In 2018 I began yearly appointments with a Rheumatologist after my mother was diagnosed with Inclusion Body Myositis. After blood work revealed a positive ANA, and a physical exam the Rheumatologist said, "You have a sleeping giant inside of your body, but I want you to go and live your life." I didn't argue — I lived my life. I never gave much thought to the giant. Every August I would return for my annual exam and bloodwork, and he'd repeat, "the giant still sleeps. Go and live your life." As I left last year's appointment he commented, "if you notice any funny rashes, don't hesitate to call me."
Returning home, I told Pat about the visit and he asked, "Did you tell him about the rash you get on your neck?" "Nope. I surely did not." I'd forgotten all about the odd, small rash that would appear without warning and just as quickly vanish. But, over the past year, the funny looking rash began to hang out longer and then took over more of my neck. I asked my primary care physician in April, and she suggested I take a photo of the rash and send it to the Rheumatologist. Rather than forget and move on, I snapped the photo and sent it asking for his opinion. His reply came within the hour – please come to see me tomorrow morning at 8am.
Awake and Aware
The appointment didn't last long. A few questions, an exam of my fingers, joints and neck led him to change his discourse. After counting four of seven markers for Lupus he confirmed the giant was no longer asleep. With every question my awareness also woke up.
Fatigue - oh, so I'm not just feeling unmotivated? Now I understood why my legs had begun having conversations with me: Kolleen! We are too tired to walk. Kolleen! Please, go sit down. My legs had never spoken to me like that! They seemed so defiant lately, putting up such a fight to move that when I did they retaliated with tremendous aching. The constant tingling in my hands, brain fog and muscle aches, mouth sores? Got it. Then he began to list the adjustments I'd need to make as I lived with this new condition.
Stay out of the sun. After the removal of melanoma a few years ago I have been cautious in the sun, but now he describes it as my enemy. Long sleeves, sunscreen and hats are non-negotiables, he says. Rest. No stress. Structure. Your body needs consistency and routine. I listened as he drew a box around me with clear boundary lines, thanked him and tried to process the information. Then, I went home to discuss with Pat, sat on my porch, did a little research on Lupus and cried.
Before I knew it, I was partying hard with pity. In fact, I spent a few days here. This was clearly not what I'd planned for this season of my life. Does anyone plan for illness? Does anyone appreciate a diagnosis that limits and restricts? Doubtful. I've watched disease steal time and opportunities from those I love. Dang. I've felt sad and sorry for them. Is it okay to feel sorry for me, too? Empathize, yes. Pity, no.
Alive and Activ8ed
As God would plan it, we'd be preparing the teaching theme for Activ8Her when I received this diagnosis – #restoretrust. Of course God would ask me to practice the art of trust; after all, who wants to listen to someone talk about what they haven't experienced. Am I right? Quote Scriptures? check. Harken you back to your identity in Christ? check. Words of encouragement? check. It's always been easy for me to tell others to trust God in the midst of heart-shaking, knees-knocking, lip-quivering moments, but what happens when trust is put to the test in your own life?
You do what Jesus did when he was put to the test. You walk through the wilderness and trust the Word within you as you make your way through to the other side. I recognize how extremely difficult it is for me to think good when I don't feel good. This required me to give those closest to me permission to quote Scriptures, harken me back to my identity in Christ, and listen when they offer words of encouragement. Check, check and check! Check your attitude, Kolleen and when it begins to descend into the negative listen to the hope from others. They are not offering simple platitudes. They are offering words of life.
I began to ponder the thought of finding a functional doctor (something I've never done before). When the thought would not leave me I consulted with a friend who led me to Dr. Alexa in Rochester. After my initial consultation with her I felt hopeful again. She said, "give me six months and you will feel better going out of 2023 than you did coming in." Six months.
Step one: bloodwork - oh my! The amount of blood work was amazing. What did she discover? High mold levels in my system, among other issues to contend with. Let's get to work.
Step two: detox. Time to detox and rid my system of mold. If only our healthcare system checked at a deeper level for the toxins perhaps we'd have less autoimmune disease and cancers. You know, the stuff that's killing us. That's for future conversations.
I am a few months in now and my-oh-my has it been difficult. Rarely do I feel well. There have been days when I've sat on the porch and simply listened to a book because it's too much to try to read it. As I write this, Pat and I are with two of our grands while their parents enjoy an anniversary trip. It was planned before I was told that if my body says, I can't then my response must be, I won't. I'm also learning to trust my body and heed its warning. Thank goodness for Papa's endless energy supply, but it's been tough to sit on the sidelines.
Spiritual Diagnosis and Detox
When discouragement feels oppressive I've been thankful when the reminder wafts through my mind like a gentle breeze, six months. This is a journey. A hard season – through. I become a bit more courageous with every verse of Scripture. One of my Pastors pointed me to a YouTube video of healing Scriptures. I listen to it every day. Ruminating on God's Word harkens be back to my identity in Christ and brings me the encouragement to walk this out. Jesus told his disciples a parable about a widow to "show them that they should always pray and not give up,"she's become an example to me (Luke 18:1, NIV). I also listen to the song, Gratitude by Brandon Lake every morning. I want to be grateful in this season.
I've noticed the deeper I dig in the Word of God the more diagnosing He does within my heart, too. Similar to Dr. Alexa who attacks sickness at the root, God's begun to attack issues of hurt and resentment I thought were long past. The enemy attacks when we've been weakened by defeat. And I surely felt shaken and defeated by disappointment early this year. I'd dropped my shield ( Ephesians 6:16). It's time to pick up the shield and press on.
So, here I am. I'm opening the door and inviting you in, not for sympathy (anymore), but rather to create community. Let's sit with a cup of coffee and chat about life and healing—of all types. Maybe you are on your own journey – through. Perhaps we can help one another stay in the positive lane when we feel parked by pain. And we might help one another keep our eyes and attention on Jesus.
As I learn to adjust to these unfamiliar conditions I want to make sure I "approach God’s throne of grace with confidence, so [I] may receive mercy and find grace to help [me] in [my] time of need" (Hebrews 4:12, NIV). Let's go —together.