I love stories, and story-telling. My heroes have always been the characters in my beloved books. I’m not an author, but I love studying the art of crafting a good story. As it happens, this is a fundamental trait of humans, this love of story. It’s deeply rooted in our collective consciousness, a part of who we are. 

In 1949 Professor Joseph Campbell wrote a book about the idea of the same story being told over and over throughout time and cultures, called “The Hero With a Thousand Faces”. Campbell’s ideas were popularized and adapted by author Christopher Vogler in his book “The Writer’s Journey”.

The story goes something like this: an ordinary person goes on an adventure, has a thrilling crisis moment, wins a decisive victory, and then returns home transformed, saving his community. A key element is that the person reaches a “point of no return” and cannot return to his or her “normal” world. The hero has to go on or die. Hollywood knows and loves this formula. We’ve been inundated with the Hero’s Journey all of our lives, from Star Wars to Braveheart to The Wizard of Oz to The Lion King, probably without even realizing it. We love this formula…who doesn’t cheer on Luke Skywalker as he strides up to that platform, and gets his medal from the princess?

Sometimes though, the hero has to be dragged kicking and screaming into the story. These characters are known as “reluctant heroes”. For instance,

• My favorite reluctant hero, Han Solo, would have preferred bootlegging with Chewbacca to saving the Republic
• John McClane would have preferred cocktails with his wife on Christmas Eve, rather than battling bad guys at Nakatomi Plaza
• Katniss Everdeen probably didn’t start her day out thinking that she was going to become the face of the rebellion
• Frodo Baggins just thought he was storing a trinket of his crazy uncle’s…

…and the list goes on.

So what does this have to do with me, and my immune system?

Back in January of this year (2019), I began experiencing hip pain. I’ve always known that I had shallow hip sockets (based on some earlier imaging), and was expecting at some point to have issues there. I went to see an orthopedic doc, and had an MRI of my left hip. The MRI showed a torn labrum, which wasn’t a surprise, but what was a surprise was that the image also showed…arthritis. (“What? I’m only 53!”)

A week or so later, I had a bad weekend. I thought I was coming down with the flu. I took it easy for a few days, hoping that it would pass. It didn’t. Aside from a constant, crushing fatigue, I was daily experiencing what I would call “traveling” joint pain. Some days it was worse in my hands, some days my ankles, always my knees, and occasionally my shoulders and elbows.

Over the next few weeks, I developed a sore throat, and a tiny bit of a strain in my voice, along with an annoying little cough. At times I felt short of breath, and I had a constant feeling that something was “stuck” in my throat. Then came the chest pain. I started keeping a journal of my symptoms, but it became pretty monotonous and I gave it up.

When it didn’t go away after a month, I booked an appointment with my general practitioner. He did some bloodwork which came back normal, and promptly referred me to a rheumatologist. When I met with the rheumatologist, he ordered some more bloodwork, took down my history, and examined my joints. At the end of the appointment, he gave me his diagnosis, inflammatory arthritis.

Which of course meant NOTHING to me.

As in, “Hey, come on here, I’m in dire pain, SOMETHING is wrong with me.”

So then I went a little haywire and became a real nuisance to the medical community. I went on a testing spree, trying to diagnose what was going on with my body. (This is where the reluctant warrior part comes in, I promise I’m getting to that.) Within about a 2 month period I had the following tests done:

• Mammogram
• Chest x-ray
• Chest CT scan
• Barium x-ray
• Endoscopy
• Nuclear stress test

Yeah, it’s kind of embarrassing now.

But you see, I was looking for virtually ANY other cause for my issues than “arthritis”. That just didn’t sound serious enough for what I was experiencing.

At some point, I threw my back out in the course of just walking up the stairs, and was forced to walk at turtle speed for a week. The fatigue and all over body pain was now joined by neck and back pain, and most recently, TMJ pain.

I had a last-ditch meeting with my general practitioner, to see if he thought we were missing anything. He looked at my rheumatologist’s report, and said, “Wait – he diagnosed you with inflammatory arthritis – that’s not “nothing”.” (He then strongly suggested that I should take some anti-anxiety medication, but that’s another story.)

I left his office and began educating myself on what exactly inflammatory arthritis is, and I resolved to learn as much as I could about it. What I learned was pretty scary, and I decided that I probably should respect my new adversary, which is just as lethal as Darth Vadar, Hans Gruber, President Snow, or Sauron and the Nazgul. Inflammatory arthritis is an autoimmune disorder that can cause a lot of nasty symptoms and ailments, which are way too bizarre and unbelievable for one blog post. It’s a bit like Ripley’s Believe It or Not, or an episode of “Fringe”. But whatever you take away from these words, know this – it’s no picnic.

In the meantime, I made another appointment with my rheumatologist. He explained to me (again) that “inflammatory arthritis” is an umbrella term for many different autoimmune diseases; we just don’t know which one in particular is affecting me yet. There is no magic pill for this, although there are some promising medications that will help me manage the symptoms and will slow down the progression of the disease.

He says that I am probably in that 20% – 30% of people who are experiencing Rheumatoid Arthritis (RA), or as I prefer to call it, “Rheumatoid Disease” (RD) (because arthritis is only one symptom), without actually testing positive in the various blood tests. (His diagnosis is based on my pain pattern and symptoms.) My throat issues I now can attribute to “Cricoarytenoid Arthritis” (CA), and my chest pains I can fairly safely attribute to “Costochondritis”, but I’m keeping the number of a good cardiologist handy.

We are beginning a course of treatment that I am hoping will make a difference in my pain level, and halt the degeneration of my joints.

(CA and Costochondritis are actually both quite common in RA patients)

Having said that, there is a chance that I have some other type of autoimmune disorder. It’s too early to tell. There are a handful of other possibilities that fall under the “inflammatory arthritis” umbrella. If I respond well to the medication that I’m taking, we can put that in our information bucket and move forward.

I’m now a pain warrior, but I never wanted to be one. Every day I feel like my body is fighting off the flu, or an infection. In my own personal story, I guess I’m what I would call a reluctant hero. I’m in a strange new world, and there’s no going back. It’s either fight or give up, and I’m not ready to give up. I may have started out reluctantly, but I’m preparing for the battle now. The initial skirmish has begun, but I think it’s going to be a long-term engagement.

There are a lot of RA myths out there, and a lot of misinformation is floating around. I think that this is what caused me to discount the initial diagnosis. I had no idea what it actually meant. My hope for starting this blog is to share information and awareness about this illness, and to share my story as I move through it.

I thank God and my husband every day for taking such good care of me. (And my mother for listening to me complain.)