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


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