Did you know that if you split Alaska into two states, Texas would still be the THIRD largest state in America?
Alaska is that big, and I learned the fun way, on a recent “expedition” up North to visit the 49th– and by far the coldest – state in America.
The reason for the visit was thanks to an invitation from Dr. John Botson, who heads up the newly formed Alaska State Rheumatology Society. Dr. Botson, and the six other rheumatologists in the state, inaugurated their first annual rheumatology society meeting, and wanted to include the patient advocacy and CreakyJoints perspective.
Fortunately, after a 4,500 journey, I was greeted by friendly and familiar faces. Dr. Sarah Doaty, who is a medical advisor for CreakyJoints and recently helped oversee the publication of our first ever RA Patient Guidelines, relocated to Alaska a year ago to work as a rheumatologist for the Alaska Native Medical Center, which is a very special place. Dr. Doaty splits her time between clinic at ANMC in Anchorage, and going far, far out into the most remote areas for three days at a time, to see patients from surrounding villages and oversee their rheumatologic care. During one recent visit to Bethel, she was recounting how this small village is the ‘feeder’ village or hub for 58 smaller villages in the surrounding areas. To date over 25% of these villages don’t have running water. Yes, in the United States.
Dr. Doaty talked about the challenges of treating patients who live in such remote areas, and the important role that telemedicine (teleconference between doctor and patient and check-ins by internet, where available) plays between those rare but important in-person visits. And the challenges that are unique to living with arthritis in a place like rural Alaska – for example, most medicine is shipped by mail (here in New York City, too) except it’s very common during the winter for a blizzard or fog or other weather storm to ground all planes, shut all roads, and halt all activity for WEEKS at a time. So folks who rely on biologics, for example, might go without their medicine for an extended period of time because ‘the mail can’t fly that week’.
How crazy is that? And you complained that the nearest Target was a 20 minute drive..!
During this trip I was lucky enough to visit with two special people from the CreakyJoints community, a patient advocate who recently represented our 50-State Network and testified before the Alaska Legislature last month, and a member named Deb who responded to our email inviting the local CreakyJoints community members to join us for dinner.
Over some of the most delicious salmon I have ever eaten, we talked for hours about what it was like to live with arthritis in Alaska (and what it was like to live there, in general), and the importance of raising our voices as advocates with our elected representatives as we keeping track of how we’re feeling with ArthritisPower. Ashlyn recounted a story about getting a call from a neighbor who told her “did you know that your kid is chasing a bear while wearing a helmet camera?” Only in Alaska. Only in Alaska.
It was an overwhelming sensation to be so far away from home – 4,500 miles to be exact – and still feel at home with people I could relate to because they are members of a very special community (family) that is CreakyJoints. I will definitely be back to visit and was grateful for the invitation to visit with folks like Ashlyn and Deb, and meet the dedicated doctors who work with Dr. Doaty.
Next stop on my impromptu National-Tour-of-CreakyJoints-Members is Little Rock, Arkansas, in just a few weeks. There I look forward to visiting with the Arkansas Rheumatology Society and meeting CreakyJoints members who live there.
For that trip, I’ll leave the snow boots at home.