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.

One Step at a Time

One of our cats, Patch, is a tiny thing -- maybe six to seven pounds. Because she's so small, people often mistake her for a kitten.

But the truth is that she's far from kittenish: She's sixteen and a half, and recently, she has been showing her age. She sleeps more, eats and drinks less, and, most noticeably, has been a bit wary of making the graceful leaps onto the high and forbidden places that made her such a cute nuisance in her youth -- places like counter tops, vanities (She has a rather repulsive fascination with the faucet. I call it "repulsive" because we, too, have to drink from said faucet.), bookcases, refrigerator tops, and cabinet tops.

One especially notable place to which Patch now has trouble ascending is our bed. Preferring to spread as much fur as possible on Eric and me, she delights in crashing out on the bed most of the time. The problem is, "crashing" has become the operative word lately.

Sometimes, she just can't quite make the jump from the floor to the bed. And so she crashes back onto the floor. While this might be funny to view while you're sitting against the headboard and can see two little ears repeatedly poking up and down from the end of the bed, it isn't funny when you realize that it's a significant sign of how much she is aging.

In order to help Patch out, we purchased "pet stairs." You know what I'm talking about, right? Those faux-fleece little steps designed to make it easier for your pets to go where they're technically not even supposed to go. Yep, we bought those stairs and placed them at the foot of the bed, where the wee one could use them to ascend to her throne.

Despite training, however, the damned cat refuses to use the stairs. She'd rather do it on her own, thankyouverymuch, crashes be damned.

I can understand now why people often say that their pets are their "familiars." Because it sure seems as if that stubborn, aid-refusing cat is a lot like her owner. Only, her owner has the added benefit of a much larger brain; thus, for the owner, the adjective "stupid" should be added to that list of characteristics. 

In my defense, however, I have to admit that these days, I am much more comfortable accepting help and making concessions to/for my RA. Have to move the couch to put up the Christmas tree? Eric will do it. Can't open some stupid plastic packaging designed to outlast even a nuclear detonation? Eric can do it. Can't lift a ton of groceries? Eric can do that, too.

Of course, there are times when I go all pig-headed, do something I shouldn't, and then am sorry for it later.

But gradually, unlike Patch, I am learning to use the stairs.

I hope you are, too.

Happy Thanksgiving, all!!

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.

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.

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....