Focusing on What I Can Do With a Relapsing Polychondritis Diagnosis

Author standing in front of the arch of a canyon on a hike I was adopted at birth. It has never been a secret and it has never been a problem in my life. You may have, at least once, looked at your family and thought, “How on Earth can I be related to these people?” I’m not.  Score! There is one less than perfect aspect, though: I do not look much like my family.

My mother and sister have very elegant hands with long, thin fingers and beautiful nails. My hands? Not so much.

All of the members of my adopted family have olive skin that tans beautifully. My skin? I am so white I am see-through.

All of the members of my adopted family have lovely, thick, wavy hair. My hair? Baby-fine and stick straight.

I have, at times, hated my hands and my skin and my hair, but recently I am experiencing a different form of body-hate: my body hates me.

On October 9, 2012, I was diagnosed with relapsing polychondritis. Don’t worry, it’s not contagious. Relapsing polychondritis is an auto-immune disorder. There is no known cause and there is no cure.

My immune system is attacking and destroying the cartilage in my body.  The first cartilage destroyed was in my left ear. I woke up one day with a cauliflower ear. My ear now resembles one of a wrestler, boxer, or rugby player. Bizarre, yes, but it was not really a huge deal. I keep it covered with my long hair.  It can actually be a source of some amusement. I tried to convince some of my children’s friends that I was injured engaging in a mixed-martial arts event or perhaps a backyard cage match. They almost fell for it.

My next symptom was pain in my joints — my hands, elbows, jaws, knees, feet, and hips. The pain came on gradually so I did not notice it at first. Trust me, I notice it now. I am 43 years old but feel 83. Often I feel even older than that.

This insidious disease next struck my right ear and my nose. I have experienced painful cartilage deterioration in both places. Fortunately the damage is not yet visible to the casual observer. I can cover an ear with my hair — even both ears — but my nose? My hair won’t cover that. I am reminded of a Rita Rudner joke: “I was going to have cosmetic surgery until I noticed that the doctor’s office was full of portraits by Picasso. My nose may not be perfect, but at least it’s centered.” I have never loved my nose, but I am very grateful to still have it!

And now for the really bizarre parts: This disease can attack my trachea. If it becomes severely damaged, I may need a tracheotomy where I would forever breathe through a hole in my neck. I may lose my voice as well. This disease can attack my heart. If it becomes severely damaged, I may need stents to support my weakened arteries. A few days ago I began to have trouble swallowing liquids and may need to have my esophagus stretched. I am not making this up — they actually can stretch an esophagus. I am experiencing pressure inside my ears and have already lost a significant amount of hearing. My eyes are currently unaffected, but they are at risk.

This disease is truly a little slice of heaven.

I will live on medication for the rest of my life. Pain medication. Anti-inflammatories. Immunosuppressants. Steroids. The list will get longer.

I have told some friends and a few family members. I am not telling the people I work with because I want to continue to work as long as I am able. If they know I am sick, I may not get the contracts I rely on. So why am I blogging about this? I need a space to process all that is happening to me.

Since my diagnosis, I am rotating between shock, horror and depression while trying to ignore the all-consuming fear. Every new symptom causes me to loathe this disease even more. But I am a planner and I am a do-er. So what are my plans? What can I do?

I can fight this every step of the way.

I can be grateful for every good day and every small blessing.

I can love my body even while it hates me.

I can stay out of the sun, eat right, exercise, get enough rest and manage my stress.

I plan to be healthier in one year than I am today.

In short: I plan to make relapsing polychondritis look sexy.

One of my favorite books is “Rita Hayworth and the Shawshank Redemption” by Stephen King. The last line of the book is fitting: “I hope.”

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