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What I want people to know about RA.

I’ll never forget the time someone asked me why I let my life revolve around my Rheumatoid Arthritis.

I almost laughed, because the truth is, I don’t.  In fact, I like to think that my RA revolves around me.. for the most part. So here I am, living life with RA following me around like a lost puppy:

Today, my thumb kills me every time I move it. For those of you who don’t know what that feels like, it feels like having to go through life with a workman’s clamp closed on your joint. At first, it’s not so bad, but after a few hours (or days), the joint is so swollen and red, it’s warm. Then it feels like I slammed a car door on my thumb. I notice it’s getting worse when I absentmindedly begin using my dominant hand less and less. But I do my best to continue my daily tasks, like stapling billing paperwork, for example. I consider going paperless to save my thumb…(Tonight I’ll search Amazon for an automatic stapler). As I drive to the Tag agency, my vision started to blur and my eyes grew heavy even though I woke up only 3 hours before. So I immediately detoured home to rest/replenish my “spoons” before continuing my day.

Two hours later, I set out again, driving coolly with my left hand at 12 o’clock on the wheel. I’m feeling confident again because today I put on makeup–which I usually only apply once or twice a week, but any day with makeup means no more “spoons” left for my hair. So I preplan to flat-iron my hair on Tuesday and put on makeup Wednesday. Thursday is a French-braided ‘do and by Friday, my hair will be dirty, but perfect for a slick-backed pony and light makeup again. High pain days means no hair & big sunglasses and I thank heaven beachy-messy waves are ‘in’ again.

I made seven stops total on my way to finish the errands and eagerly punch in every address (even though I know the way) to avoid Miami traffic and save my stiff hips from more abuse. I finally arrived back home after four hours and crash on the bed. Before my head hits the pillow, I text my husband, “I can’t cook tonight. Order in?” And the days go like this: If I was out all day, we order in. If I worked from home, I cook dinner.

So you see? How can self-care and careful “spoon” maintenance planning equate to my life revolving around RA? Just because I’m an advocate, just because I blog and I tweet does NOT mean I let my life revolve around my RA. I don’t let RA stop me, but we have agreed to slow down. The majority of the time, slowing down frustrates the heck out of me, but since slow is as fast as I can go, I will continue on–slow and steadily ahead.

Why I like "Rheumatoid Arthritis" better than "Rheumatoid Disease

When people think of ‘Arthritis’, I like that they think of their grandmother, with mangled hands sitting in a wheelchair.  

When I tell someone, “I have Rheumatoid Arthritis,” I like that they are looking at my Young Face and simultaneously picturing their crippled grandmother.  
The word ‘Arthritis’ doesn’t need to be explained. They know what it is and how ugly it can be. What they don’t know is, to what extent.
There are over 100 types of Arthritis & 350 million people affected worldwide-not including those 350 million people’s family members. 
It’s possible the person I’m disclosing to knows someone with a type of Arthritis, but definitely no one as young as me. 
Then they ask the million dollar question: 
    “…But doesn’t Arthritis only hit at old age..?? 
    “Not Rheumatoid,” I respond, “Rheumatoid Arthritis is the worst of the Arthritides and it can hit at any age. I got it when I was 5.” At this point, their eyes usually widen, followed by a quick in-take of breath. The news shocks them. They know this disease is worse than grandma’s, because I got it so young. They also know my future. 
My future is their grandmother’s present. 
    Then they ask, “Isn’t there anything doctors can do? Medication?” 
    “Chemo”, I respond and methodically enunciate each syllable of my triple-therapy-combination, Methotrexate+Orencia+Plaquenil. 
    “Chemo for Arthritis. Now that’s a phrase that sticks with them. I don’t think the affect would be the same if it was, “Chemo for rheumatoid disease.” 
I like the word “Arthritis.” It suggests Deformity, Disfigurement, Ugliness. 
Which is exactly what Rheumatoid Arthritis is most commonly characterized by. 
It’s painful, it’s ugly, and it’s unforgiving. 
Then I hit them with the cold hard facts. As if mutilated joints wasn’t bad enough.       “For me, my RA has progressed to my stomach (that’s what my doctors say). Three years ago, I was diagnosed with Gastroparesis, which means my stomach doesn’t empty as fast a yours. I process food at 46% of that of a normal person. So I throw up a lot. At best, several times a week, at worst, several times a day.” This is when their face scrunches up, as if in pain. 
    “God, that’s horrible. I hate throwing up.” 
    “Me too,” I laugh. 
    “I’m lucky though,” I continue, “RA can progress to the heart and lungs, and even cause blindness. I get checked for that stuff all the time, but so far-so good! 
RA is like Lupus’ stupider, uglier, fatter cousin,” I giggle. I like my analogy to Lupus. People know Lupus too. This is typically when their eyes close and their head starts to shake, jaw clenched, as if to say, I don’t need to hear anymore, but they’re too polite to say so.
Then the most sought-after question follows. The one that is never absent during my RA disclosure. 
    “Gosh, how do u stay so positive?” 
Without skipping a beat I say, “I’m grateful for today. That today I’m doing OK because with RA, tomorrow is never promised.”
 I do believe people’s preconceived notions of what 
Rheumatoid Arthritis is or isn’t, is a problem.  
I can’t tell you how many times my college professors/administration have put me down, 
believing that because I “look” fine, that I am fine.

That being said, however, I definitely think it has more to do with 
spreading awareness and education, than just a simple name change. 
Awareness doesn’t have to be some big grand gesture or even a blog post.
It can be something you do at home. 
Sharing your story with the lady in the checkout line.
Changing your world.
One person at a time.

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