Name?
Savanna Braun Age? 23 Type of RA and lupus? Polyarticular Psoriatic Arthritis with Spondylitis and Enthesitis, was JIA since the obvious onset was around age 13/14 How does it affect your daily life? My daily life consists of going to classes, studying, completing assignments, doing something with at least one of the clubs I’m in, and, of course, being with friends. This disease, along with some other ones, are woven through this and have really been a deciding factor in just about everything. I go to school in the place I do now because it has a small campus that I can get around, an issue I learned of when I went to a huge campus my freshman year, and that the air quality is decent, along with the fact that there are trees everywhere, which makes me happier. The schedule of my classes and amount of courses I take are planned out to give me the ability to nap a lot during the day, which I need to do, while still allowing me to have enough time to study & do my work for. The clubs I’m in are not at all physically demanding, most of the official things to do are very low activity if anything, this works for me because my body would not be impressed with me joining a rock climbing club, which I’d love to do but cannot. Even down to the friendships I have, if they are highly active, adventurous people, we aren’t going to be hanging out a lot. My closest friends at school all like to just hang out at each other’s places, watching something, talking, all things I’m usually perfectly okay doing, they are even happy to tag along on my medical errands, which is wonderful because I’ve always felt they interfered with my ability to be with people for as long as we want. And of course, my being able to do all of my treatments can change my plans, like if I have my fistful of pills to take at their scheduled times or can I get back home to do a nebulizer treatment since it’s not portable. Biggest of all, it can make me unable to do anything I need and/or want to do because I’ll be in too much pain or fatigued or have been doing too much and know I have to slow down. Do you have triggers? My biggest triggers for feeling miserable or flares are doing too much and continuing to say yes to things, not sleeping enough, stress, infections, staying still too long, even weather changes, like with rain or extreme temperatures (anything outside of 60-80F). What do you want people to know? The biggest thing I’d like people to keep in mind is the variability of these types of conditions, I can be living in a way that’s pretty normal, and then it will blow up. I’m often not going to have obvious physical manifestations, regardless of how bad I’m feeling, and that can be confusing for people. This is in no way a suggestion to examine me closely, but sometimes the less obvious predictors of how bad I’m feeling are how dark circles under my eyes, makeup, walking pace, paleness, skin mottling, breathing, how talkative & loud I am, speed of talking, focus level, eating, etc. |
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