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.

Pants Size = Extra Large

Well, I know it's after the holidays (which were LOTS of fun!). So I suppose that some weight gain was to be expected. But holy crap, dudes, I've gained close to 50 pounds since last January, when I first started Cymbalta, Lyrica, and Enbrel.

Yes, you read that right: Fifty freaking pounds!

My weight has yo-yo'ed by approximately 10 - 15 pounds throughout my life, depending upon time and circumstances. But previously,I could shed those pounds fairly easily by eating less and exercising more.

But this time, the weight won't come off. It's sheer torture, especially for a woman who absolutely hates shopping (except for shoes; I have an addiction to shoes.).

I'm keeping my caloric intake at 1000 - 1200 calories and doing aerobic exercise 40 - 50 minutes a day. 

The only thing to which I can attribute my bloomage is the drugs.

My Neuro Dude says that most people only gain a few pounds from Lyrica and Cymbalta (which I take for my peripheral neuropathy; the Enbrel I take for RA. But you already knew that.). He, of course, thinks that I'm underestimating my caloric intake. (I'm not. I can read the nutritional info on my Lean Cuisines just fine, thank you.)

It's just so damned frustrating. Am I going to have to choose between being in pain and being normal weight? Have y'all experienced anything like this?

Healthination, anyone?

So, the other day, I was paging through my cable guide, looking for something to watch on the boob tube. Those of you who use Comcast as your service provider may be accustomed to seeing advertisements that run across the bottom of each page of the guide -- things like ads for what movies are available On Demand, how to obtain a less expensive Disney World vacation, and so forth.

However, you can imagine my surprise when I saw "What is Rheumatoid Arthritis?" pop up at the bottom of the screen. I thought for sure that it would simply prove to be a pharma ad (and indeed, an Enbrel ad was wedged in there), but I was pretty darned shocked to discover that the nearly 10 minute video, hosted by Dr. Nancy Snyderman of MSNBC, described pretty accurately exactly what RA is, how it's diagnosed, and how it's treated.

You can find the video(s) here. Note that all three videos played together as part of this "public information campaign" / commercial.

My favorite part was when they described RA as an autoimmune disease that affects not just the joints, but the whole body.

What do you guys think?

Suffering

I'm an odd duck. My degrees are in chemistry, clinical psychology, and theology. The rational part of my brain always seems to be in conflict with my emotional and spiritual side. Although I've learned to live with this oftentimes uncomfortable dichotomy, I've never really been able to embrace it.

But that may be changing.

Recently, I've been working my way through an interesting book called "Without Buddha I Could Not Be a Christian" by Paul Knitter (who happens to be the Paul Tillich Professor of Theology, World Religions and Culture at Union Theological Seminary in NYC).

Because the book is so dense and the Buddhist concepts so unfamiliar to me (I was raised in the Jewish-Christian tradition), I find that I read and re-read just a single page at a time, and then need to go and do something else. I need the time to process and mull over the new insights that the book presents to me. Despite my natural tendency toward impatience, I am trying to honor the spirit and the teaching of the book in order to use what I can to better myself. And so, like Roethke, I "take my waking slow."

Anyway, early on, Knitter presents Buddha's first sermon, the contents of which are the "Four Noble Truths." The truths are as follows:

1. Suffering comes up in everyone's life.
2. This suffering is caused by craving.
3. We can stop suffering by stopping craving.
4. To stop craving, follow Buddha's 8-fold path (which basically consists of living a moral life by avoiding harm to others and following a spiritual path based on meditation).

So I tried to apply these truths -- or at least, the first three of them -- to my life as it exists with RA. And this is what I came up with:

1. My suffering comes from the pain caused by RA.
2. I crave/desire/want to be pain-free.
3. I can stop my suffering by quashing my desire to be pain-free. I just have to figure out how to do this. Hopefully, the book will point me in the right direction.

At any rate, from what I've read so far, it seems to me that serenity and a lack of suffering might be possible through "simple" acceptance of what is. I find the idea appealing.

I've been in pain for 4 years and been diagnosed for just two. So RA is still relatively new for me. But I wonder if acceptance gets easier and if suffering somehow loses some of its prominence and focus over time. That's my hope, anyway.

What do YOU think?

So. I've mentioned previously that I'm reading this werewolf book called "High Bloods" by John Farris. It takes place in about 20 or 30 years, I suppose, give or take a decade. Anyway, I was reading said book the other night when I came across this paragraph:

"In the dining room Paulo joined a tall, formidable-looking woman with his olive coloring. She wore all black: sweater, leather gloves, high-waisted slacks. She had been watching a TV monitor I couldn't see, but when Paulo spoke to her she turned and gave me a flat incurious stare. She said something to Paulo. He opened a pewter cigarette box on a table and lighted one, then took the cigarette from his lips and placed it between hers. Something wrong with her concealed hands; rheumatoid arthritis? The fitted gloves could only have worsened her pain. But maybe her vanity required them."

I've been letting this paragraph rumble around in my head for several days, and I still don't know what to make of it.

I have to be honest and say that when I read about the black gloves, my first thoughts were "burns or prosthetics." Not RA.

I could write about how offended I am by this paragraph, or how I don't know anyone with RA who wears gloves, or how I hope that in the next three decades they manage to find a cure for this freakin' disease. But mostly, I'm just... confused.

What are you guys thinking?

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!

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?"