On Having a Dad who Died at 47

I have seven specialists.  One General Practicioner.  I'm on a variety of medications.  I have been diagnosed with Meniere's Disease, Hyperthyroidism, Goiter, Hypothyroidism, IBS-D, Chronic Depression, Generalized Anxiety Disorder, Insomnia, Herniated disc, pre-cancerous polyps, Concussion, Post-Concussion Syndrome, Arnold Chiari Malformation, Type 1, and Migraine with Brainstem Aura.

I'm 40 years old. 

My dad died when he was 47.  He was diagnosed with about half of the things I've been diagnosed with, and probably had many of the others that he was not diagnosed with.  The last thing he was diagnosed with was stage 4 Adenoma Carcinoma (cancer), Primary Site unknown.

By the time he was officially diagnosed, it was too late.  He had been seeing doctors for a variety of ailments, but they never seemed to know what was wrong with him.  He became disillusioned, and stopped putting any faith in doctors.  The night mom called me to tell me dad was not well and needed to see a doctor, I had to have a long talk with him.  I urged him to go the Emergency Room.  "They never know what's wrong with me," he said, but went anyway.  I understand where he was coming from now.

Losing a father at such a young age (an age I am quickly approaching) changes how you view life.  My dad's father had died at the age of 57.  Dad was always concerned about not living past 57.  I have a concern about living past 47.  I can't explain it.  It's just there.

Living with chronic, and often unexplained illness takes a toll.  You feel the symptoms, but they can't be explained.  You go to doctors, but they explain things away, and simply have you try different things that may help temporarily, but then do not help with the other myriad of symptoms you also have.  And specialists rarely try to put all of your symptoms together.  "That's not in my field."

Dad, once he was diagnosed, was told he could go back to work until treatment started.  He never went back to work.  Mom called us and let us know Dad was failing fast.  When I saw him, I was devastated by how bad he looked.  We took him into the ER that night.  He told us that we must simply take each moment as it was given us.

I returned to the ER that night when the morphine drove my dad into hallucinations and he tried to escape the hospital.  I had to convince him that he needed the oxygen he was trying to avoid, and helped him put the tube back in. 

I now live with chronic illness, as my dad did.  Am I more sensitive to findings on reports, symptoms as they occur, and doctors who don't seem to listen?  Yes. 

But let me make something clear...I don't fear death.  I do want to make sure that the time I am given on this earth is spent with me in the best possible health I can have because I want to be available to my family, my friends, my church, the unexpected strangers.  But I do not fear death. 

None of us are guaranteed another day on this world.  We are simply given the opportunity to make the most of each day.

Living with chronic illness can make this tough.  I'm a performance based, task oriented person by nature.  I often forget my value as a daughter of God, and place my value in what I am able to do.  On good days, when I don't have to stay in bed for hours, or take extra medication because of my migraines, I feel better about myself.  I struggle with the days where I am bed bound, struggling to fight the urge to seek the guillotine because the pain in my neck and head are so bad due to my migraines and Chiari.

But I know the pain of losing a parent at a young age.  I don't wish that for my children.  That's why I continue to fight, to seek answers, to look for solutions, even when I'm told there are none. 

"God grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference."

An Idle Mind is the Devil's Workshop

I believe that the saying of my subject started as "Idle hands are tools in the devil's workshop" or something of that nature, but my own weakness tends to stray for more into the mind, rather than the hands, especially these days.

Time.

I have much of it to sit and think, or try to think through the onslaught of symptoms my brain is trying to hurdle.  I did hurdling in high school.  I'm as good at hurdling my symptoms and thoughts as I was at hurdling in high school, which is to say that I'm terrible.

I am an over-thinker.  I'd gotten better in my adult years, but this current health situation I find myself in has me once again stewing (hence my blog site's name) over situations, symptoms, and possible diagnoses constantly.

I went back to the neurologist that diagnosed me on Thursday.  It was one of the worst medical experiences I've ever had, at least from an emotional and mental standpoint.  He, who was so quick to diagnose me the first time (and in fact had spent an hour and a half convincing my husband and myself that this was indeed the diagnosis during our first visit), changed his mind within 30 seconds of seeing me during an actual episode.  He is referring me to an epilepsy unit (despite saying multiple time that he does not think I have epilepsy), and is washing his hands of me as a patient. He lectured my husband and I as to why my diagnosis was incorrect, and how it definitely didn't seem to be neurological (even though I have a skull malformation, a hole in my brain stem, and am exhibiting classic neurological symptoms).

Living with an undiagnosed skull malformation for 39 years, I've had my fair share of being handed around to various specialists trying to treat individual symptoms or syndromes.  I've been diagnosed with Meniere's disease, hypo-thyroidism, IBS-D, food intolerances, chronic depressive disorder, anxiety disorders, PTSD, herniated discs, and most recently, Arnold Chiari Malformation, Type 1 (which causes or masks all previously listed diagnoses) and Migraine with Brainstem Aura.

I'm a black and white person when it comes to facts, and desperately desire black and white answers for my myriad of medical maladies.  I thought I'd finally found it with my Chiari malformation.

But then, these unexplained episodes of neck pain, headache, paralysis, aphasia, blurred or double vision, muscle weakness, pins and needles, pressure in my ears and head, accompanied by panic attacks have once again left me in medical no woman's land.

My easily spooked neurologist (not to be confused with my diligent, patient, never-defeated neurosurgeon), thinks the symptoms or episodes are being caused by underlying stressors.

Ya think?

Stress exacerbates pretty much every disorder, disease, symptom known to man.

And we already know I have plenty of fairy large issues to be stressed about.

So this post is for all of you who find yourself written off by doctors, family members, bosses, friends, and anyone else who knows the true pain of what he or she is going through, but is dismissed by a doctor's inability to understand the nature of the illness, or the decision not to further pursue anything because it is out of their field.  I see you, I hear you, and I empathize with you.

One thing that has kept me sane, particularly in those moments when movement or speech have left me, is to pray.  Prayer is beautiful because (thankfully) it does not need to be done out loud.

My idle mind would rather focus on bitterness, anger, resentment, and, of course, worry.  And I could easily find (and am many times spoon fed) justification for why all of these are perfectly appropriate for me to be feeling (which they are).

They're just not places I can stay.

Our Father in heaven,	(breathe)
hallowed be your name.	(breathe)
Your kingdom come.	(breathe)
Your will be done, on earth as it is in heaven.	(breathe)
Give us this day our daily bread. [Or our bread for tomorrow]	(breathe)
And forgive us our debts, as we also have forgiven our debtors.	(breathe)
And do not bring us to the time of trial, [Or us into temptation] but rescue us from the evil one. [Or from evil]	(BIG BREATH)
[Other ancient authorities add, in some form, For the kingdom and the power and the glory are yours forever. Amen.]

This is the prayer than runs through my head when it could so easily become idle, and is from the book of Matthew.

I do not pretend I go to this naturally, or even consistently.  But I do know that I receive peace much more quickly when my mind goes to this prayer, or to other Scripture, or to just listening for God's voice in the midst of what are very scary circumstances to be under.


Traveler's Prayer:

May it be Your will, Lord, our God
and the God of our ancestors,
that You lead us toward peace,
guide our footsteps toward peace,
and make us reach our desired destination
for life, gladness, and peace.

May You rescue us from the hand of
every foe and ambush,
from robbers and wild beasts on the trip,
and from all manner of punishments
that assemble to come to earth.
May You send blessing in our handiwork, and grant us grace, kindness, and mercy in Your eyes and in the eyes of all who see us.
May You hear the sound of our humble request because You are God Who hears prayer requests.
Blessed are You, Lord, Who hears prayer.
Yes, and Amen.

Never Normal

Six months after my brain surgery, I experienced an episode that those around me were convinced was a stroke. I was rushed by ambulance to the hospital and admitted.  Test after test was performed.  Doctors were baffled.  My neurosurgeon felt it was simply my brain getting used to the amount of space it now had to spread nerve endings out.

After that, our house flooded during a flash flood.  We lost a car the week before to another flash flood.  It was very hard. We were blessed with so much help from our community

Our house was rebuilt during the summer.  Despite this, it was a good summer.  Lots of visits with family, I felt my health getting better, and was in a very good place.  I had one episode similar to the one in April, but it didn't last as long, and we thought we knew what was causing it. Our house was finished in August, just in time for Jeffrey to hold a birthday party here.

Less than a month later, our house flooded again during Tropical Storm Imelda.  And it was worse.  Much worse.  We lost all of our vehicles and watched our beautifully remodeled downstairs get washed away in the silt filled flood waters that came rushing down our street from the same development that had caused the flooding in May.

After that, it was more difficult to feel optimistic.  Our church experienced a pastoral change, and though my husband felt called to be a lead pastor, our board decided not to consider him, which is perfectly within their right to do.  So our house, his job, and our future was once again filled with uncertainty and chaos.

It's three months later, our house is once again almost completely finished.  We've moved back into the downstairs, have our decorations up, and lights on our house.  But no pictures, paintings, knick knacks are on our walls.  What's the point?  We put stuff on the walls in September a week before it flooded and had to take them down again.

I'm on medical leave.  After we flooded again, I started having episodes more frequently, and had two in front of students.  My school district placed me on medical leave until a neurologist could explain the episodes and provide accommodations that I would need in order to be able to keep teaching. I missed the entire holiday season of programs, games and fun that this time of year brings, and hurt from it.

We have a diagnosis now.  Migraine with Brain Stem Aura (on top of my Chiari Malformation diagnosis that will always have medical implications).  I have a hole in my brain stem.  It appeared in MRI's after surgery, and had grown when they looked at it again during my first episode.  Trauma to my brain stem appears to be what's causing them.  Migraine with Brain Stem Aura mimics a stroke (and actually increases my chance for stroke).  I lose the ability to speak and move, and get a horrible pain on the left side of my brain.  It can last anywhere from 30 minutes to hours.  I have had multiple episodes per day, and now, after receiving the diagnosis and getting medication to help prevent them, am down to one to two a week.

My main trigger for Migraine with Brain Stem Aura is stress and anxiety.

What does one do when stress is ever present?  My house WILL flood again unless the developer (Perry Homes) fixes the 300 acres of clear cut and puts in appropriate drainage.  My husband's calling to be a lead pastor is still very firm, but will not happen in our current church, which means eventually moving. Again. And who will buy a house that we know will flood?  My diagnosis is chronic.  It will always be there.  And like most chronic illnesses, treatment varies from person to person.  Will I be able to work again?  I love what I do.  How will this work?

Before finding out that he would not be considered as the lead pastor, before my diagnosis, before being placed on medical leave, my husband had been working on a series that he was going to preach on.  And oddly enough, it was from the book of Habakkuk.  The first sermon was based on chapter one:

How long, Lord, must I call for help,
    but you do not listen?
Or cry out to you, “Violence!”
    but you do not save?
3 Why do you make me look at injustice?
    Why do you tolerate wrongdoing?
Destruction and violence are before me;
    there is strife, and conflict abounds.
4 Therefore the law is paralyzed,
    and justice never prevails.
The wicked hem in the righteous,
    so that justice is perverted.

He didn't know at the time why he was being called to preach it.  But as he preached, life unfolded.  He would not be considered to be a lead pastor at the church we loved so much.  My health declined and pulled me away from my work.  Our house continued to be in danger of flooding, despite promises from politicians and Perry Homes themselves. Then he preached the next week on chapter two:

I will stand at my watch
    and station myself on the ramparts;
I will look to see what he will say to me,
    and what answer I am to give to this complaint.[a]

And the week after, we were comforted with this (although it was our Spanish speaking pastor who preached on this) from chapter three:

Lord, I have heard of your fame;
    I stand in awe of your deeds, Lord.
Repeat them in our day,
    in our time make them known;
    in wrath remember mercy.


We are given no guarantees in this life.  Guarantees of stability, of health, of wealth, of harmony are never promised.

God is our guarantee.  He will never leave us, or forsake us.  He is our mouthpiece when we are struck dumb.  He is our strength when we are weak.  He carries us when we cannot walk. He is our bulwark when everything else is ripped away.  He is who our family lives for, lives by, and is called by.

This season has been hard.  So, incredibly, hard.  But God has been faithful.  People, good, decent people, have been our help in time of need, encouragement in times of discouragement.  My family, church family, school family, community, and  especially my husband, have been my mouthpiece when I have been struck dumb, carried me when I could not walk, and been my bulwark in the midst of others forsaking him and us.  They have been the hands and feet of Christ

My pain is still real, my anxiety always ready to burst out, my body is out of my control, and my family is still sitting in impending chaos and change.  Please pray for us in this season, as so many of you have.  Please pray for wisdom, guidance, direction, and above all, peace.

And we will pray that for you as well.

Blessings on the New Year, and wishing you a very Merry Christmas.

Who Am I?

Having brain surgery to correct a problem you didn't know you had for 39 years brings several things:

1) It brings relief.  There's an answer for the wide range of issues I've had for decades.  And many of them have resolved as a result of the surgery.  I am very, very grateful to Memorial Hermann, the Woodlands, and to my neurosurgeon Dr. Herrera, who refused to give up on me.  I felt that most people in my life simply thought I was crazy.  In fact, I know some of them did.  That led to the next feeling...

2) It brings pain.  Not just the pain of the recovery, but the pain of wishing the problem had been found years ago when there were so many MRI's, CT scans, X-Rays that would have shown this, had doctors looked closer.  I don't blame the doctors who missed this.  But I do wish they had found it all the same.  And I wish people close had believed me when I tried to explain what I was experiencing for years.  It hurts that they didn't.

3) It brings confusion.  I have lost memories.  Many memories.  I still have a difficult time remembering things.  This appears to be one of the things I will not be getting back.  It's probably a mixture of the scarring my brain being in the wrong spot for so long, but also just my natural aging.

I'm also confused about who I am.  I have been sick, mentally and physically for so long.  My family became my caretakers, including my children.  Now that I'm "back", neither they or I know exactly who I am.  Who am I as a parent?  Who am I as a wife?  Who am I as a pastor's wife?  Who am I as a teacher?  Who am I?

I try to be open and honest.  I've started psychotherapy.  Turns out I've had quite a lot of trauma in my life, brain surgery being the last one.  This, put with my Chiari malformation that was unrecognized for so long, has created some anxiety that I can't quite put my finger on.

My moves as a child were traumatic.  Losing both my grandfather and father at early ages were traumatic.  I was in an emotionally abusive relationship with an extremely narcissistic man for almost two years (sorry to those of you who knew him and knew me during that time...but it's true).  Chris and I went through an extreme marital crisis shortly after my father's death that tore my world apart.  I had three children in three years, which left my body and mental state in a very fragile state shortly after that marital crisis.  Two of my children have autism, which I have grown to appreciate, but which was very difficult to come to terms with during those first years after diagnosis.  My pregnancy with Luke was filled with medical issues, all the way through to his delivery where both he and I could have died due to a placental abruption during delivery.

We moved to Texas, which was wonderful, but difficult, and have moved multiple times in Texas while being here.  Being married to a pastor, I never know how long I will be somewhere, and as a person who swore as an emotional 12 year old that I would NEVER make my children move, it's tough.  I so badly want to put down roots, but just can't.  Friend making, which has always been difficult for me, is made more difficult knowing that I may have to say goodbye to them if we are called elsewhere.  I don't like change.

I've been in educational situations that were extremely difficult, and in some cases traumatic.  And I just had an incredibly traumatic surgery that left in me in a great deal of pain for weeks.  I still panic when certain symptoms show back up suddenly and worry that I will have to redo the surgery.

I say this, knowing that there are many (including many of my students) who have suffered more than I.  But pain and trauma are different for each person, and just as important.

So I'm confused.  All this stuff is being brought up as I try to find my new place in the little world I live in in my home, my church, my school, and within my own, newly remodeled brain.

Who the heck am I?  What characteristics will stay, and what will go?  What does my poor family do as they try to navigate the "new" me?  How do I respond to them?  How do I communicate to my kids that sick mommy is gone and healthy mommy is back, and that they need to respond to me and my attempts to raise them the same as they respond to healthy, steadfast daddy?

The only thing that keeps me grounded is my faith.  I KNOW that I am a child of God.  I KNOW that I am not perfect, but that He is.  I KNOW that His plans for me are always better than those I come up with myself.

So while I am confused, anxious, forgetful, a pain, I am still HIS.  I may spend the rest of my life trying to figure out what portions of my personality are really mine, or are simply a response to the circumstances in my life. And I'm willing and doing the work to sort through my traumas, my quirks, my changes, and my anxiety.

But I need prayer.  Lots of it.  I need help.  Lots of it.

Thank you for listening to my ramblings.  And thank you for your support, prayers, and love.

2018 Christmas/New Year's Letter

(My mom used to send out a Christmas "newsletter" detailing all of us and our list of accomplishments.  I remember one year she got back a snarky article from an anonymous source basically admonishing her for making our life out to be so great and that no one wanted to hear about it.  Not sure if that's how this will come across.  If it does, Merry Christmas and a Happy New Year.  I'm going to write it in the old school way, although my details are probably a little more TMI than any old school letter would have allowed.)

December 30, 2018

Merry Christmas from the Tiner Family!  We hope this letter finds you well and at peace.  If you are not, don't worry, we're living it some difficult times, but luckily have a wonderful God we can always go to in order to find strength to meet those difficult times.

This year has been a doozy, to say the least.  Again.  Every year in the Tiner house seems to be a doozy.  We didn't move this year, which is great, since we moved every year from 2012-2016.  Luke didn't live in the same house for more than a year until he was five years old.  We love our house and our pool, although the plumbing is pretty awful, as is the electrical.  I often wish my dad were alive (for a lot of reasons), but the shoddy electrical would have been taken care of a long time ago if he were.  Chris just let me know that our garbage disposal went out.  But with that, I am grateful to be able to own a home, as I know many in my circle of friends and family are unable to because of the housing markets they live in, or because of the employment circumstances they find themselves in.

Mom always started with Dad, so that's where I'll start.  Chris began his fourth year pastoring at Lake Houston Church of the Nazarene in Humble/Atascocita.  He became an elder in the Church of the Nazarene this April, something of which I am so incredibly proud of, particularly as there was a time in our marriage/life when I didn't think it would be possible.  His pastoral title at church has changed a little.  He is currently the Pastor of Youth and Worship.  He also preaches a lot (for a youth/worship pastor), and I always feel blessed when he does.

If you have given up on God's ability to change someone, remember Chris.  He is a new creation, an obedient son to his Heavenly Father, and a wonderful pastor.  He has very high standards for himself, but knows Who to lean on in order to try and meet those standards.  He is an amazing father, a wonderful husband, and I feel very lucky to be married to him.  He's gone through a physical transformation as well, and has lost about 35 pounds, runs daily, and is thoroughly attractive.   :)

Kadee Joy (who really just goes by Kadee, but I'm her mom, so I'm not changing) started high school.  HIGH SCHOOL.  She started off with a bang, too, which took the form of marching band camp.  It's Texas marching band, and it is INTENSE.  She also started off by catching the eye of a super nice and goofy sophomore, and now has a boyfriend.  We're all trying to adjust.  :)  High school has been challenging, but we're grateful that we can be open and honest with her (and her with us) about those challenges.

Andrew is a 7th grader now, and loves school.  He loves his dog Carlos 1000 times more.  Any conversation will usually segue into his love for Carlos, his worries for Carlos, his plans for Carlos, etc.  He is still super compassionate, loves his family, is very obedient, hates for others to get into trouble, and spends a good part of his time drawing comic strips.  These comic strips are strewn all over the house, and he adds multiple pages to them each day.  He's getting very tall, wears the same size shoe as me, and is beginning to make plans for his future, which include a wife, eight children, and protecting Carlos from crocodiles.

Jeffrey entered middle school as a 6th grader this year (probably the shortest one at his school) and spends much of his time correcting the bad language of those around him.  He switched to Dance halfway through the first quarter and gave his first dance recital at the beginning of this month.  He has loved dance from a young age, and made us so proud as he danced WITH his peers.  He was one of two boys in the whole recital, and he could not have cared less.  He and Andrew are in the same class and are extremely happy there.

Luke is a first grader, and around November started reading EVERYTHING.  He is a very typical boy (both the good and the bad), has a lot of friends, and bosses around his brothers when at home.  This also helps them to learn how to defend themselves (thanks, Luke).  He loves video games, playing outside, playing "battles" at recess, and dreams of joining the military.  He keeps me young and ages me at the same time.

Then there's me. My last blog left off on my mental health road, which was rocky (to say the least).  I ended up undergoing 30 treatments of transcranial magnetic stimulation (TMS) which is a more intensive treatment of depression, and did wonders. I was able to taper down to a very small dose of both my anti-depressant and anti-anxiety medications.

The last day of school, I found out that the music teacher at my neighborhood school was retiring, so I applied for the job, and was thrilled to get it.  I'd never had the opportunity to teach Luke, and now I would get to, making me able to teach all of my children at some point.  I started off the school year organized and excited.

Just a week or two in, I started to have odd symptoms.  My hands were shaking all the time, I was dropping things, and I began experiencing numbness and tingling all over my body, but particularly in my extremities.  I noticed it would get worse the more I worked.   I went and saw my endocrinologist, thinking it must be thyroid related, but every level came back normal.  I'd gotten a concussion during the summer while counseling teen camp, so made an appointment with my neurologist to see if that had something to do with it.  She scheduled an MRI.  I didn't make it that far.

On September 28, I woke up completely paralyzed.  Chris had to carry me down to the van after several failed attempts on my part to walk/move.  He asked me where I wanted to go, and I said the Woodlands, since that's where my neurologist was.  After two days of blood work, tests, MRI's, CT Scans, X-Rays, a neurosurgeon came in, did a few reaction tests on me, and then let Chris and I know that he actually had answers for us.  He'd found a skull malformation called Arnold Chiari malformation, Type 1, that had caused my cerebellum to extend down into my spinal column, almost completely blocking it.  I would have to have brain surgery in the next two weeks.

The weeks leading up to brain surgery were very strange.  I couldn't walk without support, couldn't drive, couldn't work, couldn't talk well.  And all I could do was wait, while my insurance company decided whether or not to approve the surgery.  I had the surgery the week after they approved it.

Recovery from this surgery is horrific.  HORRIFIC.  The worst pain of my life.  I was in the ICU for three days, as they attempted to manage my pain, my nausea, and get me to the point where I could walk independently.  Once I was able to do that I went to a regular hospital room, where I continued to try and heal enough to get to go home.  I went home the fourth day from surgery.  Chris was with me the first two nights, and my twin sister (who'd graciously flown down from Canada to help) stayed with me the third night.  They had to endure my anti-nausea temperature regimen of keeping the room at a balmy 60 degrees.

The next three weeks were still awful.  Not pain-wise, but nausea-wise.  I've experienced a few times where eating is a problem (morning sickness for four children), but this was really, really bad.  My mom had switched with my sister, and was constantly trying to get me to eat/drink anything.  I don't know what I would have done without my husband, sister, mom, and family (including church and school families).  It was a rough, rough, road.

And then I turned a corner.  I know that I had countless people praying for me throughout.  Thank you.  Once I turned that corner, I lost a myriad of symptoms I'd been having for years.  I became myself.  Depression, suicidal ideation----totally gone.  It also restarted my pain/sleep tolerance so that I could mentally work through getting things done without giving up because of lack of sleep or too much pain.  I still have work to do in that area, so you can pray for me on that.  Brain fog is gone, and my memory is better.  At least, it's better now.  Unfortunately, I have lost many, many memories, especially from the last few years.  They're just gone.  Here's to making new ones to replace them.

I went back to work, and with the help of my team, school, husband, and students, put on my first program for new school and it was great.  As soon as school ended, my body crashed.  I think my recovery is still continuing, although it's hard to admit it sometimes. Plus I miss my extended family.  The holidays are still very hard.  I was grateful to be with my little family, and we did have a wonderful day together.  We did a Secret Santa exchange for the first time, which helped the kids harness the idea that many it is much better to give than to receive.

So here we are, at the end of 2018.  I am grateful for where we are, glad to be through what we've been through, and hopeful that, regardless of what comes our way in 2019, we will be able to meet it with the same encouragement, peace, strength, and wisdom that only comes from the One who has been with us all the way.

"The Lord bless you and keep you;
The Lord make his face to shine upon you, and be gracious unto you.
May his countenance be upon you and give you peace."

-Numbers 6:24-26

Love,

Chris, Stephanie, Kadee Joy, Andrew, Jeffrey, Luke, and Carlos Correa (the dog) Tiner

To Hell and Back

Shortly after my last blog post, I went through hell.  The PA that had been increasing my doses of medication to addict levels.  How do I know they were addict levels? You'll see in a bit.

Shortly after my last blog post, she dropped me as a patient without telling me.  I kept trying to call her because I would run out of my medication early, and she would call in the refill. Except this time she wouldn't because apparently she'd gotten into some trouble for calling in refills without actually seeing me since it was a controlled substance.  And she was writing 15 day prescriptions, not 30, but scheduling me for 30 day appointments.

So she wouldn't answer my calls.  I could hear her in the background telling the office staff not to let me talk to her because "It would take ten minutes to talk to her." And so I started cutting my pills in half until my last scheduled appointment.  And then, I finally ran out.  At that point, I went into full on withdrawals symptoms.  I had been on 6mg of Lorazapem, 225 of Effexor, and had nothing.  So my body rebelled.  It was horrible.  I couldn't sleep.  I couldn't eat.  I was in hell.

In desperation, I got a hold of the office and they said I could see the primary psychiatrist.  I scheduled an appointment for the next day.

And then the ice storm hit Houston.  And everything, including my doctor's office, was shut down.  Again, I panicked, and was desperate.  Luckily, I was able to set up on online, Skype-like appointment with him.

We talked for over 45 minutes. That's when he told me that if I stayed at the level of medication I was currently being prescribed, the pharmacy would flag me as an addict and no longer give me medication.  He also told me that the two medications I was on were not meant to be given together...that the anti-anxiety medication would actually counteract the anti-depressant and cause me to become more suicidal.  So he wrote up a new anti-anxiety medication prescription and put in my regular anti-depressant.  Only problem was that my pharmacy was closed because of the ice storm.  Luckily, Walmart was open nearby, and they filled my prescription.

My body was filled with relief as soon as I was put on the correct drug combination.  I could tell immediately that it was the right combination.

The battle I had to face next was tapering down off of the addict levels I was on, particularly for my anti-anxiety medication.  It has been a slow, and difficult process, but I'm now down to 1 mg per day.

In the midst of tapering down, and seeing improvements daily, I received news that had been previously thought impossible:  my insurance would cover a treatment for depression known as TMS, transcranial magnetic stimulation.  So every week day for six weeks, I went in and had the treatments done.  When I went in, I took a depression evaluation to determine just how depressed I was.  The most severely depressed score a 26.  I scored a 21.

Halfway through my treatments, I scored a 1.

These last six months have not been without difficulties.  As anyone who has had to taper off an addictive medication will tell you, it is difficult.  My personality had changed significantly.  My dose was so high at the beginning that I was overly social, overly talkative, very loud, very high energy...which sounds great and was great, but was not me.  Chris would often have to pull me aside and let me know that I was being a bit...much...which of course I didn't take kindly too because  I felt like "Well, at least I'm not suicidal!  Let me be me!"....even though I wasn't really me.

In case you're curious, I sought out a possible medical malpractice suit.  Every lawyer said the same thing: "If you'd actually killed yourself, we could take on your case.  But you didn't, so we can't".  Consider the message that sends.  I also reported the PA to the Texas State medical board.  She told them I had never mentioned suicidal ideation (a lie...she asked if I'd thought about hospitalization after I mentioned my attempts), and that she had gone over the side effects of the medications together (another lie). 

As I've tapered off, I've gotten back to my "normal" self. I still have days where I'm more irritable, where I tear up easily, but they're at least reasons I'm feeling that way.  The cloud of hopelessness and despair has left.  I'm still a little fragile, but am no longer having panic or anxiety attacks, no longer feel a burden to my family, and feel that I do have a purpose in life and that God continues to walk alongside me.  I am actually interested in life.  Interested in people.  Able to attend my kids school functions.  Able to be present.  I still need alone time to recoup after school, but am not doing so in darkness and hopelessness.

I am grateful that He carried me when I needed Him to, and that I had a supportive family, a wonderful husband, loving children, a counselor that was able to meet me at my moments of need, and an encouraging and accommodating school family that allowed to me to receive the treatments that I needed.

Mental health issues are every bit as serious as physical health issues.  Please take them seriously.  Please do not belittle or try to talk someone out of their mental health issues, including yourself.  Seek help.  And if you don't know where to find help, contact me.  I've been there.  I know what it's like.  It's real.  It's horrible.  And it only grows stronger in isolation and darkness.

I finished school yesterday, and am looking forward to a lot of time with my family, and lot of strong Texas sunshine and pool time, church activities, and rest.  Thank you for your continued prayers. And don't be afraid to tell someone if you're experiencing feelings of hopelessness, a lack of interest in life, a feeling a of being a burden to your family, a feeling of not being good enough.  It is your brain deceiving you, and you need help for it, just as you would if you had diabetes or cancer.  You cannot think  your way out of it, pray your way out of it...And I realize as a pastor's wife that seems harsh, but it's true.  I would never tell a cancer patient not to seek treatment and just to find a hobby to try and get over their cancer, or to just pray away their cancer.  It works the same way with mental illness.

May we break the stigma and shine a light on the seriousness of mental illness and know how to help those battling it, including ourselves.

On why I've been the way I've been

My first episode was in July, on the third afternoon before Vacation Bible School.  The night before had been wonderful in the drama department where I was teaching.  The discussion after VBS that night and the next morning with Chris hadn't been so nice.  We'd had a very emotional discussion about something that we'd argued about before, and it had been pretty intense.  We went out to lunch the next day, made some good strides as I apologized for what I needed to and Chris communicated what he needed to.

After paying for lunch we got in the van and stopped by McDonald's to pick up some lunch for our kids who Kadee Joy had been watching just a few blocks away.  And that's when it hit.  I couldn't breathe.  I couldn't talk. I couldn't lift my arms.  I couldn't communicate.  It was terrifying.  Chris finished getting the food and then drove us home.  He carried me up the stairs (I still couldn't walk or talk), and put me in bed.  He called several medical professionals we knew at our church.  The one thing I was adamantly able to communicate was that I didn't want to go to the hospital.  I made horrible, animal sounds as I tried to communicate.  Once I was able to talk I kept crying, saying "I don't know, I don't know, I don't know!"

After about 45 minutes, Chris was able to convince me that we should go to the ER.  They ran EKG's, did a CT scan, ran blood tests, and determined that I'd....had a panic attack.


But I was DYING.  I COULDN'T TALK. I COULDN'T BREATHE.

I began seeing a psychiatrist shortly thereafter who prescribed me some sleep medication that complemented my antidepressant, and the panic attacks seemed to stop.  I didn't really even think about them anymore.  I was diagnosed with anxiety disorder, panic disorder, and continued major depressive disorder.

Things seemed better until October 1st, the morning of the Las Vegas shooting, the same day I also started a new medication.  I experienced a level of anxiety that I hadn't experienced since starting at a new junior high at age 13.  It was horrible. I had trouble teaching that day, but was able to make it through.  The next few days were fine.  And then it hit back with a vengeance that Friday.  I barely made it through the day.  I called both my psychiatrist and the doctor who had prescribed me the other medication.  We immediately stopped the other medication, and then added an anti anxiety medication to my normal meds.

It helped....a little....but the panic attacks came back. I had two to three every single day after school as soon as I got home.  I couldn't be with my family.   I would just have the attacks, collapse, and wake up to go back to school the next day.  We tried changing my other medications, but the panic attacks wouldn't go away.

It got really bad the Monday before my second grade program.  I had one in front of students and other staff members.  My medical team, husband, and principal determined that I would not be able to go back to work that week.  I missed a program.  That's a big deal. When I say it got bad...it got as bad as it can get for someone dealing with mental illness.

I started seeing a counselor on top of all of my other doctors.  She was helpful immediately.  I started seeing a family physician also so that we could get a better "whole" picture of my health instead of just bits and pieces.

I went back to school after Thanksgiving, pushed the Christmas program back a week, had a pretty successful last two weeks and program (got down to one panic attack after school per day), and than slumped into Christmas Break. 

I have started painting.  Chris, the one who has carried me through this, created a prayer station for me when I needed a quiet place to go.  I journal my daily episodes.  I have a list of reasons of why I should still be alive.

Mom came down for Christmas and is visiting.  She's been wonderful about getting my house into order.  She's had to drive me home a couple of times after I start having a panic attack in Michael's or in the celery section at HEB.

My sister is coming to visit in a couple of days.  She's had her own run-in with mental health, and is good about finding things that are helpful.

I tried to go to church today for Christmas Eve.  I only made it about 30 minutes.  My church attendance is spotty because of it.  And I'm a pastor's wife.

My daughter has been amazing.  She calls when she knows I'm about to have one, helps me get into bed, puts the lavender on, stays with me until Chris can get there.

I worry about my kids.  I worry about what they will think of me.  I worry about what they are missing during this time in my life.

I cry a lot out of guilt.  I cry a lot out of sadness.  I cry a lot out of frustration. 

I pray a lot.  I pray for my kids.  I pray for my husband.  I pray for my students.

And I pray for healing.  I pray for normalcy.  I pray for a day where I don't have to even think about having a panic attack.  I pray that I will get to a point I can focus on my kids and husband as much as they are focusing on me. 

And I pray that God can help use my story one day for His greater purpose.

An Evening in a House Where Autism Lives

Jeffrey and Andrew begin it.  We've just finished eating, Grandma and Grandma have gone home, and Daddy is watching a basketball game while Mommy sits next to him.

"Tag!" Jeffrey screams.  Andrew giggles loudly.  Andrew always giggles loudly, and sincerely.  Jeffrey giggles as he runs away from Andrew, who catches him a few seconds later.  On the game goes, with yells of "No tagbacks!" and giggles trailing up and down the stairs.  I use the word giggle a lot as I write this.  But giggles are what I hear.  Up and down the stairs they go, chasing, tagging, giggling more, chasing.  Round and round the downstairs they go.

This sounds normal.  But soon, the script comes out.  It's usually accompanied by a British acccent.  Lines repeated over and over again, as one gets tagged and the other one runs away.

"What is that from, boys?" I ask.

Andrew answers that it is from a Veggie Tales movie.  The game is sincere, but their verbal interaction is scripted.  I always ask where their lines come from.  They can tell me now.  For me, it makes me feel like I'm getting into their heads a little bit.  What scene in what movie made you think these lines were appropriate for this situation?  And now they can tell me.  For years, they would just repeat lines, and I didn't know why they said what they did, when they did.

Then Luke joins in.  "Jeffrey, if you come here I'll give you 'Just Dance'!"

Jeffrey falls for it.  Luke tags him and Jeffrey runs away.  Jeffrey keeps waiting for Luke to deliver "Just Dance".  But Luke is neurotypical, so Luke lies.  Jeffrey takes Luke's promise literally, even though he is four 1/2 years older than his brother.  Jeffrey will always take you literally, although he's starting to show some understanding in joking, as he questions following a ridiculous statement, "You're just teasing me!"  Yep, we are, Jeffrey.  Jeffrey is easily upset by statements like "If you keep watching that TV, your brain is going to turn to mush."  He grabs his head, cries and says, "No!  I need my brain!"

Andrew delivers a line that displays his autism.  "Jeffrey and Lukie, I need you to stand still so I can tag you!"  It's honest, although unlikely. Most 11 year-olds would not make such a request during a game of tag.

"Let's play Duck, Duck, Goose!" Luke says.  "I'll be the Duck Duck guy!"

Luke often dominates the play between the brothers, even though he's the youngest by far.  His 11 year old brother often does what he asks.  His 9 year old brother forgets that he can just say no if Luke asks him to do something he doesn't want to do and instead just cries or screams.  We're working on it.

"Come on, Jeff!" Luke yells.  Jeffrey has refused to be called anything but Jeffrey for years.  One day, several months ago, Luke started calling him Jeff.  And Jeffrey responded to him.  I don't know why I love this, but I do.

Side note: 

I remember teaching Andrew turn-taking starting when he was 18 months old.  He had already qualified for speech.

I would hold a ball.  "Andrew's turn!"  "Your turn" meant nothing to Andrew.  Who's "your"?

I roll the ball to Andrew.  He giggles as he grabs it.  "Mommy's turn!" I say.  He rolls it back to me....after the first 3 sessions.  We rejoice.  He is turn-taking.

Every communication and social skill has been taught, sentence by sentence, modeled, practiced.  Disney, Pixar, Veggie Tales, Peppa Pig, and an inordinate amount of other movies and shows have been the source of most of my children's learned language.  They have a picture and can see characters interacting while they speak.  Then they take what they see and hear, and try to use it in real life.

Back to tonight...

Jeffrey is the first to finish the game.  He loves the game, but grows tired of the human interaction.  It's exhausting for him.  He prefers "Just Dance" because he "interacts" with digital characters that always do the same dance moves with the same music.  No changes, no spontaneity, no confusing questions or requests.

 Andrew lasts much longer.  He has empathy, loves companionship, and is naturally more patient. Plus he loves to have fun.  And tag is fun.

Luke doesn't realize his brothers are different yet.  His communication and social skills at his current age of 5 are significantly better than both of his brothers already.  I wonder what he will say when he realizes that they are different.

The beauty of tag and Duck, Duck, Goose is that Andrew or Jeffrey initiated the play, and the other agreed to participate.  That is HUGE.  Would not have happened even a year ago.  And they stuck with it for about 15 minutes.  That wouldn't have happened either.

Some parents wouldn't allow tag in the house.  With my boys, I have to see the forest instead of the trees.  Yes, they might run into something playing tag...but they're using skills that are incredibly difficult for them to master.  And they just started that skill at nine and eleven.

I'm a pretty inflexible person, or at least I have been during much of my life.  I remember with Kadee Joy feeling like her behavior or "performance" defined me as a parent.  Then I had my sweet Andrew, who couldn't talk until after age two, and who wasn't potty trained until age 7.  Having children who have a disorder that changes the speed of the learning process broke my inflexibility when it came to them.

The games are over.  Jeffrey is playing "Just Dance."  Andrew is making battle sounds while playing with all his Star Wars figurines.  And Luke is sitting next to me, asking if he can "help me work."  They are back where they are comfortable.

Side note:

We got the kids a basketball hoop for Christmas.  The boys ask to play with it everyday.  All 3 of them.  It's a wonderful thing.  I've been teaching them skills, like what to do if the basketball goes into the street (come get Mommy so she can check the road after telling you to check the road so that you don't get run over...then we cheer when the ball is brought back safely).  It's a beautiful thing. I remember the days of locking all the doors because Andrew was such an escape risk, and he didn't even have the ability to tell people his name.  Both boys have had multiple close calls of getting run over because they run away in the parking lot, or just head towards the car from a store or church without even looking to see if any vehicles or people are coming towards them.  This is still somewhat of a problem, but nothing compared to their earlier years.

Back...

When it's time to go to bed, Luke is often already in bed.  He doesn't wait for me to tell him...he tells me.  "Mom, I'm tired. I'm going to bed now."  Jeffrey freaks out a little bit, but goes to bed after a promise from me that he'll be able to do something tomorrow.  "I'll go to sleep, and then I can play basketball tomorrow?"  "Yes, Jeffrey."  Sometimes he has to ask it a few times, just to make sure..

Andrew can't turn his mind off.  I remember Chris and I taking turns laying next to him from the time he was two until he was four because he was so unsettled and couldn't go to sleep,  These were the same days that he would often try to go out the front door.  Nowadays, there's no risk of escape...just that he won't be able to fall asleep until 11 or 12, and then won't have enough sleep to  face the next day.  Tonight isn't as big of a deal.  It's Saturday tomorrow.  He could sleep in, but Andrew doesn't sleep in on weekends or days off.  He and his brothers are up and at 'em right at 6 a.m., even though they would be dead to the world until forced to wake up at 6:45 on school mornings.

The fire is going, it's cold outside, and Jeffrey heard that snow could be coming.  He plans on building a snowman and making snow angels.  At least, that's what he tells me.

Jeffrey made plans.  This is a skill he's had for a couple of years.  I love when Jeffrey makes plans, although sometimes I dread the times when I have to tell him that his plans will not happen.

Jeffrey is reading this blog.  "I love playing basketball.  But snow is coming, so I can't play basketball!"

I'll end it there.  We'll see what tomorrow brings.