RA (Rheumatoid Arthritis) Sucks

RA and Vegas, Pt. 1

So, Eric and I are in Las Vegas, frolicking among the craps tables, roulette wheels, slot machines, and the elderly, scooter-riding, oxygen-wearing, smoking emphysematics who play said machines ("One time, baby. One time!"). Oh, and the drunks (of whom I no doubt will be one at some point during this trip). And the lights. And the noise. And the regular shows. And the "special" shows. And....

I know it sounds like I hate Vegas, but the truth is that I love it. I really do. I get a thrill every time I'm here. Put some dice or cards in my hand and I'm ready to spew chips around and gamble.

Gambling. We hear time and time again that "all of life is a gamble." And while that aphorism is true, perhaps no one recognizes its truth more than those who live with chronic illness.

With few exceptions, wasn't it a roll of the dice, a turn of the card, the placement of a ball, the draw of a number, that got us where we are today -- living with RA? I mean, sure, maybe there's some unknown or unrecognized genetic component that might have nudged us ever so slightly toward this diagnosis, but metaphorically speaking, it's as if we were standing at the roulette wheel and "won" (RA) with our all chips on 29 Black.

So here we are with RA. And suddenly it's as if we're actually living in Vegas. Think about it. Vegas is always "on," always in overdrive, a blur that 's pregnant with excess. And so are our immune systems: They're lit up with activity, trying to soak up every bit of energy that they can.

The problem, of course, is that in the case of RA, what happens in Vegas doesn't stay here. We get tired of it all, and we want to go home. We want peace, quiet, tranquility. And so we return home to what's familiar.

But like a bad dream, Vegas follows us there. Having arrived, we place quarter after quarter into the machine in a frantic attempt to appease the bright, turning, noisy clamor within: NSAIDS, anti-malarials, antibiotics....

Will any of it ever stop? Will we ever hit a jackpot?

RA and New Friendships

So, at 43, I am middle-aged.

Middle-aged and new to Chicago... and thus, looking for new friends. The question is, how do I go about finding what I'm seeking?

If Eric and I had kids, it would be easy to meet people: kids are a great ice-breaker and friendship-builder. If I were single, it would also be fairly easy to meet people through social events designed specifically for the unpartnered. If Eric and I were employed outside the home, we might also have an easier time of it, since we might find some people from the office to hang out with. And so on. 

But the thing that makes it most difficult for me to meet people and develop friendships right now is my RA. Why is that?

Well, if I were relatively healthy, Eric and I would join some sort of sports league in the city; tons of them are available. Softball, volleyball, kickball, dodgeball. These are just a few of the fun things I've done in the past (I used to be really athletic) and would love to do now... but can't. Because of my RA.

In addition, there are some other non-sports things in which I'm interested. Like making stained glass windows or doing ceramics and pottery or learning woodwork. But again, I'm limited by my RA.

So, I'm now connecting with some people online (it's an awful lot like using Match.com to try to find friends) and I'll be meeting a few of them in person shortly. But so far, I have to admit that haven't told any of them that I have RA.

I know why I haven't told them. Do you?

A Long Day's Journey into Night

Recently, Rheumatoid Arthritis Warrior has completed a series of posts on whether a person should delay treatment for arthritis. In one of her posts, she cites information from the University of Kansas Hospital's site:

Studies have shown that damage to joints occurs in 60% of people with rheumatoid arthritis within 2 years. Because irreversible joint damage, chronic pain, and long-term disability can occur if rheumatoid arthritis is not diagnosed and treated early, it is now recommended that a person with rheumatoid arthritis see a specialist in joint disease (rheumatologist) within the first 3 months after symptoms appear.

Now, I don't think you'll encounter a rheumatologist today who wouldn't suggest early treatment with a diagnosis of RA. "Early and aggressive" are the new catchwords in rheumatology (okay, along with "biologics").

Early and aggressive, early and aggressive, early and aggressive MY ASS! Here's why:

How long did it take you to get diagnosed? While you painfully struggled hither and yon to various doctors in an effort to figure out "what ailed you," didn't it feel like you were waiting for the Apocolyse or the Second Coming or a truly excellent version of Windows to appear?

Let's face it: Early and aggressive treatment rarely happens because delayed diagnosis is the norm rather than the exception.

I'll use myself as an example.

I first started having severe aches (but no inflammation) in my hands and feet shortly after a hysterectomy in January of 2006. (Damned uterus.)

My PCP thought it was just tendinitis and prescribed naprosyn, which didn't help. I subsequently was referred to a RD. He wasn't sure what it was, but gave me Mobic, which didn't work. My blood tests and x-rays came back normal and he was stumped. So he diagnosed me with Fibromyalgia and gave me gabapentin (which also did nothing). During this time, I just continued to have excruciating pain in my hands and feet.

Nine months later, we moved to the Chicago 'burbs (i.e., Stepford). By this time, I was pretty sure that I had RA, even though my bloodwork remained normal. At any rate, I saw a second RD, who also insisted I had Fibromyalgia, not RA. So he put me on Cymbalta. You'll be unsurprised to learn that the Cymbalta gave me less than stellar results. Subsequently, he gave me some trigger point injections because my muscles were tight. Still nothing. Now, during the year that I saw this douchetastic doctor, he also ordered two different sets of ultrasounds, which he claimed revealed only inflammation. Finally, I decided I'd had enough with Mr. Sharpshooter and sought out yet another RD.

As part of that process, I requested my medical records from the aforementioned Dr. Douchiness. When I read them, I was absolutely astounded. Why? well, first of all, he diagnosed me with dysmenorrhea. For those of you who are unfamiliar with the definition of this term, it means menstrual cramps. Holy shit! I have to say, I was really impressed that he apparently was able to provide me with a new uterus without my even being aware of it. I mean, clearly, this deserves some sort of write-up in a journal, no? It's nearly a freaking miracle! (And as an aside, Eric and I are really glad that I didn't get pregnant during this time, since we weren't using protection. We already have six cats, and I'm not sure we can afford another mouth to feed....)

Second, the ultrasound reports revealed not just inflammation, but also pannus and bone erosions. Pannus only occurs in conjunction with RA. I clearly had RA, not Fibromyalgia. So why the fuck wasn't I receiving treatment for RA?

By this time, I'd had my symptoms for over two years. My third RD looked at my negative bloodwork, my negative x-rays, my positive ultrasound and considered my pain, and quickly announced, "Well, you have Rheumatoid Arthritis."

It subsequently took us about a year to find a treatment that works. And during that time, I've developed bone thinning and erosions that now can be seen on regular old x-rays.

So there we go: It took two years and three doctors to diagnose me. Granted, my case wasn't easy. But my case is representative of about 30% of the RAers. How much does that suck?

And yes, I'm bitter about it. Because I've also developed extra-articular (i.e., non-joint-related) complications from my disease in the time that it remained uncontrolled, the most painful being neuropathy.

So, health information sites can say all they want about the importance of early diagnosis and early and aggressive treatment, but until rheumatologists listen to themselves (and their patients), there's damned little that's going to be done about it.

As an aside.... I'd love to see a new study done that examines the relationships between length and type of symptoms, test results, length of time required for RA diagnosis, type and number of treatments utilized, and length of time required before successful treatment is achieved. It would have to include numerous other variables, of course. But I'll bet the results would be shocking and just might serve as a wake-up call to the rheumatology world.

Okay, I'm done pitching a fit. At least for now.

Zebras, Giraffes and Equations

So often, people describe and judge the world in the starkest of terms: black or white, good or bad, right or wrong. Increasingly, then, it seems that we have become a society of antonym addicts.

To be honest, while I hold some essential core values (and I can get a bit riled up if they're transgressed), I'm not really an antonym kind of person. But I've sometimes been envious of people who are. After all, there is comfort and security in knowing exactly where you (and the rest of the world) stand.

And I know that some people talk about shades of gray -- and though I think the concept of non-absolutes is a good one, I don't find it useful or authentic in describing my day to day experiences. In examining myself, for example, I know that sometimes I can be incredibly good-hearted and generous. But other times, I can be a complete douchenozzle. So am I black or white? Or gray?

I think the most accurate description of myself is that I'm a bit like a zebra: streaky or striped, with black and white and even some gray. And a few bald patches here and there, too.

Or maybe I'm patchy, like a giraffe?

I don't know.

What I do know is that since I've been diagnosed with RA, I have become more streaky/striped than ever. Far from being certain about who I am and who/what the world is all about, I'm actually developing even more stripes and streaks in my fur/world. In the normal world, for example, F=ma (Force equals mass times acceleration): This is a scientific certainty. But in my streaky and swirling and patchy world, F=ma-f (Force equals mass times acceleration minus fatigue). Now, I find that the streaks, stripes, patterns and equations are always in flux for me.

Because I have a background in science, I find these changes to be acutely unnerving. But so would any nonscientific person. I mean, it wouldn't take a genius to figure out that something unusual was happening if two atoms of hydrogen and one atom of oxygen combined to form not water but alcohol (though some of us might appreciate that....).

It is said that the only constant is change, and I suppose that's true.

But I wouldn't mind a little consistency once in a while.

"Consistency is all I ask / Give us this day our daily mask."
-Tom Stoppard, Rosencrantz and Guildenstern are Dead

I am the Walrus...er...Whale

Well, I hate to sound all depressing and depressed day after day. Because I'm not. It's just that when I occasionally have Deep Thoughts (courtesy of Jack Handey) about RA, they do tend toward the Dark Side ("Luke, I am your father!").(Please note that Deep Thoughts on my part are rare. Being Deep gets in the way. I'm much more inclined to be shallow and petty.)

I think this darkishness is genetic; I blame my dad. (And I definitely can do that, since he really doesn't do the whole interwebs-thing and can offer no self-defense to my obviously truthful assertion.) I'd describe him as a really morose guy, kinda Eeyore-ish. He's got that whole cop-attitude going on -- mostly because he's a retired cop. In fact, when I was growing up, the only things that made him really happy were writing tickets and arresting people.

At any rate, I am not a beautiful flowers and soft bunnies kinda person. I'm more of a "let's beat this sucker over the head and see if we can get it to submit" kinda person.

Which is why I find RA so damned frustrating. I mean, I'm certainly not going to take it lying down. But on the other hand, I have to keep beating it over the head every couple of days just to keep it from veering too much off course. Not only is this exhausting, but it's also unnatural.

RA is a lot like the mass strandings of whales we periodically read about in the news. In strandings, some really intelligent mammals (not too distantly related to us) seem to have misread or perhaps misunderstood migrational charts that have been imprinted during centuries (if not millennia) of cellular memory. In RA, our bodies have misread or misunderstood cellular or genetic immunomodulatory effects that have been fine-tuned over thousands of years of evolution. And so we all lie there on the beach -- confused, insistent, thrashing about, and sometimes even refusing help. At least on our bad days. On our good days, we accept the help that's offered us in the forms of gentle nudges out to sea and blocks of TNFs, and we continue on our separate ways.

So when you feel that tempting though unnatural urge to push yourself up onto some glistening white sand, feel free to give life the fin and just keep swimming.

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.

Wonder Woman

Well, my nine year-old nephew has been with us (the pudgy, lame-ass, child-free, city-dwelling, forty-somethings) now for a week. During that time, we have done the following:

1. Gone to a Cubs game (Cubs loss)
2. Gone to play cornhole in our cornhole league
3. Gone to the top of the Sears Tower
4. Watched "Twilight"
5. Gone to Dave and Busters to play pool
6. Purchased and played Guitar Hero for the Wii
7. Gone to the Lincoln Park Zoo
8. Did a Segway Tour (we fudged his age)
9. Gone to another Cubs game (another Cubs loss)
10. Gone to Six Flags Great America

Tonight, we are going to Dave and Busters again.

Of all of these activities, I am the most proud of/impressed with the way I kept up with my husband and nephew at Six Flags Great America. That was seven and a half hours on my feet, with something like eight rides (seven of them rollercoasters) in there. I only had to sit out a few rides toward the end. But holy crap! For someone with RA, that's outstanding -- kinda like walking in heels! Of course, I paid for it today, having been sore, tired, and bedridden all day. But still... It was a little bit like having the old me back. Bittersweet. I hope one day Joey will understand and appreciate the effort and energy I put into his visit. He leaves on Thursday afternoon, and after that, it will be back to posting as usual.

My hip labral tear surgery is scheduled for August 14th. Woo hoo!

RA Wars: Chicago vs. NYC

From September of 2006 until March 31st of this year -- two and a half looooong years -- Eric and I lived in the suburban cornfield known as Geneva, IL, some 40 miles west of Chicago. It was Hell. It was the Stepford of suburbs, with our neighborhood women's group inviting me to Bunko nights (I'm not exactly sure what this is, but I am sure I'd have had a better time playing poker with the guys.).

Mind you, I don't mind the 'burbs (Eric and I moved from a NJ 'burb that was 10 miles from Manhattan) -- as long as a major city remains close by and easily accessible. But the connection between Geneva and Chicago was tenuous at best: forty miles and about an hour and twenty minutes' worth of travel by train, and even longer travel by car. 

Anyway, in April of this year, we decided we'd had enough, and moved from Geneva to the actual city of Chicago, and have been loving it ever since.

Chicago is an interesting sort of place compared to Manhattan (in which I lived for three years before my marriage). It's a good deal cleaner; the people generally are friendlier; and political patronage exists on a scale I'd never before realized. Speaking of people.... A lot of people who live here in the city seem to be native Illinoisans. Most of them have trucked in from the surrounding 'burbs after deciding that life in the city is more fun. In fact, some of them seem to have known each other from way back when. So I wouldn't call Chicago a "worldly" city, exactly.

At least not compared to NYC. NYC is a city of strangers, just bursting at the seams with a worldly flavor provided by immigrants and those people who are looking to build a dream -- those people who heard about all NYC has to offer and thought, "That's my chance. I'm going to take it."

But it occurs to me that discovering you have RA is a bit like being forced to take up residence in NYC. Because everyone is from somewhere else -- even the natives. And in NYC/RA, there's no such thing as an outsider because frankly, everyone is an outsider.

Sure, maybe a few of us have previously become familiar with RA because we've had friends or relatives who have the disease. But nearly all of us start out the same: strangers to the disease and to each other.

Blogs like this one (and a couple of arthritis forums) try to help us create communities more like Chicago, where there is a sense of belonging. I think they work because at heart, most of us are not transients; most of us spend our lives looking for some sense of permanence. Ironically, now, through RA, we've found it.

Update

Angie from RA and Me asked me about my hip arthrogram/MRI. The arthrogram itself went pretty well: like most of us, I can basically stand a buttload of pain, so I didn't mind the discomfort. And during the MRI portion, I actually fell asleep and had a hynogogic jerk, so they had to repeat a portion of the test. Can we say "moron?"

Anyway, I got the results yesterday, and I have a 2.6 cm tear on my labrum. I also might have some slight impingement caused by a bulge on the head of my femur. Anyway, I'm going to have surgery -- as long as the insurance company approves. I was told that I'd be on crutches for 6 weeks. I'm just kinda hoping that I'll be more-or-less okay by the time of my Disney World trip in late September (I'm a Disney geek), since I'm supposed to be meeting some friends there. And I definitely want to have the surgery before the Chicago winter hits!

My 9 year-old nephew descended upon us last night, so the next nine days will find me trying things like Extreme-Theme-Parking for People Living with RA; Extreme Museum Incursioning for People Living with RA; and so forth. I can't imagine how creaky I'll be! Vicodin, here I come. Oh, and Celebrex, too.

Joey watched me give myself an Enbrel injection last night (pre-filled syringe), and I thought the poor kid was gonna pass out. Oh well. It's good to have him around.

I'm going to try to update at night when he's (hopefully) sleepy, but I may wind up passing out before he does. Ah, youth....

Today's schedule: Cubs game in the rain (he WANTS to go, dammit!) and cornhole league in the evening. Because you haven't had a true midwestern experience until you've been cornholing.

Have fun, all!