RA (Rheumatoid Arthritis) Sucks

I'm Gumby, Dammit!

There's an old adage that says, "We make plans; God laughs."

In my new RA life, however, I'd change that adage to "I make plans; RA laughs."

One of the most frustrating things about having RA is that I've been forced to become ultra-flexible (and I don't mean joints-wise). I used to be able to make plans weeks (or at least days) in advance -- and subsequently keep those plans. Nowadays, however, since I'm no longer sure what I'll feel like on any given day (okay, achy, tired, etc.), I may be forced to change plans at a moment's notice.

For example, during the holidays, I occasionally was unable to accompany our guests to planned and spontaneous museum or store outings (activities of which I wanted to partake) because I was just so fatigued. The only thing I could do was nap. I can't tell you how disappointing this was.

I never was a terribly rigid person (obstreperous, yes. Rigid, no.). But RA is causing me to be bendy and twisty all over my life. And I hate it.

Of course, when I was a kid (lo, these many years ago), I used to think that hyperflexibility was ultracool. Remember how we used to stare in admiration and amazement at kids who were double-jointed or who could bend their middle fingers back all the way to their wrists?

The deep irony in all of this is that even as RA has forced me to become flexible in my life's activities and plans, it is making my joints become more and more rigid.

This disease is a bitch.

I just can't wait until the day that RA makes plans, and I'm able laugh.

The Beast Within

So, I've mentioned previously that I will read anything (except romance and westerns) depending upon my mood. For the past year or so, I've really been "into" horror novels: zombies, werewolves, vampires, ghosts. You name it: If it's got gore and bodily fluids as part of its narrative, I'm there. Although I think I've always been a bit of a ghoul (I've loved Stephen King from the earliest I can remember), I think I like horror right now for two main reasons:

1. It's at least slightly comforting to think of a world in which I could be worrying about having my arm gnawed off, my brain eaten, or my body besieged by blood-sucking leeches than it is to think about the pain and complications of RA. I mean, in horror, things definitely get worse. So in that situation, who gives a shit if you have RA?
2. In horror, you're always fighting, at the basest level, for survival of the organism -- maybe even survival of the species. There's no "quality of life" crap to think about when life is distilled to its very essence.

Anyway, in my latest horror novel ("High Bloods" by John Farris; it's a werewolf rag), I was sort of caught up by one of the quotations the author uses at the beginning of his novel. From Samuel Johnson: "He who makes a beast of himself gets rid of the pain of being a man."

Since reading that quotation, I've been thinking about how "beastly" people with chronic illnesses can, unknowingly, sometimes be. And by beastly, I suppose I mean "bitter, nasty, etc." -- all the things that draw us away from other people and our humanity rather than towards them.

And we all do it occasionally. I know that depending upon my pain levels, for example, I can be irritable, grumpy, vexed, in high dudgeon, and even unapproachable. When I lash out at others and at the world for my inability to interact with them at the levels I desire, I release my inner beast. And in doing so, for maybe just the merest moment, I no longer feel my pain -- I no longer feel the ache of my very human condition.

Afterward, of course, I am overwhelmed by guilt and full of apologies. (It seems to me I spend a lot of time apologizing, especially to Eric. Sigh.) 

But you know, I'm incredibly glad that in the midst of being a person who coexists with the pain of RA, I am able to remain mostly human. I am able to keep the beast -- the monsters of anger, estrangement, alienation, and bitterness -- mostly at bay. 

Yes, I've been "infected" by the RA "virus." But that doesn't mean I have to be a monster. At least not all the time. ;)

Statistics and Scare Tactics: Pet Peeve

You know, I think that with the exception of RA (and maybe people who don't appreciate port... okay, and people who park like douches... and VA Tech fans... and... well, nevermind), nothing pisses me off more than the use of scare statistics -- those statistics that inculcate fear rather than education or knowledge on the part of those who hear them.

Let me give you a good (i.e., totally shitty) example of one such report that I read today. It comes from a Johns Hopkins medical alert: 

The association between rheumatoid arthritis (RA) and cancer is not completely clear. Some studies show an increased risk of cancer in people with rheumatoid arthritis (RA) while others show a decreased risk. But the picture becomes clearer when researchers look at specific cancer types.

Lymphoma. The strongest evidence of a link appears to be between lymphoma -- the most common type of blood cancer -- and severe rheumatoid arthritis (RA). Researchers from Sweden examined data from nearly 75,000 RA patients, 378 of whom had lymphoma. The researchers assessed risk for three different levels of disease activity (low, moderate, and severe) and found that people with moderate disease activity were eight times more likely to have lymphoma than those who had low disease activity, while those with severe disease activity were 70 times more likely.

More support for a connection comes from a review of 21 published studies, including the Swedish study and 13 others that tried to determine whether there was a link between lymphoma and rheumatoid arthritis (RA). The findings, reported recently in Arthritis Research & Therapy, showed that overall, people with rheumatoid arthritis (RA) were twice as likely as the general population to develop lymphoma, particularly Hodgkin's lymphoma (one of the most curable types of cancer when detected early).

Lung cancer. The same review also reported that lung cancer was observed more often in people with rheumatoid arthritis (RA). Based on data from 12 studies, people with rheumatoid arthritis (RA) were 63% more likely to develop lung cancer than the general population.

Okay, so you read these statistics, and you get alarmed: "Holy shit! Oh Em Gee! I have RA! I'm going to get lymphoma or lung cancer!"

Now, I'm not saying you're not going to get one of those diseases, but the statistics that Johns Hopkins has provided are next to meaningless because they omit some incredibly critical information: namely, the incidence of each disease in the general population.

Huh? F*ck the what are you talking about, Kim?

Well, according to the lung cancer study, people with RA are 63% more likely to develop lung cancer than the general population. Oooh: scary. But, what's the incidence of lung cancer in the general population? For example, if it's 1 in a million, are you going to be worried about having a 1.63 in a million chance of developing lung cancer over your lifetime? Hardly.

Want to know what the relevant stats are? For men and women combined, in the general population, there is a 1 in 14.5 chance of developing lung cancer, which calculates to a 6.9% chance of developing said cancer. Thus, for RAers, who are 63% more likely to develop lung cancer than the general population, there is an 11.2% chance of developing lung cancer. RA increases the risk of developing lung cancer by 4.3 percent. RAers thus have about a 1 in 10 chance of developing lung cancer. It's not quite so scary now, is it? 

And what about Hodgkin's lymphoma (the most common type of lymphoma developed by RAers)? Well, crap. In the general population, there is a 1 in 438 chance of developing said disease. In other words, there is a 0.2% chance of a "normal" person developing Hodgkin's lymphoma. If RAers are twice as likely as people in the general population to develop this cancer, that means RAers have a 0.4% chance of developing Hodgkin's disease. (I'm aware that these stats are not spot on, simply because the article didn't tease out the varying lymphomas. But you get the picture, don't you?)

Mark Twain once famously said that there are three kinds of lies: lies, damned lies, and statistics.

Stop all the worrying, and don't let the statistics damn your life!

In Recovery

Well, I had my hip surgery last Friday. And it has revealed to me four things:

1. I am getting old.
2. Trying to get around on crutches / a walker while being off RA meds doubly sucks.
3. Because my arms, chest, and stomach hurt so much from trying to get around (let my life serve as a warning to others: this is what happens when you're fat and out of shape and have hip surgery), I have become pretty much entirely dependent upon Eric for everything (though at least I can still get on and off the toilet "under my own steam." Couldn't do that the first night, though: Consequently, I'm now the happy owner of four different, large medical supplies. Sigh.)
4. I have reached the end of viewable television.

Anyway, I cannot put any weight on my right leg for six weeks. That's right: SIX weeks! Ugh. To be honest, I'm not sure how I'll do it. If I'd known how bad this would be, I think I might have just gone and lived in pain for the rest of my life.

Granted, I brought a lot of this on myself, by being a witless lard-butt. But one of the pre-op nurses said to me, "You're too young and not overweight enough to have this happen to you. How did it happen?" The short answer is "probably golf." But it all had me wondering how in the world the elderly and the very overweight do this kind of thing.

The surgery itself went well, and I remember not a bit of it (note: this may be why it went well.). My primary concern wasn't pain (I was expecting that), but the idea that I'd barf my way through post-op (as I'd done on nearly every other surgery I ever had).

No barfing for me, though. Apparently, however, I was so concerned about barfing that throughout my recovery room stay, I kept asking, "Am I nauseous?" "No, Kim, you're not nauseous." "Oh, okay.... Am I nauseous?" Poor nurses.

I start PT three times a week beginning next week. Ugh. Not looking forward to it. I also go for a post-op check-up next week.

I miss my life, RA-ridden as it was.

"Accept that you have RA," redux

I've been thinking a great deal lately about accepting the idea that I have RA -- ever since I posted my screed about what I believed to be the cavalier attitude toward acceptance that seemingly was suggested by one website (which subsequently is undergoing editing).

Acceptance is not an easy thing.

The other night, I watched a movie called "Boy Interrupted." It was a documentary that detailed filmmakers Dana and Hart Perry's  heartwrenching experience of the suicide of their 15 year-old son, Evan, back in 2005. The film was fascinating in the way that it opened up so vividly the worlds of mental illness and suicide with nary a backward glance. Nothing was concealed; the entire project was conceived with an eyes-wide-open approach.

What stands out to me most about the film is its final scene, in which Dana, some year and a half following Evan's suicide, notes that she still can't believe it happened; she can't accept it. In some way, for her, Evan's suicide remains beyond the boundaries of reality. And yet, life goes on.

I remember hearing a similar thought from my mother in the aftermath of the unexpected and tragic deaths of her mother and her only sibling, just a few months apart. She said, "You never really accept it. You just learn to live with it."

You never really accept it. You just learn to live with it.

I don't know whether it's for good or for ill, but if I think very long and very hard about it, it seems to me that this is the way I have approached RA. Sometimes, I just don't believe that it has happened to me. Things like this shouldn't happen to me; things like this happen to people I read about in magazines or see on the news or in films or hear about by word of (whispered) mouth.

You see, I guess I haven't really accepted that I have RA. I'm just trying to learn to live with it.

Disconnect

Despite what I write here on a somewhat regular basis, I'm not a complainer.

Now, yes, I absolutely love to bitch and cackle with glee at other people's stupidity, but, in general, I do not complain about my own circumstances.

I may occasionally mention that I have a migraine or that my hands and feet hurt, but the only person to whom I mention -- not whine or complain about -- my chronic pain is my husband.

It's kinda like what Margaret Cho says about her period: Considering how often it happens, I hardly talk about it at all.

Mostly, I suppose this is because I was raised to suck it up. In addition, however, for a variety of what I'm sure are psychologically deep reasons, I continue to view the expression of pain on my part as a sign of weakness.

I think this puts me at a disadvantage for a number of reasons.

First, it makes me less likely to receive the medical help I need palliatively. Unless I'm pretty much at the "Holy shit, I can't bear this anymore" stage, I'm unlikely to say anything until the pain gets so bad that it's nearly impossible to break the pain cycle. So, I probably live with more pain than I need to.

Second, it makes it that much more difficult for those around me to understand the depth of my pain. For example, yesterday, I had one of the worst flares I've had in a very long time. It was one of those flares that nearly left me in tears. I spent the entire day in bed, just lying there, with my hands curled up. Every step I took was agony. To break the monotony of (and the back pain caused by) lying in bed all day, I came downstairs to check e-mail and post yesterday's (already written) entry. As I was sitting at the computer, Eric said to me, "So what's the plan for today?" I asked him what he meant. He said, "Well, we were going to go grocery shopping." I told him there was no (I might have said "fucking" at this point) way I was going to go grocery shopping, and then I got up and went back to bed.

Now, he had seen me spending all day in bed, basically creaking around like an old person when necessary, making liberal use of the bannister to get up and down the stairs.... And then he asked me if I wanted to go grocery shopping....

Somewhere in there, there exists a major disconnect. I'm not sure where it is. And because I don't know where it is, I don't know how to fix it. If I can't fix such a glaring disconnect in my relationship with my husband, how can I ever hope to fix similar disconnects with the rest of my family and friends?

Operator assistance, maybe? Sigh. I dunno.

A Cold Splash of Water to the Face

I have a certifiable, explanation-defying attraction to certain reality shows. Shows like "The Little Couple," "911: The Bronx," and "Deadliest Catch." I make no excuses for my unseemly, voyeuristic interest in the lives of others. I simply accept it. And I've generally been enjoying my viewing habits.

Until yesterday, when I watched (via TiVo) the most recent episode of "Deadliest Catch" on TLC.

During said episode, Jake Anderson, one of the deckhands on the (Alaskan crab) fishing vessel "Northwestern" learns that his 38 year-old sister, Chelsea, has died from complications resulting from Juvenile Rheumatoid Arthritis, a disease from which she had suffered since the age of two. As he is speaking to his mother for the first time since learning of his sister's death, Jake tearfully says "Mom, she's in a much better place now. She can run now. And she's so beautiful and no one can make fun of her any more."

Honestly, I thought I was going to throw up.

Because what all of it made clear to me is exactly how serious -- how deadly serious -- this disease is.

You know, even though I like to think of myself as a pragmatic and realistic person, I have to admit that when it comes to RA, I guess I'm still in something of a state of denial. And emotionally and psychologically, I think RAers have to be, to a certain extent: we'd be completely certifiable and suicidal if we were to dwell without ceasing on every assault RA can make on our bodies.

And yet....

I think my denial may go beyond the norm a lot of the time. Yes, I've made certain concessions to the disease. I'll sometimes ask for help, for example. But sometimes, I won't. Granted, part of my refusal to request help is due to sheer stubbornness. But part of it is due to the fact that I still can't really believe I have RA.

Why? Well, I have none of the blood markers: RF, CCP, ESR. My CRP level has only been elevated once. Because of all of this, I can't even participate in any RA research studies. Ha! And then there's the fact that I possess minimal swelling. So, those are all indicators that I don't have RA. Now what are the indicators that I actually do have RA? Morning stiffness, chronic joint pain in my hands and feet and wrists and ankles, positive ultrasounds, and positive x-rays. So which is it? Do I or don't I?

If I don't, then what's wrong with me? If I do, then I'm gonna be scared sometimes. Like I was when I watched "Deadliest Catch."

Scared and sad. Scared because it's serious. Sad because people still deride things they don't understand.

Poor Chelsea. I do indeed hope that you are in a better place.

Pissed On and Pissed Off

Today, RA Guy offers an interesting post on his moments of sheer rage at RA and at its effects on him and those around him.

I understand exactly what he's talking about.

I sometimes find myself getting really pissed off about having been pissed on.

The interesting thing about my anger is that it's never low-grade, like my chronic fatigue. Instead, it's like a hot flash: it comes on suddenly, tempers over time, and then leaves me sweaty and trembling.

It's like the anger I might feel right after taking a punch; it certainly puts me in a great position to render a counter-punch. But the problem is, there's nobody and nothing that I can counter-punch -- at least, not without causing some serious damage to myself or to my relationships.

And I happen to think that's one of the "extra-articular" diseases associated with RA. I mean, sure, we can get the "regular old" extra-articular manifestations of RA, like, say, vasculitis, pleurisy, neuropathy, and so forth. But why hasn't anyone ever added "rage" to that list?

William Wordsworth, in his Lyrical Ballads, wrote of "emotion that is recollected in tranquility." He was talking, of course, about the distance necessary between the experience of an event and the reasonable attempt to interpret it.

The problem with RA is that we are never able to gain the distance necessary to interpret the experience of having RA -- because we experience it over and over and over again. It's almost like we awaken every day, receive a new diagnosis of RA, and have to struggle to deal with it.

I've said it before, but I'll say it again: RA sucks ass.

Happy "Independence" Day

Today (7/3) marks the official (i.e., legal) celebration of Independence Day.

It's also the anniversary of the deaths of two of this country's great founders, Thomas Jefferson and John Adams. Both died on July 4, 1826, and among Adams' last words were, "At least Thomas Jefferson survives." Ironically, unknown to Adams, Jefferson had died earlier in the day.

Anyway, on that extraordinarily happy note, let's talk about independence and RA.

It's pretty clear that when people talk about chronic disease in general, what they fear most is pain. And that makes sense. What numbnuts ever wants to be in pain? (Well, okay, let's just admit here that certain people find pain sexually stimulating [13 year-olds, please cover your eyes], but I'll bet they'd change their minds if they had to experience said pain chronically, 24 hours a day. "Permanent electrodes to the... Why, no, but thank you for the generous offer.")

The second thing that people seem to fear with regard to chronic disease is the loss of the very thing we celebrate today: independence.

Think about independence in general. We crave it from our earliest times. In the womb, we kick and move about, eager to be released from its safe confines: "Mom, can you hear me? Let me out, dammit, now!" Some of us want it so much that we even arrive earlier than expected! When we're infants, we want to explore our worlds, and we crawl around, hands out, looking for new adventures while under the watchful eyes of mom and dad. When we're toddlers, we're running around and going for broke -- much to mom's dismay as the contents of the china cabinet suffer some damage. When we're children, we relish the freedom of flying around our neighborhoods on bikes, skateboards and rollerblades. Or we run with ecstasy, our hearts pumping blood and our lungs filling with air. And when we're teens? Of course, there's that place known as license nirvana. And the apex of independence? College. Ahh: FREEDOM.

As we age, of course, independence takes on different hues, staggering in their colors: financial freedom, the freedom to start a family, the freedom to change careers, the freedom to carve out our own niches. But, truth be told, we're pretty well occupied with the one freedom from which all other ones seem to descend, and that's financial freedom: Do we have enough money/freedom to buy a house? To have kids or even pets? To buy a new car? To get a degree?

We never really think about physical freedom or independence.

Until it's threatened by something like RA.

When you have to ask someone to open bottles or cans for you or ask someone to help you get dressed... when you have to use canes or braces so that you can get where you need to go... when you have to ask someone in the grocery store to reach up and get an item for you because you can't stretch that far.... Well, when things like that happen, you think a whole lot about physical freedom and independence.

On my best days, when I think about independence, I have to say that I'm thankful for the newer medications that help me have a shot at slowing the progression of this shitty disease and extending my freedom. I'm thankful for the independence I have to write this blog and help create a sense of community, so that those of us living with RA don't feel so alone. I'm thankful for the medications that help to control my pain so that I can eke out a little more activity and thus, freedom. I'm thankful for the people who, when I am confronted by what appears to be a limitation, reach out a hand to help me, thus making that limitation less limiting than it might otherwise be.

So, yes, this 4th of July, I'm celebrating my independence. I hope that you, too, are able to celebrate yours.

Control vs. Acceptance

In the dedication of one of his books on cognitive-behavioral therapy and anxiety disorders, noted psychologist David Barlow wrote the following: "To my children. May you retain your illusion of control."

May you retain your illusion of control.

Although I last read that book some twenty years ago, its dedication has remained with me, almost haunting me in its simplicity and its complexity.

I always knew from an early age that I did not retain complete control of my life. Divorces, deaths, and multiple moves over which I had no influence or say taught me that sometimes, you have to roll with the punches. You don't necessarily have to like them, but to survive, you've got to roll with them.

Of course, I did believe that there were certain things over which I did, in fact, have control: things like whether I ate my lunch, whether I did my homework, where I kicked the kickball, whether I ran or walked down the hallway, how fast I threw a pitch....

You see, mostly, I believed that I had control over my body and what I did with it. Oh sure, there were little incidents in which I temporarily lost control -- a sprained ankle and a trigger thumb, for example -- but nothing significant from which I wouldn't eventually recover and bound up joyfully.

It's pretty safe to say that I believed that at least my body, if not my life, was easily within my sphere of influence.

That belief wavered slightly when my mother developed melanoma about 15 years ago. Cancer, after all, represents cell growth that is literally out of one's control. If it could happen to my mother.... However, since the melanoma (thankfully) was discovered early, my brazen belief in bodily management solidified once more. In other words, I retained my illusion of control.

It wasn't until I was diagnosed with RA that my "reality" was revealed to be a virtual one, and I finally recognized that more frequently than we know, even our own bodies can be outside our spheres of influence.

It was a sobering realization, but not a hopeless one. Rolling with the punches still works, as does struggling to once again maintain or even expand my sphere of influence. The trick for me is to find a balance between control and acceptance. When I try to control everything, I quickly become "delusional." But when I accept every bit of crap that's flung my way, I just as quickly become helpless and hopeless. Yes, balance is the key.

And balance definitely is something that people living with RA need to learn. Because our lives hang in it.