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!

Reunions

Yesterday was my 25th high school reunion, back in NJ. I chose not to attend. In fact, I've never attended a single reunion -- high school, college, graduate school, or otherwise.

I'm not sure why that is. I'd love to say that it's because I'm a person who's grounded firmly in the present, but that would be a lie. Because of my RA, I find that I play the equivalent of "Life Twister," with one foot in the green past -- remembering and grieving the things that "used to be," one foot in the red present -- thinking about and acting on what I can do now, and one arm in the yellow future -- uncertain of what I'll be able to do in years to come.

Reunions would require me to play an entirely different game of Twister -- one I'm not sure my physical (or psychological) abilities would allow. I mean, think of all those hands that would have to be shaken. Eek!

Certainly, I'm interested in how people's lives turned out. And if someone could just churn out a booklet containing a few lines about how each of the 651 members of my graduating class turned out, I'm sure I'd devour it greedily.

Since that will never happen, however, I'll just have to rely on my childhood BFF for a report on our reunion.

It's a lot easier than playing a new game of Twister.

One Step at a Time

One of our cats, Patch, is a tiny thing -- maybe six to seven pounds. Because she's so small, people often mistake her for a kitten.

But the truth is that she's far from kittenish: She's sixteen and a half, and recently, she has been showing her age. She sleeps more, eats and drinks less, and, most noticeably, has been a bit wary of making the graceful leaps onto the high and forbidden places that made her such a cute nuisance in her youth -- places like counter tops, vanities (She has a rather repulsive fascination with the faucet. I call it "repulsive" because we, too, have to drink from said faucet.), bookcases, refrigerator tops, and cabinet tops.

One especially notable place to which Patch now has trouble ascending is our bed. Preferring to spread as much fur as possible on Eric and me, she delights in crashing out on the bed most of the time. The problem is, "crashing" has become the operative word lately.

Sometimes, she just can't quite make the jump from the floor to the bed. And so she crashes back onto the floor. While this might be funny to view while you're sitting against the headboard and can see two little ears repeatedly poking up and down from the end of the bed, it isn't funny when you realize that it's a significant sign of how much she is aging.

In order to help Patch out, we purchased "pet stairs." You know what I'm talking about, right? Those faux-fleece little steps designed to make it easier for your pets to go where they're technically not even supposed to go. Yep, we bought those stairs and placed them at the foot of the bed, where the wee one could use them to ascend to her throne.

Despite training, however, the damned cat refuses to use the stairs. She'd rather do it on her own, thankyouverymuch, crashes be damned.

I can understand now why people often say that their pets are their "familiars." Because it sure seems as if that stubborn, aid-refusing cat is a lot like her owner. Only, her owner has the added benefit of a much larger brain; thus, for the owner, the adjective "stupid" should be added to that list of characteristics. 

In my defense, however, I have to admit that these days, I am much more comfortable accepting help and making concessions to/for my RA. Have to move the couch to put up the Christmas tree? Eric will do it. Can't open some stupid plastic packaging designed to outlast even a nuclear detonation? Eric can do it. Can't lift a ton of groceries? Eric can do that, too.

Of course, there are times when I go all pig-headed, do something I shouldn't, and then am sorry for it later.

But gradually, unlike Patch, I am learning to use the stairs.

I hope you are, too.

Happy Thanksgiving, all!!

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."