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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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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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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Celebrating Success and Seasonal Joy: Reflecting on Achievements Despite the Challenges

Posted on December 18, 2023 by Claudia Chavez

Reflecting on our achievements does not come naturally for most of us. The hustle and bustle of the holiday season, work, family, and other responsibilities typically take over. Have you ever felt like you were living on autopilot? I have. Sometimes, I get so caught up in my routine that I lose track of all I have accomplished during the year. It feels like I blinked, and suddenly, it is December, and another year has passed by. This holiday season, I want to reflect on the achievements and joyous moments I had in 2023.

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Celebrando el éxito y la alegría de la temporada: reflexionando sobre los logros a pesar de los desafíos

Posted on December 18, 2023 by Claudia Chavez

Para la mayoría de nosotros reflexionar sobre nuestros logros es algo que no hacemos con tanta frecuencia. El ajetreo de la temporada navideña, el trabajo, la familia y otras responsabilidades suelen tomar el control. ¿Alguna vez te has sentido como si estuvieras viviendo de forma automática? Yo sí. A veces, me dejo llevar tanto por mi rutina, que pierdo la noción de todo lo que he logrado durante el año. Se siente como si parpadeara y, de repente, es diciembre y ha pasado otro año. En estas fiestas, quiero reflexionar sobre los logros y los momentos alegres que tuve en el 2023.

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Prioritizing Self-Care

Posted on November 29, 2023 by MSAA

By Stacie Prada

Each year I approach the holiday season with excitedly high hopes and an underlying worry for the season’s demands. I know I need to be even more attentive to my health than usual to best navigate the next couple of months. Yet most years I put commitments and other people ahead of my needs. It leads to overwhelm and exacerbates my MS fatigue.

Self-care is an individual decision and responsibility, and it’s within our control. So, what makes it so hard? Often, it’s the abundant needs of family, friends, profession, and self-imposed expectations competing with limited time, money, and energy to meet those needs. The demands of us and by us can be more than humanly possible to meet. So where do we draw the line?

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What MS Has Taught Me

Posted on October 27, 2023 by MSAA

By Suzanne Marriott

Being my husband’s caregiver throughout his years of living with MS taught me a great deal. I discovered hidden internal resources and developed new skills that stretched my understanding of what I could do.

Through embracing the challenges of caregiving, I learned to trust myself to do what had to be done to care for my husband, Michael, despite my self-doubt and lack of experience. For example, in the latter stages of Michael’s disease, I learned to accomplish procedures that only an RN could comfortably do, such as administering IV medications and changing his Foley catheters while maintaining a sterile environment. As his condition worsened, Michael came to trust me more and more, and I was able to ensure that he received the right medical care and the right follow-up—from me.

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Resilience Is Your Superpower

Posted on October 20, 2023 by Claudia Chavez

MS is debilitating and relentless, wreaking havoc on our bodies and minds. It is frequently a diagnosis that causes fear, confusion, and discomfort in so many ways. The first thing that I think of when I speak with a person with MS is the word resilience.

If there is one thing I have learned about people with MS, it is that they are resilient. They have learned to withstand difficulties and adapt to situations that many are unaware of. The courage those with MS show every day leaves me baffled. It takes strength to deal with the physical and “invisible” symptoms of MS, and educating ourselves and those around us about this disease is just as powerful. The MS journey is one of ups and downs, trial and error, and acceptance.

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The Fear

Posted on October 16, 2023 by MSAA

By Chernise Joseph

Since it’s the spookiest of months, let me get right to the point: MS has taught me how to be afraid. To be very, very afraid. As big and as intimidating as that word can truly be, I don’t want it to come across as multiple sclerosis has simply scared me away from living as that isn’t the case at all–if anything it’s the exact opposite.

Multiple sclerosis is a funny thing, especially the sort I have. I can go weeks, months, even years, without any relapses, but the threat of them still lurks over my head like a storm cloud. What if I overdo it today and trigger a relapse? What if the weather is simply weather-y and I’m in relapse-land? What if, what if, what if.. That is what scares me the most about MS. The what ifs.

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Emergency Preparedness – Think Local

Posted on August 28, 2023 by MSAA

Emergencies occur daily, and they can range from mild inconvenience to life-shattering events. There is tons of information available for being prepared for emergencies. Lists of what to include in emergency kits are thorough and excellent for helping each of us have what we need in case of emergency. Pages dedicated to people who are medically vulnerable and disabled are wonderful for listing what to consider for ourselves and those we care for.

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