RA (Rheumatoid Arthritis) Sucks

False Start

Yes, it has been a while. And you've missed me, I know. Bwahaha....

I guess I just had a weird thing happen oh-so-long-ago: I made an unconscious decision to try to live a life outside of my identity as an RA patient. I decided to go out more; to play golf more; to travel more; to eat and drink more; and, most importantly, to concentrate on my RA less.

Now, I know that there are tons of people who say, "I am not defined by XYZ." But the truth is that they are. And I was one of them. No matter how much I snarkily proclaimed otherwise, in some ways, I let my disease be my dictionary: "Let's look up the definition of achy. Hmm: it says Kim." "Well, then let's look up the definition of tired. Whaddaya know, that says Kim, too." "And douchey? Yep, you've got it: Kim."

I just got really tired of all of that crap. Of visiting forums and reading blogs, nearly all of them RA-related. Of looking for the latest RA-related medical news. I mean, I was spending so much time looking at RA that I wasn't actually living with RA. If that makes sense.

Anyway, one day, I just stopped. I don't know how. I don't know if there was a particular bit of information that might have made me throw up in my mouth a little bit. Who knows.

All I do know is that I started going out and living. And to my utter non-surprise (remember, I am a trained therapist), I stopped thinking about RA so much. Gradually, its effects didn't bother me nearly as much as they once did. Sure, every once in a while, I'd find myself thinking, "Shit, my hands hurt!" But then that thought would vanish from my mind as I looked at that little pink golf ball and tried to figure out which iron to hit it with. (It turns out that it didn't matter: all of my irons go the same distance anyway. Because I suck.)

Of course, as a therapist trained in the cognitive and behavioral traditions of therapy, I would expect that changing my cognitions and/or behaviors would change my feelings. But I guess I'd never really put it all into practice. Ha!

RAer, heal thyself.

Pax.

If Only....

Having contended with an excess of pain, disability, and occasionally even social shunning, many people with chronic illnesses develop IOS -- "'If Only' Syndrome." IOS refers to the tendency of people plagued by chronic illness to declare that if only they didn't/could/couldn't/did X, then their quality of life would be so much better -- with "X" varying from month to month, year to year, etc.

Let me give you some examples: "If only I could walk longer distances, things would be so much better." "If only I had better control of my hands, I could do so many more things." "If only I didn't have to wear these heavy braces, I'd have more energy."

You know what I'm talking about, of course. And given that RA is chronic and incurable, there is a kind of wistfulness to our "If Onlies." They reveal, at any given moment, what's bothering us the most, what's the most important to us, what we would do if we were given magic wands or super powers to limit our disease (after all, we're not talking about being God/Gods here: we can't remove the disease from our bodies.).

In my case, for the past year, my "If Only" has centered on my neuropathy. If you don't know what that means, I'll gladly share with you the simple definition: it's when thing go screwy with your nerves. In my case, I have peripheral neuropathy, which means that things are screwy with the nerves in my feet and legs and hands and arms.

Apparently, neuropathy is not uncommon in RAers, for the simple reason that inflammation of the joints results in inflammation of, and damage to, the nerves. Unfortunately, nerves are notoriously difficult to heal (which is why people who suffer from significant spinal cord injuries remain paralyzed more often than not.).

So, yeah, neuropathy. In my lower body, the toes go tingly and numb while a burning sensation encompasses the rest of my foot and my leg up to about mid-calf. In my upper body, my fingers go tingly and numb while a burning sensation encompasses the rest of my hand and my arms up to my elbow. I also have some burning at the back of my neck. The neurologist said something about some degeneration that RAers can develop in the c-spine, and I have a moderate to severe case of it, but blah, blah, blah, blah, blah. 

So, if only I didn't have this friggin' neuropathy, my life would be SO MUCH BETTER, dammit!! I could deal with the rest of the RA bullshit.

At least I think I could.

What's your "If Only?"