Facing the Pain
Learning to Refocus and Redirect
The diagnosis came.
In May of 2019, on my left side my tongue and lips started to become tingly. I thought I ate something I was allergic to. A couple days later, it had not gotten any better — in fact it was worse. The doctor got me in right away. Initially, they thought I had the first signs of shingles. The chickenpox virus (Zoster Virus) that laid dormant in my system was raring up for a fight. After days of super strength antibiotics and feeling miserable, the pain had spread–knocking in my temple, the left side of my face felt like I was shot up with Novocaine. I burned and tingled. The roof of my mouth and back of my throat was numb. My teeth felt like they had rotted and exposed the root nerves. It was excruciating to put on makeup. Each brush of an applicator on my skin felt like sandpaper. When my hair brush slid over the left side of my scalp, I felt the pressure but dull and weird. How can I feel numb but intense pain at the same time?
I was referred to a neurologist and after monkey tricks like testing my balance, wiggling my tongue, smiling, running a needle over my skin, he called for blood tests and an MRI. Every time I received a health care portal result my heart raced – I’m sure I’m dying. Every blood test came back within normal ranges.
After a whole 7 days, that felt like eternity, the MRI results were back. My brain showed no signs of mass or possible stroke. I have a “great looking brain.” That’s wonderful news; however, I show an atrophy on the left side of my Trigeminal Nerve before it branches into 3 parts. For some unknown reason, the myelin sheath (insulating layer around the nerve that allows electrical impulses to the brain) has shrunk and is squeezing the nerve that runs all three branches on the left side of my face.
I have Trigeminal Neuralgia.
I was diagnosed with Trigeminal Neuralgia-Type 2 (TN2). Highly debated, this rare nervous disorder has fewer than 200,000 US cases per year. It is known as one of the most painful afflictions in medical practice affecting women more then men and ‘typically’ people over 50 years old.
The difference between Type 1 and Type 2 is TN1 tends to have sporadic sudden burning, shooting pain like electrical shocks and TN2 is more of a constant, dull aching or burning.
I don’t know what classifies pain as “dull”, but mine is anything but dull. There are speculated causes—a blood vessel or mass strangling the nerve, yet no definitive treatment, and no DEFINITE cure. I read all about it while I was Google-ing my symptoms. (You can laugh. You know you do it too.) I though for sure, “no way – not me, impossible, too rare, I don’t fit the ‘typical’ mold.”
I cried and wallowed in sorrow when I read the results. There is nothing. NOTHING! that can be done to cure me. NOTHING can be done to fix this. I had 5 more days to wait to see the neurologist again for a plan of attack.
I hate this body I live in. From the high functioning depression, to extreme anxiety that makes my body physically sick, to now this! This is NOT now how I planned to live my days – in constant, sometimes debilitating pain. I have a household to manage, a child to take care of, a business to run, my customers to serve, my work team to take care of, part of my community’s HOA.
I was working hard at two jobs to build my baking business and clientele. I work full time for steady income and was working night hours to grow something for myself. I wanted to start my own bakery, doing want I love, bringing people a “taste” of happiness and creating for the rest of my days.
God has other plans.
The only thing that can be done is to cut my stress levels, take anticonvulsant medication used to block nerve firing and antidepressants to manage pain. Swallowing 600mg of Gabapentin every 5 hours, I became unsteady, my brain was foggy, I struggled with my fine motor skills.
Welp! There goes my business. No more decorating cookies. I can’t even hold a spoon without shaking. I had to cancel orders and take a hiatus. My heart was broken — I lost my function to do what I really enjoyed. Why had God blessed me with this? Why did He take my skill away from me? The only one that can give me answers and help me is God.
I began praying for him to talk to me, waiting for thunder or a whisper in the wind. “Give me something, God,” I thought to myself.
A couple months went by since the diagnosis, 60 days of pain, trying everything: medicine, heating pads, warm showers, not wearing makeup, not creating to try to get rest, sleeping, and praying all to make myself physically feel better. Only my close friends and family knew what was going on. My baking clients just knew I was taking a medical sabbatical.
I took a vacation with my husband and son to see my in-laws. While on vacation, I still was very sleepy from upping the dose of Gabapentin. I would lay in bed and dwell on my new normal. Dread hit me like a ton of bricks. I don’t want to be like this the rest of my life. I’m going to be like this forever. There’s no end. I prayed to God, “Jesus, help me. Talk to me. I don’t want to live like this. I hurt. And medicine multiple times every day. Please……give me something.”
Something came a week later when I was on the phone with my best friend, Jess. “Jess,” I said. ” I lost my joy. I don’t know what I need to do but I need to change. I have a stirring feeling to redecorate my house, maybe we just need to move, change my space, change my habits…something.” However stupid that sounds now, she gets me. You really need to have those people in your life that speak out of love and just get you. I am very fortunate for my Jess. That was my first undeniable gut feeling for change.
A couple days after that I was talking with my boss, my friend. I am fortunate to work for a friend I have known for 18 years. She asked how my vacation went and how I was feeling. “I’m pretty low to be honest. I don’t know what I am supposed to be doing. Something is stirring, but I can’t tell where I am supposed to be. I don’t feel that I can be as detailed and creative as I used to be. I keep praying, but I hear nothing. I feel nothing.” “Let me tell you a little story,” she says. She began to tell me how she was having a really tough time in her career. She was praying constantly, almost every moment of every day, for an answer —was she was supposed to give up on her own business. She said 3 or 4 times, at different random places, people said to her, “You just gotta stick with it.” It finally hit her! Boom! Light switch! She said that was God speaking to her. “My point is,” she continued, “you have to start paying attention to the world around you. God’s not always gonna talk to you when you have the time or you think you’re ready.” That was my second gut check- her words pierced my heart.
Four days later, I was sitting in a church pew waiting for service to begin. A couple I had known for a long time came in to sit in front of me. You know, we all have our unspoken assigned seats in church. He began talking to another person about Joy vs. Happiness. My ears perked up. “You’ve got to be kidding me,” I thought, “the most practical place to hear from God–in church.” I text Jess in the middle of service. I told her what I heard and she rejoiced with me. After the message, I walked up to the couple and asked for a hand out that they had on the study. After explaining a little about my situation they directed me to a counselor that had been able to help with their daughter tremendously.
“Doctors, medicine, counselors….really?” All I want to just live and be me. What I didn’t realize then, is God is working on changing me from the inside out. He is calling me and making me seek him.
After a few days of hem and hawing over the idea—not wanting to let my vulnerability show, to even a counselor, I decided I best see if someone else can give me ideas, scripture, places to look, something to consider. I saw….. the counselor.
“Be completely humble and gentle; be patient, bearing with one another in love.”— Ephesians 4:1
The first thing I have learned is that joy comes from God. That was a hard pill to swallow, even harder then the two capsules multiple times a day. I couldn’t figure out how, when physical pain was all I felt, to have joy and give my circumstances over to God. It is true my eternal hope is in Jesus Christ, but how do I feel better now and endure? Yes, the ultimate goal is pure bliss beyond understanding in heaven, but it’s so darn hard now! We’ll get into this subject on another blog post.
Time to refocus – learning about my needs.
I have learned more about self care now than I have in my entire life. It’s not massages and pedicures. It’s about taking time for nothing and enjoying it. WHAT?!?! Yes, I said do nothing. I filled every minute of every day with something. I didn’t take the time just to rest, not think about work, or dead lines, pressures, and appointments. I needed to give my brain and body rest with no guilt that I wasn’t accomplishing a “task.” My task is to take care of me and putting me first.
I learned to forgive myself. Even though I thought I had forgiven myself of sins in my life, I still carried the weight of them in my invisible backpack. I allowed them to have a foothold on my soul. Thoughts of, “I’m being punished by this disease. I’ve made too many mistakes. I don’t deserve to be healed,” kept creeping their way in my brain. I learned to let go and let God. If he can forgive me and put it as far as the East from the West, then I need to turn it loose and let it go. (Notice I didn’t say forget. We’ll tackle that another day.)
I learned the word, “No.” I had to start telling people No. I need rest. I need sleep. I need time with my husband and child. I need to be creative. I need time for me to do what I want. I need a unscheduled day to clean out my sock drawer or take a nap. I don’t have to clean the entire house, grocery shop, do laundry, bake a cake and have a baby all at the same time. It’s way to overwhelming and I have done it to myself. I am a task master. Give me my check list and watch me go. My need for physical and mental relaxation are just as important as everyone else’s.
There has been a lot of soul searching and conviction in the past few months, but I am on my journey to a better place. I am not pain free, but I am learning not to look inside myself or someone else for the answers, but to God for guidance. My blessing with TN2 may cause me daily physical pain, but I have since learned that my spiritual, emotional, and mental health all needed fixed. I need to feed myself and I hope my journey convinces you that you do too.
The story of the Starving Baker made me realize that was who I whole heartily was. Outwardly focused when inwardly wasting away.
Are we in the same boat? Do you ever feel that way? Leave me a comment and let me know your struggles. Let’s feed ourselves…