Years ago, when I was still working full time and Matthew was a preschooler, traveling was not my priority. I knew that traveling with a young child would be challenging and I didn’t want to add more stress to my Scleroderma flares. It just didn’t seem like it was the right time. I always imagined that when Matthew would be older, it would be easier to travel. I also thought that I would miraculously regain energy over the years.
Unfortunately, living with an illness like Scleroderma, I have learned that waiting for “later” is not the best idea.
I have to confess that for the past three years, I had been feeling bitter. I felt life was very unfair to me. I thought living with a chronic illness was already enough to bear. Three years ago, I retired from work and Matthew was no longer a preschooler; I had created a bucket list that shortly after, I knew I wouldn’t be able to accomplish (at least not as I had planned).
I was in a pretty bad shape right after retiring from work. My immune system was extremely weak, catching every possible virus, one after another. I had an annoying morning cough that wouldn’t go away, as well as awful heartburn spells. I was going to the hospital for testing every other day. A common procedure (but highly risky) like the right-heart cath procedure was one of those tests done so the doctor would confirm the pulmonary hypertension diagnosed for accurate medication dosage. Unfortunately, this procedure caused a pneumothorax, a full collapse of my right lung (one of the many risks of this procedure).
The pneumothorax was a scary and painful experience, but recovery wasn’t too bad. My body bounced back quickly and after a year, I was feeling great! My breathing seemed to feel better, the heartburn spells were under control with medication, and my immune system had gained some strength. I was then, ready for everything and anything on my bucket list!
A year and half ago, I was ready to get started with my bucket list. I was shocked when I was sharing my travel plans with my pulmonologist. She advised that traveling on a plane would put my life at risk because of the air pressure. The outcome of the right-heart cath procedure and the history of interstitial lung disease had put me on a high risk for another lung collapse. To avoid the painful chest tube and a life threatening scare, I had to avoid any air travel plans.
While listening to this bad news, I felt that one of the precious dreams I had to travel with my son had completely vanished. I had always wanted to take Matthew to Mexico to meet our extended family and show him the beautiful places I had experience as a child. I was so disappointed that I had waited so long. Most importantly, I was upset that I was depriving my son from something so fascinating and fun: experiencing other cultures and countries.
Scleroderma has taken so much away from me: my health, my career, my confidence. Taking away one more thing (traveling) that could possibly be fun and memorable was just upsetting.
Recently this year, I decided that my illness wasn’t going to take over my bucket list. I realized that I didn’t have to travel to another country to get away with my son. I started to think outside the box! Why can’t we travel by train or bus? I came back with endless possibilities. So far, we have been to North Carolina, Florida, Maine, Connecticut and Boston either by bus or train. It’s definitely a longer ride, but workable. There is plenty of planning ahead of time to make sure that everything goes smoothly and that there are plenty of resting opportunities. Hopefully, I’ll be feeling strong enough to continue to plan trips. I hope to eventually plan a cruise, which would be something completely new and amazing.
I’ll be sharing some traveling tips in future blogs in case you would like to be adventurous and take a train or bus ride.
I learned to take advantage of the little gains. I learned to appreciate those days where it seems like my health is stable and enjoy it to the fullest. I also learned not to plan too far in advance because I can never predict my flare ups.
Takeaways from my experience:
- Don’t wait for “later” to do something you could possibly do now.
- A chronic illness will lead to many unexpected testing procedures and each . procedure always has risks
- Think outside the box! There is always a way to meet your family goals and dreams. We only have to adjust the path to get there.