The fatigue can be really distracting. Sometimes, symptoms come on hard for a few years, and then back off after a while, or shift. For fatigue, I think the main takeaway for me has been to try to stay in as good cardiovascular shape as I can depending on how I'm feeling, and work in strength training on good days. If my hands are too bad for dumbbells and my back hurts too much for crunches, I'll hike or ride a bike. If my legs hurt, I'll try to do a little weight work. I shoot for 120 minutes per week, but sometimes hit 180... or 80. This part is going to be tough working on a farm-- my guess is that work has to be done when it has to be done, but if you can organize some tasks depending on how you are feeling, that may help.

Also, I'd avoid the tempting internal narrative that if you need to rest, you have to hit the rack for 90 minutes or 2 hours. If possible, learn a style of meditation, or take a nap where you give yourself permission to relax-- completely-- for 15 to 30 minutes. It's not magic, and when you open your eyes, you probably won't feel better at first (though you might.) Try getting back to your day-- you may find it's that two or three 20-minute rest/meditation periods are all you need.

Eventually, after the second blood clot, and when my blood pressure started climbing, I knew I had to change careers, could not work 9-to-5 anymore. High blood pressure, I believe, increases the risk for pulmonary hypertension, and that's the bullet you need to dodge. Took me four years of grad school and clinical training-- really closer to 5-- and was scary to do in my early 50s, but it was the one of the best decisions I ever made. I still work nearly full time.

I also quit drinking and smoking, drinking in 2014, smoking in 2011, and don't use any recreational drugs. The main reason was my health, because alcohol and nicotine go after blood vessels, same as other autoimmune problems. And I think I got a big boost from that.

But the other issue is dealing with the US health care system. At regular intervals, you may encounter medical professionals who insist you don't have an illness, or that it is in remission, or that your symptoms are the result of a lifestyle choice. Being substance free puts you in a better negotiating position. With some providers, you're going to have to put a gentle but firm smile on your face, fold your arms across your chest, and say, "Look, I've done my part to manage my health. I exercise regularly, I don't eat junk food, I don't drink, I don't smoke, I meditate and spend quality time with friends and family. If there's nothing you can do, or you've run out of ideas, or you just don't know, it's fine to tell me that. But I need you and your team to think outside the box keep working this problem. This one isn't on me, I've done my part, though I'm always open to ideas."

You may have to waste some time taking vitamins or trying do-nothing medications-- that's fine, some of them may even work! But do your research. Don't be coerced into taking something if there are 50,000 credible reviews online saying that people took it five times and it ruined their lives. It's okay to refuse treatment sometimes.