Again? Really?

February 21, 2012 at 3:30 pm (Uncategorized)

Not this again. Not another neurosarcoidosis flare-up.

I would do just about anything to stop the vertigo, blind spells, and crushing head pain that have been laying me low for the past few days. Unfortunately, you can’t bargain away a disease.

Here’s what’s happening – injuring my ankle seems to have let the sarcoidosis out of its cage. My doctors have assured me this is “normal.” A traumatic injury can upset the delicate balance we’d achieved to control the disease. I wasn’t well before I slipped on the ice and ruptured my ankle ligaments a few weeks ago, but I’d been managing the disease with high doses of prednisone and monthly infusions of chemotherapy and other immunosuppressants. Not any more.

I guess it makes some sense. Sarcoidosis is an inflammatory auto-immune disease. My body’s own inflammatory immune responses have gone terribly awry. I picture my beleaguered immune system like a car without brakes, careering down a steep mountain slope. Once something like a busted ankle kicks starts that inflammatory process, it can’t stop. What started with a badly swollen ankle now involves my brain. Good old cranial nerve #8—the vestibulocochlear nerve—has joined the inflammation party. When it’s out of whack, so is my balance. The blind spells are caused by inflammation on my optic nerve.

I spent the past long weekend in bed with terrible vertigo and flickering vision. Even when I closed my eyes, I could feel the world spinning and whirling around me. It’s a little better today, but it still looks like these words are dancing as I type them. The vertigo makes me nauseous and gives me a raging headache.

There is nothing to do but wait it out. I’m already on the only treatments for this disease that they have. I might not be posting here as often as I’d like—or getting back to your comments as quickly as I want. My hope is that a lot of rest will help things calm down. So that’s what I’ve got to get back to now.

Permalink 8 Comments

Dry Bones

February 14, 2012 at 5:39 pm (Uncategorized)

My ankle is a disaster. I learned from my orthopedist last week that I ruptured at least two of the four primary ankle ligaments when I slipped on ice three weeks ago. I can’t drive. I’m still stuck in a giant boot, reliant on crutches and generally barely functional.

It’s all too easy for me to focus on my latest injury. It hurts like hell, and it’s making it even harder to me to scratch out the semblance of a normal life. It was challenging enough to strike a balance with sarcoidosis every day. Throw in a painful and debilitating orthopedic injury and my house of cards is in danger of collapsing.

“Poor me to have yet another setback,” I think. “If I had been wearing better shoes (or had charted a different course through the ice, had better luck, chosen not to walk onto the ice at all, not gotten out of bed that day, etc., etc, etc., ad infinitum) this wouldn’t have happened.”

But my ankle injury isn’t really about the vagaries of fate. It’s not really about my ankle either, as odd as that sounds. The dissolution of my ankle is yet another piece in the complex puzzle of sarcoidosis eroding my body. In other words, my ankle blew up that day not because I took a hinky step on the ice but because of a chain of consequences caused by sarcoidosis—the chronic auto-immune disease I’ve been battling since 2004.

Remember “Dry Bones”—that kids’ song about skeleton bones? “With the toe bone connected to the foot bone, and the foot bone connected to the ankle bone, and the ankle bone connected to the leg bone.” And so on, ending in the refrain, “Oh those bones, those skeleton bones, oh those skeleton bones, how they scare me!”

My ankle injury is connected to its own long list of problems, its own song of dry bones

With the ligaments thinned by the prednisone,
And the prednisone caused a huge weight gain,
And the prednisone emptied the foot bones,
And the foot bones were eaten by the sarcoid.
Oh that sarcoid, that sarcoid,
How it scares me!

Clearly, I don’t have a hidden calling as a lyricist. So, let me make some sense. Since 2004, I’ve been taking prednisone—a corticosteroid with some nasty side effects—to help control sarcoidosis. Because of a recent disease flare-up, I had to go way up on my daily dose of prednisone, as well as get huge IV infusions of the stuff. Although prednisone has seemed to check the sarcoidosis from devouring my heart tissue, it has caused serious problems of its own. It stretches and thins ligaments and other connective tissues, making them less stable. It decreases bone density, and weakens the points where ligaments and bone connect. Prednisone also causes weight gain. I’ve put on nearly 100 pounds since I started taking the drug. The result of all this is that my weakened ligaments are carrying extra weight. Sometimes they snap. To add insult to injury (or maybe just injury to injury), I’ve got sarcoidosis in my bones. Together with the prednisone, the disease is hollowing out my bones, fraying the skeleton which is supposed to support me. Dry bones, indeed.

In the end, dwelling on what feels like the inevitability of injury is just as depressing as feeling wronged for having an isolated injury heaped onto an already sick person. But sometimes it’s important for me to understand the whys of things, to be able to grasp the internal processes that bring me to where I am now. It’s sobering, though, to contemplate the extent of damage this disease has wrought on my body.

With understanding of the underlying causes of the injury, I can make some practical changes. Given that this is the third time I’ve ruptured ankle ligaments while doing nothing more dangerous than walking, I think it’s time to impose a new rule on myself. I will not leave the house without ankle braces tightly laced on both feet. I’ll also stick with the bone-density treatments I take to shore up my bones from the effects of disease and prednisone. I’m going to try and chip away at my excess weight. This is pretty much all I can do.

Have you ever understood that there’s a complicated (and not always pleasant) cause to something in your life? How do you manage this?

Permalink 7 Comments

The Boot Gets Magic

February 3, 2012 at 11:10 pm (Uncategorized)

Me and my busted ankle send greetings from Orlando, Florida.

My apologies for not updating you on my whereabouts sooner. But after another ligament spontaneously combusted, I was too overwhelmed to write and try to travel. So I just tried to travel.

Jay’s father and his partner, Don, surprised us a few months ago with a trip to the Wizarding World of Harry Potter. Just the idea of this totally blew Andrew’s mind. He counted down—first the months, then the weeks, then the days, and then the hours—to go. Imagine my horror, when Andrew announced that we had a scant four days to departure, and I promptly destroyed my ankle.

I spent the first days after rupturing my ligament in a stew of pain, anxiety, guilt, disappointment, rage, and, yes, horror. I have had to miss more family trips than I’d like to remember during the past eight years in Chronic Town. I’ve missed weddings, funerals, vacations, and romantic get-aways because I’ve been hospitalized, or recovering from surgery, or too frail from chemotherapy. I have resented bitterly and deeply the lost opportunities of every missed trip.

“Do you want me to pull the plug?” Jay asked several times every day between Thursday–when I hurt my ankle– and Tuesday–when we were slated to leave.

No, no, no, and NO.

I couldn’t quite imagine how I was going to make the trip, but I knew I should try and that I should trust that I could. Somehow—with the aid of wheelchairs, crutches, pain medicine, determination, constant attention and planning on Jay’s (and then on his Dad and Don’s) part, the kindness of strangers , helpful flight attendants, and good luck—we made it from Montana to Florida.

I haven’t been exactly trotting around the giant Universal Studios complex that houses Harry Potter World. Just lowering my leg still hurts, so I’ve been spending a lot of time horizontally. Which is just fine. I have a view of a lagoon from my hotel bed, and there are plenty of deck chairs by the pool. Everyone takes turns wheeling me around in the wheelchair Don arranged for me. Andrew likes to recapitulate some of the amusement park rides for me whenever he gets to ferry me down the long hotel hallways. “It’s time for speed wheeling,” he announces, as he accelerates. I love it.

Today, I was even able to spend a few hours getting wheeled around Harry Potter World. I have never envisioned myself as a theme park kind of gal. Nevertheless, it was pretty cool. But all the details of Universal Studio’s rendering of Hogwarts couldn’t come close to witnessing how Andrew got excited to show me the amazing world he’d discovered with his grandfathers and his Dad. I loved being able to see it—firsthand, with him, instead of having to wait at home, alone, to hear about it after the fact.

I’m not thinking about the trip home yet. I still can’t quite imagine how I’m going to survive the multiple, cramped plane rides home. But I am going to trust once again in the magic that weaves through and sustains us in this life. In any event, it’s not for a few more days.

I have so much to write about when I get back. I’ll most likely be off-line until I’m home. I’ve been trying to blog more regularly, but I know you’ll understand why I need to keep my computer off and my mind in the present. There’s a lot for me to see.

Permalink 6 Comments