RA (Rheumatoid Arthritis) Sucks

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!

Well, I'm Back....

So, I've had a rough couple of months. I won't go into all the crap that has surfaced (because it IS crap, and no one should should be made to smell, see, or step in crap if it can possibly be avoided. I mean, think of all those intricate patterns on the bottoms of our sneakers....).

I will, however, detail an aggravating RA-related issue that finally was resolved as of yesterday.

When last I saw my RD, a few weeks ago (for general and post-surgical follow-up), I had complained of more pain than usual. Consequently, she wanted me to have an ultrasound done at the great-and-highly-vaunted Northwestern Memorial Hospital here in Chi-town to determine how well the Enbrel was working. My RD frequently sends patients to Northwestern for US's, since "they're the best and they know what they're doing.")

(Side note: I'd been off the Enbrel for the surgery, and it was possible that I still hadn't reached a therapeutic level.)

Now, it's important to remember: I've had two other US's done previously. The first revealed inflammation; the second, inflammation and erosions. However, they were read by a group out in CA with whom my RD isn't familiar.

Anyway, I went to GHV-NMH (that's "Great-and-Highly-Vaunted Northwestern Memorial Hospital) and had the US done. The radiologist said, "I'm not seeing any evidence of RA. No inflammation, and any erosions are osteoarthritic." 

"So do I have RA?" I asked.

"I couldn't tell you that," he said. "You'll have to talk with your rheumatologist."

"Well, fuck me sideways," I thought. "Maybe I don't have RA?!?! I mean, since I've always been seronegative, I've always had this nagging doubt about the diagnosis anyway. Of course, even if I don't have it, I'll have to figure out what in hell I DO have...."

I was seriously perturbed.

When I got home, I called my RD. "I don't understand," she said. "Even if you had no inflammation, the erosions should still be there and visible on the US. Erosions never go away."

Subsequently, I managed to track down the actual films of the last Non-GHV-NMH US (wow, is that an acronym, or what?) and sent them to my RD, who sent them along to GHV-NMH radiology to ask them to do a comparison between those films and their films.

By the time I arrived at my RD's office, she still hadn't heard anything from GHV-NMH about film comparisons. She had, however, received the US report, which stated "Completely normal US."

We did some brainstorming and went to review some of my xrays. She saw what she thought was bone-thinning in my feet, and thinning and erosions in my hands. But she wanted to check it out with their radiologist -- if he was on duty.

She returned several minutes later.

"He confirms what I saw. So, you do have RA."

Subsequently, we talked about my meds and our respective poor attempts at dieting (sigh).

I'm continuing on the Enbrel since it seems to be keeping the inflammation at bay. But I'll still have bad days, when the pain and inflammation are present. And I'll always have the erosions, which can be painful no matter what.

So I guess this is as good as it's gonna get.

And I'm okay with that.

But what about GHV-NMH? Doesn't it suck that an enormously well-respected institution can screw up so badly that they can't see on a more-sensitive US results that are evident on xrays?

"What are you going to do about that?" I asked my RD.

"I don't know. I guess I'll have to wait to see how they respond to my request for a comparison."

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.

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.

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!

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.

Hip Arthrogram/MRI Today

I'm getting my hip arthrogram/MRI today. Eric has to take me for it, since they've told me I won't be able to drive afterward. They also told me I'd have two days of pain afterward. So, depending on my level of grumpiness, I may not be posting. I mean, my usual level of snark is fine, but when I have a snark attack for reasons related to pain, it can be pretty ugly.

Just in case I don't make it back in time, I hope everyone has a great 4th!!

"Fix"ation

So, I had a visit with the orthopod about my hip.

Based on my xrays and symptomotology, I've received a tentative diagnosis of FAI: Femoroacetabular Impingement, which sounds a lot more complicated than it actually is. In my specific case, it looks as if some of the cartilage may be chewed up. This mastication appears to be caused by a femur (thigh) head/ball that is too big and continuously rubs/depletes/tears the cartilage in the sacroiliac (hip) joint.

Ha -- I've got big balls!

Anyway, I have to have a hip MRI/arthrogram next week to try to confirm the diagnosis. When the hospital called to schedule the test, they told me that I'd need to have someone drive me home afterward because the arthrogram is typically so painful that people are unable to drive themselves home. You know, though, this is my thinking: I am not a pain wimp. I am well acquainted with menstrual cramps, ovarian cysts, migraines, and RA: my tolerance for pain is pretty damn high. Plus I have big balls. Will I really need someone to drive me home after the procedure?

The interesting thing in the midst of all of this is that there is no evidence of arthritis in my hip. Yay. If left untreated, however, FAI usually develops into OA of the hip. Boo.

So what's the treatment for FAI?

Surgery.

So I find myself sitting here and thinking, "Please, God, let me have FAI.... Please, let it be FAI." Why? Because it's fixable. And so much of what I suffer from with RA is not "fixable."

How ironic is it that I'm sitting here wanting to have surgery -- having a fixation on what's fixable? On one level, it's undoubtedly warped. But on another level, I'm guessing that other people who suffer from chronic illnesses might think my "fix"ation is perfectly normal....

"Those" People

Back when I was 18, this was how I imagined my life would be now, in 2009:

I'd be 43, gorgeous and slender, with a full head of hair marred only slightly by flecks of gray. My award-winning personality would ensure that I'd have an ever-expanding circle of friends who would bask in the glow of my charisma. With my student loans having been repaid (years earlier), I'd be a busy and successful reconstructive surgeon, happily married to another successful surgeon (perhaps a cardiac guy? Who knows? I was flexible.). Our house in the Manhattan suburbs would be filled with the sounds of dogs barking, children playing, and of course, a nanny screaming in the background.

But I never, ever thought I'd be one of "those" people.

You know the ones I'm talking about, don't you? Those people whose gaze it's sometimes difficult to meet. Or those people in whose wake follow whispers and looks of sadness, pity, puzzlement, or occasionally, even suspicion. Or those people who are greeted with the words, "But you don't look sick: you look GREAT!" Or those people whose conditions make other people think, "Wow. I'm glad I don't have what s/he has...."

But it turns out that, for better or for worse, I am one of "those" people.

Because I have RA.

I have a chronic, systemic, autoimmune disease that can cause joint deformity and bone erosion, cardiovascular difficulties, fatigue, excruciating pain, and even early death. And the treatments for said disease generally involve ingesting or injecting poisons -- yes, poisons -- that cause their own set of difficulties.

I've gotta be honest with you: This sucks, and sometimes, I get really pissed off about it. Generally, I'm not one of those people who placidly accepts inexplicable edicts of fate, circumstance, or whatever you want to call it, with sanguineness and equanimity. Instead, I tend to act -- to rage against the machine: I repeatedly push the on/off button, try to reboot or flash the BIOS, re-install the software, or occasionally even throw the damned computer against the wall.

For me, this fight is part of my identity as one of "those" people. Identity? RA as part of my identity? You bet. It affects me as much as my marriage does. It is an ever-present and familiar (if not welcome) companion on my daily walk. I know its taste, its smell, its touch, its reach. And at this point, I can no more throw it off than I can discard my identity as a wife, a daughter, an older sister, an aunt. Like it or not, RA beats a daily rhythm in my life, and it's here to stay.

Of course, that sounds an awful lot like acquiescence, doesn't it?

I guess it's probably most accurate to say that with regard to RA, I walk a sometimes drunken line between war and peace, between acceptance and rejection, between chaos and calmness, and even between hope and fear. And until there's a cure, I'll probably continue to weave back and forth, miserably failing my RA field sobriety test.

That's okay: After all, I'm one of "those" people.

You know the ones I'm talking about, don't you? Those people who somehow hold on to realistic hope in the face of realistic fears. Those people whose strength in adverse situations makes others think,"Wow. I can't believe s/he has RA." Those people who continue to strive for something... better, something... more.

One of "those" people?

You bet your ass I am.