When Lupus Happens To You
Folks Stories

I am sorry for your diagnosis. I have it too. I am SUPER SORRY to hear that you ever have even a single day at the beach. Avoid the sun at all costs. You are a vampire now! Really it has a cumulative effect. It makes you more likely to have hideous reactions to less exposure later. Take Plaquenil even if you don’t think you need it. It stops bothering your stomach after a few months. Get “The Lupus Encyclopedia” which is easier to understand than “The Lupus Book” and covers everything under the sun. Learn to let go external and internal expectations of your success and get a new yardstick. I gave up my successful legal career. It was horrible at the time. Eventually I discovered that I could hike in the woods without getting sick because of the shade under the trees. And because if you get sick there, you can just lay in your tent until you get better. Once I laid there for 12 days. But I hiked 1200 miles of the Appalachian Trail, and next year I’m doing the entire trail. I still get sick. I can’t go out in the sun. I can’t work because I randomly get sick and get laid up for weeks. But I can walk in the shade, and I am good at that! So you may have to find new goals, but eventually you’ll be okay with that. I ended up hiking as a by-product of being forced to live in the woods, because I no longer could afford to pay any rent! Terrible. But it eventually became okay. Other advice: Methylprednisolone is less hideous than Prednisone. And Wen shampoo is less harsh than regular shampoo, by far. I know how you feel. Also, those microwave eye masks, inside a wet warm washcloth, really help dry eyes. If this helps anyone else. Lupus tends to be triggered in Type A females in their prime. The go-getters. It’s hard to have your trajectory set, your future planned, be on the road to your success, the just begin to see the fruits of your educational labor, and your work labor, and then be stricken as you are ready to start your career, or start a family. And it’s hard especially knowing that there are so many other people out there with far worse health problems. You feel bad for yourself, and bad about feeling bad. And you have a nagging sense of dread, well justified. It can be alright. Plaquenil will help, it ensures that you need prednisone less often, so take it. And ease your expectations, your path may veer wildly as mine did. And your family and friends may talk about understanding but they simply don’t get it at all, and never will. Mine think it’s like having the flu, and think I’m lazy for not powering through it, to use your words. Well, it depends on what it is you are doing. You can’t power through 70 hour workweeks, many of which involve court appearances, with severe fatigue, joint pains, kidney problems, bouts of pneumonia and bronchitis, fevers and migraines, and memory problems. But they don’t know that because they don’t have those symptoms, and they also have never worked that job. Nonetheless they’ll judge you, as lazy, for no longer doing it yourself. (For example.) Thanks for this story, and for the opportunity to throw on my own here.

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