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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. Name?
Kallie Middleton Age? 19 What food allergies do you have? Peanuts and tree nuts When were you first diagnosed? 12 How does it affect your daily life? I have to read labels on everything I eat and watch what I eat. What happens when you eat something you are allergic to? My throat and tongue swell, I break out in hives, and since I have asthma it causes an asthma attack. How has it changed as you have gotten older? No change that I know of What do you want people to know? Food allergies are nothing to play around with, they are very serious and potentially life threatening. Also, do not make someone that has food allergies feel bad or make fun of them for it. Name
- Soren Age- Teen Where do you live? - DFW, Texas What illnesses (Mental or Physical) do you have? - I have Major Depressive Disorder (Severe, Reoccurring), Anxiety, and Obsessive Compulsive Disorder. I'm also Autistic and ADHD, though I would consider those a part of my neurology rather than mental illness. Regarding my physiology, I have patello-femoral pain syndrome, which occasionally affects my mobility. When were you diagnosed as Autistic? - I was officially diagnosed as Autistic last summer, though I had self-diagnosed for many months before. I think that me being Autistic was overlooked for a number of reasons, particularly because I am AFAB (assigned female at birth) and had already been diagnosed as ADHD at 6. How does being Autistic affect your every day life? - Because being Autistic is a part of my neurology, it affects everything I do. I'm particularly talkative on some days and super quiet on others because I'm Autistic; I spend hours looking up obscure information that only I care about because I'm Autistic; and I tear off all the tags on my shirts and shoes and pants because I'm Autistic. These are just a few examples out of many, but I think that it's important to realize that my neurology is who I am and how I experience the world. Sure, I might have to take breaks where allistic people wouldn't, and I can spend hours trying to find that one perfect word to match the specific meaning I have in mind... but neither of those things are objectively bad. Society is what limits my "ability", not my neurotype. If I were to change the ways that being autistic affects me, I would not be the same person. Are there any items or techniques that you use to keep your symptoms under control? - Many Autistic people, myself included, "mask" in order to present a more attractive front to society. This doesn't mean that we are any less Autistic; it's just that we are repressing our nature in order to appease social expectations. Personally, I don't try to redirect my behaviors unless they are harmful to myself or to others. Masking is something that I'm learning to "un-learn", because acting in a way that you're not wired to act is, at minimum, exhausting. Stimming is how Autistic people regulate sensory input-- when that is taken away from us, our most important "technique" ceases to exist. What is something you wish neurotypical people understood about being Autistic? - I wish neurotypical people would understand that Autistic people aren't puzzles that need to be solved. We aren't burdens or part of a larger "epidemic", and speaking up for ourselves doesn't make us too "high-functioning" to have an opinion. Autism is a spectrum like the color spectrum, not the number spectrum; in this, there is no "high" end or "low" end, because no two people's experiences are the same. What advice do you have for someone newly diagnosed as Autistic? - First: Don't think of yourself any differently than you did before your diagnosis. YOU haven't changed, only your label. Second: Seek out community. There are people out there who understand what it's like to be neurodivergent in a neurotypical world, and their perspectives will add to your own in insurmountable ways. What is your name, age and what are you diagnosed with? |
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