Being diagnosed with a rare autoimmune disorder comes with many challenges- one of the most common and often more difficult is learning to become your own advocate. More often than not, the people and healthcare professionals I encounter are not familiar with my condition, which frequently means they do not know the symptoms that accompany the diagnosis and the treatment options that work best for me. This is when speaking up for myself becomes vital.
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Living with multiple sclerosis often means navigating a complex healthcare system, where self-advocacy becomes essential. Recently, I experienced firsthand how crucial it is to stand up for yourself in medical settings.
About 6 months ago, I made the decision to switch to a new neurologist, mostly due to the cost of my annual MRIs. I did my research and found an MS specialist 1.5 hours away and decided to give him a try. I arrived at the office, was pre-screened, and all seemed well until the doctor came in and I found myself being questioned and patronized in a way I have never experienced in a medical setting (or any setting really). Despite living with MS since 2016, doing well on the same DMT for 6 years, and working for MSAA for the past 3 years, the doctor asked me to justify my treatment and explain its benefits in detail before he was willing to continuing the conversation. I never received a physical examination, he never once asked about my lifestyle, and the entire interaction felt like a test. I guess I passed because he did end up ordering my next MRI and continuing with the same treatment path I was already on. The experience left me feeling unheard and disrespected.
Continue readingOnce in a while, I face challenges that remind me just how much I’ve grown over the years. I’ve come to understand that challenges are actually opportunities for personal growth—and that some setbacks are blessings in disguise. Looking back, my younger self could never have imagined how resilient I would become.
She would be proud of how much my perspective has shifted as I’ve grown older and wiser. I used to cling so tightly to people, places, and things that I ended up suffocating the very opportunities life was offering me—to explore, to learn, and to flourish in unfamiliar territory. It was hard to say no to things that drained my energy and happiness. But over time, I’ve learned that while life can be unpredictable and full of obstacles, I have the power to choose my perspective. And today, I choose to believe in myself and trust that I can handle whatever comes my way.
Continue readingLife is one roller coaster of a ride. I realize that each life experience has a mix of emotions attached to it. At this point in life, I think I have experienced it all – anger, frustration, joy, happiness, embarrassment, peace, sadness, laughter, grief, and so forth. I have been overwhelmed many times, not knowing how to handle it all.
Having a good support system has always been my foundation, and it has helped me get through those tough times. I am proud of the little victories and the small successes that I have encountered in my journey through life.
Continue readingAs an anxious child, I often felt the need to plan for every worst-case scenario or consequence, not only for myself, but for the actions of those around me. The best way I could describe it was as having thoughts and feelings that were constantly at 0 or 100, with no other level in between.
Another symptom of this was something I think a lot of people can relate to- a massive need for “people pleasing.” I think there is a misconception among us people pleasers that the only alternative to making everyone happy is to be outwardly rude or antagonistic. Sometimes, it feels like those are the only two options.
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My favorite aspect of spring is the reminder that a new beginning is always possible. Just as nature transforms with this new season, we too have the opportunity to bloom alongside our surroundings. This spring, I’ve decided to start the season by exploring a new hobby: gardening.
I’ll be honest—I’ve never had a green thumb. Every plant I bring home eventually loses its luster, and almost all the flowers I plant don’t sprout. This season, however, I want to give myself the opportunity to truly learn what gardening is all about.
Continue readingBy Stacie Prada
Without changes in routines or seasonal differences, it’s easy to lose track of time, day of the week, month, and even time of year. It’s good to have consistent healthy habits, but variety in schedule, activities, and environment helps us mark time.
Consider driving a long stretch of highway. They have names for the experience of driving a distance, losing track of time, and being surprised not to remember it: highway hypnosis and white line fever.
The more monotonous an experience, the less alert we’ll be, and we become more apt to operate on autopilot. It’s a small leap to compare this to our lives and how we experience time passing. The less we notice and the more we operate on autopilot, the more time can fly by.
Continue readingSpring is officially in bloom, and with that comes a sense of renewal and fresh beginnings. The new, warm season is the perfect opportunity to embrace a clean slate and positive energy. Whether it’s decluttering your home, prioritizing health and wellness, or taking a step back for some relaxation and self-care, now is a great time to start anew and focus on things that bring you joy!
This spring, I have challenged myself to prioritize overall wellness. This means, I am striving to put in extra energy towards eating well and consuming whole foods, remaining consistent with exercise, going for more walks, spending quality time with loved ones, and focusing on what brings me overall happiness and health. Especially when dealing with an autoimmune disease, I’ve found that it’s so important to put energy into enriching aspects of life: nutrition, health, loving connections, and happiness in the small things. With that being said, I have decided to make my personal challenge a fun one by creating my own spring bingo card!
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It started with realizing that the sun had not set yet before dinner, noticing that my shoulders didn’t automatically hunch against the wind when walking outside. Then, when the flower blossoms started blooming and my allergies came again, I finally realized that we were running headfirst into spring.
It is interesting how spring brings up similar feelings of new beginnings and motivation as the new year. While ‘resolutions’ are attributed solely to the January holiday, springtime has its own version of starting anew – spring cleaning.
Continue readingDear Friend,
I’ve been thinking about you so much since you shared your recent diagnosis of MS. I know this probably feels like a lot – like the ground has shifted under your feet – and I wish I could be there in person to give you the biggest hug. Since I can’t, I wanted to write you this letter instead.
I don’t have all the answers (who does?), but I want to share a few things that I’ve come to learn about MS. Just remember, you are not alone. Not now, not ever. I am here for you, and so are your closest friends and family.
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