Saturday, July 2, 2011

My First Blog Post

This is certainly not the retirement I had planned.

Well, here I am - blogging. Imagine that. Honestly, I never thought I had much to say in this format. To be frank, I've always regarded blogging as an activity for struggling writers or the painfully egotistic, and I didn't think I fit into either of those categories. Hmmm, guess I'll rethink that. *seconds pass* Yup, I must be a struggling writer after all.

Come to think of it, this past year has been an exercise in rethinking a lot about myself. For my entire life I defined myself as strong, controlled, capable, healthy, reliable (yes, I see these are all positive attributes - I didn't list humble).

But when your laser-like focus is reduced to counting the minutes until you can legally pop another pain pill or measuring how long you can avoid vomiting from poisonous medications; when your steel trap of a mind is muddled by the logistics of carefully rationing your steps around the grocery store so you won't have to use the dreaded electric cart; when you cancel social events, leave early or don't make plans at all because a 30 minute car ride leaves you feeling like you ran the whole distance .. without shoes .. on broken glass - well, you tend to stop thinking of yourself in sterling terms like reliable, strong, capable. You feel broken, weak, good for nothing. And in your newfound humility, you let go of some of your arrogant ideas about things like, well, blogging.

I can imagine you asking yourself at this point, "What the hell happened to her?"

I have Rheumatoid Arthritis - a chronic, incurable autoimmune disease. The hallmarks of RA are bone-crushing fatigue, unrelenting pain and loss of motion in joints, muscles and tendons, with eventual joint destruction, deformities and a probable early death. Confusing isn't it, because the name makes it sound like the arthritis we all know old people get when their joints wear out (osteoarthritis).

But it's not what you think. It is your immune system gone wild, attacking and eventually destroying - yes, joints - but also tissues and organs like your skin, your heart, your circulatory system. Children and young adults can have it, though it is more commonly diagnosed in the 40s and 50s. Women are three times more likely than men to have RA, but men usually suffer with more aggressive disease. I am absolutely stunned that I made it into my 50th decade without knowing these things about RA. And my mother had it. About 1% of the world's population has it - that's over 68 million as of mid-2010. If hearing these facts makes you curious, check out the links on this page for more info about RA.

So, if you've stuck with me this far, here's the payoff. Why, you may ask, am I blogging?

I'm blogging so that if I'm lucky someday, somewhere, someone who has read this blog will meet a person with RA, and will not say (as I have before), "Oh arthritis - yes, my grandma has that in her fingers."

I'm blogging so maybe someday a person who is frantically searching for information about his newly diagnosed RA will find this blog in the ether and be reassured, like I was, that there are others who can offer advice and support.

I'm blogging because I have read ridiculous, obsolete information about RA on the internet, and I was saved by finding the blog of Kelly Young (, an RA patient who gave me a safe place to ask questions and learn about my disease.

I'm blogging because it's sad, so sad, that I can't make a targeted contribution to fund research toward a cure for a disease that afflicts 68 million people (more than Autism affects worldwide).

And I'm blogging because I want to shout out loud to anyone newly diagnosed that I've made it through the painful, terrifying, grueling first year of treatment for RA and I still have hope, I still have fun, I still have my sense of humor ... and I still have plans!

Peace out.

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