I am on vacation.
For an entire week, my husband and I are away from home, away from work (well, mostly—if there’s Wi-fi available, we work a little bit), touring the beautiful Olympic Peninsula. As Seattleites, the Olympics are pretty much in our backyard; touring the Peninsula is at once exotic and homey. Quite a way to spend a week.
We did this trip two years ago—during my first year of TPN, before we’d figured out that Phenergan causes me to experience severe amnesia as well as rebound anxiety/panic attacks, and before we knew—for sure—that TPN was not at all temporary. During that time, we were still waiting for the gastric stimulator to start helping, still waiting for that momentous day when I would celebrate a functional GI system by sharing an expensive dinner with as many friends and family as we could possibly gather together. The problem is that when you’re constantly in waiting mode—constantly hoping to magically turn the corner into normalcy—your attitude is bound to suffer. Or at least mine is. Every day of hope turned into one more day of disappointment when I still vomited, still couldn’t tolerate any solid food. Every morning when I hooked up to my TPN (I ran it during the day then, and carried it around in a backpack at work), it was an admission of failure, and every visit with the doctors reinforced that disappointment and letdown. It was not a positive place to be—always hoping against hope, always having to tell the myriad well-wishers that nothing had improved. I got so tired of hearing the rather meaningless and vague remark that my “color is good” that it became a joke between Greg and me. Fever of 104.7°? At least my color is good! Too tired to take a shower? At least my color is good! I know that the people saying it mean well, but it’s become nothing more meaningful than a platitude offered to someone who often feels like she could vomit up her entire gastrointestinal system—and be better off for it.
Anyway, back to the 2005 trip… To say the least, we weren’t in the greatest physical or emotional states. We were both exhausted, tired of putting up a good front so that we could cower in our apartment and cry ourselves to sleep as needed. I was gorked out on IV Phenergan, wiped out by my own far-less-than-compliant TPN schedule, emotionally drained from nine months of unfulfilled hopes, and coming up on a whopper of a bout with line sepsis. So in general, I didn’t have much energy to get out and enjoy the beaches or hike up the short trails to scenic vistas. And, to be honest, I remember so little of it that Greg has to remind me that we’ve been here and seen this before.
So here we are, not quite two years later, and our lives are abundantly different, though from the outside, the circumstances probably look much the same. I’m on TPN, I’ve got even more tubes and ports and implants, and I still spend a lot of time sleeping. But today I had the energy to go walk the beach for awhile (even with a brisk ocean wind), climbing on driftwood, taking pictures of the lodge where we’re staying, generally doing what normal tourists do. Last night we stayed at Manitou Lodge near Rialto Beach; tonight we’re in the Kalaloch Suite at the Kalaloch Lodge, with seven 3’ x 4’ windows offering a 180° view of the ocean. The weather is clear, the sun is shining, and our room is about as large as our entire apartment, only more open, and there’s a HUGE bathtub where you can soak and still look out the windows. We’re living it up—and this time I’ll remember the whole thing!
I must admit, though, that I needed this vacation. In addition to our “normal” jobs—I’m the lead unit secretary at a small specialty hospital, and Greg is the lead for landscape maintenance at a couple of retirement communities, as well as webmaster for a private garden—we’re still managing editors of our own movie review website, Past the Popcorn, with a staff of six writers, as well as consulting editors for another website, Hollywood Jesus. When you add in managing a chronic illness, we generally keep busy. Let me emphasize, though, that Greg and I love our life. As partners in just about everything we do, we are an inseparable, interdependent team that defies the majority of conventions when it comes to couples and families and just being who we are.
As our vacation threatens to come to a close, I know that I have rested well. Four different beds have wreaked havoc on both of our musculoskeletal systems, but we eased seamlessly into vacation mode, and have thoroughly enjoyed ourselves. One night I even ate dinner in the restaurant just downstairs from our room. For the first time in four years, I ordered a dinner (carefully choosing things I could easily liquefy with some concentrated mastication), and ate some of the most delectable and decadent foods I’ve ever eaten in my entire life, let alone post-GP. Then I went back to our room and vented through the g-tube, and returned for dessert! I’m sure that’s not necessarily the intended purpose of the tube—pleasure eating and venting—but I tell you, it meant the world to me that night.
Our next planned vacation is a New England cruise this October, up into Nova Scotia, and back down to New York City with both sets of parents. You can bet I’ll be blogging away on that one (there’s even Wi-fi on the cruise ship!)