2019 Reflections

What an incredible year 2019 has been!

I smile as I reflect on the highs and lows of 2019. We started the season with incredible guests that kept us in awe, (MastaAce), became filled with optimism (Dr. Boster), fed our soul (Dr. Seewaldt), and made us squeeze our loved ones a little tighter because of how they love us (Courtney Townsend). Each episode is a learning experience for us, along with time to grow and think of more exciting content to bring our listeners.

This Multiple Sclerosis journey is by far one of the toughest burdens we manage, but our dedication and passion to the podcast (and listeners) are a few reasons why we refuse to stop. If you recall, Daana recorded many season 2 episodes from the hospital and rehab, then after 18 years of living in Washington, D.C., I packed up my home and son (by myself) moving twelve hours away. Both of these incidents occurred #BecauseMS. MS is terribly unforgiving, and when it roars, its energy runs you over with a vengeance.

Thank you for those who have listened to Myelin & Melanin since the first day we aired season 1 episode 1! We also greatly appreciate our new comrades tuning in and always providing heartfelt comments. 2020 has a lot in store for all of us, and hopefully you can feel our excitement rumbling. Make sure to listen for the alert when the Season 3 opener airs on January 18th!

Have a fantastic New Year’s eve everyone!

-Dawn

[ 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 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 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

[ Episode 14 Recap ] Ordering Disorder: MS, Compulsion & Control

Does the word control stir up an emotion for you?  For most people, when they think of control they feel confident and strong; as if they have a handle on their life.  But that isn’t always the same for those of us with MS.  It’s as if we struggle to gain power while holding on to a mask that shields the fear and uncertainty.

What I found, as I manage & navigate this wild illness, is I’ve lost the feeling of having control.  Daana and I both have had over a decade of fighting with a monster that does not care about us.  Quite often, the lack of control turns us into multi-taskers.  We carry the shield to cover all the emotions along with bringing new challenges.

As we discussed throughout the Podcast, having an MS diagnosis can make a person feel we are in a constant state of uncertainty.  The fact that our bodies have been invaded — well actually our bodies attack itself — will force you into wanting to take charge.

We chuckle, but the determination can (and does according to various studies) lead one to OCD or other disorders (i.e., an eating disorder).

Take a look and read some of the articles we mentioned in Episode 14.  Feel free to comment or send us a message!

 

Love and Light,

D & D

[ Episode 13 Recap ] We Wear the Mask: Depression, Suicide & MS

Everyone faces moments in life where things may not be picture perfect.  For some, it is easy to “snap out of it” and move forward, but that isn’t always true for those of us that have a chronic illness.

Multiple Sclerosis is a progressive disease that is honestly quite frustrating.  Many people with MS face a daily struggle because we try to fit in, or appear as normal as possible.  It’s tough when your legs have turned into loose noodles, or your shirt isn’t buttoned evenly because you can’t feel your fingers.  So what do we do?  We end up wearing a mask!  Of course some days are much easier to manage than others, however we still have an invisible shield covering our outer shell.  Why?  Because this HURTS!

Let me speak emotionally first because it’s a given that there is some level of physical pain associated with MS (i.e. muscle spasms, nerve, & eye pain).  Those of us with MS  face tremendous challenges each day.  Feeling as if you are a burden, leaving a job you love because of your disability, not being heard or understood can lead many down a long dark road.  Emotions take control which leaves you with no choice.  You grab your mask and make sure it’s on tight.  Facing the outside world is too much so we remain covered and escape into our own world.  Take a look at the article we talked about in episode 13.  It explains how people living with MS are emotionally at ‘risk for several co-morbidities.”

 

If you are feeling as if you need to speak with someone help is there.  You are not alone.  The Multiple Sclerosis Association of America has people available on their helpline from 8:30 am – 5:00 pm, (800) 532-7667 ext. 154.  Email MSquestions@mymsaa.org or chat online at www.mymsaa.org.

https://suicidepreventionlifeline.org/

 ( 800) 273-TALK (8255)

Help is there.

Love

D & D

[ 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

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

 

[ Episode 7 Recap ] Excess Baggage: Traveling and Dating with MS

Pack your bags, the boarding pass is printed, sunglasses are on the table, shoes are at the front door, but WAIT!  I seem to have forgotten some things, like an extra pair of undergarments, clothes…OH and the fact that I just can’t pick up and run like OJ (the one that we thought was normal) in the airport.

Traveling has become daunting and honestly isn’t as fun as it used to be, said hundreds of MS patients. I know we laughed a bit in the podcast,  but jumping on a plane, train, or in a car requires far more planning and preparation when you have a disease that requires so much attention.

We wanted to share personal accounts about what travel means to us and shed some light on things to think about as you go into this Spring and Summer travel season. Below you can download a helpful checklist that may help as you pack for your travels. Yes!  We want to inundate you with tools that will help!

Love & Light

 

D & D

Catching Cayla

Happy Spring?

Pardon my sarcasm, but I think a majority of us are still feeling a bit chilly and hoping for some consistent warmer temps — although, many MS patients suffer from terrible, downright unbearable, heat intolerance!

How does heat affect your MS?  I can speak for myself and tell you that I’d rather go on an Alaskan cruise rather than book a trip to the Carribean for Spring break!  No, my heat intolerance isn’t fun, and unlike many people I know, I am dreading the summer months.

As you know by now, there are over a million people (worldwide) who have been diagnosed with MS.  Each one of us is affected differently; this certainly isn’t a one size fits all illness.  You may love the beach and never face any challenges with 80-degree weather. That’s fantastic if you can enjoy each season and its beautiful weather. Just know that there are many of us glued to our AC from May-October, depending on where you live.

For those of you wondering about heat intolerance and MS, take a look at the link below. There are many symptoms that heat and humidity can bring, such as muscle weakness, brain fog/confusion, irritability, or loss of function in your extremities.  With proper rest and enough recovery time, your body will adjust, cool down and find its normalcy again.  Keep in mind, this is however you define your “normal.”

Read and learn about the various strategies that will help you in those times of temperature sensitivity.  Your symptoms may just be that, symptoms.  Most neurologists will tell you that the feeling is temporary and you have not caused damage by being in the sun.  Take a look.

Again, Multiple Sclerosis a disease that will leave you feeling puzzled, which is why it is important to educate yourself and become familiar with the various types.  We posted a video about the types but here is a link that will go into more detail for you, so take notes.

Additionally, I would like to show you an example of an amazing young lady who was a high school competitive runner, and how becoming overheated affected her.  She is quite an inspiration!

Until next time….

Love & Light

D & D

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