My Spine, My Immune System, and Other Uncooperative Things

A few years ago, I started experiencing a wide array of seemingly random symptoms.

Exhaustion. Muscle fatigue. Irritability. My back seizing up. Joints clicking and aching with every movement. A sudden increased sensitivity to temperature. Cold sweats. Weight gain. A nearly invisible but highly irritating rash spreading across my jawline and down my neck in response to stress.

Having recently lost my primary care doctor, I made an introductory appointment with a new one. After explaining my symptoms and how suddenly they had begun to pile up, I waited, hopeful for at least the start of an explanation.

I did not get one.

Instead, she pointedly addressed my weight gain (which I had already mentioned as a concern), and then said truly the most bizarre thing I have ever heard from a medical professional, before or since:

This has now become an ongoing joke as a solution for all of life’s problems. Have you tried sleeping in the basement?

I left seething, feeling ignored, bewildered, and exhausted.

And I continued to deteriorate.

Stressful days were followed by pain-riddled ones, my body so sore that I expected to be covered in a head-to-toe bruise whenever I looked in the mirror. My limbs were heavy. I walked around like a zombie, physically unable to do activities that had once come easily to me, lying on the kitchen floor in a heap after carrying two bags of groceries up the stairs.

Thankfully, I am nothing if not persistent even on my worst days, and I made an appointment with a new doctor. She was much better, taking notes and immediately ordering labs.

… Which came back mostly normal.

There was one immediately noticeable issue: my inflammation levels were three times what is considered normal. It would explain a lot of the symptoms, but the nonspecific inflammation marker is just that – nonspecific – and so it didn’t explain what (or why) was inflamed in the first place.

And so I was referred to a specialist.

I don’t know if y’all have ever needed an evaluation with a rheumatologist, but it is not an easy appointment to obtain. Every available evaluation was months away, miles away, or both. So I scheduled one a few months out, and dissolved into a puddle under the weight of my continuously rioting body.

As the months went on, my work related anxiety grew and spilled over. Stress lead to symptoms, which lead to more stress, which lead to more symptoms. It was a vicious cycle that I couldn’t seem to find any other origin for. I did food diaries to see if I was allergic to anything. I slept more, I slept less. There seemed to be no rhyme or reason.

I started having difficulty standing upright for any length of time. It felt like my hipbones were connected by an ever-shrinking rubber band, weakening my legs and making my spine ache.

my hips don’t lie. they are suffering.

Finally, the day of my evaluation arrived, and I felt… totally fine.

Or at least I thought I did.

The initial questionnaire made me feel like I had absolutely no business being there. Can you get dressed on your own? Yes. Can you get in and out of a vehicle unassisted? Yes. Can you lift a glass of water, walk on flat ground, tie your own shoes? Yes, yes, yes. Can you get out of bed? … Usually.

There are pain scales, and symptom checklists, and that’s before the doctor even enters the room. Then there’s stretching and bending and twisting and a game of 20 questions where all the answers are related to your misery.

And then the game changing-moment arrived. Remember how I said I felt fine?

(Narrator Voice): She was not fine.

I got approximately one million X-Rays of my knees, wrists, ankles, and spine. Even more bloodwork. And then came the MRI.

Did you know that you are no longer allowed to wear leggings in MRIs because so many of them now contain metal fibers (that will definitely burn you alive)? I would like to formally request that no metal fibers be involved in underwear ever, because if I have to sit in nothing but an extremely well-worn cloth sack for upwards of two hours total, I would like to at least have some underwear on.

After what felt like an eternity of waiting (little did I know) I was lead into a dimly lit room and laid out on the cot that slides into the machine.

“This will take about twenty to thirty minutes,” said the very nice but very incorrect tech, as she set about getting my limbs positioned.

Apparently, the “optimal” angle for low-spine/pelvic imaging involves all of your toes touching while you are flat on your back, your heels separated with a thick foam roller. They popped on some enormous headphones, rolled me into the extremely claustrophobic tube, and as the machine began to make the Loudest Sound Known to Man, music began trickling into my ears.

First up was a new Taylor Swift song, which initiated a false sense of security. Next up was the exact same song, but a remix. Third was the same song, but the original version once more. Then an obscure 80s rock song with no identifiable words. And then (you guessed it) the Taylor Swift remix again.

It didn’t help that the audio sounded as though it was coming to me from nine hundred years in the past. Instead of a CD or digital release, this three-song playlist was piped directly from the bottom of a half-opened can of LaCroix.

I was in the machine for an hour and twenty-five minutes.

Upon emerging, I discovered that I could not walk properly. Having your toes taped together for nearly an hour and a half will apparently do that to you. I hobbled down the hallway like one of those wheeled puppies on a rope leash that 90s children got for Christmas; my feet were useless and my bones were nowhere near properly placed within my body.

you remember Pound Puppies, right? well, you’re welcome for this visual nightmare.

When I finally re-dressed and toddled my way out into the parking lot, it was to find that it was completely empty except for my vehicle. My mom sat in darkness in the passenger seat, having come along for the ride under the assumption that I would be in and out in half an hour and we could go to Target. Except that it was now clearly 3am and we were in another dimension in which we were the only two people left alive and my legs had still not regained full function.

The results came back rather quickly. Turns out I’ve got an autoimmune disease that is specifically attacking my spine. But do you know what your spine is connected to? Basically everything. So that’s fun. It is also quite likely that I have fibromyalgia, but we’ll burn that bridge when we get there.

On a scale of 1-10, how is your luck? Mine is “get diagnosed with an autoimmune disease like 8 minutes before the onset of a worldwide pandemic”.

I went from having one (1) doctor’s appointment a year to having an additional three to four, plus bloodwork every 6 months, plus a dermatologist because I also started having a histamine reaction to the sun.

as another little bonus, all but my first visit with my rheumatologist have been virtual, since the world began ending immediately after it

And yet somehow, this was a relief, because it was an answer to a bigger and more troubling question: Was I okay? Ultimately, yes.

Also, knowing what my body could and couldn’t handle, and what I could and couldn’t control in response to it was life-altering. I make time to stretch and relax and de-stress because if I don’t, my body will make me do it anyway on its own terms. And when I find that the hostility and mounting strain of my work environment causes me to break out in (now extremely visible) hives across my entire throat and torso at the sight of a name and sound of a instant message notification? I change direction.

Tuesday was my last day. And Wednesday morning, for the first time in a long time, I woke up pain-free.

I am also COMPLETELY unmoored. I have no idea what I’m doing. But I’m happy about it.


3 thoughts on “My Spine, My Immune System, and Other Uncooperative Things

  1. I totally get what you mean about at least knowing what’s going on with your body! It’s so frustrating not to know and there’s nothing you can DO until you know! Anyway I’m glad to hear you already feel the healing effects of being removed from the toxicity of our workplace xoxoxo

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