."

Emotional reasoning: You assume that your negative emotions necessarily reflect the way things really are: "I feel it, therefore it must be true."

Should statements: You try to motivate yourself with shoulds and shouldn'ts, as if you had to be whipped and punished before you could be expected to do anything. "Musts" and "oughts" are also offenders. The emotional consequence is guilt. When you direct should statements toward others, you feel anger, frustration, and resentment.

Labeling and mislabeling: This is an extreme form of overgeneralization. Instead of describing your error, you attach a negative label to yourself: "I'm a loser." When someone else's behavior rubs you the wrong way, you attach a negative label to him, "He's a louse." Mislabeling involves describing an event with language that is highly colored and emotionally loaded.

Personalization: You see yourself as the cause of some negative external event for which, in fact, you were not primarily responsible.

Thursday, December 3, 2015

Giving Thanks and Balm for the Weary

Giving Thanks for His indescribable gifts...

~ That he promises to finish the work he started in us. How amazing is that? And how comforting?

~ Hot cocoa with my kids on slow-start days. Just being together is a gift.

~ Stories in the easy chair.

~ Christmas stories from the library as a Christmas month tradition. Not all Christmas traditions cost money!

~ Living in the freedom of homeschooling and deciding myself what is best for my kids.

~ Daytime hugs whenever we need them.

~ Trek AWANA kids at church. I love our small group of 8 lovely young people.

~ Homemade whole wheat bread with honey.

~ Advent verses and reading-through-the-Bible plans keeping us busy.

~ Watching children learn the discipline of prayer.

~ Learning that I don't have to get it all done each day. The Lord is gracious and his yoke and burden, light.

Matthew 11:29-30 "Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and YOU WILL FIND REST FOR YOUR SOULS."For My yoke is easy and My burden is light."

More verses for the weary.

John 16:33 I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

Philippians 4:6 Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

Jeremiah 29:11 For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.

Matthew 11:29 (different version) Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.

Isaiah 40:28 Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable.

Proverbs 3:6 In all your ways acknowledge him, and he will make straight your paths.

Matthew 28:18 And Jesus came and said to them, “All authority in heaven and on earth has been given to me.

1 Peter 1:13 Therefore, preparing your minds for action, and being sober-minded, set your hope fully on the grace that will be brought to you at the revelation of Jesus Christ.

Wednesday, December 2, 2015

Giving Thanks - 12/2

Colossians 3:23 And whatever you do in word or deed, do all in the name of the Lord Jesus, giving thanks to God and the Father by him.
I'm thankful for...

 the Lord, who promises his presence, his love, his grace for always.

~ the freedom to express my love for God freely.

~ the freedom to say the word Jesus and to love Jesus.

~ an upcoming vein surgery to relieve varicose vein pain.

~ good, loving relationships at home.

~ loving children.

~ God's love, provision, mercy, grace, faithfulness, forgiveness, strength.

~ God's Word.

~ a nicer, thrifted Christmas tree.

~ nicer, thrifted ornaments.

~ homeschooling.

~ beautiful, exciting reading progress.

~ a wonderful letter from our Compassion teen Sheila who lives in Uganda.

~ a friend doing some drywall work for us.

~ scientists spending years of research on OCD and juvenile rheumatoid arthritis, which helps my children live higher quality lives. Though sometimes very stressful, our situations are vastly improved over past generations.

~ his mercies that are new every morning.

~ hope.

Lamentations 3:23 They are new every morning: great is your faithfulness.

What are you thankful for this week?