Episode 18 — Broke: Coping with the Costs of MS

Listen to Episode 18 of Myelin & Melanin!

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!

[ Episode 15 Recap ] Put Your Mask on First: Self-Care and MS

What have you done for yourself since the New Year began?  Can you believe we are half-way through our year?  It is hard to imagine that there are 67 days until fall.  Cooler temperatures will soon creep in, and before you know it we’ll be preparing for Thanksgiving.   I should probably ask again, have you taken time to replenish, or fill your own tank?  Have you carved out enough time to make YOU a priority?

Quite often, we become so engrossed in the lives of others which can leave a person feeling depleted.  When you do not pause or take a personal inventory, you run the risk of neglecting your needs.

In Episode 15, Put Your Mask On First: Self Care And MS  we discuss ways to make sure you’re caring for yourself.  When managing a chronic illness like Multiple Sclerosis, it is imperative that you remain a priority.

I know the term self care is seen everywhere these days and many go through the day uncertain about where to begin.  We are left asking ourselves, how do I start?  It is important to know that self care is not a selfish act, it is a necessity.  Take a look at this checklist list we feel can help you manage your peace, pause and self care.

 

In addition to the checklist, peruse the article from Well + Good which highlighted Dawn recently.   She discusses methods she takes to ensure caring for herself has become priority.

Talk to you on Episode 16!

Take care of you!

D & D

Tripping On Air

Tripping On Air. First, what an awesome title (and look at her logo, y’all — everything). Second, I absolutely love her blog. I am looking forward to blog binging (is that a real phrase, or did I make that up) today:

TRIPPINGONAIR

Her Instagram feed has been such an inspiration to me, as I am getting adjusted to life in public on my wheels. I have sheltered myself for months, afraid of what others will think of me. I’m slowly getting out of my funk. It’s been hard, but I am thankful to others for sharing their experiences. It’s not easy. I admire their courage.

This woman is such an inspiration.

Love and Light.