RA (Rheumatoid Arthritis) Sucks

So, here I am...

waiting just a few minutes before I inject myself with proteins derived from Chinese hamster ovaries.

I swear, I keep waiting for the desires to run on a metal treadmill, gnaw on small pieces of wood, or devour my own children to sneak up on me at the most inopportune time. Of course, I guess it helps that I don't have any children.

You know, I am mostly a suck-it-up kind of person. It's the way I was raised. And, that sort of attitude represents the stock from which I sprung. I mean, my great grandmother married a very friendly and notoriously unreliable alcoholic and subsequently ran both a gas station and a bar with only the help of a Louisville Slugger -- all while the hubby slept it off in the overturned Model T off to the side of the road. Oh, and she had RA, to boot.

My fondest recollection of her is from when I was five and she was 83. She'd moved down to Louisiana by then for the warmer weather. Anyway, one day while I was visiting, near dusk, she went streaking outside with Louisville Slugger in hand. I heard much clattering and grunting among the trees and bushes near the house, and subsequently witnessed an armadillo emerge to make for the swamp. Nannie chased him to the edge of the property line. When she came into the house, she looked at me, squinted up her eyes, and announced, "Armadillos. Never could stand the looks of them, Kim."

I can only hope that I am fortunate enough to approach life with RA in the way that Nannie did, with Louisville Slugger in hand.

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.

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."

On Zombies...

(This is entirely non-RA related. Just so you know.)

I am a VORACIOUS reader. My mother once said that the rate at which I read makes it seem as if someone is following me with a knife.

I'm afraid my reading "non-addiction" (heh) has become even worse since we moved to Chicago. Whyzzat?

Because of that evil device known as Kindle.

My Kindle allows me to buy books from the comfort of my own home (which is clearly a win right now, given that I'm crutch-bound for three more weeks). It also allows me to store said books electronically, without having to worry about finding room for them in our cramped urban quarters.

So what do I read? Anything and everything. Except romance. I read history, fiction, historical fiction, biographies, horror, humor, science, spirituality, mysteries, economics, and Jane Austen. (Okay, I know that Jane Austen *is* romance, but it's also biting social commentary. I also watch "Pride and Prejudice" at least once a year. I mean, Colin Firth in tights... oh my!)

Anyway, lately, I've been on a horror jag -- more specifically, a zombie jag. A post-apocalyptic zombie jag. (Yes, I've read "Pride and Prejudice and Zombies." I thought it was okay, but I got bored with it about half way through.) Who knows why? Sometimes I just go through phases.

I finished one such piece of pulp the night before last and promptly started a new mystery. But last night, I dreamt about zombies attacking Eric and me. Having read so many zombie novels, of course, I was prepared and knew exactly what to do: shoot the suckers in the head. But eric was wary of shooting the things. (Don't ask me why. Ask him.) One of the reanimated dead was close at hand and I was out of ammunition, so I picked up a stick of furniture with my left hand and brained the damned thing.

At that point, Eric woke me up. Apparently, I'd been thrashing about and kicking in my sleep, and had just succeeded in whacking the crap out of my bedside table, thereby scattering my glass of water and the various and sundry books and medications I keep there. It was a mess. And I had to clean it all up then, at 3 AM. As I cleaned up, I told Eric about the dream.

When Eric and I finally settled down in the dark to reachieve sleep status, I turned over and punched him in the arm. "Ouch. What was that for?"

"For not listening to me: Shoot first; ask questions later."

Jeez.

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.

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.

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.

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.

RA and New Friendships

So, at 43, I am middle-aged.

Middle-aged and new to Chicago... and thus, looking for new friends. The question is, how do I go about finding what I'm seeking?

If Eric and I had kids, it would be easy to meet people: kids are a great ice-breaker and friendship-builder. If I were single, it would also be fairly easy to meet people through social events designed specifically for the unpartnered. If Eric and I were employed outside the home, we might also have an easier time of it, since we might find some people from the office to hang out with. And so on. 

But the thing that makes it most difficult for me to meet people and develop friendships right now is my RA. Why is that?

Well, if I were relatively healthy, Eric and I would join some sort of sports league in the city; tons of them are available. Softball, volleyball, kickball, dodgeball. These are just a few of the fun things I've done in the past (I used to be really athletic) and would love to do now... but can't. Because of my RA.

In addition, there are some other non-sports things in which I'm interested. Like making stained glass windows or doing ceramics and pottery or learning woodwork. But again, I'm limited by my RA.

So, I'm now connecting with some people online (it's an awful lot like using Match.com to try to find friends) and I'll be meeting a few of them in person shortly. But so far, I have to admit that haven't told any of them that I have RA.

I know why I haven't told them. Do you?