RA (Rheumatoid Arthritis) Sucks

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.

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. ;)

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?"

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.

Happy "Independence" Day

Today (7/3) marks the official (i.e., legal) celebration of Independence Day.

It's also the anniversary of the deaths of two of this country's great founders, Thomas Jefferson and John Adams. Both died on July 4, 1826, and among Adams' last words were, "At least Thomas Jefferson survives." Ironically, unknown to Adams, Jefferson had died earlier in the day.

Anyway, on that extraordinarily happy note, let's talk about independence and RA.

It's pretty clear that when people talk about chronic disease in general, what they fear most is pain. And that makes sense. What numbnuts ever wants to be in pain? (Well, okay, let's just admit here that certain people find pain sexually stimulating [13 year-olds, please cover your eyes], but I'll bet they'd change their minds if they had to experience said pain chronically, 24 hours a day. "Permanent electrodes to the... Why, no, but thank you for the generous offer.")

The second thing that people seem to fear with regard to chronic disease is the loss of the very thing we celebrate today: independence.

Think about independence in general. We crave it from our earliest times. In the womb, we kick and move about, eager to be released from its safe confines: "Mom, can you hear me? Let me out, dammit, now!" Some of us want it so much that we even arrive earlier than expected! When we're infants, we want to explore our worlds, and we crawl around, hands out, looking for new adventures while under the watchful eyes of mom and dad. When we're toddlers, we're running around and going for broke -- much to mom's dismay as the contents of the china cabinet suffer some damage. When we're children, we relish the freedom of flying around our neighborhoods on bikes, skateboards and rollerblades. Or we run with ecstasy, our hearts pumping blood and our lungs filling with air. And when we're teens? Of course, there's that place known as license nirvana. And the apex of independence? College. Ahh: FREEDOM.

As we age, of course, independence takes on different hues, staggering in their colors: financial freedom, the freedom to start a family, the freedom to change careers, the freedom to carve out our own niches. But, truth be told, we're pretty well occupied with the one freedom from which all other ones seem to descend, and that's financial freedom: Do we have enough money/freedom to buy a house? To have kids or even pets? To buy a new car? To get a degree?

We never really think about physical freedom or independence.

Until it's threatened by something like RA.

When you have to ask someone to open bottles or cans for you or ask someone to help you get dressed... when you have to use canes or braces so that you can get where you need to go... when you have to ask someone in the grocery store to reach up and get an item for you because you can't stretch that far.... Well, when things like that happen, you think a whole lot about physical freedom and independence.

On my best days, when I think about independence, I have to say that I'm thankful for the newer medications that help me have a shot at slowing the progression of this shitty disease and extending my freedom. I'm thankful for the independence I have to write this blog and help create a sense of community, so that those of us living with RA don't feel so alone. I'm thankful for the medications that help to control my pain so that I can eke out a little more activity and thus, freedom. I'm thankful for the people who, when I am confronted by what appears to be a limitation, reach out a hand to help me, thus making that limitation less limiting than it might otherwise be.

So, yes, this 4th of July, I'm celebrating my independence. I hope that you, too, are able to celebrate yours.

"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....