Living With a Chronic Condition In a Rural Community

Living in a rural area with a chronic condition can a challenge. I live in a rural community. We are 2.5 hours away from the airport, and five hours away from a major metropolitan area, Denver. In my town, primary care doctors come and go, making it a challenge to have continuity of care. There isn’t a variety of support services to serve chronic conditions, and specialists are usually located in cities. Seeing one requires travel and time off work. One doctor I had for years was helpful with my migraines, and then he left. New doctors are a bit of a random pick, and it is likely they will only stay a couple of years. I understand — rural healthcare is a challenge for physicians, too, who have to make a living. But going through my entire health history with a new doctor over and over is so depressing. I’m seeing a new primary care doctor next week so I’m already gathering up the old blood test records and neurologist records so I can relate my plan and history to him.

I drive five hours to see my neurologist who is a headache/migraine specialist. There are no headache specialists in my state, and after several not-so-great experiences with general neurologists, I decided that I must see a specialist. So it is two days off work to get care. It takes time. A lot of time. There are certainly benefits to living rural. The air is clean and the skies are breathtaking. At the grocery store, there are always people I know, and I can catch up on town happenings without even reading the newspaper. There are many places where there is no cell service, so we have to unplug. My husband and I can take a hike and not see another human for the entire day. We can truly settle into the rhythms and rhymes of the unplugged world. My husband is gluten-free, and we can go into a restaurant and our server knows our dietary needs and makes adjustments with a smile. And truly, life can be slower-paced. Heck, our rush hour is a five-mile drive across town. These things can be great for self care.

I’ve learned a few things over the years about getting the best health care available even when I live in the boonies and have to re-arrange my life a bit to get the best.

1. Find a specialist.

Work with your insurance company to identify a physician who really meets your needs. Identify the specialist you want to see and ask him or her to help you justify your visit to the insurance company. I have had several insurance companies over the years, and by collecting information on physicians in my network, I have been able to get non-network providers included in my network under special provisions.  It takes a lot of phone calls, and a lot of self advocacy, but the result is worth it. These are some migraine specialists directories here and here; other conditions may have their own directories.

2. Do your research.

Read, read read. Some physicians get offended when you arrive to their office with research, but I’ve found over the years that being prepared helps me get better care. When I was getting my thyroid tested, I went to a doctor and said I wanted an entire thyroid panel. He tried to convince me that it was unnecessary. I insisted because everything I’ve learned indicates that for migraineurs, a complete panel is needed. I went to see another physician a few years ago, and I got the proverbial, “If you reduce your stress, your headaches will go away.” I don’t see those doctors anymore. I like having a physician who knows the research, too. Then I can talk about the latest, and discuss what options might be available soon, and the likelihood of them helping me. That give me hope. Here’s my list of must-read books about migraine.

3. Keep good records.

Because I see physicians who are not within the same network, and my health care landscape regularly changes, I keep good records. I have a spreadsheet that summarizes my blood work for the last five years. This way a new provider can glance at it and see the trends. I also have a list of the dozens of meds I’ve tried, what’s worked, what’s stopped working and what I won’t try again. I’ve gotten very odd looks (truly, and once, resistance to even look at it), but the information is clear, easy to read and it tells a story. I may be challenged at keeping a daily migraine record, but when it comes to visiting a new provider, I get my ducks in a row.

4. Connect with others online and in person.

It was not until I began to connect with others who experience chronic pain and have migraines that I began to get over my feelings of powerlessness. I learned that the shared experiences of my fellow migraineurs lessens my isolation and reassures me that the journey is real and worth it. I have also gained a tremendous amount from hearing about what works and what doesn’t. Last weekend I spoke with two women at a “yoga for headaches” workshop. Immediately, we settled into this compassionate, loving conversation with each other about how we manage. It just makes me feel a little more connected and whole in the world.

5. Practice good self care.

For me, this is the most important point. Because there is not easy access to care, I work to keep myself healthier. I know it is my best and easiest option. By self-care I don’t mean taking baths or getting massages, I mean eating healthy and being active. I take my yoga practice seriously because it seriously keeps me well. And when I slack off for a week, I can definitely feel it. When I don’t get enough sleep I can definitely feel it. And when I decide to eat donuts or an entire bag of potato chips (yes, please don’t judge me. I love chips!) then I can definitely feel it. My daily yoga practice is the best reminder for me to practice self care. The discipline of going to a class and committing time to myself is invaluable. The commitment to sit and breathe for even five minutes a day is a life changer for me (and that is researched, too!). Overall, yoga is a reminder for all aspects of my life — to live with compassion for myself and others, to be active and still, and to nourish my body with food, creativity, sunlight and love!

So set yourself up for the best you can get, and enjoy the quiet countryside with good care. It is worth it.