World Arthrits Day--The Truth about Me

Today is World Arthrits Day. Bloggers around the world are telling their arthritis stories--and they are telling them for a reason. They are telling them because they want the world to know, to understand a little more what it means to have autoimmune arthritis.

Not osteoarthritis, and not because that is not painful, but because there is a difference. And they, we, want you to know about it. Because it is frustrating when you don't know. It's frustrating when people act as if we are somehow to blame for our disease or that our disease is not serious.

A few weeks ago I posted a link to an article called "An Identity Crisis for RA" by R. Franklin Adams, M.D. in the September 2011 The Rheumatologist.

He begins "Despite the numerous advances in treating rheumatic diseases over the past few decades, a major communication gap still exists in the community regarding the complexity and gravity of rheumatic diseases."  I hope you read that article.

I have rheumatoid arthritis. I was diagnosed when I was 38 and I am now 43. I've told parts of my onset story before, in this post for Invisible Chronic Illness Week.  And now I've got a bit more to say.

Rheumatoid arthritis is an autimmune disease. To put it simply, my body is at war with itself. The parts that should defend me are instead attacking me. My body is actually destroying my joints. It's not that I was overweight or smoked or even that I had too much stress in my life. I know those are all things you might have heard--and after I came down with RA those things could make it worse. But by themselves, those things cannot cause RA.

You see, really, I hit the genetic lottery. My paternal grandfather had RA. My mom had JRA. Like many autoimmune diseases, RA genes remain dormant until somehow triggered. And sometimes they never are. Scientists don't yet know all the details of why the genes get turned on.

At 38, I weighed about 130 pounds. I was healthy. I was enjoying my life.  I remember at the time feeling like I was at an especially blessed place.  I was probably working a little too hard, pushing the working mom thing a little harder than I should have been. But I was really, really loving it. I remember noticing my feet hurting more than they should have. I mentioned it to a friend. She remembers worrying about it from afar. In the spring of that year, during a big project, I came down with the flu, then pneumonia, then shingles. Three months later my joints exploded, or so it seemed to me.

Were those infections the trigger for my first big RA flare? Or did the lurking RA leave my body vulnerable to those infections?

A giant flare built within a month or so. I was quickly diagnosed, probably quicker than most people. An almost classic case even if I am seronegative (my bloodwork is normal). 

And what has happened since then? A happy ending as the RA biogolic commercials would have us all believe? Not really. I slowly reduced my hours at work and finally stopped working. I have the most Wonderful Employer. And now I work a bit from home, but even then it's often a stretch for me to keep up with an hour or so a day and the mom gig. I've hardly been off prednisone over the last 3 years. All three of my children are celiac/gluten intolerant, and I feel a very strong need to keep up with grocery shopping and cooking to keep them healthy and attend their events. Without prednisone, I just can't seem to manage.

Two biologics--those oft advertised and extremely expensive RA meds--stopped working, and it looks like another is on its way out. I have had repeated rounds of shingles--the painful virus that kicked off my travels into the world of RA now seems to be a semi-permanent traveler with me. I have hardly been able to express in this blog the despair and difficulty that this has caused for me and my family. Most of the time, I'm not sure which is worse, the RA or the shingles. Over the last year I have gotten weaker and weaker from the repeated bouts with this cantankerous virus.

My flares seem less severe since I started eating gluten-free, but my feet, hands and hips are a constant source of frustration. Walking very far or doing very much house work with my hands causes a flare, and then it takes weeks for them to be normal again. I need help with chores that involve things like scrubbing or repeated motions.

And so now the hard truth: My life is much different than the way I once envisioned it. Since my meds aren't working great right now, I don't do much volunteering. I don't attend many functions at night. I miss out on most of the social aspects of my old life. And I miss that more than you can possibly imagine. I thought, right now, I'd be working, teaching Bible classes, helping with my kids school activities, working with marriage classes (something my husband and I loved doing before), traveling with my husband. There are blessings in this quiet life, don't get me wrong. But it is not the life I imagined.

Often people look at me and think I'm well because I'm dressed and smiling. I don't explain because it's just too hard.  I write this blog to preserve a little sanity.

Even my husband says he can't always tell how I feel by the way I look. That's why it's called an invisible illness. But most illnesses are invisible, aren't they? Can you tell someone has cancer by looking at them? Or diabetes? Is it fair to assess my health status or tell me you know so-and-so who has it so much worse than me? How would you know that?

And so I'll end with this. I am not in general a "cause" person, but I'm  happy to write for this one. Because this one benefits not only me but also my daughter  and so many beloved friends and blog buddies that I've come care about.

Autoimmune diseases are in general misunderstood. Take a little time today to understand. To listen instead of assume. You might be surprised at what you don't know.

130-38-43  My numbers--My weight and age at onset and now. Look for them today on Facebook as others with RA post theirs.

Share your numbers and onset today here or on facebook. Spread the word about the differences between osteoarthritis and autoimmune arthritis. Or share a friend's.