Episode 20 — Tricky Territory: Relationships and MS

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Relationships are complicated enough by themselves. Add multiple sclerosis to the mix and the complexity is multiplied. When do you divulge that you have MS? How do you approach the topic? To tell or not to tell? Join us as we tackle these oftentimes tricky relationship questions.

Check us out, listen and subscribe to the podcast on Apple Podcasts or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

Episode 19 — MS and the Case of a Stolen Life

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MS is a thief. There’s no other (or softer) way to put it. It robs us, and what we’re left with is often a shell of what used to be. Join us as we grapple with this layered issue.

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

[ Episode 17 Recap ] Shift the Paradigm: Living Your Best Life Despite MS

Changing your way of thinking is a big adjustment for a lot of people. Of course, we go through life expecting our lives to look different as we age, but when it comes to those of us with MS that’s a hard pill to swallow.

In episode 17 we talked about how difficult it can be to accept the fact that yes, life has changed, & we HAVE to alter our lives a bit.  So what does that look like?  For those of us with MS, it means we paradigm shift.  This week we had the pleasure of having a brilliant neurologist, Dr. Aaron Boster, provide us with vital information about paradigm shifting, and what it looks like for Multiple Sclerosis patients.  Dr. Boster of Ohio Health MS Center in Columbus Ohio says that paradigm-shifting is, learning how to adapt despite the MS challenges that step in your way.  Take a look at his video on Youtube about this topic and ask yourself if there are areas in your life that can benefit from a shift.

Dr.B discusses the concept of “Paradigm Shifting” to thrive despite having Multiple Sclerosis. Multiple Sclerosis can result in loss of functions (for example balance). When this occurs it can be challenging to learn to adapt and eventually overcome, despite this new limitation. Learning a new DIFFERENT way to accomplish the old tasks using new ways can result in success. Paradigm shifting is important.”

During the podcast, both Daana & I mentioned the emotional toll it can take when you find yourself living a new normal.  Quite often this “normal” isn’t one that we are ready to accept into our lives.  That’s OK!  There is a process when planning and thinking about how life will look as you go through the phases MS.

Start with changing your narrative then allow the shifting to begin.  Be KIND and GENTLE with yourself, remember this is a “marathon and not a sprint.”

Happy shifting MS warriors!

Dawn & Daana

Episode 18 — Broke: Coping with the Costs of MS

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There are many costs associated with being diagnosed with a chronic, progressive disease like MS. These are realities that can leave one…BROKE – literally and figuratively. Not only does the emotional impact often leave us feeling broken, the financial impact is overwhelming and quite often devastating. Join us as we discuss the costs of living with MS.

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

Episode 17 — Shift the Paradigm: Living Your Best Life Despite MS

Listen to Episode 17 of Myelin & Melanin!

Living life to the fullest with multiple sclerosis is hard, but it’s not impossible. Join us as we talk with Dr. Aaron Boster, MD, a clinical neuroimmunologist who specializes in treating MS. He shares with us the concept of “paradigm shifting” as a way to reframe the narrative, change your lens, and live your best life — in spite of MS. We’ll also share our own tips. [ Please forgive our technical difficulties. ]

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!

[ Episode 16 Recap ] Voices & Choices: Self Advocacy and MS

The summer is starting to wind down!

It’s hard to believe that the regular fall routines are almost underway.   For many of us, this is a time to schedule doctor’s appointments and make preparations for the next major holiday.

Hopefully, you tuned in to Episode 16 as we discussed Self-Advocacy.  The prior episode, our focus was on self-care and ways to incorporate “taking care of you,” into your daily life.  With all that gets piled onto our plates, it’s really important to look at yourself and quite honestly, take a personal inventory.

Today we see just about everywhere #hashtags or “quotes” reminding us to take care of ourselves, and “place your mask on first.”  In our podcast, we brought this topic to the forefront. It walks hand in hand with self-care; self-advocacy.  Being an advocate doesn’t mean you have to be loud or cause some sort of conundrum with family friends, caregivers, or physicians.  According to the definition, advocacy means the act of pleading for or supporting.  In our opinion, the best person to advocate for yourself is YOU, especially when managing a disease like Multiple Sclerosis.  Below we compiled a list of ways to speak up for yourself and allow your voice to be heard.  Take a look to see what can be incorporated into your life.

Number two says, my body my choice for a reason.  Sometimes, MS patients and people in the disabled community are faced with having to voice their concerns about how their personal space is violated.  We mentioned the article in the podcast and here it is for you to read.

Until next time!  Be sure to tune in this weekend to episode 17, this one will be one you don’t want to miss!

Happy self-advocating!

D & D

Episode 16 — Voices & Choices: Self-Advocacy and MS

Listen to Episode 16 of Myelin & Melanin!

Self advocacy is an essential life skill to develop and hone when navigating a chronic illness like MS. When dealing with a vicious disease that often strips away our independence and control, it is imperative that we use our voices to advocate for ourselves — by asking questions, asserting our agency, and creating boundaries. Join us as we explore this important topic.

Check us out, listen and subscribe to the podcast on iTunes or SoundCloud. Also, follow us on Facebook, Twitter and Instagram @myelinmelanin to keep abreast of our latest goings on!