10 strategies that help us survive medical travel and appointments
For us, prioritizing fun, family, and friends is key
Over the past year, our 7-year-old daughter, Violet, had 52 infusions and more than 22 additional medical appointments for her Gaucher disease. Because we live in rural Alaska, where there is no home healthcare, the infusions take place at our local hospital. For all other appointments, we travel — sometimes across the country.
With such an overwhelming schedule, my husband and I have had to get good at finding the fun, friends, and family wherever these trips take us.
Last week, for example, Violet and I spent three days in Anchorage — 100 miles from our home in Moose Pass — for appointments with a gastroenterologist, a pediatrician, and a cardiologist, plus a sleep study and lab work. It was exhausting. On top of that, we fit in daily visits with my dad in assisted living. It could’ve been a tough week, except that we planned enjoyable activities and stayed at a friend’s house to break up the stress of medical routines.
Here are 10 strategies that help me manage the chaos and keep our spirits up:
1. Be realistic and organized. Violet has a lot of medical anxiety. Two appointments a day is manageable; three is too much. Since we often travel for care, we try to group appointments to reduce the number of trips. Scheduling in rest or fun helps us avoid burnout. I use the calendar app on my phone to stay organized. It’s helpful when both parents can be there, but that’s rarely the reality.
2. Lean on friends and family. For me, staying with loved ones is more comforting (and more fun) than a hotel. Of course there are exceptions, but I’ve been blessed with an amazing network of relatives and close friends. If we’re not staying overnight, we still plan to meet a friend for lunch. After all, you have to eat anyway, and connection matters. Violet especially enjoys seeing friends her age, and that gives me a much-needed break.
3. Build relationships with care teams. Bring your nurse a coffee. Ask your doctor about their day. Maybe even send a thank-you card to that specialist who goes above and beyond. These are people we see often, and building rapport creates a more supportive, human experience.
4. Get creative with activities. Whether it’s carving pumpkins during a 24-hour electroencephalogram or bringing a craft kit to the assisted-living home, hands-on activities break up the screen time and give kids something to look forward to. This weekend, Violet and her brother enjoyed Big Gem Diamond Painting kits as well as temporary tattoos, which they selected from our favorite family-owned toy store.
5. Spend time with animals. A visit from a doctor’s Saint Bernard puppy or snuggles with a friend’s baby bunnies can completely shift the mood. Animals lower stress and bring joy — take the opportunity if it arises!
6. Enjoy good food. When traveling, we treat ourselves to special snacks and restaurants. It’s a simple way to make the city feel more like an adventure. A home-cooked meal at a friend’s house is especially comforting. Staying hydrated is hard, but vital, so we always carry water.
7. Find playgrounds and get outside. Fresh air helps everyone reset. One of our favorite memories is pushing my dad’s wheelchair to the park so that he could watch Violet swing and slide.
8. Prioritize rest (when you can). Sleeping in unfamiliar places is tough, especially during a sleep study, but melatonin, cozy blankets, or even my own pillow can help. And when all else fails: caffeine (for me).
9. Ask for help. Violet’s 10-year-old brother is a champ at navigating large hospitals. He can drop off a sample in the lab and then meet us at pediatric cardiology on a completely different floor. Store baggers help with groceries. Friends drop off forgotten items. Accepting help makes everything more doable.
10. Be grateful for the time together. No one dreams of spending their vacation in a hospital. But when living with a rare disease, hospitalization becomes part of our life. We try to embrace the moments of connection, even in the most unexpected places.
I’m grateful to my friends, family, and their pets who help make medical trips fun and smooth. I’m lucky that these trips, while stressful, provide an opportunity to visit and connect. In the end, whether sick or healthy, these relationships are treasured.
Note: Gaucher Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
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