RA (Rheumatoid Arthritis) Sucks

Competitiveness

At two weeks post-op, I still find myself sitting on my fat ass most of the time. (Okay, the past couple of days -- in which I've had some MD and PT appointments, and in which I discovered that two blocks is a looong distance on crutches, even when inebriated -- have been exceptions.)

Anyway, between my wallowing, I occasionally have been watching the Little League World Series. While I enjoy taking in a Cubs game at Wrigley, I find there's something really engaging about watching children play sports. They are so focused and so earnest. And so obvious in their emotions and reactions to games. Those wins and losses are etched so clearly on their faces. Joy is revealed in disbelieving laughter; sorrow is made visible in tears and quivering lips. Losing is a struggle, even at such a young age.

I freely admit that I am not a good loser. Never have been, never will be. Screw being gracious in defeat. I want a re-match, and I'm going to win!

There's a resoluteness (some might call it pure foolishness) in my refusal to give in.

WRT to RA, I think this resoluteness initially was not serving me well. I found myself angry quite a bit of the time, and sad or disillusioned at other times. It was a hell of a place to live (or should I say, "to get stuck.") It's not easy to transform from a driven, competitive, hardnosed player to an accepting, soft-spoken bystander. But the truth is that I haven't done that at all.

Instead, I've simply changed the rules.

For example, I used to be a golfer who could easily shoot in the low to mid 80s, within the USGA rules. Now, within those same rules, I'm lucky if I can shoot that score in 9 holes. (Hell, I'm lucky if I can play 9 holes.) You see, those rules don't work for me anymore. So I've adopted new ones: Have fun; try to do as well as you can; cheer everyone else on; don't hold things up; and above all, have fun. I can live with -- in fact, I can flourish within -- my new rules.

There are plenty of other areas in which I've changed the rules: the cleanliness of the house; household tasks; reading; laundry; pool; video games; exercising; and so forth.

Oh, I'm still competitive. But I'm competitive within my new sets of rules -- rules that actually pretty much allow anyone to come out a winner. I know I can.

I'll bet you can, too.

Dependency

Day 11 of my captivity....

Well, here I am at 1.5 weeks post-surgery. (For those of you unfamiliar with my hip surgery, I had a labral tear and femoroacetabular impingement -- which basically meant a cartilage tear and a deformed thigh bone head. During my surgery, the tear was removed and the deformity was "Dremeled" down. Consequently, I am on "non-weight-bearing" status for six weeks.))

Unsurprisingly, over the past week or two, I've experienced a few untoward incidents, most notably falling down a flight of stairs when my bullheadedness (I am "option recognition deficient") led me to try to crutch my way downstairs alone after my husband had left the apartment to run an errand.

Apparently, I need a "spotter." Or a sitter. Or something like that. I just know that life in the past two weeks has left me feeling woefully dependent on Eric -- and that I hate this feeling.

I'd already become somewhat acquainted with dependency through my RA: after all, I no longer open cans and jars; I can't lift as much as I used to (e.g., Amos, my 20-lb cat); I need help when trying to stand from a kneeling position; I can't always do the dishes; etc.

And because I've been off Enbrel now for 5 or so weeks ("No immunosuppressants for you during surgery and recovery!"), I've noticed a vicious strengthening of some of my worst RA symptoms: the pain, the fucking neuropathy, the fatigue (especially since I'm trying to haul my fat ass around using only my arms / upper body. It's like watching a Hershey's Kiss try to navigate on crutches. But mmmm: chocolate.), the trembling with overuse of my hands, etc.

But there is something particularly galling about having to be helped up from the toilet. And especially not being able even to carry a book from the bedroom to said toilet (need the hands to guide the crutches, after all. And I hate being bored in the bathroom.).

It all makes me feel vulnerable. And that, in turn, makes me feel angry. Of course, there is nothing on which I can focus this anger. Worse yet, there's nothing I can do to change the situation. I simply must make my way -- however angrily or however slowly -- through it. I need to endure.

In my quieter moments, I find myself hoping fervently that my current situation is not a harbinger of things to come.

But the truth is that RA confers upon the body a tremendous beating. Certainly, it has given me an advance look into that stage of life that my parents are entering now and my grandparents already passed through.

And it's a bit daunting and frightening. For me, anyway.

---

Helpful tip of the week: Alcohol and crutches DO NOT mix.

That is all.

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

On Dual Citizenship

"Words, words, words: I'm so sick of words...."
- Eliza Doolittle (My Fair Lady)

When we're in a foreign country, we become acutely aware of the importance of language. Unless we understand the language, words become a blur, sentences a smear. Essential communication is reduced to simple gestures and potentially universal words like "yes" and "no" (spoken loudly, of course, to increase their effectiveness). What's more, we're unaware of any customs, norms, and mores that could help us get along in society. In other words, in a foreign country, we can find ourselves up the proverbial creek without a paddle.

Being diagnosed with RA basically is the equivalent of suddenly being dropped off in a foreign country.

We don't know the language, the norms, the customs. We don't know our way around. We stand there with a crumpled map in our hands and don't know where in hell to go or what to do -- or even whom to talk to.

"Okay, you meet five of the seven diagnostic criteria for RA as designated by the ACR." RA? ACR?

"Your ESR and CRPs are elevated, but your RF is negative." ESR? CRPs? RF?

"We'll need to start you on MTX, which is a DMARD." MTX? DMARD?

"And you'll have to have blood tests every four weeks so that we can at least check your ALT." ALT?

HOLD IT -- WTF???????? Have I at least made myself clear: What the fuck?

After receiving my diagnosis, I felt as if (in the words of the great Lily Tomlin) I'd been dropped off on the proverbial corner of Walk and Don't Walk with a map in one hand and a translation copy of "The Rheumatoid Arthritis Patient's Guide to Medical Terminology and Life with RA" in the other.

It seemingly took forever to get my bearings and to make my simplest questions understood. Where am I, really? Why do I have to play pincushion once a month? What are the side effects of these medications? What can and can't I do? Why is this happening to me?

Gradually, I learned my way around. I purchased the equivalent of the RA Rosetta Stone and studied day after day. I consulted my map and committed several important routes to memory. I learned where gas stations and community centers were, so that I could fill up both on knowledge (thus power) and on friendship. Eventually, I found that I couldn't remember a time when I didn't know the new language, culture, and customs.

And it all was okay.

Until I returned to my country of origin.

Once I was back home, I would speak my new language to other people, expecting them to immediately understand what I was saying. Misunderstood, I would gesticulate wildly and speak loudly, attempting to communicate with friends, family, and sometimes, even strangers.

It was an odd and unsettling experience to find myself a stranger at home.

But gradually, some people took the time out to try to learn at least the rudiments of my new language. We were able to communicate with each other on new and different levels, and this helped to enrich our relationships. There's still the occasional hiccup or misplaced accent, but that's okay. We work past it.

Of course, not every one has wanted to learn the new language. And that's okay, too.

As time has passed, I've simply grown accustomed to doing what I do these days: straddle two different countries. But since I've gotten to know some great people in both countries, I've found that dual citizenship does indeed have its privileges.

"Accept that you have RA," redux

I've been thinking a great deal lately about accepting the idea that I have RA -- ever since I posted my screed about what I believed to be the cavalier attitude toward acceptance that seemingly was suggested by one website (which subsequently is undergoing editing).

Acceptance is not an easy thing.

The other night, I watched a movie called "Boy Interrupted." It was a documentary that detailed filmmakers Dana and Hart Perry's  heartwrenching experience of the suicide of their 15 year-old son, Evan, back in 2005. The film was fascinating in the way that it opened up so vividly the worlds of mental illness and suicide with nary a backward glance. Nothing was concealed; the entire project was conceived with an eyes-wide-open approach.

What stands out to me most about the film is its final scene, in which Dana, some year and a half following Evan's suicide, notes that she still can't believe it happened; she can't accept it. In some way, for her, Evan's suicide remains beyond the boundaries of reality. And yet, life goes on.

I remember hearing a similar thought from my mother in the aftermath of the unexpected and tragic deaths of her mother and her only sibling, just a few months apart. She said, "You never really accept it. You just learn to live with it."

You never really accept it. You just learn to live with it.

I don't know whether it's for good or for ill, but if I think very long and very hard about it, it seems to me that this is the way I have approached RA. Sometimes, I just don't believe that it has happened to me. Things like this shouldn't happen to me; things like this happen to people I read about in magazines or see on the news or in films or hear about by word of (whispered) mouth.

You see, I guess I haven't really accepted that I have RA. I'm just trying to learn to live with it.

On Beds and Bugs....

No, this is neither a post nor a commentary on bedbugs (shudder). Instead, it is a post on beds and something that bugs me.

In our five years of marriage, Eric and I have gone through three beds. I wish I could claim that such rapid bed use and/or destruction was due to something other than somnolence on our parts, but, well, never mind: I can lie. We definitely are hot and heavy a lot of the time. Actually, that's only a partial fib. We're just plain heavy -- lard-butts, if you will.

Consequently, our beds develop ass divots rather quickly. These ass grooves, which tend to be deep enough that our beds eventually acquire the topography of rounded versions of the Swiss Alps, create stresses and strains on my back... which, in turn, cause much sleeplessness and grumpitude on my part.

And grumpitude is something I try really hard to avoid.

Anyway, yesterday, we took delivery of our fourth bed in five years. It's a firm Stearns and Foster. Because that's what I thought I wanted. My reasoning was as follows: a firmer mattress would offer more "springability," thus decreasing the butt holes.

Er, that didn't come out quite right.

Anyway, my husband, who is capable of sleeping on a bed of nails (or, alternatively, in a skeevy and bug-ridden Super 8 Motel room that not only caused me insomnia, but also made me don sneakers IMMEDIATELY after emerging from the shower [i.e., there was no way in hell that even my socks were going to touch that fugly, infested carpet]), had no input into the mattress decision.

So it's all my fault: The damned mattress is too hard.

Now, I know I may be more achy than usual since I have discontinued Enbrel prior to my hip surgery next week, but.... Holy crap, Cartman! That mattress killed Kenny! Seriously, after just five hours of sleep, it was all I could do to get out of bed: everything hurt in an OMG kind of way.

As soon as he awoke, I said to Eric, "I couldn't sleep. The bed's too hard. We have to buy a mattress topper." And boy, you should have seen the puss on his face.

And I thought, "Good sir, by my troth, thou hast lived with me for nigh on half a decade in glorious wedded bliss. Such an event as this one shouldst provide nary the scent of a surprise to thee. Verily, it is in mine nature to changeth mine mind. Hast thou not been weaned from thinking otherwise?" 

Yeah, right.

What I really thought was, "Get over it, Dude."

Anyway, we'll be going to Bed, Bath, and Bankruptcy later to buy a mattress topper.  I really don't like pure Tempurpedic ones because I feel like I'm drowning in them. But I have a particular topper in (my changeable)  mind. We'll see how it goes.

So, the other topic I wanted to discuss was a particular thing that bugs me: specifically, the loss of fine motor control that RAers frequently develop, either as a result of stiffness, muscle tension, deformity, or some other event.

You know what I'm talking about, right? It's hard to thread a needle, utilize a Blackberry, paint your nails, or perform hideous medical experiments on friends and relatives.

Well, I have been dealing with a problem that I find to be especially vexing of late. As a perimenopausal female living with RA, it has been my experience that due to both aging and RA treatment, the following occurs: My skin is no longer as elastic as it once was. I get fatigued more easily these days. It takes longer for me to heal. And I am losing hair in places that I shouldn't be and gaining hair in places that I definitely don't want.

Can we say "beard?"

Okay, maybe it's not that bad... yet. But damn. As if unexpected chin hair growth isn't bad enough, add to it the fact that because my fine motor control isn't what it used to be, I can't tweeze the little suckers away -- and you have a whole lot of ugly. If I attempt "tweezure,"I wind up looking like someone who belongs in a scene from "Twilight" or "True Blood." Ugh.

What does that nursery rhyme say? Oh, yes, I remember....

"Little pig, little pig, let me in!"

Only if you pluck the hair from my chinny chin chin. And don't sleep on the fucking bed.

Update: "Advice...."

I received a very thoughtful email response to a criticism I mentioned in my last post (regarding the suggestion that RAers "accept that you have RA.").

In the response, I was informed that the site was working to update their content, and that they had no intention of offending anyone living with RA.

I believe this. What's more, I think it's pretty amazing that a site and its creators can be so responsive to concerns that have been raised by people for whom the site has been designed.

As an RAer, I can only wish that others (family, friends, healthcare professionals) would be as responsive.

Advice: "Accept that you have RA...."

Okay, so we're back from Vegas, only slightly poorer. I love Vegas; I just wish it weren't so smoky.... Blech!

Anyway, I recently came across a website for RAers that offers tips, articles, etc. Though I found it to be an intriguing site, I came across one "tip" that simply raised my ire. The tip says, in part, "Take more time blah blah blah blah. Accept that you have RA and that you will have to make adjustments in your life."

Now, I am completely aware that in general, I am not someone who likes being told what to do. I suspect this has something to do with my birth order: I'm the oldest, I'm bossy, and I like making up my own mind. Thus, I already have this unfortunate personality trait with which to contend.

But... Someone telling me to simply "accept that I have RA"??? What kind of bullshit is that?

Being told to accept RA as if acceptance of a life-changing event is something that can be accomplished in the space of a second? Being told to accept RA as if acceptance isn't a grieving process, fraught with difficulty, despair, and backward and forward movement? Being told to accept RA as if acceptance isn't rendered even more painful by the difficulty of obtaining a diagnosis as well as the difficulty of determining a successful course of treatment? Being told to accept RA in a manner that's basically akin to receiving a patronizing pat on the head and a tut-tutted "there, there"?

It's just not realistic. It trivializes everything about RA: from the disease itself to its effects on our lives. And so I call "Foul!"

If you'd simply said "Try to accept that you have RA...." then it would have been better. If you'd said something that acknowledged that acceptance is a process, then it would have been better. If you'd tried -- really tried -- to put yourselves in our shoes, then it would have been better.

As it stands, though, please try to accept that my middle finger is being waved in your general direction.