Sum of the parts

The (awesome, if you ask me) analogy that follows is all Leigh.  Not Lydia.

Pretend, for a moment, that you find out that I’m going to give a presentation in your town next week.  You email me to ask if we can meet up the next day, maybe have some lunch.  I say, of course we can.

So I show up to lunch, and do my best with the whole meet-and-greet routine, likely wandering away at one point if not more.  And you notice, oh hey, she’s wearing a bright pink hoodie.  Say you didn’t know I had a bright pink hoodie (even though I think I’ve mentioned it before because it’s an awesome hoodie so you probably actually do know, but this is pretend, so in this case, you don’t know).

How would you react to my hoodie?  Would you be shocked that I have a pink hoodie?  You probably wouldn’t even notice, right?

Now, practically, what if I showed up to our lunch date walking with a cane?  What would you think?  Is it really any different than showing up in a bright pink hoodie?

I want to say, first and foremost, that what I’m about to say does not mean that I’m complaining.  I’m just explaining, just reporting.  I’m not upset about my situation.

My body isn’t what it used to be.  Starting in, oh, kindergarten, my arms and face got very, very pink and splotcy.  In middle school, my knees would swell in hurt, but I could usually deal with it.  By high school, my right hip was severely painful and locking all the time.  Every time I sat still for more than, oh, a half hour, I couldn’t move it when I got up.

And yes, I fussed.  I don’t handle pain well.  It’s gotten to the point that I can’t very well walk on this hip a lot of the time.  My fingers look like sausages.  My feet and knees swell and turn red.  Still the rash, and now I get fevers every night.

Diagnosis? Juvenile Rheumatoid Arthritis.

If you’re like me, that leaves you with a big, fact, “Oh.”  Yeah, I didn’t know what that meant.

The doctor said that, because I can’t take steroids due to the diabetes, I can consider methotrexate, which is a really hefty drug used for chemotherapy.  It would help the pain, swelling, and fevers, but it can also be very dangerous.  If we don’t control the inflammation, I risk joint deformity and issues with my vital organs.

Don’t ask me if I’m going to take it yet, because I don’t know.

So there’s your background.  Again, not upset.  I am me.  Nothing is going to stop me.  Yes, sometimes I have to type with two fingers.  No, my fingers don’t straighten all the way anymore.  Does that make me a different Lydia?  Not in the least.  Unlike autism, which finds its way into my very identity, JRA is just something that affects my body.  I am not my body.  I am Lydia; I am my words, my thoughts, and my heart.

To come full circle, I’m faced with using a cane because sometimes, when we’re out and about, my hip acts up and I get stuck wherever I am.  I debated all week about writing this post.  I talked to Leigh about it, and being the awesome Leigh she is, she said how I don’t owe it to anyone to tell them.  But then, I’m not ashamed, and why should I be?  She said to write if it connects to autism, etc, and you know… it does.  Truthfully, everything connects to autism.  Can’t get away.

When you see me with my cane, or my pink hoodie, I hope neither catches you up.  I hope you just see Lydia.

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4 thoughts on “Sum of the parts

  1. I was going to say the exact same thing! Pink cane! Hey, it’s nothing a little pink duct tape can’t fix! I have a cub scout with jra. We make accommodations, but there’s nothing he can’t do!

  2. So sorry that you have to deal with this on top of everything else, Lydia. That is really hard. I would think nothing of a cane. Congrats on the presentation in Ohio!

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