RA (Rheumatoid Arthritis) Sucks

Pushing the Limits

Last Thursday, I played nine holes of golf. The next day, I played 15 holes of golf. And then the day after that, I slept for almost 16 hours.

Now, I realize that creating a situation in which you lose pretty much an entire day due to pain and fatigue may not be ideal for everyone, especially for those people who are employed or who have children. But I have to say, it works for me.

I realize that I may sound like a mad woman, seemingly hellbent on destroying myself. But that's not the case at all.

I mentioned last time that I had become more intentional in my way of living and being while simultaneously being less intentional about my RA. Part of my new way of being involves doing as Thoreau suggested: To "live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life...."

Granted, in order to do this, Thoreau more-or-less escaped from civilization and into nature.

However, I think that in order truly to follow Thoreau's example, most people with chronic pain and illness have to escape into the very messiness of life. To dare, to dream, to breathe deeply, to be bold, to push limits. To rest and refresh. And sometimes to go splat. And then to do it all over again.

I'm aiming for at least one day each week to be splatterday!

False Start

Yes, it has been a while. And you've missed me, I know. Bwahaha....

I guess I just had a weird thing happen oh-so-long-ago: I made an unconscious decision to try to live a life outside of my identity as an RA patient. I decided to go out more; to play golf more; to travel more; to eat and drink more; and, most importantly, to concentrate on my RA less.

Now, I know that there are tons of people who say, "I am not defined by XYZ." But the truth is that they are. And I was one of them. No matter how much I snarkily proclaimed otherwise, in some ways, I let my disease be my dictionary: "Let's look up the definition of achy. Hmm: it says Kim." "Well, then let's look up the definition of tired. Whaddaya know, that says Kim, too." "And douchey? Yep, you've got it: Kim."

I just got really tired of all of that crap. Of visiting forums and reading blogs, nearly all of them RA-related. Of looking for the latest RA-related medical news. I mean, I was spending so much time looking at RA that I wasn't actually living with RA. If that makes sense.

Anyway, one day, I just stopped. I don't know how. I don't know if there was a particular bit of information that might have made me throw up in my mouth a little bit. Who knows.

All I do know is that I started going out and living. And to my utter non-surprise (remember, I am a trained therapist), I stopped thinking about RA so much. Gradually, its effects didn't bother me nearly as much as they once did. Sure, every once in a while, I'd find myself thinking, "Shit, my hands hurt!" But then that thought would vanish from my mind as I looked at that little pink golf ball and tried to figure out which iron to hit it with. (It turns out that it didn't matter: all of my irons go the same distance anyway. Because I suck.)

Of course, as a therapist trained in the cognitive and behavioral traditions of therapy, I would expect that changing my cognitions and/or behaviors would change my feelings. But I guess I'd never really put it all into practice. Ha!

RAer, heal thyself.

Pax.

Maui - 5 - 0

Well, we arrived with little fanfare on Saturday afternoon. My only complaint was that my butt really hurt after the 8-hour flight. The Enbrel stayed cold (hell, the gel packs stayed almost completely frozen) during the length of the trip (about 12 hours), so I was impressed and relieved.

Otherwise, our stay has been unremarkable. I mean, yes, it's better than Chicago at this time of year. But right now, it's unseasonably windy and rainy here. Hah -- just listen to me complain about being in Maui: I'm such an asshole.

The RA has been so-so. I seem to have more swelling than usual, but the pain level seems to be about the same.

We've seen a couple of whales breaching in the ocean (as opposed to those of us who remain clothed and land-bound).

I know: this is such an exciting post, right?

Anyway, here's a pic from our balcony:

 

Aloha for now!

Aiyah!

Well, I've had quite a month. And despite my best efforts, it seems as if I can never get this blog on track or even follow other blogs with any kind of consistency. I'm kinda hoping that will change over the next month or so, however.

Anyway, over the past month, I've been doing the following:

1. Changing meds. Hint: never try to change two meds at once, and listen to your body when it says to you, "Stop taking that shit; it's seriously fucking you up."
2. Changing RDs, since my old one is moving to -- gack -- Indianapolis.
3. Fighting with the insurance company about a $3K test that they don't want to pay for.
4. Starting to work with a new physical therapist.
5. Trying a new mode of treatment (epidurals) to deal with lower body pain issues.
6. Unexpectedly attending my brother-in-law's unexpected wedding (no, pregnancy was *not* involved).
7. Dealing with insomnia, fatigue, dry and itchy skin, and the hot flashes associated with menopause, which makes me very grumpy. (It seems grossly unfair that women have to go through significant hormonal issues twice: once during puberty and again during menopause. I consider this issue -- like farting -- to be a design flaw, and I intend to take it up with the management eventually.[And the reason I consider farting to be a design flaw is because of the odor. Couldn't God have made it so that we expelled unnecessary gas without the accompanying foul odor???])

I guess two positive things have happened recently: my 17 year-old kitty no longer seems to be quite at death's door; and we are leaving for a two-week vacation to MAUI tomorrow! Yay: sun, warmth, snorkeling, and hot pool boys to bring me cold tropical drinks! It's definitely worth the ass-numbing nine-hour flight to get there, although I intend to buy a helpful donut cushion once we're at the airport. Here's hoping the Enbrel stays cold on the trip over....

I'll try to make a couple of posts (with pics) from Maui. I know that last year, the climate over in HI didn't seem to affect my RA. But back then, I drank a lot and my RA wasn't as "wonky" as it is now. Since my age is catching up with me and I can no longer drink like a wahoo (a fish that can drink more than twice its weight), it will be an interesting experiment.

C U L8R!

Things I Do Not Like

I am going to list these things in no particular order. Yes, some aggravate me more than others, but my level of pissy-ness is subject to change depending upon the weather, the smell coming from the litterboxes, the number of hairballs to be cleaned up, any changes in my medications, the onslaught of a migraine, my husband being a douche, the clicking of my neighbor's heels against the ceiling, which contestants get tossed off American Idol, or the number of Gin and Tonics I've consumed. And that's just a partial list. Have I mentioned hormones?

1. People (like my father's third wife and actually, even a few RAers) who have the attitude "If God puts you to it, God will pull you through it." I call bull. In the first place, I'm not Job. I no more believe that God has afflicted me with RA than I believe God gives a damn about who wins American Idol or who makes a touchdown in the Superbowl. I think God has more important things to worry about, like world hunger and clean drinking water and global warming. So, God didn't bring this crap upon me. Of course, neither did I bring this crap upon myself. Simply put, in this world, crap just happens. And when really bad crap happens, I believe that God's heart breaks. The best thing that I can do when crap happens to me is to try to bear it. With laughter and anger and tears. And with some faith. By faith, I mean raw, honest faith -- not the kind that results in the uttering of saccharine and unrealistic platitudes.

2. People who say that they are thankful that they have gotten RA. Again, I call bull. Sure, RA might have helped to make me a more patient and empathetic person. But did I really have a choice about that? I'd like to think that I could have improved without the "benefit" of RA. In fact, I think age pretty much brings with it that kind of warmth and wisdom. It's not like I would have been smacking my head with my hand and saying, "Gee, I wish I could have had RA so that I could be a nicer person!" And honestly, even if age didn't bring with it a certain kind of amount softening, would it have been so very terrible to have one more healthy jerk in the world?

3. Avocados. No guac for me!

4. SmartCar owners who somehow manage to take up two parking spaces. Douchenozzles.

5. People who are consistently and unrealistically upbeat and smarmy about RA. These kinds of attitudes actually can be witnessed in a few online RA communities. Look, I "get" wanting to be hopeful about the disease and the course it may take in your life. In fact, I'm all for hope -- but the realistic kind of hope that attempts to encourage you to act, to gain knowledge, to be more responsive to what is happening with your RA. While a few of us may be fortunate enough to experience a miraculous cure of our disease, most of us one million plus poor schlubs will deal with it every day of the rest of our lives. We need education and knowledge -- things that give us the opportunity to take at least some control of our disease. We don't need smarmy and unrealistic expectations.

6. RAers who cannot disagree with one another in an adult fashion. Look -- there are tons of different RA medical approaches, homeopathic approaches, physical regimens, and psychological therapies out there -- as well as a host of interpretations regarding them. And we are all individuals. What works for me may not work for you and vice versa. Isn't it reasonable that we will disagree with each other occasionally about all kinds of things -- even RA? For example, you may happen to love Rituxan and guacamole, even though they make me shudder. So what? And isn't conversation how we learn new things? I can say that I have never refused to post any comment to my blog, regardless of my agreement or disagreement with the author of a comment. (Of course, spam and sales pitches are exceptions.) I think the RA community would be much better off if we were able to dialogue and disagree with each other honestly, without the pretense of sham or faux homogeneity.

7. White chocolate. It is an oxymoron. There is NO COCOA in white chocolate. It is merely white wax. Ugh.

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.

Helpful Hint for Carpal Tunnel Syndrome Sufferers

Yes, my web-browsing habits are a bit unusual. But you never know what you might out there. So here, I offer an intriguing scientific study regarding Carpal Tunnel Syndrome (which affects a significant number of people with RA).

Link.

Warning: It is highly recommended that you have a very robust sense of humor if you intend to click on the link!

Well, crap....

Yes, it has been a while. A very looong while. What can I say? I've been fatigued -- both physically and emotionally, have been in the grip of a significant flare, and have been trying to change medications. In short, lately, I've been a crazy woman.

Plus, my oldest cat, Patch, who has been with me for 17 years, is dying. So I've been depressed, too.

I'm also really tired of winter. Perhaps I have a touch of SADs?

In the face of these happenings, I've been loath to do much more than I need to. We're talking bare minimum here (and I do mean "bare," since the garb I wear these days tends to be little more than t-shirts and granny panties. I know: You could do without the visual, right?).

And I haven't had much to say, because I've been thinking too much. I tire myself out with my cognitive tendencies. You know how, sometimes, you think that if you hear or see one more word about RA or its effects, you're going to scream? Yeah. So that's been me lately.

I guess you could say I've been practicing avoidance. Not denial, but avoidance. And it's a very specific avoidance: the avoidance of RA-related stuff beyond my immediate experience. Sometimes, I just can't hack that stuff. And this makes me feel a little bad. Because I know that those of us in the blogosphere have been able to form a community of sorts, and that this community gives us support in ways that other people and venues can't.

But sometimes, I just want to hibernate. Because I've eaten all the salmon and berries that I could find (or, in my case, Reese's Peanut Butter Cups), and if I try to eat one more tiny berry, I'm going to throw everything all up over everybody's shoes. And we all know how much fun that is to clean up.

Not.

Anyway, I'm still here. I'm just waiting for some crocuses to pop up through the snow. Is that too much to ask? (Hmmm. This feels like an "Are you there, God? It's me, Margaret" moment. Sigh.)

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?