On Wednesday I was at TJ Maxx looking for a pair of jeans. My arm cried out in pain as I slid a pair of jeans from one side of the rack to the other, as if I’d just lifted a 50 lb. dumbbell. Determined to at least try a pair on, I threw them into the cart and headed into the dressing rooms. Once inside I leaned against the wall to steady myself. Heat from within blasted me like fire from a blow torch. Chanting quietly, I sternly affirmed to myself, I will not pass out. I WILL NOT PASS OUT.
I waited it out breathing a sigh of relief when I could stand on my own. I put the jeans on and stepped up to the three-way mirror. “Hey, look at your hair,” my mind said, “it looks like straw.” Right. Thanks for that.
As I lifted my leg to get out of the jeans, pain, heat and dizziness began again. I needed to leave the store. Now.
Extreme fatigue and pain is what I press on through in normal daily life, but this level of weakness? My concern is growing.
On Thursday, one day later, I was at an appointment with a new specialist. “I’m not going to lie to you,” he said. “It’s serious.”
As terrible as those words were to hear, they were also a bit like the song of angels. Finally! Someone in the medical field was acknowledging what I’ve known for so long: There’s more to my health story than what’s been discovered.
The irony of intuitive gifts is that when something isn’t right, I know it. I carry unshakable unease, without being able to identify the problem. For those I love the most, my family, friends, dog, myself, the details are blanked out by emotional attachment.
For years I’ve been without a guide, someone knowledgeable in the field of “whatever it is that ails me.” Alone, these waters are treacherous. I’ve been hanging onto the boat for dear life, celebrating every time the waters calm, praying hard for a sign of land every time another storm begins. I’ve longed for a mentor versed in the language and science of the body, one who can hear its screams and still believe that it can be healed rather than “managed.”
“Your heart has been affected,” he said, “as well as your pancreas.”
I watched my mom’s eyes widen from across the room.
I like it when she comes with me to appointments because I don’t always retain what the practitioners tell me. Her eyes were acknowledging what I’d said to her a couple weeks prior. I’d been researching my microbiology test results online.
“Mom, I have a feeling this has to do with my pancreas,” I’d said. It keeps coming up around me, but I’m so tired. I can’t do any research on it, because I’m just not ready to accept more right now.”
On some level I already knew, but I wasn’t ready.
“You have trouble sleeping don’t you?” He asked, while checking my vitals.
“Right. I do not sleep well.”
“You have to eat every couple hours?”
“Yes,” I answered. “Or else my brain shuts down and I lose the ability to talk.”
“And your feet are cold?”
“My toes are numb.”
In the last couple weeks my toes had become uncomfortably numb with a purple cast. Six days before, it took over 25 minutes sitting inside an infrared sauna before they finally became warm. Not good.
It’s hard to remember exactly what he said in our appointment because icy chills began to ripple the length of my body, distracting me from his words. It wasn’t news to me that a lot of body systems were involved with an “Immunity Disorder” but his take on things was new, with an eerily accurate feel.
I quietly freak on new information before I can absorb it. The freaking had begun.
It was something about circulation, oxygen, the way my heart and pancreas have to work extra hard. Sleeping challenges my body because it’s basically fasting. Without food every 2 hours it struggles.
I thought of my nights. Lately, getting up to use the bathroom at night has been difficult. I feel trapped under my covers as my arms feebly attempt to lift them off me. When my arms are unsuccessful I wiggle my leg to the side seeking cool air, then use my leg plus a rolling maneuver to escape the weight of the comforter.
Staggering to the bathroom, my legs complain about the walk. The heat blast begins, taking over my whole body except my toes which remain stubborn to warmth. Dizzy, I stumble back to bed. My stomach grumbles with hunger so I drink the water I’ve purposely placed bedside so I can drown the middle-of-the-night feeling of starvation. When I lay back down, I stay outside the covers, sweating, and waiting for the strength to get back in.
I might fall back asleep within a half-hour, but only if I succeed in keeping my mind mushy throughout the trek. Otherwise, it’s wide awake, with bonus time to think about how much this sucks.
Blood sugar issues? Would you believe that my medical record doesn’t show as much as a small glucose issue? Yet, each year the window between how often I have to eat before I crash has been growing smaller. I remember when it was four hours, then three. In the past year I’ve dropped below three. I could be slowly dying, but my labs will “look good.”
I thought of the varicose veins now featured on my calves. Like cracks in the ice gaining speed, they’ve fanned out and spread. My legs are way too young to look this old! You could say that circulation is a problem.
As I listened to the specialist, things were coming together for me. His explanations matched my symptoms in a way that no one else ever had. And then he said it…
“Your symptoms are consistent with a bacterial infection like Lyme Disease.”
My memory flashed quickly to a bulls-eye ring rash that my ex- husband had on his chest once. He went to the doctor. They said it was nothing. Me? I don’t remember one.
“How long do you think you’ve had this infection?” the specialist asked. Based on severity of symptoms, we both did some calculations, settling at between 7-10 years.
“NOOOOOOOOOO,” I wanted to scream.
“Let’s not get attached that word as a label though,” he said, seeing the look on my face.
“In fact, we have a code number for what’s going on with you. We actually don’t use the word Lyme here. That word was for you to understand the seriousness of the bacterial infection in your nervous system and nature of what you’re dealing with.”
Giving the infection a code word was brilliant, I thought to myself.
What can a label do for— or do to— a chronically ill person? They validate. But if you hang out with them too long they can really mess with your head.
I already have a cluster of labels. The first, “Neurological Endocrine Immunity Disorder,” given to me, I believe, to somehow honor and differentiate the level of cognitive issues I experience. Then there’s “Chronic Fatigue Immune Dsyfunction Syndrome, Fibromyalgia, Adrenal Fatigue, PTSD,…” the list goes on.
The person cast into the role of The Autoimmune Warrior is likely to meet up with the cascade effect. Once one body system is overtaxed that can lead to another body system becoming overtaxed, so one label often leads to another.
But Lyme? Dear Lord, what I don’t need is another uphill battle, another medically-debated, often-discredited, only half-believed disease. Do I really have the mojo for this? The absolute last thing I need is a bacterial infection that requires treatment by annihilation. The medical weapon: A cannonball of fierce, gut destroying antibiotics.
My soul whispers to me that my immune system won’t survive the antibiotic plan. I am acutely aware that I have little defense against a cannonball. I tried that once and cheated death.
Eight years prior I almost died, my weight free-falling 17 pounds in two short weeks, landing below 100. One never forgets what it feels like when organs threaten to shut down while no medical cause reveals itself.
Was that the onset of this disease? I wonder. Could that go round with IV antibiotics have been enough to suppress the Lyme symptoms for a while?
Was this the proverbial catch 22? Because I was never the same again. My immune system didn’t recover. Back then, I didn’t know to take mega doses of probiotics to offset the flora damage. My health began it’s slow and steady decline.
I respect doctors and believe they choose their professions for the noble reason of helping others. A diagnosis can save life. But I’m not down with their little pills anymore. Through personal experience I’ve learned that while one manages the symptoms of chronic illness with synthetic drugs, the body gets torn down from the inside out. Medication may save me in catastrophic circumstances, but they aren’t going to heal me.
In contrast, as we left the alternative specialist’s office that day I had a healing plan, a way to support the body while it uses its innate God-given wisdom to heal. I’ve been telling myself that my body knows how to heal. I just haven’t found the key— the sacred code— that will unlock my healing door.
When I’d been inside the office listening to my new practitioner, he’d said to me, “Your body wants to heal. It’s got its own special code, a combination that will unlock the door to healing.”
Ding. Ding. Ding. We all know I watch for signs.
I left the office stunned, the beginning stages of grief settling in. There are so many of us living with autoimmune conditions, in fact, enough to be called The Autoimmune Epidemic and yet it’s still a long, lonely road.
To look at me, it’s hard to believe that I’m not just a whiner or hypochondriac. Because I’m naturally thin, I look pretty fit. When I use energy to put on make-up and curl my hair, not only do I look F.I.N.E, fine, I look healthy. On a good day I can still sound intelligent.
Driving home from the appointment Mom says to me, “Now, I hope you don’t get it in your head to go researching this like crazy.”
Who me? Go a little OCD on something? Turns out that’s one of the neurological symptoms of Lyme. I know this because I researched it. Chuckle.
Read more about that here.
What I heard Mom saying was, “You don’t need to learn more, just get your treatment and be okay.”
But, that’s not me.
As I drove home I was alternating between feelings of devastation and incredible gratitude, pretty certain that my Creator had just delivered me to the answers I’ve desperately called out for in my heart.
Once I did get online, I recalled all the times I came right up to Lyme in my prior research, read the symptoms, felt my gut churn and quick exited the site. Just like my pancreas symptoms, some part of me knew and didn’t want it to be true.
Yolanda Foster, a woman from Beverly Hills Housewives recently became the face of Lyme disease. Watching the show last season, I could tell she didn’t feel well. What’s her story? I wondered. Googling her name, I easily found her blog.
Although to me she seems to be the most loving and down-to-earth lady on the show, on her blog she was subjected to cruel judgments. Her thinning hair was the topic of criticism by those commenting anonymously. Come on people, have a little compassion.
The mean comments on her blog reminded me of the mean comments made by my own mind in the TJ Maxx dressing room. “Your hair looks like straw.”
I thought of the hairs I’m constantly finding clinging to my clothes, my car seat, my purse, my bedding and another chill of recognition went through me.
“Noooo,” I cried to myself, still protesting.
Then I found a video comment Yolanda made about watching herself on the show and witnessing her own struggle. She was challenged to participate in conversations, having difficulty verbally expressing her words. She said her mind was full of words— my mind is full of words. But neither of us can be certain we’ll get them out verbally if we need to. Her many neurological symptoms caused me to reflect on a post I wrote months ago in which I wondered if this is what autism feels like. Cold goose bumps ran down my arms again.
Full of all the information and sadness I could process for one night, I went to bed rippling with anxiety attacks, now understanding why I had strange sensations in my chest.
The next morning I was thinking about the brain limitations I work with. The variable, moving targets, are ever-present—a daily mental obstacle course.
If we are chatting, I cannot have the TV on, a phone ringing, music playing, noise outside, birds chirping loudly, or dog’s barking. Noises in the environment scramble my comprehension code. If you change topics quickly, or choose the wrong word for something, I lose track of you. If I manage to stay with you, it actually hurts.
One time, not long ago, I stepped up to the counter at Rubio’s to order lunch at the same time a boisterous woman stepped up beside me to order hers. As she bellowed out her order I became so discombobulated that I stood there staring at my order taker, unable to speak, unable to move, a visitor from the Twilight Zone.
Multi-tasking is something I once excelled at. Now it’s a story of days gone by. Four years ago my husband (ex) had a habit of talking to me while I was trying to pay for groceries. My brain would freeze up mid-process. Internally I’d get distressed, embarrassed to shut down in front of the Trader Joes clerk with a long line behind me. If my ex continued to talk to me I’d snap at him. He’d thereby get irritated with me or hurt, making me not only the jerk, but also the one who owed an apology. Once safely in the car, he’d try to get over his annoyance and I would cry, unable to explain what was happening inside.
Today I have a one track mind. Those who knew me during my Wonder Woman years are still adjusting to this. If I get interrupted while I’m writing, I struggle to find my path back to where I was in my brain. If I get interrupted when I’m talking I likely won’t remember what I was talking about. If I go off on a tangent—don’t expect me to circle around.
We’ve figured out only recently that I get a bit testy when being read aloud to. Whatever I can’t pace with starts to cause me mental discomfort.
Perhaps one of the most significant changes, a huge effect that’s been going on eight years now, is that after twenty-four years in the finance business doing numbers and reasoning work, my brain now hates everything about numbers. Calculations, details, paying bills, following instructions and tax preparation were super easy before. Today I’d call them torturous.
On rare occasions, the stars align and I gain brief access, a glimpse, into the part of my brain that, for all those working years, was exceptionally good at documenting files, knew how to create and work within systems, made sense of numbers, was extremely organized and high functioning. It’s only ever a glimpse of the former me that I get to enjoy, but I hold onto it dearly, reveling in the hope it offers.
As vulnerable as I already feel, I cannot imagine where I’d be in my life today if I wasn’t conditioned by my business background. Some of the behavior that carries me today is habitual, rather than a result of thought. I’ve got “taking care of business” grooves ground into my brain, from years of workaholism. My heart goes out to all those on disability who are navigating without a business background. May the force be with you.
The writing you’re reading today IS NOT EASY for me to produce! But, it’s a healing method I use to express in writing what I can’t always find the verbal words to say. Writing is a labor of love that gives me a reason to live. Thank you, God.
And, thank you for reading.
To read more about the neurological aspects of Lyme Disease visit this link: http://www.lymediseaseaction.org.uk/about-lyme/neurology-psychiatry/
To read what I’ve learned about healthy grieving and emotional healing, as well as the myths and healing of Lyme, please sign up to receive upcoming posts. I’m pooped right now, as I’m sure you can imagine, but there’s more to come.
Wishing you all peace and love. Thank you for reading!
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Disclosure: The errors likely to be contained within are also a symptom. Go easy on me.
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