RA (Rheumatoid Arthritis) Sucks

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!

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?"

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."

Incident

So, last night, I experienced an incident that involved the following:

• crutches
• many pills
• an extended-height toilet seat with grab bars, and
• a cat.

Just let your imagination take you there. Got it? Good. Because that's what happened.

Needless to say, said cat only has eight lives remaining.

And I want vodka. Lots and lots of vodka.

That is all.

Have a good weekend.

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.

OOO - Hip Surgery Tomorrow

Well, I guess this is my official "Out of Office" notification, since I'll be having hip surgery tomorrow. So, I have no idea how long I'll be out of commission. Guess we'll see.

I just can't wait to start my Enbrel back up, so I hope I heal quickly!!!

Meanwhile, everybody have fun!

Kim

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.

"Sorry" Seems to Be the... Easiest... Word

Back when I was a mere pup, Elton John composed a song entitled "Sorry Seems to Be the Hardest Word." Now, I have to admit that I never was a fan of this song: It always struck me as an incredibly maudlin piece of dreck (though, being nine, I wouldn't have used those precise words at the time). Plus, Sir Elton's near-falsetto made it an incredibly difficult song to sing.

Up until about 10 years ago, however, I would have agreed with Elton's sentiments. I had an incredibly difficult time apologizing and saying "I'm sorry" -- primarily because I viewed an apology (as opposed to expressing sympathy; I'm not referring here to the expression of sympathy [as in "I'm sorry for your loss"]) as an admission of wrongdoing.

This view no doubt was related, in part, to my childhood experience of my mother forcing me to say I was sorry for committing some egregious sin -- when I was not, in fact, sorry for having committed said transgression. For example, if I whacked my sister on the head with a toy, I must have done it because she deserved it. Why would I be sorry for that? Being forced to say "I'm sorry" when I wasn't sorry merely left me resentful... and raring to trespass again!

So, "I'm sorry" never really came easily to me when I was a child.

When I was in my 20s, I detoured around this expressional difficulty by learning to say, "I'm sorry you feel that way." Now, this clearly was a "cop-out" -- an expression of sympathy cleverly disguised as an apology. I was not sorry I had acted in a certain way, after all; I merely was sorry that the offendee had taken offense at my offense. You see? And that little sleight of words worked wonders for a while.

It worked until I got a job in... well, let's just call it "human resources." Saying anything more would expose my secret identity, and we can't have that, can we?

Anyway, my "human resources" job caused me to run around willy nilly; I was pulled in so many different directions that there was no question I disappointed a lot of people a lot of the time. Suckage -- both for them and for me!

And yet, something interesting happened to me in my HR position: I wound up genuinely having to apologize -- to say "I'm sorry" and mean it: "I'm sorry I'm late." "I'm sorry I won't be able to do that for you." "I'm sorry I disappointed you." "I'm sorry I wasn't able to get those figures for you."

I'm telling you, it was like I had a damned parrot on my shoulder, demanding, "Polly want an apology [squawk]. Polly want an apology [squawk]." And I'd dutifully pony... er... parrot up the apology.

You could almost say that apologizing became a habit for me. And it wasn't the worst habit I could have developed. In fact, while I initially resisted apologizing, I eventually came to admire its charms. Why? Well, I discovered that apologizing and accepting responsibility for a fuck-up really and truly disarms people. It is a significant social lubricant that helps people get along. And, it turns out that it cost/s (me, anyway) so very little.... How unexpected.

Since I'm no longer in my HR position, however, I find that I'm becoming annoyed with the whole apology habit. Why? Because I still find myself apologizing a lot -- but mostly for various things of which RA is the root cause: "I'm sorry, but I'm just so tired right now." "I'm sorry. My feet are really achy right now." "I'm sorry, but I just don't think I can." "I'm sorry, it turns out I won't be able to make it after all."

My husband keeps telling me, "Kim, you never have to apologize for being sick." And I really appreciate his attitude, and I love him for it.

But it's hard not to apologize for the shit that RA puts us, our families, and our friends through.

Just as it's hard not to get angry for having to apologize in the first place.

RA sucks.

A Horse Is a Horse....

A horse is a horse, of course, of course
except when by "horse" you meant "hoarse," of course
and no one can talk when they're hoarse, of course....

So, the latest addition to my RA universe is the appearance of hoarseness. Hmm... I might better have said that the latest subtraction in my life is the occasional disappearance of my voice. After all, that's kinda what RA does: it slowly takes things away. Things like dexterity, mobility, energy....

There's no question that I can see it all happening, despite the fact that it's a painful war of attrition rather than a single-strike attack. I can see it in the way I no longer open jars; in the way I use my arms rather than my hands to hold doors open; in the way I can't play 18 holes of golf any longer; in the way that I become grumpy after 4 hours of activity; in the way that I limp when I first try to walk; in the way that I ache every single day; in the way that I find myself becoming obstreperous about taking medications....

Yes, when I look back over the past couple of years, I can see what I've lost to RA.

And now I seem to be losing my voice. 

I know (because I'm smart and I've looked it up!) that what this means is that RA is affecting the cricoarytenoid (how's that for an SAT word?) joints in my larynx, thus changing the pitch and tone of my voice. Apparently, up to 30% of RA patients may suffer from this malady, which (usually) is not dangerous -- just a major pain in the ass (so to speak).

Now, I must confess that I am an extrovert: I talk when I shouldn't talk, say more than I need to say, and converse and communicate with conviviality. But lately, crikey (oooh -- bad pun!)!! I've been chattering a whole lot less because it is becoming difficult, at times, to get the damned words out. 

And whereas previously, words represented my livelihood, now they represent nothing less than my life. I use words to articulate my thoughts, feelings, and ideas, and to help me make sense of the senselessness of RA.

And thus, while I may occasionally lose my physical voice, I cannot and will not lose my VOICE -- that part of me which gives expression to my life and my soul.

So must it be with all of us who have RA.