It is well with my soul

This is not written as a “Poor me! Pity me please!” post. This is to give those who have the fortune of not experiencing chronic pain (or chronic health issues of any kind) a glimpse. I am determined to be a voice for the untold numbers of people fighting a battle every. single. day.

My fingers ache. Bone deep pain. They are slow to respond to my brain’s message to move. Having to grab something with finger strength and grip alone is difficult. My fingers are hesitant to change position if they’ve been in one position for very long. Mindlessly loyal to the status quo. “We’re good here! It’s too much work to move! Thanxbye!”  I find myself looking at them to get them to move. Gently (sometimes not so gently) urging them to do as they’re told. They feel swollen even though they’re not. That feeling of too-full, overripe. Like they may split open like a past ripe melon.

My head. Low grade headache is the norm. I can not remember what it feels like to not have a headache. Migraines 3-4 times a week. Sometimes it feels like my skull is made of knives and my brain is bouncing off them. Sometimes it feels like my head is in a vise that is being tightened. Sometimes like a knife through an eye (or temple)  into my brain. Foggy brain. Words called forth disappear into vapor. Default emotion being numb or depressed or worn out. I joke that I have a “Man-brain” now- I’m almost totally unable to multi-task. We’re depending on Noel’s memory and that is a little scary!

I have burning pain down both arms and sometimes the backs of my legs. In my arms it’s constant. The only thing that changes is how badly it burns. From a low-burn to throbbing, aching flame. My head feels too heavy for my neck. Sometimes it’s so bad I have to sit in “my” chair and recline a bit to take the pressure off my neck. My neck and shoulders are tight and ache. Turning my head to either side hurts. Shooting pains up my head and down my arms.

Last October-early November, I realized I’d had a headache or migraine everyday for at least 2 months. I’d just adapted to it. Which is absolutely frightening. How quickly does dysfunction or illness become “normal” to us! What else have I adapted too that is harmful and destructive? I went to my doctor, I take headaches changing very seriously now after a friend’s brain tumor. He ordered a brain MRI. That came back clean. At the urging of my wise friend, I requested a Cervical Spine MRI. This came back with some items of interest. Herniated disc. Syrinx. The syrinx brought in the neurosurgeons. Waited 3 weeks to hear back only to discover they did not want me as a patient. Second referral. Waited weeks. Finally called the big city hospital only to discover my doctor’s office hadn’t sent the information they were supposed to. More weeks go by in incredible pain. Holidays and anniversaries. I’m checked out in pain. Or from the medicine. Finally see neurosurgeon. He doesn’t think my pain is from the syrinx or hernia (which is tiny). Orders another round of scans. Brain to butt. Wait weeks for results. Finally get a blow off call. “Everything looks great! Come back in a year so we can check the syrinx!” Super!

Everything looks great!!!  I’m bedridden many days. Parenting from a pillow. What now? Physical therapy- I got kicked out. “I’m not helping you. There’s no point in continuing.” More pills. Vicodin, cymbalta, lyrica, topamax, nortryptaline, nabumetome, toradol, tramadol, flexeral, steroids, imitrex. Meet with local neurologist. Who hadn’t read my file before seeing me. Proclaimed that I had sleep apnea. Get a cpap and you’ll be fine! But we’ll try propranalol for migraine prevention- just in case. He made sure to tell me that it wouldn’t cause weight gain like some other meds… One week of taking it and I gained 14 pounds. Super. More vicodin, gaba-pentin, also trigger point injections- which worked 1.5 times. Occipital nerve block. Nothing. Have two sleep studies. Get a cpap. I’m sleeping better but the pain is the same. The circles under my eyes are the same. Did I mention I went off everything? I don’t drink alcohol or consume artificial sweeteners, so that was easy. Also no caffeine, gluten, citrus, nightshade, dairy, eggs, blah blah blah. Supplements! Yes! Magnesium, CoQ10, Iron, EFA’s, Multivitamin/mineral, garlic, cayenne, and I can’t remember what else.

Chiropractor, physical therapy, massage, myofascial release, epsom salt baths, prescriptions, essential oils, natural supplements. Blood tests to rule out Lyme, Rheumatoid Arthritis, and all the other usual suspects. All negative.

And prayer. Praying without ceasing. Family and friends praying for me. Crying and petitioning God on my behalf.  Having hands layed on me. My head squeezed tight and commands for the pain to go in Jesus’ name whisper-screamed in my ear. Asked how I’m doing and giving an honest answer to be met with; “Don’t claim that!” “You’re healed in Jesus’ name!” “Read more healing scripture!”

I was in crisis mode for over 6 months before I realized that this crisis wasn’t a crisis anymore. This was my new normal. For how long, I had no idea. But I had a family and life had to happen. Birthdays came and weddings came and important days came and I had to get out of bed. We couldn’t keep eating takeout and fast food and frozen pizzas that my saint of a husband brought home. Bills had to be paid and I’m the bill payer. So I had to choose to make a sacrifice. Birthdays, weddings, special days and commitments I’d stupidly made (thinking, surely I’ll be better by then! Ha ha.) had to be honored and followed through on. Laundry had to be done. Supper had to be cooked. Life must continue. So I cooked and baked and decorated and celebrated and photographed and helped and it was lovely. Once an event was done, an obligation fulfilled, my body would collapse. Horrific migraines- so intense that I’d rather be in labor again than experience that pain. Exhaustion. Pain from head to toe. Sometimes for days after. This was the choice I had to make. To be present for my children, my family, my loved ones. I had to suffer.

It hurts to be touched. I hug my children anyway. I cry when my 4-year-old asks me if I’m better and if he can touch me. It hurts to drive. I drive my children to activities and homeschool events anyway. It hurts to use my camera. I take photos anyway. It hurts to sit in most chairs. I go places anyway. It hurts to chop and stir. I cook anyway. People with chronic health issues do it anyway. When they can. Sometimes they just can’t. “They’re missing church again!” “They aren’t at their child’s event again!” “They didn’t bring food to the potluck!”

My skin thickened. Scar tissue. From the judgement. The comments. The silence. The assumptions. The disappointment. The isolation. The rejection couched in spiritual words. I am embarrassed to say that I have feared man more than God. My focus shifted to pleasing man and worrying about that rather than on seeking God. Hurt and pain from people caused me to assume God was waiting for me to do it all correctly. That He was maybe angry, definitely impatient for me to say the right things, do the right things, then He could fix me. If only I would (fill in the blank) I started to feel condemnation when reading His word.

But then… Oh I love that… But then!!!!

Mine eyes were opened, my heart set free. A confrontation with a person (which, random, right?!?!?) A weekend filled with renewing and fulfilling conversations. The book of James. The “Oceans” song by Hillsong. A Sunday school class and a sermon at a church in North Carolina. Beta-testing a personality study, and more things that  I just can’t remember. Brain still foggy. I believe that through my suffering I am being perfected. Perfected meaning, being completed. I do not believe that God sent my pain. I believe He is using it for good. I am a stubborn, opinionated person. I have learned mercy and grace and humility through this experience. In possibly the only way I could learn it. By having to receive those things from others, from God and from myself.

I am no longer focusing on people or the why. I am focusing on the who. (whom). Nothing about my pain has changed. Nothing. We are pursuing a procedure that could help relieve some of the pain. Insurance has to approve it. It may make a giant difference in my pain. It may not happen. It may not help. That’s not the point. The point is that I’m not a victim. I don’t need to apologize or strive. Through the suffering, through the storm in my life, Jesus is still here. He is with me. He is for me. The point isn’t a perfect life with nothing bad happening. The point is when the trials come, and they are guaranteed to come, it’s not if they come but when they come. James 1:2-4 “Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.”

Instead of running around trying to “do everything right,” like there’s some formula for a perfect life, I’m focusing on God. On Jesus. I’m reminding myself that everyone is in a battle. We don’t see most of what people are fighting. Yet we are so very quick to judge. To assume. To think that if they’d just do it how we did it, they wouldn’t be where they are. I’m learning to respect each person’s journey and story. To not limit God and assume He can only work in one way. He is the God of abundance and beauty and variety. My eyes are finally able to see Him in the storm and the darkness. He is the light and the hope regardless of circumstance. The strong tower that will keep me, keep you, safe. And that is more than enough. It is enough that I really and truly can say that it is well with my soul. Right now. In the midst of this storm. In the dark of night. It is well, it is well with my soul


Where feet may fail and fear surrounds me

“You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand
And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You’ve never failed and You won’t start now
So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine
Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior
I will call upon Your name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine”

This song has been my anthem for the last 9 or more months.

The last few years I have struggled with chronic migraines. The last year I have had chronic daily pain and migraines (3-4 migraines a week, “regular” headaches daily). I have not had a single day pain free. It took me about six months to realize that this wasn’t going away any time soon (because I’m super quick to catch on to things), and I needed to adapt to my new normal. For however long it stays. The last few weeks I’ve finally started to see some victories. I finally feel like I’ll be ok no matter how long I am in this battle. It is exhausting, it is guilt-inducing, it is frustrating, it is suffocating, it has absolutely turned my life upside down.

However, “where feet may fail and fear surrounds me, He’s never failed and He won’t start now, So I will call upon His name, and keep my eyes above the waves, When oceans rise my soul will rest in His embrace, For I am His and He is mine.” I know that God sees me and I trust in Him. Do I believe He caused this? No. Is He allowing it? Yes. He could end it. A miracle or the right pill or procedure could fix it. It hasn’t happened. Yet. The circumstance is not the point. The pain and the healing are not the point. What will I do in the depths, is what matters. Will I trust Him enough to allow His grace to be enough? Will I step out of the boat, into the unknown and keep my eyes on Him? Will I love Him? Will I live for Him? Will I believe Him? Honestly, I’ve had some moments (days, really). Dark moments where I’ve doubted and questioned and considered giving up the fight. And it is a fight. Every single day. Sometimes every minute. At first I joked that if I got out of bed, that was a victory. Then the days where I didn’t make it out of bed began to increase. Then it became if I was still able to laugh that was a victory. Then the days I couldn’t laugh increased. Finally I am to the point of if I’m still alive and love Jesus then I win. “Hi, I’m Lindsey! Lowering the standards for women, wives and mothers everywhere since 2000. You’re welcome!”

I’ve been forced to accept that I can’t do it on my own. Not even with my fantastic husband. I am a doer and a fixer and a nurturer and a caregiver and it is hard to be unable to do those things. To be on the receiving end, instead. It is humbling and clarifying. I really am enough. Because of Jesus, I am enough. I don’t have to do or work or fix or give anything to anyone and still He loves me. In case I was confused about who really “earned” my freedom. My good works weren’t enough to save me before I accepted Jesus and they’re not enough to save me now. In fact they are completely unecessary unless they come from the overflow of my heart and not from a sense of guilt or obligation (that’s called religion. Which Jesus wasn’t a fan of.) Being absolutely unable to accomplish the basic functions of a mom and wife and woman have burned this into my soul. It’s not what I do, it’s who I am. I am the beloved of The Most High God.  Irrevocably a child of God. He doesn’t need me to do anything. I’ve finally grasped that concept. No more guilt (well okay, way less guilt, because hello, I’m a mom). No longer fearing that the word “No” was a four letter word! It isn’t! I promise you, you can say it! Even in church! To church people! It’s not a swear word! Try it! I’ve said more “No’s” in the last few years than in the previous decade. Wow is it freeing. For real, try it. Next time someone asks you to do something you really don’t have the time, energy or money to do, just say no. They might faint if you’ve never said it before, or ask to pray for you, that’s ok! Just keep using it and they’ll get used to your boundaries. I promise!

The point of all this-yes there is a point- is to say I’m going to try to reenter the land of blogs. I also want to encourage others who are suffering or struggling in all the thousands of ways people can. His grace abounds in deepest waters, His sovereign hand will be your guide. Where feet may fail and fear surrounds you, He’s never failed and He won’t start now.

He’s never failed and He never will.



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On why I hate New Year’s Eve

December 30th, 2005 I got the call that Grammy had been rushed to the hospital with severe breathing problems. Collapsed lung or pneumonia or maybe-those-spots-really-were-lung cancer or all of the above. It didn’t seem super serious, she was awake, alert. She was receiving oxygen at the hospital as she had been for months at home. No biggie for a chain-smoking 79 year old. We kept our plans of hosting a New Year’s Eve party.  The next day, New Year’s Eve, uncles, aunts and cousins had flocked to Grammy’s hospital room. Noel stayed home with Ethan and Will, (who were 3 1/2 and 14 months) and set up, cooked for and hosted our party. I went to the flower shop to pick out flowers for Grammy. They were low on bouquets, they only had Lilies. They told me the hospital doesn’t usually allow such fragrant flowers. I told them who I was and who they were for, (my aunt works at this flower shop), they bagged the flowers and hugged me. Tears came to my eyes as I realized this may be more serious than I expected. Up to Grammy’s room. Most of the family was there. For some reason the conversation kept turning to food as Grammy sat there with her cup of canned fruit and water. At one point I was alone with Papa and Grammy. Those 30 minutes spent are sacred to me. I shared with them that we were expecting. Grammy grinned from ear to ear and asked all kinds of questions. Papa just held Grammy’s hand. I told them if it was a girl she would be Natalie Margaret- Grammy’s name was Margaret. She was pleased as punch about that possibility. I told them they were sworn to secrecy for a few weeks. (No one beside Noel and one friend of mine knew I was pregnant.) Nods and smiles. Everyone trickled back into the room. It got late. Grammy kicked us out. I hugged her, kissed her forehead, told her that I loved her and I left. I drove home bawling. Praying she’d recover. I went in to my home filled to bursting with friends and family having a wonderful time. I tried to smile and play. I wasn’t very convincing. A few hours into the new year my phone rang. There was no question why my phone was ringing. I was sobbing before I answered. It was Mom. Grammy was gone. I sobbed and sobbed and finally slept and woke to sob some more. The next day I got the bouquet of Lilies back. The reek of them turned my pregnant stomach. They made me nauseous but they were my last gift to her, they stayed in the far corner of the dining room until death claimed them too.

At Grammy’s visitation I learned from an aunt that Papa was telling people I was pregnant. This one nugget of hope and happiness had bloomed in his mind; there’s a baby coming. I gave Papa a break and didn’t tease him about forgetting that little detail of being sworn to secrecy about my pregnancy. You get a free pass from a lot of things when your spouse of over 60 years dies. I had to tell my mom that she would be a Nana again in the back room of the funeral home at her mother’s visitation. The relief that Papa wan’t losing his mind, that I was in fact pregnant brought relief and fleeting smiles amidst the tears and grief.

7 months later we rushed to the hospital thinking something very bad was happening to my baby. Fresh blood, intense pain, but not contractions, days before my due date when the boys had been overdue. The nurses were not panicked, but urgent. In the chaos and blur I heard a voice. The voice of a friend who I’d known since high school. Slightly awkward seeing each other for the first time in many many months and she’s gonna examine my cervix, but we handled it with class because that’s how we roll. I was dilated to 8 cm. I couldn’t wrap my brain around the fact that I was in labor. 3 pushes and a few minutes later, my friend handed me my tiny, swollen, beautiful little girl. Natalie Margaret had arrived. The second person to hold her, the person to hand her to me, my friend, was the same nurse who had been one of the people with Grammy when she died.

Last to first. Death to life. The beauty of the symmetry takes my (OCD) breath away. Even in the dark and the sad and depths of despair- He is there. God is there. If we trust Him, trust that He has a plan, we can see Him even in the darkest of night.

Psalm 30:5b “Weeping may last for the night, but a shout of joy comes in the morning.”




For Papa

My Grandpa (from here on out referred to as Papa) is in that hazy land between the living and eternity. He is almost 94 years old. He had a stroke Sunday morning. The kids and I went and visited him last Friday at his Assisted-Living home, his face lit up as he recognized us walking towards him. He laughed as he watched my kids be their goofy selves: Riley being brave and walking past strangers in order to get closer to the fish in the huge aquarium. Ethan lifting up his baby brother so he could see the fish more closely. Will talking about the huge moth and the creepy caterpillar pupa we brought for Papa to see. Natalie snuggling on my lap. I’m so grateful we went and saw him. The 3 big kids all shook Papa’s hand and told him “Good bye, I love you Papa.” So grateful for last goodbyes.

Papa and Grandma’s farm was my safe place as a child. Life was unsettled with my family as far back as I can remember. Young parents, figuring life out with two daughters. There was tension, stress, uncertainty. In the midst of the unsure, there was one constant: Papa and Grandma. Papa the pushover and Grandma the sweet but hard nosed. Grandma would encourage you in any crazy idea you had. She’d support you if you thought you could fly, but she’d be the first to tell you when you got too big for your britches. Papa was quiet but strong and steady and gentle.  There were rules and clear expectations. There was love and encouragement. And there were cookies. Always cookies in the glass jar.

Grandma broke their agreement and passed away first on New Years Day in 2006. Papa was 8 years older and it had always been agreed that he would go first. After she was gone, Papa’s light dimmed. They’d been together for 60+ years and I rarely remember them being apart. The only time I can think of is during the rare hospital stay or when Papa drove to town to pick us kids up or to get groceries from Gram’s carefully written list.

The last 6 years, Papa’s been looking forward to seeing Gram again. He’s so close to her right now, but his stubborn Bohemian blood won’t give up without a fight. No extreme measures have been taken. Oxygen removed, IVs unplugged. Still he lingers. Not much longer now. Soon, I pray, he will be in his safe place of rest.

Romans 8:38-39
For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
John 10:27-29
My sheep listen to my voice; I know them, and they follow me. I give them eternal life, and they shall never perish; no one will snatch them out of my hand. My Father, who has given them to me, is greater than all; no one can snatch them out of my Father’s hand.
“They that love beyond the world cannot be separated by it. Death cannot kill what never dies.” William Penn

The Major Appliance Death And The Minor Pooptastrophie of 2012. Also Titled: This Is My Life

     Two Fridays ago, Riley was napping and the big kids and I were doing something fun around the kitchen table when there was an almighty “Whack, whack, whack,” coming from my laundry room. The kids all hollered and my heart was racing. I ran to the laundry room and saw my washing machine trying to dance across the room doing the spin-cycle shimmy, still making that horrible noise…. After being momentarily stunned (and thinking, “NOOOOOOOOOOOOOOOOOOOOO!!!!!!!”) I turned the machine off and calmed the kids down. We ended up having such a crazy day after that(try to not be jealous of my glamorous life) that I actually forgot to tell Noel about it until Saturday. I threw a load of clothes in the wash Saturday night (as entertainment for our guests… What?!?!? Isn’t that what you do when you have friends over?) and us grown-ups sat around the table listening for weird noises… (this could be a new party game… I need to patent this….) I heard a couple noises that no one else heard. Then my lovely friend heard a noise too…. Neither of the men heard anything… Read into that what you will.  Finally the men heard the noise too. (Which, in their defense, we did have 7 kids 10 and under in our one level house, so there was a lot of noise. Yay for Mommy echo-locater hearing) Noel went in the laundry room and yep, there was a problem…. Boo hiss…. By then it was getting late so he was just going to look at it on Sunday.

    After a crazy Sunday at church (it involved us driving 2 cars, me having pre-migraine aura, Riley walking (literally the kid took 2 steps away from me) into the corner of a table and getting a ginormous black and blue goose egg on his forehead, and I’ve blocked the rest out… Typical Sunday, really) Noel worked on the washer. The sounds that came from the poor thing (the washer, not Noel), made it obvious that there was a very serious problem…. I’d been hoping that maybe it had just gotten out of balance from a full load.(what can I say, I’m an optimist!) Nope. On top of all this, Noel was leaving Monday morning for a work trip. A short 2 day trip, but he was going to be gone. He’d been planning on bringing our kids to Nana and Grandpa’s on Sunday afternoon, so I could have a little break, so he washed clothes he needed there. One crisis averted, yay!

   I was pretty confident that the kids and I had enough clean clothes to last a few days of no laundry. Oh, I crack myself up sometimes… Apparently I’d forgotten my awesome plan to “minimize” and be all organized and what-not regarding clothes. We’re wanting to sell our house so I’m packing up extra stuff so the kids can’t make a big mess. (which is totally delusional on my part to begin with. My children can make a huge mess from nothing. If it weren’t so frustrating, I’d be in awe of their abilities.. It’s almost like fusion…. Maybe scientists should study them) So I’d been ruthless and packed up winter stuff and extra stuff and  left all of us with a minimum of clothes: thus forcing me to stay on top of laundry and making it impossible to end up with a mountain(s) of laundry if/when we’re ready to show the house… See how incredibly wise I am?!?!? Stop laughing at me! I can totally see you…The 3 big kids and I were doing ok, but Riley was a different story. Someone gave him oatmeal-new outfit. Someone gave him cheese puffs- new outfit. Peanut butter was involved- new outfit. This outfit is what we were down to on Thursday: A too big sweater vest and too-long shorts! Trendsetter! (He’s crying because he wants my camera.)

I put Riley down for a nap in this lovely outfit. He was quiet for a while and then started fussing. This is par for the course, so I let him fuss. The fussing got more intense, so I went to check on him and calm him down (Mama was really desperate for a nap too).  Walked in his room to be greeted by a naked Riley… Mentally smacked myself upside the head for not learning the previous two times that if he’s wearing clothes that are easy to get off, he’ll take them off and his diaper too during naps… The previous two times hadn’t been a big deal. His diaper had only been wet and he didn’t do anything after the diaper was off (except scream). I went to get him and realized he had taken off a poopy diaper this time. And stepped in it, among other things (I’ll spare you the horrific details… You’re welcome)… An hour later I’d cleaned him up and bathed him,(all the while paranoid that he has made the connection that diapers off in crib = bath and baths = fun) then went to deal with the bedding. Guess what I forgot! No washing machine!!! The bedding wasn’t actually too bad, I’ve encountered worse from a blowout diaper. But still. For real?!?! Talk about timing! A short notice trip and a pooptastrophe all in the time frame of our washing machine dying… this is my life, folks!

We’re all in clean, properly fitting clothes now. All the bedding’s clean. We have a new washing machine, and I’m almost excited about doing laundry now! That’ll wear off quickly, I know!

And apparently I need to get out more if a new washing machine=fun…