© Justine Rae
© Justine Rae

After I received my test results indicating that I have Lyme disease I experienced a shift in consciousness that lasted a few days. Finally, an answer for the multitude of health problems I’ve experienced over the last four years, and something to call my illness other than “No, I’m still feeling really sick”. My announcement to the world that I have Lyme disease resounded with the thud of a single pine needle landing in a dense forest. Did you hear it?

Here’s the deal. Most people don’t know what Lyme disease is or even how to pronounce it. Some folks have heard of it and nod sympathetically. Some respond with silence like the person who does not yet know grief when you tell them your loved one died. There are questions, including, What is the treatment? What are you taking right now? Is there a treatment? One well intending relative sent me a web link warning that antibiotics don’t help with Lyme. No, How are you,? I’m sorry to hear…

Welcome to Lyme purgatory. It’s the period right after you’re diagnosed. Most likely you’ve been sick for a long time. You may have lost your ability to perform your livelihood. Your Lyme diagnosis is a doorway into a parallel universe where things will never look the same again. First you learn that Lyme has a group of diehard codependents who are invading your body and doing as much damage as the Lyme. Keep drilling down and you may find that you have systemic candida and a host of other problems associated with the fact that you have been ill for an extended period of time. The body is a web, just like life, and each twitch on the silky string affects the entire web.

As you go along, the Lyme plot thickens. My adrenals are like a couple of goat nuts that have been dredged in flour and left in the deep fryer for too long. I’ve learned some things about adrenals that will fundamentally change how I live my life forever. There are treatments for crisply fried adrenals. But the most important treatment is learning how to live in a way that doesn’t make your adrenals rapidly fire over and over. Now I understand just how many things I can no longer afford. For instance, mainlining sugar instead of eating meals. While I was still working I remained upright by living on Vicodin, Starbucks drinks, sugar and 16 oz bottles of coca cola.

I’m one of the original Achievers . I learned how to be teachers pet in first grade. After that achievement became my life’s guiding force. After high school I became a nurse after graduating with a 4.0 + GPA. I thrived on crisis and deadlines. To add to the mix I cultivated heartbreak and emotional drama by engaging in toxic relationships. Love and heartbreak are deviantly thrilling roller coaster rides. I took up running and for about nine years ran three to six miles three days a week. After being a nurse I became a graphic designer and worked in television. More deadlines, working all night, and unrelenting pressure. After 13 years of that I went back to school and earned an undergraduate in Psychology (GPA 4.12) and then a masters in Social Work (magna cum laude). Along the way I birthed a baby in a birthing center in the desert in Taos, New Mexico, without any pain medication.

push, push, push

And then my father died. And I cleaned out his house while wailing in grief wondering how it was possible that I could continue living without him. And then I started moving across the country. New Mexico to Washington. Washington to Oregon. Back to New Mexico, and finally to California where I accepted my first job as a therapist in an assembly line masquerading as a health care organization. Initially I thrived (their favorite buzzword) on the constant pressure to see more patients, to squeeze as much as possible out of yourself on a day-to-day basis, to work 10 to 12 hours a day whether paid or not. Go, go go, push push push. I tried to be more efficient even as I began to lose the ability to be so. The pain began. I switched work clinic locations to get away from a manager who had begun targeting me for my outspokenness about the system and its treatment of patients. I ended up in a clinic that was truly the underbelly of the organization, even though I had thought things couldn’t get any worse. My body was failing me. I sat with patients while in severe pain and with brain on fire migraines while trying to be attentive and compassionate. That’s when the Vicodin, Starbucks, sugar, Coca-cola cycle started. Push, push, push. I rushed around everywhere, and was always late. Usually I was late because even if I started out on time I would try to squeeze one more task into the space I had. It was only this last year I realized that this behavior was producing an adrenaline rush similar to what I received from the other stimulants I put in my body. I started feeling all the time that something really bad was going to happen at any moment, and it would be due to my burgeoning incompetence.

I tried to force my body to heal. My shoulder was the first thing to go and I would twist it in all different contortions trying to get it to go back into its former position. I was pissed at my body for failing me and I threw it around like a helpless abused dog. My scapula eventually slid down my back and became fixated, leaving the task of holding up my neck to whatever functioning muscles remained. Those muscles began to give out too, leaving me with no way to alleviate pain unless I was lying flat on my back.

I spent exhaustive hours on the internet trying to find out what was wrong with me. The HMO doctors were either dismissive or abusive, so I started seeking help from other well-respected medical institutions. There were MRIs, CAT scans, the whole nine yards. I wanted them to fix me. I was willing to do anything, just to have somebody cut my pain out and make me whole again. I had two surgeries that did not help and created another host of symptoms. I came close to suicide three times and would possibly have gone through with them if I didn’t have medical marijuana to provide relief from pain and from the mental anguish of battling daily pain. Before I was diagnosed with Lyme disease I blamed myself for my symptoms, sure that I had caused them by living in such a stressful adrenal draining kind of way.

On the first visit my Lyme Doctor said, Let’s get rid of the cure word, now. That’s a lie the medical profession has been selling for a long time now. I was not dismayed by her words. After four years of chasing a cure, I was ready for something different.

But just a couple of weeks after my diagnosis I was having a series of really bad days. Days when I would be surprised to see my reflection in the mirror because of how dead I felt inside. The weakness, the tired/ wired, the lack of ability to get anything done without having to take frequent rests, and the lack of ability to do some things at all. The lack of being able to string a cohesive thought together or accomplish a simple task like laundry. The buzzing in my brain and the sensitivity to noise that made the canned laughter on my son’s TV shows sound like jagged raw razor blades tearing through my skull. The feeling that my muscles are being torn from the bone. The unpredictable irritability and the sensation that I am breathing fire. The kind of things that cause my pre-pubescent son to say, You’re always sick, when I am begging him for some compassion.

I began developing these bright red blotchy lines on different parts of my body. I had my partner take pictures of them. I looked them up on the internet. Just one more symptom of one of Lyme’s evil step sisters, Bartonella. Even though I was already diagnosed with Lyme, I found myself surprised that I had these marks. My mind had gone back to thinking, What the hell is wrong with me?

A few days later I was talking with my partner on the phone and venting about how I was feeling and a million other things. I told her about how I’d gotten up that morning with so much pain in my right scapula that I felt like a one-sided Hunchback of Notre Dame. I took a bath and as soon as I got into it the pain switched to the left side. This is classic Lyme, by the way, the pain migrating around your body. My left hip is severely affected now too, extending all the way down to my left foot. I told her I was once again feeling like, What’s wrong with me???

She said, Do you want me to tell you what’s wrong with you?

Yes!, I said

You have Lyme’s disease, she said.

I didn’t correct her pronunciation.

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3 thoughts on “What I’ve learned so far

  1. I’m so sorry for all you have been through. I’m a fellow Spoonie, so I can relate to it well. Still, I am sorry for your suffering. Because you shared this, I will be checking in on my family member with Lyme. Thought I would tell you. Soft hugs.

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