RA (Rheumatoid Arthritis) Sucks

Mind over Natter

For as long as I can remember, words and languages have fascinated me. Over the years, I have studied or researched Akkadian, Aramaic, German, Greek, Hebrew, Spanish, and of course, English (including regional dialects and accents).

Boy, am I a goober -- a goober who loves words. Given that love, I can't help but be aware of the sheer power of words. "I love you" and "I hate you," for example, are sentences that are laden, heavy with meaning. So, too, is "I have RA."

Of course, the primary purpose of words and language is to convey information -- information about what we're thinking, feeling, seeing, believing.

There's no doubt that words are important. But are they the end-all, be-all?

Recently, on some RA forums, some people have argued just that with regard to RA and its management. For example, one individual recently suggested that doctors and pharmaceutical companies overuse negative words or phrases (such as "damage," "fatigue," and "disability") when they should be using more positive language such as "growth," "restored energy," "thrive," and "full life-style."

Well, I get that.

Except that when it comes to my health, ultimately, I'm a pragmatist. I'm a "just the facts, ma'am" kind of person. For example, I don't want, say, the potential side effect of projectile vomiting to be described as "the horizontal regurgitation of previously ingested liquids and foodstuffs." (Hmmm. I was trying to put a positive spin on projectile vomiting, but I'm just not sure I can do it.) I adopted the same approach with my nieces and nephew when it came to identifying their body parts: "That's your penis." "That's your vagina." Not "that's your wee-wee" or "that's your coochie."   

Personally speaking, for me, flowery or positively-spun words don't change my disease. When it comes to RA and my health, I want someone to give me the barebones facts -- facts which I can subsequently interpret in my own way, based on my knowledge, my feelings, and my experience.

Because ultimately, it's not words that give me hope. It's people that give me hope -- people like you and me. People who do all that they can do to fight against this shitty disease, its effects, its treatments' side effects, and the changes they cause in our lives. People with hair loss and braces and wheelchairs and extra lumps and canes and bone loss and bandaids from blood draws.

Yes, it's people who give me hope.

Word.

"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....

"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.

RA Hash Recipe

I'm aware that this issue already has been mentioned, discussed, and chatted about numerous times and in numerous places. I won't be covering new territory with this post. Still, when the mood arises or the circumstances present themselves, you sometimes have no choice but to gather all the ingredients together and make some (re)hash.

Having said that, here is my general recipe for RA Hash (a little dish that's whipped up when you try to explain RA and its effects on you / your life to a person unaffected by chronic pain / illness):

Ingredients
2.5 cups ignorance
1 cup apathy
1 cup incomprehension
1 tablespoon impatience
1 teaspoon pity or sympathy

Combine all ingredients, being sure to blend only until a stiff mixture is formed. Firmly press the unpliable mixture into an ungreased, fluted tart pan (to make later removal difficult). Set oven temperature to the "pain, inflammation, and erosion" setting. Bake until fatigue, frustration and irritability have set the mixture so that it has a hard crust. Remove from oven. Serve with a smile.

Obviously, I'm being a bit snarky here (sigh. This is a character flaw. Oh well.).

But what ingredients or elements would you add? How would you change the temperature? Is there something I'm missing?

Rheum-Apologists

I've been having a bad couple of weeks, feeling much more achy and fatigued than I've felt since starting ZEnbrel back in January. (The paranoid part of my psyche keeps wondering, "Is the ZEnbrel still working? Should I be worried?")

Of particular annoyance, however, is my hip. I feel pain in my groin, along the side of my hip, and in my glutes. It's painful enough that I've been walking with a limp for the past couple of days. Twice, it has even "given out" on me. Argh.

Anyway, yesterday, I finally decided it was time to call a doctor about it. The first decision to be made, however, was which doctor to call. Do I call my RD or my GP? Since I'm not sure whether this is RA-related, I gave my RD a call.

Personally speaking, I like my RD very much. After an initial sparring on both our parts, we respect and like each other. Professionally, though, I sometimes find her to be exasperating -- a Rheum-Apologist. Allow me to explain....

My Rheum-Apologist refuses to treat me for anything but my RA. She will not treat me for side effects of RA, nor will she treat me for side effects of any medications that I am taking for RA.

Thus, for example, when I was on Arava and it made me develop hypertension, she sent me to my GP for BP meds. When I developed neuropathy from my RA, she sent me to my neurologist for Lyrica to treat the neuropathy. (Of course, she also insisted that neuropathy is not a common side effect of RA; my neurologist seems to think otherwise. Moreover, it seems a common event on most of the RA forums on which I lurk.) When I became depressed as a result of the RA, she sent me back to my GP to treat the depression. When I developed severe and continual cold sores as a result of MTX treatment, she sent me back to my GP for Valtrex.

I find the whole "bumper-doctor" approach to be infuriating at times. On one hand, I understand that specialists basically want  to remain within the confines of their specialty and knowledge. On the other hand, it makes it that much harder for patients -- even motivated and knowledgeable patients like myself -- to maintain an adequate level of care. On one hand, I understand that specialists don't want to find malpractice lawsuits filed against them for practicing medicine outside their specialty. On the other hand, how are patients with chronic systemic diseases supposed to get adequate care and continue to lead productive lives (i.e., lives not spent at medical appointments)? On one hand, I get it. On the other hand, can't I catch a break?

What is the norm when it comes to rheumatologists and what they treat? And what is the appropriate expectation?

Initially, I made an appointment to see my rheumatologist about my hip. Later in the day, however, her assistant called an referred me to an orthopedic specialist.

Shocker, that.

Sorry. I Don't Mean to Skip Out....

It's just that the past couple of days have been hectic and painful.

I'll elaborate just a bit: We just moved to Chicago in April, so we're still in the process of selling our house out in the 'burbs. This is what we've been working on the past few days. I also have an additional health problem for which I receive PT; this takes up time. Finally, I've been flare-ish the past few weeks (including the neuropathy in my hands and feet); this makes me wonder whether the Enbrel is still working as well as if/when I should contact the rheumy.

So, anyway, sorry for the posting delays. But sometimes life becomes a little more complicated.

See you soon! I'm going back to bed.

Teach and Learn

My nine year-old nephew, Joey, will be staying with us in Chicago for a week and a half this summer. While I know that some people might view a visit from a nine year-old as a reason to groan, I'm pretty psyched about it.

After all, Eric and I (childless forty-somethings) lead fairly sedate lives. But a visit from an incredibly active, physical, and inquisitive kid who has never traveled on his own or visited a big city is bound to be full of exciting activities in which I wouldn't typically engage -- activities like Hurricane Harbor Water Park and Six Flags Great America, for example.

Unfortunately, physically, I'm not the person Joey knew up until about a year ago. Though you'd never know it just by looking at me, I'm creaky and slow and in constant pain. What's more, I seem to have a physical "max" beyond which I cannot go without risking a severe level of grumpiness. (And let's face it: If Kim ain't happy, ain't nobody gonna be happy.)

So you see the problem, don't you? I so desperately do not want to disappoint Joey (or myself). But I'm afraid I might. Or maybe I should say I'm afraid RA might.

Despite these fears, I have before me an extraordinary opportunity -- because Joey doesn't know that Aunt Kim has RA. Joey doesn't even know what Rheumatoid Arthritis is. When he visits us this summer, I'll have the chance to teach Joey about RA and invisible disabilities.

What would you do here? What would you say? What would you teach an active nine year-old about this disease that has so drastically changed our lives?

ZENbrel

Back BRA (that's "Before RA" -- though, with my recent weight gain, I surely could use a back bra for those annoying new jigglers...), I was something of a prescription and medication whiz kid. Simply because I've always been interested in both medicine and chemistry. (Yes, I am a total goob. A potty-mouthed goob, but a goob nonetheless.) In college, in fact, I did a double-major in chemistry and psychology, and seriously considered medicine as a career.

Anyway, you could say, on a certain level, that I "loved drugs." Really and truly loved drugs. For example, I knew brand names and generic names, effects and side effects, mechanisms of action, and medications in similar classes. I was a walking PDR (Physician's Desk Reference, the "medical bible" on all things prescriptive) whom family and friends would consult for advice on medications. I was so interested in this stuff that I kept the actual PDR (for light reading, not for extra toilet paper) in my bathroom.

But something strange happened to me ARA (that's "After RA").

Sure, initially, I did all of the research on the meds I was trying: As a chemotherapy agent, Methotrexate depresses the immune system... which explains why I got colds and cold sores after every dose. And Leflunomide, well, that causes alopecia (the technical term makes hair loss sound much less threatening, don't you think?), which explains why I developed (and have yet to recover from, dammit) granny hair and had to -- good God! I mean, it's so '80s -- GET A PERM! (So now I'm fat, bald, and slightly fuzzy. Oh, the indignities.)

I actually became obsessed with RA meds. Mostly because they're so scary. Turns out black boxes aren't just found on airplanes, and when you have to consult them, they both contain information you really don't want to have to know.

My obsession had me consulting and re-consulting, poring over information about the bad things that could happen, and becoming hyperaware of my own body: "My throat is hurting a little bit: am I getting a cold?" "OMG -- where did that bruise come from? Do I look pale? Is something happening to my blood?" "I have some specks in my eye. Should I discontinue the Plaquenil?" "I have abdominal cramps: Is that from the Leflunomide or is it from my period? Oh, wait... I don't have a uterus. Nevermind." "Oh God, please, no -- I HAVE A HANGNAIL! What could that mean?"

I was driving my poor husband crazy. Okay, forget about him, I was driving MYSELF crazy.

But one day, something happened. I guess you could call it a cosmic karmic crisis. I just became completely overwhelmed, depressed. I wouldn't get out of bed or eat -- couldn't get out of bed or eat. I actually lost weight. I cried. And cried. And cried. This went on for several weeks. (Again, my poor husband.) As a former therapist, I observed with scientific interest and accuracy my symptoms. As a human being, I absolutely loathed what I was going through. Finally, I realized I was miserable enough both to get myself some help (on a variety of levels) and to seriously change my approach to RA and to living.

So I did.

I can't say it was easy, and I admit to having the occasional relapse into my old behaviors. But I just won't do that any more. I can't afford to do that anymore -- spiritually, emotionally, physically.

So I tossed out my PDR. And when I get a "consultation" these days, I respond peacefully, "I just don't know. I'm afraid you'll have to look that up yourself."

Because what will be, will be. I'll deal with it as it happens, if it happens.

And when people ask me what medications I'm on to treat my RA, I tell them, "I'm on ZENbrel."

"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.