Losing My Voice
By Sherry Duquet
RA Warrior, children’s author, yoga instructor
First RA, then throat pain
I thought the pain in my throat would eventually go away, but it didn’t.
The Strep test this time was negative and so were the two Covid tests. I had been given a second round of antibiotics followed by an anti-fungal, followed by a course of steroids for good measure. Still nothing changed the level of pain in my throat.
Having rheumatoid arthritis (RA) has made me intimately familiar with chronic pain.
It is the kind of constant pain that feels like it may never go away. The pain in my throat was just as relentless, just in a new and different place in my body. Unlike my hands or sternum, where I commonly have RA flares, throat pain feels more invasive, somehow more intimate.
The pain had begun and settled in the left side of my throat, making itself at home as an unwelcome intruder. It was ruthless and unwavering week after week. Every single swallow I have felt the cutting, slicing, raw feeling of an infected throat. My voice had become more strained, hoarse, and difficult to use.
Losing my voice feels unspeakable
I co-own a yoga studio and am a yoga instructor which requires me to be the only one talking in a room full of people that are silently awaiting my next instruction.
As my voice became hoarser it was difficult to project and teaching yoga became painful and emotionally draining.
I spend the other days of my week as a very talkative and outwardly expressive barista at Starbucks. Losing my voice would mean losing my ability to make a living, share my gifts (yoga), and retain my health insurance (Starbucks).
My general physician was stumped.
We had literally tried everything.
I messaged my rheumatologist through her portal.
Like most doctors, she has a gatekeeper, a member of her medical team through which all of her phone and email messages are filtered.
I addressed the note to my doctor and explained that I believed the pain in my throat could be RA related. I had heard of RA manifesting itself in the throat joints.
My rheumatologist had also just taken me off my biologic medication because in the previous 6 months I had been getting sick way too often. She said I was out of balance.
Even though my RA felt well controlled (abundant energy, ability to exercise and work) my immunosuppressant biologic medication was suppressing my immune system too successfully and I was getting sick more and more often.
In that 6-month window I had suffered through a scary bout of Covid, then several weeks of bronchitis that led to pneumonia. Then Influenza A found me, followed by Strep A. So, she took me off my RA medications. Three days later my throat began to hurt, the new, now unexplained sore throat.
Looking for help
To my disappointment, my rheumatologist’s gatekeeper was dismissive of my email and belittled my concern. She stated unequivocally in her response that my pain was not RA related. She then dressed me down by reminding me that my doctor had already suggested that if my throat continued to hurt that I should contact an immunologist.
The interaction made me feel small, sad and like no one would help rid me of the crippling sore throat that I had been living with for the past twenty days.
I made an appointment with an Ear Nose and Throat (ENT) specialist following what my GP had suggested in our last conversation. They specialized in throats, right?
Surely, they would be able to help me get to the bottom of this mystery malady. As I waited for my appointment, the pain in my throat never wavered.
Teaching yoga was agonizing which started to fracture my heart a little bit more with each class.
Sharing yoga with my students and community has always made me feel so full. It fills in the emotional cracks and crevices created by living with a degenerative and chronic illness.
When I am teaching, I feel whole.
When I am teaching, I am able to forget about the disappointment and fear of living with a disease that will never go away. Teaching yoga is healing for me.
ENT appointment day finally came. I was experiencing the conflicting emotions of desperately needing answers and being afraid of what she might say.
The ENT was empathetic, listened well and had an incredibly friendly staff. She asked me a dozen questions and examined my throat.
She said that she was certain she already knew what was going on but wanted to look inside my throat to confirm.
She took and long, slender tube with a camera and light on the end and threaded it into my nose and down my throat.
It was infinitely worse than I had hoped it would be then she did it again on the other side.
RA in my cricoarytenoid joints
She slid the camera snake out of my throat and nose then shook her head knowingly.
She explained that my rheumatoid arthritis was now manifesting in the cricoarytenoid joints in my throat.
The crico joints are two small joints between the crico and arytenoid cartilages in the back of your throat. They help open, close, and tighten the vocal cords when you are talking or breathing.
In order to treat this new painful situation, I would need to treat the underlying cause, which of course was my RA.
Yes, that makes perfect sense, but only three days prior to the onset of this sore throat mess I had been asked to stop taking my RA medication because as my rheumatologist described, I was “one more virus away from being hospitalized.”
My immunosuppressant was evidently too robust so she took me off my biologic for three months. Sitting in the ENT’s office now, we were nowhere near that three-month mark.
Although the ENT’s diagnosis was corroborating my initial suspicions, I somehow felt stunned.
How was it possible that my RA had found yet another way to pick me apart? How would this add to the destruction of all the things that bring me joy?
No RA meds, now what?
She suggested that since I was not supposed to go back on my RA meds for another two and a half months that she could give me two cortisone injections in my neck. It would help she said.
It felt like the worst idea in the entire world. When she left the room to get paperwork and the cortisone, I let my tears fall. I was really scared.
I signed a liability waiver releasing her office of any guilt should I have a stroke from the injections in my neck. Unlikely but not impossible.
She then started the process by finding the joint with her hand and pushed it up toward my jaw.
The pain was so unbearable that I could hardly breathe. All I could think of was that it must almost be over.
Then she said, "I’m going to insert the needle now.” Oh my god what? You haven’t even done it yet and it hurts this bad?
She inserted the needle and injected the searing liquid into my neck twice, and then it was over. I handed my credit card to the receptionist and made a three week follow up appointment with yet another specialist to add to my contact list.
Feeling big emotions
I got in the passenger seat of our Honda and began to sob.
Big heaving sobs filled with fear and pain.
My spouse Sandy and our canine daughter Vivian were waiting for me in the car.
She stared at me and I managed to croak out, “Can we please leave?”
She threw it in reverse and began to drive. The streets were heaving with people and cars. What is going on?
It’s the middle of the day on a Thursday? And then I saw them, there were Tampa Bay Rays shirts everywhere.
The baseball game had ended and Tropicana Stadium released tens of thousands of fans into the streets of downtown St. Petersburg where our Honda, filled with sadness and tears was at a standstill.
As we made our way through the streets of downtown, the pain began to multiply rapidly.
I could hardly swallow which was making it difficult to breathe. Somethings wrong I said.
I don’t know what’s happening but this can’t be right, the pain is unbearable.
We tried to call the office but could not get through so Sandy turned the Honda around and we began the slow trek back to her office through the throngs of baseball fans crowding the streets.
I urgently walked back into their waiting room; they were surprised to see me. It was nearly impossible to describe to them what was going on without becoming completely hysterical.
The pain was overwhelming me. My new doctor had already left the building.
They called her on the phone and she asked to speak to me. Then she turned her car around and made her way through the baseball fans back to her office where I sat in her waiting room, trying to stay calm.
Once more she threaded the camera snake through my nose and down my throat. I was having a cortisone flare which can create intense pain at the injection site which can be even worse than the original pain. Unlikely but not impossible.
What RA is taking away
She gave me an ice pack, a prescription for Oxycodone and sent me on my way.
I thanked them for their quick and caring response then poured myself into the passenger seat of the Honda. Please Sandy, please take me home.
And that is where I have stayed for the past two days, in my pajamas with Vivian and a constant stream of Hallmark Movies.
Turns out the most painful and traumatic injections I have ever received did not lessen my throat pain by even a little bit.
I am told that it may take up to a week for the cortisone to kick in so I am willing to remain cautiously optimistic. I am trying not to pre-fret about what this new iteration of my RA may or may not mean. It is still difficult to eat because swallowing is so painful.
Talking is also still painful so I have temporarily found subs for my yoga classes and co-workers to fill in for me at Starbucks.
Fears I have
The thought of not being able to share yoga again makes my heart hurt and feel empty.
Wondering if I will have to leave the job that provides the amazing insurance that I clearly need makes me feel desperate and afraid.
Not being able to talk to my friends or my sister on the phone makes me feel alone.
Each time a new area of my body is overtaken by the might of an RA flare, I feel like a part of me is lost.
This time I have lost my voice and I’m not sure yet how to get it back.
Needing RA community support
As I sat here in my jammies with Vivian and the Hallmark channel, I began to wonder how many other RA Warriors were out there feeling alone or desperate or afraid like I was?
Had anyone else ever had a terrifying flare in their Cricoarytenoids? Had anyone else ever lived through an excruciating cortisone injection that did not produce any pain-relieving results?
Then it occurred to me that if I reached out to my warrior community, if I wrote about what was happening then wouldn’t that actually be finding and using my voice again?
And if I got my voice back and could communicate at least in writing without pain, then that would mean that Rheumatoid Arthritis had not won. RA had not stolen my voice at least not entirely and today, that small victory feels like enough.