Travel Bug

June 10, 2017 at 4:14 pm (Uncategorized)

I’ve been writing this blog since 2006. I was scrolling through old entries the other day and realized how often I write about the hard parts of life in Chronic Town and that I’ve given short shrift to some of the wonderful aspects of my life since I was diagnosed with sarcoidosis thirteen long years ago. One of the consistently good facets of my life has been travel.

Since my diagnosis in 2004, Jay, Andrew, and I have been to Thailand, Iceland, Canada, China, Scotland (twice), Mexico, France, and Costa Rica, as well as to a good number of cities in the U.S. We are preparing for another big trip this summer. We’re heading to the Azores—a group of islands off the coast of Portugal—for a couple of weeks. Later on, we’re planning to explore the Washington coast.

Traveling means so much to my family. Of course, there is the joy of seeing new places. We live in a small city with almost no ethnic diversity. It’s important for us to show Andrew that it’s a big world out there with a lot of different kinds of people. Traveling also breaks us out of ruts and routines. It’s invigorating to take a break from daily life. But I think the most important reason that traveling is essential to my family is that it brings us together. As much as we’d like it to be otherwise, the challenges of living with my chronic illness separates us from one another. I’ve mentioned this before, but I spent roughly six of the last twelve months in the hospital. We tried to have dinner together every night was in there, and Jay spent every minute he wasn’t at work by my side. But it was still an incredibly isolating experience for each of us. When we leave the country, we get to leave all that behind. There are (hopefully) no White Coat visits or hospital rooms waiting for us abroad. There’s just the three of us—together—experiencing a new place.

Some people find it hard to believe that I am able to travel with a chronic illness. The implication is that if I’m really so sick, how is that I’m able to caper all around the world? I don’t travel when I’m in a rough patch. We’ve had to cancel more than one trip because I’ve been flat on my back in a hospital room. I also am exceedingly careful when we’re away not to overdo it too much. I definitely push myself, but I also make sure I take rest days in bed when I need them. For the most part, I’ve been very lucky. I haven’t had a major health breakdown abroad. I came close in China. A combination of food poisoning and air pollution nearly put me over the edge, but I was able to make it home. Since that trip, we’ve opted to stick with trips to more developed countries, so that if I do fall apart, getting quality care will be easier.

There’s always a risk to leaving home. For me, it’s that my health will fail and I’ll have a hard time either making it home or receiving the care I need when away. In a lot of ways it would be easier just to stay home. But I can’t. I need to remind myself that I am not just someone with a chronic illness. I am also a woman who can travel the world.

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Bodies in Motion

June 2, 2017 at 12:29 pm (Uncategorized)

It’s been a great few weeks. I’ve been feeling better and better and therefore able to do more and more. I’ve been using my office space downtown working on my book, which I’m now about halfway done with. I’ve been meeting friends for lunch. Last week, I reintroduced the gym into my life. I’m only able to ride the stationary bike for twenty minutes at a time, but it’s a start. I’ve also returned to the kitchen and am cooking (almost) my fair share of dinners. Tomorrow, I hope to build on this momentum—push myself to work an extra twenty minutes on the book, ride five more minutes on the bike, and make pad Thai for dinner.

And then, it all comes to a screeching halt. Thursday is treatment day. It’s time for my monthly all-day infusion of ivig. I need to get this medication since, probably because of the sarcoidosis, my immunoglobulin levels are dangerously low. So I get this monthly boost not only to fight the sarcoidosis, but also so I don’t catch every bug in the universe. Before the White Coats figured out I had low immunoglobulin, I got pneumonia four times in three months. But as much as my body needs the ivig, it fights getting it. It takes 200 mg. of Benadryl during six hours of infusing to prevent me having an allergic reaction to the infusion. That’s a lot of Benadryl. It leaves me dopy and confused for a couple of days; the treatment knocks me back into bed for at least a few days with flu-like symptoms and a raging headache. I hate treatment days.

For me, one of the most challenging aspects of living with a chronic illness is the lack of momentum. It seems like just when I’m getting into a positive routine, it’s time for another treatment, or the disease flares, or something stalls me in my tracks. I am very much a creature of habit. I see this most clearly when it comes to my writing life and exercise. It takes a lot of willpower for me to get into a routine with both of these. But once I’m on a schedule, I seem to keep rolling along.

I’d like to get better about picking up my routines again as soon as I feel better after a treatment day. I lose precious time getting back into daily life by procrastinating. I don’t think this is unique to me or to chronic illness. A good friend is dealing with aging parents, who are often in crisis. She has no control over when she has to make a trip to help them, when her momentum gets stalled. Life is a process of rebuilding. I know that. But it’s still hard.

What are your strategies for dealing with a loss of momentum? How do you get going again after you’ve been stalled?

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