A "Western" Disease
Turns out there's a natural medicine center in my neighborhood. Insurance doesn't pay for it, but the fee for a consult is less than my co-pay for the specialist. Of course, I'm not allowed to stop seeing a specialist, so the natural medicine acts as a "supplement", but that works for me.

Turns out Dr. Tillitson (PhD in medical anthropology) studied Ayurvedic Medicine in Kathmandu in the 70's under Dr. Mana Bajracharya... So he's going to work on getting the inflammation down, having me lose weight to lessen the pressure on my joints, attacking any stealth infection in my gut that could be activating my immune system.

In the spring, just before the growing season started, my knees hurt so much I could hardly walk. I got home from work and slept for an hour before I could think about doing anything else. After a couple months of dealing, finally going to my primary care provider, who sent me for a round of lab tests (result: "you have something autoimmune going on"), and then sent me to a specialist who took more lab tests, "they" decided I have lupus. ...Only to be told, after the diagnosis, that if I had any more questions I should look it up on the internet. And take these meds.

I spent several weeks too busy and fatigued to look at anything. After a short course of steroids, I started looking up lupus on the reputable medical websites, who called lupus "a Western disease" with pages and pages of symptoms and long term degeneration and possible treatments for the symptoms, cautioning me not to exercise and not to go in the sun. Then I tried looking up blogs and videos from people dealing with lupus, which worked to get me in a deep, hopeless depression. Most gave strategies, recipes, highs and lows: overcoming. Not depressing in themselves, but the hardest part for me was feeling guilty for getting a "Western" disease.

What do people do with pain and fatigue in other places? I know they get these symptoms. When I was a kid growing up in Nepal, my mom--a librarian, with antiseptic ointment, bandages and aspirin in a locked cabinet--was the first aid provider for our whole village. When our neighbor got gored in her ribs by the plowing bull, my mother was the first person they called. My dad ended up  running to get the mission Land Rover and driving our neighbor and her husband to the hospital for stitches. It would have been an hour's walk. Up the street one of the aunties didn't get her hand out from the rice huller in time and the heavy dhan kuttne beam crushed her hand, and ground her glass bangles into her wrist. That was also a hospital run after my mom stopped the flow of blood. She dealt with a lot of cuts, boils, other pains, but being so young I didn't realize she was probably doing counseling as well. 

So how do I get expensive, ongoing treatment for pain, when people in other places are still dying from septic sores? My counselor tells me that it's only the people who have bad problems who post on the internet. The ones who are managing don't talk about it online. My faith sister, a nurse, tells me, "You've got lupus; lupus doesn't have you." My walking partner texts, "Shall we try a gentle walk this week?" My ayurvedic doctor monitors my progress. I haven't found a new specialist yet, and my primary care retired last month. I handle my fatigue by dreaming of getting a smaller house, and letting my son cook dinner most nights and my husband wash dishes. Growing season is right around the corner, but this year I can walk. Now I can stand to teach my class, and I can kneel at the communion rail. I don't know how long that will last, or what other manifestations I will experience, but I'm on the way, and I've got people walking with me.