Contribution and Coping – Don’t Stop

Posted on March 18, 2024 by Alexa Moreno

There will always be hard days, we simply cannot escape this. Have you ever woken up and felt so fatigued, but knew you had so much to accomplish that day? Or maybe your day was going well, and bam…you’re hit unexpectedly. It’s easy to feel defeated, but what would your day look like if you kept going?

Coping is the ability to deal “successfully” with a challenging situation. The successful part is the grey area. What does that mean to you? To me, successfully dealing with something hard is having a moment of clarity to keep going, even if it’s for a short period until we must cope again. It could also be continuing through our day-to-day while having something in the back of our mind that we are reminded of every so often.

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MS & Acceptance

Posted on March 15, 2024 by MSAA

By: Brittany Quiroz, “A Hot MS”

How do we really come to terms with accepting our new reality with an incurable progressive disability? Right off the bat we probably feel like we have been predisposed to failure. Self-acceptance requires us to really be comfortable with our present situation and let’s face it, there are plenty of parts about living with Multiple Sclerosis that are not considered “comfortable”. MS can present an abundance of changes and unexpected whiplash that we do our best to navigate through.

The key to sustainable self-acceptance relies on our ability to stay present while not setting unrealistic expectations for ourselves. We can be really good at beating ourselves up, can’t we? It doesn’t help that we live in an era where competition is all around us. Our status in society can easily be determined based on how many likes we get. How many followers we have. What car we drive. What our zip code is. What job we have. It’s easy to feel we’re in constant competition with the world.

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Infused

Posted on March 13, 2024 by MSAA

By Chernise Joseph

I wanted to do some corny joke like, ‘Yep, that’s me! I bet you’re wondering how I got here,” for the photo from my infusion on Friday, but it seemed a little too double-edged… badumtiss. No? That’s alright, infusion jokes are never funny unless they’re mixed up juuuust right. Ha, okay, in all seriousness – my multiple sclerosis said hello to me on Friday. Well, I suppose it always says hello, but it likes to do it in unique ways sometimes like in the form of an 8-hour infusion. Whew! You read that right. Eight hours of beeping, vitals, tubing, fluorescent lights, too-cold rooms…

I used to hate infusion days. They were long, yes, but they were mostly scary to me. I didn’t know what to expect, nor did I really understand just how important what I was doing was. Of course, I had done as much research as a 23-year-old with a humanities degree could do, but my brain still felt frazzled. What if I spontaneously combust? What if I grow an extra head? What if I’m patient zero for the zombie apocalypse? It was all I could think of going up to the infusion, during it, and even after for a while.

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Stay Connected

Posted on March 11, 2024 by Teena Palathanam

Having supportive connections is vital for coping and managing the daily struggles that come with MS. Establishing those connections early can greatly impact your well-being, especially during difficult times in your MS journey. Below are ways to make those connections that will help a great deal in feeling empowered and more confident to cope with challenges:

Connecting with MS support groups

Support groups can be a powerful tool as they can help you not feel lonely while navigating through the different facets of your MS journey. They can equip you with information, knowledge, and support. You can also find friends for life who share similar interests and passions as yourself. Such social networks provide a safe space to interact and learn from other MS warriors through their personal experiences and feedback.

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Competence and Confidence: Navigating Life with Multiple Sclerosis

Posted on March 4, 2024 by Courtney Merker

MS Awareness Month is here and it’s crucial to acknowledge the unique challenges faced by individuals living with MS. From unpredictable symptoms to treatment decisions, individuals with MS navigate a complex landscape filled with uncertainties and obstacles. In light of these challenges, promoting both competence and confidence is essential for managing the condition and maintaining overall well-being.

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Leidy Burgos – March 2024 Artist of the Month

Posted on March 1, 2024 by MSAA

MSAA features the work of many talented artists affected by multiple sclerosis as part of our annual MSAA Art Showcase. Each month we share these artists’ inspiring stories and beautiful artwork with you as our Artist of the Month. This month, we celebrate Leidy Burgos as March’s Artist of the Month. Leidy is from Philadelphia, PA.

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MS is Like a Fingerprint

Posted on February 28, 2024 by Courtney Merker

Multiple Sclerosis (MS) is a complex and often misunderstood diagnosis that affects millions of people worldwide. Despite its prevalence, there are many misconceptions surrounding MS that can impact the lives of those living with the condition. Although I personally do not have MS, I’ve worked closely with individuals over the years who live with MS, and I’ve learned and observed firsthand the challenges they face and how unpredictable the disease can be. A saying I’ve heard that stuck with me is, “Multiple sclerosis is like a fingerprint”. This saying speaks to the fact that every person’s journey with MS is unique and looks different for every person. There are so many misconceptions surrounding MS and I’d like to dive into what I wish others knew about the disease with the hope of fostering understanding, compassion, and support for those navigating life with MS.

It’s Not Just Physical: One of the most common misconceptions about MS is that it only affects physical health. While MS does manifest with physical symptoms such as tremors, weakness, and mobility issues, it also impacts cognitive function and mental health. Symptoms can include brain fog, memory changes, and mood fluctuations and these aspects of MS are less visible and frequently overlooked.
Unpredictability: Living with MS means living with uncertainty. The course of the disease is unique from person to person, and symptoms can fluctuate unpredictably. This uncertainty can pose many challenges in day-to-day life. In what feels manageable one day could become overwhelming the next.

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Judgment Can Help or Hinder

Posted on February 22, 2024 by MSAA

By Stacie Prada

What do I wish others knew about living with Multiple Sclerosis? I wish they knew their judgment could help or hinder us.

Everyone judges, and it’s not a bad thing. We all have opinions, hopes, fears, disappointments, appreciation, admiration, frustration, and expectations. They come through in our interactions even when trying to hide them. It’s not about the judgment, it’s about how it’s expressed. Whether that judgment comes through as cheerleading or criticizing matters.

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A Wish List

Posted on February 22, 2024 by Teena Palathanam

Getting diagnosed with MS can be scary and overwhelming. Not knowing what lies on the road ahead of you can be very frustrating. MS being an unpredictable disease comes with its own set of twists and turns as symptoms can highly vary from individual to individual. Here are some things I wish people knew about MS:

An individual with MS goes through a lot of challenges daily. Simple activities like showering, meal prep, washing dishes, etc. can seem like daunting tasks.
MS can make one feel isolated and lonely especially if one doesn’t have a strong support system. There might be some days when fatigue is ruthless, those are the times when individuals going through MS might need someone to just listen and maybe extend a helping hand.
The price of medications is skyrocketing every year. Many are not able to continue their treatment regimens as they find it difficult to afford them.
Medications cannot cure the disease, just slow the progression.

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Only 12 Spoons

Posted on February 14, 2024 by Alexa Moreno

I spoke with Alice, a long-time patient with secondary, progressive MS. When I asked Alice the question, “What do you wish others knew about MS?” she shared “I only have 12 spoons.” I was initially confused, but then Alice explained that these hypothetical spoons symbolize her energy in a day. These could be simple tasks to the average person, such as getting out of bed, washing your face, brushing your teeth…before you know it, three spoons have already been used for the morning. Alice says that using this analogy is a way for her friends and family to better understand her energy level throughout the day, so they can plan wisely!

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