Crisis or Chrysalis?

December was an emotional month at my house, and not just because we celebrate a birthday, four holidays, and our anniversary, or because my beloved Detroit Lions made it to the playoffs—don’t get me started on that awful game.

For a few weeks, I’d been feeling less energetic, more achy, kind of generally crappy—the usual cycling of autoimmune symptoms that I’ve unfortunately dealt with for nearly a decade. In late November, I had lab work and a routine ultrasound of my thyroid to ensure nothing crazy was happening because of my history of nodules. When the technician was doing the scan, I knew I would get a phone call. She kept taking extra snapshots of one area, which I’d noticed felt a bit odd too. Been there, done this.

So tired cat eyes

The Monday after Thanksgiving, the doctor’s office called as expected. But I was completely caught off guard by the tone in the MA’s voice. He had already scheduled a consultation with the Ear, Nose, and Throat doctor for Friday, to determine if I needed a biopsy because the nodules had doubled in size and changed in composition. (Last time I waited weeks to see the ENT and several more weeks for the FNA biopsy, only to have the entire thing turn out to be a false alarm.) Honestly, I was pretty freaked out. I called a friend I knew would let me cry for about 5 minutes and then tell me to stop borrowing trouble. (Thank you P.)

On Friday, the ENT avoided looking me in the eye. He is really sweet, but it was obvious he thought something scary was going on. He had his scheduler get me in to the FNA specialist asap. She called me the same day to give me the new appointment details. I honestly freaked out again, in 5 minute waves, but holiday stuff kept me busy most of the time so I tried not to think about the “what ifs”.

The following Wednesday, I went in for the FNA biopsy. Fine needle aspiration biopsy is done by removing tissue from your thyroid with a needle, assisted by an ultrasound for precision. The doctor numbed the area, similar to the dentist, and went to work sticking me repeatedly. He took nine samples, which mostly felt like a pressure in and out, until during the last sample when the anesthetic started wearing off a little and then it just felt…creepy. The doctor smiled throughout the procedure, which was also a little creepy. I kept imagining he was some kind of weirdo basement torture guy—the curse of a writer’s imagination.

Immediately after the biopsy appointment, I happened to have my regular yearly exam at my family doctor. What the heck, I was going to be out anyway, so I kept it. NO. Just NO. If you’re going to have a FNA biopsy, go home and rest afterward. Also, believe them when they tell you to use ibuprofen and ice.

My name is invisible patient

At the yearly exam appointment, the cranky, in pain version of me was not amused to sit through questions like “do you have any thyroid issues?” (hello? bandaged neck here?) and “do you have implants?” (Ok, that question was amusing). By the time I got home, I looked like I had either been attacked by a vampire or my husband had covered my neck in hickeys. Either way, in addition to my purple hair, my black and blue neck made grocery shopping and library visits over the next week…interesting.

The tissue samples were sent to a lab on the east coast for expert analysis, and all I could do was wait a week until the ENT gave me the results. That was when I really freaked out. Not in a hyperventilating kind of way, but in a “what-the-hell-I’ve-been-eating-right-and-this-still-happened-so-I’m-going-to-eat-everything-crappy-and-lay-on-the-couch-watching-classic-movies” way. Deep down I felt there was nothing new wrong with me, just the same old Hashimoto’s autoimmune stuff. I wanted to believe the wise part of myself who knew this to be true, but another part of me was terrified. What if it was cancer? How would my kids and husband deal with that? Let’s just say it was a very long week.

Thankfully, my inner crone was right. It was Hashimoto’s goiter nodules, not cancer. This is great news, right? Yes and no. Thyroid cancer has research and successful options for treatment in 99% of cases. Hashimoto’s is so variable and widespread that there is no end in sight. It’s mostly up to the patient to research and manage symptoms. The ENT shrugged his shoulders, like every other medical professional has, and announced it was something that I would just have to deal with. Same old, same old.

My initial reaction? Of course, I am thankful that it’s not cancer. But I am also WAY BEYOND OVER the lack of answers and empathy regarding autoimmune conditions. It is stressful—for me and those closest to me—to feel unpredictably sick indefinitely. Try planning something, anything, when you never know whether you will wake up in so much pain that the thought of being pelted by the shower makes you weep and merely typing hurts. It’s not all in your head. You’re not on a fad diet. You’re on a survival mission. There are plenty of online support groups—one has nearly 20,000 members—but sometimes those can be overwhelming. The worst part—as anyone with autoimmune issues can attest—is feeling marginalized, misunderstood, dismissed, or invisible. Believe me, every one of us would testify before Congress to demand properly labeled, safe food and real funding for better research if we could manage our symptoms enough to show up on the same day. But I seriously digress…

enthusiasm

My next reaction? I am super-duper done waiting for a concrete cure. I am back to eating allergy-free, taking handfuls of vitamins besides my thyroid med, exercising to feel good, staying hydrated and fiercely protecting my sleep hours. I am enthusiastically loving my husband and kids, and actively seeking opportunities to laugh. I’ve got a pretty good balance going and I feel 98% ok.

I have “fatigue days” and “achy days”, but they are getting less and less because I am steadily learning how to self-nurture and listen to my body. This latest health scare put everything into perspective once again. I am here to THRIVE, not just manage.

As I mentioned in my last blog post, something else happened during that week of not knowing. The Recollection of Trees was on track to go to the printer, but I hadn’t sent it yet. I had struggled writing the ending for months, and it had left me unsettled. Somewhere between the cheeseburgers, movie bingeing, and self-pity, I had an honest to goodness epiphany that led to a rewrite of the ending.

The ultimate truth is we are always in a week of not knowing. Not knowing isn’t even the point. Being present, in this moment, in gratitude and wonder and curiosity, that is the point.

You know what else? The thyroid is shaped like a butterfly.

What looked and felt like crisis, was really my emergence from an outgrown chrysalis.

Here’s to a year of wonder!

Crisis-Chrysalis

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2 thoughts on “Crisis or Chrysalis?

  1. My friend sent me this link to read. I’m suffering from lyme disease, and what you write about not being able to plan, and feeling marginalized…I get it. I wish I didn’t, but I do.

    As for purple hair..when I first started feeling crappy, I dyed the bottom half of my hair pink. Kept it up for two years until I couldn’t keep it up. I miss it, and am glad I did it.

    • Thank you so much Lori. One of the greatest compliments a writer can receive is “Me too.” You just made my day!
      I am so sorry to hear that you’ve been dealing with Lyme disease, but glad to hear you’re a rebel too. 🙂

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