Episode 13 — We Wear the Mask: Depression, Suicide & MS

Listen to Episode 13  of Myelin & Melanin!

In light of the recent suicides of Kate Spade and Anthony Bourdain, we felt it was important to highlight the topic of suicide and MS. It is important for people to consider that there is no “one size fits all” approach to dealing with suicide — especially as it relates to chronic illness. Join us as we share our thoughts on 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!

We also have a new YouTube channel. Search “Myelin and Melanin” on YouTube to find us — check us out and subscribe!

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.

Episode 12 — No Way Out: Captivity, Identity & MS

Listen to Episode 12  of Myelin & Melanin!

Join us as we reflect on MS as the most vicious kind of captor, and how it alters life, relationships & identity.

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!

We also have a new YouTube channel. Search “Myelin and Melanin” on YouTube to find us — check us out and subscribe!

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.

[ Episode 11 Recap ] What about me? Fear, Uncertainty & MS

Can we be totally honest?  Multiple Sclerosis is a layered disease!  It’s as if you’re peeling back layers of an onion, only to realize your eyes becoming tearier.  Or better yet, you’re walking a tightrope trying to make sure you keep it together because one quick move may have you flat on your face.  The fact remains that this is not an easy disease for most.  It comes with quite a bit of challenges that can leave a person in a complete tailspin of emotions.  MS is an enigma, a darn conundrum, and it is perfectly normal to say I DON’T LIKE what is happening to me.

In episode 10, we talked about isolation and what that means when dealing with a debilitating illness.  Do you find yourself retreating from friends & family, are you creating walls and self-isolating?  I think as you face the disease and your “normal” becomes new, you develop a heightened awareness of most things that used to be part of your life.  Are my friends/family excluding me purposely because I may take longer getting places?  Am I a burden?  Is the time and effort it takes to go worth it?  

Quite often we have discussed how it never occurred to us that we may face major struggles that could & would lead to fear, anxiety, sadness. Speaking for myself at the moment, denial is a helluva drug (lol), and I was in it deep. I almost had an arrogant attitude, which blocked all of the thoughts about “what could potentially happen.”  The fear and uncertainty of what could happen slowly became, wow, this IS happening and I am experiencing this.

Episode 11 brought us to a few more thoughts and questions we asked each other:

  • Uncertainty/Grief-other issues that can plague us at times
  • Uncertain about future whether married and unmarried
  • Becoming a parent/choosing not to have children
  • Forming romantic relationships
  • School
  • The grief of our old selves
  • Fear of what the diagnosis means to you which leads into the article below (The Huffington Post,By Jill Shreve).  Take a look and ask yourself if these things resonate with you.

When we are given this diagnosis it can be scary and there may be a myriad of emotions along with a huge amount of fear. Ask questions when your uncertainty creeps in and wants to stay.  I think being communicative with someone you trust or yourself can help tremendously.  One of the best questions to ask during the quiet time you have, is who am I after this MS diagnosis?

Until next time!

Love & Light

D & D

Episode 11 – What About Me? Fear, Uncertainty & MS

Listen to Episode 11  of Myelin & Melanin!

Join us as we tackle the issues of fear and uncertainty — and the roles that they play in the lives of those with MS. What will happen to me in the future? Will I get worse? Will I get married? Will I end up alone? Tune in as we share our experiences surrounding these issues. Feel free to engage with us, and share your comments and questions.

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!

We also have a new YouTube channel. Search “Myelin and Melanin” on YouTube to find us — check us out and subscribe!

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.

Episode 10 – The Eleventh Time Might Be The Charm: Isolation & MS

Listen to Episode 10  of Myelin & Melanin!

Tune in as we tackle a very serious topic — isolation and MS. MS is a lonely disease. Often, we find ourselves self-isolating at various times and for a myriad of reasons. Other times, the isolation can feel imposed on us by friends and family who may be well meaning, yet oblivious to the impact that their actions (or lack thereof) have on us. Join us as we explore this tough but important topic. Feel free to engage with us, and share your comments and questions.

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!

We also have a new YouTube channel. Search “Myelin and Melanin” on YouTube to find us — check us out and subscribe!

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.

Isolation

The article below touches on some of what we’ll be discussing in Episode 10, but to be honest, how the author ends the article doesn’t sit quite right with me. She writes, “I don’t feel like it’s a bad thing to kind of go on a ‘mental vacation’ for a night, etc. but be careful on how far you isolate yourself and for how long… because you don’t want to push people away that really truly care about you.”

She’s right, but that said, I’m not sure it’s quite that simple. There are a myriad of reasons why we self-isolate. We’ll touch on a few of those reasons in Episode 10.

Nonetheless, there’s some good food for thought, here.

Love & Light.

Episode 9 – Musings on Medical Marijuana

Listen to Episode 9  of Myelin & Melanin!

Tune in as we share our musings on the benefits of (and different modes of consuming)medical marijuana for MS symptoms.

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!

We also have a new YouTube channel. Search “Myelin and Melanin” on YouTube to find us — check us out and subscribe!

Please feel free to reach out and comment with questions, feedback or suggestions for what you’d like to hear in future episodes.

All About LEMTRADA: Reboot & Heal

Hello all!  Have you have had a chance to listen to episode 8?

Making the decision to choose the right therapy best suited for YOU is difficult.  Some days this thing called MS responds in such strange ways, it’s hard to tell what would be the best choice! This week we wanted to separate Lemtrada from the other therapies we’ve discussed and share our individual experiences.

Both of us have taken 2-3 therapies and we felt it was important to separate Lemtrada from the others.  One reason is that it’s considered a newer DMT used to treat MS (only FDA approved within the past 5-10years).  In fact, Daana was the first patient in Wisconsin to be infused with Lemtrada.   I believe I was the sixteenth patient from my neurologist’s office.  So, yes, this is certainly viewed as NEW.

The fears and anxiety of any treatment are normal, of course, but to include them in something that has a tremendous amount of preparation (before and after),  can leave you jittery.  Not mention the uniqueness of Lemtrada.

Remember, if you decide to make this therapy your choice to treat MS, ask your prescribing doctor questions!  Nothing is silly and it is better to ask before diving in head first.  Should you choose Lemtrada it would be helpful to:

  • Be your own advocate
  • Ask questions (I can’t stress this enough)
  • Do your research and decide if this is best for you
  • Talk to your support network
  • Join the Lemtrada Facebook group
  • Stay positive
  • Breathe, you will get through this
  • Follow your prescribing doctor’s  protocol
  • Call Genzyme and ask questions (they are the pharmaceutical company that will provide this therapy to your doctor)

Read more about Lemtrada on the Sanofi Genzyme website for more detailed information: https://www.lemtrada.com/

A few things I wanted to mention…if you do decide to have this infusion: be aware of any changes that may occur in your body. You are not paranoid or being a hypochondriac.  It is very important to note any change that is out of your normal way of feeling.  This is to ensure that your treatment plan runs as smoothly as possible.  The various delayed side effects are NOT something that happens to everyone.  Let me stress, it has happened to someone, therefore, it’s our understanding that pharmaceutical companies are required to report these occurrences.

*We are not doctors.  We’re just two gals that chose to take control over their MS and select a therapy that worked best for us!

Until next time.  Episode 9 will be here before you know it.  In the meantime, listen to 8 & catch up on any episodes you may have missed.

Find us on Facebook, Instagram, Twitter and now a new YouTube channel!

D & D