It’s Not All Glitter

Bubble baths, massages, shopping. These are just a few things that initially come to mind when I think of self-care. Self-care is often glamorized, focusing on the external material aspects that constitute treating oneself. Now, don’t get me wrong, I’m a huge fan of all of these aspects, and I love a good shopping spree every now and then. But these aspects are just on the surface of what it really means to care for yourself.

Self-care isn’t always as luxurious as it sounds or looks on movie screens. Taking care of oneself requires dedication and discipline. I’ve found that self-care is uncovering the ugliest parts of yourself. Really getting to the root of who you are as a person, how you react to specific situations, and how you grow as an individual are just a few life-changing processes that I truly consider caring for yourself. But where does this process even begin? Visualizing the person you want to be and showing up as them every day, regardless of your current circumstances, is just one method. Much like the classic saying, “Fake it till you make it,” you are only as good as your mindset. By acting as if you are already where you want to be in life, the rest will surely catch up in due time.

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Dear Caregiving Warrior

While we honor the important role of care partners throughout the year, November is an extraordinary month as we recognize National Family Caregiver’s Month. MS is unpredictable, and having a loved one diagnosed with it can be scary and overwhelming. MS symptoms may greatly vary from individual to individual. An individual with MS may need help with daily activities and these challenges might get more complex over time. Being a care partner requires a lot of patience, understanding, empathy, and flexibility. Here are some things to keep in mind as you provide care to an individual with MS:

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Steven Kaiser – November 2023 Artist of the Month

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 Steven Kaiser as the November Artist of the Month. Steven is from Greensboro, NC.

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Ask the Expert – Pain

Featuring Barry A. Hendin, MD 

MSAA’s Chief Medical Officer  

Headshot of doctor Barry Hendin, chief medical officer for MSAA
Barry Hendin, MD

Question: What types of medications are prescribed for pain in MS and what types of   

complementary and alternative medicine (CAM) may be helpful?   

Answer: Management of pain includes but is not limited to prescription medications. Our initial goal is to assess the cause of the pain and then to try to manage the pain itself. Pain in multiple sclerosis (MS) can come from lesions in the central nervous system (CNS), which produce very specific symptoms of intermittent facial pain (called trigeminal neuralgia) or burning and itching discomfort in various parts of the body.   

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What MS Has Taught Me

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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What MS Has Taught Me

Working within the MS community has provided me with a profound perspective on life and resilience.  Each day, I witness the trials and triumphs of those living with this complex condition, and through their experiences, I have gained invaluable lessons that have reshaped my outlook on life.

The Power of Resilience: Witnessing the determination of individuals with MS has attested to the true power of resilience. Despite facing unpredictable symptoms and challenges, the strength shown by these individuals in their pursuit of a fulfilling life is nothing short of inspiring.

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Thriving with MS

Living with MS can be an ordeal of its own considering the unpredictability and uncertainty that comes with having it. MS can affect mobility, independence as well as quality of life. Symptoms may greatly vary from individual to individual. Over time, it might get harder to perform regular activities. By getting diagnosed during the earlier stages of the disease and with the appropriate treatments, an individual can live a healthy and fulfilling life.

For some individuals, the symptoms may be profound while for others it might be manifest as an invisible illness as result of which people close to you may fail to understand and acknowledge the seriousness of the situation. MS can make one feel isolated and alone. Individuals with MS want to be heard and would benefit from having a close-knit support system to vent out frustrations and anxieties whether it be friends or family.

For those who have MS, ask for help when you need it. Embrace your body’s limitations. Share your experiences and stories. Empower yourself and others by being an advocate for MS. Raise awareness of the disease and make use of the multitude of resources out there to improve the lives of those with MS. Set aside time to do things that you love and make the best out of your MS.

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Resilience Is Your Superpower

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

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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What People with MS Wish Others Knew

When a health condition is invisible to others, people who do not have the condition may struggle to understand it. This is often the case with multiple sclerosis (MS).

Many MS symptoms cannot be seen. This can be incredibly tough for people living with MS. Those around them do not always understand what they are dealing with, even after they try to explain.

To find out more about the MS community’s experiences, we reached out to the MultipleSclerosis.net Facebook page. We asked, “What is one thing about MS that you wish people understood?”

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