Cricoary­tenoid RA

Rheumatoid Arthritis Warrior is doing a series about so-called “complications” of RA that aren’t actually “complications” at all.  Yesterday’s and today’s posts are about cricoarytenoid RA.  I’m in shock.

I’m thinking back to before my diagnosis.  My PCP tested and found nothing wrong with my thyroid.  I had a referral to a rheumatologist and assumed that everything was interconnected, so never phoned my PCP to say, “I’m having trouble breathing.  What’s the next step?”  I remember the end of my initial appointment with the rheumatologist.  A four hour appointment and he never touched on the issue that was most distressing.  I’m okay with going through ibuprofen and acetaminophen like they are candy.  I’m not okay with it being difficult to breathe!  He was focussed on my hips and feet, and I implored him, “What about my throat and neck?”  After waiting months to see the rheumatologist he said I’d have to see someone else about that problem.  I was crushed.

There was obviously something wrong, so back I went to my PCP.  He sent me for a thyroid ultrasound which did nothing other than confirm that the TFT’s were right and my thyroid looked okay.  He referred me to an endocrinologist for a second opinion.  Still no answers.

In the time it took to get all those other appointments, the swelling in my throat went down.  I had stopped taking one medication that had been prescribed (despite my known allergy to it), and have been operating on the assumption that discontinuing it was the reason my throat/neck symptoms improved.  I started a prescription-strength NSAID and my first DMARD at that same time, though.  Maybe that’s the connection.

This is the most frightening thing I’ve heard about RA to date.  I’ve been religious about taking all my meds because I don’t want to lose the ability to walk.  Walking is nothing compared to breathing.

I love music.  I love to sing.  We sing in my house.  All the time.  We sing in the car.  I sing at the local nursing home. I’ve been known to joke that the residents can’t hear so it doesn’t matter what I sound like, and they’re not ambulatory so they can’t walk out on us even if they don’t like the sound.

The thought of losing my voice or needing a tracheotomy is more frightening than the possibility of ending up in a wheelchair.

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